I woke up the other morning thinking about air pressure, as you do when you’ve spent the best part of a week feeling as though the weather has taken up residence inside your hypermobile body, and wondered what would happen if I went somewhere where the atmospheric pressure was permanently lower than it is at home. Not necessarily somewhere dramatically mountainous, just a few hundred metres above sea level, enough to make a measurable difference. Would I feel worse and would my body notice straightaway?

Then I remembered that I’d already had that experience, a few years ago, and that the consequences of that particular holiday had been more far-reaching than I’d ever imagined. What happened next became something of a pivot point in my understanding of the chronic pain I’d lived with for years, directing my attention, at last, towards hypermobility and, rather unexpectedly, neurodivergence (the most central understanding of my life) because the overlaps were so compelling.

Because one thing I have really come to know beyond doubt about my body is just how profoundly it responds when atmospheric pressure drops. My joints (and then everything else) become excessively lax, sometimes with astonishing speed, and then the whole business of holding myself together against gravity becomes extraordinarily difficult.

Yet, interestingly, I can actually find myself more relaxed and in less widespread pain when I’m lying down during these low pressure phases (as happened this last weekend, for instance, when the barometer was between 982-999 mb most of the time), feeling pleasantly loose and able to position myself more naturally than usual, like I’m a ragdoll flopped on the bed or doing spontaneous yoga. I seem to require less orchestration at such times; far less obsession with pillows to hold me up in a particular position to avoid pain or using a head wedge to avoid head pressure building. I can just curl up and adopt favourite sleep postures that take me back decades, to before chronic pain, as though the concrete that usually inhabits my body has completely dissolved and the rigid diaphragm and braced ribs that usually constrict my breathing when I lie on my back have suddenly vanished. Is it any surprise I took my time getting out of bed this weekend.

At the same time, I already know on such days that standing up and moving will be a whole other matter, requiring prompt use of braces as soon as I get upright, extremely diligent use of electrolytes and salt, and even more horizontal time factored in throughout the day, with a ratio strongly in favour of lying down. I know I will get extremely fatigued doing the most minimal of things on such a day and it will likely feel as though I have the flu coming on. I will also find myself trying to fend off the much increased risk of compensatory muscle bracing, random nerve spasming and unexpected injury whatever I happen to be doing that day so I have to be extra careful.

So it’s one thing to appreciate a slight reduction in pain, lying down, and quite another to feel like a viable human body that can actually move around and do things!

Remembering Shropshire at 5am wasn’t exactly an entirely idle thought then, given how much I have been pondering the effects of lower air pressure, though I appreciate it might sound like one to anybody who doesn’t routinely find themselves comparing barometric readings with the behaviour of their own body. I’d also been going through a particularly unpleasant succession of headaches for days, the sort of occipital neuralgias that begin around the base of my skull and spread towards the crown, sometimes accompanied by tingling in the face, ear and tooth pain, blurred or sparkly vision and extra shrill tinnitus, all coming and going at will though, again, in sync with the frequent air pressure shifts of late.

The October slide usually brings such symptoms along in cart-loads, in my case, but this year has been especially bad since the proper autumn weather landed on a day that happened to coincide with an elderly relative taking a head-first tumble on the pavement when out with my husband and I, then having to wait well over two hours for the ambulance to arrive (he was badly injured about his face but got away remarkably unscathed, considering). The toll of that day of extremely high stress, in my case having to lean-stand against a wall until a kindly neighbour brought me out a deckchair, kicking off the worst kind of orthostatic issues afterwards, together with the prolonged exposure to bitterly cold and damp conditions, began a sequence of symptoms that show no sign of abating through the tail end of Storms Austin and Boelo two weeks later.

Hence me being awake at 5am having such a thought. For a very long time (years) but especially lately, I had been watching the atmospheric pressure rise and fall, sometimes quite sharply, and noticing how the changes seemed to coincide with different kinds of symptoms. Having a new Garmin watch that gives me real-time air pressure readings has really advanced my curiosity because I can keep an eye on it all the time. A rapid fall, particularly with rain, can apparently bring on the familiar pulsing around the occipital ridge, tingling facial sensations and migraine-like sensitivity in seconds before turning my body lax again, while a sudden rise can produce the opposite: significantly more body-wide rigidity and pain, my shoulders and neck suddenly knotted-up, my head pressure intense like I am wearing a very tight helmet.

It isn’t a case of preferring low pressure to high pressure or the other way round, but the fact of struggling with the transitions and having to change my entire game of coping tactics, sometimes multiple times a day.

I’ve also been experimenting with cooling instead of my default tactic of applying heat for pain, as I have done for years managing fibromyalgia, having newly discovered that a frozen gel eye band, worn backwards against the base of my skull, can actually reduce some of the worst neuralgic pain. I was already starting to think more into the interactions between atmospheric conditions, my long-running neck instability and these kinds of symptoms, tracking them much more diligently every day (not just occasionally) so I could compare things more closely. Because fibromyalgia might help explain why pain can become amplified, and migraine might explain some of the neurological and sensory symptoms, but neither label, on its own, is ever sufficient to account for the whole shifting pattern of sensitivity, neuralgia, autonomic disturbance and positional challenges that I experience as the mercury bounces up and down.

This behaviour pattern just had to translate to altitudinal air pressure conditions, surely. Somewhere in the middle of all this, it occurred to me that I’d spent years travelling to places without ever giving much thought to their elevation, even though that would also, sometimes widely, alter the atmospheric pressure to which my body was exposed. So what could I retrospectively learn?

Straightaway, my mind magnetised to that pivotal holiday I mentioned above, the one where we stayed in an Airbnb high up in the Shropshire Hills with one heck of a view, ostensibly on holiday but also a reconnaissance mission as we were well into contemplating a permanent move to that part of the world, to somewhere rural and quieter. A little research at 5 am and I learned that the property we stayed in was perched at 978 feet above sea level. I had never looked that up before.

In other words, it was considerably higher than anywhere I had ever lived long-term and most holidays I could think of, which made me wonder whether the lower average atmospheric pressure might have been another ingredient in what followed because I experienced a severe collapse on that holiday, more or less out of the blue and in a way that, for the very first time ever, directed my thoughts towards the possibility of hypermobility. Well, correction, I already knew I was hypermobile, having had a couple of physios comment on the fact years before, but I had never considered it to be a foundational issue with my health before; perhaps something more meaningful than the fibromyalgia and chronic fatigue labels I had been living under for about 15 years by this time.

To be clear, I don’t imagine that altitude alone explains the collapse, especially given everything else I’d put my body through before we even arrived (more on that later), but it was a variable I’d never even considered at the time. Nor had I appreciated that living at a particular elevation and experiencing rapidly changing pressure during a weather system were different kinds of the same exposure, potentially interacting with temperature, wind, physical exertion and whatever state my body happened to be in already to create a perfect storm of effects.

We’d already returned that spring from a fortnight in the Italian Alps, revisiting somewhere we’d loved a couple of years earlier, although that second holiday turned out rather differently to the first (the most memorable differences being I had since been through menopause, and that the weather on our return visit was much more prone to low-pressure dips, with dramatic thundery rain and surprisingly chilly conditions for May). Instead of feeling invigorated by our walks in the mountains, reached by cable cars that deposited us high above the valley, I’d spent much of the fortnight bewildered by severe joint pain, dreadful gastrointestinal problems and a general sense that something was going badly wrong with my body. The hotel’s marvellous healthy food was almost entirely wasted on my digestive system, while the spa and salt pool became less of an indulgence than remedial measures.

It took more than a month to recover properly when we got back, but I’d already filed the whole episode under fibromyalgia, as I did with most things that went wrong.

By the time we set off for Shropshire, I’d also decided, in a burst of enthusiasm that I can now recognise as so typical of my ADHD, to get my bicycle out for the first time in years. Naturally, rather than building up gently, I’d thrown myself into it, including a particularly punishing hill where I was so determined to reach the top that a couple of women who’d passed me in their car actually congratulated me when they encountered me later at the farm shop café. I was rather pleased with myself, though by the time I got home I felt like a jelly with no use of my limbs for hours.

A couple of days later I was packing the car in the rain for the Shropshire trip, already in considerable pain, no coat on as it was July so my back got pretty wet, and then spent five hours travelling with my rapidly stiffening back against the heated car seat. We didn’t stop for a break (my husband was too impatient to get there given the rainy conditions whereas, these days, I absolutely insist on two-hourly breaks). We arrived there late, exhausted, in my case in a lot of pain, but with just enough daylight left to stand on the raised veranda and gasp at the view.

The property seemed almost suspended above the landscape, its veranda supported on stilts as the garden dropped steeply away from a little fire pit towards trees and undulating hills stretching as far as we could see. There were birds of prey overhead, owls to watch in the evening, and that wonderful sense of having landed in a world far removed from the everyday. It was precisely the sort of place I’d imagined escaping to.

Unfortunately, we had also arrived on the night of a local car rally.

The owner had left an apologetic note explaining that she’d only just discovered the event was taking place, the organisers apparently keeping their route secret until the very last minute to add to the challenge, and as darkness fell we began to see headlights threading their way along the distant roads in the valley below. At first they were little more than moving pinpricks of light, but gradually the sound would approach, a toxic mosquito-like whine as each car wound its way up the hillside, until it reached the lane outside our cottage and flooded the entire building with its full beam.

And then another one. And another. And another. Relentlessly for hours, until dawn.

My earplugs or headphones made absolutely no difference, I could feel it like a vibration through my entire body and was awake for all of it. By morning I was beside myself, not merely because of the noise and the sleep deprivation after an exhausting journey, but because I couldn’t stop thinking about the wildlife. The next morning we found a lot of roadkill outside the property, which had me shaking with fury. All of this emotion was rolled together as one until I could hardly distinguish what was physical and what was purely rage bottled up when I first woke up from a tiny post-sunrise nap. Looking back, I now recognise the familiar ingredients of an autistic meltdown: sensory assault, misophonia, frustration, anger, helplessness and the inability to escape any of it all night long, all piled on top of physical exhaustion and pain.

Then when I went off to take my shower, my pelvis gave way in the most spectacular fashion, as if my legs were no longer controlled by their connection to my body. Once I slid down, there was no way of gaining any traction to get myself back up in what was effectively a wet room with fully tiled walls and flooring; I had to call for my husband, who had to more or less lift me up bodily by the arms and sit me on the loo, then eventually dress me because I couldn’t reach my socks or manage my underwear. This was more than just a fibromyalgia flare; this was something entirely more structural, less negotiable somehow.

Yet in spite of sensing that to be the case, I still tried to negotiate, tried to carry on as before. To go for a walk up the lane which had its own steep gradient, even (a day or two later) to try the hill opposite which was incredibly steep in order to seize the higher view. We went into the local town to do more reconnaissance, though I was hobbling slowly like an old woman and we didn’t get far. Then the ultimate affront to my body, I tried to go walking the rocky route high above Church Stretton in the middle of the week, to see a waterfall, where the terrain was so difficult that I was almost on my hands and knees in places, taking enormous overextensions of my hips to negotiate the obstacles. By the time we somehow turned round (no waterfall reached) and made it back to the car, the holiday was effectively over. I could barely walk at all by now, the pain was excruciating and the five-hour journey back home was undertaken in a very different state to the fairly typical stiffness and pain of the outward one. This was not simply a fibro-flare, I knew that for certain now, it was as if my body had given way in some very core sense that left me unable to be upright at all.

From the start, there was something profoundly different about the sensation, a peculiar and alarming loss of structural integrity that I could only describe as being like a pair of knickers whose elastic had suddenly gone baggy, or perhaps snapped altogether. Nothing seemed to hold together properly any more, particularly when I tried to work with gravity, while the tension and nerve entrapment down my right leg was excruciating.

The trouble is, I’d spent years living with the idea of fibromyalgia and had developed a particular understanding of my version of pain as something in which the signals were always amplified, exaggerated, highly unreliable, shouting far too loudly, sent by an overprotective nervous system. Pain was always there, all the time, so in my mind if I allowed it to dictate what I did I would have no life at all, becoming increasingly unfit, unable to walk the dog, wasting my precious holidays in a state of constant pain avoidance. So I’d simply learnt to push through for years now because, in many respects, pushing through was what had allowed me to keep on living.

After Shropshire, something was entirely different, I knew that at some very profound level, even before I had a proper label for it. That alone should have stopped me in my tracks, and yet (for those first few days at least) I hid what was going on against the background of my idea of chronic fibro pain as this unreliable pain signal I was meant to avoid listening to and not give into. The reality was, my body was dealing with a degree of laxity that couldn’t simply be ignored, something that had always been there but which had become markedly more noticeable since menopause two years earlier and, this time, it was really shouting at me to pay attention.

There had been clues before, of course. So many sprained ankles, repeatedly troublesome knees and hips, bouts of severe intercostal pain that seemed particularly prone to appearing on the kind of active holidays when the oversoft mattress turned out to be the biggest challenge of all. There were clues in the form of many years of TMJ issues, neuralgic pain and neck flares, significantly heavier than normal periods and extreme reactions to the cycles of my own hormone shifts, especially when progesterone was high. For years now, but especially the last two or three, I had experienced bouts of dysautonomia whenever the seasons changed and when I was under particular stress or viral load, but by now they were starting to happen more and more often and become almost the seasonally expected thing, come the start of autumn weather or exceptionally hot days.

Yet I still hadn’t really seen it as what it was: Hypermobile Ehlers-Danlos syndrome. After all, I was short and curvy, not some long-limbed, willowy contortionist who could fold herself into improbable shapes. I still thought of hypermobility largely in terms of being double-jointed, a mildly interesting physical curiosity rather than a connective-tissue disorder capable of affecting virtually every aspect of my physical existence.

By the time Shropshire happened, I was in my early fifties, a couple of years beyond menopause, with an increasing collection of symptoms that seemed to have gathered momentum as my hormones changed. My tinnitus had become much louder and chronic just a few months after my last period, the delayed crashes after exertion were lasting longer and becoming more severe, and the autonomic oddities that I’d lived with for years were growing harder to ignore.

I could see that something had changed. I just couldn’t see the pattern.

There was another uncomfortable realisation after Shropshire because, even before the holiday was over, I had begun to question whether we could really hope to live somewhere like this with such gravity-challenging terrain everywhere we went. The landscape was breathtaking, the remoteness intoxicating, but everything seemed to demand an extra effort, even that innocent-looking lane outside the front door. I found myself bracing before attempting the smallest incline, even just walking around the garden to hang up some washing, and this was summer, when the weather was relatively kind. What would winter be like, with the biting cold, the howling wind and the inevitable need to negotiate hills simply to go about ordinary life; dragging shopping from the boot of the car down some incline, walking the dog daily?

Looking back, I really don’t think I consciously thought of myself as disabled at that point. Despite years of fibromyalgia and chronic fatigue, disability was still a word I reserved for other people, as though my own limitations were merely difficulties to be worked around with sufficient ingenuity and determination. Yet here I was, unable to walk properly, unable at times to dress myself, and beginning to recognise that the life I was imagining might not be compatible with the body I actually inhabited.

By the time we got home I was dealing with a combination of extreme laxity and repeated nerve spasms, as though the structures that ought to have supported me were no longer doing their job and the muscles were desperately trying to compensate, catching nerves along the way. Sitting in a moving car for hours, with the repeated vibrations of travel transmitted through the seat, felt quite different when my body was in that painfully lax state compared to the stiffness of the outward journey. It was as though I felt every single bump on the road and was somehow even less viable against gravity, far less able to help unpack the car or do anything useful, when we reached our destination.

The same contrary factors have to be considered to this day, whenever we undertake a car journey to somewhere but especially if I am in a flare. Sometimes I feel almost too loose to be jolted around on a journey, with insufficient muscular support to absorb repeated movement and vibration through my body (and this can also trigger quite the mast cell flare); at other times I’m hyper-rigid and braced, so that the same vibration aggravates tissues already held in a state of painful tension and triggers such pain and inflammation I’m left in agony. And then there are the days when the atmospheric pressure is changing rapidly and my whole system feels unusually reactive, when adding another physical demand such as car travel seems particularly unwise so I don’t risk it if I can avoid it. Each version is different, and I have to weigh up which is the least risky, accommodating myself in various different ways that have become highly adaptive (braces, pillows, leg raise, sitting upright stacked with my back and neck in a brace or lying back as horizontal as I can manage). The unifying theme is that none of it is straightforward, and it all began with that return trip from Shropshire.

So we went home, and I spent much of the next three months on the sofa, adding a double-thickness memory foam topper because even lying down dealing with the pressure of the sofa pillows was such agony. That topper stayed there for three years, until we were about to market our house ready to sell it (and having a piece of furniture that resembled an amorphous bed in the living room was hardly the look we wanted to project). Helpful though it was, I now realise it was, at times, the very opposite of what I needed to maintain appropriate proprioceptive feedback during my more extended recovery phases, only adding to my overall deconditioning over those next three years. I made the same mistake with another topper on my bed and my experiments with shock-absorbing footwear that was sometimes so cushioned it cut me off from what was left of my sense of gravity and made proprioception much worse.

The point is that, though I had lived with chronic pain for years, something had suddenly become excessively more painful and I was adapting and improvising as best as I could.

With so much time on my hands, now effectively stuck on that sofa for the next three months, I began doing my homework about what symptomatic hypermobility actually looked like in a middle-aged, often highly inflexible woman; could this possibly be me?

There was something about that sudden, overwhelming laxity, the sensation that my pelvis could no longer hold itself together, that didn’t fit the fibromyalgia explanation I’d relied upon for so long. The more I read, the more I began to suspect Hypermobile Ehlers-Danlos syndrome, or at least a hypermobility spectrum disorder, and in the process of exploring one longstanding mystery I found myself wondering about another: could I also be autistic? ADHD? So began the most significant deep-dive of my life, one that altered absolutely everything I had once thought I knew about myself.

In other words, it was just the beginning of a much wider overhaul of my life, though it would be another six years before I finally received an hEDS diagnosis followed swiftly by an autism diagnosis.

In the meantime, I paid to see a fibromyalgia consultant because the severity of the pelvic collapse had frightened and bewildered me so much, raising my suspicions about hypermobility. He dismissed the possibility outright because I couldn’t touch my toes (though he admitted he wasn’t an expert in hEDS), while simultaneously deciding that my fibromyalgia couldn’t be particularly severe because I was “remarkably flexible for a woman of 51”. Even now, I struggle to know what to do with the absurdity of that.

There is a persistent problem with the way hypermobility is recognised, or more accurately, not recognised, in people who fail to match the expected physical stereotype. The image of the young, slim, extraordinarily bendy person remains deeply embedded in popular understanding and can powerfully influence clinical expectations, despite the fact that joint hypermobility is not at all confined to a particular body shape and that its outward appearance can change considerably with age, injury and protective muscular tension.

A woman may certainly be hypermobile without being able to touch her toes, may have joints that are unstable without experiencing dramatic full dislocations. She may very well be remarkably mobile in some directions while painfully restricted in others, with years of muscular guarding and over-compensation concealing rather than contradicting the underlying laxity.

Yet for women whose symptoms have already spent decades being gathered under diagnoses such as fibromyalgia, the difficulty can so often be compounded by the assumption that the explanation has already been found. Pain, fatigue, digestive problems, autonomic disturbances and recurrent injuries are treated as separate issues, blamed on menopause or absorbed into the existing diagnosis, while the connective-tissue pattern that might help make sense of them all remains unexplored.

My original fibromyalgia diagnosis was not necessarily wrong. In my opinion, I still have fibromyalgia and I fully recognise the role of central sensitisation in my overall experience of pain. But having one condition does not protect a person from having another, and treating every subsequent symptom as an expression of the first can become a particularly effective way of overlooking what is happening in plain sight.

You might imagine that three months of being practically welded to a sofa would have taught me something about the wisdom of pushing through, but by the autumn I was sufficiently back on my feet to book an apartment in Amsterdam, reached by what turned out to be the steepest, narrowest flight of stairs imaginable, more like a ladder to the very top of a very tall thin building than a staircase, with another actual ladder to negotiate every time I needed the loo in the night. We spent five days pounding the pavements, and by the time we returned to our apartment each evening, to perform that wretched circus act, I was more or less broken and having to be shoved up there, gripping to the sides with my fingernails, by my husband coming up behind me. How one of us didn’t break our neck I will never know.

That was also the autumn I decided, in my wisdom, to sign up for a yin yoga class. I had been doing remedial yoga every day for years, initially coached by someone who could tell I was prone to hyperextension and dealing with pain so my routine was pretty tailored, but it was to be a lesson learned the hard way for me to realise sustained yin-style hip openers were not my friend. A couple of car journeys home on the motorway, wondering how I would make it back in one piece because I couldn’t feel my legs, had me aborting the class several sessions before the block-paid course was over.

Then the following January, when it was bitterly cold, I decided that Nordic walking would be an excellent way to rehabilitate myself from the previous summer, which wasn’t necessarily a bad idea, except that I approached it with my customary ADHD over-enthusiasm, joined two or three organised walks a week on top of my daily dog-walking responsibilities, obtained my certificate and invested in all the appropriate specialist clothing like I had signed my entire life over to it.

By the time lockdown arrived, the only group I was still managing regularly was the extremely gentle one intended for elderly people or those recovering from operations. There was a massive clue in there somewhere.

I continued walking as near to daily as I could manage through that first lockdown summer, sometimes with my Nordic poles and sometimes without, but the following winter brought a level of dysautonomia, knee and pelvis dysfunction that changed everything. For the first time ever, I was regularly having to abandon my dog-walking responsibilities to my husband, not simply because I was in pain but because being upright, particularly in cold conditions, had become so difficult orthostatically that staying indoors, warm and largely horizontal was sometimes the only realistic option.

It was the beginning of a life that has increasingly become more off than on, more resting and recovering than doing, with far fewer opportunities to act on impulse, for instance to jump in the car and go for a long drive (I no longer drive), cycle somewhere (I can no longer manage a bike), climb a hill (to be avoided) or disappear for a few days to some delightful little pied-à-terre in Amsterdam (travel is, well, completely different now), than during my now hazy recollections of the well-travelled life that existed beforehand. Everything has changed, in spite of the many years of fibromyalgia and bouts of oddly disproportionate chronic fatigue that predated this era. And there has been considerable grief in that loss, the process of coming to terms and letting go of a version of life I genuinely relished, even with the pain.

Shropshire wasn’t the last place where I found myself quietly relinquishing an imagined future. Years later we rented a property for a couple of months in a beautiful, secluded conservation area tucked away inside a major city that I’d dreamt of living in since I was a teenager, somewhere that felt like a world within a world. The whole architectural beauty of the place was pivoted on the way it was all up and down hill with far-reaching views, not least where we were staying, as though we were perched on top of the world. It was an opportunity to test a cherished fantasy against reality, and although the surroundings were everything I’d imagined, the physical demands of walking around the neighbourhood repeatedly defeated me. One earlier exploratory visit to the same place had already ended in me being rushed to hospital after I’d pushed myself uphill following a meal in town and experienced what was then one of my first and still most frightening encounters with POTS-like symptoms, though I had no such label for it at the time. On even moderately flared days I could hardly manage to go for the most modest of walks without paying for it in triplicate so eventually I had to let that dream go, of even visiting there occassionally, as well.

There’s a certain irony in the fact that I’m so consistently drawn to places with hills, to landscapes with character and elevation and the promise of something wonderful just beyond the next rise, when even the relatively modest inclines near the home we finally landed in can sometimes defeat me. The places that most appeal to my imagination are often the very places that ask the most of my body and where my body now says a very firm “no”,

I think there’s a particular sadness in grieving a life you never actually lived, an alternative timeline that existed so vividly in your imagination that relinquishing it feels almost like losing something tangible, almost like the death of a friend (because that’s what our dreams are; the companions we keep closest to our sides, sometimes for many years). It isn’t simply a question of accepting that you can no longer do certain things. It’s coming to terms with the fact that some of the futures you’d spent years quietly cultivating are simply no longer available to you, at all, not even in a modified form. That particular door has closed with a heavy thud, and the lights have all gone out of the dream that once played out like a favourite video on loop behind it.

And yet what continues to astonish me, looking back, is how long the hypermobility trait itself managed to remain unnoticed, not only by me but by the endless stream of people I turned to for medical help, aside from one or two physios commenting I could extend a bit further than normal.

I can now trace the pattern back through decades, to the aches and pains of my teens, the first serious health rumblings of my twenties and the major crash in my mid-thirties, all littered with clues that make considerably more sense in retrospect. When Long Covid finally arrived, right after we moved into our forever home, it seemed almost to produce a caricature of the hypermobile patient overnight: orthostatic intolerance and POTS, the pressing need for joint supports and compression, increasingly obvious mast-cell-type reactions, neurological disturbances and digestive dysfunction. Symptoms that had previously existed in the background suddenly became quite impossible to ignore.

By then I was no longer prepared to accept that my body was simply an unusually troublesome collection of unrelated problems, or that everything could be attributed to fibromyalgia and an overenthusiastic nervous system. I wanted to understand what was happening, and I wanted someone with the appropriate expertise to examine the possibility I’d first begun investigating after Shropshire. And to take me seriously this time!

When I finally received the diagnosis, it was not because my body had suddenly become hypermobile. It was because, at last, somebody knew what they were looking for. Because I chose to see a consultant who had some hypermobility understanding and decent reviews for doing a thorough assessment.

I have since found myself wondering about other places where my health seemed to change markedly just from being there and especially with the add-on effects of the seasons. That includes a six-month period spent in a rural property that initially felt okay during a summer heatwave but became increasingly difficult as autumn brought persistent damp, cold and grey weather. In spite of appearances to the contrary, since it was approached by driving down into a very steep valley, I now realise from my research that it was actually far higher above sea level than anywhere else I had ever lived, at quite an altitude, although nowhere near the elevation of the Shropshire place.

As that autumn progressed and the usual October Slide brought along its typical ups and mostly downs of air pressure, with some significantly wet and stormy weather, I now wonder whether the combination of unfavourable building conditions (this cottage was old, cold and damp), seasonal undulations and atmospheric pressure contributed equally to how badly I struggled there. Because I spent weeks analysing “what’s happening to me”, writing about it, researching tirelessly and asking questions about the place, given how unwell and increasingly disabled I felt there. I couldn’t seem to get away from the place fast enough, grabbing every opportunity to spend nights elsewhere (always feeling much better away from it, only to dread going back because symptoms such as intense aches and pains would quickly return) and, even though I came down with Covid in our very last week there, I felt markedly better once we had moved to another place than I did during our stay.

I sometimes wonder what might have been different had the significance of my hypermobility been recognised earlier, before so many years of trying to strengthen, stretch, exercise and push my way through symptoms that were not always amenable to that approach. I can’t know how much could have been prevented, and I wouldn’t pretend that every difficulty I’ve experienced can be explained by hEDS alone, but I do know that understanding the difference between pain amplification and physical instability has changed the way I live with both.

The recent headaches have led me to consider how atmospheric pressure might interact with several aspects of my hEDS-related physiology at once: cervical mechanics, occipital neuralgia, migraine susceptibility and autonomic regulation. These aren’t mutually exclusive explanations, but interconnected processes, potentially responding together to changing environmental conditions. What I’m gradually learning is that the resulting experience cannot always be understood by isolating one symptom and giving it a familiar label. It’s taken me years of tracking, diligently joining dots and noticing patterns to begin to understand my body in this way, but the relationship between falling atmospheric pressure and my increasing laxity is now unmistakable to me.

It’s also taken me years to fully grasp that understanding what’s going on inside my body requires that I also pay close attention to what’s happening outside it, particularly the air pressure that changes around me from one day to the next. I also apparently need to consider the altitude of where I happen to be, though that is a much more belated consideration, one that has newly dawned on me and gathered some substance in the process of writing this essay. Thank goodness we didn’t buy our house at the top of a hill, is all I can say, and it may very well influence where we choose to spend our future holidays.

This week, I went off on a fascinating side-quest looking into the altitude of somewhere I stayed over seven years ago because I was curious about air pressure, but what I found was a reminder of a time when I was still trying to live according to a set of rules that didn’t adequately account for my hypermobile body. I had gone there hoping to discover whether we could make a new life in those beautiful Shropshire hills, and came away beginning to question something much more fundamental about the very foundations of my many years of chronic health challenges. In some ways, it was a blessing in disguise because it finally set me off on the right track, reframing everything about me through the lens of hypermobility and even neurodivergence.

Of course, I still find myself drawn towards hills, even now, which probably says more about the persistence of the imagination, if not the wisdom of the hardworking joints that try so hard to hold me together, against the odds, every day.

I’m currently exploring the part played by faulty self-beliefs, years of people-pleasing, perfectionism, difficulty saying no, fear of judgement, self-neglect and the internal conflict that arises when what I genuinely want or need is different from what I feel expected to do, in the context of my chronic health status.

Having the AuDHD penny drop and then identifying years of feeling too much, like I needed to alter my innate behaviours, mask myself for survival and hide myself apologetically in the shadows so as not to inconvenience others, is playing a very big part in it.

Importantly, this isn’t me claiming that I got ill because I wasn’t able to live authentically, or that changing that will magically make me recover.

But I am starting to acknowledge how these things have added considerable, almost untenable, amounts of stress for very many decades, going all the way back to earliest childhood. How they’ve affected countless choices around asking for help, communicating needs, setting boundaries and promoting preferences, as I wrote about in my note just the other day (when I finally managed to set a very different boundary around a situation where I would normally capitulate, then typically hate or resent myself for doing so). Around how safe and worthy of having a viewpoint I’ve regarded myself, and around blame, guilt, rest and self-care.

Some of the clues this has been happening include things like resentment that has bottled up “for no apparent reason”, age-old fury left unaddressed and allowed to fester, otherwise inexplicable electrical charges left hanging around certain people and dynamics that continue to trigger long after situations that have somehow managed to fossilise in the air, and fierce demand avoidance in certain scenarios that echo events where I was repeatedly overridden in the past.

Also, trends of shying away from certain “conflicts” that don’t even seem like conflict to other people but, to me, light the blue touch paper internally. The habits of overriding myself, trying to manage other people’s reactions, or feeling unable to say what I actually prefer or need because it feels so unsafe to challenge what others expect of me.

As I start to excavate this territory through writing out my feelings in the raw moments when they come up (not prettily or neatly ready for some blog, but to get it out of me and then let it go as a screwed-up ball of paper thrown into the corner of the room), it’s quite amazing what’s coming up at all hours of day and night. This includes realisations that seem suddenly obvious but which I had buried so deep, so out of sight, yet which have been festering in the body for so long now, sometimes influencing actual body perceptions that directly hint at currently persistent symptom locations or types.

I can’t say I feel suddenly lighter or less symptomatic, but something is starting to shift. Some minuscule fissures have started to form, like a network of hairline cracks in the hard-dark reality of my self-perception, and I’ve started to see myself in a subtly new light as daylight has slowly seeped in, with more self-compassion too. I’ve started to really appreciate the hardships, reframe the distortions and allow some of the old ways I once regarded myself to lift off my shoulders, removing some of the burden of blame and long endurance.

It’s slow and steady work, not always for the faint-hearted, but I’m not pushing it, just letting it bubble up organically whenever it feels it needs to surface. The thing is to always hear it out now, however messily it comes up, not keeping it held in or suppressing it, however ugly the way it manifests in my private moments. The key to it is that processing is indeed private work, not some tantrum to be launched at anybody else but, if necessary, in the safety of my own domain and with tears, anger, sadness…whatever presents.

People whose work I’m exploring to help me along the way include Dr John Sarno (whose books I first read years ago), Nicole Sachs and Alan Gordon. Importantly, none of this is about saying chronic health issues are imagined, but that the mind-body link can play a very significant part in how much, why and when symptoms come up.

So far, now I’m finally getting stuck in without that part of me that always remained somewhat cynical before, I’m surprised at how much has started to shift internally and at, let’s just say, the increased tempo at which certain symptom groups are moving through and out of me like a series of dramatic weather fronts, in-and-out in a matter of days, leaving a few deckchairs upturned but no serious damage, which is quite fascinating. Another sign being how I now hold interpretations of flare-ups more lightly and with curiosity, more so than with fear or hard assumptions. It’s still very early days, but I’m sure I’ll report back here as things continue to unfold.

Living with hEDS, at least in my experience, feels like my body is made of Substance A in summer and Substance B in winter and that there’s no easy intersection between them.

For instance (hear me out), I was reading about the Bayeux Tapestry the other day and apparently it was stitched by women working at opposite sides of the same piece, stitching towards each other and half of them working top-down. The clue is that, in some places, the scale of the figures and horses don’t really match where they meet in the middle. There are even scenes where an extra head pops out from behind a shield or ship with absolutely no body or legs attached below it.

That’s how my body seems, season to season: like it starts at two opposite ends but has forgotten how to meet in the middle.

So, while in some ways the intermediate seasons of spring and autumn can offer less physical stress due to fewer extremes of temperature and so on, which can make the possibility of having “a life” feel a little more within reach when certain symptoms like heat intolerance, orthostatic issues, nerve pain or rigidity ease, they are also, let’s not forget it, seasons of transition.

And for my whole neurodivergent body system, transitions are one of the hardest things to navigate. Something which seems to apply to my physical health as much as anything else.

While transition is taking place, it’s as though my whole body is in some sort of state of flux, like clay that hasn’t yet been fired, concrete that hasn’t set; it still doesn’t quite know what it’s made of and can’t be relied on. So I can spend weeks feeling like I’m made of a sort of painful plasticine, highly unpredictable, unreliable and unable to endure stress or load, leading to a myriad of minor and not-so-small injuries (for instance, just now, somehow injuring my foot simply walking across the kitchen barefoot making breakfast). Another classic is waking injured from rolling over in bed. I can spend weeks just fielding a series of injuries in such a season.

Then there’s the much-increased pain. Suddenly I’m confronted with muscles that hurt like I just did a spacewalk without oxygen, mast cells that go off like I did something other than merely exist to provoke them, an autonomic system that flips into 24/7 alert because it detects silent shifts in the environment that hardly anyone else pays attention to, like the fact the daylight got subtly shorter or the mercury dropped a couple of points.

And when the weather changes abruptly back and forth, as it tends to do in these middle seasons in this island weather system of the UK; when one day it’s starting to feel like autumn is finally here and then you’re suddenly thrown straight back into the mid-20s heat of what has already been a record-hot summer, my transition averse body having to catch up, its a lot. Then, a couple of days later, back into heavy cloud cover, moisture and chill, then another warm sunny day, then a properly chilly morning; all of which further confounds an already challenging process of seasonal transition.

So the body glitches out even more than usual, with symptom weirdnesses galore and widespread pain flares that are as abhorrent as they feel completely “out of the blue”.

Did I mention the fatigue? The utterly indescribable fatigue of living with a nervous system that feels like a very long series of reactions to external shifts that confound and challenge it is something else. Suddenly, for no apparent reason, I’m wiped out, as fatigued as if I just walked half the planet with a mountain on my back and all I can really explain it with is “this always happens about now”. All I can do is wait it out, not provoke or add to it, and tell myself it too will pass with the passing of the weeks into the next seasonal iteration.

For me these aren’t simply increases in pain or symptoms that I can necessarily work around either. I experience bouts of really impactful post-exertional malaise, and when the ME/CFS, autonomic and other symptoms escalate together it can become something of a falling house of cards, with my functional capacity dropping very quickly. Exceeding what I can manage can also produce a delayed and extremely disproportionate worsening afterwards, so there are times when even a relatively gentle physiotherapy session, doing some strategic mindfulness practice or going for a gentle walk is simply yet another exertional demand rather than something therapeutic.

The whole paradigm of such a body can only, so far as I can tell, get more symptomatic and complicated with age and especially during and post-menopause when oestrogen levels shift so dramatically (just like the monthly ups and downs used to create such an unstable baseline for facing up to so much external provocation; so that, for years before diagnosis, I tracked distinct “worse” parts of my months when I knew I couldn’t rely on my body to cope with much of anything, but now it’s just stuck here in the struggle part all the time).

Yet I read through all that I’ve written so far and realise it still sounds like just a minor glitch to live in such a body; a few weeks inconvenience. The words to describe the wholesale challenge of it frequently defeat me, whether I’m trying to describe it to a family member or a medical professional.

The reality is far more brutal than being a bit achier or more symptom-volatile when autumn turns unpredictable. When the weather itself becomes labile, with genuinely hot weather one day, grey clouds and SAD lamp the next, with temperatures and air pressure see-sawing back and forth, the whole system of me can become highly labile with it. Dysautonomia surges, sleep architecture changes, temperature regulation goes haywire between fans and hot water bottles back and forth like micro weather fronts changing every few minutes and even overlapping. A big clue, as is happening right now, my moderate HRV dissolves to ashes and for no apparent reason, given I’m being forced to rest most of the day. Tinnitus gets louder, like the fanfare of a flare, and light sensitivity, mysophonia, intolerance of certain textures get so much worse. Pain switches on severely for apparently no reason then dials back down again or moves to some other part of the body before you’ve truly got a handle on it.

Worst of all, as is happening to me this week, that crushing, poisoned-feeling ME/CFS style exhaustion and interoceptive weirdness descends like a toxic flu, leaving me flattened by a terrifying jelly-legged exhaustion and odd feeling tremulousness, trying to work out whether this is PEM, a particularly severe dysautonomia flare, another virus, a reaction to something I did and, worst of all, whether it’s a five minute flare to ride out or reentry into the long dark tunnel of crushing, burnout-level fatigue lasting months or years, as has happened enough times to traumatise me.

While to the casual observer I look perfectly fine like I’m taking a few days rest, internally I’m in terror that this might be yet another very severe setback and of course that anxiety hanging over me feeds back into the autonomic system but is very hard to avoid because it’s born out of uncertainty and there is absolutely no certainty anybody can offer you.

And it pretty much happens every year to some degree or other; decades of diary entries and blogs on this very seasonal topic. Septembers and Octobers of profound struggles and symptom oddities.

My own seasonal oddities first began showing themselves in my late twenties (and, when under school stress, in my teens, if I’m being honest) then, by my late 30s, they were already non-negotiable, kicking me unceremoniously out of anything resembling a predicable ability to work into the land of the medically unemployable. By mid-to-late 40s and now late 50s, these struggling seasons of my health, to which I can add the wobble of the early summer transition, pretty much came to reign over my entire existence. I have had to build my life around them, like an unwelcome lodger inhabiting my universe, paying them very close attention and respect, keeping such seasons very low demand; and not even that makes life truly or easily navigable through them.

So now I’m faced with summers significantly dominated by highly impactful orthostatic issues and the heat intolerance that grounds me, winters of intense rigidity and pain but, sometimes, I think the transition seasons are absolutely the worst, or at least the most disappointing, heartbreaking and even soul-destroying.

Because, at last, the weather resembles something it seems like I should be able to tolerate, days not too hot nor too icy, golden sunlight teasing me through the windows and yet the more unpredictable the days are, the more up and down, yo-yoey the weather systems, the choppier the transition becomes inside my body and the less viable, or even bearable, my days become symptomatically.

For instance, last week the weather that most people enjoyed as a summer bonus was, for me, an unwelcome interruption to the process of adjusting to cooler days. It has turned out to be one the worst pain and fatigue phases of the year because, well, it came so abruptly out of the blue, sandwiched between more normal autumn behaviours…and my body clearly doesn’t know where it is anymore. Before that, nights had got so much cooler, more bearable that I was actually sleeping without so much disordered breathing, hot flushes and wakefulness and enjoying a proper snuggle beneath bedding I haven’t tolerated for months. Suddenly, I was thrown back into the endless heat-adjustments, fans back on, sleepless early hours, body an utter wreck by morning. Electrolytes, salt and compression all back in the equation, orthostatic issues suddenly the worst they had been for months because the day before they had been almost non-existent: surprise! Dysautonomia across the board has been especially severe because, well, it came on so strongly and suddenly.

And even the things that ordinarily help can become less tolerable or reliable in the middle of all this shift. Salt that usually supports me, fans that cool me and help reset the vagal response, suddenly collide with the pressure headaches, nerve sensitivity and increased sensory intolerance that seem to come with the seasonal transition. For instance, right now, slow sodium, which has been my biggest helpmate of the year, seems to be provoking regular pressure headaches and trigeminal pain because external conditions have shifted. Fans that keep me upright in summer are provoking extreme skin sensitivity and white nose intolerance because my pain thresholds are already being exceeded, not helped by autumn UV levels or windy days on my walks. In fact, there’s no mistaking that my sensory processing differences create even more tolerance problems in the intermediate seasons than at any other time, as thresholds are crossed many times, back and forth, so there’s much less bandwidth left.

So routines around coping mechanisms get scrambled too, which marks a significant loss of coping capacity because this relies so much on having strong, comforting routines, knowing what you can reach for, what will reliably help. Suddenly I’m having to rethink coping strategies all over again, as though these are all brand-new problems to be fixed; because, in a way, they really are, every new season.

And when you’ve been looking forward to a less extreme season, fixated on that, having forgotten that transition itself is its own biggest challenge, the sudden slough of symptom weirdness “for no apparent reason” can land like a heartbreak. When autumn sunlight dapples through the window and you’re laid up in pain because your body can’t catch up with the subtlest changes of air pressure and daylight quota, all of which seem to act like early warnings to a system such as mine, the days are no longer benign but oddly challenging in ways no one else is likely to relate to and which, to you, are so real you could weep.

When you’ve been longing for a less extreme season, without the intense heatwaves that kept you trapped indoors lying horizontal with dysautonomia, and now you’re presented with severe pain and incapacity because the weather can’t make its mind up, it can be a lot more than a little bit devastating and demotivating because what else is there to look forward to. When what used to be the mildest seasons are now the most provocative, because my tolerance for transition has diminished over the last twenty or so years of chronic health, there is significant grief in that.

As weather systems get less predictable and more like a series of weather fronts passing quickly through than the familiar seasonal calendar of old, the childhoods where we learned to expect frost and snow at Christmas and those reliably middling British summers with just a few warmer days in between (not some tropical heat bubble that leaves us all a little bit punch-drunk for weeks, or oddly wet and undecided winters), all of our nervous systems get challenged. In an era where El Niño effects, Gulf Stream shifts and global warming do their unpredictable worst, that old sense of seasonal predictability feels harder and harder to hang onto. And if summers used to be more blah, with just the odd few nicer days we laughed about as “well, that was summer”, ironically I actually coped much better back then and I miss it profoundly.

I have to admit that as ageing and an unknown weather future come together, I feel less comforted and confident about my health future than ever. Because there are so few things I can do to try and control the situation of my health but throw in these curve balls and it’s all completely out of my control. There’s genuine panic and heartbreak buried in that.

And I do realise the nervous system plays a huge part in this but it’s not all of the story in a body where Substance A and Substance B already struggle to meet in the middle. I know I can do all the nervous-system work I can possibly summon the energy for, getting endlessly creative and clever with new approaches such as somatics and NeuroSym as I’m trying out at the moment, but I will still be working somewhat against the current of a body this glitchy and weather-temperamental and uphill against drivers that are largely outside my control. The loss of predictable weather behaviours and the ageing process that we are all having to deal with but which don’t always have such direct impact on moment to moment symptoms.

So I’m having to consider that the real power, such as there is any, is in noticing the patterns and living to my capacity per season, not trying to act as though every season is much the same as the next (or how it was last year…) or like my body can quickly adapt to what other people take for granted: it can’t, and I guess there is agency and some vague calm derived from acceptance in that.

It can be the beginning of living to a truth that has been wrestled with for far too long and the platform for a kind of grieving, a letting go of an imagined existence that has more agency, and then getting much more real with my actual body, not some aspirational idea I have worn myself out chasing for absolutely decades.

I suspect that, for me, such a regular set of reactions, to so-called ordinary seasonal transitions, has never really existed and never actually will, and there is a kind of coming to terms process that takes place when I finally say that out loud instead of skirting around it. At the very least, it saves me a lot of energy and crashing disappointment with my own existence.

Because I have that whole autistic struggle with social communication (though it flew under the wire for fifty years) I do now realise how excessively fatigued I’m made by it. So, since tumbling into ME/CFS twenty-odd years ago, I’ve become almost phobic about avoiding social strain, because for me this kind of exertion can be right up there with attempting to climb a very steep hill, something I wouldn’t even attempt because of the severe consequences, so why is this any different?

I already know that just pushing through it can throw me into some of the worst kind of longest-lasting post-exertion fatigue.

So it’s become an entirely self-protective mechanism when I seek to wriggle out of certain avoidable social demands and even some that are quite hard to get out of (most often, family ones), because when that self-preservation impulse joins forces with the pre-existing dread around social engagement due to my autism, it becomes quite a force to be reckoned with. If I ignore it, the combined resistance and anticipatory stress in me can become the very trigger that self-sabotages my ability to show up for the thing, because my body intervenes even if I struggle with saying the word “no”, pulling the rug on my behalf.

Lately, at least since autism diagnosis gave me the reframe, I’ve finally been getting much better at saying no before my body has to get involved, which saves a lot of recovery time.

What happens when I feel pressure is that the very dread of the social thing, the pre-grieving of all those familiar outcomes around how people tend to misunderstand me or misinterpret how I come across, the endless preparing of speeches and scenarios in my head, the running of numerous possible outcomes like a wall of videos in my mind, can be quite enough to crash me long and hard, even before the social thing itself has come about (the same way planning for some highly convoluted travel demand can fatigue me almost as much as the travel itself).

So when I feel this coming up on the horizon and I know there’s still some small chance of preventing the demand from unfolding, I tend to intervene by throwing cold water on the unwanted social suggestion, making myself busy or unavailable, even too unwell if I have to use that card (because I can almost guarantee something will flare up in a timely way). As a result, my life has inevitably become quite a tight ship these days, made up of a very predictable crew that I know I can pretty much sail along through life with, meaning my safe and most comfortable people, thus mostly avoiding the kind of choppy waters that might otherwise rock my health.

I can then add to all this social dread the general reticence I have around engaging socially because of all those other oh-so-convoluted aspects of my overlapping complex chronic health conditions: the highly unpredictable symptoms, the sudden crashes and flares that I can never truly plan or prepare for, the invisible disability that makes it so very hard to be understood.

Its true, not many people know how to take mention of hEDS, fibromyalgia, dysautonomia, Long Covid, ME/CFS, MCAS and of course late-diagnosed neurodivergence in conversation. The typical reaction to the very mention of them can make you feel like you just farted in a quiet room. Even as these things start to gain more media coverage, there’s still such a lot of disbelief, awkwardness and doubt around them (perhaps more so than ever right now, stoked by recent adverse media coverage around the so-called trend of disability encouraged by what has been labelled “sickfluencers” and the effects of social contagion; the kind of headlines that have had me spitting feathers lately). If I even try to bring them into the average conversation, the other person tends to sigh or roll their eyes; at least that’s how it seems from the inside.

Even some of my longest-standing friendships have fallen by the wayside the more I have opened up about my increasing disabilities and newly discovered neurodivergence over the years, meaning some of the very people I had assumed I would know forever have simply disappeared off the scene. Only one friend has proved to be the exception but there are still invisible limits to how far I can talk openly about how differently I actually experience my life from the inside before I feel I lose her engagement from perhaps spotlighting these things too much for comfort (for me, they are so central to everything its near impossible to avoid referencing them).

Yet she is also the one friend I feel no real dread around meeting because I know I can be myself without having to mask or continually monitor how I am coming across; in fact, I don’t believe I ever masked with her in forty years. And that makes a remarkable difference to what I am actually capable of socially when its her involved; my energy remains stable, I don’t take weeks recovering.

So with the right person, when I feel completely safe and don’t have to translate myself every second, I can manage verbal interaction extremely well, in fact it can sometimes be difficult to shut me up. It makes me wonder how different my social life might have looked if more of my friendships had ever achieved that kind of ease, instead of requiring so much vigilance and performance just to keep them going.

Other friendships have not weathered the shifts in me so well as I have got more real about my neurotype and my health status. Take for instance my very oldest friend from schooldays, who was going to come over to see me exactly two years ago, not long after I moved back into the area or, correction, she wanted to meet somewhere but I had to tell her how difficult it is for me to get out alone these days, so her agreeing to come here was the compromise. We had drifted for years, meeting only once briefly over all that time, on which occasion she was evidently dumbfounded by my revelations about the seriousness of my chronic health as, seeing myself through her eyes, I know I looked completely normal that day, so she merely looked taken aback and didn’t say very much about it at the time. I was hoping to get more open and real with her on the second encounter because it felt so important to me that we base the friendship on absolute honesty if we were going to give it another go.

So right before she was due to come over here for that proper catch-up I decided, in my wisdom, to come clean about my late-diagnosed autism and ADHD, assuming she would welcome this piece of my puzzle as someone who had known me the longest. If I was going to pick up any kind of meaningful relationship with her, I wanted to be completely straightforward and unmasked from now on and I honestly thought she would pretty much say “oh yes of course you are, I see it now” and then we would move on.

However, apparently this announcement threw her for a loop because I haven’t heard back from her since, other than the odd emoji on the occasional Facebook photos I post; no actual visit ever happened, no conversation around what I just shared, just silence. Part of me wasn’t even that surprised.

When this is the likely response to being straightforward with people, the desire to take that giant leap is so burdened with dread but then the desire and energy to continue to mask is non-existent, especially when chronic health is part of the picture. So what happens in my case is that I tend to predict that neither way will work out for me, so it’s far easier not to have the friendship at all. If I can’t divulge the truth of myself and have the relationship survive that, and I simply can’t keep on pretending to be something I’m not or put on a show of coping when I am really struggling with symptoms, then there is nowhere else left to go except to walk the path solo. I look back and see that I have quietly made this same decision dozens of times over until there is virtually nobody left; occasionally taking the risk of getting real, as I did that time around, but with it very seldom paying off. In fact I have tended to regard it as a necessary reality check because if a friend can’t take me as I actually am, or I don’t feel safe to divulge, then it is no real friendship.

If I’m honest, a big part of me sighed with relief when the friend visit didn’t happen because I already knew the likely cost of that so-called casual catch-up after so many years of silence (she never once enquired why I was being so quiet in the intervening years in spite of one or two attempts by me to keep in touch). The performance anxiety of it was already consuming me, not least because I am a very different person to the one she knew all those years ago. And with newer people the effect is much the same: so much effort involved, the whole back-and-forth game of self-revelation, constantly dreading the sudden rebuff when I get a bit too much for them to handle, especially when I share too much (a nervous overcompensation of mine, not helped by apparently still not grasping the more acceptable limits of polite revelation, even given I am quite the observer of human behaviour), or when I fail to conform to some idea of normal that I seldom ever meet, try as I might. My stamina and desire to even attempt “normal” is non-existent these days with so much going on with my health, and my autism is a Jack-in-a-box I simply can’t put back anymore for the sake of anyone else’s comfort.

So I would have inevitably put in days of preparation for something that looked completely effortless and then, during what was already pretty demanding of both of us after years drifting apart, my legs would have been paddling fifty times harder than it seemed beneath the surface, just to try and interpret all that nuance, to read the unspoken signals she would have been sending out (I read them all), the little looks and other clues about how she was really receiving me. Then the long inevitable post-mortem afterwards, dissecting every second of the encounter piece by painful piece for days or weeks afterwards, so still no actual let-up from the social event that, for her, would have been just a couple of hours of her time.

In other words, I knew I had just been let off the hook of all that and I already knew which was the better outcome for my health. So when she went completely silent, the visit mysteriously forgotten about, I simply let it be and took it as an inevitable, not entirely unwanted, outcome; more of the same as before, because so many older friendships have gone this exact way.

Yet over the years, I’ve also made quite a few friendships online and those have tended to work better, self-limited though they can be. One particularly deep friendship lasted for over five years and would have continued had she not got cancer, which hit me so hard. What worked so well was that she also preferred to keep to the online written format, not even wanting to video call, though I know she did with other people, which came as such a relief to me because it kept us on the level where I perform the best: skipping out all the nuance and getting in really deep and direct. We didn’t make time demands of each other either because we could fit in our relationship around our different time zones and still feel each other being there for each other when it really mattered, including me very-much for her in the later stages of her cancer. It was a game-changer for me as a new model of friendship and left me utterly devastated when she passed.

With this kind of social connection, even when it’s quite casual, I can pick it up or put it down depending on when I have the spoons, no hard feelings, no judgement if I go quiet for a while, and in most cases we would almost certainly have met over a shared special interest which made it, in many ways, a perfect fit for me, skipping out all the small talk. It’s one of the most valuable forms of connection that has grown out of my fifteen years of blogging, along with writing itself feeling like such a meaningful form of connection, because of the way people tend to gather around shared topics of interest. Inevitably certain people engage with my writing from time to time, so we chat, sometimes we get to know each other a little through back-and-forth comments and it genuinely fulfils that part of me that seeks meaningful community but very much on my own terms, because it doesn’t ever overstep the boundaries of what I am truly capable of given my circumstances.

Yet even these kinds of connection can backfire when these people, met arbitrarily online, suddenly want to meet in person in spite of hardly knowing each other beyond a few words here and there. For me. that’s a mind-blowing impulse because it has to be deep before I would even consider it. Even though I’ve tended to befriend people over long distances, Americans, Canadians, Germans and Scandinavians amongst them, this has happened quite a few times now and really thrown me a side-swipe that I haven’t known how to handle, because it really alters the whole premise of the relationship when “let’s meet” comes into the equation, breaking the very spell of why it all works in the first place.

I can confirm that the one time I did agree to meet up with someone from Facebook in the flesh, who was so excited to meet me that she diverted her UK trip to stay in a nearby hotel and built a whole day around it, she went away looking distinctly disappointed at the end but also quite perplexed by who I turned out to be in person, mannerisms, bluntness and all. Its true, I can come across so much more considered and somehow more gentle in writing, where I have time to process and shape what I mean, than I sometimes do verbally when my brain is having to do all of that on the spot and get all of my words out in the right order. I suspect I was also not quite the tactile person she had imagined from the warmth of my writing.

Evidently nothing about my world matched the picture she had painted of me from our back-and-forth messaging and I was left feeling quite rebuffed at her comments about where I lived (she told me point blank she hated my busy road, a circumstance over which I had very little control at the time) or even her barely concealed opinions of my husband who she clearly wished wasn’t around, pleasant as he was being about having her for dinner. She also implied that I wasn’t trying hard enough with my positivity over health, as if happy thoughts could have solved it all, or that I was putting some of my disability on when we attempted a very struggly walk around a local nature spot and my limitations suddenly became very apparent. The whole thing was bizarrely uncomfortable, likely for both of us, and thankfully never repeated but I was never really sure why it had to happen in the first place when things had been perfectly fine as they were. They were never quite the same afterwards.

So I guess that’s the danger of connecting on some intellectual, even emotional field and then trying to land back down to domestic reality; you might not even find that there is a point of intersection and my view is why even try, if the online relationship works so well? I’m not connecting with these people to discuss the road where I live or for them to judge the relationship choices I have happily made in my private life, in fact these things are not even open for discussion and I don’t mention them for a reason. Somehow, when people meet in the flesh, they often seem to think such things are fair game when I am not ever someone who is prepared to enter into that kind of arena with others, no matter how long I have known them; it’s simply none of their business what I do in my personal domain and maybe that’s also my autism speaking. This quite fundamental sense of my own autonomy and my fierce protection of my independence and privacy, away from the prying eyes of others or their uninvited input, is another reason in-the-flesh relationships often fail to work out!

Mostly, I don’t often want to translate those online connections into something physical but others tend to see it as an enhancement to meet, as though the online connection is merely a compromise when for me it is the main event. That difference in viewpoint feels quite fundamental.

So the part of me that is in such strong resistance to taking it further will only struggle and rebel internally like a spitting hissing runaway that has just been cornered and, if there is even one small part of me that is feeling physically fragile at the time, I will then get sick…almost guaranteed. This happened right after I arranged to meet with a Canadian and their spouse at a halfway pub when they were staying in London once and insisted on seeing me. I hardly knew this person at all, though they had become quite attached to messaging me and I was still in the era of instant capitulation to anyone who suddenly decided they really wanted to be my friend (an age-old trend rooted in deep childhood insecurities, born out of fierce conflict avoidance and a strong desire to keep the peace by people pleasing everyone). Now I was suddenly meant to spend a whole Saturday afternoon in their company making small talk. Instead, I genuinely had a flare-up and had to cancel last minute.

The same thing happened when an American I had loosely got to know through some very scattered back-and-forth comments, never what I would term an actual conversation, came to London and invited me to a gathering one afternoon, to which I dutifully attempted to go to because she strongly urged me, but we hadn’t even got the car warmed up before I was too unwell to go. I used to regard these undeniably genuine physical responses as some sort of failing in me, like an anxiety attack made manifest in the body that I was simply meant to get over but now, well, I prefer to honour that part of me that doesn’t want to meet under duress when what was already perfectly intact online was quite enough to meet me where I am at.

Years later, that same American happened to notice on social media that I hosted a small exhibition of my work from home and messaged me to say that if I ever held another one I “must” tell her and she would fly over and make a weekend of it. I know she meant this kindly but imagine my horror; my stomach literally dropped to the floor at the very thought (even my family know to keep away when I’m doing these things way outside my comfort zone). To open my home to strangers coming to view my paintings is social demand enough but then at least I get to hide behind the canvases, let them do the talking. By the end of the day, I am all but shut down and need of quiet time away from everybody. To have someone I have never met in the flesh fly in and make a whole weekend’s social demand of the very same weekend would be far too much for me to manage; the art event would have to go to make room for the friend.

So, what, I’m now forced to keep such events to myself for fear she will invite herself? Part of me feels reluctant to even mention another exhibition in case it ever catches her attention, bananas as that sounds.

Yet to others, I know, this kind of behaviour sounds neurotic and it did to me, for the longest time. Only very gradually, with the reframe of autism added to a lifetime’s worth of introversion and highly volatile health crashes and flares, am I finally able to interpret it all a little more sensitively and allow that it’s not actually wrong to feel this way; it just happens to be the way I am and that deserves to be respected, not beaten and bent into endless submission.

And whenever I’ve forced it, when I’ve shoved myself into situations, shoehorned myself into the social demand because I “ought” to, much the same as when my mother decided in her wisdom to drop me off at a party of five-year-olds I’d never met in my life to try and “socialise me” right before I started school, it has only ever backfired spectacularly. My body takes it as a direct hit, exactly the same as it does when forced into certain environments that highly overstimulate me or to eat certain foods that trigger me; eventually forcing me to acknowledge that they all need to be avoided the same way, in the interests of holding my health as steady as possible against all the stiff odds.

Which makes it almost ironic to me that just about every therapeutic approach I have ever attempted has strongly promoted the need to get social, to turn to community, to share the experience with others and do it all as a collective. Everywhere I turn, I hear this same message being drummed at me by some of the very same resources I find most helpful and yet this part of it, the absolute insistence on the social factor, is the part I most readily drop out of the equation, managing just fine on my own because to do otherwise makes the resource backfire more often than not.

I joined such a programme this month, which is a mind-body somatic and EAET approach for managing chronic health, allegedly neurodivergent-friendly too since the host is herself, and yet the insistence on the social part is there in spadeloads and I tried to ignore the fact because I wanted access to the course. So while I came into it with fairly high hopes for the programme contents, my biggest misgivings were all about the delivery mode, being via a group format of bi-weekly Zoom meetings taking place for three hours per week (when, by choice, I would have worked with this woman 1:1 but she currently has no places).

Three hours of group Zoom time in a week, for me, is one hell of a social step-up from my everyday life, but I was prepared to give it my best shot. However, as soon as I was just minutes into the first group call I felt completely out of my depth and overwhelmed, confronted with all those faces staring back at me, plus the need to prepare myself to speak in front of them at short notice (she promised me by email that she wouldn’t single me out but she did…which I had sensed she would, so I was basically tense, anticipating this, the whole time from the get-go). So I inevitably spent all my time preparing speeches and hyperfocusing on how I came across, not really taking in what the session was about, on top of which video calls always seem to drain me of energy just from being on them, even when it’s with my most comfortable and familiar people (as I discovered during lockdown) or if I turn my screen off. There’s just something about them that affects me profoundly in a way that replays don’t.

So by the end of this one I was utterly wrecked, my heart rate having been highly elevated for most of the ninety minutes and in a way I would never allow myself to try and sustain for more than a brief time if the same thing had happened on a walk, knowing too well it would lead to severe post-exertional malaise and dysautonomia. That night, my heart was still flipping out, I was in migraine-land and my sleep was a mess.

I then fell into such a deep PEM phase that I was still in the full throes of it three days later when the next Zoom call came around, and pushing through that finished me off completely. What followed was a week of very slow recovery from such a low baseline that it’s been one of my worst crashes for months. All this from something most people would consider completely benign, even helpful, supportive, beneficial.

So I did what I would never have had the nerve to do a year or so ago (much more likely is that I would have silently slipped away from the expensive course and never been seen again) and I contacted the host to tell her exactly what had happened to me and why; that it would be ironic if I ignored my own signals and pushed through in spite of such a significant emotional and physical response. I told her I would be taking part in my own time using the replays from now on and that I might not turn up in the group format at all but that I was perfectly happy to use the material my own way and contact her if needed. Thankfully, she was really understanding or I would have asked for my money back because I am no longer in the territory of forcing myself to do anything that doesn’t land right in my body just for the sake of conforming.

I have since come across a whole slough of written pieces with titles such as “Zoom Fatigue: A Taste of the Autistic Experience”, “Why Virtual Meetings Are So Hard for Autistic People”, “Zoom Versus Neurodivergency” and “What Zoom Fatigue Feels Like When You’re Autistic”, plus studies such as “Zooming on the Spectrum: Exploring the Relationship Between Zoom-Fatigue, Autistic Traits and Sensory Sensitivity” (Tilburg University), “Investigating Autistic Traits, Social Phobia, Fear of COVID-19, and Internet Use Disorder Variables in the Context of Videoconference Fatigue” and “Nonverbal Mechanisms Predict Zoom Fatigue” (Stanford University).

While not all of these completely land for me, some of the issues described very closely match my own experiences, making something that is often promoted on its accessibility merits more like the very opposite in my case. In fact, a lot of the things that cost me energy in any live group conversation are not only still present on Zoom but somehow concentrated by the video aspect. Instead of being in a room where my gaze can roam naturally and people exist in my peripheral vision, I’m faced with a wall of close-up faces arranged in boxes, all seemingly directed towards me, while having my own face reflected back at me as yet another thing to monitor for whether I am looking engaged or reacting appropriately. The effect is much more intensifying than being in a room where I can move around or excuse myself for a while.

At the same time, some of the information I normally use to work out how people are receiving me has suddenly vanished. I can’t take in whole-body posture, subtle expressions, small physical shifts around the room, register who is reacting and how, who looks like they are about to speak, or access that second sense that tells me whether what I am saying or doing is landing well or appropriately timed. Instead, I am somehow flying blind in an unfamiliar sky. So in a sense Zoom leaves me in the peculiar position of having too much social information bombarding my senses yet not enough of the particular information I need and rely on.

Then the very strange reality of being expected to deliver personal thoughts into an open void whose safety I can’t assess is all strangely unnerving. In person, I can pick up a huge amount of data about the people I am dealing with, which is absent when there is a screen between us so I am forced to do it on trust alone. Meanwhile, the whole social performance part of the equation is still there demanding my best effort while I am being wholly distracted by the screen aspect and the sense of being faced down by a jury of social witnesses. It’s an aspect of social engagement that, while still there in a physical meet-up, feels so much more concentrated on camera.

I have also given myself permission not to force engagement in the social forum associated with the programme unless I really feel called to, and to basically do the whole course my own way, in the solo, with no need to share what I’m feeling or thinking with anyone unless I expressly feel it would help which, knowing how private I tend to be about my inner processing as it’s happening, I find quite unlikely. Although I’ve engaged in such forums in the past, I now find them some of the most abhorent, energy-draining and unrewarding places to be in and I really can’t manage the small talk about pets and such any more than I can in a physical room full of people. Which is perfectly alright: I’m allowed to have this opinion and just let it all go as not a good fit in my case.

I’ve finally realised that I have to choose what works best for me and let that be enough, not keep forcing the social aspect to please other people. I honestly believe this goes for all of us who are wired differently and especially if we are also trying to navigate extraordinarily complex health pictures that take up extra resources in ways that other people can’t readily comprehend. Even in a group with other chronically ill people, its not at all possible to assume that everyone else is dealing with the same issues, the exact same health or communication challenges and energy deficits.

We simply don’t have to keep apologising for who and how we are or having to explain the “why” of it all.

What actually happens to me, in learning spaces that are also social spaces, is that my energy quickly gets siphoned off to the cause of social survival and I’m left with little to nothing for the actual material I’m meant to be engaging with. Or, I end up trying to summon the energy for both at the same time, which is utterly exhausting, borrowing from tomorrow just to get through today, so no wonder I can come away from them feeling just so excessively exhausted that it takes days or weeks of recovery.

It’s the very same thing that drained me of resources at school and in every single office I ever worked in, leading to the kind of excessive fatigue at the end of the day that I could never quite make sense of at the time, but now I see it. No wonder I have the sense of a whole lifetime spent pushing through long accumulated fatigue; so many long decades of burnouts that kept on repeating, and would continue on still if I didn’t intervene at this stage. I’ve been having to summon almost superhuman resources to manage everyday social demands that other people take completely in their stride, not least since health became chronic, but enough with all that now.

So this time, on the course, I stood up for myself and made the accommodation happen. When the online casual friend popped up again this week saying “Hey, I’ll be in your area (meaning ‘the UK’) for the next few weeks” I sent a smiley emoji and let the conversation go. When people still coerce and cajole me that I would do better with some more social engagement in my life, I let them have their opinions without always feeling I have to convince them or explain why my quiet life works, giving them the Mona Lisa smile without another wasted word. And when I sign up for another health programme but it headlines that I won’t get anywhere with my recovery unless I do it in community, I let the useful parts of the material in without letting the subtle nocebo of that message trip me up in my belief that the material might still be useful, in spite of me engaging with it in my own individualistic way. Because mine isn’t a second rate version of engagement, its just simply mine.

More and more, I’m learning that access is not about forcing myself into the available format, but recognising when I need to shape the format around the way I actually function. I’m letting myself choose what feels right to me and, just as importantly, reject what doesn’t, without automatically turning that into the next thing that needs working on, apologising for, or taking as some negative reflection on who I am as a person. It is perfectly valid to connect in whatever way happens to work best for us, and to whatever degree leaves our energy and other resources intact and, in my own life, I’m so done defending that choice or beating myself up about it.

So I survived my five days in London visiting family, as was being planned last time I wrote, and for anyone following the thread, the last-minute replacement hotel worked out pretty well. It was quiet and tucked away, a sort of home from home in the city, which suited me very well given quiet village life is what my nervous system is used to these days. I’ve found staying anywhere that too closely mimics my old house, from which I moved three years ago due to ever-increasing road congestion from new housing, can very quickly trigger an almost PTSD response in my nervous system from traffic noise alone (as I found to my detriment when staying in an unfortunately located Airbnb a couple of years ago, where I more or less buckled under the sensory strain). So the fact this one was tranquil, uncluttered and pretty chill was the thing that facilitated all the rest of my coping mechanisms while away for so many nights, dealing with far more stimulation than I am remotely accustomed to any more.

It was also a success because I did most of the things I’d planned, I enjoyed most of what I did and saw, and my hypermobile body mostly held together and actually coped far better than I could have dared hope a few months ago, helped by slow sodium, electrolytes and a whole lot of compression/support garments and kinesio tape.

And, by and large, with the help of taxis everywhere, very diligent pacing, pre-planning the logistics pretty much down to the letter and setting realistic boundaries, it went off without a hitch and I got back Monday, tired but heartened.

Or at least that’s how I felt until, as per usual, a procession of physical issues began to roll on in from Monday evening like a series of fairly challenging weather fronts: intense muscle and joint aches, sensory hypersensitivity, headache and, oh yeah, my stomach completely packed in, my gut lining so bizarrely sore in spite of holding out for most of the weekend. Delayed reactions are very-much my speciality!

This is another hypermobile-dysautonomic foible of mine, being that my gut motility can be pretty sluggish most of the time but then often completely stall after its been put through its paces for a few days. Even then, this stomach flare was something else and had me wondering about gluten exposure, lactose, the possible return of SIBO (something I struggled so much to get under control after long COVID brought it back with a vengeance last year) or some other ingredient exposure that hadn’t agreed with me. All I knew was that I was very badly bloated, intensely sore and my food conveyor belt was now completely out of order, a sign hung on the door, and none of my usual tactics, from ginger to cat-cow, was apparently able to fix it quickly.

Basically, nothing was moving along for days and, while I almost laughed about it in a black humour kind of way to start with, having so-optimistically thought I had got through the five days of alien meals unscathed, I certainly wasn’t laughing by the end of a week of small, bland, fairly mushed-up meals of scrambled eggs and potato.

This wasn’t the only thing playing me up in the aftermath (I even wondered if now having the time to notice what was going on was the real issue), but it was certainly the most dominant. I was also aching from all the extra walking and standing, facilitated by diligently wearing of my SI and torso supports every day; items that are as constricting as they are useful, meaning that, after a run of several days’ use for many more hours than usual, the supports themselves can start to add to the pain quota.

Yet even this wasn’t the only factor behind my sudden intense post-exertion pain because there was also a kind of internal rigidity left switched-on in my system that simply wouldn’t step down; an inbuilt hypertonicity that hadn’t got the memo that I was home now and that it could finally afford to relax. No amount of lying around with legs elevated, warm baths, magnesium or sleep would do it; it was just stuck in the “on” position and had that distinctly autistic quality to it, as in that almost dogmatic insistance that I had to keep on keeping on, come what may.

Even though I was back in my own bed, with my usual support pillows (sorely missed while we were away), something wasn’t agreeing to climb down and surrender from its sentry duty, however hard I tried with relaxation techniques. In noticing this, I realised for the umpteenth time how utterly typical this is for me after any “outside” excursion, be that a concert or social event or a full-blown trip of a few days’ duration. The part of me that regards its primary job as keeping me safe doesn’t easily surrender its role and relax once I get back to my normal domain, and this can be another major factor feeding into the costly aftermath.

It was all too easy to fall back into the habit of combing meticulously through everything we had done while we were away, looking for some mechanical cause and effect, like a needle in the haystack, that had triggered these symptoms, also fishing for practical steps I could take to make it better. With my stomach so excessively bad, even for me, I even ended up emailing the hotel and a couple of other restaurants asking about hidden flours, fillers and other ingredients to try and get to the bottom of why I was having such an over-dramatic gut response that otherwise made no real sense now I was back at home.

But there was clearly something else going on here, and it’s taken me a few days to fully accept what a big part it was playing, regardless of any of the more “logical” causes I could come up with.

It came to me from slowing my runaway analytical mind right down and re-reading the body signals through the neurodivergent lens with the objective of better understanding the bigger picture. By taking fuller account of the toll, specifically, on my autistic nervous system as its own primary “trigger”, rather than considering it as just an afterthought or part of the AuDHD/hypermobile mix, I really began to get somewhere with small but measurable improvements.

Because it was all there in terms of autistic sensory triggers: from vibrating trains to highly overstimulating stations to the massive swarming crowds of people crossing paths with me as I was trying just so hard to walk in a straight line without incident when I got to my destination. There in the kinds of fumy, siren-screeching, horn-honking traffic congestion I haven’t experienced through the open window of a sickly air-freshener-infused taxi, gridlocked in a twenty-minute jam on the way to the hotel, since moving north and, really, not since I was last in London four years ago. There in the form of one (sometimes extremely hot and noisy) cafe or restaurant after another; and not one single meal eaten in genuine calm or in my own enclosed environment at my own pace. Then even more taxis (ten in total) spread over five days, because I can’t easily manage the tube with my particular disabilities and POTS without travel taking everything I’ve got. And breakfast eaten every morning in a room sat almost elbow to elbow with other hotel guests, having to communicate my very particular needs to highly distracted serving staff before I’ve even properly landed in my body.

Then there was having to navigate a long series of often highly complicated menus, endlessly tasked with trying to isolate the safest foods on the list, dealing with situations where carefully preplanned menu choices (I always do research in advance if I can, so I’m as well-prepared as I can be…) were suddenly off limits because of a pan shared with gluten-containing items or because they changed the menu last minute. Then the hotel not bringing me my requested separate bedding and extra pillows, even on the fourth time of asking, leading to repeated communication frustrations, increased overwhelm when already over-tired needing my urgent nap, and having to rely on makeshift sleep arrangements that first night before the items I had requested finally materialised on the second day. Having to learn to sleep in a shared bed again after months of sleeping alone at home, navigating how to do that with makeshift back, neck and pelvic supports and the impossible reality of trying not to disturb my husband’s sleep or take up too much room with all these things; really, ending up held rigid all night because I was trying so hard not to be a bother or fidget. The result being that I spent my nighttimes, as well as my days, in a highly braced state, never fully relaxing.

The trip wasn’t emotionally neutral either, as it seldom is when family are involved. Even though it turned out pretty well, there was a degree of tension running underneath it all, a watchfulness in case something difficult should happen that I would need to rise to, which meant another layer of me was never entirely off duty like I would be at home. The sheer adrenaline it can take to get through situation after situation when away from home, even the mere fact of standing up more or walking around for many more hours if dysautonomia is part of the picture, can become a baseline that the body comes to rely on for staying upright and keeping digestion moving, so that once you get let off the hook back at home, with adrenaline no longer required, that’s exactly when it all falls apart and everything stalls.

Throughout the entire trip, I was clearly dealing with such a lot, sensorily, however much I was enjoying myself, something which deserves to be fully acknowledged, not just brushed off as “the trip went generally well”. In fact, my nervous system seems to be demanding, at the top of its lungs, that I absolutely need to take some time out now to properly sit with everything I have just been through and honour it, respect it, breathe through it before I just let it all go as if it was really nothing exceptional to be put through, when it clearly was. At least for me.

Because the whole time things were “going so well”, my autistic sensibilities were sustaining such a lot of overstimulation and not really getting the full attention they generally need, suspended in a perpetual state of “you’ll just have to wait until later”, the only other alternative being to go home and abort because there is only ever so much that can be accommodated before a trip isn’t a trip at all. Also because I was so distracted, in positive ways as well as less-than, given my ADHD need for novelty was feasting hungrily on so many buzzy, lively, visually stimulating experiences (oh AuDHD contradiction that I am) that it was busily having the time of its life.

In fact, there was one point when I truly played witness to the constant contradictions in myself as they unfolded in real time. We were sat in the cafe of a central London art gallery and, while the rest of my small party chatted, I was pulled right back from the conversation, quietly noticing how much I was internally buzzing as I watched all the different people around me caught up in their little social interactions, especially getting high on the intense acoustics of so many blended voices filling the space in such a lovely unthreatening environment; a small controlled exposure to the kind of positively stimulating sensory experience I don’t often get to encounter in my extremely quiet life and which I miss. Or at least I was getting some positive stimulation from it…until, suddenly, I wasn’t.

Something must have passed its tolerance threshold: perhaps I suddenly realised I hadn’t put in my earplugs or that I had taken in one extra moment of high-pitched sound or a movement too many, because my nervous system suddenly buckled into the familiar state of dysautonomia. Here was the usual dizzy-headed brain fog and eye-blur, a sudden cliff-edge of fatigue and an intense hot flush coursing through my entire system at great speed, needing me to grab my neck fan out of the bag to blow cold air at my face, an emergency measure I use such a lot these days as a rescue remedy. It’s almost like a panic attack when it happens, only there is no mental or emotional panic going on, just the sense of a sensory threshold having been suddenly transgressed.

The thing is, the line can be extraordinarily thin these days: one minute I’m perfectly okay, the next I’m drowning and, unless I notice the transition, the effects can quickly escalate in some highly physical ways, with consequences that last all the longer the slower I am to notice and do something about it.

Mostly, I’m pretty good at noticing these days so the long aftermaths are getting rarer, the sensory hangovers less severe. Increased self-awareness plays such a massive part in this.

However, London is just so distracting; perhaps more so than any other place I know. The sheer feast of colourful, interesting, often jaw-droppingly beautiful things to look at across a long weekend of parks, galleries, fascinating interiors and so much delicious architecture has topped me up to the brink (I adore art and architecture and came home with over 2000 photos of tiny details most people would likely overlook because this is what I do; my special interest). Since I got home, it’s led into another few days of poring over my photography, making order out of all the different shots I took, optimising and uploading them (something else I do as a primary interest that can absorb me for countless hours at a time and which is only ever properly fed when I get to go out into the world and collect new visual experiences). In this way, I am very much a sensory seeker and not wishing to shy away from the world at all since it feeds, stimulates and energises me with extreme joy and creativity.

In other words, my ADHD part has had its rare gallop outside of the stable this week, enjoying every moment of the trip and bringing home something else to entertain it for a while, but what about the autistic part of the equation, the part that is far happier left at home grounded in routines? The part of me that spent ages planning the trip to make it safe, which then tried so hard to keep some semblance of routine and predictability even when we were far away from home for those few days, but which has been dragged along on the same sensory ride?

Now, in the aftermath, that’s the part of me that is far slower at catching up with everything that just happened, almost like the majority of that sensory data only truly arrives as a delayed reaction once I’m home with a bit more time and space to process it all. A big part of it, I finally realise, is simply me not even noticing the signs of bodily distress in the moment, to the degree I’ve been doing a dance with the question “so, how impactful is my alexithymia?” lately, because I strongly suspect I’ve been underestimating it for decades. It can be a bit like watching a crash dummy hitting a wall in slow motion in the days afterwards, when everything finally catches up with me.

There are so many contributing factors to a health flare in my case, making it very hard to single one or two things out and point the finger. Different bed, unfamiliar food with hidden ingredients, a lot of extra upright time with hypermobility and orthostatic issues; all of these things and more can genuinely flare me afterwards. However, I can also see how this sensory-emotional factor related to autism is sat there in the very middle, not completely obscured by the practical reality of my often quite hypertonic muscles acting like braces for hypermobility, because autism also contributes to the relentless bracing of my body against the forces of unpredictability, the micro meltdowns and shutdowns against the tidal wave of newness and chaos (although these mostly tend to happen internally, should I say politely out of sight, these days, manifesting almost entirely through the physical domain; hot, cold, tired, in pain). So it plays its own key part in factors that could so easily look like nothing more than physical foibles, but which are actually quite inseparable from the particular way I am “wired” to experience the world.

These autistic foibles, I strongly suspect, also tuck themselves behind the predictable breakdown of my digestion every time we go away from home, faced with “the unknown” in terms of ingredients and environments, with so much tension held in the gut in anticipation of these things that digestive breakdown is more or less guaranteed because a tense body seldom digests anything well. It’s behind at least some of the PEMy fatigue that inevitably gets trip-wired on these trips from not getting enough time off from doing so many different things without much respite, because my autism melts down and burns out more than any other part of me when overstretched. It manifests as that overarching feeling, this week since getting home, that I have literally nothing left to give, that I’ve vocally dried up, that even one more sensory excess like too-bright sunshine in my eyes or the doorbell ringing unexpectedly, would be too much, right now. That, for the moment, I’ve used up all my bandwidth and then some.

And, in hindsight, I know that I didn’t use my sensory survival kit as much as I should (or would normally do) while I was away; didn’t use my earplugs in every noisy environment like I would at home, shunning them in preference for acting like I didn’t need them today (it was as though part of me was just too hungry for the full London experience to block all of it out, which in the moment of experiencing the “high” can make me very blasé and reckless, thinking I am coping better than I am). I allowed myself to be driven through, or walked past, sensory extremes I would normally have studiously avoided at home “because it was London”, sucking them up as part of the essential London experience, like some sort of full immersion subclause that made for entirely different rules.

So, although I’ve got really good at taking care of my autistic needs lately…in fact really very good indeed at self-advocating and doing the right things…I suddenly let some of that go slack on this trip, even while knowing these things are exactly why I survived Edinburgh so well, my last experiment, earlier in the year.

That part of me, the devil-may-care, highly impulsive ADHD part that is just so thirsty for an experience, was basically saying “I want to enjoy all of this right now, without so many provisos, so just bill me later”.

Perhaps part of it was being so out of practice with city breaks (Edinburgh excepted) that I quickly fell back onto old habits, but I can’t really deny that a big part of me really wanted to suck up the whole experience, to fully immerse in it, to make an exception to my own rules, forget about disability as much as I could, sideline some of my neurodivergent accommodations when they were inconvenient and just drink from the cup of normality for once. Which, for the large part, I did, and technically survived, but now comes the big payback, which is fine as long as I always know that payback is inevitably coming.

This is the part when my AuDHD contradictions come starkly into view and the bill slaps down on the table. This is one of the rare times, in my second half of life, when I get to taste all over again what my younger self so frequently put my younger nervous system through, resulting in so many autistic burnouts and health undulations, in pursuit of hungry satisfaction for the other end of its seesaw (the ADHD part). Then inevitably having to deal with the physical consequences when, in the aftermath, the much slower-arriving autistic objections came home to land. Which is pretty much how my teens, twenties and thirties played out on endless repeat, before the biggest burnout landed in my lap and stayed.

And rather than fight with it anymore, I now wryly accept these contradictions about myself, and I make space for the paradoxes and inevitable recovery phases in the aftermath (while doing what I can for damage limitation in the moment). I do what I can to support my nervous system through it, and I cross my fingers that the payback doesn’t take too long or use up too many precious resources; and that it’s worth it in the end, because sometimes I just need some variety in my life.

Here’s what I notice when I frame things like this rather than how, in the old days, I would become utterly fixated on solving the medical mystery of an aftermath health flare-up.

As soon as I start to work with things this way, honouring the autistic ordeal I’ve been through, even while I celebrate how much enjoyment I just extracted from doing whatever it was, things subtly shift gear in a way that feels meaningful.

As soon as I even slightly acknowledge that my autism had needs that haven’t always been attended to these last few days and offer it a voice through my awareness, things start to change for the better. As soon as I thank that part of me for doing all the planning, for working so hard at keeping me safe, for bearing with me, coming along for the ride without having a single disruptive meltdown during the trip, it starts to relax. Once I start slowing down and really paying attention, listening to what the autistic parts of me need right now in the aftermath, fulfilling the promised return to safety and routines (not launching straight into some health crisis to be solved…), and doing my very best to deliver slower, less sensorily-overwhelming days or social, even verbal, demands when I don’t have capacity, something internally starts to calm right down and shift.

In fact, on doing this so diligently, now on day five of aftermath (exactly proportionate to five days away), I am only just starting to experience a distinct shift in my muscle tone today, finally, like what was so rigid has suddenly let go and is now pretty languorous, remembering at last how to relax. So I want to encourage that: today is not the day for trussing myself up with more supports and making myself go for a walk or taking on demands. Today is a day for capitalising on the surrender, allowing softness to be safe, absorbing myself in whatever feels most nurturing, nourishing, calm and safe. It’s still the very early stages of recovery and could take me a week or so to find my baseline again, but at least I now feel like I’m headed roughly in the right direction and not still stuck in crisis management.

Even just immersing myself in autistic perspectives again…listening to favourite podcasts and comforting, familiar audiobooks on neurodivergent topics (things like “Looking After Your Autistic Self” by Niamh Garvey do it for me because I know it backwards but always get something out of feeling seen and the calming delivery); just generally diving back into the kind of material that acts like a soother for my nervous system can be a really big help. Throwing myself back into my special interests without any pressure, allowing myself to hyperfocus on something positive so long as it’s not utterly exhausting to me (things like writing this post) can act as a giant safety cue and help downgrade the physical crisis.

All of this can work wonders in terms of dialling down all the latest physical anomalies that were about to become my latest worry project or research angle, without having to even go there with trying to play detective as regards why the symptoms happened in the first place or how to fix them medically. Muscle pains start to come down of their own accord, rigidity melts away, digestion starts to miraculously work again and, slowly but surely, things start to calm right down and rectify themselves without huge effort. Each time I remember this anew, it’s like a revelation all over again.

The degree to which this can be effective just goes to show what a huge part the mind-body connection plays in a lot of my own flare-ups, which isn’t to say they’re not real but that there is always more to them than what obviously meets the eye. It’s not always about having eaten the wrong thing or injured something through overdoing it, requiring a postmortem. It doesn’t even take following elaborate protocols to do with meditation, visualisations or vagal stimulation, even though those things can sometimes prove helpful along the way. Far simpler than all that, it can sometimes simply take making the single gesture of showing myself that I’m still here for my autistic self, that I’m still attentive and listening, doing what I can to provide what it needs to come back down to ground and feel less overwhelmed, overstimulated or under threat. I can simply be its best landing pad, the steady continuum waiting to receive myself when I get back home.

What a week so far: I’ve just had to cancel the hotel I’d been booked into for months and find a suitable replacement at the eleventh hour, undoing all the careful planning that helps me feel safe enough to travel in the first place. Not my comfortable place, as someone who has to plan everything way up ahead; to walk through it, feel into it, rehearse and minutely visualise every single detail before I go anywhere. All my internal “videos” about this trip are set in this particular hotel and going for pre-planned meals nearby, and now we’ve had to completely change locations I’m right back to square one.

Obviously, it would take a great deal for me to unpick months of autistic strategy like this, so why would I even do it?

Because I wrote ahead to the original hotel, carefully chosen weeks ago for its well-advertised comfort level, and specifically asked (amongst other things like a bath and hypoallergenic bedding) for a quieter room but also a light, bright room with a view, because I spend a great deal of time lying down recovering between excursions. I also made it quite clear that I don’t use a wheelchair and can manage a lift or stairs, provided I’m not navigating some exceptionally narrow back staircase or put on the very highest floor.

After much deliberation, I paid a significant premium for one of their best and more spacious rooms, with features that actually matched my requests, and booked months in advance. I emailed my not unreasonable criteria well ahead of time and followed up again this week, precisely to make sure they understood what I needed, because all I had had, so far, was a very flimsy “we’ll do our best”.

In fact, if I hadn’t pressed again for the specifics, I might not even have discovered what they had actually allocated until I arrived.

Because quietly, behind the scenes, they had already allocated me an “easy access” room on the ground floor. A room that, with minimal research, I was able to find out from reviews was facing a wall in one of those outside “courtyard” areas where people congregate to smoke, right next to a noisy kitchen extractor fan, immediately adjacent to a building site next door with clanking scaffolding and early-start workmen. A room recent guests have described as extremely dark, dank, dreary, depressing and noisy. We stayed in such a room last summer, for my daughter’s graduation, and it had me crawling up the walls, hardly able to wind-down or sleep.

In other words, almost the exact opposite of what I had asked for.

And for someone who needs to spend hours in the daytime lying down recovering, being put in some dark room staring at a brick wall, tuning into all the building site and kitchen sounds and smells, with an industrial extractor fan whirring away, would set my teeth on edge and has nothing to do with a minor disappointment regarding the view. Such a room fundamentally changes what that room allows me to do.

My room is my respite from the physical and sensory overload of being out and about, somewhere I need to somewhat approximate the quiet comfort and steady routines of home, so I have any bandwidth left at all. My sensory body is basically a tiny cup, and when that cup gets overfilled, I need to be able to empty it out for a while before heading out again, not just keep topping it up with even more stimuli.

I also need to lie horizontal to recover from profound orthostatic issues but, without something positive to look at and some natural daylight to keep my circadian cycle intact, even when I can’t be outdoors, rest becomes restriction not recovery; a drain instead of a therapeutic resource. The fact my body has run out of resources doesn’t mean my head will just naturally settle and for that I need positive daytime things to distract and regulate me, like a view out of the window, not some artificially lit bolthole staring at the wallpaper. In fact, lying there in artificial lighting during the daytime because the room is so dark adds one of my most impactful sensory triggers to the equation, crashing serotonin levels and leaving me in even more overstimulation and pain.

I also need maximum quiet and sensory neutrality to properly wind down and, without these things, dysautonomic issues, mastcell flares and pain levels quickly escalate. Kitchen noise, voices, cigarette smoke, extractor fans and food smells are the direct opposite of the kind of sensory quiet that signals safety and respite to my nervous system, especially when travel makes me run perpetually hot and borderline nauseous.

In other words, I need that room to help put me back together enough to continue with the trip at all. If the room becomes the drain, I have no chance with all the other demands travel makes, and this is what I believed I was protecting myself against when I chose a premium hotel rather than a basic room, as it’s about so much more than a bed for the night.

It’s why the choice of accommodation is my primary access need; the one thing that (I’ve learned the very hard way) can enable or disable me the most away from home routines and comforts.

But all the hotel would say when I pushed back on my requests and the reasoning behind them was, “we’ve considered your needs and decided this room is best”; no discussion, just the option to cancel if I didn’t like it. Not because they didn’t have other rooms in my price tier available with some of the very features I’d asked for either, because they confirmed that they still had two available with a bathtub and lift access, but because “they had decided”. It was as if access to those things was suddenly sealed off from me as soon as I used a particular trigger word beginning with “d”.

They had apparently pigeonholed me as disabled and that was all they could now hear, and whether it was something to do with a statistic or concerns over evacuating me if there was a fire, in spite of my ability to manage stairs, they had apparently made up their minds as though every disability obviously comes with a wheelchair.

When I said no, this wasn’t what I wanted, they simply wouldn’t budge. They just insisted this accessible room would “best meet my needs” and stuck unwaveringly to the script.

Except they weren’t my needs.

It was all too similar to my holiday last year where I had put in the booking notes of some restaurant that I don’t have a nut allergy as such but specifically can’t tolerate almonds and yet, when it came to desert, they wouldn’t serve me a single one, not even a sorbet, because of possible nut allergens in the prep area (though they didn’t raise this as an issue with my mains). No amount of “discussion” would convince them to see reason that a cross-contamination wasn’t going to lead to them being sued, so I walked out spluttering, leaving my husband to pay the bill.

I’d been trying to get so much better at naming my access needs out loud by that point; in fact, I regarded that particular holiday, in the wake of diagnosis (having got my “congrats you're autistic” letter the very day we set off), as some sort of field trip for practising speaking up for myself more often. Now, at the very first hurdle, I was left so enraged at being patronised, like I didn’t know the limitations of my own body, the manager addressing my husband like I was a child, that I was rendered almost mute in that moment, losing the use of my words exactly when I most needed to be articulate (I later sent them an email and shared the full encounter in my review). The whole thing put me under incredible duress at the start of our holiday because being misunderstood has become borderline CPTSD territory after a whole lifetime of it, something that can replay in endless loops in my head afterwards, particularly when left unresolved.

It’s why I like to get all the kinks ironed out well in advance, in writing, which is my communication strong suit; another access need, but it doesn't always work out, as this latest scenario has demonstrated once again.

There is something peculiarly disorientating about explaining yourself carefully and then being told, in effect, that somebody else knows what you need better than you do. This is what happens when the word disability becomes louder than the disabled person trying to convey what they actually need.

When disability conjures up a blanket idea of what “accessible” must mean, and that one-size-fits-all version of safety overrides the person who has actually told you, in considerable detail, what enables them to function.

It is what happens when nobody really listens to your highly individual needs, the very ones you are asking them to accommodate, because somewhere along the line they have presumed disability is principally about legs.

Whereas the things that disable me most in a hotel room may be precisely the things nobody can see when I walk through the door.

For me, a quiet room with natural daylight and something to look at while I spend hours lying down recovering isn’t some frivolous preference sitting somewhere beneath accessibility. Nor is the bathtub I use for pain management and because a shower, when you have POTS, is a liability. It is all part of accessibility, if anyone would care to listen.

And all this planning isn’t me being precious or wanting everything just so. It is the invisible work I have to do in order to make travel possible at all.

Which is perhaps the part that stings most. I did everything you are supposed to do. I booked months ahead. I paid extra. I communicated thoroughly. I checked and double-checked. I explained myself and my needs in detail. And all of it appears to have left me with a worse outcome than if I had simply booked that same category of room at the very last minute and kept completely quiet, taking my chances. Like I have with the replacement hotel, where I’ve deliberately kept disability out of the script (which may make my chances of getting a bath or a quieter room proportionally slimmer, but I daren’t risk the alternative, such as another dingy basement room).

Last time we stayed in a hotel, I kept the “d” word out of it, and we managed to get a room upgrade with a tremendous view. However, while we were staying there, I happened to read a negative review written by someone with disabilities allocated an accessible room with a door straight onto the busy public street opposite the main Edinburgh train station, describing how it “felt incredibly unsafe, noisy, and completely lacked the security and atmosphere you expect when booking a reputable hotel”. They went on to describe how they had to wait outside in the cold for ages, late one night, when their access key failed, and reception failed to answer the call to let them in, and all I could think of was “that could so easily have been me”.

Maybe that cursory tale is another reason why I wouldn’t back down this time around and chose a different hotel rather than risk the accessible room in the first one.

In other words, for the umpteenth time in my life I’ve been taught, the hard way, that sharing my needs sometimes makes things a lot worse. I’ve had it reinforced so many times that it can be far better to hold my tongue and act normal (which, now I see the trend, has me spitting feathers on a regular basis because I really shouldn’t be cornered into masking like this, against my own instincts to be straightforward about what I need). At least I can get away with it while I don’t have to use a wheelchair, though getting one was a likelihood we were seriously considering just eighteen months ago when I was really struggling to be upright; but I still shouldn’t have to pretend my disabilities away to get what I really need.

Because, oh irony, the one piece of information I gave the original hotel to help them understand me better was the very thing that seems to have made them stop listening.

Which only reinforces the faulty idea that keeping ourselves shtumm leads to the better outcome, because apparently it mostly does, compared to putting ourselves in the hands of others who don’t even try to get it.

That’s the bitter paradox of disability disclosure. You disclose because you are trying to give someone the information they need to accommodate you properly, yet the disclosure itself can trigger assumptions that leave you less well accommodated than if you had said nothing at all.

And that is exactly how disabled people learn to hesitate before disclosing in the first place.

Because there comes a point in an exchange like this when you cease to be a paying customer, or indeed a person with preferences, judgement and a fairly intimate knowledge of your own body.

You become “the disabled guest”.

And then, somehow, unless you are extremely lucky, you mainly become a statistic; a tick on a procedural box and no longer a person with variable needs.

I’ve been quiet lately, trying to keep quite busy with other things rather than disappearing into writing hyperfocus but really trying to distract myself from the wall of pain by engaging with life more. Because, to my dismay, the all-consuming pain of living with Ehlers Danlos crossed with fibromyalgia, MCAS etc. is back with a vengeance again this late summer and, to be honest, it never really went anywhere and never does. While a flare is a 9/10 event, there is always some version of it going on and my days are never neutral; I now ask myself if they ever were because I don’t remember it if so.

Rather, pain just ebbs and flows with the seasons and, as usual, I spent spring and summer, at least those times when I had a bit more energy and upright capacity, trying to solve it “in advance”, planning ahead for when a cooler, wetter season would inevitably dial up the number of flares. I’ve spent all year experimenting with getting a bit more mobile, less fearful of movement and of its consequences, reclaiming some of my physical life back where I can, like the daily walks that do so much to regulate me and keep me more positive. But here I am again, back in the thick of weeks of awful widespread pain since early July and it’s not even autumn yet; so I’m dumbfounded by why it’s rebounded so intensely at this time of year. Right now, I wake up to a barrage of it, it’s there in every movement and it’s keeping me awake for hours at night, more nights than not.

Here’s the awful thing that many of you living with chronic pain will be familiar with: pain is so isolating because you become genuinely scared that if you talk about it, you’ll end up with no one left to give a damn. In my case, I get so worried that mentioning it “too much” will lose me my couple of remaining friends, the patience of my family, even my audience here if I keep on going on about it, because nobody really wants to hear about it, do they?

Few things seem to make other people more uncomfortable than someone prepared to air their pain in public. It makes them awkward and it stokes all their own fears about it. It forces them to accept that not all pain is fixable, switch-off-able, a temporary state and that’s not something most people feel comfortable being around; they do better around acute, fixable or fightable ailments, not slow-burn, everlasting, ever worsening states that never seem to get any better.

After decades of chronic pain, don’t I know that one, having seen friendships dwindle, visits become the rarity, conversations get avoidant, like the thing that takes up most of my survival effort has now become the uncomfortable elephant in every room.

I’m so aware it makes me sound like a whiner when I talk about it again, like I am an attention seeker, someone trying to hijack the conversation. Sometimes I can even sense that people are assuming it must be my fault, at some level, to still be in this much pain, like I must have an extremely low threshold or as though I succumbed to something ordinary that they readily cope with, like I am a weakling, or that I am a hypochondriac who thought about negative things too much, bringing it on myself.

Reality is I think I must have an extremely high threshold to put up with what I do.

Because the truth is I live with untenable amounts of pain every single day and I’ve tried to fix it every way I know how: through decades of mind-body approaches, through all the alternative methods I could possibly throw at it, through supplements and movement and physical supports and all the small daily negotiations involved in keeping a difficult body going. I’ve done so many of these things countless times over, most of them daily, yet here I still am.

My close family are the only ones who really know what I am going through, though it’s still quite impossible for even them to know what it’s really like from the inside, as they freely admit. And when I see that ashen look on my husband’s face because he’s worrying about me again, it sometimes feels like a far better idea not to keep going on about my pain, to hold some of it back, to leave it unsaid. With my daughter, it just gives her something else to worry about miles from home; and so I bite it back constantly, letting them draw their own conclusions as to whether my quiet mood is because I’m in agonies today or just because I want to be left alone.

Over time, that becomes a habitual state of personal lock-down, like you have barricaded yourself in a separate emotional room tucked away even from those you spend most time with; there together…but not really…and, all the time, that wall of loving protection is held as a sort of bracing manoeuvre against reality, an emotional aloofness established, quite ironically, out of love, not an actual desire for withdrawal, and yet it presents the same way. It can seem to these loved ones as though you are disengaging from them, moody, disinterested, self-absorbed, but really you are just trying so very hard not to ever let the reality of your pain spew out from behind the barrage in case they realise how much you are really struggling inside, which would likely horrify them and turn your entire home life into a bleak territory full of worry and fear. And let’s be honest, I also worry deep down that my husband might stop loving me, that one day he will declare that he’s had enough.

So I try and keep it to myself as far as is practical and, meanwhile, I’m laden with unspoken guilt at how much of a burden I already am, how negatively my health impacts their lives and how miserable it must be to put up with my endless stream of health issues and my withdrawn moodiness, one pain flare episode after another.

Through it all, I keep on trying to get better, to overcome pain, to get to a better place. These dust-myself-off, try-again self-recovery missions have been doing the rounds so long now, but I’m starting to notice something new sneaking in. How I’m getting despondent, am starting to feel like perhaps there is no real recourse to relief for me after all, and that frightens me more than almost anything that came before it, because it smacks of hopelessness. And if there’s one thing I’ve worked hardest at keeping alive all these years it’s hope. The belief that one day I would come across something that made the difference, the needle would shift and I’d get somewhere more comfortable, somewhere I could live better without pain always being the loudest noise.

I keep on keeping on with those hope missions but I’m beginning to notice how my enthusiasm is waning; how my mood is lack-lustre and cynicism is taking root. I’m beginning to get dizzy with the endless repeats of effort and hope, and the lack of energy I now feel around it all feels more like the beginnings of burnout and disillusionment than just my typical fatigue. Perhaps it’s why I feel the need to write this post: because I feel as though I have been around the block so many times and need to take pause, to get some perspective on what’s helping, what isn’t and how much toll it is all taking on my nervous system, my family and life itself.

For years, I think part of how I survived pain was by treating it as an unfinished problem and a big part of my personality gets a kick out of problem-solving, so I could invest myself in that, to a point. However bad today was, there were always still things I hadn’t tried yet, yet another avenue to explore, another piece of information I hadn’t come across, something I hadn’t understood or put together.

Increasingly I’m having to confront what it means when that list gets shorter or even starts to run out; and now I’m so weary with it all too. Twenty years this month since I medically retired; a full-time researcher into fixing my own health ever since, and this is where I’ve got to…nowhere much, except that I know just how much resilience I show in the face of so much relentless pain and frustration. I just don’t have the stamina to give to managing the complexities of chronic health that I used to give to it; I am running out of capacity to keep on picking myself up again and again.

Instead, I find I’m in even more pain as I age and that terrifies me because I have no control over that ageing process whatsoever. What everyone else gets to experience, I get to experience too, compounded on top of years of deconditioning, pain thresholds already maxed out and far higher likelihood of so many factors that other people get to consider as just vaguely possible, rather than very probable, outcomes as they are for me.

I don’t even have recourse to pain-relieving medications because my system won’t tolerate them, and maybe that’s a good thing, or I’d rattle with them by now. Whether it’s because of Ehlers Danlos, dysautonomia or mast-cell weirdness, my nervous system reacting in the face of outside interference, or simply all of the combined peculiarities of my particular body producing paradoxical reactions rather than the standard ones, meds of all kinds have never been straightforward for me. Nothing behaves typically, and things that are supposed to help can build up and backfire.

Almost the sole exception has been low dose naltrexone, which I slowly titrated up over the course of a year and have now been taking at the usual target dose of 4.5mg since May, that’s a total of fifteen months’ dosage now, hoping for some miracle like some of the anecdotes I’ve heard about from the LDN Trust. While it seems to have helped some things measurable on blood tests, pain hasn’t altered one bit, despite all those reports of improvement in fibromyalgia and central sensitisation that gave me reason to hope it might. Pain relief was the main reason I decided to try it, but it seems not to be happening in my case, at least not so far.

And of course I’ve tried all the other things for years: various anti-inflammatory supplements, PEA, CBD and more. None has made much of a dent in my pain levels, though I still find CBD useful for nervous system settling. I even took the giant leap this year and tried medical cannabis under the supervision of the same doctor who wrote about how instrumental this can be for chronic pain management in the CBD Bible but it made my dysautonomia so much worse and I didn’t like the feeling of it so I gave it up within two months.

Most of all, apart from the fact I didn’t feel like it was doing anything for my pain levels (perhaps I was caring slightly less about pain for very short intervals, which isn’t the same as pain reduction), I didn’t like the way that it felt like it was disengaging me from everything else at the same time, like I was half asleep and moving through some state of unreality, even in the daytime at a low dose. I stopped feeling real in my own body and that cost me the very improvements in proprioception and groundedness I’ve been working so hard to build back up to help with my disabilities. Against months of work I’ve been doing with body awareness and adding in proprioception aids, it felt completely self-defeating to voluntarily lose touch with my body, so I gave it up. The final straw was waking feeling so dizzy and out of it, hours after my last dose, that I could barely get out of bed at the start of a demanding day, and this was when I was only in the foothills of titrating cannabis oil drop by tiny drop, so I couldn’t conceive how I would ever get to the point where I was vaping away my pain, which was my only objective for taking it. It just didn’t feel right in my body, and perhaps that was a clash with my autism, but the pay-off felt just too high.

The end of the experiment, in early July, took away from me not only the sense of having some sort of pain relief plan in place ready for the worsening months of winter ahead, but all the considerable hope I’d invested in it. Hope that, this time around and well into the future, I’d start to be in a much better place and get my life back from pain, an idea I had finally let out of the bag, looking something like genuine optimism for the future.

It’s been far more of a wrench to let that idea go than I at first admitted to myself because, after all, I had had no glimmers of help with my pain for the whole twenty years of chronic issues before this and at least another twenty years of significant pain issues before that. I have gone it alone for so long, and here was something that might have genuinely helped me but, as ever, it turned out not to be a good fit in my case, which is so typical of many of the things that I try. What works well for others frequently doesn’t work out for me, and there’s a whole other kind of abandonment that stems from that, like you are always the exception left standing out in the cold with your face pressed to the window, looking in at everyone else sat around the glowing fireside.

Then of course I’ve kept on trying with all the various “mechanical” ways of averting or minimising pain; things like orthotics, tape, compression, TENS, and yes, they help, but only so far and in ways that can be a double-edged sword.

Last year I invested in this side of things a lot. I got fitted for a customised orthotic body suit sold to me as something that could start to make my body feel normal as I moved around because of the way it might help take the strain off some of my lax muscles. Instead, having spent a thousand pounds on this and having had it trimmed back to half its original size because I couldn’t bear its compression around my middle, this abhorrent piece of nylon got discarded as a complete waste of money because I couldn’t bear to have it on me for more than a few minutes at a time without more pain, especially on warm days. After I gave it one last attempt over a cooler spell, using it for gradually longer spells and more or less pushing through discomfort, hoping to acclimatise, I began experiencing a severe flare-up of intercostal rib pain where it was compressing me and, once I made the connection, gave it up as a dead loss. It had been a swallow-hard moment to invest in this expensive piece of rescue kit, and the fact it didn’t pay off at all still makes me sick to my stomach.

I also invested over £600 I couldn’t really afford, plus the cost of an assessment, in three pairs of different shoe orthotics and, though those were a game-changer in terms of not only reducing foot but knee and pelvis pain, they recently seemed to be letting me down already, barely a year after I got them; the arches no longer supportive enough. Given this current flare-up, and in case they had any part in it, I decided to get assessed somewhere else and have just taken delivery of a new, more technical (even more expensive) pair, but at least this time they are meant to last for more like 4-5 years. The jury is still out whether they are about to make a difference and, for the moment, they are only adding new pain as I get used to them, but fingers crossed as I have a lot riding on them.

My physio last year also introduced me to kinesiology tape, and I’ve amassed an entire cupboard’s worth of other stretchy supports (my latest is a Body Braid, as yet too early days to report back), but even these have their own limits. My skin now frequently flares up into a hot burning rash when I use the kinesio tape, including the supposedly hypoallergenic kinds. With allodynia and neuropathic pain, there are days when I literally can’t stand to have flesh squeezed or held by velcro-type supports either; my tolerance varying considerably from day to day. On those worst of days, every stitch of clothing can hurt, and every fabric composition matters; and those stretchy things are made of some of the most abhorrent stuff imaginable. Sometimes, it’s fair to say I look mummified in all my various straps and elastic tubes, and they can be as deeply uncomfortable to wear as they are useful for support, especially inside stuffy, hot environments or when the weather is warmer; so I effectively trade stability for comfort, and then pain levels shoot sky-high.

In other words, there are so many competing requirements in my body that even “helpful” things can turn on me. Support something mechanically and my skin or nerves object. Rest enough to settle one thing and something else becomes stiff and angry. Change my sleeping position to get away from painful ribs and my neck or breathing can become the thing keeping me awake instead. Add compression for stability and sometimes my autonomic system, neuropathy, MCAS or allodynia wants it immediately off again. Cool air can calm one part of me, portable fans being one of my most essential pieces of survival equipment, while significantly irritating another (for instance, triggering off an MCAS flare or igniting excruciating trigeminal pain around my jaw and face as has happened this week).

So pain management isn’t a neat list of things that work and things that don’t. It’s more like continuously negotiating between body systems that apparently didn’t attend the same meeting.

Then there’s all the low-hanging fruit: warm baths, cool showers, hot water bottles, ice packs, TENS machine, daily movement practice, weekly physio. I do it all, until I can’t bear to any more, with “getting it just right” being a full-time job (Goldilocks has nothing on my system). Sometimes the hot bath makes MCAS flare or dysautonomia much worse. Sometimes TENS feels like I am being flicked with elastic bands, even on the lowest setting, and I have to tear the unit off. More weeks than I like to, I’m forced to cancel physio because I’m just too sensitised or fatigued from lack of sleep to go ahead with it. With so many competing needs, and pain sensitised to hell and capable of backfiring to the very things that should be helpful, it can feel like serving some highly fickle master making endless demands on you only to throw everything you earnestly offer back in your face. There is no eventual mastery of such a situation, just a wing and a prayer…and the hope that something is finally on your side today.

Distraction is also a genuine pain-relief modality for me, not least because I am ADHD. It used to be painting for hours, immersed in the hyperfocus of it, simply forgetting about pain while I was in the process. Now, the very sitting postures of that hurt so much and pain persists through my focus all the time, interrupting the flow and creating the massive pay-off of considerably worse pain for days afterwards, so I’ve had to look for other distractions. Sitting reading a book quietly won’t do it so I’ve tended towards trips out, new places, visual stimulation and novelty but the reality is, for every outing that successfully distracts me from pain, there is still that disproportionate pay-back period of days, maybe weeks, of amped pain levels unless I am extraordinarily careful and measured in what I do. What we call a trip out would be a short totter out by most people’s standards and it hits very hard when I compare it with what we would both be preferring to do with my husband’s retirement years.

I’ve even started sketching on my outings, grabbing a few moments with a pencil and some portable watercolours, but my sitting posture on benches, and even exposure to weather conditions that nobody else has to think about, can have its pain pay-off so its never a given that I can do this distractionary thing, much as I love it.

Then don’t even get me started on all the mindfulness approaches. Suffice to say, I have dedicated years to those and have really and truly persisted with them, still using them on a regular basis but they only ever get me so far. They help me to cope a bit better with the relentless need to cope with, and manage, pain (if you get what I mean) rather than directly coping better with the pain itself, if I am being completely honest, and the emphasis that pain is all about the mind can get a bit much when you are dealing with mechanical failures. I am better with mindfulness techniques than without them, but they are no cure-all, by any means.

In other words, it’s a full-time and often thankless job managing chronic pain, and all that effort I describe only ever gets me so far. Never to what anyone else would consider a truly comfortable place, only less bad than otherwise. In fact, without a hint of vindictiveness, I sometimes find myself vehemently wishing other people could spend a day, even a minute, in my shoes just so I could explain without words what this is like because what seems on the outside doesn’t even nearly convey what is going on internally and how intense and relentless it can be. It can feel as though my body is literally on fire and yet I am just sitting there impassive and apparently unbothered; a form of stoicisim that has become an adaptive coping mechanism over the years (because to rant and rave really doesn’t help matters), yet to most people this doesn’t add up. I’m well aware this is just another form of masking, and it gives me no pleasure at all to consider how often I am forced to do this, for my own and everyone else’s comfort.

Then to wake up and the very first thing to hit you on a bright new day is a barrage of pain wherever it happens to be in the body right now is an extraordinarily demoralising thing. Before you’ve even had your first thought about the day or considered what you might want to make or see or do with it, the body has already submitted its list of gripes and made most of what you might have had in mind seem highly impractical.

So you come to the surface and, in seconds, without even scanning for it, you just know it’s already there. Maybe in some hot spot, like my flared-up ribs these past few weeks or the ever-present stomach discomfort, various joint pains, another headache, or more generalised burning sensations that are widespread, neurological and pervasive. Maybe it’s all of these and more rolled up together that gets me to that peak of awfulness before I’ve even cleaned my teeth; a complex hierarchy of attention my body is already demanding from me until it simply becomes white noise that I try to blank out in order to have a day.

And in the mindfulness circles, they always tell you to stop what you’re doing and conduct that body scan, don’t they? Pay closer attention. Sit with the pain. Breathe through it. Believe me, I still try that quite often when I’m desperate for relief, but I swear it’s not the kind of relief for me that it apparently “should” be and certainly not something I feel I could face multiple times a day.

So, what if my problem isn’t that I haven’t listened to my body? What if I’ve been required to listen to it all day and night long, for decades? Then, what sort of horror show would it be to stop and fully inventory it every five minutes? Not struggling to isolate one particular irritation but brought to a standstill by the realisation that every quarter of the body, every square inch of me, seems to be shouting at the top of its lungs like a hoard of angry people.

And right there are some of those words I most often find coming up when I scan the body: anger, fury, frustration. Not causing the pain, I don’t really believe that, but because of it…the unexpressed incandescence with the way pain exists so relentlessly regardless of what I do, how hard I work at it, even surrender to it, sit with it, listen to it, write it all down and yet it still doesn’t want to shift, dial down, become any more bearable after decades of work. No matter how much I journal my unexpressed thoughts or move my body instinctively or allow sensation just to be, breathing through its intensity, sometimes it simply shouts me down all the louder.

Why? I simply don’t know the answer to that and I’m becoming increasingly resistant to the idea that I should have one, that I’m failing if I don’t. I’ve even tried not knowing and letting that be OK, and yet nothing has shifted or relented. Pain just “is” in my system, that part I know for sure, so perhaps the only option left is to learn to live with it better.

On that note, born out of that same stash of tenacity as ever, the refusal to stop trying to get somewhere better, I’m now signed up for yet another lengthy mind-body programme starting next month. I’m genuinely positive about the course material and open to learning from it but, even then, part of me is wary because I’ve done this kind of group-based recovery work before and know exactly how it can feel when everyone else seems to be streaking ahead with progress while I’m left sitting there thinking nothing has changed: disappointed, a little wounded emotionally, left behind or out of the progress party.

Sometimes these approaches can feel as though they minimise what I’m experiencing or make it all about me not trying hard enough to fix it, as though pain’s persistence itself proves I’m still in denial or afraid or insufficiently regulated or simply not getting the process right. I’ve also been in groups where what people admit or gloss over can start to feel performative, as though there is pressure to give the “right” answer for the person leading the group, to sound more regulated, more accepting, less fearful, diligently trusting the process rather than admit that today you still hurt like hell and nothing much has changed. If I am still feeling shitty and like nothing is working, like I am still an unholy mess of pain, I can’t make all that neat just for the sake of everyone else. If it starts to feel insincere like that, I know I will get demand avoidant and simply want “out”.

Chronic health doesn’t work in some smooth upwards trajectory: it ebbs and flows and loves to surprise you, to confound and challenge you. So I’m inherently suspicious of any process that tells me I will somehow be cured at the end of it, but completely open to the possibility that it might help me reach a more manageable place because that’s what I’ve been after for the longest time on my own…and I am always open to learning from others.

The group side makes me wary for another reason. Being able to get real about pain with people who actually know what I’m talking about will probably be a blessed relief, but I know from years around health forums how quickly shared pain can create an intense sense of closeness. Because genuine friendship has been such a gaping hole in my life, I’m particularly vulnerable to latching onto that feeling and hoping it will become something deeper than it does.

I’ve made so-called friends in forums before only to have them disappear when their circumstances changed, or to find myself in very one-sided relationships where I was expected to absorb somebody else’s distress without them ever becoming particularly curious about who I was beyond the health problem we had in common. Add in the fact that I struggle to read the room accurately, not helped by Zoom, and I know subtle comparisons, social games, misunderstandings and rejection sensitivities could easily get in the way of the very material I’m there to benefit from. Which is a big consideration given how I sometimes wonder whether rejection sensitivity sits behind some of my most pernicious pain, like the wound that never gets to heal. Whether an entire lifetime spent feeling misunderstood and so often left to fend for myself has something to do with it.

Because the real thing I fear most is that getting real about pain, instead of glossing over it as usual, whether in a weekly conversation with a friend or here in the place where I write publicly, could lead directly to the thing I’m already frightened of: an entirely new level of abandonment. The ultimate aloneness and silence. The awkward aftermath of having said the wrong thing out loud and then watching tumbleweed roll silently across the empty landscape where I had hoped to be received.

The experience of constant pain leaves me feeling so very lonely already, and then the fear that talking about pain will make me lonelier still teaches me to hide the very thing I’m lonely inside; oh irony. The risk feels immense.

Because nothing is potentially more isolating than pain. Nobody can feel your particular version of it. Nobody can take it on for you or take it away. Nobody can fully understand quite how lost and frightened you can become inside it. How you can already feel so abandoned by life itself when something that hurts you does so relentlessly and for no apparent reason, unprovoked. This leaves you very little bandwidth for further rejection.

I’m saying all this because I’m a natural pattern seeker, and I see all the patterns in my life so clearly now, whether or not I have a solution for them. How being more open with family members and friends about what I’m dealing with in my health can seem to be followed by more distance, less contact, less inclusion, conversations that quietly move elsewhere and leave me out in the cold. Not necessarily anything I could ever point to or prove, just enough of a shift in their behaviour for my pain-body to notice it and start filling in all the blanks.

Because to explain isn’t the same as to be understood, or believed, or not judged unfairly, especially where disability is invisible, and so much of what it costs those of us with it simply can’t be seen from the outside. Many times, the detailed explanation I had hoped would gain me far more understanding has, conversely, gained me even less than I had to start with; cruel irony. My natural propensity to want to explain things thoroughly, to be well understood, for my meaning to convey cleanly and so on comes into direct conflict with the trend that other people tend to almost wantonly misinterpret my intentions or attribute an agenda to my actions (like I am making up excuses, courting attention or sympathy, trying to get out of things, etc.) that I never actually had. I just want to be seen and accepted just as I am, and my autism does very badly with these misinterpretations of my meaning. It stews on them and picks over them, finding so much hurt in them.

And in the year following my autism diagnosis, during which I have worked so hard to cut out the kind of unnecessary small talk I find so alien and get more real and direct with people, its been incredibly hard to notice how that directness, for instance when asked how I am, has led to people backing off, ceasing to ask any more, taking weeks to reply in the hope that the topic can be dropped next time we speak. There is no doubt in my mind any more that “how are you?” is almost always rhetorical; no one really wants to hear the fuller answer, not even some of the closest people, and that breaks my heart a little because to take pain out of this picture, where it effectively dominates my whole existence, is to basically lie about how I am in order to make them feel more comfortable. That’s not them wanting to know me but to know what is convenient, leaving me lonelier still.

So I am choosing to share the patterns of my pain right here, where I can get them clear and honest, into words that are easier to say because they are written not spoken, and where others may accidentally happen upon them and get to notice their own patterns in mine; to find comfort in the very fact of them being said out loud and not masked away to oblivion. Not because I have any easy solutions to chronic pain but because the crying need for honesty is the loudest impulse in me right now. Without being able to get honest about where I am in this moment, I have been left stranded without the ability to write all these weeks because anything else I could have shared felt inauthentic, so I decided to stay mute. And writing here is sometimes, in fact very often, my only outlet; my one place of truly authentic connection in the world, and I honestly need it right now. I need to be able to let this all out somewhere.

Until now, I have always known how to write about difficult things once I’ve found the pattern in them. Once I’ve understood something, extracted a lesson, found an interesting angle or a beautiful way of turning it over until the light catches differently.

What I’m much less good at is coming to the page when I’ve got nothing nice to say about what is happening and no useful conclusion to offer. Not because I don’t want to but because I fear the outcome; often hesitating, then deleting before even publishing in case it lands badly or loses me readers. This feels like another area of my life just begging to be addressed in the light of freeing myself from all the many layers of pretence I used to maintain in order to keep me “safe”, as I saw it. It never truly did that and only ever kept me more isolated and trapped in my own circumstances; muted by the pervasive feeling of insecurity that tends to hound us all our lives when we are wired differently to the majority of people. We become so guarded around what is supposedly right or not right to do or say that we have no outlet to truth at the times we most need to say how it really is, and all that muteness bottles the pain up inside, feeding the emotional pressure and isolation already wrapped around the physical pain.

Meanwhile, waiting for the resolution before I speak is its own kind of distortion, keeping me from connecting with people wired much more like me, who live in the unresolved state and need to know that they are not alone in it.

If I only write about pain once I’ve made something constructive out of it, then I’m quietly helping perpetuate the idea that suffering should arrive already processed for other people’s consumption. That I should only speak once I understand. Describe once I can resolve. Bring experience to the page once I know what it means. Leave the reader with something hopeful, useful, actionable or at least beautifully tied together, pristine and polite or not speak at all. That sounds exactly like what so many other people seem to unfairly expect of me, which is a good enough excuse to drop it.

The risk of not sharing unless it is made pristine is that so much gets lost or left unsaid, and those of us in it get left struggling all alone.

What happens to all the long phases in life when nothing is solved, the treatment doesn’t work, the programme hasn’t transformed you yet, the body remains difficult, the fear remains frightening and you simply don’t know what happens next? What if there is nothing useful to share at any point in that “try this, fix this” kind of way; and what if the belief that my writing should be so pristine is keeping me from sharing truth that can make a difference. The kind of truth that deserves to be said out loud and which other people may sigh with relief to hear another person saying, so that they, in turn, don’t feel quite so alone in it.

And even having written all this, I’m sitting here hesitating over whether to publish it in the seconds before I press that submission button. In the old days, a post like this would likely have ended up deleted: partly because writing it felt as though it tainted my own mood and made my misery feel more concrete somehow, partly because admitting this much pain felt too much like succumbing to it all or even inviting it to stay, but mostly because of the profound fear that people wouldn’t like me for saying it. That I would become unpopular, lose readers, be quietly stepped over or ignored because nobody wanted this much truth from me.

But avoiding all those uncomfortable feelings never really made them go away. If anything, it left them stuck inside me, unexpressed and still carrying their charge, which is exactly the sort of thing I’ve spent years trying to understand through the mind-body work I do believe in.

Which, I realise, is almost painfully the point of everything I have just written.

If I have a hope in publishing this, it is that those of us who recognise any of what I have conveyed here can become a little better at staying present with one another when there is nothing useful to suggest; indeed, when no solution is actually being asked for, just kindness and recognition, someone to bear witness to your pain. That if we can’t fix it, we can at least become more honest about the pain itself and about the fear and loneliness that accumulate around it. Perhaps we can get beyond the social faux pas of saying the uncomfortable thing and into something more authentic whilst also showing our nervous systems that we can actually survive such radical honesty, that nothing implodes, the world doesn’t stop spinning because we say it out loud, and we might even feel a little bit better for giving it a voice.

I’ve had a whole lifetime of caving into a state of exhausted surrender around the end of July which, back in the day, I associated with the school year ending: exam stress being over, yes, but also all those many months of masking and putting on a performance finally coming to an end. It had more of the quality of a slump than relaxation at the start, but the weeks that followed would invariably be the best, the least unnatural, of my year because I was fully at liberty to be myself, following my own urges, well away from the kinds of scenarios that had required performance and survival tactics for most of the year to date.

I would sink into the amorphous routines of summer and a whole pile of books, as though the unstructured summer days themselves had turned into a giant feather duvet made for a soft landing, only emerging around the time the school uniform shopping excursions began to twist the knife in my belly again. And so the annual cycle rolled around, year after year.

When I look back at all the times I have struggled most in my various “career” (word used very loosely) iterations, my health at its most precarious and myself on the doorstep of crashing hardest, it has so often been during the later part of summer. As though I had been forced to push beyond some invisible August curfew, my body saying no while the demands of life insisted I keep making it show up as though the season didn’t matter. Now, in her second summer of working since graduation, following years in academia with a decent summer break, my daughter seems to be following much the same pattern and it strikes me as no coincidence.

Back in the day, the factory shutdowns, the great summer exodus, even the pause after harvesting used to reflect this natural circannual cycle. Now, we are all expected to march on through it regardless; however, my nervous system has never truly played along.

Ever since those long school holidays, more or less the same pattern has replicated itself in my life and my health patterns. These days, I’m starting to notice it less as something necessarily “going wrong” with my health and more as an accommodation need asserting itself with increasing firmness.

So, although I am in quite an intense fibro-flu episode at the moment, and even noticing post-exertional malaise trying to assert itself again whenever I slightly overdo things, by which I mean do pretty much anything at all, I’m regarding it less as a fresh health crisis and more as a reminder to listen to myself, take it slowly and live to my actual limitations. Not meant in some bleak or negative way, as though having limits were a terrible thing, but as a powerful realisation of finiteness which most of us would probably do far better to accept, because we all have our limits (whatever some people believe). The problem is not necessarily having them; it is repeatedly organising our lives as though we don’t.

So, less trauma echo than genuine need, I now regard this particular season of pulling back, slowing down, going soft, dropping demands, being myself and taking my foot off the accelerator as an intrinsic part of who I am: a neurodivergent person with chronic health challenges who often gives her all to a more outgoing version of herself in spring and early summer, then receives the bill as late summer arrives. Which is just fine, if I accept in advance that I must inevitably pay the bill. The problem arises when I try to pretend there is no bill or that I can pay it whilst still pushing on with a busy life; without first catching up.

There is also something about the languorous, arid, sleep-inducing weather of high summer that pushes me over the edge into daydreaming, drifting effortlessly in and out of a hypnagogic state almost every time I shut my eyes. It’s only ever alarming if I make it wrong or notice it when I am trying to run around under the kind of pressure my system really doesn’t need to be under right now. The rest of the time, it can feel quite relaxing, like my brain is actively sorting through the year-to-date of experiences and putting its affairs in order. Time spent with a journal or letting my thoughts just flow is far more valuable at such times than ticking items off a task list.

I sometimes wonder whether this apparent idleness, sometimes labelled burnout (and how different those words sound, as though one is outside of my control therefore less “my fault”) isn't idleness at all. Whether my brain is actually doing one of its most important jobs of the year: sorting, integrating, joining dots I didn't know existed, quietly deciding what is worth carrying forward and what can finally be laid to rest. For most of my life I interpreted this dreamy, drifting state as cognitive failure, something to snap out of whenever the outside world kept demanding more. Only more recently has it occurred to me that perhaps this is cognitive work of a different kind. Not the focused, executive-function sort that produces obvious results, but the quieter sort that reshapes understanding almost invisibly while I appear to be doing very little at all. It only becomes a problem when I insist on making it wrong.

Yet, as a child, I don’t think I was ever made to feel that the way I was spending my summers was wrong. My parents just seemed to understand that, once school was over, I really needed those long stretches of unstructured time. They didn't feel the need to timetable my holidays or insist every day looked productive from the outside. They simply trusted me to disappear into books, gardens, solitary projects or whatever happened to capture my imagination, and I trusted myself because they trusted me. The same way they trusted me to pace my own schoolwork and, because it was not done under duress, I delivered. They gave me the freedom to find my own rhythms and the rhythms I found, which included radical periods of unstructured time and system resetting, kept me healthy and sane. Looking back, I realise those endless, apparently shapeless weeks weren't empty at all. They were where so much of my creativity, curiosity and sense of self quietly grew.

Then adulthood arrived, and the pauses simply disappeared. There was no longer any expectation that the year itself contained natural periods of retreat, consolidation or reset. Instead, I gradually learnt to distrust the very rhythms that had carried me so comfortably through childhood.

Perhaps it’s also something deeply influenced by my autistic need for quietness, solitude and gentle creative routines, which sometimes takes a back seat to my more ADHD urges. In this one season, these qualities reign supreme, demanding more actual rest and comfort, fewer outward-facing demands, less friction and far less of the kind of stimulation that inevitably tags along when ADHD is having its playtime.

So much of the rest of the year can feel like pushing through things that don’t always come naturally to all the contrary parts of me, in order to achieve my more outwardly focused ambitions, mostly driven by my also dominant ADHD requirement for variety and novelty. I can stretch myself more than an inch earlier in the year and still get away with it. In August, things feel quite different and there seems to be no negotiating with my nervous system any more. I simply can’t push through, and I think I first began recognising this many moons ago, way back in my late twenties, telling myself I should never have left academia because at least it would have assured me the summers off.

Even as far back as 2004, the year I was forced to take the completely abhorrent corporate job that ultimately pushed me over the burnout cliff, I had the foresight to choose a September start date when they would have preferred me to take up my role much sooner, and even though I badly needed the money. Something in me, and it wasn’t only the wish to avoid childcare costs over summer, knew I could not even begin to contemplate turning up at some concrete brick of a building and facing a nine-to-five, after twelve years of being self-employed at home, until August was put behind me. Some instinct told me that my executive function would become fractionally more available once summer was over, compared to all the listless weeks that came right before this. Call it a subtle change in the light quota or a Pavlovian response to other sensory cues reminding me of the school term starting up, but something would always act like a switch flipping in my brain, come September’s first week.

Because it is as though I can’t even, and I mean really can’t, when it comes to cognitive load during these lethargic high-summer days. Even writing this post feels like wading through cognitive treacle and something I need to push through quickly before my brain starts aching or loses its words. Confront me with the plot of a good novel or some box set to watch and, yes, I can manage that. But try to get my brain into gear for something more crucial, more relied-upon and it’s a complete non-starter at this time of year, yet for many years I forced it, then wondered why brain fog became so predominant.

More and more, I also notice how dysautonomia is part of it: how the particular combination of dryness and heat in August feels quite different from the heatwaves of June. Almost like I am asphyxiating if I try to move much in it. Heat intolerance is extremely active in my system, always has been, and reaches a particular head in this most intense of seasons, something I can trace back many decades. I find it especially hard to be upright, to gather stamina and maintain it, to manage afternoons without lengthy horizontal spells to correct blood flow that also meet the ever-present need for restorative naps and, above all, to do anything whatsoever involving sociability. Which is ironic, given that it is the month of so many barbecues and other gatherings.

For years and years, social invitations used to litter these late-summer weeks. So many were turned down, excuses made, my health suddenly not up to it, then all the misunderstandings that ensued, that I am now noticing the shift; that I’m apparently not invited to them any more, even though I know they are still happening. Rather than sadness, this comes as a huge relief because attending a social gathering right now would be….well, I just couldn’t manage it, full stop. Gathering together enough social energy to make even the vaguest attempt at small talk would take everything I had and leave me on the floor for days, far more so than the same attempt just a few weeks ago. At least I now recognise this and no longer pretend that I can do it, which has been one of the biggest changes since exactly a year ago, when I got my autism diagnosis (to notice the trends, and to act on them), and very much a change for the better.

And don’t get me started on holidays. Yet I still fall for it myself: this dominant cultural idea that late summer is the obvious time to go away and do all the things because everyone else is doing them.

For years, having to gather myself to go overseas on some highly routine-disrupting family trip, at the very peak time for crowds and sweltering temperatures, was always a messy business followed by a lengthy recovery. I finally recognised, quite a while ago, that it wasn’t really possible for me in August and began moving the more demanding trips much earlier, or later, in the year. Okay, so I pushed myself through a short city break last August, but I distinctly remember telling myself I had got the timing all wrong and wouldn’t be doing it again…

Call me a goldfish but I still made the knee-jerk error, months ago, of booking a four-night trip to the Welsh borders for the first week of August, ostensibly for our anniversary: a few days in a quiet cottage that was not remotely well thought out in terms of sleep or relaxation accommodations, with a shared bed and very rudimentary furniture (we’ve got used to sleeping apart for the past six months so to switch back, in a likely heatwave, in an alien bed, on top of travel demands, would be a complete nightmare).

So I have just made the very hard decision (because it’s both humiliating and money-wasting) to cancel it, barely a week before we were due to go, chastened by my own idiocy in ever thinking it was possible, sensible or even particularly desirable to go away during the worst possible month for travel away from home. This cancellation began as a response to the severe flare-up of fibromyalgia symptoms that I am currently dealing with, but once I allowed myself to notice how much dread I was actually feeling about packing up and going anywhere, I came to realise there was so much more to it than just my health. It simply wasn’t worth the risk of setting off another cycle of flare-ups that might interfere with far more important plans coming up in September, it's true; but I could also tell that a very big part of me quite simply didn’t want to go. Nothing more complicated than that: just sheer reluctance to be away from home, feigning enthusiasm for daily outings in high summer temperatures and trying to prepare nutritious food in some tiny kitchen. A huge part of me felt instantly liberated by the change of plans and the suddenly empty diary.

The earlier trips of this summer, which went remarkably well and which I have written about before, were well-strategised, meticulously mapped-out exercises in achieving some interest and variety in my otherwise quite home-oriented life by going to places we had genuinely wanted to visit for ages, despite the many ways travel can be so challenging for me. This August trip was something else entirely.

It was the result of a highly impulsive ADHD moment of being off-guard when an offer from a rental agency we had used before happened to land in my inbox on a day when I was dopamine hungry. Riding a wave of over-optimism and newly encouraged travel addiction, I booked it under the time pressure created by the offer. I am now faced with jumping through various hoops to obtain a note from my GP for an insurance policy which may, or may not, cover a flare-up of my chronic condition, in the hope of getting my money back. More realistically, I am already filing the possibility that I might not succeed under the heading “paying the ADHD tax”, and notching it up to experience.

What is particularly interesting is that, the moment I reclaimed the week from the holiday, my mind rushed to find other things to fill it with. Maybe I should book the long-overdue dentist appointment. Maybe I could agree to see some of the people who probably feel I have fallen off the edge of the planet lately. Maybe I should use the week “productively”.

But no, that really isn’t the point. The actual point is to reclaim the time from all that pressure to be or do anything in particular and return to the whole flavour of August which, according to my nervous system’s lifelong preference, is to relax back into being fully, unapologetically myself, with no strings attached.

In short, work, social demands and travel are all forms of severe friction in my world when they occur in August. Together, they mark the boundaries of several predictable, seasonal, possibly circadian, and certainly neurodivergence- and chronic-health-related limitations on what I can sensibly expect from myself at this time of year.

By finally admitting that August is something of a null month, I can begin to tread more gently around this reality, giving my system what it actually needs: not only a physical reset but a mental and emotional one during the final month of summer. Already, I can feel my nervous system uncoiling as though it has been in some sort of tangle; finally encouraged enough to let go of some of its hypervigilance, its safety rituals and the perpetual tension my body tends to hold onto when I am more active.

And perhaps this softer rhythm is also why I have felt myself being pulled back towards the mind-body approach, for instance learning to swap out some of the more alarming pain labels for far less loaded words, and picking up Curable again, after giving up on it years ago. Back then I don’t think I understood its format very well because I was looking for quick results, measurable progress and some reliable sign that I was doing it correctly, which is the exact opposite mindset to the one it actually requires as one of the most useful nervous system reset tools aimed at managing chronic conditions.

This time, I am more able to let the writing exercises take whatever time they take, pick up an audio session whenever it feels needed, then leave some space afterwards for the mud to settle around whatever has come up, as I have been doing today. In its own way, this kind of practice is productive too, just not in the narrow sense that Western society has come to mean by productivity, where something visible must be completed, achieved or crossed off a list. Sometimes the useful thing happening is much quieter than that: a nervous system softening, an old feeling finally being allowed to surface, or the mind gradually loosening its grip on a story that has kept the body braced for years.

So, yes, this whole August thing has been a very large illustration of the power and positivity that can come from admitting my limitations. In admitting them, I realise I don’t necessarily lose anything but, rather, gain something important: a life that actually fits my natural rhythms more accurately.

For years, all those attempts I made at pushing through this season were among the most predictable triggers for burnout and late-summer crashes, real physical low points (like the summer Long COVID finally took hold of me, after months of soldiering on) and significant symptom flares which seemed to have no proportional cause at the time. Yet there, in full view, was a recurring seasonal requirement which my brain kept trying to override and my body simply wasn’t having.

Another recent breakthrough has been admitting limitations that are not merely seasonal but “just are”, then owning them without the cringe or apology that used to accompany them. It boils down to finally standing by my actual strengths while also admitting where those strengths meet their natural boundaries.

That might make my abilities appear highly inconsistent or unreliable, my contributions fickle or arbitrary, yet the truth is something far more nuanced. It is more accurate to say that, by knowing what I can do versus what I can’t, I get to specialise in those areas (such as written advocacy) where my genuine strength lies, rather than repeatedly setting myself up to fail at, say, verbal interventions which constitute a genuine weak spot for me. In those situations, I am not only incapable of performing at my best; I can take an actual physical and emotional hit if I force myself to go against the grain, trying to take it on anyway, especially if I then believe myself to have failed, let someone down or attracted justified criticism or rejection.

In fact, the knock-on effects can be quite devastating and all because I didn’t realise, for years, that where one area was a gift, the associated tasks around it, leaning into different kinds of communication style, could constitute a kind of ability void that others, who expect total consistency across the board of attributes, would fail to understand or forgive in me. Far better to be completely honest about those discrepancies in the first place and offer my skills (or not) accordingly.

There is a world of difference between stretching myself and repeatedly requiring myself to function through my weakest channels. One can sometimes expand a life while the other merely drains it of resources.

This single area of confusion, regarding what I could and couldn’t take on, given my particular strengths and weaknesses, set me up for more failure, criticism and self-beratement than almost anything else I can think of in my earlier life, before I knew I was neurodivergent and had such an uneven distribution of abilities.

For instance, certain causes sometimes arise that I happen to take a real interest in or am prepared to fight passionately for. One has been the recent threat to our village from yet another sizeable housing development on a greenfield site.

When it first came up, threatening our new location with the same kind of unbridled planning madness, bereft of the appropriate infrastructure, that undermined and eventually ruined our previous village, I found it impossible to stay mute. This was despite the fact that taking part in forums or making myself visible on public-domain social media is something I generally avoid at all costs.

Once the first bureaucratic wheels began turning, and so few people seemed to have noticed or to know what practical steps to take once they did, I found myself utterly compelled to post in the village Facebook group, outlining actions people could take if they wanted to raise objections. I used what experience I had to isolate the relevant issues and bullet-point the relatively straightforward steps people could take to make their views heard. In other words, I did the part I’m good at: I researched, clarified, organised and put the information into the kind of words other people could use if they were struggling to find the right terminology to express their opinions effectively.

Though I was targeted by some of the toxic masculinity that enjoys attacking women wherever we deign to offer expertise or an opinion, I was largely able to cope with the inevitable backlash of sticking my head above the parapet (my phone going off at all hours, yurgh) so long as I was helping people take action instead of circling in confusion, as so many had been doing at the outset. In fact, quite a number of people contacted me privately for further advice or to thank me for identifying the issues and explaining what they could do as they had previously felt so helpless.

However, when it came to attending a meeting where a local council representative was due to defend the intended development, I simply knew I couldn’t attend in person. The cost to me was far too high versus the actual benefit of my being there, given the meeting was playing no actual part in the decision-making process.

I had already made my views known in writing via all the appropriate channels, and helped others to do likewise, which was my contribution. But now, with a very hard swallow, I had to tell some of the very people I had been speaking to, who were beginning to lean on me, that I would not be there at the meeting, along with a rough indication of why, without making up some total fiction as an excuse (which isn’t my style), and this felt incredibly vulnerable though necessary.

Quite apart from the accessibility problem of the seating in our village hall, which I find intolerably painful even for a very short period, there was the sheer length of the meeting, with multiple agenda items besides this one, and its lateness in the day. Every rare evening venture of my life has to be strategised weeks in advance and very well justified because of how hard it hits my nervous system and sleep patterns. The sheer adrenaline required to push through chronic fatigue and orthostatic problems later in the day, sitting upright, can crash me for days afterwards and has to be significantly worth the price for me to agree to it. So in spite of numerous people sending messages asking me to be there, or simply assuming I would be, I knew I couldn’t do it.

But I also knew I couldn’t be there on several other levels connected with my neurodivergence and my basic personality. No matter how important the subject was to me, I could not have spoken my views publicly in a room full of strangers. Nor could I have coped with the sheer volatility of all those emotions let loose in a small room. From a sensory point of view, all those voices competing to be heard, fluorescent strip lighting above, hard seating and a tense atmosphere would have had me in pieces.

Nor would I have been able to follow a fast-moving, emotionally charged verbal exchange well enough to intervene as clearly as I can in writing, which people would no doubt expect me to be able to do because that’s how my articulate, carefully worded, much corrected written prose comes across (as so confident). By the time I had processed one point and formulated what I wanted to say, the room would have moved through several more, and my brain would have been left far behind in brain fog and overwhelm, if not actual shutdown. Then I would have gone home replaying every moment, highly overstimulated and completely unable to sleep, having spent several days’ worth of energy for perhaps thirty seconds of highly imperfect contribution. The social demand alone, of all these people that now recognised my face from Facebook, would have had me wanting to lock myself in the loos.

So, for the first time since diagnosis, I had been put under this kind of expectation and had passed the test by, instead, setting a new boundary and saying a firm no, then standing behind my own decision without allowing myself to feel like a failure or a let-down. It was a milestone moment as a lifelong people pleaser.

Of the two people I had particularly connected with over our shared interest in the planning matter, one responded very kindly and said she didn’t blame me at all for not going, adding that, from the point of view of her own wobbly health, she could well relate to the need to protect my own wellbeing first. The other hasn’t replied to me since, not even a kind response about my shared disabilities, but that failing is entirely on her. I refuse to take it personally or experience it as a meaningful rejection, though the old me undoubtedly would have done (and stewed on it for days).

The point is that, when the meeting came up, I knew my limitations. I then stated them clearly and without apology, without oversharing the exact circumstances in such a way that would have left me vulnerable, and I lived by them, without guilting myself or making myself wrong, as though I had failed or let anybody down.

Frankly, I only wish I had managed to do this more often in the earlier years when I frequently dragged myself over hot coals to meet other people’s expectations of me. It would have saved me a great deal of stress and grief to have reached this point rather sooner, but better late than never, and I am mostly proud of myself for doing it this time. Declining the meeting did not cancel out what I had already contributed. This is another old piece of faulty logic I am discarding: the idea that unless I am prepared to do every part of something, what I can offer somehow doesn’t count.

Because it does count; all of it. Written contribution counts, research counts, helping other people find their own voices counts. Knowing when to hand the next stage to somebody better equipped for handling it also counts. So when the later request came to join a working group to continue adding pressure and stirring the pot face-to-face with political representatives and so on, I also politely declined.

And it’s incredible how much more relaxed I now feel, with no August holiday to go on and no further action I can take over the planning matter until it reaches the next stage of public consultation. At that point, you can be sure, I will do all the things according to the appropriate deadlines, but I won’t be joining any committees or standing up to speak.

Far better to do what I can do and pull back where I can’t than to become so overwhelmed by the imagined requirement to do everything that I do nothing at all. To live to my strengths and own up to my limits.

So for perhaps the first time since those original school holidays, when I used to dump my bag at the door and disappear into my own space, a pile of books, or whatever hyperfocus was at the top of my interests, and remain contentedly inside the unstructured bubble of my own making the whole summer long, I feel as though this season is finally being reclaimed as my own.

No apologies, no forcing, no twisting myself into a pretzel to match how other people choose to spend their late summer dashing around. I get to reclaim not only a slowing down of days, movement and demands, but a slowing of all the endless thoughts that usually teem through my ever-exhausted head. That is not merely a pleasant possibility to open myself up to for once because it suddenly feels highly necessary.

It's been one hell of a year for self-observation. Thousands upon thousands of tiny observations, trying to understand my own body a little better, noticing where I help it, where I unknowingly fight against it and where old assumptions quietly fall away. I don't regret any of that because I feel as though I understand myself rather better than I did this time last year. But observation, useful though it is, can eventually become another full-time occupation. There comes a point where enough has been learnt for now, the notebook can close for a while and the experiment becomes simply living again. I rather suspect August is asking me to do exactly that.

Perhaps knowing my limits was never supposed to be the sad little conclusion I once imagined it to be: an admission that life had defeated me or that my world must become smaller and smaller. Perhaps it is simply the point at which I stop pouring my finite energy into performing a version of life that was never shaped for me. I can use what I have where it matters, leave the rest alone and allow August to be August, reclaiming what feels like a far more natural rhythm in the cycle of the year.

So if it turns out I don’t write very much over the next few weeks, you’ll know how I am spending them: something like this.

For years, summer crashes really baffled me. I understood the obvious bits: heat exhausted me, humidity made me uncomfortable, poor sleep caught up with me and then, of course, I came to understand about hypermobility and dysautonomia. But the deeper pattern remained elusive because the crash rarely arrived at the height of the heat itself. More often, it arrived afterwards, as though my body had held everything together through sheer determination and then collapsed once the weather changed.

This week has felt like a reminder of an older kind of flare that I have not experienced so intensely lately, but then we have just been through an exceptional heatwave and that alone can be like the aftermath of any other major exertion.

The closest comparison is fibro-flu: aching all over, muscles rigid and sore; a highly excitable brain flashing migraine-type sparkles in my vision; strange intense thirst and tongue tingles; muscle tremors; a hollow, irritated stomach; high sensitivity to every kind of sensory onslaught and the feeling that every cell at every level of the body is somehow involved in the distress. It has been dismaying to recognise sensations that once defined my fibromyalgia years and that I had come to think I had, if not left behind, at least moved beyond somewhat as less constantly present.

Alongside all this was a deeper sense of systemic dryness, as though several days of heat had left the tissues themselves desiccated, irritated and more painful long after the temperature had fallen.

So, just at the point the weather became more manageable, the temperature more bearable again, I went into this crash quite deeply over the weekend and spent the next few days languishing in it, feeling bitterly sorry for myself after all my recent gains. Hungry for dopamine, all I wanted was to get out of the house, reclaim some routines, go for some walks, do something creative, but I was taken offline again, quite against my will. A much looked-forward-to visit from family we actually enjoy seeing on Sunday, already postponed more than once, had to be put on hold yet again and I was struck by the irony, given temperatures were technically now on my side, something I’d been keeping an eye on all week, crossing my fingers that it would work out on the day.

So, while the weather showed up in my favour, my body really didn’t and I had no choice but to wave the surrender flag.

In short, I felt like I had been through a wringer, and I also felt so cognitively fatigued for days, borderline back into primary brain fog (not just a bit mentally tired), which was interesting. I couldn’t have coped with any social conversation that day if I’d tried, and the presiding urge was to shut down and withdraw, like I would after some major source of sensory overstimulation.

Having tolerated the heatwave itself somewhat better than expected, the topic of my last post, this came as quite the blow. It got me into thinking through the mechanism of the aftermath: was it more or less the same as any other “push through” event, where I seemed to be coping at the time but then the body puts in its expenses once I am technically through it?

Reading other people’s experiences, it strikes me that heat intolerance in fibromyalgia is often discussed as though it were mostly a matter of conditions being too hot for tissues and nerve signalling to cope. For those of us with hypermobility and dysautonomia layered on top, not to mention all the sensory sensitivities of neurodivergence, I think something more complex may be happening.

Throughout the heatwave, my body was relying heavily on external regulation because its internal regulation was really struggling. While others sweated normally and somewhat adapted to the conditions, I barely sweated at all. At least, not until the final day of a row of five, when it was like my body finally got the memo and suddenly I was clammy-feeling all day, which can itself be exhausting in a system such as mine, my fingers constantly pruned and generally needing more showers, as though some threshold had finally been crossed.

At the same time, the usual strategies that help me function were becoming harder to tolerate. Heat increases laxity in my hypermobile body, yet the braces and supports that reduce the strain on my muscles become unbearable in the highest temperatures. On my very early morning walks, taken on Friday and Saturday, having reached the threshold when days of stagnation were now as abhorrent to my senses as attempting movement in heat, I was forced to abandon my body binder and relied only on my sacroiliac brace to hold my hips together, losing fifty per cent of my usual compression and feedback. I also had to remove the kinesiology neck tape that has been so helpful to me (again, see my last post for the logic behind this), because it was starting to really irritate my skin in the heat if I didn’t give myself regular time off from it.

It usually takes another layer of clothing underneath for me to bear the body binder, which feels texturally abhorrent and chafes, so without the possibility of wearing more clothing than a single lightweight outer layer hanging loose, I decided there was no way I could tolerate it on these days. With orthostatic intolerance under better control, thanks to sodium loading, I honestly felt in the moment that I could manage without it.

Even as I made the choice, I suspected deep down that I might still pay for it later in some abdominal pain and the familiar sense that my organs and pelvic floor were all in the wrong place after being upright for the duration of a walk, worsened by blood pooling, and I wasn’t wrong. However, yet again, the effects arrived much later, not at the time I was out on my walk: and I do notice that pain feedback is generally lower and often much delayed in hotter temperatures, almost like pain is temporarily absent in some of the very parts that usually shout the loudest. The delayed factor was compounded by the marked downshift of temperatures from mid to high thirties to upper twenties by Sunday morning, which is when I woke hurting all over like I had been kicked by a herd of buffalo.

So the temperature dropped multipe points to highish twenties, the breeze returned and my husband experienced it as pure delight: to finally get some air in the house, to throw open all the windows we had kept tightly shut with blinds pulled down for days and get some cooler currents back into the stuffy building. My body, however, as ever, seemed unable to adapt so quickly. The same breeze that briefly revived me, when I first came downstairs to such a different indoor climate from the previous days, also quickly triggered the kind of sensory overload I associate with vibration urticaria and sudden transitions. I was both relieved to feel some forceful airflow through our sliding doors again, enough to take me from the brink of constantly overheating, and cowering away from it in no time, eventually having to wrap a shawl around my neck, shoulders and torso, even put on socks for cold feet and later craving a hot water bottle on my back. This, despite temperatures that would have seemed impossibly warm only days earlier, since my system is generally only happy below about 22 degrees and considers anything above to be much too much under normal circumstances.

Given the contrast with the earlier part of the week, I was acting like it was a chilly spring day with an annoying draught and, meanwhile, the feeling of widespread flu-like pain persisted in every part of me and the fatigue part of it floored me.

Temperature dysregulation can be a very real part of the hypermobile experience and this paradox of requiring interventions that seem almost comical to the casual observer, or needing different temperature modifications for different parts of the body at the same time, brick cold feet coinciding with red hot face and so on, is something I’ve lived with for a long time, and since long before making the hEDS connection. When I was looking at things through the eyes of fibromyalgia and chronic fatigue alone, it really confounded me.

I also felt so thirsty all day but oddly unable to quench myself or take in the necessary volume due to the return of spontaneous muscle bracing, feeling at once parched and fluid-loaded all at the same time. The sheer volume of electrolytes I had been sinking over the previous days no longer felt possible, even if it had been so helpful until now, so I was forced to adapt downwards, which had its own knock-on effects. In fact, my ability, or desire, to eat was also badly compromised by gastric slowness and stomach discomfort caused by tightness, which was another factor in cancelling my weekend plans to see family over a meal out together. Ironically, my body seemed to be doing most of its bracing, not during the heatwave that triggered extreme laxity when you think it would have most needed it, but in the aftermath, rather delayed.

Now, instead of enjoying the cooler weather, making the most of fresher mornings to get out and move my body, I became invalided on the sofa again, forced to take far slower mornings, getting out of bed really late like it was a midwinter flare. I began clocking signs that post-exertional malaise was hovering there in the wings, registering the warning shots of returned heart palpitations and a kind of tremor that often runs through my muscles when they get into that post-exertional state. This made taking one wrong step with overdoing it far more risky than it might have been just a few days before and I knew I had to take it seriously, but it wasn’t what I wanted to hear in weather conditions that might otherwise have allowed me to get out of the house and feel less trapped by it all.

Looking back, I no longer think of these episodes as simple heat intolerance. They feel more like the delayed consequences of prolonged compensation. A body with dysautonomia, fibromyalgia and hypermobility spends days juggling heat regulation, circulation, blood pressure, sweating, mechanical stability and sensory processing. When the weather finally changes, there is no guarantee that all those systems will settle neatly back into place. Sometimes they seem to overshoot, to oscillate, to struggle to rediscover equilibrium.

The crash itself can feel like time travel. The symptoms arrive carrying the emotional weight of previous years, resurrecting old fears and old identities. In particular, I felt haunted by sensory cues transporting me back to the summer of ’25 when I first crashed into Long Covid, since the patterns of heat-related behaviour were much the same. Yet perhaps what is returning is not the illness itself, but the nervous system’s memory of how to adapt under certain conditions. Or, rather, the lack of clear recollection of how a “normal” body would adapt, drawing on inventions all of its own, collected over several summers of doing its very best with confounding conditions.

This only adds to the compounded effect of “summer is the worst time in my year for symptoms that feel completely out of my control”. Because at least with winter, the management of the kind of pain and limitation that colder conditions can bring to the fore is more of a logic game. Managing this season feels more like being thrown around on a deck in a storm, with long-range effects experienced downstream from less-than-ideal decisions taken in the moment, for instance that lack of bracing on a hot morning because it felt okay at the time.

For those living with these overlapping conditions, the real work of summer is often invisible. We regulate ourselves through open windows and timely closing of windows, braces and blankets, salt and electrolytes, movement and stillness, fans and hot water bottles, always trying to compensate externally for a body that cannot quite regulate itself internally. It all takes such a lot of work and a great deal of attention during conditions that frequently rob us of stamina, cognitive cohesion and tolerance levels for the very things that help us.

Sometimes we get it right. Sometimes we do not. And sometimes, after days of coping, the weather changes, ostensibly for the better, and the bill finally arrives.

In short, I was longing for variety, for a welcome break from the interminable house arrest of the previous few days, but I also knew, all too well, that to ignore such signs was to risk wholesale collapse, potentially lasting for weeks or even months, which is where summer ‘25 and even summer ‘26 got so precarious.

So yes, I handled the heat somewhat better this year, with all the modest adaptations I wrote about just the other day, experiencing far less active orthostatic hypotension than usual, but that didn’t make it easy or neutral for my body, and the higher temperatures aren’t over yet. With even more to come this week, heating up as I type this, it is still a case of taking the long respites where I can and never forcing what I now realise I can’t manage at the same time as such testing conditions are active, or even in the transition periods between temperature phases. If life has to go on slow mode or get put on pause while I deal with this challenging season, so be it, because the alternative of pushing through, doing more than I can handle on the interim days, with a system that only ever catches up slowly, isn’t worth the hefty cost (learned the hard way).

This means that summer heatwave conditions not only disrupt all my routines, stealing my sensory bandwidth, affecting my ability to regulate dopamine and mood and cutting me off from many of the things that ordinarily keep my anxiety in check; they can continue disrupting all those factors for days after the event. These elongated periods of adjustment end up stealing the more tolerable bridges of time that other people get to grab as opportunities to return to life, replacing them with even more forced withdrawal and the need to pace and manage everything carefully.

Here in plain sight is something I tended to get wrong for years because I always assumed I was like everyone else. Eager to reclaim my routines, I would dive straight back into things as soon as the temperature became bearable, before I had recovered, only to crash all the harder. After more than twenty years of living with chronic illness, I am only now fully recognising that the more tolerable temperatures may herald the crash rather than relief, because this is when I am most at risk of mistaking the external improvement for my own automatic recovery. I suspect I am far from the only person who has interpreted the pattern this way, blaming the crash on whatever small thing they did during the cooler interval rather than recognising that their body may have been presenting the accumulated bill for everything that came before.

These days, I’m forced to admit that the whole season can be a ride, eventually spewing me out of the other end but only after weeks of disrupting my ability to pursue special interests, to hold onto rhythms of engagement that regulate me, throwing my body around between states of enforced lethargy and actual hard crash like a person on a deck in a storm.

There is very little agency to be retained under such conditions except the agency not to make them worse: to flex with what is happening, to take the path of least resistance and adapt my days to what is actually possible, rather than what everyone else thinks summer should look like. It means accepting that the cooler morning after a heatwave is not necessarily an invitation back into life, however much every part of me may be longing to treat it as one. It may be the point at which my body is only beginning to register what the preceding days have cost it.

One mistake I think I tend to make is to look at the weather forecast and tell myself “just one more day to go”, setting the expectation of returning to some kind of normality before my body has caught up with its housekeeping.

Where I can, I have to support myself as though the consequences are still coming, even when I cannot yet feel them: using the tape and bracing aids whenever the temperature allows, keeping up adequate salt and fluids, scheduling horizontal time and leaving far more recovery space around even modest exertion than feels remotely proportionate. Even for a few days after the heat bomb, I have to keep this routine going. This can feel painfully like backtracking after a period of small but steady gains, especially when the weather has finally become tolerable enough to awaken all the desires and impulses that had to be suppressed during the hottest days, but it is not necessarily the same as losing those gains. It is using what I have learned to try to prevent a temporary seasonal retreat from deepening into a much longer crash.

The complication is that staying relentlessly stuck in a state of recovery has consequences of its own. After days of sensory monotony, reduced movement, disrupted routines and very little access to the things that normally stimulate and regulate me, dopamine hunger can become so intense as to be highly aggravating and even sleep-disrupting. The more tolerable weather implies to all my senses that the kind of life I have been missing is back within reach, just as my body is least able to reach for it. Anhedonia begins to gather around the enforced withdrawal and sometimes a carefully judged dose of variety, creativity, human contact or simply being somewhere else instead of on my sofa starts to feel less like an indulgence than a form of rescue, even while I know it may involve a calculated physical risk. It’s a judgment call I am tasked with making every time, going against standard pacing advice but also listening to my neurodivergent needs as a priority, knowing that to ignore them is to create other issues that can also prove to be just as adverse to my health further down the line.

There is no neat answer to that tension, because complete rest is not always neurologically neutral and activity is not always physically affordable. All I can do is make the decision consciously, with as much support and recovery built around it as possible, rather than acting as though a temporary easing of the weather has magically restored my capacity. The feedback available in the moment is not always reliable; heat can mute the warning signals, while the consequences queue up out of sight and arrive much later.

It also means giving up the role I once played so automatically: absorbing the shortfall, concealing how difficult things are and trying to manufacture a recognisable version of summer for everyone else while my own body carries the entire cost. I can say no without constructing an elaborate defence. I can stop pretending that a tolerable temperature means I have recovered. I can acknowledge that this season is often physically, neurologically and emotionally hostile to me, even while other people are becoming more spontaneous, sociable and outward-facing and I am inwardly longing to do the same.

I can do my best to support the nervous system that lives within the painful paradox of all these things converging, so that the emotional load is made as bearable as it can possibly be, because this is no easy reality to live within. So I do what I can to go easy on myself, to put a cork in self-criticism or comparison and to give myself some of the things that bring me quiet comfort or pleasure.

The heat will do what it does, and my body may still react in ways I cannot entirely predict. What I can do is take the delayed response seriously, remembering that getting through the hottest days is not necessarily the end of the exertion and that the apparent reprieve may be the moment when the most care is required. I may not be able to make summer less expensive to my system, but I can stop adding the extra cost of pretending that it is not.

This week, I reached the two-year anniversary of my post-Covid collapse and the long, slow recovery from the much worsened dysautonomia and post-exertional burnout that so badly flared me from early July 2024 onwards.

Prior to that, there had been twenty-plus years of slowly tackling The Big Burnout that set me on the path towards realising it wasn’t just fibromyalgia and chronic fatigue I was dealing with, but the whole kit and caboodle of hypermobile Ehlers-Danlos syndrome, autism and ADHD in a middle-aged body dealing with pre and post menopause in quick succession. And now, it seems, I was set right back again, at least in the physical sense, much as I’d learned about myself along the way.

And yet, recently, there’s no doubting it: I’m starting to notice the subtle turning of a corner, a new stability and resilience creeping back in so cautiously I almost daren’t acknowledge it. I suspect it is the sum of many things, and I want to try to isolate some of them and why they have made a difference.

Any regular readers will already know how severely I have struggled with dysautonomia, especially orthostatic hypotension, for the past year or so, although I can trace it back for decades. How, for months on end, even leaving the house or taking a short car journey became a logistical challenge in the aftermath of the worsening, and how I have had to slowly and steadily build myself back up so I could manage these things without risking another major crash every time I ventured into anything, even the most ordinary.

On top of the original problem of months spent dealing with a level of fatigue and difficulty standing that forced me to focus on Aggressive Rest Therapy for the remainder of that terrible summer of ’24, I was now also dealing with deconditioning brought about by all those weeks of barely using my hypermobile muscles. Left as flimsy as a rag doll, I was now paying the additional tax of the worst Ehlers-Danlos flare of my life, leaving me in no doubt that it was time to get myself formally diagnosed and begin evolving a far more targeted pathway for managing my symptoms and living my best life, according to the now indisputable limitations of my body.

It has been a long old haul, not over yet, and I have covered quite a lot of it in previous posts.

The last time I wrote one of my longer posts, it was to share the success of my recent ten-day trip to Scotland by train, which was one hell of a milestone in more ways than one given what I had been dealing with up until then. I have since managed another week away by the sea for my husband’s birthday, and that also went pretty darned well overall.

Then came the big test: last weekend, I spent a day at the same music festival I attended in 2024, right before my Long Covid crash. In fact, it was the third day of what was supposed to be four days at that festival in ’24 that tipped me right over the edge. Last year’s perhaps premature half-day spent there was also far more challenging than enjoyable, a bit of a sensory nightmare as well as a physical trigger that set me back quite a bit because I clearly wasn’t quite ready for it, followed by yet another flare that made me seriously question whether my festival days were over.

So trying again last week took a degree of faith and optimism I might not otherwise have possessed, were it not for recent noticeable improvements in how well I am coping with upright time, sensory factors and a little bit more physical exertion than at any other point since before Covid.

Some of those improvements had their roots in big efforts made last year: the long trawl of getting proper diagnoses under my belt, from hEDS to MCAS, orthostatic hypotension to autism. That “let’s get this thing named and taken seriously” endeavour was, in many ways, the main focus of 2025 and it bought me quite a lot of traction, if not quite in the “now my GP will take me seriously and help me” sense, since so much of it has been left down to me to make the necessary changes and follow through.

There was also the slow drip-drip effort of daily movement following Jeannie Di Bon’s Zebra Club material designed for hypermobile bodies, even when they are bedridden or coming out of a flare, since she pitches the material at exactly these scenarios, meaning you can start wherever you are at. I began following her methods more or less daily from the end of November 2024, finding it a huge benefit.

I also saw a couple of different physios last year, after years of avoidance (since my track record of actual benefit was so very poor), although that was often more setback than progress again because of the ever-pervasive lack of understanding of all the ways hypermobile bodies are different and require a modified approach.

With time and patience, I gradually reached the point where I could walk around my village without having to lie down on every bench or crash for the rest of the day when I got home. Custom orthotics made for my shoes were a massive breakthrough and my increased use of supports, such as an SI belt, added another layer when it came to modifications that made movement more possible without repeated injuries. It was slow work, with a few setbacks, but I made baby steps in generally the right direction.

One of the other seeds sown last year was starting Low Dose Naltrexone, which I had by then encountered so many times in my research, touted as a potential reboot drug for post-viral recovery and complex chronic illness, that I became quite determined to try it. Used off-label for these things, at very low doses, it is thought to help regulate immune and inflammatory signalling, including neuroinflammation, while also influencing the body’s own endorphin system. In my usual way, I read all the books, listened tirelessly to the LDN Research Trust podcast and followed the forums for quite a while before taking that next step, but there was enough emerging evidence and patient experience around it to make me want to give it a go.

As LDN isn’t prescribed on the NHS, I obtained it through a private prescription, which was easy enough to arrange, and began with the sublingual version (generally a better option for sensitive systems like mine) at the end of last May, excited to see what would happen next.

Exactly a year later, I finally reached the recommended maximum dose of 4.5mg, having stepped backwards and forwards with titration for months due to a couple of minor side effects in the beginning slowing me down. Since one of those effects was temporary disruption of sleep, I had to keep winding back the amount I was taking until it no longer interfered with my already fragmented nights for the first few months, eventually reaching the higher doses at the very end of last year.

In that year-plus of taking it, there’s no doubting that there have been measurable changes in my health. Some relate to big improvements in my recent blood tests: sky-high thyroid antibodies almost back to normal, no longer pre-diabetic, inflammation markers way down. Across the course of the year, I’ve also watched my extremely active MCAS calm to the point where I can now eat out with relative impunity, as long as I don’t choose anything silly and continue taking precautions such as DAO with meals, daily supplements including quercetin and luteolin, and my regular fexofenadine.

Quietly, without fanfare, there have been small but significant territory wins: the unmistakable reduction of episodes of interstitial cystitis and the overnight bladder frequency that have plagued me for years. Reclaiming some fruit back into my diet without the endless rounds of SIBO that used to come with it. Less gastrointestinal discomfort in general and far, far less reflux, gastroparesis or IBS-type flares. There have been far fewer niggles from a long-time problematic tooth, fewer skin irritations or eczema patches, better tolerance of standing to cook and then digesting the food I’ve prepared (compared to last summer, when I was forced to order in a freezer-full of intolerance-targeted microwave meals to get through the desperately symptomatic summer months). Just more tolerance bandwidth of things in general, I would say, since taking it, so it’s all been a bit of a miracle in hindsight.

I was also prescribed ketotifen by my allergist last summer but opted not to take it because of the risk of adding to my pre-existing burden of fatigue and brain fog and, to be honest, it feels to me as though LDN has done far more for me in that time than ketotifen might have done. I now feel more or less as I did before Covid came along in terms of the stomach-related MCAS load which, let’s face it, has always been hovering there for as many years as I can recall, but it no longer feels like a forest fire I have to put out from scratch every day. In fact, it really feels like the positives of LDN have stepped up another level in the month since maxing out the dose, so I am pretty confident it’s a great thing to have in my repertoire, as there are no remaining side effects, plus the cost is negligible.

These days, my overzealous mast cells mostly remain active in response to other triggers than necessarily food, such as stress, contact or exposure. The very fact of the need to reframe what mostly triggers them in these terms has offered huge insight into why mast cells are so very active in a system such as mine because I see now that they are far more involved in the whole-body response to “life” than I previously appreciated.

Because when you are hypermobile, there can be a basic lack of physical safety being fed back to the nervous system by the environment all the time. This is partly because of compromised joints, over-sensitive or fragile skin, etc., but also because of reduced proprioception: an unreliable awareness of where the body is in space, how one part joins to another and how those parts are meant to move together.

Looking back, I can now see how these things have challenged me for absolute decades, and how neurodivergence joins in because there is no clean dividing line between my autistic sensory perception and my experience of inhabiting a physical body that sends unreliable signals. That same neurodivergent nervous system is prone to receiving extremely muddled information from my joints, muscles, balance, skin, sound, light and environment, and trying to turn all of it into one coherent sense of where I am and whether I am safe, so no wonder the sensory environment affects me more than the next person. There’s simply no pulling out the neurodivergent sensitivities I live with from the hypermobile way my body tissues are made up.

A fundamental weakness in proprioception is there in almost everything I do and, truth be told, has always been there, with clues I can track back over decades of struggle. It isn’t helped by the hyperfocus of autism or the distractibility of ADHD, which usually have something else more interesting on their mind or in their sights than focusing on the whereabouts of my body in space or how it is feeling in any given moment.

Put together, these things leave me increasingly compromised in the post-menopausal world of altered collagen and tissue support. Often, it is the little things: vibration in a car, wind on flesh, shifts in temperature, a new environment or a change of position, that can floor me the most. And when my body feels threatened by such things, it is often my mast cells that shout the loudest.

I wrote about this in my Scotland blog in relation to vibration urticaria, which landed like a giant lightbulb moment when both travel vibration and sea wind affected me during that holiday in ways I could trace back through every post-Covid car journey, where the extent of the crash afterwards didn’t seem to match the level of exertion, every to-be-avoided winter draught felt across the back of the neck, and every dental hygiene appointment that somehow flared me for weeks on end afterwards. I could track it to the way friction or jostling of any kind can be enough to unpick my entire nervous system, going back years.

With that understanding came new insights, gathered during small, everyday moments as I began paying closer attention to all the many incidents in which my hypermobile body felt suddenly compromised. Not always because of bigger things such as weak knees or a subluxed hip, but because my body didn’t feel generally safe in the environment or in the face of everyday gravity load.

So another big milestone came when I began experimenting with taping my neck using kinesiology tape. I had been using kinesio tape for about a year by that point, mostly across my forever-compromised SI joint region or over my knees. The SI issue got so much better once I discovered that using tape or a band to pull the joint in tighter not only offered me greater stability but also vastly improved proprioception, which then enabled me to walk further, for longer, without injury. Then one day, during a neck hypermobility episode right after a long car journey home, something made me cut a couple of small strips and place them along the line of my scalenes at the front sides of my neck, anchoring them near my collarbones with enough stretch to be felt but not enough to distort or cause damage.

That was in early June, shortly after our most recent trip away, when exposure to sea breezes across my neck during some incredibly blustery walks had caused real niggles with my overall stability, resulting in wholesale wobbles in my functioning for a day or so each time my neck got involved (like my neck was some sort of lynchpin to every other nerve and fibre in my body).

Here was the big revelation. As soon as I tried the tape, I immediately, and I mean within the hour, felt so much more stable in general; more robust somehow, and even more upbeat in my mood than I could explain. In fact, I suddenly found myself rushing around the place tackling all the household tasks that had built up for months, as though I were almost, dare I say it, back to being a normal person again.

Of course, I overdid it and regretted it, but the message was still there underneath the zeal: I had discovered something important about my cervical instability, which has been a central feature of my hypermobility for as long as I can remember.

Because upper craniocervical instability, or UCI, is a fairly big deal in the world of hypermobility, found to affect between 52 and 66 per cent of people with hEDS/HSD (taken from Jeannie Di Bon’s most recent article on the topic), with severe cases affecting about 5 per cent, and very often left undiagnosed.

In my own case, I only gradually came to recognise the signs and symptoms of it from my early fifties, even though I have had unmistakable symptoms relating to it for much of my adult life, looking back with the benefit of hindsight.

Symptoms can range from headaches and neck pain to dizziness, vertigo, numbness and tingling, shortness of breath, choking, difficulties swallowing, sleep apnoea, memory difficulties, hearing issues, various vision issues such as blurred vision episodes, auras and tunnel vision, and presyncope, on which list I can tick most of the items as having had them at one time or another. Also (something which had left me wondering for years why hands-on treatment often left me so badly flared, not just in my neck region but across my whole symptom pattern), certain techniques commonly recommended or used by physios and such, including chin tucks, hands-on releases to supposedly hypertonic neck stabilisers (wrongly assumed to be overstrong when they are actually weak and overcompensating) and neck isometrics, can make UCI considerably worse. I found this out to my absolute detriment, once again, at the end of last year when a couple of supposedly helpful neck treatments left me in a far worse symptom state than ever in time for Christmas.

And, just to say, the more severe end of these symptoms needs urgent assessment if they occur, so this is certainly territory to make yourself aware of if hypermobile.

For quite a few years, I had no grasp of the rationale behind these kinds of issues and simply put up with some of my own more bizarre symptoms and backlashes, which became decidedly worse around menopause and again after Covid. It all made a lot more sense once I looked into it through the lens of confirmed hypermobility last year.

Because in a hypermobile body, the neck is often asked to perform the impossible task of supporting and accurately positioning the head without reliable ligamentous stability. The surrounding muscles then have to work all the harder to compensate, often becoming tight, exhausted or poorly coordinated rather than simply “weak”. This can affect not only the neck itself but the jaw, shoulders, balance, visual processing, headaches, proprioception and the way the nervous system interprets movement and threat.

The result can be far more complex than any ordinary neck pain. It may include the sense of having a head that is too heavy, a “bobble-head” feeling, difficulty holding the head comfortably upright, or a body that becomes strangely disorganised when the neck is tired or unsupported, or which responds in a seemingly exaggerated way to being jolted, vibrated or otherwise put under positional or environmental strain. These had been my experiences for literally years and perhaps shed light on how guarded I have tended to be about my neck, including a long attachment to wearing scarves both indoors and out.

I had also come to slowly realise, over that time, that when my neck felt unstable, several things were often happening at once. It was not only the increased potential for neck injury, to overextend over a computer or easel and regret it later, or the sensation of my head being too heavy for my neck. Not only the hideous headaches and nerve pains frequently referred into the trigeminal region, potentially flaring the intense neuralgic headaches I’m prone to, my lifelong ear and TMJ issues, the phantom tooth pain that comes and goes, the ever more frequent visual disturbances and so on. Not only the whole range of weird dysautonomic effects I was prone to, from palpitations and ectopic beats after too much upright time, to random feelings of panic, sweating, temperature swings, gastric issues such as reflux or slow motility appearing out of nowhere.

There was also a fundamental loss of feeling safe, capable and even contented or joyful in the world: a flattening of mood that has become all the more discernible to me at times when my neck feels most compromised, a feeling of something being “off” or of being “spooked”, you could say an unnerved feeling, like I am waiting for the other shoe to drop.

So what I had discovered here with the tape felt utterly pivotal. When I wore it, I felt suddenly “invincible”, by which I don’t mean that I was capable of facing down literally anything, but at least capable of having a go, of showing up and being somewhat viable as a functioning human being.

Whereas, for the past two years, I had felt anything but, claiming the label “disabled” faster than at any other time in my life, surrendering my ability to drive, to even leave the house alone at my worst. Every ordinary situation beyond my routine now seemed to challenge me, and I lost my capacity to manage things, to have the necessary bandwidth for life, hand over fist, feeling more and more sensorily challenged and not really sure if this was an effect of unmasking my autism or something more fundamental going on. In short, I was withdrawing from life, fast.

Since moving into our new home, I had routinely avoided neighbours keen to chat, not because I was unfriendly or even because of autistic social struggles as such, but because to chat meant to stand, which meant to falter against gravity, then pay the heavy price later when the need to overcompensate with bracing and adrenaline meant a delayed crash that would come in like an aftershock: heart palpitations, post-exertional malaise, sleepless nights, worsened orthostatic intolerance and dizziness the next day and so on. The friendly woman two doors down, who had purchased two paintings from me after we moved in, kept on inviting me to pop over to see them hanging on the wall when she saw me on the street, but I kept on making excuses, painfully aware how aloof and even rude I was making myself seem. It was still the easier option, compared to trying to explain symptoms that nobody else could see, let alone understand. However, it was not an auspicious start to joining a new community.

So going back to the tape, over the next few days of experimentation I discovered that taping my scalenes was doing three distinct things: providing neck support and, with it, likely helping local circulation, drainage and irritated nerves; improving proprioception to a key part of my anatomy, since the neck is so intrinsic to our sense of where we are in space; and serving as a form of vagal stimulation. I even speculate that the tape's subtle annoyance was itself doing a crucial job of feeding back data about my neck’s position in space that was normally missing. Similar to how chronic pain can become a rather distorted way of improving proprioception in a body where feedback is lacking, because the body resorts to extreme measures to plug the gap.

In fact, there is a whole school of thought suggesting that cortical mapping, the brain’s map of where the body is in space, can be extremely compromised in a hypermobile body, likely getting worse with repeated injury, post-viral load and loss of collagen through ageing. This means that any approaches that help the body to relearn and re-memorise where limbs and body parts are in space can be a genuinely useful way of regaining some function (like that SI belt I previously mentioned), and taping is one of those methods. In my case, since I can’t abide the kind of compression clothing that is often recommended, the tactical use of the odd bit of tape can really be my friend.

By positioning the top of the tape just behind my ears, I was offering continuous, subtle sensory feedback in an area closely involved with vagal regulation. I could therefore feel the tape there the whole time, not usually intrusively but enough for my nervous system to register it, and the effect was both calming and organising. I was so fascinated by this effect, I looked it up and found videos on YouTube advocating taping the neck for vagal stimulation. So apparently I hadn’t invented it after all!

Then, if I needed any proof of how powerfully helpful this was in my case, it came in the form of a few days when I was suddenly forced not to wear it at all because I became so reactive to the adhesive during one of the hot-weather spells. Though I had used this same brand of tape for months, albeit on more resilient areas of flesh than the delicate area around the neck and chest, my skin suddenly flared so badly that the tape had to come off completely to allow my skin to heal. I was then abruptly left without it for about a week, which doesn’t sound all that long. However, in that time, I felt profoundly different by comparison, even when in bed, and began counting down the days until I could put some more tape back on there again, now greatly concerned that my tolerance of this particular tape might have passed the point of no return with my MCAS.

During that time, the subtle but undeniable sense of low-level insecurity and even flashes of anxiety I was used to living with returned, not in such a way that it was really that conscious or explainable in the moment, but as something subtly “off” that I couldn’t quite put my finger on, and even my mood shifted from being so much brighter to considerably more flat.

My general physical stability backtracked over a matter of days: less upright capacity, less bandwidth for walking out or sitting at the table, and far more fatigue at the end of the day. I injured myself more than once during that window, not only by overextending my neck but also from simply moving around the house or walking in a less organised way, as though my general proprioception had also been set right back.

Other issues throughout the body cascaded that week, from a thoracic outlet flare-up to an unstable SI joint again, filling me with aches and pains (it was as though the neck issues referred downwards). I began to dread the upcoming music festival, feeling as though I couldn’t manage it when I had been really looking forward to it just a few days before and, really, nothing else had altered; even the weather forecast was on our side with ideal temperatures predicted between two heat waves, yet my mojo had been lost.

Thankfully, I managed to source an alternative tape with hypoallergenic adhesive just in time for the festival and am glad to report that putting it back on the day before we attended made all the difference, meaning I was back to coping with being upright and more mobile again, regaining that rare feeling of actually looking forward to it instead of worrying about it for once. That return of optimism at the eleventh hour turned out to be well-founded because the whole thing played out so well this time.

Yes, okay, my version of a festival these days isn’t quite the same as my old version. It involves making our way to the disabled area in one tented venue and staying there for as many hours as we can, without all the chasing of acts from stage to stage that we used to do, then moving to the disabled section in front of the main stage in time for the main evening acts and leaving early. It no longer involves hanging around in bars, exploring every nook and cranny of the site, lying on the grass listening to pop-up performances, drinking alcohol, eating junk food or staying until I’ve danced my feet off, which is how it was four years ago.

Yet this is now my doable version of it, and if there’s compromise in that, then it’s a compromise worth making to do it at all.

Because this time, there was no anxiety at all, no crowd overwhelm and no major sensory sensitivity. I didn’t need the earplugs or dark glasses I’d brought with me, didn’t have to withdraw to the car or a quiet corner behind a tent to get away from people or noise, didn’t get overwhelmed by trips to the portaloo or find myself secretly wishing I was back at home. I coped with all the other people sitting quite close to us, even exchanged a few words and chatted to some of the artisans. Then I managed to eat a carefully selected meal from one of the vendors rather than having to bring “safe” food from home, with zero after-effects. These are all such significant milestones, winding me back to the kind of experience I had the very first year we attended, the year before Covid.

Above all, I slept really well when I got home, with none of the adrenalised tossing and turning leading into a crash that followed the previous two festivals. There was no aftermath beyond expectable tiredness and sitting-posture ache; no post-exertional malaise, no major crash.

In short, it was a very different experience from the previous two years. All because my neck felt more stable? Not completely, but I know it played a very big part. In more ways than one, I felt more stable, more capable, less assaulted by everything, and that made all the difference.

Behind the scenes was another very significant shift adding to the effect: the addition of slow-release sodium tablets from around the middle of May, just in time to have them on board before the hot season arrived, seeing me through one trip away, the festival, and some extremely intense heatwaves that have taken temperatures up into the mid-thirties more than once this summer, including today as I write this.

Heat intolerance is a very old issue of mine, made a dozen times worse by Long Covid, but this year, so far, has been so much better. While the effects of heat still aren’t exactly pretty in my system, and there’s not much I can manage to do except lie there once temperatures soar, I’ve coped so much better, and I’ve not been utterly destroyed by it. This, I feel, is down to the addition of sodium.

I had already been drinking electrolytes like a fish since August 2024, more or less immediately following the Long Covid crash. In fact, this was one of the things that got me back on my feet from being more or less bedbound that summer. Before that, I had underplayed my need for them for years, despite experiencing significant dysautonomia for decades. My brand of choice is LMNT because they don’t contain sugars or any unnecessary ingredients, and I can simply add the powder to mineral water two or three times a day and chug it back as needed, all year round but greatly increasing my intake in summer to compensate for the way heat-induced vasodilation expands the vessels, drops my pressure and leaves too little blood circulating where I need it.

So for a long time, and especially now that I drink electrolytes daily, I told myself there was no need for additional sodium supplements since I already added plenty of salt to my diet and ate salty snacks, but it turns out I was wrong.

It came about because slow-release sodium was strongly suggested by the functional doctor, a specialist in hypermobility, with whom I began working in May. Because she recommended it, I finally listened, although I’m so glad I didn’t simply follow the suggestion to begin with two tablets at a time and aim for six to eight of them a day from the outset.

Because what immediately became apparent was that there is a definite sweet spot in my system, as there always is with anything I “take”. Just a bit too much sodium, I quickly learned, could lead to intense muscle rigidity, headaches and all-over pressure pain, likely compounded by the fact that I am also dealing with fibromyalgia, neuralgia, Raynaud’s and various regions of my body competing for different conditions, my head in particular not liking this sudden increase of pressure at all; likely something to do with the UCI I just talked about compressing blood flow and nerves. So with two days of intense pressure headaches behind me, after not having them for months, I paid attention and rethought the dosing.

However, I didn’t give up and, through trial and error, found that on hot days my sweet spot was one sodium tablet three times a day, beginning with the first one taken half an hour before I get out of bed in the morning, but reducing down to two or even one tablet on lower-pressure, cooler-weather days when my blood pressure and upright compensations simply did not require the same degree of support. These are things I can keep an eye on using the weather forecast, my Hilo blood-pressure band, my Garmin statistics and, most importantly, how I actually feel on the day.

Now that I am fully into the swing of it, I can confidently say that adding sodium (in just the right amount) has been a game changer. It has taken me from barely being able to stand reliably on days when the temperature rose above 22 degrees to going out for a walk at seven o’clock this morning, when it was already 24 degrees, because I knew I needed the movement more than I needed another sedentary day on the sofa fending off temperatures in the mid-thirties by the time I was having my breakfast. Because when I don’t get to move every day, the pressure and pain in my body only compound, plus I risk returning to that deconditioned state of two years ago. So being able to get out at all, which is more than I could manage in last year’s heatwaves, is a bonus bought for me by taking sodium, added to the neck tape (especially as hot weather makes all of my body more prone to laxity, thus injury).

The bonus of sodium is that it has enabled me to get by without constant reliance on compression garments that I find uncomfortable full stop but utterly intolerable in the heat.

It has made the difference between swooning to a standstill by three o’clock every afternoon during the Scotland holiday in April, needing a minimum of two hours’ fully-horizontal rest every day before doing anything else in the evening, and now being able to get away with maybe just half an hour’s lying down rest, even skipping the horizontal time altogether if it’s the kind of day when it’s simply not possible to claim it, for instance at the festival last weekend. Just so long as I sit down and elevate my legs when I can (a small folding footstool doing the trick on the festival day), I am generally managing to get through the daytimes in a far better state, orthostatically speaking, than before I began using sodium, which feels so hopeful.

All of these things are serious milestones worth celebrating, but where they can be attributed is a matter of debate. Is it the neck tape? The sodium? LDN finally reaching its optimum dose? Is it the steady core strength that daily Pilates is bringing back on board, supported by exercises contributed by the online hypermobility-friendly physio I now work with every fortnight since March, who works with my neck and other vulnerabilities, not against them? Is it all the other stuff that is starting to get attended to with the functional doctor, on the back of recent blood panels, leading to new supplements to fill metabolic gaps? Is it the more balanced diet I can now manage? Is it the better sleep from no longer sharing a bed (as written about recently)? Is it the confidence that comes from finally holding all my diagnoses together, allowing me to self-advocate, claim accommodations, stand up for myself and stop apologising for taking up space just as I am? Because that has also started to happen this year, meaning the person stepping out into the world feels very different from the person doing similar things even a year ago.

To be honest, I think it is all of these things combined, becoming more than the sum of their parts.

The more upright I can be, the more my core strength comes back on board with a snowballing effect that can’t be planned but is the natural consequence of muscles remembering what they are meant to be doing all over again, simply from living life.

The more core strength I can call upon, because of physio, exercise and life itself, the less my body has to resort to adaptive but not always appropriate substitute strategies such as bracing and spasming muscles and connective tissues, impinging nerves, drawing on reserves of adrenaline simply to get through ordinary situations and crashing the nervous system in the process. The more able I feel to stand, walk, talk and move without feeling as though my body is about to cave in or something is going to rattle me, the less unsafe I feel. I become more robust, more genuinely calm and even happy in situations that had begun to feel downright unnerving or threatening over the previous two years.

And yes, my general sensory sensitivities have begun to settle down again because I genuinely feel safer when I am out in the kinds of places I choose to visit. This isn’t to say I don’t still have a long list of places and situations I actively avoid. But my track record of outings that have proved successful lately is getting longer, and that feeds back into the momentum of improvement.

Yet it’s still very early days, and I am not going to take anything for granted just yet, not because it isn’t real, but because I know how precarious these small, tender triumphs can be and how overconfidence can quickly overshoot me, landing me back in the territory of overwhelm and crash.

And because I now understand far more about this neurodivergent system of mine, the way it all intersects and how nothing happening within it is truly isolated from anything else. One adverse factor can cascade through the rest of the system in no time at all, so it only takes one thing before wholesale backtracking occurs. I’ve learned that the hard way more times than I can count. I am also circumspect enough and wise enough after all these years to admit that I still don’t know it all. It remains an ongoing, never-ending task of learning about myself on the job, a vast collection of lived experiences and tireless detective work, endlessly pattern tracking, plugging gaps in the medical understanding that no one else is ever going to fill for me because they simply don’t have my particular neurodivergent body or nervous system to work with.

Having to keep on doing that, to be involved in it all so minutely, still feels so much better than withdrawing from life or accepting second best when such a large part of me still wants to get up and outside doing things, living a life that brings joy, variety and excitement. This outward-looking part of me is a key part of my AuDHD mix and can become very quickly flattened when my life is made smaller by physical limitations that say no all the time.

So the power to say “maybe” or “I’ll think about it” is enormously important for me to reclaim, and it is doing a great deal of good for my morale right now to be back in that place. It’s just so important to me to have that morale back and to be feeling far more optimistic about life, going forward. It's my own private celebration to feel like this and doesn’t require an audience to be real (though part of me wants to shout it from the rooftops, to have people feel pleased and relieved for me).

Yet there is a downside to trumpeting better news about functionality, too soon, to others, and I had that demonstrated to me just yesterday when somebody whose opinion of me I really care about WhatsApped me to invite me to a gig in London in a few days like it was something easily within my capacity to go to. As though everything I had spent the last couple of years conveying to them, at some considerable cost to my emotional bandwidth and pride - all that transparency about my highly challenging complex health, my daily struggles, and my very real limitations when it comes to capacity and travel - was just noise with no substance.

I was left reeling and feeling stomach punched, dropped suddenly into a kind of grieving state for the version of that person I had been imagining all this time; someone I had painted in my mind as a quiet ally in the daily struggle, as one solitary person outside of this household who had finally got the memo and seen me exactly as I am, unmasked, and no longer needing me to cover up or endlessly explain what I am dealing with here. Apparently not if they just thought I could hop on a train and stand in a crowded venue, eat whatever food, spend the night in a pub or Travelodge, then catch the train back unscathed, like the good old days. It was like losing someone, the believer, and it was also like grieving for the version of me that would have done all that stuff in a heartbeat if I had the capacity.

It was the stomach punch of invisible disability yet again, and it got right under my ribs before I even noticed it coming towards me.

It made me wonder whether I should have kept quiet about the successful Scotland trip or the festival because they inadvertently signal to those who don’t get it “I’m fully functional now; back in circulation; curfew lifted”. This is where telling other people gets genuinely complicated and self-defeating, pushing you towards keeping quiet about the very things that you would like them to be able to celebrate with you, which only compounds the ubiquitous sense of loneliness that is such a big part of the disability experience. Not only do you struggle to share the hardships due to sheer lack of relatability, but you can’t even share the highs for fear of misunderstanding.

What other people can still fail to see, however carefully you try to convey it, is the effort and load required to make those few successes possible. They do not see all the hours of research and visualisation beforehand, working out where I will sit, how far I may have to walk, where the toilets are, what the lighting and noise might be like, whether there are steps, queues, crowds, draughts, or nowhere to rest.

They do not see all the advance emails to hosts, restaurants and venues asking about access, seating, ingredients or accommodations; the carefully pre-booked travel; the luggage full of medications, supplements, electrolytes, supports, braces, tape, emergency food and sensory equipment.

They do not see the buffer days built around the activity, the decision not to do something else to save energy for this one thing, the comfortable room selected months in advance because the wrong mattress or a noisy environment could derail the entire trip, or the need to arrive somewhere well before exerting myself and leave enough recovery time before travelling home, making fast-turnaround trips unviable.

They do not see the constant calculation around heat, vibration, upright time, food, sleep, blood pressure, pain, sensory load and whether somewhere provides an escape route when my body suddenly says enough. A successful outing does not mean those needs have vanished. It means I anticipated them, built around them and was fortunate enough for the plan to hold. The holiday, the festival, took months in the planning, which is not at all the same as a day’s impulse to buy a ticket.

Yet I will not let that singular moment detract from the important milestone I feel I have reached, two years to the month since I fell back into a crash that felt as bad as, if not worse than, my original health collapse in 2006 and which, with strange symmetry, has also reached a significant anniversary. Next month, it will be twenty years since I was forced to give up office work, although I had no idea at the time that I would never be well enough to return to it again.

A great deal of water has flowed under the bridge since then, and it has been an incredibly long, slow journey towards far better self-understanding and a constant process of reframing the past through more informed eyes.

If there is one thing I have learned, it is that none of it can be pulled apart from the whole that is me. So in a sense, I am all the more whole now for knowing this.

The hypermobility, the propensity to burnout, the post-viral patterns, the long-slow recoveries, the setbacks, the sensory sensitivities and the proprioceptive differences that can make a body like mine experience the environment as abhorrent, or at least exceptionally challenging, are not unrelated strands.

The way I sense myself, the way I locate myself in space, and the degree to which my body feels safe and supported all have a profound impact on how my physical symptoms play out. When that sense of stability is lost, whole cascades of dysfunction can ripple through the entire system. When it improves, when I feel more physically coherent, better supported, and more securely situated in my surroundings, the effect can travel just as widely in the opposite direction.

None of it can be neatly separated, and it is a mistake even to try. There is no way to pull out the single thread of my sensory perception and claim it has nothing whatsoever to do with how my body behaves in relation to gravity or movement, how it responds to stress and strain, or how able it is to remain upright and mobile in a world that presents challenges around every corner. Just as one strategic loss of capacity can cause the whole system to cascade, one inch of regained tolerance is like a hundred-mile territory gain in a system built like mine. It can open up the whole landscape.

So my work here has not simply been about getting to know myself better, but getting to know myself in relation to all those things. In relation to the contradiction that, on one side of me, I recoil from certain experiences while, on the other, I am a sensory seeker who needs to experience life on the outside, to receive novelty, feedback, excitement, beauty and more.

The longer my life remained compromised and locked down by limitations this time, the more determined I became, not to conquer my body exactly, but to understand it well enough to claim a life that can accommodate me. And I don’t mean a smaller imitation of somebody else’s life, nor a version based on pretending my limitations do not exist. I mean one expansive enough, supported enough and flexible enough for me to thrive within it.

For now, perhaps that is the milestone that matters most. Not that I am suddenly recovered or free of limitation, but that the word “maybe” has returned to my vocabulary.

After two years of so many noes, feeling hopeless and stuck in a world that felt far smaller than ever before, that one thing feels quietly enormous.

I couldn’t remember the last time I’d been into a shopping mall, but yesterday I wanted to get a particular shade of blue thread for an invisible mend from John Lewis, since we were in town for an exhibition, and we cut through the main branch of Boots to get there; two shopping experiences in one.

As soon as we were inside, the lights rendered both of us so vision-impaired and overwhelmed, not to mention energy zapped, a phenomenon I first noticed when they first began changing them over to LEDs a decade or so ago which was, strangely enough, right before I began grocery shopping online to avoid the weekly post-supermarket crash.

Whatever the failings of the old-style lighting, current shop lighting is no longer passive to me: it’s as if the particular spectral quality, flicker and cool-white glare of it are far and away too much for me to process without pain and distress. It feels like something that is virtually weaponised against my senses, even before I’ve attempted to take everything in that I am seeing, to sufficiently navigate and find what I’m looking for. It feels like an outright assault.

Whereas my other half just generally finds the whole experience disorienting, in seconds losing all sense of where he came in and how to get out again, like a game of blind man’s buff has spun him around far too many times. To him, every display looks virtually the same; designed, like a maze, to confound all sense of direction and to entrap him with obstacles. He only ever gets through it by closely following me, finding a seat (assuming there is one: increasingly rare, as this invisibly disabled person can testify) and dissociating entirely. Eventually, he ends up pleading with me to get my errand done, especially if I’ve fallen into one of my indecision trances, as I so often do when most overwhelmed. When we finally get out of there, we share the kind of relief you’d expect from two people who just saved each other from drowning.

As for the perfume sections made virtually unavoidable by their placement by the door of these places (the one in Boots has now grown considerably to compete with the one in John Lewis; I still remember when it was mostly a chemist shop), the heady explosion of it is like a sudden sensory grenade going off in my face, dense with whatever mix of solvents, fixatives, volatile compounds and undisclosed ingredients makes modern scent so aggressive these days. How people so casually walk around in these places, browsing as if it’s just normal and even pleasurable, I have absolutely no idea. Staff must surely suffer from chronic headaches and chemical exposure overload after a few days.

On top of the sensory assault, I also noticed in myself a kind of drug-induced trance kicking in and a compulsion to it all; like the more it overstimulates me, the more that dopamine-hungry part of me wants to explore whatever my eyes land on. It wants me to frenzy my way through it, searching for something obscure, even when I actually want or need none of it except whatever I’ve actually gone in there to buy. It’s like a forced amnesia takes me over, leaving me exposed to every suggestion while I try to hold onto my mission.

Suddenly experiencing it again after such a long time, I could grasp how the more ADHD-dominant younger version of me found herself so compelled by that which was simultaneously confounding my senses.

In hindsight, it seems like I was addicted to the overstimulation itself, an addiction derived from the act of searching and sifting for something almost impossible to find; the chemical surge derived from the very challenge of hunting down such a vague concept against the very steep tolerance odds that made the act so pressuring. Like an exam I’d left to the very last minute to revise for, or a particularly hard level of a game, the very endurance of it fed it.

It was also as though the possibility of newness and novelty, even the momentary thrill of then risking the poorly judged impulse to purchase something (sometimes, just so the sensory torture would end) followed by the very high risk of regretting it later, was its own bundle of sensory stims. The whole drama of it: the endurance, the quest, the enactment of a whim, the hot jet of adrenaline, even the promise of remorse that would entertain my overthinking, all packaged together as something bordering on ADHD reward fulfilment.

Years of shopping addiction were suddenly seen for what they were in a moment’s echo from the past, experienced so viscerally when the escalator-ride overview of the entire shop floor brought back a flashback of the AuDHD shopping drug these places contrive through their sensory onslaught and their relentless insistence that we want or need everything on display for our actual survival.

Both parts of me got their fulfilment: the guarantee of stimulation, the need to research and strategise (even, to strategise financial survival after the event), shopping had it all, until it didn’t.

And it’s true, when I was much younger and had energy, I used to trawl through shopping centres like I was being compelled by an outside force, sucked into them for hours upon endless hours of hunting for something, though I hardly ever knew exactly what it was or why I needed it so badly.

Then something abruptly changed, became more aggressive about the sensory environment, and I changed too; menopause happened. My tolerance disintegrated so utterly I was forced to write the experience of these places off as something to be avoided at all costs.

In fact, for two years now I couldn’t have endured this short shopping mall experience at all, even the mildest exposures to city-style shopping completely flooring, triggering post-exertion malaise, dizziness and shutdown. It’s testament to my increased resilience lately, two years to the month since my post-Covid collapse, that I was able to sustain the brief pop-in at all without having to cancel my day. As it is, I still feel a bit shell-shocked today and my sensory tolerance is extra low.

When I have the rarest of needs to go back, like yesterday, I’m always so astounded that, to most people, these places are fully integrated into their experiences as ordinary, tolerable or even desirable locations to hang out in. To me they are hellish, a non-benign contrivance of mental, physical and sensory disturbance, all part of a giant consumerism-coercion project that doesn’t even bother to disguise itself anymore, dystopian and quite disturbing to behold ... yet utterly normalised, it seems.

I’ve lived for years with the paradox that some part of me desperately craved friendship and yet the bigger part of me struggled desperately with this very thing, a topic I covered at length in an earlier post The Friendship Patterns I Didn’t See. More recently, a lifestyle that is necessarily pretty home-bound due to complex health issues, together with a complete change of location after forty years in a different part of the country, had more or less decided it for me: there was nobody left. At least, nobody to come round or meet up with, asking after me or being on hand in a crisis that way we’re lead to believe is standard.

Basically, I had come to accept this as my version of normal. My otherwise busy life filled with interests, living with my retired husband and with the occasional visits from my daughter and other family members, was usually quite enough, and the problems that came with being more sociable tended, by and large, to outweigh the benefits given my health circumstances.

Yet for a long time I worked extremely hard at keeping the few friendships I had going, though I increasingly struggled to maintain them, a lifelong weak spot, more lately attributed to neurodivergence, made even more obvious by years of chronic illness, disability and burnout.

Making new friendships has been even harder under these circumstances. I particularly struggle with small talk and have found that it is almost impossible to reach the heart of a potential new friendship without first struggling over those oh-so tedious “getting to know each other” (at a snail’s pace) foothills of trivia to get there. Most of my more recent attempts at making new friends have quickly fizzled through sheer lack of stamina and loss of interest in the early stages.

Put quite simply, I just can’t be bothered with the immense effort most of the time, not anymore, since lack of friends doesn’t really alter the quiet and contained life I’ve become so accustomed to.

I also have such a deep loathing of feeling beholden to keep in touch or meet according to a regular schedule and am far happier with the casual arrangement of popping up whenever the mood, energy and circumstances happen to align, which is not always something other people are prepared to make do with. All in all, between health limitations and demand avoidance, I have not been in the strongest position to make much of any friendship opportunities during the twenty years since I first withdrew from my previously busy life for the sake of my health and watched my older friendships fall by the wayside because “I changed” and “became boring” overnight.

Since then, I have just gone along with these circumstances, seldom stopping to question them because there were always other priorities far more pressing than counting how many friends I had left on the fingers of my hands.

I gradually learned to live without much face-to-face contact at all and, given my anxieties and dread around certain social behaviours, some of that came as genuine relief, letting me off the hook of the kind of expectations I had, by now, worked out didn’t suit me.

However, through thick and thin and the long-slow business of disintegration and rediscovering myself, there has always been one friend remaining. For forty years, since we first met at university, this friend and I have ebbed and flowed effortlessly alongside one another in spite of the distance between us, our regular conversations conducted first by letter, then email and now DMs.

Across those decades we have almost never managed to meet in person except for a catch-up in London years ago, on which occasion we talked for six solid hours without pause, virtually being asked to leave the place we’d gone for lunch because we’d outstayed our welcome. This itself says something because I only ever manage easy or long conversation with people who genuinely hold my interest and who take a real interest in me. Of course, we made plans to do it again but then lockdown happened and we never rescheduled.

After we moved, I no longer lived close enough to make a day trip of it, especially given my much worsened health, so perhaps I should have seen it coming when she announced that she and her husband (who I had barely met) were planning a trip to my new part of the world to try and fill the void.

They would be staying “just up the road” for five days, doing their independent thing, but were really looking forward to seeing where we had moved to and spending some quality time together.

The long weekend in June that began to take shape around these plans amounted to just about the most daunting thing I could imagine happening because this was no flying visit to a café; this was my friend and her husband landing on our doorstep for several days in a row, with the expectation that all four of us would spend a considerable amount of time together, and with very little of the respite I’ve come to rely on as a primary management tactic for chronic fatigue and symptom flares.

She’d heard so many sagas about how and why I needed to do this over the years and yet I still began to worry that the reality wouldn’t match her expectations of how we were going to spend our time together.

I had also not appreciated quite how much my social muscle had become deconditioned until this became a real prospect, but my fears were proportionate to how thoroughly I felt I had lost the knack of spending extended time with other people in the way broadly considered “normal”.

It had always been a struggle for me to be what I regard as “in each other’s pockets” with somebody, having preferred to remain somewhat aloof and retain a strong sense of space and autonomy (always, for instance, preferring to make my own accommodation arrangements rather than stay in somebody else’s home).

Now that I was a fully acknowledged neurodivergent, with my mask dropped somewhere over there on the floor, I genuinely had no idea how well this gathering could go, even with a friend I regarded as a stalwart through thick and thin.

Here was someone who knew me pretty darned well and largely understood my complicated health picture, also something of my neurology, and yet this was still going to be one heck of a trial by proximity. It was difficult to imagine it going smoothly with anybody, given my personal limitations around space, stamina and autonomy, because I know I have only become more entrenched in these preferences since realising my autism.

So, from the very first time the visit was proposed, my stomach was doing backflips because my social confidence has been at an all-time low since allowing my mask to drop, rather than the other way around. Yes, I feel more intact and more “me” for having let it go, but this new reality is seldom tested in the presence of other people and I remembered only too clearly how badly things could go when my mask slipped even slightly in the past.

How on earth could I show up authentically with this friend, without the convenient buffer that written communication provides, and still expect her to like me by the end of it? Over several days, I was surely going to slip up and do or say something that would be taken the wrong way, so would the friendship even survive it? Would she understand if I simply ran out of stamina and became semi-mute for a while, or needed to disappear into a quiet space and lie down at an inconvenient moment, or could no longer bring myself to fake joining in while the others were talking about things that left my mind wandering off. How would they cope if I needed to change our plans at the last minute because I had reached my sensory or social limit? Would my inevitable bluntness bring greater clarity or create terrible misunderstandings? There was such a lot to fear here and my mind was combing through all of it.

For decades I had fed and watered this friendship carefully through written messages back and forth, but to meet in person was to risk what I suspect many late-diagnosed, highly pattern-aware people fear when they first return to face-to-face social situations unmasked, which is that we will somehow ruin what matters to us; that the relationship will not sustain the shift that has taken place in us, including our diminishing ability to “put on” normality for even a moment or to perform it convincingly enough, even when under pressure.

Worse, I feared that I no longer had it in me to even try. My social stamina is so depleted now that a couple of hours of chit-chat with my sister can floor me for days; a family gathering can wipe the floor with me, and so I have learned to space my encounters with great care, allowing several days of run-up and recovery to buffer the devastation to my energy. This is how things are on a relatively good week, so imagine how they might be if I happened to be having a bad one when my friend arrived.

Of course, I overthought the whole thing to the nth degree for weeks beforehand, but “overthinking” is such an inadequate word for what was actually taking place. My whole nervous system was reverse engineering everything from this one potentially cataclysmic event and not always daring to see beyond it.

The difficulty was not simply that I felt anxious about seeing my friend. It was that every part of the visit opened onto several possible outcomes at once, all of which my mind felt obliged to anticipate. While one part of me was trying so hard to look forward to it and allow the weekend to unfold naturally, another was running parallel tracks of risk assessment: my body, my stamina, my need for solitude, the unpredictability of live conversation, the dropping of my mask, the chemistry between four people rather than two, the possibility of misunderstanding and, behind all of it, the fear that putting this friendship back into the physical world might destroy the very thing that distance had kept safe. I was expected to arrive naturally at an experience I had already lived through in dozens of imagined forms.

Being my last friendship standing in any functional sense, this one carried a weight that no ordinary social visit could have carried. My only others amounted to a handful of increasingly theoretical friendships with people I had not seen for years, some of whom repeatedly said they would pop round after we moved here only to find themselves busy after all, while I had also become increasingly adept at finding excuses of my own, mostly born out of fear of consequences or the dread of the social mask I had now discarded being required once again.

This was not because I felt no affection for them or had no desire for connection, but because I had grown steadily more averse to putting myself through encounters that seemed likely to require more masking, accommodation and social performance than I was any longer capable of sustaining. Between chronic illness, relocation, unmasking and the gradual retreat happening from both directions, there was no wider circle of functional friendship waiting behind this one if I somehow destroyed it.

That was why I was harbouring all the terror of imminent self-destruction and pre-grieving the loss of my singular friend before anything had even happened.

Yet this one friendship had survived all the storms of recent years, even though we had met only once in more than twenty years, on that brief London day trip. However, on that occasion, I cannot be certain, but I would gamble that I was still in fairly active masking mode, not in the sense that I was presenting a fiction but because she would have seen only what I had decided it was safe to show, being barely at the beginning, only a month or so in, of considering the possibility of my own neurodivergence and not yet perceiving the extent to which I had become accustomed to orchestrating my outer layers for safety.

I have travelled a very long way since then and my mask, well-oiled by one self-realisation after another in quick succession, has slip-slided its way all the way to the ground. Try as I might to tug it back on to get through a situation, I increasingly find that it no longer fits, or that it slips off so often that I might as well not bother pretending to wear it at all, which in one sense is a good thing but leaves me feeling as though I have no recourse to emergency protection when circumstances demand a more filtered version of who and what I am. Although I had been honest with my friend about my journey of self-discovery and the whole neurodivergent piece, it is one thing to hear about such changes in a correspondence form and quite another to witness them in the flesh.

But then I had no real way of evaluating how different I might now seem to the person she first met forty years ago.

We met at eighteen, two oddballs for slightly different reasons, living in the same halls of residence during our first year at university. She credits me with seeking her out and “taking her under my wing”, whereas I regarded her as a safe haven: someone inexplicably more familiar to me than anybody else I encountered during those first weeks of social mayhem as a rather singular individual used to spending most of my time alone doing my own things in my bedroom.

What we shared was a wicked sense of humour and a tendency to observe things closely and form our own opinions rather than follow the consensus. We were instantly comfortable with one another, content to body double or parallel play even before I knew the meaning of the terms, and there were absolutely no politics at play; we both said things just as they were and could trust one another utterly. Both of us had social limitations, sensitivities and various health quirks, which we could then relate to in each other. And our interests were oddly in sync for two people on completely different courses because we both had that propensity to make connections where others see none: she the scientist with an interest in the arts and me an artist with a deep love of science.

I know what you’re thinking but, no, she doesn’t identify as neurodivergent. However, all those rare qualities in common continued to shine on throughout all the years of correspondence, even as our paths diverged into very different careers and lifestyles.

But then, over the years, no other friendships came so easily or without a steep price to pay and my confidence began to wobble. Given my almost universal failure to keep other friendships going when they relied upon meeting socially, most dwindling away quietly, however much I invested in them, and some ending spectacularly with a door slam, I had long since convinced myself that this one survived expressly because we didn’t meet up. At the subliminal level, I think I must have come to believe at some point that the distance between us was not merely incidental to the survival of the friendship but the very thing protecting it.

It was also far too easy to assume that my earlier success in this friendship belonged to my more adeptly masked self; that everything I still hoped this old friendship could be was a figment of my hopeful imagination based upon a version of myself neither of us had seen for multiple decades and which I was no longer capable of producing, at least not in the flesh. To test the friendship by meeting again seemed to risk everything, such was my lack of confidence in myself, which I suspect was precisely why I had never again suggested it; especially not since diagnosis.

Had she not absolutely insisted they were coming for this forty-year milestone, like it or not, I would almost certainly have found some excuse and wriggled out of it, as I have become so adept at doing over the years when it comes to almost every most daunting social context that presents itself, not because I did not want to see her in this case but because I was afraid of almost everything about it. I was afraid that the physical and social demands would overwhelm me, afraid of how exposed I might feel in this post-masking era and afraid that the visit might cost me my one remaining friendship and leave me with nothing. There was an awful lot at stake.

I had become so convinced that written words were what had kept us together for decades, protecting me and keeping the treasured friendship safe. With written words, I could take my time, weighing every disclosure and every response, risk-assessing everything before it was released into the world and became available for misinterpretation. Engaging in person is quite different: immediate, live and far less strategised. I no longer have it in me to mask like that in person even if I want to; I simply don’t think quickly enough on my feet anymore, especially not with dysautonomia-related brain fog. This filled me with such trepidation that I was internally trembling, my heart rate sky-high, on the morning we first met. I had one genuine friendship left in the world and was about to expose it to what I had come to regard as the risk of me: unfiltered, physically unpredictable and chronically out of practice at making whatever I happen to be look socially palatable in the flesh.

For weeks, by that point, I had been fielding terrible uncertainty around the whole thing, and uncertainty is utterly intolerable for those of us whose minds attempt to construct safety through anticipation. For starters, I could not accurately predict how my body would present, whether it would vaguely play ball during their visit, whether I could manage four days of activity on the trot without my usual horizontal rest days on between (an entirely untested hypothesis since before Long Covid), or whether the social aspects would flow smoothly or become a car crash. For a week or so beforehand, they were predicting a heat wave over the visit (which, thankfully, did not materialise) which would have made even one upright outing unfeasible, let alone four.

In other words, I was under terrible internal pressure when any normal person might simply have been delighted at the prospect of spending several days with a dear old friend. This is the dichotomy, this is the kind of internal wrangling going on that I suspect most “normies” wouldn’t relate to at all and which would probably sound like we were neurotic or mad if we told them, so of course we don’t. In fact, my husband was under strict instructions not to give my anxiety away, under any circumstance, which then inevitably became its own version of masking (seems there is no getting away from it, one way or another, on the end).

This was despite my friend saying to me, firmly and repeatedly, that she did not want me to push through anything, that I was not to do more than I could manage, that there were no expectations, that I was to join in, or not, according to what my body allowed, and that everything on the agenda was entirely flexible. Honestly, how many friends, relatives or acquaintances have ever shown such understanding to me…not many, I can assure you…and yet the reassurance wasn’t landing, all I saw were reasons to fear.

And yet, once we had finally met and moved through the immediate bluster of slightly self-conscious pleasantries, everything quickly slipped back into place and things were very clearly fine between us. Within moments, we had dropped straight back into the way we had always been with each other, a comfortable groove that might have continued directly, without a missed beat, from forty years earlier, if I could believe in a non-linear version of time. It was quite remarkable how comfortable I felt within moments of sitting down for our first shared cup of tea in a café and how easily we returned to our old, easy way of being together in spite of all the intervening years.

What the weekend disproved was not only the idea that I had become incapable of socialising. It challenged the much more painful belief that this friendship had survived only because it had been protected from too much exposure to me: protected by distance, by writing, by long pauses and by the careful processing time of messages exchanged from separate rooms and separate lives. Meeting again did not reveal some less palatable version of me that had been safely hidden all these years because my friend recognised me immediately. More than that, she recognised the unmasked person I am becoming as the same essential person she had known at eighteen.

In fact, if there was one thing she kept repeating, while shaking her head in disbelief, it was that I had not changed a bit. Beneath everything that had happened to us both over the intervening decades, beneath all the adaptations, roles and outward layers acquired along the way, something authentic and immediately recognisable remained on both sides and it was as though the years simply melted away. We could pick up exactly where we had left off years before without having to reconstruct or perform the friendship back into existence.

This was such a reassurance to me, a truth I was ready to hear, because I strongly sense that the version of me who arrived at university was still largely untouched by the world and by the need to mask, having been raised in a highly unconventional and clearly neurodivergent family and having kept mostly to myself and a couple of close friends up to that point. The “me” my friend first met was the self I had been able to bring to her unmasked because, in a sea of less recognisable humans, she felt so safe and recognisable to me from the beginning.

The fact that she recognised me again, after all these years, told me that, however deeply I had buried that earlier version of myself beneath layers built up for survival, I had never truly lost that version of myself; which was more or less how I had already begun to feel in the year since my autism diagnosis, as though I had reverted to something more natural, more authentic and more characteristically me than anything I had become during the middle decades. I had been steadily unpeeling that onion, layer by layer, and increasingly feeling more like myself than I had in years, but to have this reflected back by someone who had known me at eighteen was another thing altogether.

To my friend, this recovered version of me was not strange or off-putting but profoundly familiar, and therein lay the validation: life had not done permanent damage to the part of me that remained solid, centred and trustworthy in the sense of being entirely authentic and natural, not to mention increasingly assured of its right to exist and take up space.

I had feared that unmasking had turned me into someone more difficult to know, whereas what she reflected back was that the person underneath was the person she had known all along.

Then there were my inevitable worries about our partners: would they like one another, would we each approve of the other’s choice, would there be awkwardness of the kind I have experienced before when the “other halves” come along and attempt to get on with nothing apparently in common except being married to two people who happen to be friends? My husband does not easily warm to people when there is no point of connection and is hopeless at disguising how he feels, whereas my mind wanted a hard-and-fast guarantee that the four of us would get along perfectly before I was willing to risk putting everybody in the same place.

I needn’t have worried. From the first moment, the four of us were entirely comfortable being who and how we are in our most relaxed state. We could be flippant and funny, then equally earnest a moment later; we could take risks in what we said without judgement waiting to catch us out or humiliate us, and the conversations only kept on getting better as we began sharing some of our special interests. It probably helped that both partners had heard so much about the other couple over the years, through the unbroken correspondence, that in some sense we already felt like we knew one another. Whatever it was, it turned out to be a first for me when all four of us clicked together so well, no apparent effort required.

Then I realised, with some sadness considering all the lost years, how this was what I had always been missing, when most people seem to have more than one set of friends they can be like this with yet, for me, it is the absolute rarity. This was what my heart always longed for, and went so bravely searching for, every time I made another daunting and yet usually quite futile venture “out there” in the hope of filling a lonely void. Not because I was incapable or somehow fatally flawed, it turned out, but because it always needed to be a particular calibre of friendship or it simply wouldn’t come about in the first place.

There was apparently a secret sauce to it, a perfect mixture of intelligence and curiosity, humour and irreverence, seriousness, directness and honesty, plus a shared disdain for most of what constitutes the usual social rituals. It required a level of vulnerability made possible by the absolute trust that the other party wasn’t getting any kicks out of point scoring. It had to provide the kind of relationship context where you felt you could take any amount of risk with literally any topic of interest, no matter how abstract its connection with the broader scheme, and yet never fear receiving blankness or humiliation in return but, rather, being met by a genuine openness to try on any new thought direction for size, no matter how obscure or niche.

We even discussed my health complexities in an amount of detail never once shared with anyone outside of a medical context, not even my closest family, because she kept on asking me direct questions on the topic where most people typically shut me down.

Time and again, even as recently as a year ago, I have put myself out there hoping beyond hope to nurture this kind of friendship with a new hopeful, only to meet something far more formulaic, guarded and defensive; more curated and performative; more founded upon competition, comparison and judgement. I have encountered relationships in which one deviation from a commonly held construct of “normal” is enough to place somebody in the wrong, or in which connection seems to rely upon scoring points and feeling better at the other’s expense, silently measuring each other against “success” benchmarks I neither relate to nor have any prospect of meeting. My increasing bewilderment turned into the belief this level of connection simply didn’t exist for me. That some cruel twist of genetics had deemed it out of my reach.

This time, I had it reflected back to me that not only was I valued exactly as I was, but that I remained fully intact as that version of myself; that all those years of heavy masking had not removed anything essential but had merely protected what was being held in reserve for safer circumstances. This was the validation I secretly craved as I approached the first anniversary of my autism diagnosis, which marked the beginning, in earnest, of peeling back all those layers. Yet I honestly thought I had no prospect of receiving it, telling myself my own self-validation had to be enough.

A year ago, when that last attempt at making a friend backfired after I showed up as myself, my first impulse was to retrieve the mask, but now I dare to believe I am far better without it. I’m prepared to allow that, when people do or do not accept the version of myself I bring out to meet them, this itself is useful information, not telling me I am broken but that the relationship itself does not fit.

We all deserve people in our lives who reflect us back to ourselves positively, shining our unfiltered qualities back at us, not with an air of “you need to change this”, but with the absolute acceptance they deserve. Outside my marriage, I had been missing this for so long that I had almost convinced myself I no longer needed it, but it turns out I did. Not because I was less whole without it but because the act of sharing ourselves safely with another person, and receiving them in return, magnifies who we are into something greater than the sum of our parts.

An unsafe-feeling world prevents many of us from doing this much of the time and I had convinced myself I could live without it, but am now very glad that I do not have to, at least not completely. The experience of last weekend has filled me up with something that is incredibly hard to describe but which leaves me feeling somehow warmer, safer, more supported by life itself.

I am never going to have a dozen friends and perhaps not even two or three whom I meet regularly, but having one person by whom I can feel fully seen, without being rejected or made wrong for being myself, truly makes all the difference. Breaking through the belief that our friendship survived only because we kept one another at arm’s length and rarely met in person has been such a relief and an affirmation.

The weekend was not always easy, my body being what it is, and a schedule of closely packed outings and meals was always going to take its toll. Yes, I should probably have done less, but the most revealing thing of all was that I did not want to miss out on any of it if I could possibly help it. We didn’t do it all, but we showed up or hosted once every day, for several hours, and the fact I even wanted to, in the end, says it all. The biggest proof of its success is that I haven’t been wiped out by post exertion malaise or a crash ever since, which is just so rare after any unusual exertion but, rather, feel more like I’ve received an energy tonic and a boost.

The other thing to mention is that the weekend was never once undermined by the daily reality of my limitations, which were simply absorbed into the flow of what we did without criticism, and without me being made to feel like an inconvenience to anybody.

On the final day, it was clear that I was a bit overtired, a bit overstimulated and even in a bit of a low in mood, as well as being low in energy, but that was partly because I was so well aware that we were about to part ways. The other couple were clearly getting overtired too, not to mention missing home comforts, so there were enough moments of relative conversation stall for my hypervigilant, perfectionist, people pleasing mind to pick up on and assume something was, not quite wrong exactly but, less right than it had been.

My nervous system began to default to its usual ways, in its tiredness, so I began to internally comb through conversations looking for mishaps, overthinking small changes in tone or delivery and hanging on to words that were said, or even not said. Yet, hovering above it all, I was still managing to be circumspect enough to recognise that most, if not all, of this paranoia was coming from me because old habits die hard, because I was running out of social stamina, and because I was reaching the part in the proceedings where analysis was inevitable because, in my head, that part always takes place at the very end.

At least my growing self-awareness around rejection sensitivity is beginning to change how I handle it when it arises, so I was able to keep nudging myself away from the most negative interpretations and towards far more likely ones, like tiredness and social threshold reached on all sides. This mattered tremendously because the risk assessment did not end when the visit proved successful; my mind still had one final opportunity to turn tiredness, altered tone and impending separation into evidence that something had gone wrong. The old machinery was still there, but for once I could see it operating without automatically believing everything it produced.

So I returned home at the end of the day tired out, yet with just enough wherewithal to interrupt that most brutal kind of post-event analysis that so often does most of the damage after an encounter has finished, like picking over bones until there’s nothing left at all. The weekend had been nothing like a failure, far from it, and there was enough evidence to the contrary for me to extinguish any small fires of doubt before they could take hold and rewrite the whole weekend into something it had never been.

Earlier this year, in that other post, I questioned whether I even needed friends, given my track record. Without them, life could potentially be less demanding, less painful, with far less likelihood of conflict or disappointment. This weekend had presented an alternate viewpoint, even at the same time as making it quite obvious it was all down to quality over quantity.

What I mean is I need friendships in which contact does not require self-erasure; friendships spacious enough to accommodate silence, illness, irregularity, autonomy and truth. I need the kind of friendship in which my limitations and struggles can enter the room without defining me (or being denied), and in which neither person is required to perform a more socially acceptable version of themselves in exchange for belonging. Anything less may cost me more than it gives, but something like this is profoundly life-affirming.

This friendship is one of those rare relationships that gives the rest of life greater dimension, not because it fills an empty space but because it allows something already living inside both people to become more fully expressed.

The great thing is that, successful though the weekend was, nothing fundamental has changed. We will not suddenly find ourselves beholden to pick up the phone (we never phone each other anyway), and we are not expecting increased intimacy or a new routine of demands. We will simply continue to go with the flow, talking via DMs when there’s something to say and being happy to occasionally meet when circumstances permit; perhaps slightly more often than once in twenty years but certainly not every year and never any pressure.

This is my kind of friendship and I now own it for what it is, not as a happy accident of fate but as something I somehow manifested to best suit myself, long before I even suspected what I was trying to accommodate. It’s like I sensed the “fit” of us instinctively, long before I realised I was looking.

What has changed is not the structure of the friendship but my belief about what has sustained it. I no longer believe it survived only because distance, writing and long intervals protected my friend from too much exposure to the reality of me. It survived because, underneath all the adaptations, interruptions and years apart, we still recognised one another.

Inside, I do somehow feel different, more whole than before, not because I was not whole to begin with but because life had shot me through with so many doubts about whether the self I had recovered through unmasking my neurodivergence was socially viable, loveable or even recognisable to anyone who had known me before. Those doubts have not been argued away through positive thinking but contradicted by lived evidence and the fact of being perceived, yet accepted, just as I am. The most life-affirming part was discovering that I did not have to perform our old friendship back into existence; I only had to turn up as myself.

I’ve called myself an artist for over twenty years, even labelled myself a professional in the sense that this, and only this, was the way I endeavoured to justify my existence and, in a small way, make some kind of living for a lot of years. Yet in spite of all those years of experience under my belt, I still carry so much imposter syndrome when I am around other artists. I’ve sold my work in galleries big and small, licensed it worldwide and yet, somehow, I still don’t believe I belong in that room. None of this made any sense until I started to unpick it and examine its parts through the eyes of neurodivergence.

Because at some level just below the surface I also don’t seem to believe I’m an actual adult, a proper person, even a legitimate human since I don’t overly identify with the race. All of that seems to stem from a lifetime of comparisons with other people through eyes that, for the most part, had no idea about neurodivergence, but which could sense all the profound differences between me and others, going back to my very earliest memories. So whether that’s all to do with how I regard myself, measuring myself against what’s “normal” or more to do with how I sense others judging me, I really don’t know…only that I don’t feel legit at any of it, not even at life itself, where responsible adulthood and income making has largely confounded me.

And I’m a walking wound of rejection sensitivity in this domain of art, perhaps more so than any other, because this is where I make myself most vulnerable, most exposed for all to see. Well, that and my writing, but that came along later and feels different somehow; less open to a world of comparisons that can be so strongly dictated by the latest fads and a whole lot of pretentiousness.

I see now that a big part of the problem is that I have been using what was meant to be self-regulating as currency and as some sort of token effort at “joining in” with what I don’t often understand; turning something inward and private into something outward-facing, a way of buying a place in a world where I have always felt like such a misfit. So, of course, it has left me feeling painfully exposed, as though I am constantly rolled onto my back, offering my underbelly to the world while hating every minute of it; really, wanting to stand up and walk off with my head in the air. But then, in a practical sense, it was the most obvious thing to offer forward, because art was my gift and it gained me, by and large, positive attention, and that wasn’t something small in a paradigm in which I was largely ignored or despised for no reason I could easily pinpoint until my diagnosis.

As most artists know, every artwork goes through its ugly stage, especially when it’s oil paints, which is what I primarily use. My difficulty is getting past that stage to something I am prepared to call finished. That last leg can take everything out of me and sometimes take months, even years on occasion. Until that twitch to keep on perfecting and perfecting again has run its course, I can never call a painting finished, even after it has been hung on the wall for months or kept in storage for years because just seeing it again could ignite some itch to tweak it some more. I’ve come to see this as an externalisation of how I continuously scrutinise and work on myself like I am some sort of self-improvement obsessive; when, really, it’s all been about survival and feeling better about myself in the poor-comparison situation called life that seldom puts me at an advantage. Perfectionism in art is like the manifest spotlit version of an underground trait that runs through the very core of me, directing that twitch at something visible, tangible, worthwhile…lest I continue turning it back on myself, which gets brutal and exhausting.

Because in art, no less than anything else in my life, I tend to think a task isn’t worth doing unless it is done to perfection. Yes, I see all too clearly how this belief system has been the scourge of a lifetime that has seen many burnouts. Ironic really, since I turned to art as a full-time occupation after I was forced to give up more conventional work due to the massive health burnout I went through in my late thirties. This was meant to be the rest, the letting go of that particular white knuckle ride but it only turned into the next one.

At that point, I hadn’t painted in years, had barely had anything I could call an art practice in decades, even though it was the thing I loved most growing up, yet paints came to rescue me exactly when I needed them most, just at the point I needed to find purpose and outlet. Something that was as much a case of mindfully slowing down and staying present as it was about anything to do with being gainfully productive, at least initially. In fact that whole productive thing had pushed my nose to the grindstone and worn me out by that point; this was supposed to be the antithesis, which it was, for a time.

The thing is, once my AuDHD traits got on board with it, I couldn’t just be a worthy amateur, I had to be an accomplished professional. The autistic part had to make a special focus of it, to hone and perfect for hours on end and the ADHD factor added excitability to it, that need to get way beyond the mediocre, to experiment and feel the thrill of constant variety or new mountains to climb. So I worked at it and worked at it; oh how I worked at it, driven and a little bit obsessive to the point that, when I wasn’t painting, I was staring at the day’s work contemplating what it would take to “fix it”, my husband always tracking my eyes to some corner of the room where the canvas was surreptitiously propped up in my peripheral, quite deliberately, so I could continue to noodle with the problem when I was ostensibly watching telly. Actually, so much of art was about problem solving; how to get from A to B, how to turn this unholy mess into something worth looking at. My mind loved it, while my nervous system relished the calming effects it had, the soothe and the stim, in equal proportions.

For a very brief time, I attended some workshops, did some group practice with life study but it was anathema for me. I was there for technique but found I didn’t acquire any I couldn’t have developed for myself, far quicker, at home with less chatter (almost nobody taught in oils anyway, and acrylics just weren’t the same). Teachers took an irrational dislike to me because I was so independent-minded and other attendees sidled off into their cliques; the exact same issues I’d had at school and the awkward masking part over coffee was exhausting. I didn’t really need the courses they ran, my biggest issue being that I lacked self-belief in what I already had (the one rare oils teacher I did a one-to-one with point blank said “go home and practice, you have the natural ability, all you need now is studio time”).

So pretty soon I gave up with all the art classes, using a new puppy that couldn’t be left alone for hours as my excuse to myself. With a huge sigh of relief, I began painting in earnest at home, intensely happy to be alone once more and no longer feeling quite so wrong for claiming this, like it suggested depression or anxiety, because I had tried the alternative and it hadn’t worked out or made me happier. My life pretty much turned into the daily school run, a dog walk with camera (hunting for inspiration) then painting all afternoon, and remained like that for years.

Even then, there was lingering guilt or concern around making this choice to be so solitary, until I eventually noticed something, which only fully crystallised in my mind once I finally accepted that I was AuDHD over ten years later, and it was this:

Neurotypicals always seem to think the secret sauce to anything’s success is getting together in groups, comparing, encouraging and collaborating whereas I don’t find that at all; rather, my secret ingredient of success is to go it alone.

For me, those things are interruption and diversion, they’re distraction from focus and dilution of aim. They take me off down avenues of interaction that become the thing rather than putting all my energy on the objective. They scatter my resolve and attention, undermining my confidence and turning the whole point into the collective experience instead of the singular focus, the resolution, I can bring to something on my own, which takes me holding all the threads at once, not handing them out for others to have a go.

And my experience is that these collaborations are never as truly encouraging as they say they will be. People, by and large, bring other agendas and they get hung-up on comparison and competition, their own insecurities. They say the opposite to what they’re thinking and they hold back important things if they feel, for whatever reason, that you don’t deserve the praise or can’t take the criticism. There are so many rivulets of sub-meaning to everything that the interaction takes all the energy of decipherment I have, whereas when I’m hyperfocused on something of my own, THAT is the thing receiving all my attention, the whole of my engagement, as it should be.

In any case, my mind works in spirals, not straight lines, so to ask for an opinion as though the solution is linear isn’t quite correct; it requires holding all the stages of the problem… its very beginning, its ending and all points in between… simultaneously. How could I ask someone else to interject something useful, and expect them to understand where I was headed or had come from, without first grasping the tensegrity that held it all together?

What’s the point of gathering all these half-baked opinions, just to seem collaborative? Why not wheel the finished product out into daylight when it’s finally ready to be seen and not before? This is how I’ve always tackled things since the earliest days…from handling the way I was being bullied to completing school projects, where I never once asked for assistance, always keeping everything close to my chest until I was done…to figuring out my post-divorce mess and navigating chronic health. Any time my situation has been prised out of me unresolved, ostensibly to help, it’s only ever got messier, more diffuse, less directed; that’s my honest experience. And yet there is always judgement in the air, implied criticism at this very idea of not needing or seeking other people’s input, like I am being accused of arrogance, control-freakishness or being antisocial; too full of myself to need the help.

So, in many ways, this lifestyle change represented a shedding of things I now realised that I didn’t need and going back to roughly where I had started before the ways of the world interfered. When I was naturally self-contained and just got on with the absorption of what I was happily doing, as was the case when I was a young enough child to claim this behaviour for myself and not question it. Before it was made wrong by the opinions of others.

To get the whole picture of what art has always done for me, why some part of me reached back in time for it, to steady me after my burnout, I need to rewind the clock back to childhood, when sitting contentedly on my own churning out drawings was something I did long before I could read. From about two or three onwards, I would repeatedly draw the same subject - birds - like I was on a production line, always highly engaged in the task, completely lost in my own little world, making soothing guttural noises in my throat in sync with my hand movements. I’m told this by family members, and I also remember the feeling of it, can actually see myself, my knees and hands, as I sat on the little stool at the low table we had, clutching my colours and working through reams of draughtsman’s paper that dad brought home for me as half-used scraps from his office. I can drop straight back into that feeling of absorption, of contentment, of calm; it’s where I still go every time I do art. From the beginning, I was using it to self-regulate, keeping myself steady in a household that was frequently too stimulating, too emotional, too noisy but this took me out of it and I was perfectly self-contained.

Yet, already, I was learning that art drew positive attention, that it offered me a kind of autonomy that wasn’t otherwise easily come by in our family, that kind of “leave her alone, she’s being creative” mindset that bought me quiet time and aloofness in a highly chaotic domestic environment that could otherwise sweep me up on its tide. It was the start of art turning into something else, something less simply regulatory; more protective and a kind of mask, if you will, because others became distracted by it enough to leave me be and not probe any deeper. The act of it was revered enough that others would step around me in a way they wouldn’t have done if I had been absorbed in anything else.

So not only would it buy me hours of alone time at home but it buffered me at school, where I won favour and accolades through being able to do it, even managed to hide myself under that air of creative eccentricity that surrounds artistic traits, especially as a teenager. There was a sort of respect and mystique afforded me through my artistic gift that none of my academic efforts ever earned me, no matter how hard I tried to succeed at them; it even won the respect of one or two people that might have otherwise bullied me. This was yet another layer, an add-on to the original purpose of the artistic pursuit; almost like a shield or a territory marker, gaining me a little more personal room for manoeuvre into which other people would seldom deign to trespass. It also bought me quiet time in the art room at lunchtimes and breaks. It gave me the so-called cool points of a highly decorated art portfolio that people admired when I carried around with me, when everything else about me was shunned as boring or weird.

So perhaps no surprise that I found myself turning back to it when my adult world fell apart at the end of my fourth decade, at which point the world had become much too much for me to handle and too encroaching to be sustainable; I felt like I had no room left to even breathe. So, in spite of my health cascade, I was desperate to reclaim some personal space again, even from family life; and art provided that bubble, a kind of oxygen tent. Especially during the many hours of alone-time during the day when I no longer worked and might otherwise have just sat there picking over my many failings at adult life, worrying about the way my so-called attempt at a career had imploded because I apparently didn’t have the stamina for it.

Instead, I was right back where I started, immediately engrossed in it, surrendered to the permission it gave me to express myself on a surface, even to make sounds or gestures that nobody else could hear or judge because I was on my own most of the time so I could do whatever came naturally, letting go of all those tightly braced muscles that had apparently kept every nerve and impulse under close control since people had first started scrutinising my behaviours, years before. So art became meditation, vagal stim, emotional outlet, the metaphorical stand-in for problems I was wrestling with, the channel for answers I didn’t even know I was seeking until the paintings themselves brought them to the surface, and it kept other people at bay. In short, it was everything that I needed right then and more.

So now I see how the same protective quality applied to art all these years later as before because I was still at the mercy of other people’s opinions, especially as I remained unemployed because of the shambles of my health. Because, by then, I had begun painting on a regular basis, certainly five days a week, and was taking it so seriously that I was able to fend off at least some of the inevitable criticism from certain people, spoken or implied, about not returning to work when, in their eyes, I looked perfectly fit and well, though I really wasn’t.

Again, the mystique and air of eccentricity that hangs around the idea of being an artist buffered me from too much scrutiny, which gave me space and put me at liberty to begin to unmask my neurodivergence long before I even knew that was what I was doing. It normalised spending so many hours alone, withdrawn and hyperfocused in a way that might otherwise have been labelled dysfunctional because I was, in my own way, “working” so it was allowed and tolerated. It bought me so much freedom to be myself again, like the intervening years had never happened, and if I dressed a bit more eccentrically, if I seemed a little bit more oddball than before in ways they couldn’t quite fathom, being an artist helped to explain or excuse so much of it.

In other words, spending copious amounts of time on my own, unfettered and, in fact, encouraging myself to be expressive and experimental, inevitably liberated me to be just as expressive and experimental with myself. It rapidly turned into a time of metamorphosis; a kind of accelerated personal growth (really, an unpeeling of layers) that came out of a disintegration process (my burnout, my poor health) that ended up birthing a completely different version of myself to the one who had gone out to earn a conventional crust. It was the delayed version of me that should always have been allowed to emerge but which, instead of birthing in the usual way, had been interrupted by life and become so caught up in a sticky web of other people’s expectations and demands that, for a long while there, I completely lost myself.

The beauty of it was that I was still being productive but it was far less about making money now, which did happen but not enough to live off; more about producing myself and some way I could possibly hope to continue existing. And yes, I appreciate I only ever had the luxury of this by virtue of having a highly supportive and encouraging partner behind me, struggle though we did to make ends meet at times. It justified me just enough to keep the world off my back while I got to grips with chronic health and finding myself underneath all the morass that life had heaped on top of me, and that was the first real break I ever had.

Just so long as I seemed driven, productive and reasonably successful at it, like I was always just on the verge of getting somewhere, people generally left me alone and counted me out of those otherwise inevitable pissing in the snow contests of who was doing what or earning how much in their midlife careers. My “career” was just weird enough that they knew not to ask. So people learned to just step around me and turn up at my exhibition openings, pretending to know what I was all about but never really quite getting it, yet somehow knowing not to even try. In some small way, I had started externalising my neurodivergence without even knowing it.

Which then made it all the more essential that I not just be some mediocre hobbyist; I had to be good and I had to have provable success and/or income to garner such respect and to be allowed to continue at it. And so, without even formulating this thought out loud, I somehow knew I had to throw myself into it, hook line and sinker, setting up my studio hours like a nine-to-five job and sometimes evenings and weekends, when there was time pressure, almost to the brink of another burnout.

In fact, I eventually reached a point, after a few years of this, when I realised all the joy had been quietly sucked out of this thing I was supposedly doing for pleasure, turning it into the next heavy rock tied to my back; a thing of burden, sometimes dread and stress when I just needed that long-awaited reprieve and the permission to “be” without the constant need to self-justify through busyness. At some point it had turned into yet another job, a pressure, a demand, which was its death knell given demand avoidance is one of my strongest traits and because, by this point, I realised there was no point to anything without the joy to fuel it.

That was my first wobble with the art, somewhere around ten years ago after a decade of doing it; and, being something held much closer to my heart, this time, than my much loathed corporate job, much more of an existential crisis than when I gave that up. I had come to identify with art; it was part of me and I was the artist so to lose my footing with that was to loose my footing with my very sense of self and it felt deeply destabilising, coming as it did right on top of perimenopause turning into actual menopause and the not-so-subtle worsening of my health that followed.

A very big reason for this latest burnout was the continually self-applied pressure of perfectionism. I couldn’t just keep doing what was working so well, rinse and repeat; I had to keep evolving in leaps of accomplishment, refining my craft, inventing new mountains to climb, pushing myself out there more, trying new things such as the digital art spin-off I went off into, or designing fabrics.

I was only ever as good as my latest achievement and none of it, in my mind, ever accumulated; like I had to start from scratch proving myself…and surviving the odds…every time. I couldn’t even begin to understand this need to keep whittling the stick of achievement to an even finer point until I first came to see my own neurodivergence and the odds that had always been stacked against me. This was literally me proving my own point; the point of my existence, over and over again, to survive the persistent sense that I was, in some way I couldn’t yet fathom, less-worthy than everyone else.

I see the link from neurodivergence to chronic perfectionism much more clearly now, though I didn’t for a lot of years. For a long time I regarded perfectionism as a necessary flaw, part and parcel of my driven nature, not as a wound or a protective device. But then I don’t think everyone else turns one thing after another into a mission to prove and protect themselves from negative scrutiny. For me, every effort, from passing exams to making a real go of my various attempted careers (and there have been quite a few), became a kind of survival project; another “thing” turned into self-justification in the eyes of the world, undertaken as though my very life depended on it.

It was around then, as the cracks began to form in the old way of perceiving myself, that I utterly refused to do commission work or to work to anyone else’s timetables or demands, but even the fact of my own internalised pressures and perfectionism began to torture me. Hell, even a new delivery of art materials could provoke demand avoidance because the very fact of them being there called me out if I didn’t use them; and so the lifelong trend of accumulating new materials, only to abandon them in shame when the urge passed me by, became the latest rub as I ventured into new territories of creativity. And this happened more and more as the sense of having painted it all out of myself, of having run out of inspiration, came flooding in with the generalised burnout feelings that were back again. I was ticking the criteria box exactly; things that once brought me intense joy no longer were and I was left bereft.

At first, it simply looked like I was taking a detour when I turned to other mediums but then it slowly became apparent that I hadn’t lifted a brush in months turning into years. I had a swan song of producing new work during the first year of lockdown, painting like a fury in my garden, relishing just how peaceful my noisy urban neighbourhood had become, even the Heathrow flightpath above my house gone suddenly quiet, allowing me to pretend I was in some rural idyl set-up with my easel under my tree. A year later, even this had fizzled out and I finally surrendered to reading books…any book I fancied, trashy novels, favourites from childhood…just anything at all except paint. It was the first time I ever gave myself absolute permission to stop; and it had taken me fifteen years since my last paid employment!

So just as suddenly as I had first taken up painting with a vengeance when everything else fell apart, I had now ceased doing any at all and didn’t take it up again for two or three years of dry spell, still spluttering on and off ever since. It was my everything and suddenly it had all but dropped off the scene in that way others read as uncommitted or mercurial when yet another ADHD fixation flies out the window. It really shows that I was down to questioning everything about myself by this point, right down to the bare bones of how I had spent nearly all my time for years, thinking this was me from now on; that I had found myself, defined myself at last… and yet even this primary thing had suddenly gone and left me standing there back at ground zero.

This new apparently under-motivated period, more like an identity crisis than an actual loss of drive, happened to coincide (quite unsurprisingly, in hindsight) with the point when I finally came to accept my dual neurodivergence, like I had finally caught sight of myself in the peripheral mirror. I’d been calling myself autistic since 2019 but ADHD took far longer to land because I was resisting the truth of it. Suddenly I was forced to see it there so I eventually looked it straight in the eyes and didn’t look away again. That’s when everything began to fall into place. Instead of art being my number one fixation, neurodivergence now took that place and it consumed my every waking hour; it was almost like I had no time for anything else.

Because I was starting to question absolutely everything I was about during this phase, “artist” got caught in the crossfire. I wasn’t even sure if I had natural talent any more, or if my output was the inevitable product of years of obsessive hyperfocus combined with very close attention to detail; a sort of ritual performed so repeatedly I became inevitably adept at it.

The thing is, surprisingly successful and enjoyable as those first few years had been, it had never really come easy to me, had always felt just as uphill as every other “career” iteration, and I was never quite convinced of my own abilities. It mattered not how many people bought or admired my work; when I was put side by side with other artists, I still felt like they were the real ones and I was the fraud. I was always expecting to be exposed one day as the wannabe that I was; a case of more luck than talent, more clever technique than giftedness. As the whole persona I had presented to the world for decades came under close scrutiny, this also got picked apart, because wasn’t this thing I had applied myself to just another attempt to normalise; to present a palatable demeanour to the world, something to curry favour and hide behind? Wasn’t the art I made like some sort of peace offering; here, look what I made, now please don’t hurt me? When it came down to it, this was the very same tactic I’d used at school to keep bullies off my back, bartering for every inch of space it afforded me and the very right to exist in it.

Once I had this niggle in my mind, I really don’t know what it would have taken to make me see otherwise because it simply lodged there in my thoughts. None of my past achievements would do it. Not the fact of making the shortlist of the Royal Institute of Oil Painters exhibition at the Mall Gallery (which, of course, might have been followed by more if only I hadn’t registered it as failure and profound rejection sensitivity when my work wasn’t hung after all, and so never submitted work again as a matter of self-protection). Not the fact of seeing my artwork featured as a three-quarter page in the Vogue magazine culture section, in books and campaigns, and on posters and cards worldwide. Not all those artworks shipped overseas to collectors on three continents, nor a clutch of awards won online. Not the array of respectable galleries accepting my work, nor the agent approaching me, the world’s biggest licensing agency inviting me. Not the fact I had taught myself to do all this from scratch at the same time as tackling burnout, chronic pain and an unresolved overlap of several complex health issues; none of it would convince me.

But then I hear this so much about those of us who are neurodivergent…that none of what we offer ever feels like it’s quite enough or really real. Perhaps it’s something in the reactions of other people when they actually get to meet us, like the profile doesn’t quite fit their expectations. Perhaps it’s because everything we achieve feels triply hard-won and not quite sustainable, no matter how well earned. Perhaps we are so accustomed to feeling like we are presenting a facsimile of ourselves to the world just in order to survive that we start to doubt the whole construct of our outward-projecting persona; as though we are fake through and through, held together by such flimsy scaffolding that one modest wind could blow us right over.

Perhaps our belief in our ability to take part in the world, or to have access to the same currency of good fortune that other people so readily transact in, is so insecure that we keep on expecting the bank of life to foreclose and to be stripped of everything we have achieved, no matter how hard we worked for it. Perhaps it’s this sense that we were never really invited to the party; that we gatecrashed and are about to get found out and shown to the door.

Whatever it was, I had this constant unnerved feeling that I was getting by on a wing and a prayer, that one day people would wake up and tell me to my face that I was rubbish, that my art was rejected and despised. That whole rejection-sensitive layer of me felt exposed every single time my work was on display, be it in a gallery or online, always expecting the rudeness, the negativity that never came. Every silence that came back to me, when social media does that thing where it feels like you must have been muted because nobody apparently saw your post, I would crumple in the lingering belief that all my worst fears were obviously true and I was better walking away from it all without making a fuss.

And then, conversely, given my lack of self-belief, I would get really bitter (then hate myself for it) when I saw artists whose work I honestly couldn’t fathom doing really well because they were so much better at social media and putting themselves out there; two things I absolutely loathed, long before I realised the neurodivergent reasons why. I carried such fury that so much of art success was about charisma and marketing, knowing the right people and having the kind of personality to front the whole thing with confidence, self-promoting and communicating in ways that were way outside my abilities. I hated all the artifice around it, the expected bubbly persona I was meant to project as though I came as a package with my output rather than it speaking for itself…or rather, for me, so I didn’t have to.

So in fact I was almost fully reliant on other people, on galleries noticing me, other people doing that intermediary work that I wasn’t capable of doing or, when I did, I was forced straight back into a degree of masking that killed my creativity stone dead. For instance, the run up to an exhibition could involve so much distractionary marketing and people engagement that I would be drained dry and thus unable to rouse a single creative urge for weeks on end. These were two completely different parts of my brain and the use of one would preclude the other; I certainly couldn’t just timetable my day into different parts and switch between the two.

People would constantly suggest that I build more presence, do demonstrations, run campaigns, make videos and I would recoil with such a fervour that I would naturally interpret it as the cowardice of the untalented; a fear of being exposed as the fraud that I was, not what it really was; a lack of basic capacity to take on those very things because they don’t suit me or my neurodivergent communication preferences.

Really, and in typical hyperfocused autistic fashion, all I ever wanted was to focus on the act of making art, that being the whole point of it. Interruptions could be fatal to my flow but they were coming thick and fast now; until I pulled right back from my involvement in “things” and then, for a short time, I had the art back on track but nowhere to show it. As began happening, anyway, when a few of my most comfortable galleries began closing down in what felt like a running theme of business failures, just before covid (which brought its own interruption), a change I found very hard to deal with. The pointlessness of it all was beginning to stare me in the face. There’s no denying, it’s been years now since I was last in a gallery; partly because they don’t exist in the same way and partly because I just don’t want to have to deal with them anymore.

It was funny how I became an exhibiting artist in the first place, because it almost didn’t happen at all. Shortly after finishing my last job twenty years ago, when my health was a mess, I had a session of hypnosis in which I was asked to envision my ideal day. Out of nowhere, I began describing a day in which I went to a nearby favourite art gallery and dropped off a load of artworks for an exhibition before going off to spend the afternoon walking my dog in the woods and fields for hours, completely at liberty to do as I pleased. There were no other people in this imagining, apart from a highly delighted gallery owner, just me fully engaged in this life of quiet absorption and unpressured accomplishment.

This hypnotic daydream came completely from left field given I had been working in a corporate desk job until very recently and, before that, done very little more than dabble with arts and crafts for nigh-on two decades. At the time, I wasn’t working at all and was trying to gain a foothold in my health at the same time as trying to work out what I could manage to do when it finally came to working again. I had barely started dabbling with my paints and my output was still very amateur at best.

Yet quite spookily, eighteen months later, by which time I had produced a lot more paintings since I still wasn’t working, I happened to be in that very art gallery with my then seven-year-old daughter. Hearing our chatter about the exhibition, the gallery owner chipped in and my daughter piped up, “Mummy paints,” to which he said quick as a flash, “Really, do you have a website I can look at?” Before I knew it, he was flipping through my extremely rudimentary online portfolio making appreciative noises and offering me a spot in the next exhibition alongside some quite impressive established artists. Without that leg-up, which was my entry into a long series of exhibitions there and around the south east and London, I doubt very much I would have ever shown anyone my art, being so poor at self-promotion and completely lacking in self-belief as I was. If it hadn’t been for the hypnotherapy session, I suspect I would have gone home and talked myself straight out of it as nonsense but there was something compelling about the way it felt like I had witnessed a premonition coming true; a signpost on the path, exactly when I was most unsure about the future direction of my life, dreading going back to some awful office job.

However, it was far from all roses dealing with gallery owners and not all of them were a great personality match for my sensitive system. When another gallery told me point blank that they only wanted paintings of Venice from now on, since my one Venetian painting had recently turned into a bidding war between two buyers, sending me home with a carload of new pieces they wouldn’t even look at because they didn’t fit the criteria, I just sat in my car and wept with the sheer hurt and frustration of it. I had spent months getting this body of work together for them, at their request, only to be rejected on a stupid condition they had completely failed to mention until this point. They exercised their right to be picky and prescriptive with no thought whatsoever for the labour and commitment that had gone into this latest batch of work, for which I now had to find another gallery at short notice.

Most of all, I was spitting with fury that they were trying so hard to typecast me already, to clip my creative wings for their own commercial agenda. This wasn’t why I had turned to art and having to deal with this was no different really than dealing with a corporate boss when it came down to it, especially when I could see how shortsighted they were being yet they wouldn’t listen to my views, as had ever been the case. The dogged pursuit of money at all costs is something that clouds so many people’s judgement and here it was again, cutting me off without giving me a real opportunity to prove myself as the all-rounder I was capable of being.

I was so hurt, so rejection sensitive after this encounter that I wouldn’t go near that gallery ever again so that was a case of one more being struck off the list; yes, it had happened before because, once my sense of justice is affronted, there is literally no going back. It was one of those absolute autistic door-slams I now recognise for what they were and, to be honest, that was when I first began recoiling from the whole abhorrent gallery scene. So much of it was about who you knew and having the right connections, the best name drops in terms of other galleries you had been in before or where you had trained (when I hadn’t trained anywhere). It was about being placed in unspoken hierarchies with other artists who had a bigger foot in the door and not always about talent. It was always about what they believed would go for the most money. One prestigious gallery that I was thrilled to have an audience with told me they loved my unique style and were prepared to overlook my lack of an art school if I could only scale my work up from bijoux canvases that were part of their charm to the size of a warehouse conversion wall so they could sell them for more (I flatly refused; they were missing the whole point). It was always about how much of a production line you were prepared to be, churning out more or less the same things repeatedly, never mind following your own inspiration or direction of personal growth.

In this one area of life, I was finally daring to unmask for once and lead with my authenticity, the outpourings of my heart, but it wasn’t enough, at least not for the kind of people who were in the art business to make a killing.

On the other hand, the people that actually engaged with my work often connected with it so deeply that I have a whole load of precious anecdotes: The woman who came into the gallery week after week to stare at the painting she was saving up for, laying down minuscule instalments until she was able to take it home. The couple who tracked me down to purchase a particular painting they wanted to be the first thing to hang on their wall when they relocated to a farmhouse in France, taking this precious piece of English countryside with them. The painting put at the top of a wedding wish-list, purchased by means of a whip-round between work colleagues because they knew it would be far more treasured than some domestic appliance. Another woman who was gutted when she found out the painting she’d fallen in love with had already been sold to a medical practice, and how she broke down in tears of joy when I managed to get it back for her, through a very diplomatically handled artwork swop with the other buyer. The person who told me she would never look at trees quite the same way again because I had made her really see them for the first time. The pair that spent two years doing detective work to track me down after falling in love with my painting at an open exhibition and who persuaded me to sell it, even when I’d intended to keep it for myself, because they were so overjoyed at finding it at last, having kept a wall completely blank waiting to find it because nothing else would do. More than one medical setting invested in my art because they considered it comforting and grounding for patients to have around.

So though I find communication and relationships pretty difficult, having a whole lifetime of experiences behind me to demonstrate the fact, I was somehow managing to communicate with all these people, forming a kind of relationship with them, a quiet network of positive connection and a way of saying things that really mattered to me, all without the need for words.

After a lifetime of struggling to make sustainable connections with other people, art had turned into this very small way of feeling connected in such a way that I could actually cope with it, one which didn’t encroach on my very strong need for autonomy and privacy and which felt wholly authentic to me. It didn’t rely on me having to mask or rehearse, to present any particular version of myself, edited and anxious, but allowed me to go direct to the heart of the matter, “speaking” in such a way that required no further explanation, no making of a case nor the defending of a position. I communicated through the feelings my paintings invoked, and when the right person to own a particular painting came along I could always tell because of the way they responded to it; which made anonymous selling via intermediaries much harder for me to reconcile, even though it was mostly necessary.

So in its way, art felt like an outreach project, a way of communicating in a paradigm where connecting with others has seldom been easy for me and in a world that would otherwise have seen me withdraw completely, especially now I had no other reason to engage with it, not even parenting to keep me attached, in a very lose way, to community now my daughter had grown up. It kept me exercising that connection muscle long after it might have otherwise withered away; whether that’s for good or for bad (the outcome has been very mixed; certainly not cut and dried) but at least it was communication I could mostly tolerate.

Perhaps inevitably, my art also took on something of a mask-like quality; being something that suggested I was far more confident and engaged with the world than I really was. The very outward urge itself (to show the art) was a pretence, something I always had to push myself to do. It forced me out of the shadows into something more visible, much more perceived, which was both necessary and excruciating in equal measure. But at least this was a kind of masking I could just about sustain without too much collateral; as long as I kept it real between me and my buyers; which inevitably directed me away from galleries to making direct sales through other means, be that art trails or online, each of which came with their pitfalls (more on those below) but it felt more authentic selling face-to-face and that mattered. It still required so much masking and this became the trade-off, the part I could have done without and yet, without it, my art would have no point and would have remained unseen in a cupboard.

There was a time I really did much better with the exhibiting side of things and that was because an equally quiet and sensitive, completely unpretentious, gallery owner took me under her wing, putting me in her regular shows, which meant all I had to do was turn up a couple of times a year for the openings. And in fact, in that setting, I would feel alright sitting there next to my artworks talking about my process for a couple of hours to anyone that was interested. Looking back, it’s now so obvious that the reason why is that I was being given permission, for once, to monologue freely about my favourite topic; how brilliant, being so used to people stifling yawns or shutting me down. So this was sustainable for a few years, until the gallery was forced out of business by rising commercial rates and that was the sorry end of that, again.

There were many other, far more formal, prosecco-fuelled, openings where I felt completely out of my depth listening to all the typical pretentiousness going on around me, and I would often find myself becoming too ill to attend because I was so wracked with the absolute dread of them.

Then at one lucky point I was approached to begin licensing my work, which I continue to do, and that was such a break because it involves zero public engagements, marketing or other demands. I simply upload my new work and it’s put out there where I can make some income from it; which is as close to the perfect autistic art outlet as I have ever found.

I also tried to do the whole art guild thing but it turned into rejection sensitivity soup. As ever with these “club” type formats, I clearly didn’t fit in, not helped by the fact I technically lived outside the geographical region and didn’t already know anybody, but then they didn’t have to accept my application and I tried my best to show up. I think because my work was considered to be an asset to the group, I was simply tolerated as a member but nobody knew what to say to me or, indeed, me to them and there was no genuine enjoyment in it. My main objective for suffering it was to take part in the open studios once a year, which involved sharing a space with someone else as I didn’t have the right facilities (bringing its own social challenges).

The few times I volunteered to help out, which would mean partnering with some random other person to man the exhibition space, these interactions would be so awkward and strained for the whole session that we would both be watching the clock. I never could make small talk and even the common topic of art wouldn’t be enough to oil the wheels of these things, most of the time. And I never joined in with any of the workshops. Everybody else wanted to turn art into a social medium, something you did while you chatted which, for me, was the very antithesis of what art was about. A couple of times, I managed to set up a one-to-one demo with someone if I wanted to acquire a new skill but social awkwardness would always dominate the day.

Then there was the time I dropped off my contribution for the summer opening and, in spite of this being one of the most popular pieces I had ever shown online, getting snapped up pretty quickly by a collector, they actually turned it down as not suitable to hang, something that barely ever happened to anyone. You can imagine the RSD that swept in when I turned up for the opening with my family, only to find it was being stored in the broom cupboard; not least because I sensed some sort of politics had been at play here and that I had been dropped for subtle reasons beyond my grasp. I may have been wrong but it felt like somebody had been making a point because of the way I had walked off with the “public’s favourite” award the year before, conducted by secret ballot, in spite of being overlooked for all the official prizes.

There was always some secret sauce that I felt I was missing when it came to getting along with the mentality of the committee there and I eventually resigned because the effort outweighed the benefits. I always felt like I was hovering on the fringes because I wasn’t one of the social in-group, which really should have had no bearing at all but it clearly did. Akin to most social settings I have encountered in my life, the whole thing felt like a game that I simply didn’t know the rules to or have the stamina to learn how to play. I couldn’t be bothered with it any more and put it behind me after five years of giving it some real effort.

Another time I somehow acquired an agent who was initially really excited about my work, rubbing his hands together gleefully as he took in all my latest pieces. He was clearly of the opinion that I was about to become his latest milk cow, as all of his carefully selected artists tended to be, churning out pieces that were in such high demand that they generally sold even before they were put up on the wall. And yet, in no time at all, following one brief round of the Affordable Art Fair in London, he unceremoniously dropped me, which I think was due to the fact that I lacked charisma when it came to schmoozing with potential buyers. I have always lacked performative gloss and, by this stage, the mask I had polished up just-about well enough for getting by in my working life, dealing with clients, had started to tarnish and I just couldn’t bear to put it on any more.

As for internet selling, I found that the most deadening and disheartening kind of transaction of all and, after a few soulless years of tolerating it, completely gave it up. Treating my art as a commodity, a kind of glorified soft furnishing that people sent back when it didn’t quite match their sofa, shipping it to who knows where, only to be handled in whatever way people saw fit and very possibly returned damaged, was not the experience I wanted it to be and left me feeling hollow.

So there has always been a tension between why I do art and what it is essentially “for”; never quite resolving itself even after all of these years. Since painting has become much more challenging due to the worsening state of my health, especially since Long Covid, I have really started to question the why of it; especially when the labour outweighs the benefits. I already have enough artworks to keep my walls filled for the rest of my days so I really don’t need to produce more for any other reason than because it makes me happy to do it. That part has been under question since it began to equate with much more pain and significant logistical difficulties sustaining the very postures required to engage with it.

If not to market it or even show off and seek compliments, if I hate all the trappings of putting it out into the public domain, why do I need to continue stuffing my storage spaces with ever more canvases that don’t ever see light of day? Even when I do sell a few artworks, as I did last year when I opened up my own studio, in our new location, for the first time (a trial in making the exhibition side of things as real and close to home as it could possibly be, to see if that helped), part of me still feels very unsettled about the experience. It’s an odd thing having dozens of strangers pour into my house hour after hour like its a public domain, some barely saying a single word to me like I am not even there, though to be fair others were very supportive and friendly (and yes, the masking part was intense and felt performative, even during the good parts). That part of me questions the whole point, if it is not entirely joyful and leaves me feeling depleted or even a little bit off.

Ironically, I was persuaded to sell two pieces at that opening that were marked as not for sale because the person in question made their mind up that they really wanted them and didn’t want to take no for an answer. I look back and ask myself what was that all about: why did I capitulate so easily, was I tempted by the money, bowled over by their compliments? The answer is no, I simply fell back into people-pleasing mode, proving to be completely inept at saying no lest I offend these people, dreading them disliking me or labelling me difficult, rude or whatever if I didn’t concede. I was in the full throes of trying to settle into my new village, where everybody knows everybody else, and allowed myself to get swept away in the moment; defaulting to that same tactic I used for trying to get people to like me and leave me alone during my schooldays; saying yes to things when I actually meant maybe or no.

With such mixed feelings, I then handed over the two pieces of art I had previously decided to hold onto and cherish because of the particular memories they held, and then kicked myself hard afterwards. Not because they were such a massive loss; I’ve got over my reservations now, but because of the way I caved in, a pure demonstration of a lifetime’s worth of bad habits just as I was starting to notice them.

In fact, it’s quite astonishing to me that I am still so driven by that first impulse to say yes and agree to things, whether I want to or not, as some sort of safety mechanism learned over many decades of trying so hard not to rock the boat in case I am the first one to fall in. More recently, I have been working so much harder at saying “let me think about it and get back to you” instead of defaulting to the kind of knee-jerk yeses that always give part of myself away for free.

If I struggle this much to say goodbye to the pieces I produce (and I always have to some degree), is there also any point in being a commercial artist? Because when I produce art, it is an absolute labour of love taking many weeks, many emotions, a whole lengthy process of deep inner exploration that the surface level so often belies, and no price tag nor gushing compliment can reflect what that then means to me. A painting is almost like a diary of my internal landscape at the time I was working on it; so there is always an awkward mismatch with the very idea of “price”.

Especially when so many people equate worth with inches of canvas, not what has gone into it. Whereas, for me, it can feel like selling a family member, giving away a part of myself, a very limb, when I send off some artwork to hang in someone else’s domain. The more I allow myself to own that visiting other people’s spaces is a struggle for me (which it really is), the more I realise that I also struggle with the concept of sending my art out there to hang on some alien wall.

I’ve scrutinised this quite a lot and it turns out there is a visceral part to selling art, whereby I can feel quite profoundly connected to it, in a way that goes beyond object personification (a common autistic trait I have in spadeloads), because I actually birthed it. So I can feel fairly uncomfortable or unnerved by the sense that this fragment of myself has now been removed to a new location inside somebody else’s energy field. It’s like there is some sort of quantum connection established with those other people, which can feel perfectly benign when the piece finds its way to exactly the right new owner, as per some of my anecdotes. But when it is some random anonymous transaction, or someone I’m not really sure about, it can feel really “off” and leave my energy feeling scattered, like I am being thinly spread across all these energetic places I don’t necessarily choose to be linked to.

So there is a bit of a u-turn occurring inside of me right now and it’s pointing my art practice right back at myself as its entire objective, not outwards towards other people as it was for so long. I’m not feeling compelled to share it at all right now, not even on social media (and perhaps especially not there…) and I’m increasingly drawn to taking all pressure off the need for perfection and accomplishment. I’m exploring completely different mediums that can be used in positions I can actually sustain, using coloured pencils or pens on my lap for instance, and I’m looking to establish a more or less daily drawing habit that is all about showing up for a few minutes like a wellbeing practice, not performing. Because if I can only get back the regular habit of doing art just for me, I think it can truly get back to being one of the most regulating things in my life, as it ought to be.

This all has some very clear parallels with the way I have turned my whole focus of life around to face what suits and serves me best these last few months since diagnosis; towards what pertains to my health and happiness, what helps me stay present and engaged with my own existence, what puts me at the very centre of the experience. No longer so scattered and forever preoccupied with pleasing others or seeming a particular way so that they judge me kindly, performing some version of so-called normality, I have redistributed my focus in so many ways and am starting to feel so much better for it.

In short, I would like to say that I am going back to doing it all just for me, only I never really have done it just for myself until now, at least not since those very first efforts I got lost in as a pre-school child. I’m finally doing what I should have done twenty years ago after my breakdown: experimenting, playing, exploring myself through art and not getting all distracted by what other people might be thinking about what I am doing or how much they value it. What a long time to have been taken off on some sort of detour; one that began with the very first compliment and from the very first time those early drawings were used to curry favour with family members or at school, like some sort of barter system designed to acquire for myself the quieter life that I most needed in order to thrive, and which should have been mine for the taking; no trade-off required.

I also believe that, by getting back to art’s original purpose, I can get out of this art-rut.

In a timely way, I happened upon an art mentorship the other day and the woman in this marketing video was trying to tell me that the universal reason most artists stall is because they lack community and connection, that they need people they can pool their ideas with and with whom they can regularly discuss their sticking points.

I could see how this would be a popularly received idea and, at the same time, knew at once that this is not my reality. In fact that, for me, the very opposite is true; that what I most need is to pull back and remove other people from the equation entirely, so that I can get on with exploring what I want to do next myself without that constant need to translate what I am all about, to make it legible, to seek reassurance and proof that I am worthy or doing it right. I want none of that; having had my absolute fill of pursuing it, albeit it mostly subconsciously, for years. And I’ve had my limit of making myself wrong for not craving all that community and collaboration we are constantly told that we need, for not wanting to be a joiner-in-er. What I really want right now is to deep-dive the process on my own and not give a damn what anyone else thinks.

And while I can just about glean the benefit of watching some videos, learning some tips, getting some prompts when ideas have got stuck, as soon as it turns into zoom calls, gatherings and forums, sharing work-in-progress with the group, programs, physical meet-ups and workshops I’m out of there, as demand avoidant as it gets, my nervous system on red alert. One good thing came out of considering the mentorship idea…I knew immediately I could do all this for myself; in fact, it only made me more determined to do it my own way.

So I’ve gone back to basics and started drawing again, at two levels to keep my variable mind satisfied: the slow, concentrated version that is coloured pencils, and the immediate, in-the-moment capture of quick sketching. It’s already providing benefits, filling the gaping hole left where my regular painting practice used to be.

The proof is that I’m waking with that gentle fizz in the pit of the stomach again at the prospect of getting back to what I left off yesterday. With the slower pieces, that feeling comes from holding all the potential of where I can envision the piece going next, but which hasn’t yet been realised, cradling it in my mind until I can get it there. With the quick ones, it’s the excited feeling of unlimitedness that comes from knowing I could draw anything I want today, whatever catches my eye, no limits.

I’m slowing right down, pacing myself, absorbed, even if only for fifteen minutes or an hour, in a way that spills over the edges and calms my whole day down. That interruption to my thoughts is gold.

And it is getting me through the kind of heat wave that normally floors me. Somehow, by holding just enough tension to sit up (legs raised, of course) and wield a pencil, dysautonomia doesn’t feel so utter, so all-encompassing, and I’m finding myself more resilient through this intense weather phase than expected. Keeping my nervous system in check, by tempering the adrenaline I’ve come to rely too heavily on, just to get me moving, is a big part of it. So much of that adrenaline response is anticipatory, and living with chronic health can turn anticipation into a catch-22 when you start to anticipate symptoms. Yet the more I relax back into the art process, the less often those anticipatory responses get fired, which seems to have a knock-on effect, dialling down the dysautonomia before it has quite so many chances to arise. In a week when I would normally be struggling with the most severe kind of POTS, I feel more stable than I’ve felt for two summers and some of that is increased sodium that my body can rely on now I’m dosing properly; but some of it is the art.

Painting used to do this for me; correction, it did when chronic pain was my biggest problem and what I needed most was absorption and distraction, but not once POTS and post-exertional fatigue came along. The all-or-nothing of what it takes to set up oils, to uproot to a different room, sit at an easel, use big arm movements and stretch to work the whole canvas; the non-negotiable of cleaning up just as I get most tired; the sensory assault of it, even with low-aroma, non-toxic materials as far as possible, as I’ve used for years, was keeping me away from my practice just when I needed it most. I would come back from doing it floored, the equivalent of attempting a trip out or exercise, meaning I would have to clear any other demands to leave myself enough capacity for it (which meant doing art at the expense of having a life). Then, the perfectionism involved in oils, the constant striving, the pressure I couldn’t seem to help putting myself under to be doing it for a commercial reason (otherwise why else, when I don’t require more artworks to find space for), added stress to what should otherwise be enjoyable.

This low key lap-tray version feels much more sustainable; therefore, by adapting why and how I do it, I’ve made art possible again. Which isn’t to say never again to oils but that I’ve found a way that reflects the truth that the only viable reason for doing art all is that I’m doing it for myself; as should also apply to everything else in my life. Just like art taught me steadiness and self-containment were what I most needed in the very beginning, and slowing down and staying present was what I most needed when I burned out, when I stop to listen to art instead of pushing it hard, it always has useful things to tell me about where I currently am.

Fifty-odd years of motivating myself using outside pressures, survival imperatives, the desire to please, to be well received and be approved of are a lot to get over and it’s going to take some effort to get back into doing art for art’s sake but I’m already on my way. It’s my chance to let the rest of it drop by the wayside, including the perfectionism. And it’s going to keep taking this little-and-often approach, never forcing it, following the joy impulses and allowing the curiosity to arise, making it more about the process than the end result.

It’s going to have to get a lot like the way I have been learning to reframe just about everything in my life over recent months; peeling back the layers to reveal what is really, authentically, about me and not some outer layer worn to appease others or to make myself seem a certain way designed to keep me “normal” and safe. I’ve already done such a lot of that inner work when it comes to altering my mindset around relationships and how I spend my daily life. Bringing art into the reframe allows me to reclaim what has always been my best-ever regulatory tool and place it right back at the centre of my world, where it belongs.

In this heatwave, I find myself reframing periods of my life when I really struggled with dysautonomia and yet didn’t see that was what I was really dealing with, at all…not for another few decades.

When I think of travel in particular, the signs are all there, especially when the travel was in summer heat. Part of that, in hindsight, was the sensory overload of being AuDHD, which I really didn’t see for what it was for another forty or fifty years. Part of the picture, though, was always clearly dysautonomic in nature. In fact, the more I come to know my dysautonomia, the more I realise it is, in many ways, an inbuilt part of my neurodivergent framework: a kind of discombobulation with the environment and an inability to appropriately adapt to it the way other people do. In other words, not so much this sudden onset later-life thing going wrong, although, admittedly, menopause and then Covid made it oh-so much worse as far as milestones went.

For instance, something about today’s heat took me back to my first proper post-graduation job, when I was commuting on a slow train that stopped at all the stations, taking me to a street-facing office on a very busy west London high street, opposite a tube station, where potential clients randomly came in to talk to us at our desks all day long. The office was small, hot and incredibly cramped, also full of smoke because this was back in the days when you could still smoke in an office, bizarre as that now is to think about (very early 1990s) and even I smoked back then, as a stim and stress-management thing.

So the air would hang thick with smoke all day long, ashtrays would reek on our desks, and when I say we all did it, that was pretty much everyone without exception, including my boss, who was the yellow-skinned, chain-smoking type of her era. So I would stand on this consistently overcrowded commuter train, cheek to jowl with all the other passengers, for an hour both ways, then sit in this smoky heat-swamp of an office dealing with high pressure all day long, since the job was a base-rate thing only made barely viable by commissions earned. Then you were always being judged by others listening in to your conversations and how you handled things, pulled aside for impromptu critiques when you didn’t handle things so well, so pressure was always there. I would get home so late I pretty much fell into bed with my excuse for an evening meal, then get up to do it all again the next day.

So is it any wonder I experienced my first health crash that summer, age just barely 21? But then I look back at the weird symptoms I was experiencing and so much of it was dysautonomic. I was having regular dizzy spells, almost complete memory blackouts and swooning fits, brain freeze, times I could hardly string a sentence. I was waking up so tired I could hardly get out of bed at times. I was reacting to foods I normally ate, and I was getting heart palpitations, numb fingers, vision issues (so many of these things are like a past era echo of what I deal with in summer now with orthostatic hypotension and spikes of POTS).

My bewildered GP signed it all off as some kind of glandular-type episode and I had about 6 or 8 weeks off work, which ultimately lost me my job, but all that standing on the train, the stress, and not being able to take a proper breath all day long; the barely long-enough lunch breaks when I would almost invariably collapse on my back in the park and just lie there staring up at the sky, desperate to be horizontal; all of that across a period of intense summer heatwave, where the pavements almost seemed to be cracking from the intensity. No wonder, I now think to myself.

The clues were all there when I went on a camping trip with my sister and her boyfriend when I was sixteen, right before starting my A levels. Having not been on holiday with my parents since I was five, I think my sister took pity on me and invited me to Dorset that July like some sort of sisterly duty. But again, the weather was so hot, I was cramped up in the back of a car with all the luggage and sleeping on just a groundsheet with asthmatic-level allergies that put me on inhalers when I got back home. We were living off sandwich-spread sandwiches and crisps or beans on toast, barely sustenance, when I was used to Mum’s steadying cooking at home.

Then I was being offered pints of Dorset scrumpy when we were out, underage though I was, and all that alcohol, the apple mould, the whole histamine bomb of it, was further addling my senses, worsening my nighttime breathing issues, leaving me all the dizzier, with headaches and stomach pains. It wasn’t even relaxed, because they were arguing the whole time like an old married couple, the boyfriend frequently storming off and threatening to leave us there; and I absorbed all this atmosphere of stress like I was witnessing a marriage breakdown from the back of the car. I became progressively more dizzy and disoriented as the days went by, and eventually felt so unwell, so out of my body at times, that they decided to curtail the holiday and take me back home.

I recall feeling like such a let-down at the time, like I was failing at one of the fundamentals of being an adult, which is to travel and see new things at every opportunity, to go on adventures in summer time like everyone else and yet I seemed to struggle at every turn. I cursed my parents for not acclimatising me to being away from home, but it was so much more than just that. My heart was mostly in it…my body never was. And so often it was the summer heat that set the scene, like the singular factor that sent the whole sorry cascade of not coping into action once it reached a certain threshold.

Another classic anecdote is the time I went to Portugal with my boyfriend who, keen to save money, had insisted we just take a couple of tents and sort out accommodation when we got there. Of course, it was August in a popular seaside resort and, having spent the first night sleeping on an air-conditioned seat at the airport, we walked out onto the tarmac the next day to at last fully appreciate the solid wall of humidity and blasting 40 degrees heat that was waiting to greet us as our new normal.

We’d as yet failed to locate a campsite with any spaces via the tourist information desk we had queued long and hard for that morning, and all we had was a scrappy piece of paper with a few tentative possibilities and an approximate direction. After hours of walking along heat-shimmering roads that everyone else had the sense to avoid unless in a car, we ended up sleeping on the side of such a road, which turned out to be right next to a mud swamp, evidenced by the amount of angry mosquito bites I’d acquired by morning (there’s that other dysautonomic thing; the way every insect bite turns into a septic mess every holiday).

After even more hours of walking carrying luggage that was almost bigger than me, with just one stop off at a bar for a bottle of water, we eventually found a space on a campsite with dysentery-scented toilets and constant heat bearing down on our tent roof all day long due to the complete lack of tree cover. There was barely any food in the campsite shop and the queue for bread each morning involved an hour-long wait from first crack of light; guess who was expected to do this.

So I memorably spent the long fortnight until our return flight in a physical health crisis which, once again, had all the hallmarks of not being able to temperature-regulate: of almost blacking out with the heat, of not tolerating being on my feet or, when I forced it, crashing into days of exhaustion; and of allergies and the kind of stomach responses that felt like they might eventually hospitalise me. I went home uttering the words “never again”, and the whole sorry thing left such a scar on my travel aspirations. Even Interrail, bumming around Europe with a friend in the August heat five years earlier, had not seemed quite as bad as this…and that was pretty awful at times.

The thing is, I never could seem to cope with the normal amounts of exertion involved in these things, not even when the weather was more manageable. Walking hills in Wales and Derbyshire left me with sprains that had me labelled as some sort of Pathetic Annie by my travelling companions and, try as I might to sustain both my own normal body weight and the extra load of carrying luggage, I would end up feeling buckled and weak, almost blacked out from the effort. I would get so fatigued I could barely make decisions or take care of myself (I once memorably got stuck in a loo at Brecon Beacons; something similar happened to me on my recent train from Scotland when POTS was most active on the journey home because I couldn’t figure out how the door mechanism worked). I would almost turn into a different person because the amount of toll it took just dealing with travel logistics would render me monosyllabic, anxious, shutdown and utterly overwhelmed.

It took many years and the complete reframing that came with realising I have the non-negotiable kind of hypermobility that comes with Ehlers-Danlos combined with being AuDHD for me to see all those things in any kind of favourable light. That’s decades of self-berating, of feeling like the failure, the let-down, the one everyone else always wanted to leave at home because I would surely ruin all their fun and turn the whole thing into a medical saga.

What I didn’t know was that I simply couldn’t help it. That I wasn’t designed for the same rough and tumble that other people considered a rite of passage in their young adulthood. That, for me, I would have been better off waiting until more security and better income allowed me to travel in relative comfort, perhaps at more temperate times of the year, and with far less luggage to personally carry.

Even later, when travel became more comfortable and less improvised, the same pattern did not entirely disappear. Better accommodation, more stabilising food and proper beds helped, but they did not remove the underlying truth that heat, exertion, transit, vibration, disrupted sleep and sensory novelty were always asking more of my body than they seemed to ask of other people.

So it’s been part of the reframe for me to go back through some of these memories and wounds and to see them in their proper light; to see myself as someone who gave so many things their best shot and who was not just sitting at home, but really trying to have these adventures anyway, even when the track record was never exactly encouraging. Someone who took the jobs that involved awkward travel, and there were a few, involving trains, long drives and cycling in all weather, like I was, dare I say, an ordinary person, not someone for whom temperature, weather systems and stress combined can orchestrate adverse outcomes beyond most people’s imagining, simply because my system couldn’t cope with the extremes or the variables.

I see that now, and I send myself love and appreciation for having been through it all and survived it to this point where I can clearly spot the patterns.

So I have just got back from the holiday I have been alluding to for some time in my posts, though it was not simply a holiday; more of a plunge into the unknown or a giant leap of faith. I wanted it so badly, but I was also afraid of what it might prove: whether it might mark the end, rather than a beginning, of the kind of trips I love to make and which we had hoped to do more of now my husband has retired.

I had not truly had what I would call a holiday for around four years due to moving house and the state of my health, and certainly not since Long Covid considerably worsened my Ehlers-Danlos-related symptoms. This trip to Scotland, to add further unknowns, was by train, a mode of transport I had not attempted for three years. The last time was a much shorter journey (just half an hour’s duration) and it really didn’t go well due to the vibration and overcrowding. Having that as my most recent benchmark was not all that encouraging.

This time there was also the added challenge of carrying all the various paraphernalia I need for comfort and accommodation in a single suitcase and a couple of bags, none of which I can take any responsibility for myself, turning my poor husband into a packhorse, rather than throwing everything into the car and hoping for the best.

The anticipated benefit, apart from saving my husband the considerable drive, was that a train would allow me to move around and stretch out my legs during the journey in a way that a car simply doesn’t. I’ve found car journeys increasingly difficult over recent years, always having to break them into chunks of no more than an hour and a half, and often arriving in such a state that I am “done” before the holiday even begins. On at least one occasion, that meant cancelling and returning home within a couple of days, followed by a lengthy recovery.

So I was cautiously optimistic that this way might offer me some benefit, even with all the added unknowns. We even splashed out on first class, not because we have money to burn (far from it), but because the premium seemed likely to translate into a make-or-break difference in terms of increased comfort, less crowding and better soundproofing. I wanted to test something I was almost afraid to ask myself: were my days of holidaying really over, or had I simply not yet found the terms on which they could still happen?

So, as is my way, I strategised the hell out of this holiday for months, making the first tentative bookings back in January, long before my wintertime physical state was easily allowing me to visualise going anywhere at all, let alone three hundred miles away. Throughout all the health dips, I continued preparing for it on faith, making contact with every stop-off to make sure I would be accommodated or, if not, changing plans right up to the last minute (as happened with the hotel after the first one left me unconvinced) rather than taking the risk. In fact this second hotel was much nearer to the station and upgraded me to a suite for free, just to provide me with a guaranteed lift to the room, so my instinct to keep querying things paid off.

That is how the trip came to have its shape: three nights in Edinburgh, five days further up the coast using a comfortable well-researched rental property as a base, then back to Edinburgh for one night before the train home. While it looked, on paper, like a holiday it was, in reality, an exercise in logistics, pacing, sensory prediction and risk management.

I’ve been gently logging my responses to this trip as it went along, partly to gather insight into how my neurotype responds to all the upheaval and excitement of a holiday now that I am truly paying attention since diagnosis last year. But what became clear almost immediately was that there was no neat way to separate the autistic or ADHD parts from the hypermobile, dysautonomic, mast-cell-reactive body carrying them around.

Neurodivergence is a body type, not just a brain type; that is my long experience and I’m increasingly hearing the sentiment echoed in the kind of podcasts and newsletters I subscribe to. There is no single aspect of how my brain receives the challenges of travel that is not interwoven with how my body receives them too. Sensory load becomes physical load. Novelty becomes dopamine. Dopamine masks fatigue. Vibration becomes pain. Routine becomes regulation. A taxi can be an accommodation and a trigger within the same hour. None of this can be disentangled, nor am I attempting to disentangle it as I describe my way through my experiences on this trip.

This holiday became, almost accidentally, a live experiment in all of that.

Take, for instance, the sensory factors that cropped up around things we did or didn’t do. One thing we could have done, and which I suspect many people on the same itinerary would have done as a matter of course, was take a boat trip to a nearby island. But I knew without hesitation that I would not have been able to manage this.

Neither my body laxity, my dysautonomia nor my autistic sensibilities could have coped with the movement of the boat, or being cooped up with up to 100 other passengers on a tightly packed deck for several hours while trying to pass this off as enjoyment. As prized as photos of puffins and seals would have been to me, this was a no-brainer and easily avoided as soon as I really felt into it and got real with myself.

The train, however, was unavoidable. Until I stepped on board, it remained the unknown equation of the whole trip yet, without it, we had no other way of getting there. You can imagine the trepidation I was feeling on that first morning, optimistic though I was trying so hard to be.

Thankfully, both the first-class compartment and the Passenger Assist service we booked at both ends of the journey really paid off (even though the arrival part of the booking fell off the system and I had to accost someone for help in the middle of a POTS wobble). The train was considerably roomier, smoother, less brittle and vibratory than I have found previous train journeys to be. I was able to sink back in the chair quite comfortably and luxuriate in the view of the east coast speeding past the window with none of the jolts, turns or sudden accelerations of a car journey. Just as well, given that this one was over three hours long. Compared to gritting my teeth through hours of uncomfortable car travel counting the minutes until we arrived, I was snapping away at the views with my camera and calmly enjoying the ride.

Having someone show up to carry our luggage to the train, and then, when I had that severe POTS wobble at the other end, simply plonk me in a wheelchair and transport me almost to the threshold of the hotel, were two of the main factors that genuinely made the trip possible on that first day. Without them, I don’t think I would have managed at all but, instead, I felt borderline triumphant at how well it had all gone by that first evening in Edinburgh. My spirits began to lift; perhaps my long-distance travelling days weren’t over after all.

I was using my stick and boldly displaying my Invisible Disabilities badge throughout all of this, along with a Sunflower badge on my lapel and an hEDS lanyard hanging off my bag, no matter what people made of this over-kill or how cringy my husband’s bright red carer lanyard may have looked. I was determined not to hide them away any longer, wanting to make use of them to their maximum capacity: to gain a little attention, to make my needs more legible, or simply to state something without words when we stepped into yet another taxi for what any “normal” person might judge to be a ridiculously short journey.

We booked those taxis on the local app whenever we needed to save my spoons for the actual sightseeing, or to get back whenever I abruptly crashed, which seemed to happen at around 3pm like clockwork every day.

The first time it happened, we still hesitated and talked momentarily about taking a gentle stroll back to the hotel, until I woke up to the ableism fuelling this ridiculous thought and ordered a cab anyway. Those crucial few minutes of either sitting or lying down versus trying to push through when blood is pooling to feet and dizziness has taken over can really make the difference in the aftermath. I barely made it to a bench in the shade to wait it out, but we were back at the hotel ten minutes later and there was no lasting damage done.

After that, there was no more hesitation around my “three-o’clocksies”. In fact, we began planning our days around them, tilting most of the activity towards the pre-lunch window and slowly winding down once lunch was out of the way. The way I would seem fine and then suddenly wasn’t, with a POTS flare so non-negotiable there was no getting around it with a sip of salt water, became a matter of course; a daily event as clockwork as the sun going down (hours before it did). And when I am honest with myself, I have a similar crash every day at home year-round but, of course, it is far less impactful when I’m already on or near my sofa. I was trussed up to the nines with compression socks (until my neuropathy could bear them no longer), body binder, the works and yet this wobble was a daily event so we just dealt with it as a matter of fact.

And of course every lunch spot was researched and prebooked so we had comfortable seats and minimal surprises awaiting us, often with a pre-arranged menu tweak in my case. In fact, the nearby restaurant to the second phase of the holiday had constructed an entire personal menu for me before we even set off, a degree of accommodation made possible because I put the effort into making contact weeks in advance.

However, one thing I noticed was how I still leaned into my physical disabilities, not my neurodivergent ones, in situations where I had to explain my needs more fully. This feels like a sign that I still dread so many negative conclusions being drawn, or incomprehension being the outcome, if I mention AuDHD. Unmasking my autism feels especially vulnerable when I am already under the additional strain of a holiday situation and so in need of being taken seriously.

I was already conscious of a certain amount of eye-rolling in the hotel when I kept having to stress certain dietary avoidances, and again in the other restaurant, which was otherwise really good at accommodating me, but where the owner couldn’t help responding to one of my dietary rules with, “Well, we all have to eat things that aren’t good for us sometimes, don’t we?” in a way that felt completely minimising of the complex health picture he had already been pre-warned about in my emails.

Another dietary observation was that some pre-booked eating spots were quietly dropped from the schedule, not because they were awful, as I never got to find out, but because it became quickly obvious that I preferred routine over variety.

For the first time ever in a holiday context, instead of talking myself out of the impulse to repeat what was known and familiar, I allowed myself to follow it. In fact I repeated the same two restaurants several times, even ordering exactly the same meal more than once. I doubt very much I would have let myself do that before my autism assessment but just doing so without quibble this time felt deeply self-accommodating.

What this did was inject a strong flavour of routine and predictability into the holiday, which I found self-regulating and also energy-saving. Those meals became far less exerting or stressful than anything requiring me to get used to a new setting or wait with bated breath to find out whether the restaurant in question could really cater for me. The one risk was on my birthday, a seafood restaurant I really wanted to go to, but I needn’t have worried; they turned out to be one of the most easily adaptable places we went to, cooking my exact meal from scratch.

This is where the holiday started to teach me something I should probably have known already but which knowledge of autism is finally enabling me to own up to: repetition is not failure and it is not a lack of adventurousness. For a nervous system already spending lavishly on novelty, travel, sensory overwhelm, alien beds, unpredictable weather, food risk and social exposure, repetition and routine can be the very things that make exploration and adventure possible.

When it came to choosing activities, the first rule was to avoid the kind of exertion I simply can’t sustain these days, particularly hills and long flights of steps where there is no lift or other alternative. Edinburgh Castle was dropped without ceremony: too many unknowns, too many compromises in what we could or couldn’t hope to see, cobbled paving at the top of a hill I was unlikely to tackle, even if I managed to get the over-subscribed shuttle lift to the ticket point.

With queues and crowds added to the picture, the reality of it was not all that appealing and I was happy to let it go. In fact, as is characteristic of me but became more obvious this time around, I grew quite demand avoidant around the prescribed tourist activities. Being told I “should” see something is often its own kiss of death.

Instead, I built a gentler itinerary around several hidden gardens and beautiful closes off the Royal Mile, taking a steady pace and getting dropped at the far end rather than using up resources I don’t have just to arrive at the beginning. Some of those gems turned out to be the very highlights of our trip; one of the closes turned out to be so astonishingly tranquil and photogenic, a hidden three-part garden tucked away behind city walls, that we didn’t really want to walk away from it. We also took a taxi to beautiful Dean Village from where we managed the gentle stroll on the flat along the river Leith to Stockbridge where a cosy lunch was already waiting for us, then another taxi back. So, as it turned out, avoiding the crowds sent us on the path towards something much closer to the heart and far more memorable.

And all of this without overexerting myself and with the expectation of taking our time or sitting down for a while on well-positioned benches to admire the view actively built into the kind of activity rather than running counter to it. Yes of course, there were physical consequences. I was increasing my upright time per day by a factor of three or four times more than average, including far more time sitting up at a table for three meals a day instead of propped on the sofa more often than not as I am at home, and all of this created the kind of downward pressure and gravity-driven pain in torso, legs and feet that perhaps only another hypermobile person would truly understand. None of it was unbearable or felt damaging as such, though it made those long lying down completely flat rests of my afternoons absolutely essential.

It was interesting to notice how I had built the most structured schedule imaginable before leaving home, as I am wont to do and am well renowned for in our family, but that once we were there I was far more prepared than usual to let things go, turn them around, or drop them entirely if they no longer felt right.

At ground level, it felt as though my autism had been given the task of making all the arrangements, doing the necessary research and building the scaffolding, while my ADHD sensibilities, my strong gut feelings and creative spontaneity, were allowed to play with the schedule once we were inside it.

When the way I had put the week together ceased to feel right in the second place, I shuffled days around and dropped some of the more obvious places as not really my cup of tea. What emerged felt much more like balanced cooperation between the autistic and ADHD components of my personality. The net result was a good flow of activity that suited us well without becoming too rigid or dogmatic and with a far better rhythm of busier days alternating with quieter and slower paced ones, even though we never took a day off as such. It took arriving on the holiday and feeling into the lay of the land for me to get this rhythm just right but I got there in the end through close collaboration of both the research-obsessed aspect of my brain and the highly intuitive factor.

On no single day did we exceed three to four hours of activity, including stops for food and rest, unless it was a travel day. By keeping to this rule of thumb, I never truly overdid it while we were away and I was guaranteed a long, low-sensory, horizontal recovery window every afternoon, whether I slept for a while or not. Mostly I did, even though the double aspect room I was doing this in, once we left the hotel, offered the most stunning views of the sparkling sea on both sides and was frequently lit up with radiant sunshine for most of the day. It was so stunning, such balm to the soul, that I began to feel myself unclench from the very first moment we arrived there, feeling right at home and so grateful I had mustered the courage to make the trip at all. Even in the night when I couldn’t sleep, I would wander through the living room and watch the moonlight sending patterns across the water or watch the silhouette of some boat out at sea as the first red glow began to appear on the horizon.

In effect, I enjoyed the best of both worlds there; a base with plenty of things going on that we could visit with minimal effort but also a carefully chosen home-from-home offering somewhere I actually wanted to spend some quiet time as an opportunity, not some sort of penance for over-exertion when the time came to rest. These scheduled afternoon pauses then refreshed me enough for the evening meal out and even an early concert one evening, meaning I was able to get back early enough to wind down for bed.

I also counted sensory load as part of the energy expenditure bucket. If lunch was somewhere busy, if there had been a lot of transportation, if I had needed earplugs or had been exposed to the wind, all of this counted, not just as sensory load but as physical expenditure.

The one struggle was that the sleeping arrangements drove me slightly mad wherever I was, as is often the case away from home. I loathe the feeling of synthetic bedding anywhere near me, not just because it makes me so hot and uncomfortable but because it can trigger full-blown dysautonomic meltdown in the night. In the rental, I eventually found cotton sheets and a wool blanket to replace the stifling duvet, but I was still struggling nightly. At the end, when I removed the bedding, I discovered I had been sleeping on a thick nylon waterproof layer just underneath the sheet.

Why nobody else seems to feel these things, or is bothered by them, remains perplexing to me. To my sensibilities it was torture, and I spent many hot, restless nights tossing and turning as a result. Some sensory factors can be adapted around. Bedding, especially when travelling by train and unable to bring the more natural alternatives I would usually pack in the car, is much harder and I knew it would be a risk, given the impact poor sleep can have on symptom load in the day.

Part of the sensory adaptation I was able to achieve came from taking seriously something I have been experiencing versions of for decades, getting worse as I age, but which I had never before managed to name clearly.

One sleepless morning, I happened to be listening to a podcast where the interviewer was talking to Dr Jessica Eccles, a specialist in the overlap between hypermobility and neurodivergence (and if you are not familiar with her work, I highly recommend looking into it as her interviews are widely available through her Linktree under the moniker Bendy Brain; finding her was a monumental breakthrough in my own self-understanding a few years back). Through that chance encounter with the interview, I was able to shine a spotlight on some fairly key symptoms of mine that I had not even had language for until I heard her discussing cold-induced and vibration-induced urticaria related to hypermobility and MCAS.

For me, this has often shown up as a particular kind of burning pain that does not behave like ordinary neuralgia, fibromyalgia or cold sensitivity. Wind across the face, neck, ears or scalp can set off a whole-body reaction in my case, with no evident redness by and large and yet the sensation of it can be so intense as to be almost unbearable, gnawing or like I’ve taken an acid bath. Vibration from cars, trains, electrical appliances, bad suspension or temporary road surfaces can leave me feeling as though my nerves have been roused to a crescendo of pain that is the equivalent of a high-pitched scream. Cold water on my hands scrubbing mushrooms or peeling potatoes can be agonising and result in the task being abandoned. Draughts around my neck and head can trigger hot burning occipital welts or burning scalp, even neuralgic pain that has me holding my head in my hands sobbing, as though the body interprets the stimulus as a wholesale systemic threat and is raising the alarm. Wind on my face can leave the sensation of severe sunburn and internal heat for hours on end after the event.

Once I had this frame, memories started rearranging themselves. Agonies running anything at all under a cold tap. Air-conditioning blasts in shops and theatres causing disproportionate crashes later in the day. Ear cartilage turning red, hot and painful overnight. Eyes burning and gritty or vision turning into a temporary snowstorm in cooler outdoor conditions, rendering me suddenly almost blind and forcing me to wear sunglasses outdoors, even when the sun doesn’t shine. Even the strange temperature-transition headaches that happen when I move between cold and warmth or when I fail to take off a hat quickly enough on going indoors, which can be utterly excruciating, began to make more sense as part of the same pattern.

It also threw light on some of the more baffling vibration, friction or stretching kind of triggers: why I was forced to give up on more than one vagal stimulating device as utterly intolerable and flare inducing, why electric toothbrushes became impossible years ago for much the same reason and why I haven’t been able to go near a vacuum cleaner or hand-held mixer in years. Why even routine hygienist appointments, when I still had them, could trigger disproportionate and lasting flares, including lips swelling up like a boxing injury from cold water jets and vibrating instruments. Why clapping long ago turned into something I had to learn to mime or forego because it could trigger such a severe flare-up. Why the stretching and teasing of massage can generate an exaggerated backlash. Why cycling became increasingly intolerable and led to a four month physical crash last time I tried. How certain car journeys can generate a metallic taste in the mouth, which is another known effect. Even pressure from clothing can induce these effects, hinting at some of the many issues I have had trying to come to terms with compression garments and why I can’t stand being constricted (I have a custom-made orthotic for hEDS that cost a fortune which I can’t bear to have on).

Some of the most reported effects of vibratory urticaria, apart from itching, swelling and flushing, are sudden fatigue, blurry vision and intense headaches and I have experienced them all in spades. Cold urticaria from chilly conditions, wind, cold water immersion, sudden changes in temperature or touching cold objects can trigger faintness, dizziness, low blood pressure, a racing heart, or a shock, even swelling, all of which I have experienced so many times over the years and often drawn far more fearful conclusions than it being a histamine response.

For years, I had these reactions filed under the vague heading of “my body being particularly odd again” but hearing this discussed in relation to hypermobility and mast cell activation gave me a much more useful framework and, actually, some relief to know what was behind it, even though it can be as risky as any other allergic extreme, for instance if your throat swells up (as has happened to me before)or begins to move towards anaphylaxis. Knowing this kind of thing makes baffling symptoms more intelligible, which then makes them easier to plan around and prepare responses to, such as using antihistamines in response and, of course, avoiding triggers where possible. Just knowing how these things can lead to exaggerated responses in a hypermobile body takes away one more unfathomable variable as a possible cause of holiday stress when symptoms otherwise seem to come straight out of the blue or be much worse than usual.

As it happened, the weather was mostly sunny all week, but there was an awful lot of wind on the first day by the coast, and I paid for this later after sitting outside a sea-view café near our rental. The effects were all-over burning flesh later in the day, and not just exposed skin such as cheeks but a generalised pain flare of the kind that, in hindsight, tends to only happen on the breezier days or when I have otherwise been exposed to a lot of vibration in car journeys and so on. This made the podcast all the more topical when a sleepless night from so much discomfort led me to it and the clue that I had so long been missing.

The outward journey on the train had been less provoking than past journeys in steerage, and thankfully our hire car had wonderfully smooth suspension. But this new realisation allowed me to wind back to a zillion other holidays and associate all manner of mystery crashes and memorable pain episodes with windy conditions, vibration, friction, car journeys and air conditioning, not to mention my classically exaggerated response to draughts and cold around the neck and head region around my home in all seasons, making me seem exaggeratedly sensitive to any onlooker but now I know why. All of these sensitivities became so much more profound once Long-Covid came along and I could barely tolerate a car journey of ten minutes in the beginning.

Newly armed with this understanding, I was encouraged to take extra care against wind exposure, even on the warmer, more sunny days of the holiday. I held firmly in mind just how many times a seemingly lovely spring day has crashed me after wind has penetrated lighter clothing worn because the weather has just turned nicer, including one of my biggest downturns two years ago after a coatless hill-top walk in warm but windy conditions that April sent me into a terrible downward spiral.

By adding this bizarre-sounding but suddenly coherent hEDS trigger to my growing self-knowledge, I was able to navigate the week by the coast much better, with minimal flaring aside from the inevitable cost of sleeping in a different bed.

In short, I found a kind of sweet spot between the varying, often contradictory preferences of both my neurotype and my so often quite paradoxical body: my desire for positive stimulation and novelty, for meals out and new experiences, for invigorating coastal weather and yet the non-negotiable demand for periods of low-sensory rest, the complete avoidance of vibration and wind, my need for routine and predictability, my preference for calm. Then there was the ever present need to avoid both the extremes of overheating or getting too chilly, to find a perfect temperature point in the middle at all times of day or night (and thank goodness for all the variations of clothing I brought with me for achieving that in the highly variable Scottish weather).

I began to feel as though the whole experiment was going really well and my confidence began to build. Forearmed with so much enhanced information about myself, I was managing myself adeptly, perhaps for the first time ever, without swinging into the kind of holiday extremes that might trip me up later.

The one thing that did get a bit extreme was sugar consumption. Normally avoided, but with temptations at every turn, I gave into a few things because, after all, I was on holiday. And yet, for me, sugar build-up is seldom pretty. It can lead to inflammatory flare-ups, interstitial cystitis and bladder frequency all night long, increased heart palpitations and headaches, among other things. The only useful thing about it is that symptoms tend to become self-limiting once they outweigh the pleasure and I soon found I had had my fill of all that cake.

Of course, one of the reasons I was probably doing so well, feeling so robust and flying quite high, was that dopamine was being provided in spadefuls: the stunning sea views from our property, the lovely sights each day, the sheer variety of activities, the constant flow of novelty.

This is something I have tried to take into consideration many times before because dopamine can effectively mask a lot of my physical struggle, or even obliterate it from sight, only for the body to catch up later when the dopamine suddenly runs out. It is one of the reasons I can seem to be doing well at a music festival or another interest-led activity, only to crash spectacularly once the event has passed. This is how my ultimate Long Covid crash happened in the summer 2024: after three days of seeming to cope reasonably well at a festival during windy and unseasonably chilly conditions that July, I crashed utterly on the fourth day, with far-reaching consequences that saw me housebound for months and in recovery for the whole of the following year, as a result of which I am now extremely wary of this masking effect. I have to somehow check underneath the dopamine-fuelled layer to ascertain what is really going on.

Being away from home also gave me opportunities to notice some other neurodivergent traits “in action” that usually remain out of sight because I am not around other people much of the time. One of these is overexplaining, especially when someone seems to show interest in me or something I care about.

For instance, a woman stopped me to say how much she loved my walking stick, with its fox-shaped carved handle. I thanked her, then proceeded to tell her it was handmade in Ukraine, that stick carving is something of a speciality there, that she could buy one directly from the maker on Etsy, and so on, until I finally noticed her expression shift from enthusiasm to polite bewilderment. I still don’t fully understand why people ask about something but only want a tiny sliver of the answer. But I am noticing their reactions quicker now, and finally learning that sometimes the social answer is not the whole answer I would prefer to give. In actual fact, it makes me reluctant to bother saying much at all a lot of the time now, especially when I am in need of conserving energy.

That said, I’ve also noticed that, in my case, it can take more energy to avoid all the polite masking expected in social situations than it does to engage with people in a harmlessly chatty way in the various places we go. This is partly because I genuinely energise from small, lighthearted and humorous conversations and partly because, when I studiously say less, I spend even more energy worrying about how I am being perceived. I’m reasonably adept at making those small jokey conversations that pass the time with strangers in lifts or when sat next to them in a café and they honestly help fuel me through all the sustained social effort that a holiday demands rather than carrying off a more studied muteness to avoid being performative at all.

In other words, speaking up, being verbal and confident with staff at stations and restaurants, can act almost like a stim when I need it, becoming one of the ways I generate energy and regulate my mood while tackling a demanding excursion. I find it much harder to switch from mute and introverted to coping around other people than I do to keep a small thread of engagement going, even when it involves a bit of performance. Given how precious energy is for me, I tend to go for the path of least resistance in these cases and micro interactions of no importance get me through with relative ease and less feeling of standing out or trying to barricade myself away.

I also noticed how hard I find it to keep opinions inside my head when I am tired, stimulated, or out of practice at being around people. Dinner each night offered several opportunities to discover that my husband has more instinct for lowering his voice than I do. Again, I have been like this all my life, but I am only now beginning to understand how easily frankness can be misread as rudeness, even when I would always rather be direct than whisper behind my hand. There are times I now know to keep more quiet, usually when I am extra tired and my judgement likely gone awry.

There were many moments on this trip when I was aware of coming across as a bit “extra”, in the way I dress, present myself, speak, gesture and take up space but that, too, is part of unmasking. This marks a refusal to keep shrinking myself into something easier for other people to deal with and a preparedness to take up space as I am.

One trait I couldn’t help noticing, and which has been there on pretty much every delightful holiday I have ever had, is that part of me becomes fed up with the holiday partway through, no matter how much another part is thoroughly enjoying it.

It is likely the autistic part that wants to get back to normality and its usual routines and which has lost all interest now the organising part is over. The same part that asks, “Is this really worth all the upheaval?” and which would like to get back to its fixations at home. That said, I was able to appease it with some note writing and organising as a step towards writing this post when I got back home, which seemed to do the trick of keeping it invested for the remaining few days, and there was never any real tussle this time around, which is proof itself of the AuDHD sweet spot being achieved.

I used to berate myself for having such curmudgeonly thoughts when there was so much to be grateful for. Now I simply notice them with gentle curiosity and allow them to be there alongside the more excitable part of myself that is thrilled and excited to be out and about doing things, allowing it to be okay to feel both things at once. They are not contradictions so much as evidence of the known complexity of the way I am wired, and I am fully accepting of all the various dichotomies I present these days.

Dysautonomia was certainly much worse in the city than in the quieter places. I noticed this both times we were in Edinburgh compared with being at home or by the coast. As soon as we were back in the city, my blood pressure dropped again, just as it did the previous week, and I had to think much harder about salt, compression and cooling. Every sensory onslaught seemed to increase the risk of an episode happening unexpectedly, whereas elsewhere these were much more rare unless the weather was especially hot or I had ignored my pacing rules. I am now wondering what part any of the more unusual forms of urticaria play in these dysautonomic episodes, perhaps provoked by all the added sensory stimulation of air conditioning, EMF and traffic vibration and noise outside the window.

In fact, noticing how dysautonomia is entangled with neurodivergent sensory sensitivity has been one of the most powerful field exercises of the whole trip.

Towards the end of the holiday, I began to notice the particular vulnerabilities that always seem to gather around the return journey. The risk of bracing harder as I become more tired. The risk of anticlimax after months of planning and build-up. Low mood or low motivation coming down like a sledgehammer as the stimulation of the holiday wears off. The risk of translating “I survived” into “I’m invincible” in those later phases of the trip, or conversely assuming that a crash is inevitable and accidentally helping to make it so by thinking it. The risk of associating home with being limited, disabled and symptomatic, rather than bringing home the evidence that another rhythm is possible, if only I can bring back with me some of the new attitudes and most useful observations of the holiday to apply to everyday life.

I also noticed the pull towards old coping patterns: diving straight back into the stressful onslaught of current affairs, rushing around trying to unpack everything immediately to get back to normality, or disappearing into an eight-hour monotropic writing or research extravaganza because I have been away from my usual deep dives for too long. All of these can feel like getting back to normal and yet all of them can become ways of falling off the sensory cliff too fast and feed straight into cognitive and other versions of PEM because of not allowing the transition to be gentle and paced.

The phrase I kept returning to was 3pm is still 3pm, whether I am away or at home. If I need a non-negotiable afternoon reboot on holiday, perhaps I need to stop treating it as optional in “real life” and safeguard it as much there as I have used so effectively while away.

So now I am back home again, and as usual, my body has gone into its post-exertional payback mode: added pain and sensory sensitivity, severe dysautonomia, systemic dryness, severely irritated and blurry eyes, gastrointestinal distress and burning skin-type mast cell response to the previous day’s travel.

In fact, it had begun before I even got on the train, which made the return journey extra tough. None of this comes as a great surprise. It is what it is, and I have to ride out the next few days before I can tell whether my diligent pacing and relatively sensible behaviour kept the aftermath in proportion compared with some of my longer recovery phases. Fingers crossed it is short and sweet for once.

Because in a hypermobile body, even when things seem to be going well, the body can overcompensate to the point of fooling not only others but even yourself into believing you are fairly robust. At least until you start to relax at the end, which is the exact point when the bill arrives.

Only then, with permission to stop bracing and overcompensating, does the backlash show its true measure. That might mean a couple of days, or it might mean weeks of payback. The body has been using fatiguable muscles instead of stabilisers to stay upright for ten days. It has been bracing, shallow-breathing, recruiting adrenaline and borrowing tomorrow’s reserves to get through today.

During the best bits of the holiday, I dared to wonder whether I was coping like a person newly recovered from the worst of the last two years’ post-Covid worsening. As that optimism became more circumspect, I realised I was witnessing something else: a kind of physiological super-masking in motion. A calculated risk taken by a body that really wants to perform normality for all the benefits it affords me: a few days of truly living and enjoying things like “a normal person on holiday”, or least approximately so, along with all its associated morale boost.

What seemed to be happening was that my body reverse-engineered the holiday’s demands from the known finish line of the final date of travel, budgeting its reserves for the precise length of the trip, only getting it slightly wrong by just one day.

The one-night stopover back in the same hotel where we had started, combined with dropping off the hire car, seemed to signal to my body that we were home and dry when we were not quite there yet. It relaxed enough to begin falling apart a day early, leaving me with insufficient reserves for the final train journey.

Low blood pressure arrived early on that final day, even before I had woken up. My digestive system went off the rails for the very first time after a remarkable run of capacity, given my ropey track record. My muscles began to cease their compensatory bracing before it was practical for them to do so, thus everything turned lax. The payback phase had begun in earnest before we had even made it to the train.

One of the accumulated and least appreciated demands of the holiday was that I had been doing something every day without pause even when some of those things were less demanding than others. At home, in reality, I tend to operate on something more like one day on followed by two or three totally quiet days to recover. That simply wasn’t practical on holiday, the one detail conveniently overlooked in spite of all my other pacing efforts. So I had been accumulating fatigue as I went, knowing it would inevitably catch up with me in the end but hoping I would have at least arrived home before it did so.

Having it arrive a day early, with five hours of door-to-door travel ahead of me, was one of the riskiest factors of the holiday and led to the almost inevitable crash that came later that day.

Some of the most affecting symptoms when I crash like this are loss of vision and coordination, and both began at the station before the train. The LNER staff were great at getting us onboard and off again, but the waiting room involved either stairs or a crowded lift, and I had to go and find lunch because I already knew from the outbound journey that the train would not cater for my dietary needs.

That short walk to grab a salad and return almost undid me. There was a moment when I was so discombobulated on my feet that I truly didn’t know where I was in relation to the waiting room and almost headed off in completely the wrong direction, arriving back at the waiting room hot, blur-eyed and flustered and with the distinct feeling I should never have attempted it because the adrenaline had now well-and-truly bowled me over. That was just minutes before I then I had to make my way to the appropriate platform for the train and deal with those final few minutes of tension and upright exertion before pouring myself into the seat for the return journey. Every minute sensory detail of that return trip aggravated my nerves in a way that had not even touched me on the outward journey, doubling and quadrupling the effects of my mounting pain and fatigue, not helped by the seat being positioned backwards.

A trip to the loo on the train saw me flung across the passageway almost straight into another passenger who glowered at me, then completely fazed by the electric toilet door until a member of staff came to help me, then thrown against both sides of the compartment more than once while trying to remove and replace my compression supports, which is a two-handed job, returning bruised and humiliated to my seat.

Then the taxi was very late arriving for the forty-minute taxi journey home. Then, although it was the exact same car that had dropped us off days earlier, it was now being driven by a far less steady driver who drove like he had a fire to get to and took all the corners and potholes sharply, throwing me around against my seatbelt and sending excruciating vibration through my body for the whole duration; it was a hideous ride.

By the time I got home, my whole nervous system had gone into a severe flare of vibrational urticaria: top-to-bottom burning flesh, intense joint pain and vision so compromised it was as though I was peering through a smeary mud-splattered windowpane, an effect that can last for days once triggered. It was ironic that after going to such lengths to secure a smooth and comfortable trip both ways, that final taxi journey unpicked so many of my remaining resources.

Then came the tsunami of fatigue. The systemic overuse of energy required simply to stay upright, move, digest and breathe when you have hEDS is cumulative over several days when the demands keep on coming. Eventually the body’s energy factory gets out of step, no longer producing enough to perform even the most basic functions reliably: heart rhythm, temperature regulation, sleep. My late afternoon my heart was already palpitating and I knew all the early signs of a crash; my task being to keep it in proportion and do everything I could to avoid post-holiday burnout taking root by stopping everything, eating simple, getting to bed at a reasonable time.

So I spent the night suffering hot flush after hot flush, exhausted but wired before bed, almost too fatigued to undress, then wide awake from 3am until 7am, after which I managed a fitful doze for an hour before getting up. My body registered as calmer in its own familiar bed overnight, but recharging was minimal, placing me on the very dangerous footing that can so often turn into severe post-holiday PEM.

The slightest additional demand, such as shivering or bracing against cold, can become too much for such a depleted system. So you have to stay warm despite repeated hot flushes tearing through like forest fires, especially whenever the body relaxes a degree more and releases yet more flushing and mast cell activity.

It becomes a game of artificial regulation on both sides: a neck fan for emergency cooling and vagal reset, a hot water bottle for the alternating chills. Even the long hot soak I had been longing for throughout the whole ten days without a bathtub would have been way too much on that first night home, so I made do with a short warm dip, getting out before it triggered more laxity and further backlash.

As compensatory muscle tension becomes somewhat obsolete in this recovery phase, now you are no longer spending hours upon hours upright, replacement sensory feedback in the form of a weighted lap blanket or a favourite pair of leggings can be really useful for handling this transition, but not so much compression pressure as to push an exhausted system over the edge.

Systemic dryness, as well as mast cell explosion, is the usual aftermath for me, and yet it is only in light of this holiday’s epiphany about vibrational and cold-induced versions of urticaria that I truly understand why it happens. The payback of highly vibratory methods of transport and air conditioning comes back as burning skin and chronically dry mucus membranes, an all-over desiccated feeling that generates another level of nerve pain that is incredibly difficult to describe but as real as it is utterly pervasive.

The whole process of coming down from sustained exertion and under-the-surface tension into the “it’s all over now” state of letting go can feel like making a bumpy landing in a storm: lowering the wheels in faith that there is a runway to land on, trying to hold steady, circling through wind and spray, looking out for the concourse so you can bring yourself smoothly back home again without too much of a bump.

That entire process of come-down in my system can take several days to achieve and take every bit as much effort. Lying too flat, relaxing muscles too much, or removing all support too quickly can make the descent too swift, too rocky and far too chaotic. Yet all the nervous system really wants to do at this point is stop everything and claim some respite from all the overstimulation so how to keep both these factors appeased at the same time is the real challenge.

The temptation, once home and depleted, is to take or do everything that promises relaxation: herbal tea, baggy clothes, excess warmth, total collapse. But hard experience has taught me that the transition from active mode to recovery has to be cautious and paced. Sudden removal of tension, support garments and sensory feedback can hasten the kind of lost proprioception the body reads as danger.

Even the urge to withdraw completely, to feel nothing and speak to no one for a day or two, can be too much sensory deprivation after such high stimulation. I have to introduce quiet in drips, between small acts of unpacking, staying present with the room, talking occasionally to another person to remain connected when the stronger impulse is to shut right down. The abrupt transition itself can be the very thing that undoes me even when the holiday has been a success, so now I try to manage a gentler slide from one state to the other as best I can.

So all of this is the payback of going on holiday, which is something you either avoid completely or learn to accept as part of the deal. What matters is the degree and duration of the payback, and how well I manage to meet it. If I am prepared for it in advance, and if I take the steps needed to minimise the risk of it perpetuating beyond the expectable few days, then it becomes part of the art of travelling as someone who knows her neurotype and physical limitations as well as can be expected, and who is no longer living in denial.

Today, I almost inevitably feel hypersensitive, emotional, reactionary, volatile.

A sudden total withdrawal of stimulation is the very last thing I can emotionally cope with on such a day, so I am back to looking for a sweet spot, only now it is a different kind: one that leans towards neutral without withdrawing everything of interest too fast. The risk is turning to quick dopamine fixes (shopping impulses and snacks) when I would do far better with gentle, comforting enjoyment that makes very little demand of me physically or cognitively.

Writing this post from my accumulated notes is one such activity. It gives me a sense of purpose and achievement without pushing too hard. Going through holiday photos, wearing the same perfume, preparing a similar meal to those we have been enjoying while away, keeping something of the holiday rhythm alive while also resting fiercely: these are not sentimental gestures but transition aids.

This time, I want to challenge the old story about what inevitably happens after a holiday and I want to prolong the interruption this holiday has created. Not by pretending I am suddenly well, or by denying the payback now moving through my body, but by bringing home the evidence that something else was possible.

Perhaps the difference was not Scotland, or the sea air, or even the careful itinerary, but the fact that, for once, I planned as though my needs were real rather than waiting until I broke down to prove them.

For ten days, with enough planning, assistance, repetition, taxis, rest windows, sensory adjustments, self-knowledge and good fortune, my world expanded.

It did not expand without cost but it expanded just the same.

And perhaps that is the real success of the trip: not that I proved myself able to travel like someone without these limitations, but that I found a way to travel with them. I found the sweet spot often enough to recognise it. I learned that 3pm is still 3pm wherever I am. I learned that routine can make adventure possible and that a body can be both fragile and astonishingly strategic. I learned that coming home is part of the holiday and needs as much care as setting off.

So the task now is not to snap back into “real life”, as though the holiday was a temporary escape from the truth. The task is to let it revise the truth. To ask what parts of that carefully paced, more spacious, more responsive rhythm can be brought back into ordinary days. To remember that my life does not have to be either housebound caution or reckless expansion and that there is a middle ground, a sweet spot, a way of living that listens sooner.

And knowledge of that sweet spot, more than any castle, island, photos of puffins or perfectly executed itinerary, may turn out to be the most real thing I brought home with me.

Since gaining a spare bedroom when we moved house, my husband and I have slept apart a few times when I’ve been in a flare or one of us has picked up a virus. It became so apparent how much I struggled when we came back together again that we’ve now shifted to separate arrangements all the time.

We love each other to bits, and I won’t pretend there hasn’t been some soul-searching and coming to terms involved in this. But when the chips are down, we both know it’s much better for my health. Two weeks into allowing myself to think of it as permanent, my sleep is far better, more consistent and surrendered. I’m waking much more refreshed. Though by no means absent, pain is oddly muted or out of mind for increasing lengths of time. A huge win is that I’m calmer, so much calmer, and my mind is remaining more settled, less hyper-animated at all hours of night or day. I can actually sit here and stare out the window without the familiar agitated feeling or like there’s something important I forgot to do.

Which isn’t to say I never have a bad night any more, because I really do, for whatever reason. But even then I get to handle it so much more intuitively, putting on a comforting light and reading for a bit, jotting down some notes without acting furtive beneath the covers or just completely rearranging the bed rather than doubling down on lying still and corpselike, play acting sleep, so I don’t disturb him.

What I’ve described here feels like a form of night-time masking, performing rest rather than actually resting, and doing so in a way that is working so darned hard at not being bothersome to the other person in the bed. That’s quite a sobering realisation to have: that I’ve never been fully off duty from masking all the years I’ve been sharing a bed because of this need to act more conventionally than my version of nighttime behaviour is capable of. Because, for me, it isn’t this clear-cut matter of closing my eyes, sleeping through and waking up again in the morning. It’s much more like a burst of sleep phases of varying length, with periods of wakefulness or instances of early waking with the dawn in summer, that don’t feel inherently unnatural to me, unless they get compared with anyone else. This is what me, truly unmasked, tends to look like and not being able to revert to this, due to sharing a bed, has been one of the biggest things keeping me from living unmasked.

I think, for many of us, the bedroom is the only place we ever get to leave the mask at the door. But then how many of us surrender even that, when we become adults, in order to live out some more typical style of partnership arrangement, adding significantly to burnout risk because we are never truly off duty anymore.

The sheer tension I hold in my body when I’m trying not to be a bother to another person is tremendous, having ingrained in myself the art of seeming inanimate to stay safe over many decades. More and more, I’m noticing how I innately do this whenever I am around other people, if not so much with my partner (yet, it’s true, I do relax to a whole other degree when I am completely on my own). However, holding tension isn’t what I need to be doing overnight when I’m meant to be resting and unbracing all those muscles that forget to turn off during the day. Because, as someone for whom chronic pain is so bound up with hypermobility, with that in-built tendency to brace muscles to stay upright and functional, the very last thing I need is to be holding extra tension throughout the sleeping hours. The very habit of bracing risks switching from adaptive to chronic when there is never a moment’s chance to switch off.

It’s obvious from the little things, like how I actually look forward to going to bed now instead of subliminally dreading it, that this decision is having a major impact on my outlook. Or due to the way I now dawdle out of bed in the mornings, prolonging my alone time instead of springing up just as soon as discomfort passes the tolerable threshold on first waking at some unsociably early hour. Because so much of that discomfort was from only being able to occupy so much of the bed, or not being able to open or shut windows, to pull the blinds up and get in some daylight, or generally fidget as I need to do. Now I can do whatever I want, when I first start to stir, I often do some of those things and then curl up for another nap before starting the day, coming downstairs much later and in a far better state than I used to. It’s like being a teenager all over again.

Thinking about it, since I was twenty, there have only been two or three years when I slept alone, which was over the period during and immediately after my divorce, two decades ago. Even then, I so often wasn’t alone at the weekends and had a lodger and their friends around the place making noise, and a toddler to take care of, so sleep was far from predictably calm. My bedroom became a refuge during those deeply uncomfortable years of having to share my living space out of financial necessity, and proper sleep was elusive in a way that undoubtedly contributed to the burnout that quickly followed. Not long after, I remarried and have shared my bed again ever since, even at times of illness, so I certainly have my long endurance badge and those teenage years of sleeping to my own rhythms feel like a distant dream.

That’s nearly forty years of trying to make sharing a bed work, acting as though there were no other viable choices when in fact there often were. But I think so many of us step around making them, like separate sleeping arrangements “mean something” devastating in a relationship. Simply shedding that mind trap feels like its own kind of liberation.

I’m not someone who has ever tended to let the way other people do things overly influence me, but this one has quietly persisted. I think it has something to do with all those quiet cultural messages we absorb about what constitutes love and commitment. When really, the most loving thing is surely to support each other’s best health and wellbeing, whatever that happens to look like. It can be hard enough putting up with unshiftable necessity, like the way I was forced to share a room with my much older sister for years until she eventually moved out (I hated this with a vengeance as every bone-clicking movement she made, all her perfumes hanging thickly in the air, and her snoring would keep me awake).

Then as a teenager, finally having my own domain, somewhere I could shut the door and climb into bed and decompress, was my very best regulation tool and I relished it with a fervour I can still summon back into my body-memory like I’m there again. That room of my own, with all my books and records, my pictures on the walls and mobiles from the ceiling, was my safe-space, my buffer against all things. Looking back, I think it’s what got me through those years with relatively plain sailing compared to my adult life. I always had those nighttime hours to myself, guaranteed, whether I was sleeping, listening to music, or just flopped on the bed reading or lost in my own thoughts. It’s interesting how quickly my nights are reverting back to that pattern now that I’m alone again. If I really can’t sleep, I simply switch on the nightlight, whatever hour it happens to be, and don’t make it wrong to be active again until I’m ready for more sleep; which I often am all the quicker, as long as I don’t force myself into it.

Most of all, there’s no etiquette to worry about when it’s just me thrashing around rearranging pillows, and nobody else to take umbrage at how elaborate my sleep arrangements can be. It takes a lot of pillows to get my hypermobile body well supported and then I have to rearrange them all over again whenever I change sides. From his side of the bed, there’s no more snoring or heavy breathing, no badly timed toilet visits just as I’m on the verge of dropping off again. As someone micro-attuned to every minutest sensory factor, I need my sleep zone as close to neutral as can be and it’s certainly never that when you share.

And I run hot at night, or at least I thought I did. Funny how I don’t seem to so much when there’s no one else there by my side.

Truthfully, I think my whole nervous system has been on red alert for decades overnight, just from the fact of lying next to another body. Not because there’s anything to worry about, although there was that track record in my first marriage, but because hypervigilance is simply how my neurodivergent body is wired. I strongly dislike sitting elbow-to-elbow with anyone on a sofa, always preferring people to keep their distance and allow me my personal space, so why would I ever expect to feel at ease lying side by side with only inches in between? Looking at it like that, it really makes no sense at all.

So the very idea of sharing a bed unless you happen to love doing it, when there are other options, starts to feel quite nonsensical when you scrutinise it more closely. Like a house of cards, it quickly tumbles down as soon as you move just one so-called justification for it, which analysing both my autistic and ADHD preferences has done in my case. Historically, it was an arrangement born out of necessity when people piled in together, yet it has more lately become an arbiter of a good relationship; a benchmark used to judge. You can sense how people would tut or quietly draw wrong conclusions if they knew you slept separately. And yet, if you scratch beneath the surface, there are so often signs they wish they could do the same. My sister recently admitted one of the reasons she loves going away on so many short trips with friends is the guarantee of a bed to herself for a few nights. That’s a very elaborate way of achieving it, but then I think we women often go to great lengths to adapt in ways that don’t challenge marital expectations rather than facing them directly.

A real test of how I feel about this came when I realised the house we’ve rented for our planned holiday later this year has a spare room, something that wasn’t clear when we booked. Relief flooded through me like warm honey when I spotted new photos had been added, clearly depicting another comfortable bedroom. That was the moment I first admitted to myself how quietly stressed I’d been about the prospect of sharing again, a genuine endurance on top of the considerable physical demands of travel with a persistent POTS flare in full motion, and all my other health issues to manage. It’s hard enough for me having to adjust to new environments, new sights and smells, different room layout and strange food when we go away. Adding broken, patchy sleep on top of that felt utterly overwhelming this time around, after my spell of solo sleeping.

It’s one of the reasons we began this experiment, to try and build up my resilience before we went away, but then to withdraw it when it mattered most was nonsensical. I was genuinely worried I might undo all the good progress I’d recently made with feeling more calm and rested, potentially throwing me back into a long phase of post exertional malaise when we got back. The whole trip now feels much more manageable, which is so important given it’s my first attempt at long-distance travel for years.

The happy paradox is that less forced closeness at night is actually bringing us closer together in the daytime. In the mornings, there’s no longer the risk of an unspoken mood hanging thickly in the air between us, depending on how badly our night together went. I feel far less irritable with him before the day has even begun and he probably feels less resentment towards me and my mound of pillows, which can seem like a third person in the bed. We’ve both admitted we wake up far less often in the night and go back to sleep much quicker when we do. There’s no more arguments about the temperature in the room and whether or not to open the window. As the more nocturnal of us, I can now go to bed later and read as long as I like without feeling guilty and one of us waking up extra early doesn’t force the other to do the same, so we’re both rediscovering our natural rhythm. I even find myself open to more hugs and cuddles in the day, which is significant for someone to whom self-initiated contact doesn’t come all that naturally, but the fact proximity isn’t being forced for eight hours in every twenty-four seems to gain me back some capacity in this regard. Put simply, I have more capacity for closeness as a conscious choice because I haven’t used it all up while unconscious in the night.

That conscious choice part feels like something that genuinely strengthens our relationship rather than depletes it because relationships can turn into a series of unconscious habits over time. Especially given that, before this changeover, I had been noticeably withdrawing more as pain and fatigue took over in recent months. You would think separate bedrooms would be the nail in the coffin of that but it’s been the very opposite. Now it feels like we’re seeing each other with fresher eyes and much happier for it. We come back together in the morning without the low-level strain of the night before, and without taking each other so much for granted. We greet each other with a “how did you sleep?” and start our day off on a more mutually aware and appreciative footing somehow.

So this new experiment in living style doesn’t imply anything “bad” about the state of our relationship at all as other people might assume, but really something rather tremendous. The fact we are both prepared to do what is right for each other’s welfare without gripping onto false ideals that simply don’t fit what we actually need to feel most comfortable in the third stage of life, when good quality sleep could make all the difference, feels like something to celebrate. The difference this is making to the general mood of the house is quite palpable.

And the key is that nothing has to be a hard-and-fast rule anymore. After all, we’ve just proven our ability to be flexible so we can flex our arrangements the other way, when guests come to stay or we simply feel like it, whenever we like. The point is we’re actually thinking about it now, not just taking it and each other for granted. We question things instead of allowing the status quo to drag on and on forever because it is so-called normal and because nobody dares speak up about how they truly feel; which is the attitude we’re shining into all corners of life these days. Nothing about the way we live, the choices we make, is taken for granted and we’re open to reappraising it all in light of what we’ve come to know about our personal preferences, needs and tolerance levels lately.

Reaching this point of deliberately shaking up all the long-held assumptions and seeing what still lands for us at the end has been one of the greatest gifts of the post-diagnosis phase of our neurodivergent lives together. Combined with the way retirement has removed all outside time structures over the last year, the process is allowing us to sculpt something quite different out of the same old lump of clay that we have always called our life together. The matter of altering our sleep arrangements has been one of the biggest ones so far.

Because I’m not the only one noticing the benefits of deeper, far less interrupted sleep and, once we both got past the most sticky thoughts, about shoulds and oughts and what constitutes normal, we quickly realised that what we’re actually making together is a far better fit for both of us.

Since the post-viral aftermath of my latest illness bowled me over again, I’ve been taking a complete break from writing, and that’s something new because I’m nearly always writing something behind the scenes, whether I publish or not. This time, I truly didn’t and it’s been almost four weeks.

Since starting this blog I’ve kept up the pace of publishing something every week, and anyone reading regularly will know that what I write is pretty long and involved. It can take up a huge portion of my time and energy, which isn’t to complain but to point out the degree to which I commit to it and also hyperfocus on it, regardless of whatever else might be going on. Take for instance that last piece, which was written lying in bed with the very flu-cold that floored me for almost two weeks. Yet it kept me sane, in that initial phase of being bed-trapped, having something I could jot down in chunks to offload my mind every now and again, noodling words and phrases as a kind of brain exercise I could still manage in short bursts. My ADHD brain was still whirring and my autistic need to make structure and sense out of it all was eager for the focus and sense of routine it kept going.

Then, as ever, it wasn’t the virus itself that floored me so much as the aftermath. Like a version of the post-exertional malaise that sweeps in after pretty much everything I do, so delayed and seemingly disconnected that it confounded me for years, I got up from my flu only to get hit twice as hard. The intense aftershock, all too reminiscent of Long Covid, left me so fatigued that I was almost afraid I’d been thrown back into the mire of it and, having taken two years to get this much back on my feet, the prospect was pretty alarming. Physically speaking, POTS came back with a vengeance and the slightest thing had me experiencing PEM with heart flutters.

So I pulled rank for once and stopped everything over-physical or cognitive, which was new for me. For three solid weeks, I didn’t let myself start any single piece of writing and nothing more than short notes jotted down. Towards the end, I allowed myself a couple of published notes and began brainstorming for this but I wasn’t about to go soft on myself, even when my brain began begging for the deep plunge of monotropism like a child begging for sweets. Because I could tell I was still far too fatigued to spare the mental stamina it takes and, for once, I was quite determined to step in and lay down the law before risking that the cognitive version of PEM might take over and tip the precarious balance of my recovery. It wouldn’t be the first time and, with big and quite unavoidable demands coming up soon, it wasn’t the time to take a risk.

It took some considerable willpower but I managed to justify it as a highly necessary adaptation made in response to the way I could tell just how much my capacity had altered since this latest bout of illness coming up on the heels of a very hard winter flare. I was back in the risk-zone and I wasn’t prepared to take any gambles this time, knowing how one wrong foot in a post-viral aftermath can lead to the kind of prolonged recovery that takes weeks or even months to come back from, as Long Covid has taught me in a way I will never forget even though it’s been the repeat cycle of my life for decades. Maybe I’m finally getting it, after all these years.

With my daughter’s visit for Easter imminent and life still going on with its many sharp twists and turns around my broader complex health picture, plus the need to lie low and gather reserves for a holiday coming up that is already something of a gamble, plus a couple of house projects that had developed their own momentum, something had to give. I let that thing be my writing, knowing I can never give it less than one hundred per cent. Because once I start, all my thoughts go there, even when I’m meant to be resting.

What I’ve been noticing in these last weeks is that cognitive fatigue can be as bad as, if not worse than, trying to push through physically. Yes, POTS has been severely active and PEM a regular occurrence for a few weeks now, made worse by even the mildest kinds of physical exertion, but it’s not only about overdoing things physically. Any kind of cognitive wrestle can leave me severely overstimulated, with that brain-melted version of fatigue that leaves me wired and tired at once, and in a kind of tremulous anxiety state, as though too much energy has been forced through circuitry that has lost all its protective coating, or like I’ve pushed highly temperamental archaic machinery past the point of its modern load capacity.

For instance, it’s like trying to force an unstable old-style hard drive to work too hard, knowing that all the extra heat and grinding effort could be its very last straw. This analogy carries some real personal truth at the moment, because the more benign project that became my alternative hyperfocus during the worst of this cautious sedentary phase was exactly that: attempting to coax a decade’s worth of precious photo archives off an ancient external hard drive, knowing the bad sectors were a genuine threat to everything on it.

To explain, a different kind of cognitive pursuit can sometimes offer relief when I’m all written or talked out and is that “a change is as good as a rest” version of respite that I’ve learned to lean into, given my ADHD need to find something to focus on when one door closes. It can be a kind of stim to give it some other toy to play with.

This particular task had been hanging over me for some time, having carried said hard drive to my new home in a box held carefully on my lap on every journey, so fragile had it become. Being forced into a sedentary state for weeks seemed like the ideal opportunity to tackle it, involving as it did the simple task of shifting folders one by one to a new stable hard drive. However, as is life, it turned out to be far less simple than that and at times highly precarious and nerve-wracking.

I had to learn tremendous patience, hold nerves of steel, and resist the urge to push too urgently at something that needed to be handled with extreme care or it would overheat or stall altogether, those precious folders no longer accessible, something which happened more than once. Knowing when to stop, when to let the hard drive cool down, when trying harder would only make things worse, is key with precarious equipment — and with my own brain during a phase like this. The living metaphor of a drive that very nearly gave up the ghost before I could salvage my precious memories from it was all too poignant for me to miss.

The satisfaction when I finally saved the archive was something else, a triumph given a couple of requests for tech advice were far from encouraging. Better still, when my daughter came home for Easter, the thrill we got from watching videos I hadn’t dared play for decades, going through mountains of nostalgic photographs together, was reward in itself. Now, if only I could learn how to handle my own internal machinery with such kid gloves and absolute patience, not always forcing it to overheat at the worst possible times…

So the theme of this first post as I get back into the saddle was already there in front of me, because I did something differently there and it made a real difference. Instead of pushing through, I made myself take the long pause my nervous system was clearly asking for even though, at some level I can never exactly explain, it felt risky to do so.

I interrupted the way I normally am, which can feel highly compulsive and driven, urgent and compelled, and let it be different for once. In fact I noticed those very times when the compulsive feeling was at its height and then made myself take my foot off the accelerator, just to see what it felt like if I let myself coast along under natural momentum for once instead of putting in more energy when my nerves are running at their hottest. It was an interesting experiment, noticing what that felt like and how my nervous system responded differently, like a sort of fist unclenching.

I also broke the security of living in patterns of self-protective behaviour so hard-worn they leave tread marks in the carpet of my life and yet the world didn’t come to an end. And I did this, not because I wanted to suddenly leave myself feeling more exposed but to try on the idea that I wasn’t always as universally exposed to disaster as I thought I was. People continued to read and comment and subscribe to my writing, the world didn’t end and, meanwhile, I made for myself the very breather my nervous system so clearly demanded but which I’ve so often denied myself before.

So then it occurred to me, in that way a new pattern often surfaces to be noticed when I allow my thoughts to go soft, that this isn’t the only way I’ve approached things very differently in the last few weeks. In ways both small and less so, I’ve been accommodating myself far better and not just bulldozing along in my usual way just because of some pressure justification I can come up with. So without this post pretending to offer anything truly revolutionary, I want to put down a kind of list, a set of self-observations, as quietly celebratory markers of some of the better accommodations I now give to myself compared to just a few short months ago before my autism diagnosis.

The fact that I’m genuinely starting to do this, not just pay my needs and preferences the same old shrugging lip service as before, especially when the chips are down, feels like a promising sign that I’m starting to actually live this neurodivergent life in a way that, little by little, doesn’t keep on sending me back into overwhelm and burnout.

Because here’s what I know about the burnout cycle: the dangerous moments aren’t always the ones where I’m obviously struggling. They’re the ones in between, when I have enough energy to mask and push through and enough functioning to look, even to myself, like I’m coping. When, in actual fact, those are precisely the moments that need more accommodation, not less, so that limits don’t get exceeded before I’ve noticed.

The sensory honesty

One really small thing came up as I lay there in convalescent mode: I needed to order some better jeans before we go away in a few weeks. So I ordered two pairs that, on the face of it, ticked every box and looked pretty good on me, which is sometimes hard to achieve given how self-conscious I can be. Yet, having walked around in them with the labels still on, I noticed (because I pay so much more attention now than I used to) just how much the fabric and cut was registering as irritation, how the weight and resistance of them was all wrong, how my skin didn’t like the feel, the stitching or the layout of pockets against my middle. Not in an obvious way but in that way that can register as the felt sensation version of a high-pitched noise or scraping chalk on a blackboard, irritating and eroding my tolerance all day long, though I hardly know why it’s so bothersome at the logical level. It’s the kind of thing that can make me feel tired, wired or at the end of my tether even before the day has begun and yet, for a whole lifetime, I’ve been in the habit of ignoring it or scoffing at it; an internalised ableist response that echoes what someone else might say to me, were I to verbalise my invisible issues with the jeans or anything else touching my body out loud for them to dismiss as nonsense.

However, not so this time. Rather, perhaps because I was extra sensitive after illness, I paid close attention to what I was feeling and acted on it promptly, quietly taking the jeans off without a second glance in the mirror and packaging them up to return them. Instead, I bought two more pairs of my current most comfortable ones, content in the knowledge that, whilst not excitingly new, they will deliver me predictable sensations that stay neutral below the increased sensory burdens of my upcoming days when we go away. Without fanfare, I had claimed a small victory on behalf of myself, and it felt pretty good.

Similar to this, though it sounds very non-eventful to anyone who doesn’t get sensory issues, there was the matter of ordering some new bedroom blinds. I’d started thinking about this over the worst phase of Long Covid and then it came back to bug me in the early stages of this illness, stuck here staring at them day after day, as written about a couple of posts ago. So as soon as I was out of bed again, I was back on the project with a vengeance, making fabric choices in a way that was almost entirely about what would look most striking and cheerful in the room and how much I had fallen in love with a particular material (fabric design being a lifelong passion; and I’d recently found a small-scale designer whose work I really like).

So I allowed myself to get thoroughly carried away, with samples arriving in the post almost daily which I then pinned up to my old blinds or taped to the wall for the best part of a fortnight so I could stare at them in different lighting conditions. Old me was in my element; I’ve run interior projects like this all my life and am not afraid of going after bolder choices.

However, perhaps because of the illness, I came back to the project much more self-aware than usual. The longer I sat with my chosen samples pinned up against the light the more I had to be honest with myself. The almost abstract yet organic patterns being quite messy, the dominant colours, the repeat of the design every metre or so, began to aggravate me just as much as I objectively liked and admired them. I tried to imagine living with what I was looking at through all the different seasons, during the most variable of health days, the low-stamina days, the ones where I just need to sit in a quiet low-stimulation room, and the noisiness of what I was looking at began to feel like a cacophony. In the half light, shapes took on faces or looked like blood stains and I found myself fixated in that same way I was so often fixated and aggravated by curtains as a child. This wasn’t what I wanted to be dealing with on my frequent sleepless nights.

How many times before have I ignored exactly this warning and given in to maximalist urges that drag my sensitive nervous system over hot coals in the long run? Nightmare recollections of my old hallway and stairs wallpaper, in our previous house, and how much what I had once adored came to aggravate me for several of the last remaining years there began to haunt me. Any decision made now will have to be tolerated for years to come. I’m so much more self-aware, when it comes to how much toll bright colours and busy patterns can take on my sensory sensitivities, than I used to be, even though that observation can stand in direct conflict with the artistic part of my nature that loves to be flamboyantly expressive. It’s just one of those many contradictions about who I am and harmless enough, but when it comes to creating a restful space, as someone for whom deep surrender can be elusive, there can be no compromises.

In fact, living with a personality that loves colour and big expressiveness alongside a sensitivity to living spaces that has a direct impact on my health is often a very complex thing, but I think I’m finally starting to get it.

My tolerance levels are highly variable these days and what I can cope with on a crash day is completely different to how much I can take when I’m in a more excitable state of mind. Added stimulation is so often not what I most need at those times and it’s been a big surprise how much I love living with the calmer, quieter walls and spaces in this new house since we moved in, following our old house where every room was decorated to a different palette cluttered busily with too many objects and statement wallpapers, colours or fabrics.

It’s taken me decades to learn this about myself and now is the time to live by it, maintaining this house as a soothing baseline I can cope with all of the time. My artworks on the walls and expressive fabrics on my bedding do most of the talking these days, the beauty being they can easily be moved around or removed as my moods dictate. Being able to tone down a space as quickly as changing the cushion covers has become important to me but blinds just hanging there would be a very different matter.

So I chose something softer and more neutral, with the same organic quality I was looking for but picked out in more monochrome shades that hold the floral theme of the room without shouting about it. In the end, it felt like less of a compromise than an evolution.

Taking ownership of treatments (that are, after all, meant for me)

During the week straight after the virus had me bed-bound, I had a final paid therapy appointment coming up with a therapist who was winding up her one-to-one sessions, and I could have claimed it but I knew I didn’t have the spoons for it. As is often the case in a post-exertional phase, the need to go inward and even shut down verbally for a while was quite dominant, and yet old me would have pushed on through because it was scheduled and I didn’t want to let anyone down or not do the right thing.

Worth naming to myself: while I’m a verbal processor, I go through phases loosely related to burnout, overwhelm and fatigue, when I’m more or less mute and forcing myself through those phases in situations reliant on talking is no different to any other version of bulldozing through.

I was so conflicted and I felt distinctly awkward sending that message saying I didn’t want to go ahead with the final meet-up, like it might be taken personally, though that wasn’t how I intended it. My therapist actually congratulated me when I cancelled. It was exactly the right choice in the circumstances and I made it on behalf of myself, without quite as much of the usual hesitation or too many feelings of “I shouldn’t” hanging over me.

I think that, in most circumstances, it would have been deemed better or even imperative to end with some closure to the previous sessions, tying things off neatly with a bow you could say, but we could both see the advantages to letting the ending be completely organic in this way, driven by actual need not ceremony.

And so the therapy sessions that had been so powerfully instrumental to my integration process every fortnight since my autism diagnosis last summer just quietly faded away without any fanfare and yet I felt quite all right about it. Strangely calm and ready to move on, actually, like I had reached a sort of plateau with them. I’m still unsure whether I’ll pursue something similar any time soon or even much further down the line; and I guess I will just wait and see what feelings come up about that. What felt really good was the chance to at least question their continuance rather than continue out of not knowing when to stop, especially when I am the sort of person who never likes to make the first move to end something.

Then there’s a deeper observation that has come out of my recent circumspection about all my various therapeutic relationships and how I tend to behave in them.

For a long time, even in spaces specifically designed for honesty, like a talking therapy, I’ve tended to perform a version of myself that is designed to be beyond reproach. A lot like being back at school, where I never once let the teachers see the cracks that might hint at what was really going on beneath the surface, I was always trying to show off my best work rather than just getting real about where I actually was. Forever showing up as already finished, at the punchline, ready to move on.

This is a pattern that goes well beyond therapy. As an accomplished observer and pattern-detector, I so often know what optimum looks like ten paces ahead and can perform that well ahead of the game. However, I don’t often allow that, in my humanness, I might not be emotionally or circumstantially there yet. It’s a kind of extreme perfectionism that dares only show the ideal outcome, even to myself; the client that has already fixed herself before she’s even sat down with the person across the table. Whatever this looks like on the other side, which may be a sort of arrogance or know-it-all quality, it’s really just armoury; a form of self-protection. Something learned when I wasn’t going to let other kids pick holes in me or teachers humiliate me.

Once I know what the ideal looks like I make myself present it as a fait accompli, just to demonstrate that I know it. The perfectionist in me won’t agree to anything less and that’s been the problem: conflating knowing something intellectually with having actually lived my way through to it.

So there’s a breakthrough of sorts in seeing this, being the admission that I’m never quite as independent and self-contained as I make out I am but do occasionally need someone to sit with me and work through what doesn’t feel quite so finished and performance-ready. Saying that once and for all feels important, like it might lead me into new layers of self-understanding and release. A way into doing the real work that I’ve skirted around for the longest time by telling myself I have already done it. Whether that’s work I should do alone or with the help of another person remains to be seen but the power of the admission still stands.

This lifelong habit of not needing anyone else, of being my own best counsel, is a thing I’ve been genuinely proud of and rightly so, but it’s a very mixed bag. Some of it is innate, yes, but some of it has been adaptive and preemptive, projecting an image of coping before anyone else can pick fault with the way I am so obviously stood here on my own much of the time. Projecting it always as a choice, not an accident. I inevitably appear different and stood apart from others so I try to live up to that by making it more so. It’s a stance that protects me and not alway such a choice after all.

Yes I am, by nature, a loner but that doesn’t mean I don’t need some trustworthy people with whom to connect, and connection takes vulnerability, at least some of the time.

For now it feels like the right thing to take a pause with talking therapy and to concentrate on the physical side of things. Yet if those sessions hadn’t been stopped for me, I suspect I would have continued on and on, which is an important realisation to have, similar to the way I have a track record of putting up with friendships that have long since run their natural course, just because I prefer to avoid the kind of awkwardness that walking away tends to stir-up. Fate intervened and I feel ready to take a breather. I would like to think I am getting better at stepping in at the right times rather than letting things become as habitual as they once did.

I admit it can be so hard to step in and say no to the very support that is so hard won and may even have been quite elusive for years. So I have a past history of continuing therapies for too long out of politeness or misplaced gratitude, or pushing through sessions even when most flared or depleted. All of this calls for increased transparency with myself and with those I am working with, which is work in progress.

For most of last year, having finally found someone prepared to work with my extremely glitchy body after years of searching and, in the meantime, not having any hands-on therapy at all, I turned up for all my physio appointments like a kind of religious undertaking. This was sometimes in spite of how desperately fragile I was feeling that day, often with the direst consequences at times when mere touch could trigger lasting flares. I would often know this was the very high risk I was taking on some of those days and yet turn up anyway, which is the mad part of how committed I was. It was yet another version or surrendering what I most needed to some supposedly higher imperative along the lines of not messing the other person about, and I eventually saw it for what it was and discontinued those sessions around Christmas last year.

This time, when the post-viral flare happened, things felt different internally, like my whole mindset around therapy had shifted, and the objective of doing what I could to stay regulated informed any decision about whether to attend or not…not misplaced politeness or urge to please.

It really helps that my newer physio is an hEDS, dysautonomia, chronic pain, fatigue and neurodivergence specialist with complex health herself and who has seen it all before. It felt quite unlike before, when I was always holding in my mind how the therapist was perceiving my current state from a perspective of not really understanding what it looks and feels like when all those things come together in constellation. I would shrink from cancelling in case she thought I wasn’t trying hard enough or giving in too easily.

Yet even with my new physio, at least up until the point of coming down with the virus, I had still been doing the same well-rehearsed dance in my head when I didn’t feel well enough. Even though she explicitly understands the patterns of POTS and PEM and asks me each time whether she’ll see me next week, inviting me to update her throughout the week and do what feels right, my internal critic could turn on me. The option is always there to say no if I have too much else on or lack the capacity, but this inbuilt pressure I carry not to disappoint other people’s expectations is such a long-time driver in me. I have to police it constantly or it keeps forcing me back into scenarios that quickly mount up when I’m not coping.

So when the virus first floored me it still took a lot, and some hesitation, for me to skip a week. Since then, and perhaps it’s all part of these shifts that have been happening, I’m being completely honest with my physio about where I am each week, which has led to sessions conducted entirely on the bed or the mat with pillows (they’re held at home which allows for ultimate adaptation) paced much slower and more cautiously than ever before, and without any of the guilt or sense of failure I used to carry.

One week, we talked more than we did any movement and yet it felt like exactly the right call and was entirely relevant to the bigger picture of managing my complex health, not some imaginary goal of getting better or hitting some arbitrary target as most physios seem to aim for. Knowing when to slow down or stop is as big a part of this picture as any amount of forward progression.

Part of this new stance towards therapies is preemptive: so I’ve paused our session this week because I have a concert coming up on the same day and know, from hard-won experience, that the one plus one is going to be too much for me. Which isn’t the same as saying I couldn’t do both because I probably could, but pushing through like that comes with a very high risk of consequences that taking the scheduled pause doesn’t. For starters, the sensory load of an hour-long video call with movement and talking followed by a concert is way too much for me in a single day and that’s no small matter; certainly not one I can afford to ignore any more.

Yet time and again, in the past, I’ve told myself “it’ll all be fine” when I’ve known perfectly well it probably won’t be. Finally walking the talk feels really good and more self-supportive than any amount of making myself show up at times of limited capacity.

Starting as I mean to go on is a big part of it. I’ve been in the process of starting to work with an acupuncturist, still only at the stage of an initial health history session, and yet sometimes those long intake interviews can be the hardest of all: a new location, a new person, a brand new sensory onslaught, on top of going over the full track record and a lot of highly triggering topics again, like reopening that same accumulated history that got me here. Such a session can have lasting consequences even before any treatment has been delivered.

So this time I intervened and asked for some not unreasonable accommodations, yet ones I had never asked for before. As a result, an hour-and-a-half face-to-face assessment became a half-hour video call, supported by a detailed written questionnaire and a health summary I put together in my own time from stored notes I could easily rearrange without too much re-engagement. The whole major upheaval of an out-of-the-house appointment was replaced with a low-key chat from my own sofa and I was able to put together such a comprehensive health background from my notes that she had more than enough to fill in any blanks (another upgrade: keeping such a document as a rolling account of everything I have going on makes filling out forms and informing treatment providers so much easier than it used to be). I’ve also set a precedent that I have to be the one who leads on pacing, length and intensity of treatment, and she’s more than happy with that even if it means adapting everything she normally does.

I could still hear myself, even then, worrying about how I appeared on the first call. Wanting to counter any negative impressions she might have formed from my long list of health issues. Even fretting about whether I’d had time to wash my hair beforehand because I didn’t want to seem like I hadn’t made an effort, despite the fact that a shower on the same morning as an appointment can be the straw that breaks the camel’s back. On the other hand, I had the usual worry that I would come across as too normal-looking for someone with such a chronic health picture and it took all my willpower not to fall back into performing illness on camera to live up to my notes. All of these things add to the exhaustion and overall toll taken when you’re already at limited capacity.

This is all just another iteration of masking, trying to perform normality, and I saw it in myself in time to halt it. The whole point is to start real with this woman and with anyone else I intend to work with. This isn’t, after all, some kind of performance art; it’s my real situation, which has to be met wherever it happens to be, or not at all.

I needn’t have worried in her case; she was lovely, very astute and also late-diagnosed neurodivergent herself with a number of neurodivergent clients (I seem to be a heat-seeking missile for such people when I pick therapists to work with these days). Having worked with countless other people with chronic fatigue and even Long Covid, I could tell I would be in safe hands and the final piece of self-advocacy was that I made it clear I would only begin sessions once I felt I truly had capacity, which might not be until mid to late summer now, given the need to get back to my baseline after this virus, recover from my holiday and deal with one or two other health things that are even more pressing when I get back. Starting a new therapy when my capacity is already thin or at the same time as another new treatment is the worst idea and I stand up for that self-knowledge these days.

Yet I was still dreading raising this, having to manage her expectations, but she was utterly fine with it. In the end, I felt like I had made yet another new mark in the sand by laying my actual circumstances on the table from the outset.

Not forcing it when I’m not feeling it

I feel like my other pastimes and interests, not only writing, deserve a quick mention here because even my attitude towards my art has undergone a noticeable evolution lately. It’s now been four months since I last picked up a paintbrush and I won’t pretend that I don’t still have the faint remnant of an inner critic stuck in my head telling me that I should be getting back to it by now, but I’m also getting far better at ignoring it. My new benchmark is: if I’m not feeling it, I don’t have to make myself do it.

For decades I’ve run my art practice like some sort of sweatshop whereby, no matter how symptomatic I am, I set myself the often highly unrealistic objective of turning up at my easel at least two to three times a week (it used to be much more) for most of the lighter months and a good portion of the winter season, to churn out a long procession of canvases like my life depends on it. Even when I don’t have a ready outlet for them, though I do also license my work so there is always that urging me on, not that the trickle income I get from it is any great incentive. It seems to be more about justifying my own existence with some kind of demonstrable productivity than enjoyment some of the time. So if I’m not in the full throes of doing this by at least mid to late March, which is usually my better time of year, I actually start to feel like I’m committing some sort of crime.

For the first time, probably ever, I’m allowing it to be fully acceptable that I’m not forcing or coercing myself to deliver output and, most of all, not making myself feel guilty or wrong about that. After all, I’m supposed to do these creative things primarily for pleasure, which really does defuse the argument that I “should” be doing it when I’m perfectly happy not to, most of the time, these days. There can be a lot of pressure around getting creative with your hands when you look at how other people managing chronic conditions pass the time and, yes, I’ve done that for years, but right now it doesn’t seem to be calling me so why should I force it? What am I losing exactly by letting it slide?

I think part of it is that I have never been a joiner-in, and art was my way of taking part in life. It kept me hooked up to other people in various ways and it was a way of communicating when words escaped me. A more acceptable iteration of me that people accepted even when they didn’t quite know what to make of me. And yet I’ve been questioning all of that territory to do with feeling I somehow “have” to be connected, have to be in relationships with others since diagnosis, and this part of it also seems to have come under scrutiny. The show-and-tell aspect of producing art just so you can say “look what I just made” feels like it’s so mixed up in all the ways I’ve tried to please others and curry favour with people over the years; bordering on a fawning response at times. Perhaps I just need the mud to settle on all of it and to work out for myself whether I’m doing it for me or for other reasons that need dismantling.

There’s also no point to it at all if it has to be forced. A lot like the compulsive twitch that sometimes keeps me writing at times when my flow is far from a gushing tap and more like a rusty old pipe, I’m starting to give it the dismissive wave it truly deserves when the muse isn’t there, and then get on with my life. As I’ve found with the writing pause, the world doesn’t come to end when I take a break.

Speaking up for what I really want

This one was a bit triggering at the time but I kept myself on the level and held on to what was most important to me; which is good because these tend to be the very things that go to pieces when I’m mostly concerned with how I think I am being perceived by other people.

Before my illness, I’d already set the ball rolling with a landscape designer who is going to do something with my blank canvas of a garden, which matters enormously to me given how much of my life is spent at home. In our old house, I developed our garden over a period of more than a decade and it reached its zenith just at the point when we sold it. For years, that glorious space, like an extra room that opened up in spring and summer and gave me something to look at in winter, kept me sane through some otherwise really hard times, even beyond the point when I could no longer manage the gardening myself and needed someone to come in and do the physical side of it. It’s been hard staring at a more or less blank space for two summers now and the idea of transforming it has been keeping me going. So I put together an extensive planting list and brainstormed some ideas in photos early in the year and my designer had just got the first draft plans drawn up at the point I fell ill.

So we set up the grand reveal meeting for the week following, assuming I’d be better by then, and I was initially looking forward to it. However, by Friday of the previous week, I already knew that an hour-plus meeting in the evening (the only time she could spare) was still way outside my capacity and I was in the process of cancelling everything in my diary for the week ahead. This felt extra awkward in her case as she doesn’t know me that well, which is exactly the kind of circumstance where I often end up pushing on through rather than rock the boat, but for once in my life I stood up for myself and admitted I couldn’t manage to see her just yet, no matter what she thought of my excuse.

Owning up to the reality of struggling in a way that seems bewildering to anyone who doesn’t understand that a conversation in your own home can flare you for days felt really exposing at the time. I also worried that she was annoyed with me from her tone on WhatsApp and because she had rushed these designs out for me, eager to see my reaction, and now I had stopped her in her tracks. I wasn’t saying that I wasn’t excited, only that I didn’t have the capacity to turn it into a social demand and a full-blown face-to-face discussion about any changes in such a low-spoons week when the end of every afternoon saw me crashing onto the sofa for hours. It was this part of my admission that felt both significant in terms of accommodating myself but also highly exposing if she didn’t really understand what I was saying. The very fact of having to manage her expectations and have the conversation at all, in messages that are so easy to misinterpret, felt like hard work given how depleted I was.

There was also another factor bugging me: my need to be able to take in the plans at my own pace and not get distracted or wrong-footed by the expectation that I react appropriately or politely on the spot, an important differential I’ve come to know about myself lately. Much as I hate dealing with surprise gifts when the giver is sitting right in front of me, having to arrange my face into the right expression when the garden designs got revealed might have taken me right off track from being honest with her about what I thought of them. It was a situation where I already felt set up to fail, whatever I did. This made it even more imperative that the reveal would be by email not in a face-to-face meeting and I stuck to my guns.

When I finally saw the plans and they weren’t quite right, in spite of the build-up she had given me (some of the parts that had her most excited were the very ones I really didn’t like) I was so relieved I had claimed myself the time to process this in my own time and space. The urge to acquiesce anyway, in order not to disappoint her or rock the boat, was still there but at least I had time to organise my thoughts better…and to notice how compelled I felt to be polite rather the honest, which was truly fascinating but something to be dismantled.

In the past, such situations have put me at extreme risk of agreeing to what I really don’t want because the instinct to fawn is far stronger than the resolve to be honest and risk conflict. By insisting on seeing the plans in my own time, I had both protected myself from this and given myself time to properly formulate my genuine feedback, not what she wanted to hear.

I then got really honest with myself about what the garden project was actually for, which is the creation of a truly life-enhancing space designed for me to live with and spend time in for many years to come. Its design has to add quality to a very limited existence or there’s no point doing it at all. Then, with my thoughts clear, I went back with my viewpoints laid out in detail, my own modified version of the design, some photographic prompts and some gentle suggestions, and I was able to do this with tact and diplomacy rather than the knee-jerk awkwardness of a physical meeting where my delivery might have sounded too strident or abrupt. I then insisted on another site visit once I was feeling better, rather than the quick chat on the phone she suggested, since phone calls are another pet peeve of mine, adding stress and much more potential for misunderstandings, whereas I want to actually walk her around the space and get her to see what I see and why it’s so important to me. Although I don’t relish meetings, that’s the kind of meeting that is practical and which I can invest in, when I have the spoons for it.

The old urge to keep on worrying about how I was being perceived kept asserting itself throughout all of this but I just kept reminding myself that I’m not in this to make a new friend and that a professional worth their salt will appreciate feedback and collaboration.

This strong tendency I have to get so carried away by the desire to appease and impress, to be liked and considered “a nice person”, can make me lose sight of what the other person is there for, even when I’m paying them for a service. At the same time, I can come across as quite blunt in my delivery and I live in dread of those times when the flow of communication becomes this terribly awkward thing due to any bad feelings left hanging in the air because of a miscommunication I was part of. It’s a case of striking the right balance between establishing a healthy working relationship and keeping people on side, which is not always that easy for me to do, but buying time to consider things and formulate the right response, rather than delivering either the fawning or the over-blunt responses, is definitely the way forwards.

This time, I managed to do it without coming away feeling like I had spoiled anything. The working relationship is still intact, my garden plans are one step nearer realisation and I’ve managed to keep my emotional distance in a scenario that might have previously sucked me in and spewed me out the other side if all I cared about was her perception of me or whether my feedback was well received.

The rejection sensitivity reframe

Related to this is the matter of that old trip wire of mine, rejection sensitivity dysphoria, which can so often roll up like a third wheel in any given relationship. I had certainly noticed an awkward tone hanging in the air between my garden designer and me for some time now and was busy trying to interpret it behind the scenes of all our messages and emails back and forth. I could feel it there as solid as a piece of furniture stood in the middle of a room and yet nobody was saying anything overtly unfriendly, my well-rehearsed conclusion being that “it must be me”.

When she sent me an abrupt message saying she needed to talk, a couple of days before our rescheduled site meeting, my stomach flipped over and my radar went wild, convinced there was something badly wrong because I could feel it in the atmosphere. I began running all the scenarios; basically all different versions of her dumping me as a client and telling me exactly what she thought of me.

When it came to it, the call was actually about her own recent health struggles (which she then told me about in detail, as I had previously had no idea), her mismanaged expectations around workload since those issues cropped up early this year and the realisation that she couldn’t do my plans justice any time soon because she was now struggling to keep on top of things. She felt awful at letting me down, apologised for being off her game and not meeting our original timescales, and gave me the option to cancel and walk away with no fee or postpone everything ready to get started in earnest next year.

In other words, I had done that thing so many of us sensitive neurodivergent folk do: I hadn’t been at all wrong in detecting the unspoken atmosphere hanging in the air between us but I had attributed it wrongly. I had felt it and then assumed it was all criticism directed at me and that I was under attack, not that she was the one struggling with her own problems and dreading talking to me or letting me down.

What I’ve described is such a common RSD trap: you pick up on someone else’s anxiety and fill in the blanks to interpret it as a threat directed at you when it is actually nothing to do with you at all. Your nervous system was reading the room accurately, just misattributing the source.

As soon as she started telling me her own scenario, I saw this at once and was able to reframe things so quickly that the conversation turned right around. I could sympathise with how hard the conversation had been for her and offer her the kind of understanding that I would hope for. I was able to use my own health experience to turn my response into genuine compassion rather than frustration or defensiveness, which she clearly felt and was grateful for because, after all, she had been dreading this call as much as I had, likely putting it off for weeks.

That’s the thing about having lived in a difficult body for such a long time: it builds a kind of fluency in other people’s struggle that most people don’t have and I could feel her relief at my response pouring down the phone line. I think I genuinely surprised her with how well I took the postponement of everything until next year and the way I didn’t direct any of the disappointment I was feeling at her but took the news graciously and calmly, still resolved to keep her on. I genuinely respected her for being so honest with me and not just stringing me along; I would much prefer that kind of working relationship to one that is all about telling me what I want to hear.

The garden delay is actually not such bad news on reflection. A summer of getting the design exactly right in my own mind, no rushing into planting in heat waves, starting properly over winter rather than rushing anything, is not such a bad prospect, though old me would have been more impatient. Most of all, I was able to witness what my own rejection sensitivity had done here in a way that I won’t forget in a hurry. A reminder to question what it is that I think I am feeling and not always to assume it’s targeted at me.

Being brutally (refreshingly) honest about capacity

Then as our holiday approaches, which is the biggest thing I’ve attempted this side of Long Covid, I’ve been getting so much more honest with myself about my capacity than I ever normally do. I’ve been forced to admit that what we are doing is already quite a stretch, even without this latest post-viral phase setting me back this spring.

This includes getting brutally honest about the fact that I can’t risk tackling some of the most obvious sightseeing at our destination due to rough terrain, gradients, steps and cobbled surfaces. Yes, this realisation took a minute to sink in as I recognised the extent to which I had, once again, been kidding myself that I would somehow leave all my usual limitations at home and grow a new body to take on holiday with me. How many times have false expectations tripped me up over the years when more realistic ones could have made for far better management of my own and others’ expectations, and far less payback afterwards.

Instead I’ve redirected my attention towards what I’d actually enjoy rather than what I feel like I “should” be doing: seeking out the most photogenic nooks and crannies, the slower-pace activities and less-frequented gems that other visitors tend to miss, a chance to live more like a local, keeping well away from tourist traps and crowds. Seeking out lunch spots that are genuinely prepared to adapt to my requirements rather than the ones where I’d politely sit through ingredients guaranteed to trigger me. Only ever entertaining places that can be booked in advance, no walk-ins or queues, no makeshift solutions, no arrangements that leave me stranded without somewhere to sit down and rest or use a toilet when I need one.

I’ve planned all my meals ahead with the hotel and a handful of well-researched restaurants where I’ve already made my dietary and other needs known, without feeling the need to over-explain. And when the first hotel we booked months ago ceased replying to my requests in a way that felt like they were taking my needs seriously, I cancelled and found another one without a second thought.

It’s been self-advocacy at every turn: not making myself small and convenient, but believing myself worthy of the effort it takes to accommodate me without over-contextualising everything I say to people to the point of embarrassment or exhaustion. These have been my new benchmarks this time around.

This list stands as a small act of documentation, proof to myself that something is genuinely shifting. The compulsion to act as though I’ve recovered from acute illness the moment the acute phase ends, to launch back into full circulation and busyness as though everything has normalised and I should be making up for lost time, is one of the oldest tripwires I have. The impulse to push through, to keep momentum, to present as normal, fashionable, acceptable and even self-sufficient, to stay visible and to always appease, at the cost of everything else, has been a driver for so long that interrupting these things, even once, even in the small things like a choice of clothing that feels right or cancelling appointments, is its own kind of evidence that real shift is happening.

The world didn’t end while I was absent for those few weeks, quietly noticing these patterns (which time away from it gave me nest opportunity to do). The writing was still here when I came back to it, perhaps all the better for it, and apparently so was I.

As someone with twenty plus years of chronic illness behind me, there’s something I often notice about acute viral illness when it happens; something oddly contradictory, whereby underneath all the discomfort and unpleasantness of it, I sometimes feel better than usual. By which I mean that somewhere inside all the coughing and aching, there’s a thread of comfort, calm and steadiness that’s usually missing from my life.

It’s an odd thing to admit; risky…like implying that at some level I like to be ill (which is a vulnerable thing to risk giving voice to after years of being treated as more or less a hypochondriac by so many people who don’t get chronic conditions). But it’s not what they think; nobody likes to come down with a nasty flu-type virus as I have this week, having thought I’d got away with just a mild case when my husband became pretty ill with it last week. Having had to deal with post-viral syndrome more times than I can count, including long-Covid, it’s never a welcome thing to come into contact with yet another virus.

And as I spend so much of my time in convalescence living with chronic fatigue, chronic pain and dysautonomia, I’m hardly likely to welcome even more of it and especially not at the point when life is supposed to get a bit less constrained, the weather more amenable, with more opportunities to get out of the house as my body starts to shed some of the worst effects of the winter doldrums. Why would I welcome something that feels a lot like full-blown flu just as the weather starts to behave a bit like spring?

And yet here it is again, this feeling of acquiescence to something typically absent in my highly wired AuDHD existence, where my brain seldom ever slows down or shuts off, my thoughts so rapid, my fixations so overlapping that I seldom get any true respite; yet here it is anyway, forced upon me, and no other option but to surrender.

There’s another layer to this…the permission that “illness” gives me to stop when I otherwise so often feel that there is none. Like so many of us, I seem to have been programmed with this sense of terrible wrong-doing whenever I cease being productive, not allowing myself to just sit and be because of some inherent belief, learned in childhood and culturally, that idle hands are the devil’s workshop, or that stillness signifies laziness.

Ironic really, since there never was a more internally pressured, self-tasking person than I; forever coming up with new things I could be doing or forcing myself to go that extra yard, a trait that, combined with perfectionism and ADHD, has provided ideal conditions, a veritable hothouse, for this lifetime of repeated burnouts.

But when a virus strikes, it’s as though the decision has been taken out of my hands; the inevitability of surrender so fixed that my brain is finally left with no option but to give in without a fight for once, which it hardly ever agrees to do otherwise. And there’s relief in that; some sort of comfort from the inevitability.

So I’ve noticed it again this week; this bedfellow of comfort and relief, like being a child again, permission granted to step down from all the coping and striving and attempting to control things, to succumb to not knowing and not controlling for once.

There’s clearly no negotiating with this particular virus; no dosing up and pushing through, in fact the harder I’ve resisted the worse it has pushed back. So it’s felt like a case of allowing something else to carry me at its own leisurely pace, one that I seldom otherwise get to experience as someone used to having to take care of myself with the high degree of self-sufficiency and tenacity that is a lifelong learned habit and which constantly keeps me living at speed.

But it’s my body itself that has been calling the tune this week, demanding a long slow pause, and I’ve been forced to admit that I’d do far better if I would only let it be in charge of me for once, rather than the other way around, because to fight it is only to delay my recovery, in my considerable experience of post-viral illnesses.

And ultimately there’s a comfort in that feeling of stepping down and letting something else know better than me, in a paradigm where I’m so used to the survival impulse of keeping myself busy, urgent and vigilant at all times, as is so hardwired into my nervous system.

I used to assume this bizarre feeling of calm surrender, and of even a kind of relief that comes with viral illness, was some sort of endorphin flush; the body’s way of masking the pain and discomfort.

Then I thought it was nostalgia; memories of being nurtured, taken care of, perhaps a cue to mother myself or let myself be mothered, or memories of times when getting to stay off school or work for a few days was quite literally the nervous system reset I so desperately needed; a survival asset at times when bullying or risk of burnout were at their peak.

Now I wonder if it’s also a physiological reprieve as well as a chemical or emotional one, and largely because of a few things that rarely get to happen in my normal day to day life but which get more or less forced upon me when I’m ill. Things that amount to an improvement as compared to my normal existence where my physical needs so often get overridden or dragged along face-down in the dirt by my AuDHD nervous system.

One of these is that I finally stop, and I mean really stop. At no other time do I actually allow myself to cease the urge to make use of all my time in triplicate; to stop persuading myself that, since I’m just lying there, I might as well do this other thing too, inventing activities and fictitious deadlines to appease that ADHD part of me that demands to be always occupied with something.

For instance, finally dropping that highly compulsive habit of mine that involves picking up my phone like a nervous tic, whether it’s to write something down, check something, look something up and who knows what else, repeated every second minute. Systemic fatigue has certainly become much more chronic for me since the advent of the mobile phone. Yet when I’m properly ill, I can hardly be bothered a lot of the time.

Simply ceasing to be so neck high in all matters “outside world” can be enough of a respite to feel like winding the clock back to a far simpler, more innocent time before my nervous system became so frazzled, and is like an absolute tonic after just a few days.

The other is that my breathing slows right down when I’m ill, which is something that very seldom happens otherwise, and which then feeds into a deeper sense of calm. Because try as I might, my stress levels rise as soon as I wake up on a normal day, and I suspect it’s because my breathing veers towards the hyperventilatory nearly all the time.

My breaths are typically short and shallow, fitting far too many in where there should be just a few longer and more sustained ones. When I’m concentrating on anything I’m doing, I frequently pause and even forget to breathe, followed by sudden exaggerated inhales, sighs and yawns. I often deliver long breathy sentences, pausing to gulp down air before continuing and very often feel breathless after relatively minor exertion, a lifelong trend since long before chronic fatigue.

In other words, the overall trend is that I typically vacillate between a kind of chronically winded state, where I nonetheless try to keep anyone else from noticing my struggle by keeping my breath extra surreptitious and small (this feels so tied in with masking; yet another effort to seem more calm than I actually am and not draw attention), and someone who keeps forgetting to breathe like it’s not important. Neither of which may look like classic hyperventilation but they are a known version of it in terms of having the same effects.

What this does is deplete the body of carbon dioxide by over-breathing it away. This matters more than it sounds, because CO₂ is what allows oxygen to be released from the blood into the muscles and tissues. When you chronically over-breathe and CO₂ drops, oxygen paradoxically becomes less available where it’s needed. Yes, you’re breathing more but delivering less, and the muscles don’t receive what they need, so they tighten and brace and that bracing becomes a way of life.

The result being that they’re always left on, always poised for action, an effect only worsened by hypermobility and the daily demands of being upright, not to mention all the bracing habits involved in the inherent guardedness of being neurodivergent in a highly overstimulating world. Relaxation remains elusive in such a body, even when you think you’re taking a moment.

The hypermobile body, a bit like a person that has to keep going in and out of a dark house eventually leaves the lights on all the time to save the effort of finding all the various switches, takes a similar shortcut only, in this case, it’s your muscles that are being left switched on day and night.

Something I keep having to remind myself: when you live in a chronically hypertonic body, the hardest part is learning to turn it back off when you’ve done with moving.

As I’ve aged and lost even more core strength post-Covid and menopause, I’ve watched my worsening hypermobile posture compound this effect further and a normal day sat upright, whether I’ve attempted a walk or not, can be a very hard day on my body due to the compensations it demands and the worsening effects this also has on breath. When I hunch, my ribs seem to collapse; and even when I lie down on my side, my shoulders fold inward and breathing gets even more compromised. So the weakness in my back that makes it hard to sustain any correct sitting or lying posture is, in effect, a chronic breathing compromise.

Upright time further compromises muscles that are attempting to be supportive when they should be engaged in movement; attempting to stay rigid enough to keep blood supply flowing against the odds of over stretchy blood vessels and overly lax ligaments and joints. All of these factors compound the problem and only proper rest lying down in an appropriate position can do anything towards recovering from it.

Yet when I’m ill I stop doing all these hyperactive things. I finally take the proper bed rest I baulk against the rest of the time and I set myself up in positions that genuinely support me. I frequently cease talking altogether or for many hours at a time. I generally tend to lie flatter and less hunched because of body aches or coughing. I finally stop trying to use all my time as some sort of double-up, scrolling while watching TV, fidgeting when listening, doing three tasks at the same time when I’m up tackling one of them, holding both breath and tension in the body as a way of bracing, squeezing every thought I have into the next piece of writing or research like my life depends on my next piece of productivity.

I am a consummate mental fidget and that normally reflects in my body, which frequently gets overlooked because of proprioceptive weak spots that put bodily needs lowest in the pecking order. So for once, my body goes genuinely still, and it’s remarkable how that reflects as the degree of muscle ease and calm I seldom otherwise get to experience. It feels genuinely delicious compared to my normal state of affairs so no wonder I start to notice something sublime about these periods of illness; I’m giving to myself something so rare, so distinct that I can’t fail to register it.

Then, when illness forces me to stop, when stimuli simply can’t reach me in the same way, my heart slows down; sometimes by ten beats a minute on my daily average. In other words, my breathing, without my interference, finds its own slower rhythm and my muscles, no longer starved of what they need, begin to release.

So I lay in bed on that first severe day of the illness that had already been brewing for a handful of days (let’s call it Day One) and for once was genuinely too weak to attempt multitasking; too exhausted and too addled in my brain to keep up with any thoughts, so I did nothing but doze or gaze out the window, for hours on end.

It’s so rare that I do this anymore but I recognise it as the “inattentive” day-dreamy version of ADHD that was quite active in me when I was much younger, certainly as a teenager (somewhere along the line, I learned not to allow it so much…) and yet it’s really not the time-waster it seems like to the outside observer; you could even say it’s a kind of lifeskill to be able to go with it. It’s so close to meditation, the benefits of which I will come back to later, its untrue and yet nobody had to teach me it and the irony is I unlearned it, because of life.

What was remarkable was how good at it I’d become by the end of that first day after the virus took hold. I truly had managed to maintain a sort of extreme stillness in my body and mind, an almost catatonic state at times which, so long as I wasn’t alarmed by it, felt deeply therapeutic — like sating a deep thirst for inactivity.

At some level, it already felt like my nervous system had stepped in to rescue me from my own hyperactive thoughts and, even as I was experiencing it, some part of my mind was fascinated by it because it’s so rare. It was the kind of noisiness that hits your ears when there is true silence in a room; the din of absolute ceasefire and the shock realisation that the world didn’t come to an end because I stopped trying so hard.

I even moved downstairs later in the day and, for a short while, wrapped myself up and lay in the sunshine, with a pleasant breeze that made it ideal conditions for me, listening to nature sounds, and yet the inner stillness only continued. In spite of coughing and hoarseness, there was something sublime about the way I was bobbing in and out of this lucid meditative state and holding it steady because my mind had finally stopped calling the tune.

Some part of me was lapping it up so hungrily, like it had been starved of this for eons. I spend so much of my life wishing my brain could go still for a while and give me some respite and here it was; stillness enforced by a viral invasion. No wonder my system seems to grab onto these viral opportunities and hang onto them, sometimes for months; it’s the only way it ever gets me to stop.

The telling thing was that my Garmin watch recorded steady “blue” low stress levels all day long, almost unheard of on a normal day, when my stats usually look like a forest fire of oranges and reds across the screen from when I first wake up to when I go to bed. My blood pressure on my Hilo band was like a constant line with no spikes at all for the whole 24 hour period; remarkable, a truly once in a blue moon thing for me.

These algorithms don’t lie. And what they were showing me wasn’t just that I’d had a restful day. They were showing me what my baseline actually looks like when the conditions are finally right. Not medicated into it, not exhausted into it, but arrived at through nothing more radical than stillness, slow breathing, and the absence of cognitive demand. The body, given what it needed, demonstrated what it was capable of.

The next day couldn’t have been more different.

Because on Day Two I decided I’d had enough of this and was feeling a bit better so I allowed myself to wrestle with a mental problem. The problem itself was real and needed to be faced, but not explicitly that day; yet once the thought got through that I might as well get onto it since I wasn’t doing anything else, I became monotropic about it and wouldn’t let it go. For the bulk of that morning I was either on my laptop or my phone, or even just in my head, wrestling with some aspect of this reasonably stressful issue, when I should have still been convalescing.

And yes it’s an old pitfall of mine to assume that as long as the body is reasonably still, it still counts as resting, in spite of whatever cognitive or emotional strain I’m putting myself under.

I also got out of bed first thing rather than later in the day, ostensibly because I needed a shower but also because it was the lovely warm spring day I’d dreamed about all winter. I was mostly eager to get outside again, though it lacked the pleasant moderating breeze of the day before, hoping to doze in the warmth and enjoy the best of the lovely weather at the same time. Immediately, I hit the problem that it was too hot in direct sun and too chilly in the shade yet I persisted for a while. And here’s where I need to explain something, because on the surface it makes no sense that the same stillness, only moved to an outside environment on an intensely sunny day, could generate such a different response.

I live for sunny days and I always used to be such a sun worshipper. In fact, for years sunshine was one of the most reliably comforting things I knew, and I long for it all winter long in the way only someone who feels the absence of it in their whole nervous system really understands. But something I noticed with each worsening health flare over the past decade, and especially during long-Covid, is that my tolerance of actually being in sunshine dropped like a rock. What was once warming and comforting became highly overstimulating, and my watch algorithms frequently show the stress response even when I’m sitting perfectly still in it, doing nothing that should register as effort at all. Which is ironic, because sitting outside in nature is one of the very few times my brain gets to go quiet outside of illness, but I actually do far better with this in a more moderate season, well wrapped up in a chair, than on a full blown sunny day without a breeze, which lands like a highly overstimulating stressor these days, even though all my other senses want to lap it up.

So there’s a brief sweetspot, in early spring and sometimes early to mid autumn, where I can wrap up and sit outdoors for a while and my system stays calm. But as soon as it tips into what most people would consider ideal sunshine, pleasantly warm, a properly nice day, my body won’t tolerate it. It’s a version of dysautonomia coupled with a depleted sensory buffer for anything the nervous system registers as extreme, and sunshine past a certain point of intensity, especially without compensatory air movement in the way of a breeze, really qualifies as too much for me.

So while my husband was outside most of that second day for hours, happily recuperating in a sun lounger, dozing off the dregs of his virus, my algorithms were spiking all over the place, telling me my system wasn’t coping at all; not only while I was out there but for hours afterwards.

There’s a sort of tragedy in this, the grief of yet another surrender: something I once loved and took such comfort from, now on the growing list of intolerables. When we go somewhere and other people want to sit outdoors, I’m the one always looking for shade or requesting to eat indoors. Holidays have to be planned around where and when the sun won’t prove too much, and I don’t mean tropical temperatures or anything close to them; I simply mean an ordinary warm day in England, with those Mediterranean temperatures I used to relish now well out of reach. Sadly, hot weather intolerance is a well known dysautonomic factor of Ehlers Danlos Syndrome and it seems to get rapidly worse with age.

In other words, I couldn’t spend long out there before moving back indoors and apparently that little bit of exposure I’d had, combined with getting up too soon, had already completely overwhelmed my virally challenged system because then something else happened.

For years on and off I’d experienced a degree of sensitivity that translates as allodynia, and this came back with a vengeance half way through that day, getting progressively worse as the day went on. Suddenly not only were my clothes annoying in that clothing-tags-and-seams way familiar to any autistic person, but every inch of fabric began hurting and chafing like I had second degree sunburn all over my body. The sunburn feeling persisted long into the night, making comfort a highly elusive thing as the virus now moved to my chest and presented a much more broken and restless night. Every contact, even the light pressure of bedding, felt like absolute pain.

Back in my old house, in my old life, this symptom was a much more regular occurrence which makes me suspect it has a lot to do with autistic sensory overwhelm, which a viral load will only ever exacerbate (bearing in mind I have been dealing with post-viral syndrome for years).

It’s the sensation I first associated with EMF sensitivity, when I became so reactive around WiFi routers and cordless connections I couldn’t have them anywhere near me. There were about five years where I could only use ethernet connections and had to turn off pretty much all electrics in the house using an isolator switch to get any sleep. There was even a time I would have to switch them off during the daytime, to give me some respite from the constant sensation of stinging, burning, buzzing pain; like electric ants in my body, burn sensations around different zones of my skin, crawling and vibrating sensations. I’d lie in a zero-gravity chair so it didn’t overtly press on any particular part of me, and simply not move for hours, putting myself into a kind of sensory isolation state that no one else could understand the need for. Without that degree of withdrawal, I could be in agonies of burning skin and pressure headaches that beggared belief given there were no external signs of anything wrong with me. It took me years of concerted efforts to increase my tolerance, steadying my health plus moving house, to recover from this.

In hindsight, I think there was a mast cell component to it, mast cell activation being one of those pieces of the hEDS jigsaw that can dramatically lower the threshold at which the nervous system tips into crisis, flooding the body with inflammatory signals that the skin and nervous system then interpret as threat. And the environment I was living in at the time was incredibly overstimulating: an increasingly busy road, almost constant heavy traffic with all its noise and vibrations, all the fumes from those vehicles, strong EMI from the ambulance control unit a couple of doors down and shop security devices opposite my house, so many WiFi routers and hotspots available on the list when I rarely turned WiFi back on, road rage scenes outside the house to do with the nearby shops and to do with neighbour wars over parking issues. Day and night, there was always something going on to overwhelm my system.

I do believe in the reality of environmental hypersensitivity, having lived it, whilst also appreciating that not everyone exposed to busy roads and WiFi routers ends up unable to wear their own clothing. The central sensitisation that made me so exquisitely reactive to EMF and ambient stimuli was itself the downstream consequence of something else I didn’t yet realise for most of the years I was living there: a neurodivergent nervous system, undiagnosed and unaccommodated, running on chronic overload and burnout for decades, its threat-detection threshold worn down to almost nothing. The environment wasn’t the primary cause but the last straw in a system that had long since run out of buffer.

In the end, I couldn’t wait to sell up and move on and it’s true that I haven’t really had those same episodes of allodynia since we settled somewhere infinitely quieter, though I remain deeply environmentally sensitive. Apart from when I had Covid and at times during those first few months of long-Covid, I don’t recall the last time I had that full burning-skin sensation where flesh feels like I’m missing a layer of skin exposing raw nerve endings.

In fact it was a particularly sudden and severe episode of allodynia and associated neurological pain around my trigeminal nerve (teeth, ears, eyes, face and head all firing at once) that first alerted me to Covid that time I got it, long before any sign of cough or fever. My nervous system flagged the viral load neurologically before any conventional symptom appeared. I’ve noticed this many times before, right back to my original health crash twenty years ago and even further back than that: how viral presence can manifest for me in this way, as in neurologically rather than through the more obvious signs of illness that other people look out for.

What makes allodynia particularly self-confounding in the context of a complex chronic condition with a dysautonomic component is that it isn’t only external stimuli that provoke it. My own body’s responses become the threat. When I’m chilly, the goosebumps themselves can cause agony when skin is already activated like that and a viral load brings with it so many shivers that this can come on at any time. Hot flushes when I move or eat often register as pain, itching, burning and flushing skin but can be so much worse when allodynia is active. It’s like being allergic to your own body’s responses, your own thermoregulation, the most basic housekeeping functions, turned against you. And when it’s at its worst, it’s your own body producing so much of your own torture that over time it alienates you from your body altogether. You stop being able to trust it or being able to inhabit it without bracing or fearing the worst. You can find yourself tensing, not breathing, not relaxing because of some subtle register of pain at the skin level, triggered by some invisible environmental threat your hypersensitive system has picked up on.

What I didn’t know until recently is that allodynia (pain caused by light touch, clothing, water) is a known and frequently overlooked sensory issue in autism, well documented in the research though rarely mentioned in the standard literature most people encounter. Autistic individuals can experience profound discomfort from stimuli that are not painful to most people, due to central sensitisation and heightened sensory processing. There’s also a documented triangle between autism, chronic pain, and connective tissue conditions like EDS, with central sensitisation sitting at its centre, not as a psychological phenomenon but as a neurological one, the central nervous system amplifying pain signals in a way that can be mistaken for behavioural difficulty or hypochondria rather than understood as a straightforward feature of how this kind of nervous system is wired.

What strikes me now is that the shower in the old house, which often felt like the water hitting my skin was filled with tiny shards of glass on the days I was at my sensory tolerance limit, was giving me a clue about my autism long before I had any idea that was what it was. I’ve not had that here unless really unwell, though during the worst phase of long Covid, when even standing was an impossibility, I began using a shower stool, and I’ve kept it. Not only because it helps with the dysautonomic factors, the dizziness, the POTS, but because it also keeps the sensory demand lower, keeping me from bracing against the effort of staying upright while simultaneously managing the sensation of water. I simply relax more when I can sit down and take my time with the sensation of water. It’s a small accommodation that turns out to matter more than it looks.

But then the allodynia didn’t arise on that first day, when I was allowing myself to stop and be ill, to convalesce and be still. It was the layering on day two that did it, which tells me something important.

The mental problem let through the gate, the upright posture, the different light and heat hitting my skin, the much more stimulatory outdoor sensory exposure, the unfamiliar clothing textures on a sensitised day, all on top of the viral burden when the body was just asking to be still. Each one might have been manageable in isolation but being stacked, they tipped the system over the threshold where allodynia kicks in; where the nervous system’s threat-detection has dropped so low that ordinary sensation registers as pain, and the body’s outermost layer, its so-called buffer, feels like it’s under attack from all sides.

The viral exacerbation of the nervous system response is really just making visible what happens beneath the surface all the time in my case. My neurodivergent system lives very close to the edge, and doesn’t need any help from me to tumble over. With practice over the years, I grew much better at steering away from overstimulating exposures, information and tasks, especially when in a flare. Lately it’s been less conscious because I’ve mostly curated a life that provokes rather less overstimulation (a highly withdrawn, hermit-like life it has to be said) and I’ve done rather better. But then sometimes stressful things need handling, yet there’s still a choice about when is the right time to push my limits. During a virus, or in the middle of the night, or just before bedtime is clearly a “no”. Doing nothing but tackle “issues” one after another, with no proper respite, no pull back, no appropriately corrected breathing or low gravity rest, is the biggest “no” of all and yet that’s how I typically live my life, leaving very little bandwidth to spare for coping with the next overwhelming thing.

For the record, I’m writing this post as a series of notes jotted down at 6am on Day Three, which is itself a small enactment of everything this piece is about. There is a version of early-morning thought-offloading that is genuinely regulating for me, meaning a small amount of processing in the early hours when my mind often delivers great clarity can help me reset, reassuring me that nothing useful is lost and then returning me back to sleep. But the moment I push it towards something resembling a deadline, a concept of completion, of getting it to the point of perfection, the algorithms change entirely. My watch (if I remember to use it…which I’ve committed to doing since I stopped using a Visible band to help monitor chronic fatigue) will tell me when my heart rate variability has changed for the worst. My body will tell me, if I listen properly. It’s a very thin line; I very suddenly reach the point of “too much”, and even more quickly when I’m ill, but the transition line is always incredibly thin and abruptly crossed.

I’ll be reverting to bed rest today, seeing if I can get back to where I was the day before yesterday. But first, more sleep.

This part was written in hindsight on Day Four: it was obvious by now that this virus had far from done with me plus I lost some headway with recovery on Day Two when I pushed it.

But at least I’ve done as promised and stayed in bed for much of the time, only getting up to convalesce on the sofa later in the day, then going to bed early.

At first I could tell how amped up I had become because of getting up too soon the day before; it was like the day after a social event and I couldn’t get my nervous system to step down or become calm and steady like it had been in the first quiet day of convalescence. My watch was showing medium-high stress just lying there. The urge to fidget kept arising.

By about lunchtime of the first day of reverting to proper bed rest and reducing all stimulation to a minimum, I was at last able to surrender to just under an hour’s sleep, my mind finally stepping down from the edge; a minor miracle for me in the daytime under any circumstances as I don’t often surrender to a proper nap, even when I need one. By the afternoon and evening, I was drifting in and out of calm, lucid dream-like states all the time between bouts of watching undemanding things (old B&W movies with lighthearted comedic plotlines) or just lying there still. Impossible to explain to someone who doesn’t have that ADHD component how rare this mental stillness really is, and I became determined to enjoy it, in spite of the awful body aches, the breathing issues, the barely there power to my voice and the jelly legs on standing.

I couldn’t help wondering how different things could be if only I could routinely be like this for a portion of every day — preferably without the viral load. Just imagine how much healthier my nervous system would be. My benchmark of tolerance would likely move higher. I’d be more rested, less running on empty, less reliant on adrenaline to hop from one preoccupation to the next or to even stand up and move. Dysautonomia might actually back off. I might get to reclaim some of my sensory buffer and cope better out there in the world. I might actually enjoy some real perspective on what’s really important instead of always feeling like I’m putting out fires.

I began to ponder another thing: how coming down with a virus sometimes presents as a kind of shutdown with special effects because there are so many similarities; the need to withdraw and be on my own, the absolute requirement for reduced sensory input and permission to stop processing anything cognitively. It’s not the first time this had occurred to me since realising my neurodivergence six years ago.

More than once, I’ve been left wondering whether catching a virus, or coming down with it so bad, compared to the next person, was just a sign that I desperately needed to stop the overwhelm of everything else going on but didn’t know how to initiate that pause any other way. Not like inventing the illness or exaggerating its effects but using it opportunistically at some level. That “I need to stop and get off the ride” feeling was certainly the case at the point I got Covid. Life had become a merry-go-round of stress for months due to a relocation process that was far from over when I contracted it (we were still in transit, renting and waiting to complete on our house purchase) and it wasn’t about to get any simpler any time soon. When I so much as tried to keep the world spinning with even more busyness, once we had moved in to our own home a couple of months later, long-Covid came along and pulled the rug from under me, forcing the longest shutdown of my life; one that I’m still dealing with.

Not recognising that I’m at the brink of a shutdown triggered by overwhelm seems to be the risk factor here. Either not recognising, or not accepting, I’ve reached that point of “enough is enough” is what lays me wide open to not only catching things but catching them “good and proper” and then running with them for weeks, months and even years. It’s exactly how my original burnout happened and turned into the chronic health saga that has lasted for over two decades now.

I’m hoping that the more responsive I become to the fairly regular need to withdraw and reduce sensory input, to just let everything go still and be on my own so I can reset, the less often this will need to happen. It has to be a top accommodation I claim for myself in my life, going forwards.

These days I know just how important shutdowns can be and I don’t tend to fend them off or apologise for them like I used to. Nor do I apologise for needing alone time (this week or so of sleeping alone has done me the world of good and has thankfully not been a diplomatic crisis because my husband now understands so much more about my particular needs). I don’t make myself feel weak or rude or needy when such feelings arise and I don’t hold with the idea that I’m inconveniencing anyone else any more. I’m perfectly entitled to make claim to whatever it is that allows me to regulate my nervous system before it gets pushed over the limit.

By Day Four I was able to do a bit more writing in bursts from my bed, compiling some of this post from notes I’d jotted down during illness but I still needed my bed for most of the day. I kept to the balance of writing to offload but never pushing it and it was only for half an hour or so in momentary bursts. Top priority was to take all doing-ness off my plate and intervene as soon as I could feel that pressure mounting to ignore the warnings and keep going. I was starting to get so much better at noticing all the ways I self-sabotage my own hunger for proper rest by throwing a rock into the stillness just to see the ripples form.

Allodynia had backed off…mostly…helped by staying in my PJs day and night all week against the internal criticism that this was turning me into a slob. But it was still flaring-up in the evenings, along with all the other symptoms getting worse (the chesty cough, the congestion) around that time of day as always tends to happen. I clearly wasn’t out of the woods of my sensory threshold being exceeded just yet and the skin-thing apparently acts like a canary in the coal mine.

I was acutely aware of how, in times gone by (and not that long ago), I would have convinced myself by now that I was “better” enough to get on with normal life because I seemed less ill from the outside, making less noise with my coughing or croaking (although my voice was still pretty depleted). I would have made up my mind that my symptoms were mild enough to manage or push on through and that I’d had enough recuperation. In days when I was still working, I would have dosed myself up and gone back to work, afraid to get into trouble if I took more time off.

However this stage of illness is actually (I’ve learned the hard way over the years) the most precarious part for me and it’s very different compared to how it is for those who can reasonably expect to bounce back after a few days of a virus and resume normal life. My track record of post-viral illness means that the moment I begin to sense symptoms easing is precisely when I need to be most cautious, most still, most resistant to the impulse to re-engage with anything. It’s the enforced rest and stillness in that window directly after acute illness that signals safety to a body coming out of its overreaction, rather than risking triggering a doubling down of its defences, the kind of cytokine storm response that can have long-reaching consequences. As someone who is prone to post exertional malaise provoked by the merest thing, this is especially true, even though it would be so easy to argue I’ve done nothing but lie in bed for days, not strictly exerting myself; but then fighting off a virus isn’t nothing, even when it is pretty hard to know what the body is actually getting up to beneath the surface. I know this delayed reaction thing is a significant risk for me, from hard-won experience. I know it, and yet I still find it one of the hardest things to honour but, this time, I’m giving it my best shot.

If my neurodivergence is the thing behind the delayed response (the vulnerable aftermath that sneaks in slower and lasts much longer than for other people), then it’s time that I formally recognised it and preempted it. When I’m sick, and in that aftermath, my sensory bandwidth becomes much narrower and I’ve just demonstrated, in real time, what happens when I rush myself from the sick bed into situations that overstimulate, even if that overstimulation isn’t relatable to the next person. The snowballing effect that leads from one mistimed over-exposure to even more hypersensitivity, unleashing a sort of cascade of exaggerated responses that get quickly out of hand, is a lived experience I’ve had far too many times to ignore it.

Back in the old days, I would have found myself back at work before I was fully recovered, even more hypersensitive to noise, strip lighting and everything else going on than ever, yet ostensibly “better” because I wasn’t coughing anymore. And I would be downstairs resuming my domestic chores because I could manage to get out of bed, then wonder why I was suddenly jelly legged or so fatigued I could barely function or remain upright. The similarities between POTS flare and flu-legs has not escaped this week.

I simply don’t fit into what is broadly considered the “normal” or “accepted” recovery period from anything that has been a jolt to my system, be that a cold or flu virus, a period of grief, a change or adjustment; whatever it happens to be. I always, always, always need more time to recover and adjust back to that thing they call “normal” and I’m finally coming to know that about myself, and to accept it, with no hint of criticism.

So there will be no rushing out of bed or to resume “normal” life after this virus. I’m waiting for permission from my whole body before I make that move, which takes a degree of inner listening that I tend to sideline once normal life gets going again, therefore I actually need to remain on the fringe of life for a while longer, paying close attention. And getting much better at remaining attentive once I’m busy again is something that needs to be corrected if I’m ever going to integrate the kind of calm and steadiness I’ve tasted this week into my everyday life.

Day Five: more bedrest, though some part of me was starting to quietly rebel. It was beginning to feel like I was recuperating because I had made it a rule rather than because I needed to…except, when I stood up or tried to prepare something more elaborate to eat, my body would quickly tell me I was wrong. A small piece of reality hit me from the outside world when I went downstairs and opened the post and I clearly didn’t have the resources to handle it. Damage limitation was necessary, then more rest. I’m watching myself, and my contrary impulses more closely than ever, including that habit I have of trying to take charge of life before it takes charge of me, something which keeps me in that guarded, braced, hypervigilant state when I don’t always need to be. I keep telling myself the most powerful thing I can do is surrender to letting it all go some more. There is nothing that can’t wait till another day.

And here I am on Day Six where I can tell I’m coming back to the surface a bit because I’m cognitively much more switched on than before (but here lies the danger of assuming that brain power means I’m now physically recovered; that old chestnut, which has tricked me many times before). I’ve been able to pull together my notes into this post and I’m writing some of the more philosophical parts to bridge it together; the gift that has come out of it all…you could say the overview, the wisdom.

So, after very careful consideration, I decided to come downstairs and even to get dressed, putting on those kind of clothes that feel soft against the skin yet warm enough to keep the goosebumps at bay.

Here’s more risks: as soon as I’m upright, I want to put the bedroom back in order instead of looking like a sick room and, as soon as I see the mess that’s accumulated downstairs in my absence, I want to tidy the whole house. I did a bit of cleaning around the food prep area while making breakfast and the way it floored me and left me aching profoundly says it all. I’m still having the occasional coughing fit and my chest is still sore. There’s really no kidding myself I’m through this yet.

The risk of overdoing it is very great if I start to believe that being downstairs means back to normal when really it’s just about having a change of scene. I can see I’m going to have to be very strict with myself today and, if I start to override the rules I’ve set myself, I will have to go back upstairs for part of the day.

I know from previous post-viral phases that I’m facing days or even weeks of steady pacing ahead and probably not even stepping outside the door for the smallest walk until there’s a genuine robustness back in my system. That movement begins with gentle recumbent muscle flexing and engagement from the bed or sofa, just to get circulation moving and to activate my core so I can start to stand up for longer. Patience, which is not my middle name, will have to come into it, in spade-loads.

And something I’ve really noticed over the course of the weeks is how my chronically hypertonic muscles have relaxed. It really has been like living in the more comfortable version of hypermobility I knew when I was younger, where I can curl up however I like, cat-like, because nothing much is being held in that awful always-on kind of muscle tension of my ordinary active life. I wonder how long that will last once I’m up and moving again. It’s something my physio and I are slowly working on together: training the more appropriate muscles to do their job again so that my default isn’t always to hold tension in the movement muscles.

So I’m lying here on the sofa trying very hard to remain in this comforting vein of self-regulation and calm, of “no need to rush”, of staying present with my body sensations and my appreciation of all the little things going on around me…spring sunshine breaking through early morning cloud, those daffodils in a vase zinging their vibrant yellow into the room. This, instead of submitting to the usually all-pervasive procession of preoccupations and subtle anxieties in my head, the sense of always having to remain poised and ready to shoot things that need tackling down as they appear one by one over the horizon of my morning.

If there’s one thing I need to hold onto from this latest illness it’s this feeling of steadiness and of being let off the hook, without any need to brace or hold the breath in readiness; of being allowed to exist without having to constantly strive, to push, to make things happen, which has so long been my default position. I don’t know when I last spent such a genuinely calm and regulated few days feeling like this and I intend to hold onto the feeling. When I press publish on this post later today, assuming I do, it won’t be the perfectionism project it usually is and there’s no rush, no obligation. If it ends up being tomorrow or next week then so be it.

In fact, its no overstatement to say that I’ve experienced something quite rare for me this week; not only experienced it but imprinted it into my body memory so that I can recognise what it feels like when I get back to it again…the kind of stillness that persists, not because the world or outside circumstances are always ideal but in spite of whatever they are being right now.

I achieved something like this once before, for quite a sustained period, when I first got into mindfulness practices. It was a turning point around five years after my original health crash. I had been “off work” for all that time and yet never really gave myself any slack, always trying to justify my existence and keep productively busy every day, and still I couldn’t get out of my health rut at all. It was a kind of half-life of endlessly crashing back into symptoms and flares that kept getting longer and deeper each time. In many ways, I was even more fatigued and symptomatic, more defeated by the constant stopping and starting of things, and the frequent interruptions and cancellations caused by untimely exhaustion, than when I first stopped working.

Then I discovered mindfulness and began meditating, and not only in the sitting down sense, which I really struggled with because it was so hard to sit for more than a few minutes and quite impossible to still my mind. Because I turned my daily walks into meditation, or did it just by sitting in the garden listening to the birds, paying attention to things with my eyes or my camera and even through my regular painting practice, which was certainly a kind of meditation in its own way. And I prioritised it as an essential part of my existence, not just some minor subplot that could get sidelined when I got too busy. I made regular time and space for it and protected it as something essential for my wellbeing, not as something negotiable.

Over time, my system became calmer, my thresholds got higher, the crashes less severe, a state I maintained for quite some time because I realised the importance of stillness to a body and mind that defaults to excessive movement. It gave me back some of my health and I had a much better few years, not because of “spiritual beliefs” (I’ve written about my mixed experiences with those before) but because of the self-regulation I was able to maintain.

I drifted away from it around the point when everything crescendoed into a perfect storm of stress again; I lost my footing exactly when it mattered most and the steady floor I had found for myself gave way. And because it had “let me down” once, I kidded myself it had been nothing; that I had probably imagined all its positive effects. If I’m honest, I became bitter and cynical because a friend that had also been using mindfulness to manage an illness (she had cancer) died and I told myself, at some level, that it had let her down too, even stopped her from fighting her illness enough although, in reality, the odds were always stacked against her and her mindfulness practice supported her more than anything else. The long slow grieving process of my loss when she died took a long time surfacing the truth of that and I am finally starting to get it.

And it was all too easy to tell myself I was never any good at it; that I could never manage to meditate the accepted way because my mind wouldn’t go still or I would constantly self-sabotage. The perfectionist in me shot holes through it, glossing over all the many benefits it had given me.

This time I have better odds, less extraneous factors, more wisdom and self-awareness including the belated understanding of my own built-in AuDHD trip wires, which I didn’t have before. Last time, when I failed as I saw it, I slipped back into blaming myself. This time I get to work with my actual neurology, informing everything I do, including the admission that sometimes I do need some stimulation, I do need to allow some hyperfocus and some information dumping, some intensity and some hot pursuit of ideas that truly excite and engage me. But that I also need to breathe, to find some true centre and enduring stability, to let go of the guardedness and bracing when I really don't need them switched on, to prioritise rest and respite and give them all the time and space they need to actually happen, to stay present and listen to what the body wants — and not only when illness makes me.

Something that hasn’t been discussed at all so far is how my ADHD plays into the dysautonomia pattern I keep writing about. Here’s a perfect example from my week. At the moment I’m sleeping separately as my husband has a bad cold and part of me feels liberated by this, as I am sure some of you can relate to. Though I love him to bits, I really miss sleeping in my own space, especially when nights are hot and disturbed. Also because being let off the hook of shared bedtime arrangements feels like liberty to a personality that has years of track record of being dominantly nocturnal in my habits, in spite of the fact this no longer works with the requirements of my chronic health.

I certainly slept much better the first night but there’s more to it than that, because sleeping separately also allows me to revert to form since I don’t have to rush to bed at the same time as him so as not to disturb him. Whenever this happens, and it’s rare, I get a visceral flashback to my misspent youth: grazing around the house, staying up in my room doing things (whatever my latest fixation was) till well into the early hours, sleep reduced to a series of cobbled-together naps between which I’d wake for snacks, to read, to resume the chase. For years I assumed this was simply how some people were (my mother was not above mopping the floor at 1am while the rest of us slept), and it only gradually dawned on me this wasn’t quite as universal as I’d imagined.

It was only when I learned about ADHD that I found myself in so many people’s descriptions of this fractured nocturnal relationship with sleep, which has inevitably come at a cost as my health picture became more complex, forcing me to override what is in effect a natural impulse to be more nocturnal. Rereading my teenage diaries lately, I’m left with the impression that it’s a wonder I was ever functional enough for school after such nights, but it was a way of life to me when I still had the stamina for it.

So on Thursday night I got into a massive hyperfocus in the evening rather than settling down to my usual calming TV programmes, which I usually make use of for predictable self-regulation before bed. Instead, I got a bee in my bonnet, out of the blue, to get on with the project of replacing my bedroom blinds, which I inherited with the house when we moved in over two years ago and which I loathe for being so grey and shiny; literally the colour of a drab rainy day fringing my view from the bed.

So I plunged into researching fabrics online and the harder it got, hunting down the precise construct of the “perfect fabric” I held in my mind’s eye, the more my dopamine got pumping from the effort of it. In fact the challenge itself can be the very thing to provide the dopamine more so than the outcome of getting anywhere, as I know from track record (I love nothing more than to get stuck into a near impossible challenge; this was the basis of my more successful career efforts in the past and you could say living with chronic health has been the biggest of them all). The more confounded I got, since the challenge wasn’t only to find something I liked but something that won’t clash with my wallpaper and bedding, the less I was able to put it down and I was still battling with it well past midnight.

Begrudgingly, on seeing the time, I eventually moved upstairs but then continued scrolling fabric options in bed on my phone till long gone 1am. Bearing in mind I usually go to bed around eleven, this was a very late night for me and I already knew I had overdone it before my head hit the pillow.

So of course my brain wouldn’t settle. The high-wired state almost hurt, still spiralling in my dreams, which were fuelled by themes of searching and sorting, a sort of futile quest for a needle in a haystack. There was a manic quality to it, a momentum and a relentlessness. An “I can’t put this thing down come what may” energy, even though I wasn’t thinking about fabric anymore, but it was the rhythm of chasing something, of refusing to give in, like my life depended on it, my brain refusing to step down and claim some rest, to believe it had permission to do so. Years before I even realised I was ADHD, when I simply attributed these backlash episodes to being more sensitive to overwhelm than the next person, these brain storms would hugely perplex me but I tried so hard to see them as tenacity in action. In other words, I worked at reframing them as a kind of strength built on determination, a refusal to be beaten, even in my sleep…until the point they became desperately unhealthy, pushing me to the very brink of burnout again and again.

But why, right now, had this trivial-sounding project become such a fixation, a drive inside of me, the same way as almost any internet shopping or online research escapade can quickly turn into a do-or-die impulse, a rabbit hole I get lost in? Looking back the next day, I realised it was acting as a sort of dopamine buffer, a stand-in for something else. Because I’d been pacing myself, for weeks, for a massive, much-earned dopamine high the following evening: going to a favourite dinner jazz club with my brother and his wife, two of my favourite people (not seen since the end of last year), to listen to some live music, which I adore doing. This is exactly the kind of trip out that is a very big deal for me due to my health and autistic considerations and which therefore rarely happens these days. It would have been my first social trip out in the evening for months and first live music since the end of last summer.

Such an event not only takes weeks in the strategising: how to get there, ensuring my usual seats in a less stimulating spot are reserved, thinking through all the sensory and food logistics and so on. And because it will inevitably take massive energy and require a full recovery process, I have to pace myself for weeks beforehand and then plan for a complete wind down afterwards, clearing the decks of my diary. If it should happen to come off and go well, it’s only ever because I have given it this kind of intense focus in the weeks ahead and the good parts are always extremely hard won from all the efforts I’ve put in, preserving energy, pacing and preparing myself mentally and physically for ages beforehand.

It’s like I’m having to save up coupons of stamina and resilience from all corners of the rest of my life to “buy” this one event and then keeping everything else to an absolute minimum of stimulation so that I have the resources to cope, all of which mental and physical preparation can take weeks in the making. Effectively, I had been reverse engineering my whole life backwards from this first music gig of the year since I first bought the tickets back in January and every fibre of my being had been held in a state of torsion in expectation of it happening, especially this past week. The worst of it was that I felt ready for it by the time the day was upon me; my plan had worked, things were looking steady with my health after a rocky start to the week and I was absolutely poised for launch day.

And then my husband came down with his fluey-cold thing. By Thursday, it had become obvious we would likely have to cancel and by the evening, the point when my manic fabric hunt took over, I was still in that state of uncertainty but things weren’t looking good. As the reality started to hit me the night before, I realised I was gutted, frustrated, even angry at circumstances that were outside anyone’s control but which had seen fit to make my hard life even harder. It seemed so unfair and my mind was already starting to spiral on this point. In fact I could sense myself starting to proliferate on all the unfairness of life with chronic conditions and how often I have to surrender the very things that bring me most joy.

What I can see now, looking back, is that the dysregulation this was already triggering in me had become its own springboard; when my system gets that destabilised, it so often launches me straight into one of these dopamine-seeking projects as a way of coping with the feeling.

And then there was also the problem of all that energy I had stashed up ready for the outing itself. I realised I had been drip feeding myself just enough adrenaline to get through it for days, acclimatising myself to the feeling of it. So now it was like I was the person stood by the door with their parachute on and then the flight is suddenly cancelled and I have nowhere to go with all that adrenaline. A bit like when I mobilise adrenaline to stand up during a bad POTS flare, a topic I wrote about last week (which then uses up all my resources for later), the overshoot leaves me with a surplus that feels like I have extra energy at the time…energy that now has nowhere else to go.

What took me a long time to understand, and what I now try to explain to others, is that a late cancellation doesn't return those coupons. The preparation has already been spent. In many ways the hit to my system is almost as great as if I'd gone.

So then it feels like I have to urgently find myself an outlet, something I can point my surplus adrenaline-energy towards (this isn’t real stamina in the sustainable sense), or it risks recoiling back inside of me, leaving me feeling like I’m going to explode from the distension, like after gorging an over-heavy meal. It’s the same reason I’ve been known to come back from some social event and run round the house with the vacuum cleaner or manically cleaning up the kitchen straight afterwards, though I am utterly tired out and it could all wait till morning; like I get the zoomies because I won’t be able to rest until I’ve got all that surplus adrenaline out of me before bedtime.

Having promised dopamine to myself, I guess my brain was claiming it wherever it could find it and the fabric project just happened to catch its eye. There was some sort of rebellion in it too; if one of my pleasures is about to get taken away from me, I’m going to make my own and it could have been almost anything at that point but the blinds happened to be the thing.

Although it was really far more to me than the fatuous project it might sound because, having spent all winter long trapped in a body that seldom felt well enough to go out, staring at those grey and sombre blinds every morning when I first awoke (it’s been such a cloudy few months), they had really become much more of a symbol of my own stuckness than a mere annoyance. In fact they were the same blinds that had framed my view during the long months I was mostly housebound through the long haul of long Covid when we first moved in here; so, yes, I have had to stare at them for many more hours than a person should ever have to stare at anything they didn’t choose and had plenty of time to decide they weren’t enhancing my view. They aren’t quite so bad in summer but, when the sky outside matches their colour, they only amplify the feeling of stuckness and of some sort of heavy grey blanket overlaying everything.

Lying there on that first morning in bed without my husband by my side, I think the penny finally dropped that if I could only frame that view with something redolent of springtime or summer meadows, of something life affirming and hopeful, I could cope far better with next winter. This was why my mission felt so imperative; a version of “well if I can’t get out of here, let’s at least make this place better”.

Problem being that when these highly intense dopamine splurges happen they’re so tough on my health, added to which lack of sleep is the very core problem when managing chronic health, with effects that spiral into every symptom group. So I felt desperately dizzy and dysautonomic the following morning, with that nauseous version of POTS that takes it to a whole other level even before I got out of bed and persisting for the rest of the day at every mealtime. Like a kind of seasick feeling combined with brain fog, this version is like some sort of sensory hangover, the remnant of a system that has been highly over-amplified for hours.

Here’s the tough bit: I already know I can’t cope with the slightest bit of overexcitement, that even good excitement can do this to me and yet…irony…in this case I had effectively done it to myself. I had opened the stable door and allowed the race horse to gallop itself into quite a sweat and I had encouraged it on. For years before realising about ADHD, I would then become consumed with self-blame and remorse when the after effects came to smack me in the face, like I had done it to myself willingly and knowingly; not that I had been carried away on some impulse that I could barely contain at the time. Even now, it’s very hard not to turn the tables on myself and think that I deserved all this because I caused it but I try to have more self-compassion these days. To focus on what I can learn from it and what can be used to preempt and divert such episodes in the future.

And yes, I’ve found out since, there were also environmental factors fanning my flames, as there often are: Thursday night brought strong winds and what, in hindsight, turns out to be quite a sharp upsurge in the kind of space weather variables to which I am highly sensitive and which I’ve written about before. Kp-index levels first started to elevate around the same time I had the first sudden urge to go off on my project that evening and continued on intensely overnight and well into the next day.

Why this matters for my system specifically is that geomagnetic activity affects the same pathways that are already dysregulated in dysautonomia and MCAS, being baroreceptor sensitivity, vascular tone, mast cell reactivity, and the vestibular system. It’s not fringe science, there’s reasonable research behind the correlation, and for someone whose threshold is already close to the edge, a sustained Kp spike like this is exactly the kind of invisible environmental load that the compensation phase masks entirely until the bill arrives later. The fact that I felt the excitable-brain quality kicking in first, before knowing about the spike, is key (it didn’t even occur to me to check space weather sites until the following evening as I started to come down from it).

That prodrome, by which I mean the particular flavour of mental activation that whips me up into a sort of frenzy like autumn leaves caught up in a vortex of wind before abruptly dropping back down to earth again, is something I make effort to notice and log these days so I notice the signs coming in a way that can be preemptive rather than reactionary after the splurge has done its worst with me.

Certain traits and signs, such as a sudden new hyperfixation on a project that hadn’t even occurred to me an hour earlier, plus the belief I am invincible enough to sustain much more than usual (which is that false feeling of capacity that adrenaline typically imparts to my activity hungry brain, which is all-too eager to believe the improved forecast when this happens) can be some of my earlier warning signs, appearing before the physical cascade becomes obvious, prompting me to take care.

Too late this time, however, as the perfect storm of being left to my own devices at bedtime combined with the disappointment and energy overhang of the cancelled event, plus some provocative environmental factors, had well and truly got me. Like having gone off on a sort of binge, the effect was so similar to when I used to binge drink alcohol back in the day; oh yes, it all feels wonderful at the time and I think I’ve got it well under control but then I’m left with such a hangover afterwards.

It took the whole of that following day to get over it; this hangover of the ADHD variety, watching how it played out in my dysautonomic health with the wonderful hindsighted clarity of one who has been tracking the patterns for some time now. I spent the whole next day over-amped and a little bit vague about where my brakes were; overdoing things whenever left unchecked (not helped by my husband still not being with me to give me the warning nudges I rely on), my brain somehow unable to go back into its usually quiet box but always on the look out for that extra yard of stimulation. Except, I couldn’t because the body had already stepped in with its various ways of stopping me. In many ways that I’ve come to appreciate, dysautonomia is its own makeshift version of those very brakes that I lack.

I remained in that nauseous sea-sick version of POTS for hours; the kind that would have perplexed me years ago, trying to attribute it to diet and such, but now I see it as all part of the picture of a nervous system that had been caught up in a sustained autonomic activation. I was now well and truly in the come-down phase and it left me feeling as though my wires weren’t in quite the right sockets or as though some of my switchboard had melted from the intense surge of the night before. By evening, I was ready for a bath and early to bed with my intense post-surge headache and all-over body aches persisting, which was no real surprise. My body had been running on stress hormones and vascular compensation all day and, like any toxic load, was now clearing them out.

But at least my brain had started to calm down and I was feeling more steady; also far less interested in hunting down blind fabric than I could have ever believed twenty-four hours earlier when completely hung up on the topic (that turned out to be just a vehicle for my frustrations at the time and, though my research may still prove fruitful, I feel far more circumspect about the timescales of getting the project done).

The way I interrupted it, the way I self-soothed and self-regulated my hungover nerves, was to write about it; to write this. By getting this new layer of clarity off my chest in the freshness of the aftermath, compelled by the inspiration I always seem to have, these days, to track my traits, observe the patterns, grow my awareness and foresight so I can manage them better, even when I can’t necessarily change them or the way I am wired.

I wake at 4am and my watch tells me what my body already knows: that even in sleep, I haven’t really rested. The stats confirm it, poor recovery, poor relaxation, a nervous system that never quite stood down. And the thing I’ve come to understand, slowly and only recently, is that the pain and the wakefulness and the anxiety aren’t a chain of cause and effect, one triggering the next. They’re the same thing. They’re a nervous system that doesn’t feel safe in the world, expressing that single fact in every language available to it at once: in braced muscles, in shallow sleep, in a body that has been quietly preparing for threat all night long. It’s one thing to know I would do better not to brace, to relax and let go, at least in the sleeping hours. It’s quite another to achieve it when the bracing isn’t a choice but a baseline state.

The reason my nervous system operates this way is that its default setting of low-grade vigilance runs deeper than circumstance or temperament. A large part of it is structural, written into my connective tissue. I am hypermobile, which sounds, to those unfamiliar with it, like a straightforward advantage: bendy, flexible, loose-limbed. But hypermobility is not simply a range of movement. It is a systemic difference in the connective tissue that holds every joint, organ and blood vessel in the body together. When that tissue is laxer than it should be, the joints it supports are also laxer, moving further than they’re designed to and sending back imprecise, unreliable signals about where they are and what they’re doing.

And it’s worth being clear here that this laxity isn’t only about muscles and joints, though those are the most visible effects. The connective tissue that is too flexible in hypermobile Ehlers-Danlos syndrome runs through everything: the fascia that wraps and separates every muscle, nerve and organ; the walls of blood vessels; the ligaments that hold internal organs in place; even the very thinnest and most peripheral tissues of the body. Fascia in hEDS can become thickened and lose its normal ability to glide freely, which in turn compresses the peripheral nerves that run through it, producing the burning, tingling, numbness and strange localised pains that many of us experience without being able to explain where they’re coming from. This compression can also create trigger points, areas of concentrated muscular tension that refer pain to other sites; it can reduce local blood flow; it can interfere with the metabolic exchange that tissues rely on; and it contributes to the kind of fascial pain that seems to have no clear origin and yet is everywhere at once.

Small fibre neuropathy, damage or dysfunction to the tiniest nerve fibres that carry pain, temperature and autonomic signals, is now recognised as common in hEDS, affecting the majority of those tested for it. This is why odd sensations in unlikely places, the scalp prickling, the skin of the forearm burning for no apparent reason, a toe that suddenly feels numb for an hour, are not random or imagined but part of the same underlying picture. The whole nervous system is running in compromised tissue.

In my own body this shows up in ways I’ve lived with so long I barely noticed them as connected: years of TMJ pain, that particular jaw-aching tension I find I’m holding without realising until I check; chronic neck pain with enough laxity at the top of the spine to cause nerve entrapment around the head and skull that generates its own considerable range of pain and sensory disturbance; low back pain and pelvic instability significant enough that I rarely leave the house without an SI belt to hold my pelvis together and have had to rely on a neck brace for car journeys at my worst. These are among the most common sites of chronic pain in hEDS: the neck, the lower back, the pelvis and the jaw, because these are regions where laxity and the compensatory muscular effort required to stabilise it creates the most sustained demand. Everything is connected, and none of it is coincidence.

The flimsy way hypermobile connections are made affects everything about the quality of feedback your nervous system gets, and this becomes its own reason for great overwhelm and uncertainty, because there’s always so much going on around you and yet, crucially at some very key moments, not enough positional feedback being received either, leaving your body very uncertain of its place in space.

Underlying all of this is a question the nervous system never stops asking, in every waking moment and apparently in sleep too: am I safe? It runs this check continuously and it does so through four main channels: vision, the vestibular system in the inner ear that governs balance and spatial orientation, proprioception, and touch and pressure input from the skin and joints. These four together are what allow a nervous system to build a reliable map of where the body is, what the environment is doing, and whether a threat response is required. When any of these channels is unreliable or overwhelmed, the nervous system doesn’t simply note the gap and wait. It interprets unreliable information as potential danger and responds accordingly.

When it’s not sure about the outer environment, the default mode of such a body seems to be to tighten everything to the point of rigidity as a way of creating certainty in an uncertain world. This is bracing, or in clinical terms, guarding: not a decision but a reflex, the nervous system splinting itself against a world it cannot quite read. When balance is poor, when proprioceptive signals are weak or garbled, when the body cannot reliably predict what the ground will do or where its own edges are, this translates directly into higher muscle tone, clenching, shallow breathing and reduced range of motion. The body is putting on its suit of armour, and it does this not out of malfunction but out of a completely logical, if ultimately counterproductive, attempt at self-protection.

The only trouble being that this high certainty the body achieves through its efforts, in lieu of adequate feedback, being the certainty of stiffness and pain, is the very definition of a chronic pain condition. And here it’s worth saying something that isn’t always understood: pain in this context isn’t necessarily a signal of damage. It’s a signal of danger. The nervous system uses pain not only to report that something has been injured but to warn that something might be. In a system that is already primed to read uncertainty as threat, that warning threshold gets set very low, and the result is pain that is entirely real, entirely debilitating, and not reliably connected to any tissue injury that a scan would find.

Night after night of waking at 4am wired yet tired with a body that hurts for no apparent reason is my normal state of affairs. Not a very easy situation for a nervous system to make do with as its day after day normality, but those of us with chronic conditions know all about this kind of certainty. The expectation of repeated symptoms becomes its own kind of structure as it turns into a life.

And winter brings its own specific pain that sits alongside the structural stiffness rather than being caused by it. Fibromyalgia, which I had a diagnosis of long before I understood hypermobility or neurodivergence, has a different origin to the bracing-induced rigidity I’ve been describing. It involves a process called central sensitisation, in which the nervous system’s pain pathways become amplified, turned up too high, so that sensations which shouldn’t be painful are, and those that are mildly uncomfortable become severe. Part of the mechanism involves a neurotransmitter called substance P, which is found in elevated levels in the cerebrospinal fluid of people with fibromyalgia. Cold activates the same pathways as pain at the level of the spinal cord, and substance P sits at the crossroads of both pain signalling and temperature regulation, so cold doesn’t just tighten my muscles and compress my nerves, it chemically amplifies pain signals at the same time as making it harder for my body to generate heat. The result is a particular kind of winter suffering that goes beyond the structural, a pain that is woven into the nervous system itself rather than located in any single muscle or joint.

And the thing is, especially in warmer seasons, I might very well have moments in my day when what felt like a highly paradoxical lack of bracedness or pain occurred, because my hypermobile body is no less accomplished at producing paradox than is being AuDHD, or so it seems. In fact I often feel the two things are related. Hypermobility and neurodivergence, particularly autism and ADHD, co-occur far more often than chance would predict, and I’ve come to think this is no coincidence. Both involve a nervous system that is differently calibrated to the world, processing more input than average, struggling to filter signal from noise, swinging between overwhelm and underwhelm in ways that can look, from outside, like inconsistency or even fabrication.

A hypermobile body can also feel like the ultimate in flexible and fluid, capable of going to end range when it comes to movement. This constant swinging back and forth between extreme symptoms of stiffness and fluidity, not to mention agonies then sudden reprieve, is one of the main things that can make these conditions seem doubtful to the casual observer and to doctors. How can we be as bad as we say we are if we can sometimes seem magically recovered for a few hours or even days at a time? When we’re assessed for being hyper-flexible and then claim to be so rigid we can barely put on our own socks in the morning, how does that register as truthful to those that don’t understand (the fact I could touch my toes is the very reason my fibromyalgia got dismissed as “not that severe” by the first consultant I went to)? Suddenly we’re being accused of an illness of the mind or of exaggeration.

And here is where the pattern becomes its own trap. The natural inclination of a hypermobile body is to move a lot and go for those end-of-range extensions, using momentum to keep on going. Lately, I’ve come to realise just how much of my seeming capacity, my hyperactivity and the way that, once started on something, I tend to keep on doing it for much too long, like I’ve lost all sight of my brakes, is in a sense an illusion achieved through the way I’ve come to rely on that bigness of movement and sheer momentum. Something like a runaway cart down a hill, the only way of stopping is to crash.

So it can appear like I have real power and capability, but it’s driven by adrenaline not steady fuel that sustains. This is the boom and bust pattern that anyone with chronic illness will recognise: the good day capitalised upon until it tips into the bad week that follows. My runaway body is really no different to my runaway AuDHD brain that thinks and thinks until it’s eventually worn out, and at a certain point something has to give.

So I’ve learned that just because I can doesn’t mean I should, and that end-range movements without core strength are the worst combination to live by, leading to constant relapses back into rigidity and pain. The better tactic is to learn how to make small, controlled movements at just a fraction of what I’m capable of until proprioceptive acuity improves. Real strength is based off control, not capitalising on that runaway force some of us have inside us, which eventually overstimulates and wears us out. I do have more strength than I think, only it’s being channelled through the wrong muscles, and it’s my job to retrain them.

All of this patterning becomes most visible to me in the transition between seasons, specifically the arrival of spring, which is why I want to use it as a case study in how this nervous system actually behaves in practice.

There are some obvious reasons why pain and rigidity get worse at certain times. Cold conditions over winter being one of them, causing the body to brace almost against its will, increasing muscle pain, reducing blood flow and causing nerve entrapment. Yet to me, winter, once it has properly settled, can provide a kind of perverse stability that my nervous system actually prefers over the alternatives. Cold causes blood vessels to constrict and withdraw from the skin’s surface, reducing that layer of sensory information, and yet the muscles stiffen and brace in compensation, creating their own rigid kind of feedback. There’s also something happening at the level of atmospheric pressure, though not in the simple way you might expect. It isn’t that winter brings reliably high pressure that stabilises hypermobile joints, because that isn’t always true. What matters more is pressure consistency. A long run of low pressure, as I’ve experienced heavily this past winter, causes its own prolonged bracing as the body compensates for the tissue expansion and joint instability that lower pressure brings. Then when pressure finally rises, that compensation is suddenly unnecessary and the body overshoots into laxity and POTS instead. I’ve felt exactly this shift in recent weeks. The problem in both cases is the same: my nervous system is working hard to offset whatever the atmospheric conditions are doing, and when those conditions change, it overshoots. What pressure seems to offer, when it holds steady at any level long enough, is something the hypermobile body rarely gets: a consistent external variable it can finally stop compensating for.

So what my body seems to object to most is not cold itself but the fluctuation, the indecisive weather of early spring that swings between temperatures and conditions before committing to anything. My routines in winter are small and replicable, my sensory profile highly predictable day to day, and the autistic part of me, though it pays for this in increased musculoskeletal pain from the cold and the fatigue that can deplete me before I’ve done much with my day, actually draws a kind of stability from that predictability. It’s the variation it cannot cope with.

As is happening today after a spring-like couple of days this week: when cold does return after a period of warmth, it hits differently than the cold that has been building all autumn and winter. During the long accumulation of winter, the body braces itself gradually, incrementally, building its compensatory muscle tension as conditions worsen by degrees. But after a warm spell has loosened everything, softened the joints and released some of that protective tension, a sudden cold snap finds the body unprepared, its defences down. The bracing has to happen all over again, faster than before, from a starting point of greater laxity rather than established stiffness, and the contrast is sharp. It’s not the same cold but rather the kind that arrives as a shock rather than a continuation, and the body reacts accordingly. Choppy weeks of conditions that come and go, warming then cooling, can be the very worst for this kind of body, as I’ve experienced so badly this early springtime.

In the moment of a warmer day, the kind of muscle release that a bit of sunshine can bring (and I’m well aware that it’s more than just the effect of warmth since the very mood-lift it brings can be a big part of it, fuelling dopamine to a hungry system) can feel highly pleasurable, especially in contrast with all the rigidity and pain that preceded it. Yet, by now, you know just how temporary this is likely to be. The sense of reaching a pleasurable interlude only adds to the wholesale appreciation that can lead to an urge to dive right in and make the most of it, throwing caution to the wind.

Added to which, on the most lax spring days, there’s a particular quality to how my body feels that I’ve come to think of as jelly that hasn’t set. Not fluid exactly, not solidified either, but somewhere in between states, too precarious to be relied upon, as though the structure of me is in transition and hasn’t decided yet what it’s going to be today. I can see it as well as feel it: knees that track in multiple directions when they should only go one way, joints that feel as though they might tip past their range without warning. Even my skin softens visibly on these days, to the point where clothing and bedding leave their imprints on it for longer than seems normal, a small proof of how much the tissue has let go of its usual resistance.

It’s a state that looks like freedom from outside and can feel like it briefly, but these clues hint that the urge to launch into activity on such a day is premature. What this body needs first is a setting phase, a period of adjustment before the looseness consolidates into something that can actually be trusted. Rushing that phase is exactly how I’ve ended up in the worst crashes. And when I look back across the years, these transitions in spring and autumn but most especially during the softening into warmer months coincide with some of the worst crashes and setbacks, because they are exactly when I tend to misjudge what I should be doing with my days, getting it wrong to the point that I’m sometimes left paying the price weeks or months later.

Because it’s very hard to resist the pleasures of a hypermobile body when they revisit even briefly, a reminder of what life used to be like before hypermobility became symptomatic and simply was as a sort of youthful bonus. It’s like being a ballet dancer or gymnast; suddenly your body is bendy and playful and feels highly adaptive to the environment, fluid and flexible, capable of moving in alternative directions to standard bodies. Impossible for me not to regard it as neurodivergence made manifest in flesh.

But the liberation of a looser body is also a navigational crisis, and this is where proprioception comes in. Proprioception is the sense that tells us where our body is in space: the angle of a joint, the pressure under a foot, the subtle resistance in a muscle that says you’ve reached your limit. It’s the system that lets you touch your nose with your eyes closed, or catch yourself before you stumble. In a hypermobile body, proprioceptive signals are inherently weaker and less reliable, because the joints themselves are less taut, generating less mechanical feedback with each movement. The nervous system is, in effect, trying to navigate with a GPS that keeps losing signal. And recall those four safety checks: vision, vestibular, proprioception, and skin pressure. When warmth brings lighter clothing, laxer joints and an unfamiliar environment all at once, two or three of those channels are compromised simultaneously, and the nervous system, asking its perpetual question, finds it cannot assemble a confident answer.

As soon as the body becomes more lax, there is even less sense than usual of having boundaries, even less feedback from the environment reminding you of your position in space. Space becomes this very abstract thing and you sort of mingle with it, so much so that I sometimes lose sense of my own legs or where they touch the ground on such days. Somewhere between flying and almost dreaming my way along, like I left my body at home, I can be left wondering how I even got from A to B, like I was a floating head experiencing it all through ears and eyes and leaving skin at home.

Looking back, I realise I spent so much of my life feeling like a sort of bobble head, a brain that floated around, highly cerebral, my body this seldom considered thing since early childhood when the bumps and bruises of youth kept it in the picture. This first became problematic around perimenopause when I would suddenly lose sense of my legs mid stride or have to stare fixedly at the ground on my walks in order to remain balanced. The first few times it happened, it was so disconcerting, but it eventually became a version of normal to have these sudden shifts in and out of body awareness, moments that were at once unfamiliar and yet also too intense, too sensory in their feedback, delivered in an erratic, overwhelming way that was increasingly associated with pain and fatigue. It turned out I simply hadn’t developed the same awareness of my limbs as maybe other people get to rely on, and suddenly my body was shouting at me, but not all the time, vacillating with periods of dissolving into the background again, leaving me even more discombobulated.

Then what does come in at skin level can be too much, too bewildering, like overload, a sort of bombardment that confounds interpretation. Combined with the kind of clothing changes made to adapt to the season, there’s not even the reliable feedback that comes from wearing heavier and tighter layers anymore as soon as summer comes along. Thin coverage means even more bombardment of sensations and even less clarity of feedback to tell me where I am relative to anything else. It’s a lot for a hypermobile nervous system to have to adapt to all at once when warmer days finally arrive.

This is where my neurodivergence compounds the picture. Already challenged proprioception is part of my autistic experience, a body that has always struggled to process positional information cleanly or consistently. On these days of sudden warmth and laxity, that challenge becomes acute. My nervous system is probably panicking at how much I’m already overdoing it, hyperextending, pushing through without all the usual pain signals telling me when to stop. More than that, it’s disoriented through losing sense of itself and where its edges lie. Sometimes its effort to refind those edges seems to involve extra contraction, sudden concerted spasm, the kind of abrupt tightening that screams pain as a sort of compensation for lack of feedback.

Instinctively, I start to lean into anything that can give me an improved sense of where I am in space. When my husband gets summoned to help me up from a lying position, it isn’t always that I can’t get up through lack of strength. It’s that having him there prevents me from making the movement too big, too fast, recruiting the wrong muscles and risking injury in the process. When I take walking sticks out with me (I now routinely use Nordic poles on my walks and a walking stick everywhere else I go), it’s primarily to give me added feedback as to where I am relative to the ground, extra information for legs that can sometimes feel as though they stop at the knees, not always because I need to lean on them for support. These aren’t admissions of weakness. They’re proprioceptive tools, practical adaptations, ways of feeding information back to a system that is already having to work too hard to navigate due to not having enough of it to reach confident decisions. It can genuinely reduce my fatigue, by the end of the day, on the days I actually accept the help or use the sticks rather than insisting I can manage without.

Pain itself becomes a protective aid, a border control sentry warning me where I’ve reached my limits and the rest of the world lies. No wonder it can feel like pain cuts me off, isolating me in a locked experience which nobody else can relate to and which screams its reality at me like an alarm constantly alerting me that I’m getting too close to the edge. In proportion to how little feedback my kind of body naturally generates, pain provides the friction points, the loudly shouted information as to when I’ve reached my limits, and those limits are miles off how wide I would prefer them to be, like a straightjacket, keeping all my movements small and extremely limited. Only, with typical autistic lagginess, those sirens don't necessarily sound out in the moment but hours later, so that managing in summer becomes less about responding to pain and more about predicting it — reducing movement before it hurts, trusting what experience has taught me even when my body is telling me it feels fine right now. And when I don't listen, when I override that hard-won knowledge because the day is too good to resist, I pay for it in full. Again and again and again.

So those very days when I’ve felt most at liberty to finally enjoy some semi-normal movement outdoors tend to be the ones where I’ve ended up in severe pain later. A pleasantly mobile day, almost forgetting about chronic pain, can be followed by a night of muscular hell, unable to sleep because of the extreme rigidity that comes in to overcompensate. Even sensory factors, new or less familiar feedback such as sun on skin, wind on face, anything additional resulting from the newly expanded ways you tend to spend your time when warmer weather opportunities come along, can be enough to trigger a reaction.

In fact, sensory overwhelm, even the most subtle kind, can be one of the most likely things to trigger a backlash of rigidity and pain in my experience, and often not in the moment it occurs but again occurring hours later. It’s like a delayed reaction, a sort of strategy of prevention motivated by a nervous system that has become deeply wary of being put through even more sensory newness a day later, struggling as it is to make sense of the first dose. Before you even have the chance, you’re suddenly back on the sofa of recovery, floored by something so gentle you can hardly believe it to be true. Yet I’ve learned the hard way, over the last few years, that I have to drip-feed such things into my nervous system, slowly and cautiously, before I can truly consider myself resilient enough to do those more outwardly focused seasonal things, treating March as a transition month with plenty of rest respites before April brings somewhat more reliability and May a little more again. In fact it can take me a good three months to adjust to the warmth, only then to be knocked off my perch by sudden heatwaves and humidity before the slide back down into autumn.

So just at the point my body ought to be feeling better because winter’s cold weather is finally backing off, it can end up feeling much worse, not for the same reasons but because transition itself is a major provocation. And that transition period can be deadly slow…getting slower still as I age.

So far I’ve been describing all this in terms of the musculoskeletal: bracing, rigidity, pain, the body’s GPS losing signal and shouting its location back through sensation. But the same nervous system dysregulation that produces these responses doesn’t stop at the muscles. It runs through the autonomic nervous system too, the system responsible for all the things the body does without being asked: heartbeat, blood pressure, temperature regulation, digestion, circulation. When the autonomic nervous system is also dysregulated, which in people with hypermobility it very often is, the result is a condition called dysautonomia. One of its most common forms is POTS (Postural Orthostatic Tachycardia Syndrome), a nervous system that fails to regulate blood pressure and heart rate appropriately when you change position or face physical demand. It’s the same underlying story as the bracing and the proprioceptive deficit, the same nervous system struggling to self-regulate in an uncertain world, just wearing different clothes.

I should say that my own presentation doesn’t map neatly onto the textbook definition of POTS, which requires a heart rate rise of thirty beats per minute or more within ten minutes of standing. What I have is a formally diagnosed orthostatic hypotension, alongside what behaves like POTS during periods of transition: between seasons, between temperature zones, between rest and activity, especially when two of those things apply at once. My heart rate doesn’t always spike acutely in the way the diagnostic threshold requires. Instead, it sometimes rises more gradually, and if I don’t stop to sit down at regular intervals, preferably elevating legs, that incremental rise can eventually push me past the point of managing, leading to a severe flare that can take quite some recovery. More often, the problem isn’t that my heart rate overshoots but that my system under-compensates for the demands of being upright, borrowing adrenaline to bridge the gap while the autonomic system catches up more slowly than it should.

The adrenaline borrowing is, in some ways, the worst part of it. It gets me through but at what heavy cost later (a topic I wrote about just recently in another post after a flare-up). It keeps me functional and upright and apparently normal in the moment, which means I can attend a two-hour visit with someone, keep it deliberately gentle, and seem to others and even to myself sometimes to be absolutely fine but then the aftermath is brutal, as I am finding today after such a visit (I hardly slept a wink last night). The adrenaline that propped up my circulation during those two hours doesn’t simply switch off when I get home and lie down. My nervous system is still running on emergency fuel, still amped, still unable to stand down, for hours afterwards and typically overnight. The flare isn’t a consequence of having done too much in any conventional sense. It’s the come-down from the chemical workaround my body has been quietly running all along. This is also, I think, why the 4am waking I described at the start of this piece so often follows days that seemed, on the surface, like perfectly manageable ones.

For the last couple of weeks I’ve been experiencing a severe flare up of POTS and dysautonomia symptoms such as extreme temperature dysregulation and gut motility problems. As seasonal shifts increase and the weather surprises from day to day, especially when conditions haven’t quite decided what they’re doing yet, being really warm one day and bitterly cold the next, my autonomic system gets completely overloaded and confused by all the chopping and changing and defaults to some very harsh extremes of its own.

I can find myself with temperature swinging from red hot to freezing cold, often with a hot water bottle close by yet constantly having to wear a neck fan for emergency regulation when my system gets completely overwhelmed by sudden hot spikes and can’t make adjustments by itself. There is also the sudden dizziness, arriving even when lying down or turning over in bed, and a nausea like car sickness that can hit without warning when I shift position or try to get up too fast. My blood fails to adapt appropriately to gravity: circulation to extremities stalls or becomes glitchy (I also have Raynaud’s, which compounds this), and blood pools to the feet when upright. Not in the highly dramatic way the textbooks describe, but enough so that my head becomes swimmy, my feet and pelvic floor feel like they’re under extreme pressure, my shoes suddenly tight. The pooling can even be enough to cause nerve entrapment in the legs or pelvis region, a sharp or burning addition to an already full symptom picture. Fatigue then sweeps in from all the effort to keep blood flowing and the next thing I know there’s another reason to remain grounded at home, even though the weather is tempting me outside. It can seem desperately unfair.

It’s like my body is urging me to stay indoors and not move until it can figure out what the seasons are actually doing, which seems to be a far slower adaptive task for me than for some. Until my particular nervous system has the measure of the seasons all over again, which can take some weeks or even longer if conditions are highly changeable, it seems quite determined to keep me grounded indoors, and who could blame it, given the circumstances. Even ten minutes sat outside in a sunny chair can be too much for POTS, triggering a flare.

The gut motility side of this deserves its own description because it is both extremely common in hEDS and POTS and extremely under-recognised, even by gastroenterologists who aren’t familiar with this cluster of conditions. The gut wall relies on healthy connective tissue to function, and the autonomic nervous system governs the rhythmic contractions that move food through it. When both of these are compromised, the result is a digestive system that is unreliable in timing, direction and completeness. In my case this shows up most often as delayed gastric emptying, the stomach holding onto food for far longer than it should, so that I can feel uncomfortably full and bloated hours after eating, sometimes with a pain that worsens when I move around, because digestion is still happening in there long after it should be done. Walking, which is supposed to help motility, instead becomes uncomfortable because my gut is still working on a meal from three hours ago.

Then there’s the reflux, which in my case doesn’t announce itself with the dramatic acid flare and sore throat that people associate with the word. It arrives instead as a sour or metallic taste in the mouth, an earache that has no apparent cause, a persistent low-grade irritation at the back of the throat, sometimes gagging even when I’m not eating, a slightly gravelly voice. This is atypical or silent reflux, and it happens when the valve at the top of the stomach is too lax, as it can be in hEDS, allowing stomach contents to migrate upward without the force of the classic acid attack. Motility problems in this context don’t just mean things moving too slowly; they can also mean things moving in the wrong direction entirely.

Seasonal transitions seem to be when this worsens most for me, the gut’s autonomic regulation thrown off by the same environmental indecision that unsettles everything else. I look back and remember countless other springtime bouts of trying to figure out what’s upset my digestion so badly, working through all the possible dietary triggers which, whilst these might contribute, are never all of the story. I think back to countless other nights, like last night, spent experiencing inexplicably intense stomach ache, craving being able to lie on my stomach to create pressure yet risking hyperextension of spine or neck if I do, even getting out of bed to do yogic stretches to try and ease some of the pain.

And of course the standard advice is to elevate the head of the bed to help downward motion, but whoever suggests this has likely never tried it when it only sends pressure and pain into the pelvic region and lower back just when you are meant to be sleeping, or puts added strain into a neck region that already suffers from laxity and is prone to worsened dysautonomia when provoked due to compression of nerves at the base of the head. To avoid unnecessary bracing, my body needs to be laid flat and in neutral when I sleep, so this whole tilted upright posture thing is simply not practical or sustainable. Adding another reason to brace when my body already tends to brace overnight anyway is not a solution but just more provocation.

And this is where the two faces of the same condition start feeding each other in ways that can feel relentless. Because POTS doesn’t just produce dizziness and fatigue. It also produces bracing for its own reasons. The body’s natural instinct when blood pressure is unreliable is to tighten, to compress, to create the muscular tension that keeps blood moving when the autonomic system isn’t doing the job reliably enough on its own. This happens mostly during the day when upright but it can also happen overnight. So here you are lying in bed with every reason to be relaxed, and yet the body is bracing anyway, and that bracing creates pain, and the pain signals threat, and threat signals more bracing. The musculoskeletal and the autonomic are not two separate problems. They are one nervous system caught in the same recursive loop, just expressing it through different channels. Dysautonomia is another part of the equation that is hugely influenced by proprioception, or lack thereof, needing an appropriate amount of pressure from the outside so that circulation can do its job.

What I really need to cope better when upright and outdoors, which doesn’t always suit my inclinations on warmer days, is clothing that gives added feedback to my brain as to where my body is in space. Or kinesiology tape applied not always so much for joint support, though that can really help when lax, as for proprioception, applied to those areas that feel most vulnerable. Doing these things alone can make me stronger and more resilient when out.

I regard it as almost being like a tortoise, taking my habitat with me, only it’s a habitat of my own creating. So compared to when I was younger and thought I loved to go out in shorts and a floaty top (though I look back to some of those times and notice how they so often correlated to episodes when I was most vulnerable and uncertain of myself, with some unfortunate outcomes) I gain a sort of strength from doing this instead.

Compression clothing is part of this, and it works on more levels than it might appear. Yes, it helps with POTS by supporting the veins and reducing the pooling of blood in the lower limbs. But it also works as proprioceptive information, a secondary skin that advises my brain continuously about where I end and the rest of the world begins. That sense of boundary, when you are someone whose sense of physical edges is unreliable, is not a small thing. It can be the difference between coping in a crowded space and not coping at all.

So ironically, if I’m going to the theatre or a restaurant, somewhere likely to be hot and crowded, where lighter clothes would in some respects feel much nicer and allow me to regulate temperature better, I generally need to consider tighter, more coverage-providing clothing that will give me better feedback and help me meet the sensory onslaught. It can genuinely provide more sensory resilience to dress according to rules of good coverage and skin contact rather than wearing little or lightweight clothing that offers no feedback when going out into triggering sensory environments that bombard me with a lot of data all at once. By giving my body those self-created edges to concentrate on, I’m able to block out some of that sensory onslaught and come home feeling more intact.

Contradictions abound in all of this. As someone with POTS who overheats at the drop of a hat, I genuinely like to wear clothing that is thin, breathable and easily removed, and yet many of these support garments aren’t. So it always has to be a compromise, natural fibres over nylon, proprioceptive feedback without being squeezed so tight it becomes a sort of claustrophobia. A bit like how I’m a sensory seeker in my food and yet most sources of flavoursome burst contain the kind of ingredients that trigger my hypersensitive digestion and set off bouts of mast cell activation and POTS, so I constantly have to rein my impulses in and do what is best overall. I have to work to find the happy medium of feedback versus overwhelm, data versus the kind of quietude my nervous system also defaults to otherwise there’s no chance of coping in a dysautonomic body.

Something I’ve come to value as much as any of the tools already mentioned is a consistent skincare routine, specifically a good moisturiser applied all over, and its effect goes well beyond skin health in the conventional sense. The skin is our largest sensory organ and is densely packed with mechanoreceptors, the nerve endings that detect touch, pressure and movement, feeding information directly into the nervous system’s safety assessment. When skin is dry, irritated or compromised, those receptors become hyperreactive, generating noise rather than clear signal. Research confirms that hydration levels in the outer skin layer directly affect how mechanoreceptors fire, and that repairing a damaged skin barrier actively reduces sensory hypersensitivity rather than just soothing surface irritation. For those of us with a long history of skin sensitivity and reactivity, this matters. I’ve found that applying moisturiser thoroughly, almost like an additional layer of clothing, genuinely improves my sense of where my body’s boundaries are, making me feel less hypersensitive and more settled in my skin, quite literally, when I go out. Finding a product I consistently tolerate has been its own years-long challenge — many ingredients, including synthetic fragrances, parabens and a number of natural extracts that trigger mast cell reactions, have caused more problems than they solved. I’ve eventually settled on Avène XeraCalm cream, formulated for chronically irritated and reactive skin, and the difference in both skin comfort and sensory resilience over time has been significant.

Alongside the external pressure of compression clothing, there’s the internal equivalent: keeping blood volume adequately topped up through electrolytes and increased salt intake. This sounds counterintuitive to anyone raised on standard cardiovascular advice, but in orthostatic hypotension and POTS the problem isn’t too much fluid, it’s too little circulating volume to maintain pressure when upright. Salt draws water into the bloodstream and keeps it there, giving the heart something to work with rather than leaving the autonomic system to scramble for adrenaline to compensate. I drink electrolyte-loaded water throughout the day and increase this significantly during flares, in warmer weather when I’m losing more through sweat and when increased vasodilatation works against me, and before any activity I know will challenge my system. It doesn’t solve the underlying dysregulation but it meaningfully raises the threshold before symptoms kick in, which on a difficult day can be the difference between managing and not.

One of the simplest and most effective proprioceptive tools I’ve found for the transition between wakefulness and sleep, particularly during the worst of the seasonal shifts, is a small weighted blanket. Not the full-sized weighted blanket, which in my case quickly becomes claustrophobic and even painful, the pressure too uniform, too total, something for my body to fight against rather than rest into. Rather, my preference is a smaller, lap-sized version that can easily be repositioned. I tend to use it across the chest and torso, which seems to be where my nervous system most needs to feel grounded, craving that extra sensation of weight, and the effect is quite specific: the gentle, consistent pressure gives my brain the information it needs to stop searching for its edges, to stop generating its own feedback in the form of muscle tension and pain. It helps me soothe off to sleep on nights when everything else has failed, not because it solves anything but because it provides just enough reliable input to let the nervous system stand down.

Which brings me back to why these tools matter as much as they do. If a nervous system starved of reliable feedback will eventually generate its own through pain, then every proprioceptive aid, every compression layer, every weighted blanket is an act of pre-emption, giving the body what it needs before it resorts to louder measures.

There’s a temptation, when any environment causes this much backlash, to simply stop going into it. To stay home, stay still, stay in the sensory profile you can predict, and yes, there are times when that is exactly the right call (today is such a day). But over time, avoidance has its own cost, one that mirrors the physical cost of not moving. Avoiding sensory stimulation not only leaves that part of me that is sensory seeking creating its own mental and sensory noise out of boredom, it leads to a sort of sensory and social deconditioning, exactly the same as the body becomes deconditioned when I don’t try to move enough. I need to keep practising my relationship with gravity and space just the same way I practise being in crowds of people and places that challenge my various senses, but not by throwing myself to the lions, rather by controlling what comes in and what stays out.

Using earplugs, tinted glasses, clothing that marks out the edges of my body so I know what is me and what is something else, these are not avoidance strategies but, rather, participation strategies. They allow me to be present in places that would otherwise be inaccessible, to keep practising, to stay in the world rather than retreating from it entirely. The goal is not to remove all challenge but to regulate how much arrives at any one time.

Strengthening exercises play a big part in all of this, not just because strength means sturdiness but because the body can start to trust itself more once core muscles are properly recruited. After what has possibly been years of deconditioning due to endless cycles of chronic fatigue and pain, this can seem like a lot of work to do, but a targeted approach such as that taught inside Jeannie Di Bon’s Zebra Club or with the regular help of a hypermobility and POTS-informed physio (I’m now doing both) can make all the difference.

What stability training does, when done correctly and at the right pace, is teach the joints that they are predictable. When a joint moves within a range it can rely on, supported by muscles that have learned their job, the nervous system receives consistent, trustworthy feedback in response to that movement. This lowers the threat threshold. The body stops asking “am I safe?” with quite such urgency and the pain, which has been functioning as a compensatory feedback mechanism all along, begins to reduce. Not because any tissue has been repaired but because the nervous system no longer needs to shout quite so loudly.

I experienced this directly in 2025, when concerted work around stabilising my pelvic region with a physio reduced pain not only there but in my knees, which had been taking the strain, and further up my back as well. The whole chain quietened down once the foundation became more reliable. Shoe orthotics supporting my collapsing arches had a similar effect, significantly improving not only foot pain but all the way up through knees, hips and back. Yet internal strengthening ultimately goes further than external orthopaedic adjustments, because the strength is always there, not only when you’re wearing the helpful thing, only to leave you without it the moment you take it off. I tried an orthotic suit at one point but it was an expensive mistake for me, unbearably hot and tight during a flare, and the act of removing it left me more symptomatic than before. Core strength, once genuinely built, doesn’t come off with your clothes.

Stability training also improves vestibular and proprioceptive acuity, refines movement reflexes and supports spinal stability, and as these improve, the brain begins to recalibrate. It starts building a more accurate, more trustworthy map of the body in space, and that map itself becomes a source of reassurance, moderating pain responses that were never about tissue damage in the first place but about perceived threat. This modulates pain not by working on tissue at all but by changing what the nervous system believes about safety.

And here it's worth saying clearly: stretching is not the answer, and for this type of nervous system it can actively backfire. Every time I've gone there, whether through hands-on therapy that pushed my joints toward their end range and overstretched tissue, or simply overdoing movement because I could, especially when positions get held or involve hanging off the joints, as yin yoga so often advocates through its sustained passive postures, I've paid for it with much more time spent in pain, in the form of increased bracing and guarding afterwards. The body's backlash, when its protective efforts are too abruptly dismantled, is simply to increase them. Sometimes it takes even longer to recover from this kind of intervention than a straightforward overexertion would, because my system is now in high alert, the nervous system having interpreted the end-range stretch as a loss of control, thus as exactly the kind of unpredictable laxity it has been working so hard to guard against. Going to end range feels, to this kind of nervous system, like removing the suit of armour in the middle of a battle.

The correct order of play, for anyone working with a hypermobile body, is to begin with stability, then add balance, then coordination, then strength, and only then mobility, and even that final step approached with great care. An informed hypermobility-specialist physio will know how to guide you through this sequence and at the pace your nervous system can actually tolerate.

It’s about strategic core exercises and positioning corrections synced with breath, done at a pace that is just right to not aggravate your nervous system into feeling threatened. Because too much too soon, especially when tackling deep core muscles that may have long ago surrendered their supporting role, handing over to peripheral movement muscles that were never meant to do such a support job, can generate its own backlash of internal panic, a kind of demand avoidance of the core, leading to flare-ups of dysautonomia and POTS and even more bracing-style pain.

Believe me, I have been there more than once, including when I first embarked on this latest round of physio, and learned all this the hard way. And when that backlash happens, continuing can feel pointless but it’s not. It’s a case of starting right back at the beginning, cautiously feeling out what your nervous system is prepared to take as its first gentle introduction to appropriate movement, done so slowly that it can almost feel as though you are doing nothing at all, but you are. I can tell that I am from the strength of reactions I’m getting when I do even slightly too much, which is so bizarre from the point of view that I can do quite a lot of different exercises with complete impunity these days; it’s only when I start to sneak closer to those core muscles that have been fast asleep for so long that I’m suddenly in this game of grandmother’s footsteps, creeping up on myself and having to pause and pretend I’m doing nothing at all just as soon as what I’m doing starts to get noticed.

Mindfulness and nervous system work sit alongside all of this, not as alternatives to the physical but as part of the same practice. The audios I return to in the night when I wake in pain, the breathing techniques, the body scan approaches that help me locate where I’m holding tension, none of these solve the underlying condition but they really help the nervous system stand down from its highest alert, creating enough of a window for the body to remember that it has known less pain than this. They are tools for interrupting the feedback loop, and used consistently they become part of that portable habitat I carry with me.

By taking it slow and doing just enough each session to gently arouse curiosity in the body, inches of steady improvement can be made, crept up on, measured by the steadily increasing benefits of enjoying more time spent doing things I enjoy without the constant backlash. I began this process in earnest in January 2025, coming a long way over the course of that year from where my nervous system wouldn’t even cope with a journey in a car unless I used sensory deprivation and elevated my legs the whole time in order to waylay a flare when I got there, and even then the vibration of the car could tip me into symptoms. At the start of that year I was walking only minuscule distances from one bench to another, where I would have to sit until my heart rate dropped by thirty or forty points before moving on again, and still experiencing severe crashes when I got home. Through the diligent practice of recumbent exercises and using compression clothing, straps and tape whenever I was out, I eventually reached the point of going out without the constant need to do these things.

In a few weeks I’m about to tackle my first train journey and a trip away that takes me far from home with limited luggage space to take comforting paraphernalia with me, but I will certainly have the right kind of clothing, all my straps, my sticks and a roll of kinesiology tape, not to mention a ton of electrolytes to keep my circulation doing its best. And so the tortoise travels: slowly, deliberately, carrying what it needs.

But the deeper shift, the one that makes all of this possible, isn’t really about tape or compression or knowing when spring will stop ambushing me. It’s about the end of a particular kind of self-alienation, the years of judging my experience through eyes that were never mine to begin with. I was using neurotypical eyes, able-bodied logic and the assumption that my responses were disproportionate rather than precisely calibrated to a different set of inputs. I spent years mystified by my own flares, bewildered by the timings, convinced I must be doing something wrong because there seemed to be no logical rhyme or reason for it. That bewilderment was a form of internalised ableism, born out of ignorance, because it was impossible to see what was going on through neurotypical eyes when those were the only ones I had been handed to use. No great surprise that I've made far more headway understanding all this since my autism diagnosis and reframing everything, not just the most obvious things but the subtler and sometimes fairly covert ways my nervous system expresses itself, which account for so many of what I'd previously written off as inexplicable physical foibles.

What I’m slowly learning is that my nervous system was never wrong. It was doing exactly what a nervous system wired this way would do: bracing against uncertainty, crashing after overstimulation, keeping me indoors when it couldn’t make sense of the season. The problem was never the responses. It was not understanding what they were responding to.

And once you start reading your own body in its own language, some things that looked like failure start to look like fluency. The hypermobile body both flies and braces, and these are not contradictions but the same truth expressed in different weather. The AuDHD mind thinks in spirals because spirals are how it gets somewhere, circling back not because it's lost but because each pass adds a layer the last one couldn't reach. And my nervous system, I now realise, has been doing exactly the same thing, returning again and again to the same question, am I safe, not out of malfunction but because each time it circles back it is working with whatever new information the environment has given it, updating its assessment, doing its job. The nervous system that seemed so unreliable turns out to have been extraordinarily consistent, just consistent according to its own logic rather than the logic that was imposed on it from outside.

That doesn't make any of this easy, but it does make it, finally, legible…and legibility, I've found, is where self-trust begins.