The Things I Thought I Should Be Able To Do

Reframing a lifetime of dysautonomia, hidden limits and misplaced self-blame

Photo by Ales Krivec on Unsplash

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.