Looking back in a ponderous way, I notice that I have years of anecdotes relating to “behaviours” in my body that have confounded all the various treatment providers I’ve been to see.

One I often think back to when my tinnitus is particularly bothersome is the cranial adjustment guy I went to, three or so months after the extremely loud, shrill tinnitus that used to be intermittent (and often an early warning sign that I was about to experience a “crash”) became louder and permanent back in the summer of 2018 (eight months after the shut-down that is menopause). He patiently spent an hour tinkering about with the positions of my cranial bones making small manoeuvres with the flats of his hands until, miracle or miracles, the sound became so quiet it was negligible. I clearly recall feeling quite delirious as I queued to pay my bill at reception…only for my tinnitus to return three-quarters of the short walk back to my car. Perhaps I should have persisted but I didn’t bother going back to see him again, having been in the territory of expensive “fixes” that went on to unfix themselves before.

Adjustments that didn’t “take” were a longtime frustration of the myofasical therapist I went to see for years for my chronic pain issues. She would also spend hour after patient hour playing with my body, making micro adjustments to my facia with deft fingers that could have been making lace or playing a miniature piano, carrying out all kinds of complicated manoeuvres involving my neck and jaw or, at the other end, coccyx and pelvic floor with results that, at the time as I lay still on the table or stood up for a moment to be assessed, seemed really amazing. They might last until I got half way home, during which dizzying exhaustion would inevitably claim me during the half hour drive on the motorway (I can’t even imagine doing that drive after a treatment session now) and then I would crash. There was the ever-present risk, unknown at the time, that in releasing tension in my body, my therapist was unwittingly releasing back-up methods that my body had devised to compensating for lax supportive tissues, leaving me wide open to sudden laxity and further injury straight after the sessions. Within days, as soon as the exhaustion began to lift, I would notice how my body had reverted back to its old ways or got worse and my poor therapist would raise her hands in absolute confoundment, at the next session, that nothing she ever did for me seemed to “stick” and that my trajectory was, if anything, going backwards or perhaps staying much the same when she was used to getting good results. She even passed me sideways to a guy who was so gifted in bodily manipulations that she sold him to me as a kind of once-in-a-blue-moon kind of genius who got to the bottom of every anomaly but he would also stare down at me in frequent puzzlement. One time I caught him looking so perplexed I raised my eyebrows to query “what’s up?” and he unforgettable said to me that my body just didn’t behave like anybody else he had ever worked on. I should say so, its been the story of my hypermobile life!

This was all a long before hypermobility syndromes were really put on the table for consideration; general doctors don’t even think of it, in my experience. Though its so hard now to image that (many) people live-out decades of their lives without realising that they have these, the word “hypermobile” never came up during those sessions, though a physio many years before had said to both me and my daughter during a joint session (she was experiencing excruciating growing pains at the time, another sign of being hypermobile) “of course, you do know you’re both hypermobile don’t you?” She warned my daughter off too much gymnastics, dance or ice skating, two of which she was excelling at around that time, and cautioned me that ageing might continue to be really tough. I’d known that I could bend my fingers further back than other kids at school, that I had Reynaud’s, as is the family trait, and that the skin on my upper arms and stomach could be a bit “doughy” (my mum’s was even worse…but then she was at the age I am at now) but I’d never really given it any thought until that point.

Another related phenomenon is curly tubes. It’s a phrase that’s been used to describe both me and my daughter’s ears at various times, in fact it could be applied to any part of me that is tubelike from ears to digestion to, well, we won’t go there but it’s come up. The ear thing is a long running family trait: a specialist who saw my sister’s ear canals was utterly fascinated by them, declaring with relish that he’d really love to examine the whole family (I lived too far away to offer myself up). It seems that whenever something has got to get from A to B in our kind of bodies, it travels the most lengthy and convoluted way via a surplus of passages…like  our bodies always have to be a bit “extra”. I’ve long sensed that this thing is akin to all the unpruned synapses that go to make up my neurodivergent brain!

That word “extra” could be applied to a lot of things about neurodivergnt me; I suspect that people who know my might even use it as a personality descriptor from time to time. It’s not that far removed from the word “hyper” and I am hyper in a lot of areas…hypermobile, hypersensitive, hyperintense, hyperactive ; I’m never just half of a thing, I’m all one way or the other, committed to the extremity (at least for the moment…until I swing back completely the other way, as so typifies my ADHD personality). Each end of my spectrum (one minute verbally profuse, the next utterly mute; one day up for anything positively stimulating and the next completely withdrawn) lives literally miles and miles away from the other, making transitions such a challenge and hyper fixations very likely. Well, if you had to travel so far along a very long cognitive “tube” to get from A to B, you too wouldn’t want to have to turn around in a hurry either. Also, things get stuck in those bends…thoughts, words, ditties, activities, heart rate (low heart rate variability is a known autistic thing…connected to ever-worsening health outcomes as you age), food preferences and digestive processes, medications that hang around too long in your system and increase the risk of adverse side effects…did I mention all the paradoxical responses you can have with medications and anaesthetic when you’re hypermobile? The info is all out there if you diligently look for it in the support websites and the odd pieces of research, though there clearly needs to be much more.

It all makes pinning me down very difficult and it likewise makes it hard for my body to pin itself down for very long. As soon as gravity is back in the picture, there’s slippage of all those hyper stretchy, curly, elongated connections…downwards…meaning adjustments so diligently made on the treatment table don’t hold very long as I mentioned and a state maintained in the sitting posture all gone to pieces when you stand (hello orthostatic intolerance). A great many of my issues seem to arise from this ongoing struggle with gravity, all the more so as I continue to age post menopause or, truth be known, since peri menopause was first on the horizon in my mid 30s. Curly tubes become prolapse tubes and pressure from one organ to another creates bloat, nerve entrapment and dysfunction not to mention ear ringing and variable eyesight. Dysautonomic meltdowns are par for the course the more your support systems slip and slide their way down towards the ground, messing with everything from head pressure zones to hearing, heart rate to digestion, sexual and bladder function to kneecaps and so on. Blood vessels that go all around the houses or constantly stretch thus lose blood volume along the way cease to deliver oxygen to peripheral areas; so you experience poor or erratic circulation, pain, tingles, numbness and orthostatic chaos, hearing and vision issues, pressure zones, frequent coat hanger pain (I only just learned that this oldest of my pain symptoms long attributed to fibromyalgia is more likely caused by the orthostatic dysfunction that results from hypermobility!) and nerve entrapment plus your heart gets so tired with all the extra effort; I seem to be in that phase right now and it looks a lot like burnout. 

Stagnation is a very big risk when you get like this and you have to absolutely avoid it; movement is your friend to help you keep things flowing as that won’t necessarily take place all by itself in such a convoluted system. It’s certainly helped me enormously to get things cautiously moving again…against all the odds…this last struggly week and I can now sense some light coming around that no doubt curly bend after a couple of days of gently moving and manipulating rather than giving into the urge to stop completely. Because with stagnation and hyper body parts comes stuckness of body fluids and free radicals, plus deconditioning of those few supports that you have left, then inflammation and inevitably more dysfunction so it’s up to you to make it happen. Frequently slow gut motility, stagnant lymph, blood that struggles to oxygenate peripheries, heart rate that becomes complacent in whatever its sitting down level is and is then sky-rocketed by every minor shock…all these things lead to very poor outcomes as you age. When things hang around for too long in the same place they quickly become toxic, whether they’re a bad mood or yesterday’s dinner. Sluggishness of crucial messages (whether that refers to cognitive information, pain signals or physical autocues) leads to delayed responses that then get stuck in the “on” position because the next signal is likewise delayed, leading to information stuck on loop, repetitive behaviours and chronic pain. 

One thing you have on your side is that you become the master at picking yourself up, shaking things off and trying again when you are made like this because, if you don’t do it for yourself, who or what will? Your life may not be strictly linear but around every convoluted bend in your health is a breakthrough waiting for you. So you constantly work on your (albeit limited) movement, your self-support systems, your balance, your resilience and surprising things happen from the effort because you know the cost, more than most, of having these things slip. In other words, you persist and this persistence is on your side.

You also have to advocate for this kind of a body and make it known to those who don’t realise that it exists (a lot like speaking out for all our different versions of neurdovergence, claiming space for them in the typical range of consideration). Just because we are a-typical doesn’t mean we should be dismissed or sidelined from research and treatment. ”Don’t forget to mention the long family history of curly tubes” I urge my daughter when she seeks help with a repeatedly blocked ear and she gives me that hard stare that tells me she really doesn’t want to draw attention or stand out; but that will comes with age…because, as you reach mid life, you start to realise that the sooner you own your quirks and speak out about them, especially to medical peeps, the better it all is in the longer run. It should, in theory, save a lot of time…here’s hoping, as I go back into the territory of seeking some medical assistance again. At least, to start with, I’m due to see a physio this week who has a lot of experience of hypermobility and prolapse (she was recommended by someone on the local hypermobility syndromes support group) and, better still, who is neurodivergent herself…so I’m hoping she will put together something credible I can then show to my new GP so that, maybe, they will believe me when I go in to introduce myself.

This seems to be my hyper life…so there’s no great conclusion to this post except that I wanted to take a moment to join some of the dots.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.