Time for a bit of an update; I’ve been making some slow but steady progress in the recovery of my baseline after a major ME/CFS crash and, in some moments, could be deemed to be doing remarkably well as there have been days when I’ve astonished myself with what I can do and then no major relapse in the aftermath. This is with no small amount of thanks to the Visible app, which keeps me on track and very diligently following the pacing guidelines and other things that I’ve talked about in some of my recent posts because I can see the effects of not doing this in real time when I’m wearing the device. I’m not out of the woods yet and, in fact, am experiencing quite intense PEM today (reason I have decided to lie myself down and write, today, instead of doing what I had originally intended to do, which would have been somewhat more upright and physical) and it can be deeply frustrating, upsetting and demoralising, at times, just how slow any sense of progress can be but the glimmers of light are certainly there.

One thing I have made massive inroads with is improved orthostatic tolerance, the lack of which (POTs) has been one of the most disarming health challenges I’ve had to deal with these last few years and, of course, always much worse at the time of a crash like this. Through the diligent use of electrolytes taken at, what for me (from trial and error), seems to be the optimum dosage of two “strips” in my water per day to keep my blood volume up and my body more upright, I’m managing to do more things without the once inevitable high heart rate and following crash; quite the revelation as I had previously been wary of using electrolytes in high dose because of a fear of salt (so indoctrinated do we all tend to be as to the so-called risks of consuming higher levels…) and also due to my apparent intolerance of the higher amount of potassium, flavourings and sweeteners they invariably seemed to include. However, I now find I am getting on just fine with a brand called LMNT which are not only sodium-loaded (compared to relatively lower levels of potassium and magnesium), as is appropriate for POTs, but come in the option of flavourless and additive/sweetener free, which is by far the best, most tolerable, iteration in my case.

I’m also enjoying some success with a kind of amino acid called creatine which aids in the retention of water by muscle tissue, since using which (again, with some trial and error as too much caused severe cramps) I find I am able to stay upright for far longer without the inevitable fatigue and dire loss of appropriate blood flow. Its well worth exploring this if you are curious as I am hearing about its use in more and more resources do with ME/CFS, fibromyalgia, POTs etc. Finally, regular use of my old friend D-ribose (which I used 15-odd years ago in the recovery of a better baseline from my original crash) as a twice-a-day ATP (energy) production pick-me-up means I can limit the amount of after-effects I get from the slightest exertion and thus recover more quickly without the constant risk of PEM hovering over my shoulder in the hours or days afterwards; in fact, if I time it well, I can remain stable after doing such things as going for a walk and even improve my nighttime recovery at those times I wake up feeling almost too tired to keep sleeping (a distinctly ME/CFS phenomenon). All of these initiatives have enabled me to gain a far better foothold on stability over the last handful of weeks and you can find more details about them, research articles included, under my Chronic Health Resources heading above. With each of them, I urge cautious experimentation if you do try them out as there is no one-size-fits-all approach, whatever you may read elsewhere, and I have had to go in at quite a low dose due to my obvious sensitivity in each case (another clue to the autism that is the topic of this post; I always find that I have to micro-dose compared to other people).

What I really want to talk about today is the all pervading awareness I now have that my neurodivergence and ME/CFS statuses are intrinsically connected, which is not to say one “caused” the other or makes it anything less than a systemic and very real physiological condition with concrete physical outcomes (as it is) but that they are so entangled at the root that there can be no addressing one without an ever increasing awareness, and accommodation, of the other.

As I cautiously head back into having more of a “life” outside of these four walls, its also a diligent process of having to work out what’s going to overstimulate me and what’s going to under stimulate me…every day…with the aim of getting it “just right”, which is no mean task. Goldilocks syndrome is such a core part of my autism that it’s impossible not to notice how its at work again, right here, in how I manage my ME/CFS with a view to stabilising it again!

Because, get that overstimulation thing wrong, even slightly, and I can be thrown straight back into the mire of the very worst kind of ME/CFS symptoms, in fact it’s almost a bigger risk than physical overexertion. Conversely, if I under-stimulate (meaning strictly the positive kind of stimulation, you understand!) I can quickly flounder in other ways that feel as though I’m losing my footing with any kind of improvement. Those are the days I can well imagine sliding into such an abhorrent state of inertia that my brain atrophies and depression sets in, leaving me to flounder, bed-ridden, forever…so I simply can’t let it…and am so thankful that the first thing to come back online, these weeks, as my energy started to rally, was my creativity (as ever). This is far from the first time it has come to my rescue!

So I’ve been able to get back to doing some actual art, of the non demanding variety (small watercolours in my sketchbook), combined with the kind of art-related tasks that don’t overexert me but, rather, enable me to relax whilst being engaged with something absorbing and pleasurable. Last time I spoke about art I was feeling deeply jaded by the fact that the sheer physicality and mental exertion involved in creating new pieces in oil on canvas was proving all too much for me, given my current level of fatigue; even cleaning up my brushes at the end felt far too much, let alone the act of sitting up painting for long enough periods to warrant getting the canvas wet. Thankfully, some timely encouragement in the form of more than a handful of print sales suddenly occurring all at once, last month, via one of my online outlets (there’s nothing to beat the feeling of being seen and appreciated as a motivator towards renewed productivity and purpose!) came to my rescue and fired up the possibility that there were some creative tasks I could easily and quietly get on with, without the risk of overexertion.

I was reminded that creating new art isn’t the only way I get to exercise this particular muscle so I’ve been busily revamping my website presence, digitally remastering images and adding new print options to my site, enjoying the sense of achievement this review of past work has given me…after all, I produced most of this vast archive of artworks (well over 100 pieces) since diagnosing with ME/CFS 20 odd years ago, prior to which I had never lifted a paintbrush in my life outside of school days. Its reminded me that ME/CFS doesn’t have to be the end of a life but can mark a whole new one, when energy is managed carefully. Its done it for me before and can do it again, allowing me to refocus my limited energies in a new and highly enjoyable direction that I might have otherwise overlooked because of the way life can tend to take over and sweep you along other routes that equate to far less of a choice or preference. Truth be known, the best reinventions of my life to date have all occurred since ME/CFS came along.

Of course, what I describe above is a project that has enabled me to hyperfocus on something positive and here’s my long-established key to managing my symptoms the best…which is to do this very autistic thing…HYPERFOCUS…during which my Visible app reports that I am put into a state of something comfortably straddled between gentle exertion and total rest, even whilst fully, absorbedly engaged with the task at hand (yes, I can achieve mountains of this kind of work without my body ever having to leave its rest state of below 73 bpm for hours on end, how cool is that). This is no small nod to the fact that art was the very thing to “rescue me” the very first time I turned to it as a way of getting out of my initial ME/CFS crash, all those years ago. It routinely sends me into a sort of calm, creative trance or reverie and that’s my happiest place to be in; the very antithesis of an overstimulating life (the kind that can throw me off my baseline in 20 seconds flat). This very-effective use of hyperfocus as a self-regulatory tool, in life as well as in ME/CFS management, more than hints how the two things are related, in my view, because in order for hyperfocusing to be the antedote, the overstimulation it helps obliterate has to be one of the major trigger-factors…and nobody gets more easily overstimulated than an autistic person. My autism thrives once I find this route back to myself but it often takes the Me/CFS crash to happen for me to fully appreciate it again!

Another massive clue to a link is this much overlapping topic of “energy” itself. Having “energy issues” is often a lifelong consequence of being autistic, from all I am hearing on the topic from just so many adult female, often late-diagnosed, autistic people. We struggle, and then some, to manage and maintain consistent energy levels sufficient to cope with the neurotypically-determined lifestyles we are so often forced to engage in and then, very often as a consequence, we burn out and crash, typically three or four decades into life, sometimes a bit sooner or later, but this is a common theme that I see cropping up in a lot of ME/CFS forums, where more and more people seem to be asking “are there any other autistic/ADHD people with ME/CFS out there?” with a predictable flurry of positive answers. This energy deficit factor has got to be one of the most obvious clues pointing towards a propensity to “come down” with ME/CFS when autistic, especially if we aren’t fully armed with all the risks and necessary safeguards of being autistic in an allistically-devised world (which, of course, most of us weren’t before we became ill and/or diagnosed as autistic, though I am doing my utmost to educate my own daughter on these points). “If only I’d known I was autistic sooner” is a thought that has passed through my own head many more times than I can count but then how easy would it really have been to do anything differently, even if I had known, in a world so dedicated to neurotypical ways of doing things; you just end-up trying all the harder to fit in and come up with the goods, at whatever personal cost that entails. ME/CFS was the first thing to come along and literally force me to stop in my tracks of trying so doubly hard to get by and I’m not sure I could have avoided it, even if I had tried, because there seemed to be no alternative if I was going to survive in a career or in society at large (I really hope things are changing for the better now but wait to be convinced).

Increased sensitivity – to everything – is another big factor that feels like a link towards almost inevitable chronic fatigue in the long run. “Sensory porosity” is a phrase I recently heard describe an autistic person’s experience and this also perfectly describes how to feels to be me. I am currently looking into Sjogren’s syndrome as it would explain just so many of my more bizarre health challenges involving nerve pain and odd sensations, skin and eye issues, chronic dryness, tinnitus, swallowing mishaps, decades of interstitial cystitis and vaginal pain, digestive pain and dysfunction etc. (this is a whole other topic for another day but SS is known to be closely associated with ME/CFS and hEDS which, in turn, is closely related to autism) but how interesting that this is a condition that so profoundly affects the integrity of skin and other membranes, our very barriers with the outside world, which over time cease to function appropriately if we happen to have this dastardly autoimmune condition onboard (a likely genetic factor, one I believe I can trace back to my mother’s unusual health issues). Put simply, it’s as though some people’s protective barriers exaggeratedly wear out as they age, as though their external defences become inadequate or unequal to the task of living…and “ordinary” life itself can do this to us when we are autistic. Sjogren’s has one other key symptom – extreme, indescribable tiredness – so you can see where I am going with this. How can these frequently corresponding factors (autism, extreme sensitivity, hypermobility, laxity, permeability, vulnerability, dysfunction, exhaustion) not suggest a possible link with ME/CFS?

Sensitivity around other people can be one of THE biggest exhaustion factors for someone who is autistic and having to be selective about those I keep company with is always a factor for me but never more so than when in the foothills of an ME/CFS crash, with the risk that I can easily slip back down to the hopeless ditch at the bottom if I even slightly over-exhaust myself from being around draining or overstimulating personalities. I heard a description that went along the lines of “I’m a mirror, a hyper-empath, I feel what other people feel in their bodies, I read other people’s energy and track what’s happening with their system” from another autistic person in a podcast interview the other day and there it was, nail on head, just how it is for me. This makes it such an essential part of the process of choosing where to go, when prone to crashing, that I also have a fair idea who I will be mingling with when I get there, especially in the earlier days of venturing out again after an ME/CFS crash; I can never be happily oblivious to the people I keep company with and certainly not when like this. The longer you’ve been away from it all, the more like an energetic sponge you can feel and this is a very big challenge; you have to limber up to coping with it all again, and you also have to take it all in very small, selective doses until you have acclimatised a bit more, is what I find every time.

Its so often the case that we autistic ones describe ourselves becoming (not “merely” fatigued but) utterly disorganised by sensory overload; it can disarm and floor our most fundamental coping mechanisms, scrambling our executive abilities and overwhelming the very same aspects of our nervous system that manage every most-important aspect of the way our bodies stay upright, digest food, eliminate waste, move blood, sleep, breathe, repair. All of these things can take a near fatal (certainly most seriously detrimental, ME/CFS-like…) hit in the head when we become overstimulated by the kind of things that may not even register to other people, though it still astonishes me how oblivious most people can be to things that are like utter torture to me. Not only that but, the more I have studied the relationship of my orthostatic intolerance with exposure to any kind of overstimulation, the more I have become profoundly aware of the way that sensory overstimulation can make me, quite literally, weak at the knees; an effect I first started noticing some fifteen or more years ago, long before I realised I was autistic!

This effect is all the more stark, currently, due to the fact I have led such a low-stimulation life for just so many weeks. Over the past three days, I have been in two overstimulating situations: both times, I ended up feeling as though I was oddly taller than normal when I stood up (as though the floor was a very long way off…) and as though my feet were approximately where my knees actually are, as though numb from there downwards and somehow walking on stilts, which made me sway and feel like I had to remain so conscious of every movement I made, every well-placed step I then took and far clumsier than normal, my proprioception strongly challenged. This sensation often corresponds with the effect I frequently have of joints suddenly becoming lax and blood pooling to the floor, leaving me light headed and forcing my heart to beat faster (or, sometimes, blood pressure to go up, assuming I have a way to measure this) to keep me upright. POTs is a well-known cohort of ME/CFS but how many people make a connection between this and the kind of sensory processing challenges that are a common feature of autism? All the emphasis is so often put upon “logical” causes of reduced blood volume or worsened hypermobility but so little emphasis on why these effects come and go, clearly much worse at certain times. They are markedly so, for me, at times when I have been in a highly overstimulating situation!

The irony is that, on Friday when one of the legless feelings I described above occurred, I was experiencing a much better day and far improved tolerance of being on my feet than I had enjoyed for months…astonishingly so, in fact quite the miracle. There was a big event going on in my village and I managed to stand up for the whole 20 minutes of watching it take place, even with sunshine beating down on me; this from me, who has been severely struggling to stand still for even 5 minutes at a time lately and with no tolerance of anything but shade all year! Most incredible, I did all this with no heart rate spike at all on Visible for the whole duration of standing, astonishing because I’ve become so accustomed to spiking my heart rate like clockwork whenever I stand still for just a couple of minutes (though I did have the odd leg sensations an hour later, after sitting down in the interim…a sign of delayed consequences as my blood must have suddenly pooled to my feet in the aftermath of my big effort). But then, of course, I would have been pumped full of adrenaline at the time I was standing, due to the nature of the event, the excitement in the crowd, the intense sunny day, the dopamine rush of it all, so could it be that the overcompensation of adrenaline rushing through my system accounts for the sudden sturdiness of muscles and blood vessels that so often let me down? Of course, where adrenaline has been, PEM so often happens in the aftermath (as is the very nature of ME/CFS) but, at the time it’s happening, you can feel almost invincible (with muscles suddenly sturdy and unusually powerful, somewhat like you hear of people suddenly rendered strong enough to lift a car off a trapped person in an adrenaline-fuelled crisis…), with the after effects charging like a forest fire through a droughty nervous system afterwards. This effect might, in part, help account for my 72 hour-delayed PEM response today!

Overall, I’m finding that drinking electrolytes, every day now (and in much higher quantity than ever before) is really helping to mitigate the POTs effect…yet it still persists in sensorily overstimulating situations; there’s the autistic clue. So its extremely interesting to me that I can now enjoy a slightly longer walk along quiet country lanes near the house because of these steady improvements with being upright for longer periods but that, for instance, finding myself at a cafe inside a farm shop constructed entirely out of metal, yesterday, where the sheer cacophony of noise from people talking bouncing off the metal ceiling and walls (why they don’t routinely install sound baffles in these kinds of building escapes me but then no one else in there seemed particularly bothered by the noise level), plus the constant clatter of cups and cutlery was so intense (even with my earplugs in!) that I suddenly felt utterly weakened, cut off at the knees again, flagging over my drink, even though I was sitting down apparently “relaxing” the whole time! Autism and its relationship with unusual sources of fatigue is apparently this whole other matter for consideration when it comes to the ongoing challenges of POTs and ME/CFS and I am left knowing that I am a way off being ready to head into more sensorily challenging environments at this part of my recovery.

It’s not just the matter of sensory overstimulation either. Yesterday afternoon, I was forced to finally face up to making some pressingly necessary arrangements to do with two imminent trips I pretty much have to go on, like it or not, which will be quite a shock to my nervous system after two and a half months safely tucked away as a semi-recluse at home (one of which was spent pretty much house-bound and having barely left my village at all since June). One of those imminent trips is to visit my elderly in-law, a trip long overdue because of my health issues, the other is to visit my daughter, both involving a few nights away from home, meaning I have had to work extremely hard to devise arrangements that (in addition to be being minimally exerting, as far as is ever possible when travel is involved) need to feel comforting and at least semi-familiar to me at every turn (though I have never been to one of the places before…so a whole new hotel, new city, new everything to navigate). This is always a challenge for me when I travel, very much part of managing my autistic life as I really don’t like, or do well with, big disruptions or adjustments to my routine. In other words, I always find time away from home strenuous in ways that a non-autistic person might never ever consider, even when I sometimes enjoy other aspects of it but, with ME/CFS onboard, this is a whole other matter at the moment and just thinking about it was highly triggering to my nervous system, hence why it was something I had been putting off for quite a while!

The very fact of facing up to these up-and-coming demands on my energy, having to visualise and plan for future events that will be appearing over my horizon all too soon, and with all the inherent extra social demands and sensory overstimulation they will entail, has utterly floored me today in the aftermath (note: the fact I am a visual thinker means I actually spent yesterday afternoon pre-living the experiences in quite a lot of detail, so its almost as though I have already been on those trips, inside the always very-impactful zone of my head). In fact, I strongly suspect that today’s relapse back into a state of pretty intense, muscle-weakened, deeply-fatiguing PEM has more to do with that one afternoon of making “future plans” (imagining myself already there, in great detail, which was far more overstimulating than anything I’ve done for a few months!) than with the sensory cacophony in the cafe of the morning, though the two things combined would have been way too much for me all in one day (so, in other words, I got it wrong and overdid it again…all the while, kidding myself I was having a fairly relaxing day because most of it was sedentary). The thing is, there can be no taking the sensory, emotional, anticipatory, mental, anxiety-inducing factors out of the equation when you have ME/CFS…at least, not when you are also autistic…as these things alone can be quite enough to drain you of all your resources, even before you actually “do” anything physical. Yes, your imagination can be more than enough to undo you if you let it run riot so don’t underestimate it, a very real case of “be very careful what you think about” and for how long or at what time of day because it can undo you at a moment’s notice; at least, when you are made anything like me!

Another big learning curve has been getting to grips with the fact that I really do have to stand up for myself and how I need things to be from now on, to avoid these kinds of serious relapses happening again and again. As far as is practical, I now need to be able to say things like “I don’t want to”, “I can’t” or “I need things to be this way” on a regular basis if I’m going to take part in anything again without dire consequences. This also takes a lot of energy, not least because it involves head-locking with other people and their expectations, and also because it involves a sort of grieving process as you finally drop the mask that pretends you are coping or allows you to seem as though you are just like everyone else. You can almost feel yourself being marginalised by yet another few inches each time you stand up for your contrary needs again and this can be deeply traumatising (the human fear of abandonment is a deeply impactful phenomenon, especially to someone accustomed to feeling like a neuro-outsider), highly necessary though it may be for you to push through your own resistance to doing it rather than acquiescing, and people pleasing, once again. Being highly empathic, you can probably also sense people forming very strong opinions about your actions and starting to drift away, get impatient or cease to be bothered with you the more you present obstacles to the way they prefer things to be (the status quo), rather than modifying anything to accommodate you, and this increasing sense of isolation is the very last thing you need when you are already dealing with a highly isolating health condition such as ME/CFS. Coming out for all to see, as you really are now you are doing this, exposing limitations that are likely not all about your ME/CFS but also to do with your autism (that thing some people would really prefer not to talk about) can take great determination and courage. However, to establish a lasting baseline that doesn’t find you constantly crashed-out and disabled in the extreme, you now need to learn how to prioritise and own-up to your personal preferences and limitations and to hell with everyone else’s reactions…a gruelling task and not for the faint of heart but highly necessary.

It’s ended up being a big “coming out” year for me, there was really no avoiding it. For one, I now live where I am much closer to family and a whole clutch of old friends and therefore, at least theoretically, both see and have contact with them on a more regular basis so there can be no more hiding away behind the distances that previously kept everyone at arm’s reach and in happy oblivion to my quirks and challenges…if they see me, they get to see me like this because there can be no more pretending. The other is that all the demands of the house move and landing in a new place have inevitably put me in the way of many more people-handling circumstances; a big shock as, by comparison, I was living the life of a relative recluse for most of the last 20 years. I’ve also had to become much more frank and open about my symptoms to my husband’s family as their expectations have had to be modified in the face of family illnesses, thus everyone expected to pull extra weight visiting more often, yet with me not well enough to stand up let alone travel to see them for most of this year. In fact, my husband is urging me to now let them really see how I struggle when we are back together again because it really doesn’t help when he tells them what I’m dealing with but then I put on such a convincing front of being “fine” for a few hours that they don’t see it (and, of course, the part they really don’t see is the intense PEM crash and messy aftermath in the days after I’ve made the big effort to seem “normal” and put my best foot forwards, as I’ve always tended to do).

So has this coming out process been part of the big wave of fatigue I’m now experiencing? More than likely, it’s played a considerable part in my burnout. Its impossible not to feel judged, misunderstood and generally more anxious as you start to show yourself, warts and all, to a not-always understanding audience since, unless they are (knowingly) neurodivergent and/or have chronic conditions themselves, how could they possibly relate? With those who already know me having only ever seen me fully masked for years, and with new people to meet who will be drawing their conclusions about me largely based on first impressions, its been hard to let all that suddenly drop as I’ve had to do. What I also find particularly hard to deal with, as I heard someone describe on a podcast recently, is when other people I very strongly suspect to be neurodivergent themselves double down on their own masking around me; in fact, some will do almost anything to disassociate themselves from sharing similar traits to me when they are around me because they’re simply not yet ready (and may never be…) to let down their own protective constructs when around other people in case they find themselves in the contrary corner like me (perhaps I’m not the best advert given the state of my health…). Such run-in-the-opposite-direction reactions to neurodivergence can be so challenging to be around, not to mention exhausting and triggering, given I know things could be so different, so much more mutually supportive, if we could all just drop our pretences and be much more real and unguarded with each other. There is so much fear around coming out as neurodivergent because the world offers no great encouragement for doing so but it makes it such a singular and lonely place for those of us who go for it fully.

In other words, it takes a lot of spoons to unmask. With or without ME/CFS going on, its likely to cause a strange mixture of relief, exhaustion and grief; in fact, I just heard a fantastic word that has been coined to describe the process of coming to terms with autism later in life – “grelief” – which captures it exactly for me. I now look back and half wonder whether the extent of this year’s crash has been, at least in part, due to one very massive tsunami of PEM coming at me, generated from the last 5 years of having to hurriedly and belatedly come to terms with both autism and ADHD so very late in life, with all the inherent readjustment and reframing of the past that this has involved, on top of all the people management it entails as you inevitably start to come out to them more and more, altering their perception of you (and not always in positive ways because of old stereotypes and preconceptions). It’s been one hell of a process and, yes, I am feeling utterly exhausted and overwhelmed by it all, if I’m being truly honest with myself. I’ve literally had to re-picture the whole of my life to date, plus all of it going forwards, through this new autistic lens and that’s no small matter. Its interesting how, though autism has been my special interest for half a decade now, my hungry appetite for gathering more and more understanding of it having consumed the majority of my thoughts until this point, I’ve really strongly needed to pause all of this obsessiveness for the last couple of months, during my ME/CFS flare-up. Whilst, of course, being quietly curious as to why my interest in autism-related topics had apparently waned for a while, I mostly put it down to being so preoccupied by ME/CFS and the desperate need to focus all attention on recovering from my crash that I simply didn’t have the surplus left to think about autism much, but I now wonder if I had actually become so mentally and emotionally burned out by the topic that I just had to put it down for a while and take a breather. The fact I am back to writing about neurodivergence again today feels a bit like how my desire to do art was an early clue that I was starting to recover my old baseline again; I’m getting back to being myself again and embracing my autism is a very big part of that.

How many of my perceived limitations (because there are certainly limitations that I have to deal with), going forwards, are to do with ME/CFS (and not wanting to provoke another flare) or to do with my autism? At home, where I have largely been for the past two and a half months, I get to experience a life where I don’t have to mask at all, which is wonderful and a state of affairs I could almost wish to never step outside of again. My husband and I enjoy the kind of relationship where I can be completely myself, safely and without consequences, as it should be (I’m so lucky!) so why would I want it to be any different again? The more I recover my energy baseline and start to get out again, the more I will have to think through how I am perceived by others and how I have to “be” in order to communicate effectively with them, just to get by at all. There’s been such a lot to be said for being at home most of the time, eliminating these most fundamental communication challenges, but I don’t want to be limited like that forever, it would drive me nuts and I want a more active and positively stimulating life back. At the same time, I can’t rush the process of going back out there and risk that I keep throwing myself back into overstimulation and exhaustion mode. Things have to change from now on: they have to fit me, just as I am, and not so much the other way around as it has always tended to be until now.

Developing resilience in the face of other people’s opinions is going to have to be a big factor; I need to grow that thicker skin I talked about, if not literally (though a more positive attitude about fortifying my own boundaries might help with that…never underestimate the powerful effect, on immunity, of having a self-affirming mindset!) then at least emotionally. I already worry that I’m now perceived as desperately “needy” and a bit pathetic as a result of the last few months. I hate the very idea of that as I’ve always had to be so self-sufficient and, by default, have always been left largely all alone, the non-fit-er-in-er all my life, with my real self well hidden by a layer of masking necessary to keep myself out of harms way. Outside of home life, I’ve never managed to get any of my specific needs met, not even as a child, so I’ve learned not to make demands of other people, not even the medical system. I’m already battling so much on my own, always having to sort myself out and get what I need organised for myself, always having to rally my own determination, resilience and mental/emotional resources to fight through yet another day of challenges unaided, that to be perceived as needy is such a sting, an unfairness, if that is indeed what other people make of someone who apparently swoons into a fit of exhaustion or overstimulation at the merest attempt at doing something they consider to be “normal”. ME/CFS is a much maligned and misunderstood condition in its own right so to have this on top of autism is a double whammy; they are a surprisingly well-matched pair but do nothing to enhance other people’s opinions of you if they are the kind to presume weakness where what you are actually dealing with, and have been dealing with for the majority of your life, is actually a mark of great tenacity and strength. You have to learn to shrug this off or go under.

So if I intend to get more real with people, whether or not an ME/CFS crash is currently underway, they are going to have to find out that my tolerance for stress and stimulation is pretty low, all of the time, not just when I’m feeling unwell (a truth I am having to accept about myself, at last) and that this isn’t a mark of weakness but of living with such a highly attuned nervous system that they can’t even imagine the effects I have to deal with, since they are not wired at all like me. Again, this risks them assuming that I am extra needy or even attention seeking but, whatever they think, they are going to have to suck it up as this is the real unmasked me from now on (and perhaps I also need to spend less time imagining what other people may be thinking; I have a lifetime of fairly well justified rejection sensitivity behind me, too, and have to admit that I am now prone to imagining the very worst).

Whether I guard these personal tolerance thresholds because I am autistic or for fear of another ME/CFS lapse is a mute point when it really comes down to it (and no need to keep explaining to other people anyway). Either way, I need to do what I have to do to keep myself on the level and that’s just the way it’s going to have to be from now on, in small doses of life appropriate enough for me to handle and, hopefully, enjoy and then recover from quickly. Perhaps such a way of life could turn into the one that allows ME/CFS to retreat into the background again, as it has done for relatively long spells in my past; this time, for far longer, more sustainable, periods of time because I am so much better informed as to how the one thing certainly provokes and, to some extent, conspires with the other to keep me more regulated and safe. If I can only learn to take care of these things for myself, the more extreme measures won’t be needed by my nervous system, an objective that has got to be the best possible thing I could aim for as I head back out into life.

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.