There is simply no unpicking my AuDHD brain from the matter of this current (or any other) ME/CFS burnout and I am getting to meet a lot of AuDHD, and other versions of neurodivergent, individuals in the ME/CFS group forums of late. That the one factor is related to the other, in so many cases, is clear to me even though it may not be, singularly, causative. “A susceptibility” is how I would word it… and it certainly adds a whole other layer of complication to managing physical disability, coping with symptoms and learning the utterly crucial matter of achieving far better energy management when it comes to stabilising after a relapse. There are other potential links: a proneness to small fibre neuropathy being another intriguingly shared factor in common between ME/CFS, fibromyalgia, long covid, Ehlers Danlos Syndrome, ADHD and autism (a topic I’ve been meaning to write about but, for now, I will add some links to my resources pages when I get the chance). What I am focusing on today is the particular matter of navigating a highly fluctuating condition such as ME/CFS where there tends to be a very limited energy capacity, a variety of triggers and a strong tendency for exertion to have both delayed and exaggerated consequences when you also have AuDHD “wiring”.

Post Exertional Malaise (PEM)is a massive part of ME/CFS (one of its main listed characteristics) and that ADHD tendencies feed directly into the risk of reaching a state of PEM is under no doubt because of the constant need to pursue dopamine combined with the way achieving an “endorphin high” from some enjoyable activity can mask crucial signs of burgeoning exhaustion, overstimulation and pain until it’s too late, hitting you only after the endorphins have ceased flooding your system with natural pain relief, often long after you have overdone it. Rolling PEM can become its own chronic state (one I intend to write about soon); a whole other dysfunctional lifestyle habit of sorts whereby we prone to it pull ourselves along through life using the overlapping handgrips of many dopamine-masked overexertions (of both physical and mental source, not forgetting emotional exertions since we tend to live-out our lives so deeply and intensely) that we hardly even notice the ever-present layer of, never-quite-recovered-from, gnawing fatigue that underpins it all until it’s too late, and then we crash spectacularly. Our version of normal is so embedded in the feeling of being overstretched, overtired, overstimulated, over everything that we are the last to notice we are leading the wrong kind of life to be sustained beyond the heady burst of youth. The fact we get so much of our tension and stress from a largely internalised landscape may mean we don’t even seem to be living that fast and loose until it all becomes too much.

This is the inherent risk of a life spent in near constant hyperfocus, so much so we often forget to look up and notice the bigger picture. It’s also testament to a particularly uneasy relationship with the matter of time; or at least that is certainly my experience of being AuDHD and I’ve heard other neurodivergent individuals describe similar.

Hyperfocus time tunnels and flow states pass relatively quickly; far quicker than phases of stopping or slowing down. You feel like you are constantly losing time or racing against time, it’s a constant “foot on the peddle” kind of feeling and of being the driver of it all, which is necessary to those of us that need to feel in control of things, if not always thrilling, but often means never having time or opportunity to look out of the windows at the side of your car. Yet these states can also feel reassuring or at least better, we think, than being left to face the abyss of emptiness we imagine is the alternative to the proof of life that is a constantly hyperactive mind, which is the only kind we have probably ever known. “If my mind ever stops whirring”, we subconsciously think, “I will surely be on the brink of death”… because I have only ever known this long continuum of mental overactivity; I’m more aware of it than my own breath and, when it stops, the ensuing silence gobbles me up!

It’s true, these states have made up the vast majority of my life because my AuDHD brain simply hops straight from one thing to another, when it’s not overlapping several. The only way to disengage my brain from one hyperfocus for long enough to break the train of obsession is to distract it with something else, which sets you up for a lifetime of hyperactivity fuelled by novelty interspersed with a whole load of distraction-seeking, which passes as some sort of respite or holiday from the intensity of it all. My autistic side is more than happy to settle into a long groove of hyperfocus but my ADHD side prefers to jump around more, just so long as its alway kept occupied. Together the two factors fill in all the blanks for each other; so there generally is no pause, no awkward hand-over, no skipping of beats, the one aspect being always poised to take over just as soon as the other takes so much as a tea break. I recently heard a description of an AuDHD brain on the podacst AuDHD Flourishing, episode Lazy on Purpose: “My brain is an out of control idea-fountain when I’m not distracted” and this is what it feels like to me!

Slowing things down (as that same podcast episode talks about) can feel delicious and yet still allow attention to be directed towards certain things (insert “the right things”, ones that support calm and recovery, not to mention continued pacing). It has become, by and large, my current way of life and is starting to reap benefits, not that it came easy (5 weeks behind me and I am still in the nursery slopes of gathering pacing and resting achievements). It’s taken removing all imperatives, delagating a great deal and allowing time schedules, such as they still exist, to be very soft and malleable, geared at basic requirements such as meals, rest, gentle movement (not exercise!) such as obtained from watering a few plants or doing morning stretches, plenty of relaxation and better sleep. It’s also been a case of having to, so severe is this current relapse into the “bad old days” of ME/CFS. The only way I get to move forwards, not remain stuck or relapse backwards, is to keep out of my over exertion zone (allowing no more than 2 mins at a time in that, if it happens by accident, and only then rarely with an enforced recovery time straight afterwards) by pitching for this level of rest achievement daily, not just very occasionally as someone might take a day off at the weekend. I am now, finally, managing to earn myself small tokens of energy, meaning I can occasionally afford to spend time engaged in some chosen gentle activity like drawing for 20 mins or (here) writing a post semi-lying down and with breaks, without risking another crash. Meanwhile, my muscles are far less hypertonic, as they had been chronically for many months prior to stopping (thus there is less rigidity, pain and dysfunction); now I just need to encourage my mind to also be less hypertonic, as in less controlling or obsessed with being occupied!

Time periods feel expansive when you have nothing left in your diary and/or you don’t have the energy reserves to do anything much or go anywhere. It can (when there isn’t the constant worry about “why” you feel like this…which is a worry that is hard to let go of!) feel oddly delicious to someone who has a track record of filling every nugget of time to the extreme of activities and thoughts.

The days feel so long because you’re not trying to make anything happen and not really checking the clock. There is an abundance to it, once you get out of the fear of it…which is not to say achieving this state is easy but, once you start to feel even slightly luxurious due to your excess of free time, the one thing can help compensate for all the other niggling feelings of doom at having such an empty existence compared to “normal” life or other people. As a species, we have become so terrorised by the idea of emptiness and void and it goes against my very wiring so I have a particularly hard time with it; but I must try to find the positives, for the sake of my health.

Sometimes burnout can feel like a cry for this kind of slowing down; or at least it can seem that way retrospectively, once you’ve stopped assuming it was a catastrophe coming out of nowhere (which is not to say some crashes aren’t catastrophic because I know that they are and for no fault of the person in question). If you manage to catch it before it becomes catastrophic, you may have the facility to make some of these manoeuvres I describe in the direction of expanding time mindfully, purposefully, towards healing. Leave it too late and there can sometimes be nothing left but enforced physical inactivity which, ironically, can throw your mind into such turmoil that mental stillness is all but unachievable because you are now in full fight, flight or freeze mode and so you never get the rest you really need. This time, I caught myself right on the brink…with enough stamina left to, decidedly, teach myself how to do less whilst still having the choice of it and the energy left to explore how powerful it can be as a lesson ploughed back into the rest of my life.

Because an inch too far and I could have lost all hope and/or stamina or become so demand avoidant towards the enforced inactivity that had landed on me that I was prepared to wrestle it to the end…and struggle, when you are systemically fatigued, gets you nowhere.

It’s true, being chronically ill makes you sick of the state of inactivity and you long for time to go quickly again as desperate boredom sets in. If you are unwell or disabled and live with the constant frustration of longing to do more than you currently can, you can deeply resent and struggle with the expansive time feeling that can be so delicious and so intriguing under other circumstances; and I admit to having experienced a lot of that deep resentment and frustration (again) lately, it’s been far from an easy few weeks since finding myself suddenly halted on my path so decisively and not for the first time either (here we go again). I have gnashed my teeth and wailed…have felt sorry for myself, angry, bitter…and then I have let it all go, at least some of the time, managing to drop either opinion or expectation for short periods of time and then just let it all be. This achievement, of doing nothing for a few moments of time at a stretch, turns out to be one of the biggest achievements of my life so far, ironically!

Because, especially if you are AuDHD, or I imagine ADHD, such pregnant pauses can feel deadly or terrifying when they just keep on coming over you without any say-so from yourself. A chronic condition such as ME/CFS can suddenly sweep you off your feet again, whenever it wants to, and you can wrestle with it all you like but it’s one of those cases where to struggle is only to find yourself even more tangled up in it. There is no choice but to stop and be prepare to learn.

When an AuDHD brain is forced to stop it doesn’t really stop for that whole initial time of it (even when the body has become more inert)…not whilst any mental momentum is still caught up in the parts of your cells that have anything to do with generating energy. Out of habit, your overactive brain likely continues to extort hefty demands out of burnt-out mirochondria, undermining all your other efforts at resting, until you realise you haven’t really stopped at all…not whilst you brain is still whirring away at top speed.

Because when your AuDHD brain hits against even the insinuation of emptiness, it only manufactures more ideas to become fixated on again, making it very hard to achieve the mental rest your whole body-state is crying out for. Every pause…rather than being the real pause that you desperately need…instead gives birth to a thousand other ideas to be pursued, if not by your body right now then by your ever machinating thoughts charging ahead of movement and these, however static your limbs, seem to be able to keep on churning and chundering along, with no off switch, just as long as you have any breath in your lungs….at least until intense brain fog shuts down even that (thankfully, I haven’t gone there for more than an hour or so at a time recently but am keeping my eye on the trend setting in). Cognitive impairment is such a hallmark feature of severe ME/CFS that this mental overexertion factor is something to be thoroughly aware, even wary, of and I have never felt such a strong instinct to remain guarded against allowing mental fatigue to take root in me right now (as it did last time I was severe, which may have contributed to just how hard…how many years it took me!…to get back out of it; fear being that, as I am now almost 20 years older, such recovery would be much harder to achieve).

This kind of highly overactive brain makes up imperatives that you “must” divert all your attention and energy to or you feel like you might miss something important (a deadline, an opportunity, a need to crystallise some nugget of information your overactive mind has turned up so that it can be rendered useful by yourself or other people in the future…this factor is what so often drives me to blog, even when most exhausted).

Yet, when you start to pace properly you realise, in those (at first) very small pockets of time when you’re actually doing it somewhat right, just how delicious a state of empty mind can be; how some of the very healing elixir you’ve chased after with your mind all these years exists in the spaces between things, where nothing sustains except breath and a willing openness to the experience of being carried for a while, instead of ploughing along according to your own inner stream of directives. Its a state of surrender and a state of not knowing or needing to know.

Conditioned words such as lazy and useless will spring quickly to mind in an afford to sabotage it, but really it’s the ceaseless mind-twitch we AuDHD tend to self-generate that makes it so uncomfortable and hard to sustain.

Because it can be an utterly terrifying thing to surrender to such moments when you have an always-on AudHD brain. Here, in your mental package, is not one but two slightly contrary directions from which endless reasons why not to do this surrendering-thing will be presented to you in a gunfire-rally of excuses designed to self-sabotage like your very life depends on it. You may not think these self-sabotaging thoughts so much as feel them as the impulses, twitches and urges that compel you to become distracted and absorbed by yet another compelling idea or beguiling object your eye happens to land upon, even as the muscular interruptions to a moment’s serenity turns it into the sudden urgent “need” to scratch an itch, stand up and act or break up the silence. There is always something telling you this one thing is important or the exception to the rule of slowing right down and emptying your time of all imperatives.

You may tripwire yourself so often you barely gain a single second of letting go for the first few weeks of attempting it but, eventually, with at least far less external imperatives to pressurise you (hopefully), your own manufactured ones may start to spontaneously give way for just long enough to allow you to fall through the cracks of the ceaseless “busyness” and “endeavour” that has come to constitute your life…and to float along in a sort of sea of calm that defies all description. It’s been happening to me more and more, spontaneously and with less resistance, these last few days, and I can also recall this happening the last time I had a long ME-CFS crash, though it took me, that time, about two of its five years duration to get there. And I know, from that, my AuDHD brain will now likely redouble its efforts to drive straight through the rare serene feelings like a snow plough on a mission but I’m getting better at noticing its tactics and holding it back.

I simply can’t sustain being more active than my highly restricted physical state can presently cope with before PEM sets in, nor being so endlessly geared-up in my head or in pursuit of mental engagement and novelty; all these things have to be now rationed and watched for signs of over-exertion. Something has to happen voluntarily now to dilute the intensity or I risk becoming even more limited than this, not even as a flare-up but a permanent state, as I see happen to other people. I have to look out for the sudden, almost self-destructive, splurges of overactivity that my AuDHD brain can give rise to and I have to want to achieve something very different, most of the time, whilst throwing it the odd carrot of novelty in self-rationed doses, according to what I can currently handle without crashing.

Last time, as a result of the extreme slowing down (or, the new term I am learning to use, “Aggressive Rest Therapy” or ART; how ironic that I get to do some art after all, having not managed to pick up a paint brush for weeks…), I was able to gain a huge foothold in my own recovery (it was around the same time I first started blogging, back in 2011, and the external processing I did through writing helped me to frame what I was experiencing, so I would never forget it). At least, I got better to the point where I stabilised far quicker from the still persistent but now briefer flare-ups I was living with than when I was striving so hard to come up with a cure as well as attempting a more “normal” level of activity than I was now capable of. ME/CFS doesn’t simply go away, it hangs around forever; so you have to learn to live with it appropriately.

This is why it’s so important to allow yourself a long-haul period of stopping everything at the first sign of burnout…give it as long as you can spare…and not just fill it up with “stuff” like you do with the rest of your life. For me, a couple of days or a week wouldn’t have been enough to get me out of this current burnout. I needed to remove all perceivable obstacles for as many weeks as I had at my disposal which, thankfully (for the first time in three years) I was able to do, scrubbing my diary clean for well over a couple of months (not that I had much choice since I have hardly been able to leave the house without falling into desperate PEM). I do concede, it’s extremely rare for us humans to be able to claim unlimited time off (but, then, sometimes, illness will force us to, whether we like it or not; I can’t pretend that this pause was my idea, only that I am proving more willing to go along with it than I might have been under other circumstances, because it’s not been that inconvenient to me this time). Perhaps it’s the only way this AuDHD brain was ever going to get to experience again the very-necessary spaces in between, where true rest, recovery and healing lies. Because, while it’s still work in progress, I’m now getting glimmers on a more regular basis.

Hyperfocusing on, say, writing a blog speeds time right up again and brings back that feeling of limitation, of parameters and pressure, because there is an objective in sight; I am the dog after a hare again today (and the last hour has gone in a blink) but it is what I regard as a scheduled dose of dopamine fix, earned through diligent pacing for days.

As an external processor, I do find I still need to do these things (process my thoughts in some outward form) at times when the urge feels driven by the auspices of my own need to understand my own experiences better and gain the most out of them…including my increasingly pressing need to claim times when I’m not internally processing at all, which is what I’m blogging about here (there’s a hefty paradox). By writing about it, I’m actually getting to understand it all better so the small relapse in expansiveness is possibly worth it in the long run (and we all need our dopamine fixes, some more than others). I mean to get back to my task of being taskless this afternoon.

Still, letting go more often in between is the thing I’m now more readily achieving (at the start my 6th week…still having to resist the urge to tell myself things like “by the end of this week I will aim to be able to walk on my own outside the house, do more useful stuff” etc…and just allow things to continue as they are, no judgement, no demand of “progress”). I’m also gaining more periods of sometimes fleeting, sometimes more sustained, complete and unadorned rest (not scrolling, reading, listening or watching whilst pretending to be resting) instead of the endless blocks of activity and exertion that used to define my days, not so long ago, until I tipped over most evenings and wondered why (my Visible app is the proof of this steady lifestyle improvement and, with it, I am doing so much better with pacing and holding energy steady overall). It’s a new rhythm of life and one that suits me far better, given my health record and increasing age, than the largely AuDHD-driven way I was living before. Though I have allowed myself to relapse into the boom-bust pattern and rolling PEM many times since my initial burnout and stabilisation, all those years ago, this pretty darned severe ME/CFS wake-up call has been enough to show me I really can’t now go back to the way things were before the final push I made to shift locations and start again, which is tantamount to saying I will be pacing out the rest of my life from now on; a very new trick for this AuDHD dog to learn but I never say never to the possibility of a change for the better.