In this still fairly new phase of managing my energy levels (now much more volatile, since covid, than they have ever been) I am learning that cognitive fatigue can be just as destabilising as physical fatigue, with strong similarities plus some unique qualities between the two things that make it even more dangerous territory for someone with an ADHD brain.

What I am seeing in myself is that something like a cognitive deconditioning has taken place (perhaps even evidence of actual damage to the brain’s connectivity structures…or maybe that only happens with repeated injuries from “pushing through” the signs of fatigue) leading to moderate or even severe post exertion malaise (PEM) when I spend too long on cognitive tasks; just like overdoing a physical activity, by even a smallest amount, still leads to physical PEM. The cognitive fatigue going on at this time feels neurological….i.e. not just “ being a bit tired or sleepy” but deeply embedded in the neurology of my entire system, just like physical overexertion is so-linked and causes an array of dysautonomic effects throughout the entire nervous system including factors such as blood flow anomalies and POTS.

So I get the impression that, just like physical deconditioning, pushing through this will only lead to longer, deeper setbacks and create harder situations to bounce back from. Having spent years trying to recover from excessive brain fog in the earlier years of chronic fatigue and fibromyalgia (something which had largely resolved for a few years by the time covid came along…and I had relative youth on my side last time I came back from it) I really don’t want to go there again and shudder at the very first signs as losing my cognitive abilities really would feel like the end!

Over the last few days, a combination of too much computer time plus the sheer ADHD speed that has wanted to come back onboard with those juicy tasks, as is my way once I get started, a couple of highly rare cups of caffeine and equally rare sugar (it’s dreary February and I craved chocolate but, by the way, neither caffeine or sugar are my friends and this is just another sign of ADHD impulsivity taking over), small talk at the hairdressers (I can usually manage this for short bursts but any amount of such social engagement becomes risky when I’m cognitively fatigued…which just goes to show how draining and unnatural I find it, rather than “relaxing”, compared to most people) plus building anxiety about seeing a consultant next week have led me to the very brink of cognitive PEM and the realisation that I need to become very aware and very careful about it or risk the same kind of crash that would happen if I was to go on a very long walk.

Its a bitter pill to swallow given that, for years, I was able to turn to cognitive entertainments to keep me going during phases when my body was more crashed out or actively injured, meaning I was able to self-entertain for long phases by learning skills such as creating digital art or hyperfocusing on other high absorbing computer-based activities, research and blogging being just a couple of them. However, not any more as cognitive fatigue, post covid, seems to be right up there in the risk category and I am having to learn to manage it in much the same ways – pacing and even avoidance though not (as I will explain below) complete avoidance as that comes with its own pitfalls for my neurodivergent brain.

Waking up with my brain feeling hyperactive yet overwrought in the night and feeling mentally groggy in the mornings are clear signs (that I easily miss when I keep myself occupied during the daytime…) that cognitive burnout may be on the brink. Plus, these days I can always verify these kind of effects on my overall stability via my Visible armband. Not that long ago, I reported that an enjoyable hyperfocus activity could generally put me into a deep, calm, sustainable state and that can sometimes be the case but not always, which is something to look out for now I notice it. This week, whilst hyperfocusing, Visible shows disruptions, in my morning readings, to heart rate variability (higher than normal) and heart rate (lower), trends that I now recognise as being entirely consistent with the more vulnerable phases in my physical stability and a clue I need to do far less for the ensuing 24 hours.

So maybe even cognitively overdoing-it can trigger this kind of disruption, especially once sleep gets interrupted, indicating I need to wind back even these cognitive over-activities by 50 per cent and remain cautious until stable again, just as I would with any physical tasks that were causing PEM, or risk another crash l if I don’t.

More abstract clues of brain fatigue that I noted down at 3am are (as best I can explain them):

The nerves in my brain feel rubbed raw, like they are sheathless…a sort of “wheels without tyres” feeling.

Those same nerves feel oddly self-aware through their own soreness (I remember phases of noticing such sensations way back in childhood…perhaps at times “overthinking” or “over worrying” had rubbed my thinking processes to the quick or even during neurological “growing pains”). Its somewhat similar to the subtle clues you might get that you are about to come down with a migraine after being exposed to a lot of sensory overstimulation but more all-consuming than migraine somehow.

I’m experiencing bouts of heart palpitations again (as I did during my crash last year), and a similar raw, tired, jittery feeling to heart nerves at different times of day correlating with increased fatigue phases.

Am wide awake at 3.30am with the mental equivalent of feeling compelled to stare fixedly at a dazzling white light even though it hurts the eyes yet somehow unable to look away (this is an analogy) ie. even though I can tell that further cognitive exertion is the very last thing I need, I feel oddly compelled to continue exercising my mind at all hours (there is an OCD factor to this, for sure).

A feeling of having been hugely (and quite disproportionately in the circumstances) overstimulated in the hours before bedtime, something which, these days, can keep me stuck in a wakefulness-fatigue groove for many days after any overexcitement (such as going out somewhere in the evening, car journeys or socialising with more than one person at a time or too late in the day), like my nervous system doesn’t know how to amp down any more. It would normally take going out to a concert or equivalent to feel this overstimulated in the night, not just a few hours of fairly methodical, enjoyable and calm, creative computer tasks but I think the problem here is just how long I stuck at doing these tasks yesterday!

My BP is currently prone to sudden leaps when I physically move even slightly and is much more “up and down” choppy throughout the day and night than it has generally tended to be (it is mostly pretty steady and in the ultimate range unless I leap up and over-exert physically so, since I have been mostly cognitively engaged, I have to assume that is also having an effect on deep fatigue levels).

Breath is prone to shallowness (and this can be a catch-22 as shallow breath born out of distraction or busyness can further disrupt the entire system). I am having to catch myself at this and actively make myself stop and take deep restorative breaths.

I’m noticing (if I’m being honest with myself) that as I increase cognitive tasks I want to do, my capacity for cognitive tasks that I have to do eg. meal planning are running out of stamina which is having a (so far) subtly adverse effect as the result is to get over-tired once everything I have to do is done at the end of the day, whereas I had it all pretty much handled until my brain became so eager to increase input. If energy tasks become a trade-off its time to tread carefully and possibly rethink.

Obsessive compulsive checking behaviours have noticeably increased eg. why do I need to check emails and social media etc. every time I pause a cognitive activity? I have no real idea but it seems like there is a sort of momentum created by cognitive activity that, once it starts, can’t bear for things to come to a standstill again so it seeks ways of filling all the spaces. It’s like I literally can’t be mentally still at the moment, whenever I am awake, day or night, as the compulsion to keep going is so strong, even though it is not what I need in this recovery phase (this is one of the biggest risks of my ADHD brain combined with chronic fatigue). It feels like another ADHD rebellion against stagnation, and a sort of demand avoidance of more rest, after all the many months I have had to sit here quietly now. I simply don’t want to continue living the lifestyle of a person with chronic fatigue!

So I’m stuck in the very behaviours that are worse for cognitive fatigue right now and which only perpetuate the gnawing fatigue that risks landing me in a longer phase of burnout. All because I got hyperfocused on some mental tasks as preferable to overdoing it physically in a phase of high physical symptoms during February (as always used to be my tactic for coping back in the pre-covid crash phase; I would always do more sedentary work at this time of the year, but now the rules seem to have changed). Welcome to new normal…very hard to live with when you are ADHD and thus in need of mental stimulus for dopamine, serotonin and therefore even pain management and sense of purpose!

This is just so tricky to handle because, maybe because spring is in the air or I’m just plain weary of this looong recuperative phases since “the Big Crash” happened last year (can’t believe it all started happening exactly a year ago) but, I can tell some part of my brain is hungrily lapping up the oh-so-familiar feeling of being busy and overstimulated. This contradictory impulse or driving factor puts me constantly on the verge of burnout under this new regime so how do I manage it without such excessive frustration (as I am already experiencing with my physical limitations…given I am still only able to manage miniucule walks before I risk reinjury and set-back due to severe deconditioning of my hypermobile body last year which is taking very slow and patient movement therapies)? If I had to pare back my cognitive thrills to an equal proportion I would surely die from frustration!

At some level I notice how it feels like “proof of life” to me when I am back on that edge of burnout again (as opposed to the living death that long recuperation can feel like…) as I spent just so many years living there in the past that pre-burnout became utterly normalised in my more vital, youthful years (I now watch my daughter living through that same constantly exhausted, barely able to stay alive stage of bouncing from one cliff-edge stress to another big deadline as I used to live in during my 20s but at least she is aware that it’s all to do with her ADHD and, with youth and awareness on her side, somewhat more manageable).

Compared to decades of that, the extremely quiet sedentary life of managing chronic fatigue still feels so relatively alien to me (even after all these months stuck deeply in it) because I’ve had much better, less restrictive, years in between, since my original crash 20 years ago and, as I keep saying, I had relative youth on my side that time as I felt my way back to some sort of recovery from nothingness and brain fog. This time around feels so much more precarious, less to be argued with, than before and I have had to learn its boundaries the hard way over the past 12 months of booms followed by very severe busts!

I’ve acclimatised to it all (somewhat) but I don’t do well on it longer term and I do feel like life is slipping away from me the less I use my brain so, like the smoker reaching for another cigarette, I find myself desperately reaching for the mental stimulus again…even though I’m noticing the damage to my recovery that it can inflict.

There’s always a devils advocate chanting “it’s so worth it…” inside my head and a desperate need to feel cognitively alive again that pushes me to do it anyway.

Yet I know from everything I’ve had to learn the hard way this year that I’m risking everything if I allow myself to push with any activity…not only physically but cognitively now too…to the point of neuralgic exhaustion as a consequence and then the inevitable long-delay fatigue. Not only delayed because it generally arrives a day or two later (which makes it hard to evaluate at the time you are doing the thing) but because it then refuses to leave!

So this factor is the biggest change since covid. I can no longer, apparently, count on recovery when I want it whereas I had become used to being able to bounce back after doing the “worth it” thing!

In fact PEM is worse on every front since that dratted virus did its worse with me, including the cognitive fatigue, so I’m learning that the same rules apply across the board…physical, cognitive, even emotional…PEM, from any cause, is all the same and to be avoided at all costs.

However, here’s that point I alluded to above and its important: I also mustn’t allow the brain to atrophy…just like I’ve learned, the hard way, that being too inactive can cause a hypermobile body to become desperately deconditioned, more so in my opinion than a standard body, hence the dubious advice I tried to apply last year (about succumbing to total rest “not” supposedly risking profound muscle tone loss in ME/CFS, yes I read all about that) backfiring on me later on the year when I found out that my body was no longer conversant with gravity (a topic, specifically to do with hypermobility and deconditioning, that I have yet to write about). However, I now know I mustn’t rush back to doing a lot off anything and must never push or I will see myself slip even deeper into the valley of limited returns; a valley with very few exits, ones which are extremely hard to find once stumbling about in the blindfolded deep-darkness of a crash phase.

So it’s a very tricky balancing act…to keep in some sort of cognitive “movement” every day, similar to micro-dosing physical movement, but it has to be just the right amount, the right kind and never sustained for too long, ideally not stressful, certainly not too late in the day…in other words, picking the optimum times for your optimum mental energy levels just as you do have to do with your physical exertions. Make those rules and stick to them because you know your ADHD brain will always try to push the envelope otherwise!

In other words, when it comes to full blown fatigue, don’t allow yourself to go there in the first place but keep well away from its unguarded edges and stick to the paths. Do everything possible to avoid the tumble from overdoing things even a little bit, whether it’s physical or mental exertion (it’s all the same as your neurology has changed now…and nerves are nerves, throughout the body). If you are anything like me, your brain’s capacity has markedly changed now; so it takes more of a hammering from smaller things, and has far less protection and resilience than before, thus it needs to take rests before sparks fly between synapses. One spark can become the forest fire so keep mental exertions (just like physical excursions back into a more active life) brief, light and sunny…just enough to fuel interest and variety but never risking exhaustion or overstimulation and always sticking to the rules about breaks and time limitations, even when you think you’re doing fine (in other words if stopping is scheduled, as it should be every hour or so, always stop and rest or do something completely different, no matter how you think you feel or are coping with the task).

Hyperfocus is a very dangerous trait to have when recovery is in the balance so (without quashing the trait…which would be to shutdown an intrinsic part of yourself and your very impulse to stay positive and feel alive) learn to micro dose it, in ways you have never done in your whole life before, which probably isn’t a bad life skill to have. By keeping the doses of activity small and manageable, you get to continue them, which is particularly important for an ADHD or otherwise neurodivergent person, in my opinion. Also vary it up (today’s cognitive activity writing this has been very different to yesterday’s which involved no words and was mostly visual and strategic, for instance). Create a menu of enjoyable cognitive tasks (just like I have become accustomed to putting the physical ones of daily life into a sort of pick-and-choose selection I can dip into as appropriate to keep my body moving in small doses).

Just like it’s much harder for a hypermobile person to recover from an extended period of inactivity and absence of appropriate load-bearing (since I learned this the hard way, I have now heard it coorroberated by many reliable sources of hypermobility-meets-chronic fatigue information) I suspect it’s much harder for a neurodivergent person to recover from extended lack of cognitive exercise and load. In fact, across both areas, my whole view of pacing has had to be changed since I was busy writing about it last year, with my source information taken from more neurotypical outlets at that time. So what’s important here is to “use it” in order not to “lose it”…yes…but to adapt the way we “use” and “move” to what we can genuinely cope with at this time, be it recumbent exercise or micro dosed cognitive excursions that we enjoy but don’t sustain for too long at a time.

With movement, the tissue difference of the hypermobile body is the issue when it comes to deconditioning, but also the proprioceptive issue plays a big part. In other words, the way we learned to be in space was probably a cumulative lifelong process, more clunky and reliant on familiarity than the next person, which then conspires to make it harder for us to go back into a more active life the longer we have been away from it….I am certainly finding this, with much reduced confidence moving around, less sensory tolerance, I now have to plan for and think about my movements much more in advance, take longer recoveries and so on.

So likewise, just as you need more consistent loading to keep those core support muscle functioning and aware of their position in space, when it comes to the mental aspect I suspect this also needs to maintain some cognitive load in order not to atrophy next time you need to use it. As best I can describe it, it feels as though the way my mind works relies on a complex of highly ingenuous if rather makeshift associative “hacks” building bridges between wide areas of information that I have just about been able to hold together so far in my life (these cobbled-together links have tended to form a particularly wide net of connections that could even make me ingenious in the right circumstances in the past…) but, when those connections aren’t used on a regular basis, they are particularly quick to become tenuous, fall apart and collapse!

This is certainly life beyond covid for me and ever more evidence I am dealing with long Covid on top of my numerous pre-existing health factors, only adding to the complications of an already over complex life. Whether this will continue to be the new normal or start to rewind itself in time (if I continue to do the sensible things and not repeatedly burn myself out) remains to be seen as cognitive and physical neurodivergence (hypermobility) certainly contribute another factor.

And now I’ve done my cognitive task for the day, its time to go and stare at some birds out the window!

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 intended to serve as 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.