I’ve given it lip service for a lot of years but now pacing is (or has to be…) a long term commitment and a full-time way of life. By the way, want to finally learn how to pace, step by step? I’m using Classic Pacing for a Better Life with ME – Ingebjørg Midsem Dahl, a very highly recommended handbook of pacing to manage ME/CFS, the most useful book I have found with many positive reviews from users. Because it’s not so obvious as you think and I’ve been getting it wrong for a lot of years!

I believe that I’ve finally absorbed that, when I do any activity that doesn’t constitute pacing, I almost certainly risk triggering a flare-up of symptoms and chronic fatigue, which may or may not be severe, roulette fashion, and all the more…apparently…as I get older, also in proportion to just how long I have been living with ME/CFS, which is now two whole decades. The severity of the condition can really vary with time, I know that from direct experience, but the worst parts of it get harder to bounce back from each time they are allowed to happen.

Each and every time I experience a relapse or episode of this sort, I can trace its roots back to some version or other of “not pacing”, to pushing through something because I felt I had to or even wanted to in the name of reclaiming what I vaguely recall as being “a normal life” for five minutes. It’s so hard to strike that personal balance: I tell myself I’m pacing a lot more than ever these days (I kind-of am…) yet it’s still hard not to fall into old patterns and external ideas of what other people consider to be normal activity levels and behaviours, sometimes without even noticing how much I have slipped again until the after effects come to get me.

For instance, just this last week, I had tickets to attend a four day music festival, one we have been to before during one of my better phases and a highlight of the year (though I actually managed just three out of the four days this time…and that took some doing). I took every precaution to help myself cope, for instance we arrived much later than the start time each day so I could gather some extra spoons in the quiet mornings at home, plus I pre-arranged a disability pass from the organisers that would supposedly gain me some accommodations, which boosted my confidence before we got there (though this proved not to be worth the paper it was written on, material for an upcoming post on the challenge of being taken seriously with invisible disability…). I didn’t have to personally carry anything as my husband did all of the donkey work with chairs and bags and we ended up staying put at the same stage all day instead of moving around to see all the different bands like we used to do, then went home to our own comfortable bed each night. In other words “all” I had to do was show up and listen to the music, something which sounded calm enough to virtually eradicate the need to pace (because how can you truly pace when you’re at a festival and everything going on is highly stimulating?) yet, still, it utterly wiped the floor with me!

The severe disruption to my routines and lack of opportunity to lie down to properly rest, the ceaseless crowds, the late nights, the inclement weather (chilly, wet and windy) which really affected me because it meant I was effectively “in” my winter body full of aches and pains and just so many hours of overstimulation hit me the hardest yesterday, a typical 72 hours after the event finished, though the tell-tail signs of not coping were already there if I’m being honest. For instance, I was already feeling flu-legged and weak by day three on Saturday, even before the bigger acts came on but, of course, I just pushed on through, not wanting to let anyone else down…until it became quite obvious we had to skip the final day on Sunday.

Now, as a result, I’m a total train crash! Yesterday, I hardly managed to move off the sofa once, I was so weak and so orthostatically intolerant, incredibly sleepy and really quite unwell. I’ve written most of this post as nuggets jotted down while I was like that (an attempt to declutter my mind of ruminating thoughts and in some vain attempt to gain a dopamine fix) tapped out in ten minute bursts whilst lying down, punctuated by long periods of dozing. Today, I have at least managed a shower and to get dressed, though it was touch and go and here I am editing this cobbled post into some sort of order ready to publish, though I won’t have much stamina left by the time I’ve done this.

It’s really not ideal to allow myself to become this flattened as the haul back to balance can be long and arduous from such a tumble. It’s why pacing is just so important to me…I have to be so darned wary of overdoing things like this as it’s not unusual for it to lead into one of my more sustained periods of burnout that seems to take longer and longer to recover from every time it happens, the more so (apparently) this year, possibly because I’m still very-much experiencing the after effects of relocating, moving house and Covid so my vulnerability is particularly high. In some sense, this whole year feels like a “bust” year in the boom and bust cycle so adding extra “bust” to the equation only makes things more precarious. I’ve been trying so hard to regard the whole year as a much-needed process of recuperation, with excellent pacing as its main implement…but I seriously got it wrong this last week, all because I chose to overide my own better judgement “just this once”.

Another reason why these bigger periods of “bust” need to be avoided is that a state of complete crash requires prolonged stillness and even bed rest, which especially doesn’t work for me, for one reason because of my ADHD. The relative dopamine starvation of convalescence can be counterproductive to my ability to bounce back, either because I become so entrenched in low mood and lethargy I can’t easily seem to climb out of the sluggish state I now find myself in or because I then, out of desperation, try to bounce back too quickly or too soon by launching a dopamine mission rocket, completely overdoing it again, resulting in a sort of reverberation of fatigue that ping-pongs me up and down several times in quick succession, something which is highly destabilising and can ultimately take longer to recover from (I touched upon this pattern in another post recently). It’s difficult to convince my ADHD brain that I also have to also pace myself out of the hole I got myself into through lack of pacing!

The other is because I am hypermobile and, as I age, seem to gather more and more ill-effects from being too sedentary with this condition, possibly because my muscle tone is more erratic than it used to be. Long days of enforced rest because I literally can’t gather the stamina to move have dire consequences for blood flow, digestion and removal of toxins from my body, which rely quite heavily on movement to squeeze these things through. So, very quickly, my facia becomes sticky, my posture deteriorates and becomes gravity challenged, I then end up with all kinds of dysautonomic effects, from eratic heart rhythms and orthostatic intolerance to chaotic temperatures and broken digestion, waking up feeling breathless, hot and with acid reflux in the middle of the night when I should be restoring myself with precious sleep, thus feeding back into even more daytime exhaustion.

Avoidance of sleep disruption, at all costs, is another sound reason for better pacing and it’s the consistency of the good sleep that really matters because chopping and changing from one night to another won’t cut the mustard in ME/CFS. While at the festival, I slept like a log (though not always top quality sleep…), so exhausted was I from the overstimulation, but ever since then it’s been a dire struggle because I’m having to rest-up so much during the day that my whole body is off kilter. After several weeks of prizing the positive effects of my much improved sleep because I was learning to pace myself better, this setback is utterly galling. I become extra sensitive to every minor thing when I’m like this, which exacerbates everything else going wrong in my body. It’s why a steady lifestyle of constant pacing, to avoid the boom and bust and avert the dangers of crashing, is the only real hope I have to find true and lasting health stability!

The combination of mental with obvious physical exhaustion since the festival has hit me like a head-on collision and this is something to consider once again, since it was mentioned in in my last post …”just” being around people, taking in a lot of visual and sound stimuli and changing up your routines can be massively overstimulating to certain kinds of nervous system, especially if neurodivergent, and can take a huge recovery process to wind down from. In chronic fatigue, contrary to what you might expect given it’s an enforced state of slowing everything down physically, the brain itself can become severely amped-up so that it becomes extremely hard to switch off or slow down, like a factory working overtime, gathering momentum, and can thus take several days to wind down after being overstimulated, causing even more fatigue (perhaps one reason for delayed fatigue because everything you’ve experienced catches up with you all at once and gets processed a day or two late when you finally cease being so busy…), sometimes well after the causative event. People who are deep processors take a little extra time to comb through everything they experience so, when those experiences mount up for a few days, it can take quite a while to process the energetic reverberation they have caused to build up in the cells of the body (where we have temporarily stored them) through the brain.

Providing even more evidence in favour of constant, steady pacing so that these bottle necks of experience don’t occur. Every time I’ve experienced some monumental crash that’s set me back for weeks or even months, it’s had something that looks a lot like “overdoing it” at its source…that, or some viral component (though I now see how chronic lack of pacing leading to fatigue has repeatedly set me up to be extra susceptibility to viruses, a pattern I can trace back for many decades, more on that below and it applies to my succumbing to covid at a time of high stress over Christmas). Likewise, every time I have had one of the countless so-called minor flare-ups that constitute a life of chronic health issues, it has also generally come about because, in one way or another, I stepped over the need to pace and turned a blind eye to my undeniable limitations in this regard, perhaps for only a relatively short period of time, but I seldom get away with it unscathed and I should really know that by now.

So, in conclusion, I’ve finally realised there can be no compromises and no fooling this pivotal part of me that so vehemently demands pacing as a full-blown way of life, not a hobby, since it really does call the tune in me, ignore it at my peril, and will no doubt set the rhythm for the rest of my life too. This factor is hard-wired into me and has always been there, if heavily masked…not just as a consequence of chronic illness and trauma, though those things have given it impetus, but to some large extent because of my neurotype versus “the way the world has been designed” to operate at a far more speedy, more demanding, much more multitasking and relentless, pace than inherently suits me, and I can no longer pretend to be able to keep up with that other pace. My body will object to it, every time, one way or another. I need time to recover, I require extra time to process and I need respite from stimulation…and in all honesty, always have.

If I can only learn to dance to the beat of my own drum, at last, in spite of all those other impulses making demands of me or shaming me into being more busy-seeming than is good for me, I can perhaps enjoy a better, far more stable, less compromised “up-then-crash-back-down” kind of life, ironically given that having to pace feels like the ultimate compromise when you first start to consider doing it, especially as someone once addicted to the thrill of a great deal going on (that version of me was truly decades ago, when I had a lot more stamina with which to pretend to keep up, but our culture helps to keep the echo of it alive, tricking you into thinking of leading a constantly busy life as the normality you hanker to return to the moment you are feeling better). The one supposed compromise (being the surrender of the more adrenalised way of life I used to consider normal) is worth it in order to cease compromising my health long term!

It’s not an easy thing to achieve, or to come to terms with, in the beginning but is the most worthy of aims…more so than trying to “get back” to the way things were before you health tanked…because the benefits are just so huge. I’ve heard a great many of the people who talk about chronic fatigue describe how the single most powerful, transformative and healing thing they ever did on their recovery journey was learn to pace. Forget about all those other largely failed modalities, supplements, treatments and approaches…pacing does for so many of them what all those other methods generally failed to do in the long run; it enables the nervous system to reset and regain stability, which is pivotal to recovery.

So it’s worth it, I now more than suspect, but it’s not as easy as it sounds, so says one who has repeatedly failed at it. In fact, I am now forced to humbly admit that most of my prior attempts at pacing, over all the many years of constantly dabbling with it, weren’t really pacing at all because I simply wouldn’t stick at it and would then fall back into old habits as quickly as blink. I always had my excuses at the ready, just as I did last weekend, as to why this one thing I “had” to push through was outside the jurisdiction of my need to pace or couldn’t be avoided (a dread of disappointing or letting others down being one of the most consistent excuses) when, really, the whole of life has to become one giant, continuous exercise in pacing to make this whole thing work!

This hefty mindset challenge is even further compounded by the fact that a post-exertional crash doesn’t necessarily happen in real time or even right after the phase of over-exertion, as alluded to above, during which you might have seemed to be coping “alright” until the very last moment or even for a while afterwards. Post-exertional crashes or flare-ups associated with chronic conditions very often have delayed onset, occurring (as I mentioned above) up to 72 hours after the precipitating event, as is very well reported in chronic fatigue circles. By the time you realise what has happened, you may well have continued to overexert way beyond the trigger point or even instigated some new source of overstimulation, emboldened by the false assumption that you “got away with it” the first time, making it extremely hard to isolate the main trigger and, of course, much more likely that you will now suffer a wholesale crash from the multiple effects of overdoing it all catching up with you days later with the velocity of a pile-up on the motorway!

All the more important, then, to slow right down so you can be sure you aren’t overlapping phases of exertion or exposure to sources of high stimulation (which is the same thing really) to such an extent that the consequences compound, one into another, becoming so utterly muddled you can’t ever hope to make head or tail of your own fatigue trends sufficiently enough to get out of them.

So, now (yes, still with set-backs) I’m listening and I’m learning, am gathering information from all sides…books, research, podcasts, social media (there are now a lot of social media accounts dedicated to living life as a “spoonie”, example as above), from anecdotes and from the behaviour of my own health trackers…my Garmin watch and the Visible app which give me real-time information about how my body is responding to even mild exertion, as I wrote about recently.

The Visible app (designed for tracking long covid and ME/CFS) is proving most useful of all because it’s geared explicitly towards a body that’s prone to chronic fatigue, not some would-be athlete, with algorithms based off research that has studied how these kinds of bodies respond to factors such as alterations in HRV and sleep quality. By tracking and comparing such variables with symptoms, I am beginning to form a more coherent picture of the relationship between my own exertion behaviours and my symptomology, even those symptoms where you’d be forgiven for overlooking the connection to exertion patterns were it not for the correlations you are now seeing with your own eyes. I’m also noticing how little it takes to over-exert me!

The body is, after all, a whole system and the nervous system that largely runs the show has its fingers in every piece of it so, really, it’s all intrinsically connected. Therefore the ability to expose how apparently arbitrary symptoms may be related to each other, because they tend to occur together in certain circumstances of overdoing things, can be eye-opening in the extreme…take a pattern of herpes simplex virus flare-up, something I hadn’t experienced for years until this weekend.

Through close scrutiny and my recollection of certain key times this has happened before, I am now able to associate the virus with certain overlapping conditions of exhaustion and overstimulation: the same ones which often seem to lead to episodes of body-wide but especially occipital, face, eye, ear, vulva and bladder-affecting neuralgia that may not even give rise to the tell-tale cold sore that (in my case) materialises only very occasionally, beyond the subtle tingle sensation on the lip, as a red flag that the dormant virus is being stirred back to life by a very particular cocktail of overstimulation. In fact, I had no idea until now that, for instance, latent herpes simplex virus (HSV1) can give rise to occipital or trigeminal neuralgia, to which I have been quite prone this last three years, and is also associated with migraine symptomology. It can also be provoked by exposure to windy weather conditions (likewise hot weather – both mentioned in this John Hopkins article), as I was at the music festival last week. These were both lightbulb moments for me as the very first, extremely severe, episode of occipital neuralgia I ever experienced, lasting for several weeks on and off, occurred right after I had been sitting on some windy steps with no hat waiting to meet someone off a train; I never forget the circumstances as my dog had died just a few days earlier so I was certainly under emotional stress. In fact a correlation of windy conditions and stress seems to have been present in all the situations I can remember of this virus stirring up again, which tells me that, without the addition of stress or strain, flare-ups can be better avoided. This is not the first time I’ve drawn some perhaps bizarre-sounding hypotheses about the herpes virus (I long-ago took down my old post connecting EBV flare-ups with times of being bullied) but I have yet to find cause to doubt any of them and I offer this new example as a clue to how slowing things down helps patterns to show up earlier, especially those that remind us to go easy on ourselves.

in other words, it’s so important to remember that exhaustion isn’t the only symptom-language that your body speaks in; it can protest in so many other ways, some seemingly quite mild or unrelated but are they all part of a bigger picture whereby it is attempting to communicate with you, potentially urging you to slow right down? Tracking them can be so useful.

Big picture awareness is power. Being able to expose the patterns helps you to avoid the trigger points. I’ve said all these things many times before. Yet, at the simplest level, pacing avoids all of the pitfalls in one fail swoop and without having to isolate every single clue your body throws at you because, through it, you are exponentially less likely to stumble over some tripwire or other that is destined to cause you to crash if you continue racing around, perpetually distracted and impulsive, failing to think through the possible consequences of actions. Or because you are so sleep deprived, due to your mind being perpetually overstimulated, that you’re life is effectively just one long series of knee-jerk responses; very far from being the cool, calm and collected state of affairs that you nervous system has learned to trust during the very rare times you’ve ever managed to pace yourself more. You can see how it may have come to prefer times those times when you’ve been literally forced to stop, typically through illness, compared to when you are too busy to notice what is really going on with your health and your frequently overwrought nervous system!

Even the best kinds of over exertion can knock us off our pacing track. Especially if we are neurodivergent, I would say particularly if we are ADHD and most especially of all if we are AuDHD, our bodies may have learned to mistrust those times when we are being more impulsive, hurried, unfettered and carefree because they so often don’t end well for our nervous system. That’s not to say we should become the polar opposite of those things, which would have its own dire consequences, but to consider that we may do better when we are at least paced enough to be more aware of some of the other choices we have and to take time to recover from the inevitable overstimulation of life. Just doing this simple thing – pacing ourselves better – calms the whole nervous system down because it is now enabled to catch-up with itself, perhaps for the first time in decades which, in itself, can be medicine for the entire system.

Which is not to say do it for a bit…then tell yourself you’ve recovered enough to dive straight back into the fray; I’ve tried that numerous times and it doesn’t go well, in my experience. Such highly temporary phases of pacing may actually trigger a longer series of micro traumas, foisted upon oneself as a result of repeatedly shocking our own system back to life whenever we cease our pacing again, probably because we regarded it as some sort of temporary interlude when actually our body is hungrily craving a far more paced existence as a long term state of constancy or way of life. Frequently withdrawing the paced lifestyle becomes its own source of trauma, not least because of the unpredictability it gives rise to. When we slow down, our body optimistically thinks that we’ve finally got the matter of pacing off pat when, all of a sudden, we abruptly throw it all over for some new phase of exertion or excitement because, in our mind, we were just regathering our stamina, not changing our ways.

That’s simply not enough for the kind of nervous system that is prone to chronic fatigue, so the risk of relapse will be ever present from now on; always waiting in the wings. To avoid that, we need to make assurances to it that we have learned our lessons and won’t keep repeating the old patterns, which is a kind of brain-retraining exercise but it must have the substance to back it up if our body is going to trust us ever again. The boom bust cycle is a dire consequence of a lifetime lived in the old pattern of assuming that pacing is just something you do for a short rest or when it is forced upon you and becomes so much harder to recover from once you pass mid 50s…let me tell you. To get beyond it, you have to make pacing a commitment and a whole way of life.

What your system (if it’s anything like mine) most probably craves by now, like it’s life depends on it, is some real consistency; something that (for once) it can rely on like the sun coming up in the morning. And it wants to feel seen and heard, not just given more of the lip service that so many of life’s ill-fitting circumstances have foisted upon it across a whole lifetime of conforming to other people’s expectations; a mere shadow of what it really needs to thrive. It requires some form of assurance and steadiness to hold onto and lean into and, by learning to pace, we provide that very thing, which is not to say we will never enjoy ourselves again…far from it…likely the very opposite, if in a different, better adjusted format to how we thought we were enjoying it before; perhaps we will even come to like it better because it’s a better fit!

The point isn’t to become a perpetual couch potato (which is much more likely when you boom then bust). The key to pacing is to stop or slow down for long enough to listen to the body’s signals, before the crash happens. It’s preemptive and preventive so just imagine that; the potential to reduce the number of crashes and unpleasant symptoms because you could see them coming. Some of those signals may seem stronger or louder when, at first, you slow down but this could be “just” because you are paying more attention to them now, without so much distraction going on, or it could even be a sign of deep relaxation stimulating a symptom of recovery such as an immune activation (for instance, increased heat as cells recalibrate or the sensation of muscles receiving better blood flow and finally able to relax their perpetual hypertone, for instance). These sensations are quite different to those which stem from overexertion and it’s important to make the effort to learn the difference between the two.

In my case, hot flushes are very often an effect of finally relaxing sufficiently, after a sustained period of exertion, for my hypertonic muscles to let go and blood to flow again yet it can feel overwhelming or even terrifying to experience the extreme contrast with when I keep myself more busy. So I need to learn to sit through these episodes, not panic or use them as a cue to eject myself from my chair and get busy again. Conversely, an inability to get warm can tell me I’m well over my exertion limit, literally frigid with the effort entailed, and need to STOP whatever it is, including mental exertion or exposure to overstimulation. Either way, slowing down allows me to notice these things and what they are trying to tell me.

It’s also important to take time to notice if low mood is from lack of activity (lowered endorphins from reduced exercise or people contact etc), which could be contributing to a higher sensation of pain or discomfort and, if so, seek out less exhausting or triggering sources of endorphin boost, before the downward cycle of lowered mood gains momentum, which can lead to even more pain and lethargy. Pacing should enable more useful self-awareness of this kind of thing, not less, providing opportunity to find creative solutions because, again, the objective of pacing isn’t to sit down and be bored for the rest of your life.

This factor of lowered endorphins has been a particular challenge for me as someone who generally has to seek out a daily dose of sensation and stimulation to feed my ADHD nature but its one I continuously work on (as in, finding other ways to lift my mood and engage without burning myself out) whilst keeping firmly in my line of sight the immoveable truth that pacing serves me far better than overdoing things ever did. A little bit of what I like doing is always far better than having to give it up completely because of a wholesale crash from doing too much of it!

Mixing short and varied activities up, with breaks in between, can be a way forwards as it keeps variety in my life. Wash the breakfast dishes, rest, read, rest, top up the bird feeders or water the plants, rest, watch a program, rest, chat, rest, eat some food, rest, look something up or reply to a message, rest, pick up a hobby, rest, go for a short walk, rest…you get the idea. It’s when I do an activity too long or join more than one activity together that I get into deep water before very long and is a habit I’m trying to unlearn by enforcing the punctuation marks in between. I have to make sure some of those activities I listed are enjoyable ones, things I really want to do, not just mundane but, even then, still remember that the point is to do them in small bursts, not to get sucked into a long hyperfocus that will potentially tip my balance again! Taking into consideration other triggering/tiring factors such as noise and other stimuli or certain people you can’t avoid, changes in the weather, hormones, stress, viruses etc and counting them all as if they are an activity in their own right, even before adding anything else into the mix, is important as no situation is utterly neutral to a nervous system that picks up on absolutely everything. When other factors are at play, you are likely to be able to do less, in a one plus one potentially equals too much kind of way, so you have to take account of it all, which is easier to do when you are going along in a paced way.

Its a challenge to learn all this, I will certainly admit, and the demand avoidant part of me has kicked up a whole lot of sand on the way to resisting its inevitability but I do believe I am finally learning the pivotal role of pacing if I am ever going to achieve the vastly improved life I have so long gunned for; the one thing won’t ever come without the other. So (with the unwavering support of my husband and a growing handful of other family members, to whom the vernacular of pacing is steadily being disseminated as their expectations of me likewise adjust…this also helps them to hold me accountable to myself) I am now prepared to sit down and negotiate better terms with my own nervous system, with a view to establishing the kind of systematic harmony, through a more paced existence, that my future health relies upon.

Its about resetting expectations towards aiming to achieve better management of energy and resources rather than cure, since I can never hope to “cure” all the many factors that have contributed to my long running state of chronic fatigue (many of them relate to my neurodivergence and are thus hard-wired into me). However, managing them better offers me the scope to not only find a better place in which too reside with my quirky physiology but also the chance to get to know, and thus work with, my unique nervous system all the better, so ending many decades of making false assumptions about it, based upon misguided comparison with other people who are wired quite differently to me and whose way of life was never a match for me. So it’s down to me to carve my own way…or should I say, pace…of life and I need to start seeing this as a positive, not a penalty, of chronic health.

That book I recommended again: Classic Pacing for a Better Life with ME – Ingebjørg Midsem Dahl, now added to my Chronic Health Resources page above.

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.