Remember you used your willpower to keep going before being ill. Now you need to use your willpower to say stop! (ME Association leaflet on Pacing: Energy & Activity Management)

I really want to try and talk through some of the first stages of learning to pace because it’s not as simple as just saying “go off and do it” (as you possibly know and I am surely learning). As per my last post, I’m using two powerful aids to help me master this: the book  Classic Pacing for a Better Life with ME – Ingebjørg Midsem Dahl and the Visible app, both of which I highly recommend as complementary tools for anyone with ME/CFS or long covid.

Fighting off impulses to “just” do a few things when, according to the method you’re now leaning into and trusting to bring you some sort of recovery from your latest bout of worsened ME/CFS, you should be taking a break is hard and not least when you are AuDHD as I am. The compelling impulse in me to remain busy and engaged at all times is extremely dominant due to my neurotype and my upbringing in a highly neurodivergent, perpetually busy and stimulating, household so to go against this grain is like a leopard trying to lose its spots; but try I must because it is frequently the undoing of me!

I’m now noticing, in all their glory, how often and in what form these impulses rise up in me and just how relentless they are. I’m referring to the kind of urges to get busy that, the more I work to suppress them or push them back, the harder and more cajoling they become, needling me to do just that little bit more, to squeeze in that one little thing that “won’t take long” or supposedly use up much energy, also the highly creative kinds of persuasions and justifications they use. Even as I lie in bed before starting my day, I struggle to ration the length of the periods I spend listening to an audio book or podcast (though reading accounts of severe ME/CFS has been a real eye-opener as to just how fatiguing audio materials can be!) or to suppress the urge to “just” pop onto my phone to check something…yes, all fine, according to the pacing protocol, just as long as I stick to 10 minute bursts of activity then rest for at least 20 mins afterwards (I’m aiming to follow a fairly tight 1x activity to 2x rest period ratio in even the smaller things until I have this pacing thing off pat; once you get the hang it you can afford to be a little more flexible and realistic to accommodate the rhythms of life). I just can’t seem to do pacing for very long before stumbling over the desperate and often highly creative urges of my mind to get away with breaking all the rules and doing a bit more…despite the only person it ever cheats out of anything being me!

Because I really am extremely destabilised by ME/CFS right now; this is the worst bout I’ve had since before we moved house and possibly including when I had covid at Christmas because this is proving to be even longer lasting and all-pervasive than that was and without any of the subtle yet encouraging signs of daily improvement that I had when I was going through that two weeks or so of active virus. When ME/CFS strikes, you can feel utterly entrenched by it with no view out and it’s exactly then that you need to work hardest at not provoking it any further, including by taking all exertion pressures off its shoulders, not adding any more because your mind gets bored. The less you “do” the better, in the name of restabilising as soon as you can because the longer you get entrenched, the harder it is to get out and I can tell this quite serious bout, where I can manage very little physical exertion at all before I am flattened (to shower or to get dressed tires me out sufficiently to count as a main exertion out of my daily quota and I can’t go for walks outside at all right now without risking several days dire consequences) needs to be taken seriously.

So I am having to take this pacing thing very seriously, I know I NEED to in order to avoid entering a phase of ME/CFS that I can’t get out of in a hurry (as I have had in the past) and yet I still veer towards cheating myself of the better results that could come from sticking more diligently to the pacing protocol whenever my other impulses get the better of me. Its like being a recovering addict…an addict to being occupied!

To be fair (with the help of the book and Visible) I’m doing better than I usually would and I’m also noticing and admitting, a lot more than ever before, how the effects of not pacing really impact me in ways I previously denied.

For instance, I’m noticing more than ever how breaking that ten minute activity rule sets me back with almost immediate adverse effects in terms of my increased symptoms and fatigue (and then less ability to recover from the fatigue, even when I rest afterwards; whereas, if I preemptively stop the activity to rest, my recoveries come along quicker overall). Even when the “activity” is a sedentary one such as watching tv, reading, replying to an email or listening to something (these, I now realise, are the activities that I tend to treat as though they are “nothing at all” on the exertion scale when sometimes they actually expend the most energy of all…for a prime example, you can read my recent post on how I came to realise that just sitting as a passenger on a car journey can floor me for days!) it can have very dire effects if I choose not to pace them the same way as I might pace walking or housework.

In fact, some of the mental overstimulation activities are the very worst for triggering a worsening or a crash and I wonder if this is typical for some of us more cerebral personalities and/or when we are neurodivergent in one or more ways. Has this pitfall in me been an enemy in plain sight because of my lack of ability to control it because I am always overthinking, always very amped-up mentally and never take information or stimulation in lightly but tend to over-process everything I come across (so, in some ways, a monotonous physical task be a welcome rest from overthinking, in my case)? I’m starting to build-up a hierarchy of the more sedentary activities based on what I’m learning about them, via the Visible app, which helps me to monitor their real effects in my pacing points for the day, including those I have long thought of as harmless or energy-neutral.

Some of the results can be quite surprising, for instance how one tv program I enjoy watching can overstimulate or drain me much more than another though I had no idea it was relatively mor stimulating (it could be that it engages my brain more, which can be sufficient to tire me out at certain times of the day). Choosing to watch a single video by some birder or animal conservationist on Instagram can be ok but scrolling through my feed and being subjected to all the random, often highly stimulating, dross that appears on social media can be a whole other matter. So it’s a learning curve, but I’m learning a great deal about myself and my tolerance levels.

The point still is to always factor in lengthy times when the objective is to do nothing at all except rest and relax…not just to “recover” from exertion after it happens but to “heal” (which is to say, build up reserves of energy so that the nervous system has enough resources to get better plus handle any unexpected demands that come along). Coming to grips with the need for both “recovery rest” and “healing rest” can, if handled the right way, turn resting itself into an “activity” you become invested in, which may help you to get over the trip-wires you encounter if you’re one of those people who panic or self-shame at the idea of doing nothing. Remember our culture is very heavily tilted towards doingness and those of us with ME/CFS have to swim against that tide to get better (we’re often the type that most succumbed to that mindset in our earlier lives).

Turning the very activity that is pacing into something to be enthused or excited about can be a way of getting over the demand avoidance that envelops you at the mere thought of doing nothing for extended periods. Also keeping those short blocks of activity varied, so they aren’t all cerebral, physical, sedentary or upright etc is important to make a go of it and keep you invested. It can be a good excuse to revive your embroidery hobby, pick up your instrument and things like that, assuming you’ve got that much stamina, or allow yourself to bird or cloud watch, listen to as well as read stories and turn everyday necessary tasks such as dusting or washing the dishes into ways you get to mix up your day. Just so long as you spread them out as short blocks of timed activity followed by at least as much recovery time once your time is up, you are on the road to pacing better.

By the way, you can ditch all the terror you probably feel…and I know I did…at the thought of deconditioning the body or making yourself much worse through lack of exercise (an excuse I have used to push myself out on many a walk when I knew I wasn’t really capable of it, with frequently dire and lasting consequences, including sizeable setbacks). The book I’m recommending dispenses with all of that in detail since its not been found that even those with such severe ME/CFS they are bed bound for extremely long periods, perhaps even for many years, loose muscle tone in any lasting way. Apparently it’s also been found that you literally can’t rest too much if you have ME/CFS so dare to unlearn all that cultural indoctrination about being sedentary being so universally evil and, instead, believe that its another crucial factor of pacing 101 that we stop everything if we need to and really succumb to the need to rest ourselves thoroughly without all the interruptions when we think we have to move again. When we have ME/CFS, we need rest far more than we ever need to keep throwing ourselves back into the fray of activity and our reluctance to believe this can be one of the biggest sticking points to achieving better stability or getting to a point where we feel mostly well.

So when was the last time I just sat there and did absolutely nothing for long-ish phases of time? When did I, with hands on knees, just sit and watch the birds out of the window and let my mind become blank for more than just five minutes at a time? In fact, when do I ever allow myself to be still, without my mind flooding with a dozen new and ever-more more jet propelled urges to do half a dozen other things the moment I allow myself to get going again…and then, once I get going, becoming so hyperfocused I forget to get back to my pacing? Every time I allow myself a short period of activity, I risk becoming embroiled again. It’s hard…probably one of the hardest things (if not the hardest) I’ve ever attempted but the few times I managed to really master it, last week (mainly because my husband was on leave and very quick to point out if I lapsed…), I began to feel noticeable benefits that I find hard to explain in words but I felt them clearly enough. There were distinct shifts in me that I hadn’t experienced for a long time, some of them for years, which manifested slowly and subtly like ghosts of a new experience stood on the periphery, contrasting starkly with all the stuck-feelings of chronicness. The best I can explain is that my nervous system felt less compressed or jangly, my body felt less hypertonic and my endorphins felt increased, in short bursts, that almost felt like excitement or waves of appreciation and something bordering on joyfulness. I can vaguely recall feeling like that much more often, even frequently, back in the good old days, back before ME/CFS took hold in such a way that it has become a whole other way of life but I think it had been a very long time since I had been there, even for a moment, until I started properly pacing last week and now I hold out for experiencing even more of this.

So it turns out, pacing is not the passive thing I thought it was, its not just the “absence of activity”… it’s this extremely proactive thing, ironically. You “do” pacing and then good things start to happen but you have to enforce it, you have to make sure it occurs, you can’t just allow yourself to believe that you are pacing enough if you are merely going with the flow of your old ingrained habits.

It has such positive effects on anxiety too; I can already sense that. Health anxiety isn’t to blame for ME/CFS but is an inevitable part of it. The longterm lack of traction with healing, the worsening, all the baffling new symptoms that arise, the feeling of having no control over either it or any other aspect of your life…anxiety is unavoidable. However, as soon as you start to pace properly, it’s possible to sense subtle improvements, left and right, and this can start to undermine the deep anxiety you’ve probably developed about your health. A glimmer of hope appears on the horizon, ironically from doing less to try and fix things or distract yourself than you’ve ever done before, and then the nervous system automatically resets itself, inch by steady inch.

You’re reminded of the body’s innate ability to repair itself and that there are powers above and beyond human effort; that we don’t know or control everything and that it’s sometimes in the letting go of things that we make the biggest leaps of all. It’s an affirmation that your weary, broken body actually does want to heal, that you’re on the same page as it is, with the same longing to get better….you were just going about it all the wrong way until now and not pulling together as a team until this moment. With humility, you learn to listen and to back off; to let it set the pace; to acknowledge that there are stronger positive desires at work in your entire body-system than you ever have emerging in your thoughts, that it’s time to talk less and listen more, to enable instead of force. A sort of awe takes you over…awe and respect and humility, a sense of a greater power, or witnessing something bigger than yourself taking over the healing process. It’s like refinding your faith in life, in goodness and possibility as you realise that the odds aren’t as stacked against you as you have been feeling for so long.

With cautious optimism, you begin to dare to look forward once again and this, combined with lessened exhaustion and anxiety, starts to to have a combined positive effect plus your nighttime sleep starts to become calmer and more restful too, or at least that’s my experience so far (in spite of the fact I am allowing myself to sleep so much more during the day when I need to). The medicine of hope flushes your system with endorphins and then, subtly at first, you start to sense improvements in levels of energy, of calmness, clarity, resilience…nothing that should make you run before you can walk (that would destroy all the headway you’ve made) but enough to realise that in doing less you are really doing everything.

Taking note of the small improvement can really boost morale and is especially helpful if memory issues are one of your struggle areas. No need for some long journal entry (or a blog!), just a note on your phone will do but it’s something to look back on to help notice some progress. The Visible app has the facility to record all your symptoms and experiences in it, along with all the progress charts recommended in the book done for you at the click of a button, so that makes it easier than ever.

I just want to add one thing here: using the Visible app has shown me countless times when I would have assumed I “must” be feeling better now after some phase of PEM or times when I would have certainly allowed to myself to push on through, from one task to another…but because I can see with my own eyes that I’m not as alright as those assumptions, I’ve made myself stop and rest. The same with setting a timer: many times I’ve stoped being active because my allotted time for being busy is up but, if I’m honest, I would “just” have finished another one or two tasks if left to my own devices.

Every time it happens, and so I sit down and take a moment again, I realise that to continue would have been to push through something and overdo it. I know that, in the oast, there’s no doubt I would have at least doubled the length of my exertion, maybe more, and that based off how I currently feel, that would have been too much.

Why aren’t I so good at knowing this for myself? Could be my interoception (the internal sensory system in which the physical and emotional states of the person are consciously or unconsciously noticed, recognised and responded to) is far weaker than I’ve tended to admit, which can be a common failing of autism. Combined with my ADHD and its preference to stay busy, this possibly sets me up for ignoring a lot of warning signs and routinely overdoing it. Just because I tend to be, if anything, hyper aware of the internal sensations in my body to the point of painfulness doesn’t automatically mean that I’m great at reading or interpreting them (or listening to them at the same time as being distracted). So it’s really helping me that I now have these external helpmates to warm me that I might be about to overdo things, before it happens!

Progress won’t always be linear and nor will it always be as easy or straightforward as it sounds. Having the morale to pace will ebb and flow, depending on what else is going on at the time. You have to allow for these setbacks without feeling as though the entire experiment has failed or aborted.

For instance, I was going great guns and then, yesterday and this morning, as the prospect of my husband going back to work today after his leave finished loomed on the horizon, I lapsed somewhat and then noticed how I use busyness as distraction from what I don’t like. As I face far more time spent alone from today, the urge to get busy is mounting in me…in spite of my physical capacity being as minuscule as it was the day before (interesting that!) and, honestly, I have just overdone myself writing this post. The urge to distract myself from loneliness and other emotions I don’t like by overdoing certain tasks that have the power to absorb me for long periods of time is much stronger than usual in me today so my counter-will to pace needs to be even stronger than it is, thus I intend to cut my morning burst of blogging short right here and now and get back to the R & R that is the order of the rest of my day, having overtipped my balance already. Importantly, after I have rested appropriately, I will need to only choose activities that are far less cerebral and that don’t involve writing or mental hyperfocus for the rest of the day. The point is to realise in time and make restitution for the overexertion before paying the price, and to try harder next time…just keep trying until you get it!

This is where the rubber meets the road of pacing, with no one there to administer it except me and my conscience plus my burning desire to regain stability in my health. I know I have my work cut out but it’s so important to me that I stick to this method and see it through since it offers far more optimism than any other approach I have yet to come across (the book is quite compelling about that and I haven’t even finished reading it yet; the Visible app is also based upon a huge body of science about the benefits of pacing in ME/CFS). To make it work, I need to stick to the rules and if I have to keep on setting timers for 10 and 20 minutes every time I do something then rest, to make sure I adhere to the on-off rhythms of pacing fully until I ingrain the knack, then so be it!

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.