I think this is one of the biggest stumbling blocks of mild to moderate ME/CFS…just because you can do something doesn’t mean you should (and by the way, if you have severe ME/CFS the chances are you couldn’t even if you wanted to, which is the only reason I leave it out).

Really, I suspect that this mindset of always doing as much as we are capable of is one of the commonest things to trip-up, actively undermine or set-back any attempts to recover some sort of stability in ME/CFS, plus it even risks that you might deteriorate from mild to moderate or moderate to severe levels of functionality if you let the mindset run amok.

Because when this ear maggot is constantly in your head, prompting you to do at least as much as you can do, you are always at risk of overdoing things. Hopefully, if living with ME/CFS has taught you anything by now, you will have at least realised that doing more than you are capable of will quickly crash you again afterwards. However, its this middle ground, this apparently quite liberal request from your inner workings, demanding that you “only” do at least as much as you can do, that presents such a lot of the danger of set-back because its just so deeply embedded in our training, our culture, our religion, our moral coaching from parents and schooling, etc…always do what you can, push to your upper limit, deliver at least as much as you can manage, reach that upper extreme and hover there…always always always. And then such a guilt trip delivered if you don’t because either you’re not pulling your weight or living up to your talents!

However, in a strictly ME/CFS context, doing as much as you can do always pushes your exertion right up to your limit, with no margins of energy left over. It likely takes you way past what you should be doing above all else, which is pacing, whilst disrupting the very fine balance between using some energy yet always holding some energy back in reserve so that you can invest that surplus back into your recovery from whatever it is that you just did…which takes its own energy, remember that!

Because recovery doesn’t come for free, it takes considerable stamina to recover; its not this entirely passive thing as though you are floating up there in the ether, suddenly weightless and process-free, while your body rests and recuperates. It takes an amount of energy your particular type of body can’t just make for itself (like other people’s do), to keep all your essential functions going whilst cells rejuvenate, so you always need to hold some back in time for the recovery phase. THIS is why you simply can’t afford to do everything that you can do; and ignoring it is why you are probably falling into a pattern of post exertional malaise (PEM) every time you do it!

Cells require energy to hoover up all the mess that inevitably occurs when you have just exerted yourself and, when you are right at the bottom of your energy barrel, all the time, forgetting to leave enough to clear and clean up after exertion, its tantamount to going over your energy expenditure for the day…leaving you in deficit for tomorrow, the day after and so on and so forth. This is why using up your energy, doing your max, does not constitute pacing, even when you only do it for a short time then rest; because its likely the rest you are giving yourself won’t be enough to get you back to where you were in the beginning and these things add up until you are in more and more deficit.

Its not helped by the fact you may seem to be perfectly fine while you are walking down the road or running that hand vac around the sofas or having someone stay over for a day or two (and, of course, other people see you looking fine, which doesn’t help with so much misunderstanding about ME/CFS being rife) but its afterwards that you get to pay for it, with copious amounts of interest added.

But without getting too deeply into the biological processes, I’m more interested in exploring the mental ones that keep us so enslaved to this idea that we have to do at least as much as we can do, all the time, like our lives depend on it. In fact, I suspect it’s so ingrained that many of us don’t even realise we are living in constant serfdom to the idea, most of our lives.

Think about it, just because we are talented in some area, the whole mechanism of our rearing and schooling will likely conspire to direct us towards that area, making it almost inevitable that we will end up choosing and using that talent over other things we would rather be doing…often with the consequence that a midlife crises happen further down the line.

I know this happened to me after I was ushered firmly towards choosing academic subjects because I could successfully pass exams, quite beside the fact my heart was telling me to do something creative. Yes, I could do those academic things…I had the “cram your head with info and regurgitate it” thing off-pat by the time I finished my A levels but it didn’t make me happy or fill me with a sense of purpose for my life, plus it forced me to use some of my weakest skills as someone who was unknowingly autistic. The only way I enjoyed success with this was to attempt to (visually) learn a whole lot of largely un-visual information, being mostly constructs and data, in a very short time and then use it to deliver what I felt other people wanted to hear, skills that were like the monster version of how I have always just about managed to get-by socially, only it doesn’t come easily and it exhausts me, burning out all my mental cogs to the point they send sparks flying and crash me, keeping me from my better instincts and creativity. The few times I tried to get truly creative with my academic attempts, I became too unconventional for exam scorers to relate to, so my marks slid down and everyone sighed with disappointment!

This whole bizarre approach to life left me confused and directionless by the time I left the academic machine and it took me years to rediscover the creativity that brought me some joy again.

However it doesn’t get any better from there because the same mindset that was once external had now become so internalised that I continue to hold myself to the same standards…even to this day. Even as I go through this extremely tricky year of repeated crashes, there is this near-constant voice in my head that keeps telling me I “ought” to be doing more art, that it would be relaxing, that it’s just what I need to be doing with my limited energy. In other words, I should be doing it…because I can do it (because I have the ability, I mean, not the stamina)…and there it is again!

Because, for the past 20 years, I’ve enjoyed quite a bit of success as an artist therefore I know that I “can”, but when I’m really being honest with myself I don’t really want to right now and its not all about lack of stamina (though that’s a big part of it as sitting up painting is very far from energy neutral). There is a real lack of desire to keep on doing it just because I once did well at it…and I should be alright with that, not pushing through the barricades. So why this internal voice nagging me all the time, coercing me to see if I could “just” manage to churn out another painting or two if I only do it in small bursts; the voice that nags me every day because I’m not doing anything “productive?” It’s such a harmful mindset when you think about it!

I still don’t know if I don’t want to because its run its course or because I just need a long break from it but the point I am making here is that the pressure to use any merest iota of talent I have can be so unrelenting it exhausts me, both during and afterwards…just the same as pushing myself out on a walk, just because I can, would have similar and perhaps exaggerated repercussions. Why should I live under the constant cloud of feeling like I am wasting talent, or energy, or time, or opportunity, if I don’t always use it…but then we all do, don’t we?

So getting back to ME/CFS, the same mantra is there in my head about things like going for walks. At the moment I have moderate ME/CFS according to the functionality benchmarks. This is no casual matter because, aside from being bad enough to leave me feeling pretty darned fatigued and unwell most of the time, its just one step away from severe ME/CFS, against which benchmarks I have been butting-up more and more often lately, so I know that I need to be so very careful about not overdoing it in case I risk going there. Its so important to recognise when you might be about to cross the threshold from mild to moderate or moderate to severe because these are the times you can actively do something about preventing it!

So the name of the game when you want to stabilise or improve, as I have been writing about lately, is to pace…always pace, always do less than you are capable of so there is room for recovery and always factor in recovery times of equal or, ideally, longer duration as each period of exertion. The cardinal rule is not to take on the kind of exertions that take longer than they should to bounce back from. When an exertion leaves you with PEM, which is the kind of fatigue that is both out of proportion to the activity and possibly delayed in its onset, meaning it might take up to 3 days to show up, then you know you are in risky territory and need to cut back or completely curtail the activity for the time being.

That’s where I currently am with walking…the slightest amount throws me into after-effects that are completely out of proportion to the mental construct I have of the exertion-level involved. I am currently in a state of PEM for a couple of short walks I did down the road over the weekend, my first in a while, because my daughter was home and I wanted to join her. I can feel in my body today (and last night!) just how hard hit I am because of much increased pains and flu-achiness that suggest I did some major exertion, not a few hundred yards and back with a slight incline.

Yet the fact of the matter is, I “can” walk. People can see that I am capable of walking. I walk all around my house, all the time. Just a walk from the kitchen to the bedroom is quite the hike and I manage this several times in the course of daily life. Yesterday, I somehow managed to to walk about 4000 steps, which isn’t a patch on the 10,000 or more I was doing a few weeks back, but its very far from being bedridden. The question is, if I can walk, should I be walking more than I am, simply because I can? Forgetting about the exaggerated after-effects, the worsened symptoms, the pain, the PEM that can last days or longer which would, ironically, reduce my ability to walk for a few days? Should I be making myself do it today because it’s possible right now rather than stick to the pacing guidelines? The answer is a very firm “NO”!

There is a part of me, and its not subtle, that is still telling me, even as I sit here on the sofa somewhat winded by the effort of getting out of bed, doing a handful of very gentle stretches on the mat and coming downstairs, that its a lovely dry sunny day and I should be getting out for a short walk around the village while the weather is decent. It’s not just saying this to me in some benign way like a suggestion, it’s guilting me. It’s even taunting me with ideas of getting fat or deconditioned and accusing me, oh so subtly because its not in so many words, that I’m being lazy and getting stodgy or, at some level, enjoying the excuse to lounge about doing nothing. Its even wondering, in the form of a niggle at the back of my mind, if I’m not just depressed or in a state of low mood and simply need to buck my act up, try harder, snap out of it.

These are exactly the kinds of responses to genuine ME/CFS symptoms I hear all the time on the ME/CFS forums where people in less understanding family dynamics than mine (I am so very lucky to have a loving and supportive husband who has taken the time to learn about ME/CFS and a daughter who entirely gets it) receive constant criticisms of these kinds from relatives and even husbands or wives who simply don’t understand what ME/CFS entails. The last thing I need to do is hear these kinds of criticisms and doubts inside my own head!

The problem is that we have all been so strongly ingrained with such thoughts; no wonder as the ingraining begins as soon as we can walk and talk…we’re taught to always give of our best or risk being excluded from the herd, shamed or shunned for not taking part in the singular communal objective, which is to be maximally productive and earn our place at all times.

So, if you have any energy in you at all then, according to this mindset, you are contractually obligated to use it…so goes all the brain-washing…yet when you have ME/CFS you really have to undo all of that mind tangle and dare to believe, and stand-by, the mantra that you must only do what you can afford to do and then recover from. If what you can do and what you should do are miles apart then you must always go with the should driven by putting your own health first.

Learning about your own particular should is so difficult after decades of cultural entraining but its a must for stabilising your ME/CFS and not pushing yourself into a more severe level of it.

This is what makes moderate ME/CFS the most dangerous place to be, in some respects, because you don’t look all that different to someone with milder ME/CFS, in fact you probably seem to be just as “normal” as a person without it because you are very likely upright at least some of the time and, yes, you probably could walk to a shop, carry a bag, do a few hours desk work if you had to…but, as I keep saying, that doesn’t mean that you should be doing those things. The factor that makes it so dangerous is that you are just so very close to severe ME/CFS when you are in the moderate category. One wrong move made a time too many, a little bit too much overexertion without the appropriate time to fully recover and you could be over that line and bedridden without energy to move the hair from your own face or turn over in bed. I’m not trying to scare-monger but this is the kind of understanding that needs instilling in the minds of misunderstanding family members or employers; you are but a hairs breath away from a potential worsening that may take quite some recovering from, if you manage it at all, so why risk going there when you could learn to pace properly and make some adaptions.

However, the good news is the same person is just one stage away from mild ME/CFS, just as the person with severe ME/CFS is just one stage away from moderate. The thing that makes the more positive movement from one category to the other possible is this ability to learn how to handle your own energy better and not give it away to tasks that you mistakenly tell yourself that you “ought” to be doing because you possibly could. By saving some energy back, all the time, you are starting to stockpile enough to set in motion those little bursts of recovery that enable cells to get a little bit better at functioning, day by day by day, until you start to find you are feeling more stable even after doing a slight bit more, and so the gradual improvements start to work things in your favour. You test-out, with caution, what you can get away with and you allow yourself to get used to that before you experiment again, always with caution, never with so-called moral obligations pressing down on you.

None of this would be possible if you remained stuck in the mindset of always doing as much as you can do. Just because I could put on my shoes and go for a walk to the shops right now, I can tell from the response to my coming down stairs and decanting breakfast into a bowl, that it would be a gross mistake to do that today, not least because I pushed it somewhat over the weekend and am now paying the exaggerated and delayed response to the small amount I did on Saturday. This alone is enough to tell me that I am not there yet…that the much longed for walks are still out of reach in this moment but will come back to me all the sooner if I stick like glue to the knowing that its much more important to listen to the gut feelings and the body clues than to keep on jumping up to the indoctrination of a lifetime telling me I “should” use up what I’ve got, be that energy, talent or, face it, they also want us to do it with our money and our life’s blood…spend it spend it spend it, they say….but we have to become the hoarders!

Holding something back for myself, and then getting to decide when and how to use it, is a whole other way of existing that could spin out into a far better way of living just as soon as I get myself out of this temporary ditch. So why not try to look at it as not being such a very bad thing to learn, and practice, for the duration of the rest of my life, thus turning it into a proactive objective in its own right for me to master!

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* There are various functionality assessments for ME/CFS, see link (the Visible app which I use has its own version which carries out a monthly assessment based on questions that you answer). The same link takes you to pages that offer summaries of Mild, Moderate and Severe ME/CFS, with links to the NHS definitions and NICE guidelines on the topics and other useful case histories and resources.

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.