Because there's a mountain behind our house and not a field or a track, I get a massive insight into my fitness level and how it changes. Basically, if I have to stop to rest at the little stone bench, I'm like WTF? I could power up past this, like, yesterday!?
Well, okay not "yesterday", that's hyperbole, but it's almost right: In fact it's is a real eye opener to see how just a day or two skipping-off and avoiding walking suddenly causes a massive contraction in what I am able to do.
Fitness, for me, is massively sensitive to inaction. I had no idea. Really.
I mean; I've done, what? Three million steps since the end of march this year. But if I take just a day or two off the heavy stuff (IE I walk less than 5 miles/day) suddenly, I can't make it past the little stone bench without at the very least pausing to regroup.
This, Post Inactivity Malaise, is silent. It is real and it is profound. I am simply shocked by it.
And people with M.E may, rightly, say: "But we can't exercise because of Post Exertional Malaise!!" and I'd agree, having had M.E for 35yrs: I know exactly how horribly severe symptoms can be in response to even minimal mental or physical exertion.
It is ironic, I think, that as M.E patients increasingly work to eradicate medicine's viewpoint they trash the idea of de-conditioning (Post Inactivity Malaise) and just how important it really is, for:
You can only understand M.E when you get the idea that M.E patients are damned if they exercise and damned if they don't.
It is shocking to me, now, to know just how much damage I was doing to myself through inactivity. I was aware of certain things, of course, I became over-weight, my shoulders froze and my knees started to buckle. But it has been brought home to me that inactivity was causing damage across the board, systemic long-term damage.
I am not here to blame you (or me for that matter). I know very well that M.E patients get kicked in the nuts (or cash equivalent) when they over-exert and I also know just how incredibly low the bar for over-exertion can be set.
It is hard to imagine giving my younger self any useful advice on this. Other than treating M.E; there is nothing much that can be done. I guess I wish I'd kept my joints moving more and sat in this chair less, but aside from this, the seeming inevitability of Post Inactivity Malaise is, for me, a fundamental part of what makes M.E such a devastating condition.
In the absence of a cure, I guess I have to default to the advice I gave on my 1990s website. Long term, an illness like M.E can have a depressing effect on one's outlook and mental health and this is true of fitness and physical health too.
The advice I used to live by was to occasionally break the rules, blow the energy budget and... pay the price.
The price, in terms of symptom increase and function decrease is worth it sometimes. The memories and experiences you gain; they restore and rebuild your mental health and they keep your spirits up through the darker hours. Likewise; getting the body moving is hard, but it is necessary for human health.
