Suggested:
and can and usually does result in compromised or lost function.
Is it worth adding something about the further reduction or loss of function during PEM usually being temporary*, but it could be made semi-permanent/permanent by inappropriate management?
*Given no further provocation of the existing PEM, and sufficient time and rest to let it settle down, as far as it is going to.
I think whilst my mindset for years was always pride-wise thinking it isn't that I'm an incapable person, just this PEM-thing
That I've of recent years certainly been able to study my body more.
And I know a little while back I was in a situation where for something that was absolutely essential to me I had to help with lifting something - ridiculous for my health, but the alternative being worse long term. But that it could be managed to be limited in time and weight ie minimise as I was helping someone else, and just for a number of seconds. And then I'd basically have to plan in very careful recovery which would properly take weeks at least, but in the short term mean intense taking-the-PEM very seriously rest.
I managed it, so yes it wasn't that 'my muscles didn't work'. OK so that part of the conundrum about 'what we can say' bla bla has been confirmed (though no idea what it would have been when less ill or why).
BUt... the interesting part of this story is that, as is ME-bad luck, something had been done wrong and I had to repeat the exact same task later. And because of what the task was for my rest would be impacted as not as good until that had been completed, so I had a trade-off then in every day I couldn't do it again I'd be having not as good rest, but I needed enough rest to attempt it again.
So 5 days later I attempted that exact same lifting task. I didn't feel fully better, but phew I'd managed to do it without feeling like my muscles were damaged and they were now probably back (at first of course I can't even lift a drink to my mouth, literally, and my arm shakes as I try and force it).
It was a completely different kettle of fish to the first time. Even though I at the point of going in to attempt it had a completely, genuinely convinced mind that whilst the payback would be more the lifting ability would be the same. It 100% wasn't.
And in fact I'd say that the muscles I'd used to do it efficiently (ie using the right movement) before turned out to be utterly empty, not
feeling empty but just not there as I used my practised-for-20yrs technique of bloody-mindedness (pretend you don't have ME and are back being the person you think you are who can do all sorts and will tackle and complete and overcome any challenege for a moment).
I ended up twisting and ripping all sorts as I was clearly having to try and engage and use other areas in my mind's determination to complete this task by hook or crook and as I was lifting one end of somethign by a certain point because I was in the middle of it and there was no alternative that wouldn't have involved more harm than for that task to complete. It was clear that even using the same body movement consciously it was different parts of my arms, sides, back, bits of leg in strange places that were having to get involved because the muscles that would be the strong ones that can do it 'on the first occasion' now weren't there.
I sort of knew this anyway, even from when I was more moderate and my gait when I was in PEM but having to get to a shop for something desperate or stuck in a conversation and feeling awful. I just wondered with how much the feeling awful and other symptoms was playing a part on balance and so on.
And of course adding it on top of the PEM before was expected to be a bad idea (would never have done it if it wasn't the best of the worst options) and it has been. That cumulation is more than the 'sum' of the two events, which is what laypersons assume, or even 'the sum + a bit extra'.
I find
this is the problem that we find
noone takes seriously in the consequences, that if they keep ignoring us saying about PEM and ignoring giving us the chance to recover from that PEM that it is somehow a shock again to them when as promised we are x% worse in xtime and now are less functional, just like the last 100 times they just ignored our voice.
I find this 'as if I'm speaking into the wind' when it is saying something that is fundamental to my safeyt but seems to be the thing most people care about least and would pay more attention to if I was talking about a sitcom or the weather, the most de-existing part of the illness and blame the bps entirely for choosing to do this to me.