Right on, Gerwyn!
One of the most important facts that you can know about this illness is the amount of damage that can be done by pushing me beyond my capabilities. This is particularly vital at times when I'm very under-par - e.g. in the mornings, because I am so limited that the tiniest little thing can prove to be too much for me.
I absolutely refuse now since many years to make any appointments with anyone for any purpose in the mornings (which I can make binding via having my site ) .
And from 2002-2006 I woke up and then could not do anything for hours except lay in bed very stiff all over my body, hardly capable of movement and with pain, until that sort of thawed out. I called it 'ME rigor mortis', for myself (Du: "me lijkverstijving"). Very unpleasant. (L-carnitine seems to have a positive difference here: I am freed from that, at present and the last few years.)