@justy what was your activity level at the first time of the disease?
How did you recovered?.
I know u asked another the question but for me it was with Aggressive rest therapy. I accepted I would die cause I was so bad with the illness.. so stopped stressing about potentially dying.. and then as a consequence of being okay about dying I stopped even trying to keep myself awake for 20-30mins per day to eat and drink. That then stopped me needing to go to the potty by the bed once a day too. So in doing this, I actually was conserving the only energy I had to do anything. (I think I got to the point where I was then using my bowels only about once a fortnight). I do not recommend anyone doing what I did, I know I must of been very close to death.
So I was going 3 day periods of just laying eyes shut and sleeping as a coma person would do (before this I was actually having comatose periods for many days at a time without waking and I was aware when I came out of a period like this.. I was able to do something small eg sit up for a few minutes, so figured doing nothing at all was helpful to my condition even if it was a drastic thing to be doing nothing. I was going days without even drinking at times...it was either going to die or survive).
Cause my ME was so bad, I had come to the realisation that EVERYTHING I actively did was making me worst and my stopping bothering to push myself to eat or drink was my reaction to that.
After many months of I was able to start eating a couple of times per day in bed and drink when I needed too without over extending my energy. .. then after some months more, I finally started to have more energy to do something else. but I kept myself laying in bed and didnt waste any energy trying to listen to radio or watch TV. (I probably layed in bed in silence for about nearly a year doing near nothing, TV was too much for me anyway).
I slowly extended what I was doing as my energy improved, keeping myself in check.. forcing myself to take naps even when I didnt feel like I needed them any more, keeping things still and quiet around me etc etc. It was a mammoth effort to recover and I could of never did it if I didnt have my 10? year old daughter looking after me and a friend who would shop for us and leave the shopping at door for daughter to put away etc.
fully bedbound for 9 months (no choice with that, I just couldnt walk near most of that time). them further stayed in bed for longer .. my choice to try to recover some as doing nothing was the only thing which helped me (I must of spend most of 2? years, it may of been 3? in bed). VERY slowly doing more as I improved when I truely felt some energy there that I could do then without paybacks.
My recovery was due to me doing
everything I possibly could do to try to avoid crashing..and hence then allowing myself to instead get better and better. It took YEARS...
Ive heard from quite a few others over the years who also recovered with aggressive rest therapy. (Im not suggesting anyone to cut back to the degree I did, I was at risk of dying but my ME was so bad that was at risk of it killing me anyway)