I’m still nocturnal, so when I say day I mean the period of time I was awake (starting around 7pm last night).
I have just had the best day physically for about 3 months. My pain was well managed with painkillers. I managed to eat with a spoon, only dropping it occasionally and the hand spasms being short lived. I sat in my computer chair for two periods, both of several hours. This I was able to do as I didn’t feel worse for being in it- normally within a few minutes of sitting up I start getting very dizzy, more nauseous and generally feel more ill, but today it just didn’t happen. I probably spent far too long sitting up because of this, but I still feel okay now. I even forgot temporarily that I couldn’t walk, so fell over in the attempt 😛
I’m not sure why I’ve had such a good day, but I suspect that it may just be that I’ve been listening closely to my body the last few weeks. I’ve had no external commitments, so I’ve been sleeping when I want, eating pretty much when I want and not pushed myself to do anything that may make things worse. I’ve also let Johan do more for me, and have tried hard not to feel too guilty about it.
This may be a one off. I may have really overdone it today and end up relapsing again. I hope not. M.E is often an unpredictable illness, and since we don’t know the cause we can’t be entirely certain what makes it worse or better (though over-exertion will normally make things worse). Up until now, my general trend has been downwards, gradually getting worse with occasional relapses that are much worse, but which I normally recover from (though not always back to where I was before). That has been the case since I first got M.E over 2 years ago. Some of that has been caused by me being too stubborn and overdoing it, especially with college. Since I quit college in October, it was hospital and medical appointments (including ones to see the CFS clinic and my specialist) that made me overdo it. The only period of relative stability was during the summer holidays this year when I didn’t have college and didn’t leave the flat (and I was doing much better then than I am now). As soon as I started going to appointments and then went back to college, I declined rapidly and ended up nearly completely bedbound (only able to get out of bed for very short periods of time-no more than 10 minutes without getting payback).
I am hoping that today’s improvement is a sign of things starting to get better. I still have a long way to go, as even today I’ve had to have Johan do a lot for me. Cognitively I’m still not even back to where I was pre-relapse, and I feel stupid and very confused most of the time. I will take anything I can get though.