Yes, this. Haven’t shared much about having ME for a while but saw this and it struck a chord. One of things that is so difficult to deal with is what she says about the fluctuation between just about bearable and awful…it’s utterly exhausting.
“It can still blow my mind; the fluctuation between utterly dreadful and just about bearable. It swings like a pendulum from ‘my good’ to ‘my awful’. There will always be a consequence for activity, for that is the very nature of the beast that is M.E..”
When I feel down and depressed because I can’t do anything when I am so ill, it becomes more and more difficult to find the will to keep going. I can tell myself when I feel that bad that I won’t always feel so unwell, and unable to cope, that I’ll soon feel better for a while, but knowing that feeling so ill, which brings with it the isolation and loneliness because I can’t get out and about, is undoubtedly going to happen again and again and again can just feel too much. The last time I felt like that was the closest I have been to giving up (there are so many people who had ME who have ended their own lives), even though I am so happy with what I am doing with my life at the moment (or perhaps because of that?).
Somehow I start feeling better and feel positive again, but the balance of trying to make the most of things whilst trying to keep the being wary of the next crash at bay can be a tricky tightrope. The constant up and down is so exhausting and so bloody boring, like ground hog day. We have to be so resilient to keep going through it.
Just thought I’d share. There is still such a misunderstanding of and not enough support for people with ME.