Trying to find meaning and deal with boredom
Pacing and avoiding PEM is the only thing I’ve found that really makes any difference to my condition. As a result of pretty much nonstop pacing since November I’ve not had any long periods of PEM (only a couple short 1-2 day long ones that I recovered quite easily from).
The only downside is that I basically do nothing all day. I can’t really play video games nor watch TV/film or consume much YouTube (short vids here and there). I can’t do much physically and spend almost all my time in bed. I can’t really read books. I don’t really have any hobbies that keep me busy. As a result, my days are largely filled with … well, nothing. Scrolling on my phone. Resting. Listening to gentle music or an audiobook when I can handle it.
I’ve kind of got used to it and it’s nowhere near as agonising as it was when I was first getting sick. But it still sucks. To be able to feel semi okay all the time I basically have to do nothing, and if I do something to cure my boredom then I’ll pay the consequences. So I just lie in bed all day, doing nothing, and I wonder how long I’ll be doing this