Random Post about Energy

I am meant to be sleeping, but instead my brain is going over lots of lots of different topics (also, my night time meds haven’t kicked in fully yet as I took them late).

One of the main symptoms of M.E. is fatigue, tiredness, lack of energy. All those words don’t really describe what it’s like, but it’s late and I can’t think of better ones. Anyway, I have been overdoing it the last few weeks. Not just in the “one event so I crash” way, but also by doing too much on a daily basis so slowly my symptoms and illness get worse.

The main culprits are sitting up and playing World of Warcraft. And that sucks.

I really enjoy playing World of Warcraft. It’s a game I started playing before I got ill, and that shows because I’m still able to play it to an adequate level, even though I’m pretty ill and struggle to learn anything new. It does take a lot of mental energy though, especially for dungeons or raids, both of which I’ve done in the past week. I enjoyed them- they were a lot of fun. But it’s also made me mentally exhausted, which means that I’m finding it hard to find the right words (especially for verbal speech), remember stuff, and to concentrate on anything. I really don’t want to give it up, but I do need to cut out the dungeoning and raiding, which are some of my favourite parts, as it’s when I get to play with my friends. My other problem with it is I spend too long at a time playing it, which also makes me worse.

Sitting up is a difficult one. I feel a lot worse sitting up than I do lying down (or even in a propped up position in bed). I get dizzy, feel more nauseous, my back and neck really ache, and it’s painful. It’s also the only way I can do anything constructive. Sitting up in my wheelchair lets me go outside. Sitting up at my computer lets me play games, which are an awesome distraction (as my laptop can’t handle them). I’m not yet too ill to do either of those things in moderation, the problem is I do them too much, then I get more ill. I’ve been trying to ignore as many of them as I can (only way I can cope) but some of them are difficult to ignore. Like spasms that mean I can’t use my hands, or the inability to move my arms or legs, or choking every time I try to drink water. The pain, the nausea, the weakness, the dizziness I can normally block out for a while (had a ton of practice of blocking out bad feelings as a kid) but those ones I can’t.

Trying to figure out where I am in terms of the severity of my M.E. is hard, especially because with the blocking stuff. I can’t walk. I can stand for a few seconds, sometimes. I’m in agonising pain all the time, but at the same time I’m able to deal with it, at least temporarily. Oh, and I have to spend most of the day in bed, or I crash. So that would mean severe, yes? Except I’m not completely bedbound, and not always housebound. I can go out whenever I’m well enough to sit up, even if the very act of doing so makes me worse. And I even made it into college a few days this month, even if that has made me worse overall and I’m now doubting my ability to even complete the course at home. In the next week I have two days of going out: a doctors appointment on Tuesday morning, and on Thursday I have the CFS clinic in the morning and a hospital appointment in the afternoon. I’ll be able to attend all those things, so I must not be more than moderately affected. But then I can’t hold a toothbrush for long enough to brush my teeth, and I can’t lift my arms high enough to dress myself or wash my own hair. It’s so difficult to judge.

I know there are a lot of people with M.E. who are a lot worse than I am. I don’t want anyone to feel sorry for me- I know things can be a lot worse. At the same time, I think I’ve been trying to kid myself that I’m a lot better than I really am, and that’s hard. I don’t want to admit how bad I am now. I’m so good at ignoring how I’m feeling that the only way I can really tell most of the time is if I make a conscious effort to find out. And then I don’t like what I see.

I know I need to rest more, but I don’t know how to rest. Even when I’m trying to rest, my brain becomes hyper aware of everything going on around me, and I actually even less rested afterwards than if I spend the time reading Twitter. That’s something I’ll speak to the CFS clinic about on Thursday.