I first learned about ME when I was 10. I didn’t know much about the illness but I knew enough that I though it would be a fun thing to have. I mean any illness that gets you time off school must be good right?
As it turns out ME or CFS or SEID or whatever you want to call it is not fun. It is rather boring. In fact it is mind numbingly boring. Yes, you would think being tired all the time is great fun. I mean it gets you away from all those boring adult responsibilities like work and school. But instead you’re stuck at home every day.
Soon the highlight of your day is whatever is on the television or what you’re going to eat next. You get up have some breakfast then spend the next 4 hours thinking about what you’re going to have for lunch. Then you spend the rest of the day thinking about what you’re going to have for dinner and before you know it the day is over, time for bed and the cycle to start again tomorrow.
The way to stay sane while having CFS/ME is by finding hobbies that keep the boredom at bay. I have a couple (you may be able to guess them) painting, reading and blogging. The thing is these hobbies require you to be at a certain level of awakeness where you can actually focus on the thing you’re doing.
I don’t blog because I want to be some famous blogger. I don’t post 3 or 4 times a week because I read somewhere that it was a good way to get views. Blogging literally keeps me sane. I have no doubt that I would have gone mad with boredom a long time ago if I didn’t have this blog.
But there are some times when I can’t write. And they drive me insane. Because those times I am at a level of tiredness where I can get out of bed but I can’t focus on anything. I hate those times. I have so many things I want to write about but can’t because I’m too tired. I’ve even tried to think of ways to get around it, maybe even get a friend to ghost write a post for me. But then you loose all the fun of blogging. I enjoy it because I do all the work.
Sometimes I wonder what my 10 year old self would have thought about this whole CFS thing. I think she would have loved it. I mean time off school and nothing to do all day but read, yeah she would have loved it. But she didn’t understand the realities of living with CFS and I think there are many people out there like her. And that’s okay.
TL;DR I was tired so instead of writing a blog post I wrote a blog post about how I couldn’t write a blog post because I was tired.