Once in a while my brain wakes up

On writing with a broken body and a brain made of mush

Most of the time, writing with severe ME is impossible. My brain is so jumbled I can’t think straight. I can’t form ideas, and when I do, I don’t have enough energy in my system to find the words to fit that idea.

Once in a while my brain ‘wakes up’ and I am able to write on demand, or I can do a bit of research, or note-taking or idea generation. If I go deep — which just means comprehending stuff at a level whereby I can write about it — my brain goes haywire at night and I can't sleep. I close my eyes and there's a disco inside my brain, lights flashing, broken pictures zooming around from one corner to the next, laser beams in different colours. So I lie awake with my eyes open and the next day my brain is mush again. 

It makes it very difficult to write anything on demand, like the book I’m working on about the stigma of women’s misunderstood illnesses and how it makes us sicker. 

So I’ve decided I’m trying something new:

NOT writing on demand, or with deadlines or on a schedule, but writing when I feel like it.

In fact that’s what I’ve been forced to do all along.

So this substack is about my thoughts and experiences with writing with a broken body and a brain made of mush. I don’t know how often I will write or how long or short it will be. It depends on my brain and the energy available in my body.