I've decided that I want to write things down for a couple of reasons. One is that I find it helpful to put it down to talk about it in a way that I can. The other is so that people can get some understanding about what it's like. Maybe there are other's who feel similar who can relate? Or maybe I can just let people know that living with a chronic illness is tough but not impossible.
I am happy to answer questions. I'm happy to connect to others. I do not want sympathy or to be anything that I'm not. I am not brave, strong, amazing or any of those things. I am also not a whinger, complainer, attention seeker.
If writing a blog is attention seeking then it's doing it in the right way. I want people to know what it's like and maybe help others.
It's My Life
I suffer from a rare neurological disorder called Stiff Person Syndrome. It came on quite suddenly, although, with hindsight I can see I had warnings that something was wrong. I hospitalised on 1st |Jan 2016 and kept in for two weeks. They found lesions (inflammation) on my spine which they put down to Transverse Myelitis. When I didn't recover they found a rogue anti body called a glycine receptor in my blood. I was then diagnosed with Stiff Person Syndrome plus Progressive Encephalomyelitis With Rigidity and Myoclonus in January 2017.