This is a little introductory post to something I may or may not keep - I'm a bit rubbish at updating things like blogs (although I never used to be) so it may fall by the wayside if I am unable to come up with something constructive (likely).
I am 26, nearly 27 (something that scares me on a regular basis) and I live in Norfolk. I have had M.E for what feels like a lifetime, at least ten years. For the first year of that I became unwell and had to stop doing much of my education. I slowly regained some energy and for a couple of years was able to work/have a social life, albeit at a bit of a slower pace. In 2006 I got glandular fever, and ever since then I've struggled with work, health, mental health, all sorts of different things. It's been tough and I've hated a lot of that period.
Which brings me to now. Lately, I tried to go to work, as my social security benefit that helped me when I was too sick to work was taken away. As a result, I have relapsed to the point where I am largely bedbound. I am able to complete small tasks but of course, suffer the next day.
I want to try and challenge misconceptions about this illness; to make people more aware of what I am going through, and for people to stop saying "oh, you'll be better in a week". The illness is much misunderstand, even within health professionals, who still see it as a psychological weakness when there is much evidence that it is neurological. If I was to say I had a psychological problem, people would be far more wary than if I was to say I had a brain illness. This has to change. Something needs to be done. It's hard enough that there is no active treatment for people who have this illness, and the last thing we need is people to be judgemental and critical of those who do have it.
I am not sure what exactly I can do, but I want this to change. I do not want people now, and in the future, and especially children who are labelled like I was, as lazy, inconsiderate, stupid or just falsifying illnesses. If there is a small thing I can do, I will try. I am going to think about doing a christmas fair, but I'm really not sure how to go about it. Brain fog persists and I'm a bit rubbish with ideas!
Anyway, that is a little about me. Hopefully I will come back and update you all on how I am doing.