Person with ME

Diagnosed: 2004

I am 31and have been suffering with M.E for two and a half years now.

When I first fell ill I was a manager for a health spa working long hours and stressed. I was also going through a messy break up with my partner of 6 years. I had severe pain in my legs, muscle twitching all over, my whole body ached, I was confused, couldn't string a sentence together and couldn't remember if I'd ate at night never mind trying to cook. All I wanted to do was sleep. I used to love reading and I couldn't read more than a few sentences without shutting down. The doctor put me on anti depressants and arranged blood tests. The tests showed I had developed glandular fever at some point in the past but nothing else.
The months passed still unwell, unable to work and I was made redundant from my job, I took them to court for unfair dismissal and won my case. The stress set me back and combined with battling doctors for more tests and trying to convince them I was not depressed but ill was even more distressing.
You desperately want to get better, get back to work, to the life you had before, to socialise, to be able to read and cook and have conversations without your words getting all mixed up. To get through the day without collapsing on the sofa exhausted. My sleep pattern is erratic and I go through stages of sleeping 14-16 hours and other times I am so exhausted I cant sleep, tired but wired. The muscle twitching and constant pain in my legs is the worst. It keeps me awake at night and then I'm even more exhausted the next day.
My doctor told me to go on prozac and told me there was no specialists who I could see. I changed my doctor after that, I refused to just accept this was it, I wanted my health and my life back.
I saw a new doctor who referred me to the M.E clinic at Bristol. I had to go through a brain scan, spine scan, an emg and other blood tests. They found I have peripheral nerve hyperexcitability which causes muscle twitching but anti convulsant medication has not helped. It took nearly a year to get seen at the M.E clinic as it took so long to be referred for the tests. However although the clinic hasn't helped with further tests, medication, etc it was useful in getting me to accept I had M.E. I was in denial up until this year and tried to keep going back to work, I'd last a few weeks in a new job then had to give it up through sheer exhaustion, each time I was setting myself back and relapsing. In April this year after a hellish time trying to work I accepted I had M.E and gave up work.
I still feel dreadful each day but now I might have 1 good day where I feel ok to leave the house. The payback always comes the next day though. Giving up work has allowed me to work within my own limits, lets me rest and do things as able however the financial stress is awful and I've had to give up living on my own.
I am also going back to live with my parents so that I can try and rest more and get help with things when I'm not fit enough.

This is not the life I want, to be 31 with no job, living with my parents and other people's ignorant attitudes , "everyone gets tired", "you just need to sleep less" makes me mad. The governments lack of funding into research appals me and the doctors I have seen know less about M.E than I do. The best help for me was
Charles Shephards book which is a bible for anyone suffering from this awful disease, I'd recommend anyone with M.E to get this book. I do realise that I could be a lot worse and there are sufferers out there who are bedridden and have no life whatsoever. I am able to read and cook again, most of the time, and have started painting to take my mind off of how I feel. I try to stay positive that I will get better and be able to work part time soon. I'm just taking things one day at a time and not worry about it all too much as otherwise I'd just make myself worse,