Sunday, 16 February 2014

Diagnosis, journey and finding information

I was first diagnosed with M.E in 1989. It had been a long haul of GP, specialists, tests, retests and general faff lasting for nearly a year. I was going down with infection after infection, and each one was hit with antibiotics. I know now that these weren't actual infections, although I had all the symptoms, including swelling and white 'infected' patches in my throat. They were the same M.E flare ups I get now, producing the high temperature, sore throat, sinus inflammation and D&V that I still get when I've overdone things to this day. I used to cycle 28 miles a day, walk 5 miles with my Mum's dogs, in '86 I beat the qualifying time for the Olympics swimming front crawl. Back then I was just starting out at the bottom in the civil service, wanting to work my way up and make a name for myself, so I pushed through the illness and worked on. A lowly Administrative assistant has a long way to go in order to get anywhere. Eventually I had to accept that I wasn't going to be able to continue, and 'retired' at 19 years old.

I remember the diagnosis to this day. I broke down and was offered counselling. I refused. I broke down because I had just been told that there was no end to this; that there was no treatment, and although I might improve, I might also get worse. A death sentence would have been kinder at that point. Talking about it would have been exhausting, and would have changed nothing. There was very little information back then. I was put on Prozac which made all of the fatigue/fog symptoms worse, but I was in no fit state to argue. The years before my first pregnancy, and first remission were the lowest point for me. I had no help; my then husband was convinced that it was all in my head. I would roll out of bed and crawl to the loo, often not making it. Housework was impossible. I had no life.

My marriage ended when I fell pregnant. And then the miracle of remission. I never felt as well as I did when in the second and third trimester of pregnancy before or since. After each pregnancy my health began to decline again, although I learned to hide it. I hid it so well that during the end of my second marriage, when I was trying to explain how I would survive without him, he got the impression that I would lie about symptom levels. He never did see how bad it really was for me, and to this day he tells my daughters that I could get up to Dundee to see them if I wanted to, and that I'm not really ill.

This relapse has been the worst and the longest lasting. I was working in a fish processing and packing plant and got a chest infection which I tried to work through as there was no sick pay at that job; two weeks sick and you got the sack, no comeback. Out. I've had several operations for other health issues, including a hysterectomy and gall bladder removal. Each general anaesthetic steps my levels of activity down. Right now I am practically housebound, I have double vision caused by muscle fatigue which makes me unfit to drive in my opinion, it is not permanent, and is variable, so not notifiable. I am unable to tell how bad my vision will be, because I can't tell how bad my fatigue will be at any given time. Better to be safe than sorry.

I have built up a clearer picture of how to manage my own illness through years of research, both in libraries and now online. Some of the information out there is good, some of it is bad, some of it is dangerous and some of it is downright weird. I have learned to look at it critically, seek corroboration and remember that if "it seems too good to be true,it probably is." M.E. is a real illness that produces real symptoms. I am in general as ill as you would be with a viral infection for which you would seek GP advice. Not 'man 'flu' or a cold, but shiver-sweat-vomit-exist till it passes ill. Except that for me it never passes. I am currently wrapped in blankets laid propped up on the sofa with my eyes shaded. I am dictating this to the computer using speech-to-text. I am not well enough to go anywhere, or do anything. Today I can't even lift a mug to take a drink. It is not that I believe that doing more will make me ill. I am unable to do anything because I already feel ill.