A Day in the Life of an Adult With Fibromyalgia
Erica is 50 and has had fibromyalgia syndrome for about 15 years, though it was only diagnosed nine years ago.
“My first GP was very sympathetic but wasn’t very helpful – I had all kinds of tests and he couldn’t find anything specific wrong – they suggested rheumatoid arthritis or multiple sclerosis. However, I changed GP when I moved and my new one knew straight away what it was, and has been really helpful, trying different drugs and other therapies, and advising me on exercise and relaxation. She’s even been helping me with coping strategies for the pain – she referred me for cognitive behavioural therapy and that has made quite a difference.
It’s ten in the morning and I’m off to work. I’ve been able to keep my job in an office, but I have had to reduce my hours. Luckily, I’ve been able to get by on less money, but some of my friends with fibromyalgia syndrome have lost their jobs and have had to go onto benefits, and they are really struggling. But then again I have friends (some people call themselves ‘fibromites’) with fibromyalgia syndrome who hold down a full time job, with occasional time off and some days working at home.
It really depends how bad your symptoms are and how good your managers are. Fibromyalgia Syndrome does leave my brain in a bit of a fog some days, and I cope with making lots of lists and notes. The number of yellow sticky notes around my computer makes everyone laugh, but it keeps me going some days.
Lunchtime. Some of my colleagues are going out shopping but I’m just too tired today. I’m going to have a lie down in the sick bay during my lunch hour – my fibromyalgia syndrome sometimes makes me really tired, and a quick nap can be just enough to get me through the afternoon.
There are some days that I really can’t make it out of the house, but my colleagues and boss are really understanding. Sometimes I can make the time up but occasionally I have to take a day off sick. I did have one colleague who got a bit stroppy about my days off sick, but I explained all about the disorder and what it involved, and she’s actually started fund raising for the Fibromyalgia Association UK!
There are many things I can’t do any more – I used to run marathons and some days I can’t even walk to the end of the road – and that is very frustrating, but I try to find other things to keep me fit and busy. They’re just not as energetic as the things I used to do!
It’s four in the afternoon and I’m going swimming. The pool where I swim is quite warm, and I find the water supports me. Exercising makes me feel so much better, and helps me sleep.
Two in the morning, and I’m awake. I’m not sleeping very well at the moment – poor sleep is very common in fibromyalgia syndrome. There have been times when I’ve been really depressed with fibromyalgia syndrome, and that’s always worst in the small hours of the morning. My family have been really supportive, and I’ve started taking an antidepressant to help my sleep – and I guess as a side effect it might help my mood too! I’ll read a book for a while and then I should drift off."