Showing posts with label recovery. Show all posts
Showing posts with label recovery. Show all posts

Sunday, 11 July 2010

First spoonie Sunday!

First of all a quick explanation for readers who don't have ME/CFS and are wondering what on earth a 'spoonie' is: it comes from this great explanation of what it's like to have a chronic illness and trying to manage it on a day to day basis http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/ Although written about lupus, it really rings true for M.E. in my experience and it would be great if you read it!

So a quick history of me and M.E., I was diagnosed about 3 or so months ago but have been suffering with symptoms for about 2 years now. Interestingly, the more I learn about this illness, the more I wonder if I have actually had it on and off mildly for years. For me it was a gradual onset. I lived in London, had a really stressful and demanding job involving really long hours and lots of travel and seemed to pick up every cold/bug/infection that I came within a sniff of. I was always a bit tired from burning the candle at both ends all the time.

But then the tiredness came like I've never experienced it before. I needed to sleep in the daytime and my muscles and joints ached for no reason.I constantly had either a sinus infection or a kidney infection and sometimes when I was really lucky, I'd get both of them at the same time. I flitted between days of insomnia followed by bouts of hypersomnia where I'd be sleeping every second I could just so I could keep working.

Then after a particularly rubbish time at work, the company I was working for ran into financial difficulties and went bust. I remember sitting at home (in the noisiest flat in London, which really helped things as you can imagine!) with a face covered in coldsores, aching everywhere and looking for another job when I decided that something had to change.

I applied for a place on an MSc course in Manchester, got a temporary contract job for the summer and then in September made the big move oop north. My symptoms were still bad but when I went to see the doctors about it they put it down to a stressful year and a demanding job and I though they must be right. In October I had an almighty illness - raging fever, sore throat, splitting headache, limbs so heavy and so little energy that I couldn't get off the sofa. It was round the time of the big swine flu panic and it looked like that's what I had, although of course now I suspect it was just the worst flare of symptoms that I'd had till then.

Anyway, even though I recovered a bit from that, I still felt dreadful and was struggling to keep up with my masters and the freelance work that I'm totally dependent on for keeping a roofover my head and filling my tum with food. I went to the new doctors in Manchester quite in despair by this point and was lucky to get a sympathetic doctor who suggested early on that it might be M.E. and started the process of testing.

Unfortunately when I went back for the results, this lovely lady had retired! I then saw a decidedly unsympathetic dr and many many months later, I finally got a diagnosis and just this week (after seeing yet another Dr!) I've finally been referred to the specialist M.E. clinic. Hurrah!

The road to recovery is a long, sometimes frustrating and sometimes upsetting one but in the spirit of the Happiness Project, I'm going to focus on the positive things. If I hadn't been ill, I would never have been brave even to quit work and go freelance and do my masters which I had wanted to for years. I wouldn't have started listening to my body and realising it was unhappy but would have probably just kept on pushing it too hard for years. And finally if I wasn't ill, I would never have met some lovely people!

Right, long old post from me so going to have a little rest now but hope you all had good weekends and hopefully see you for Magic Monday!x