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 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


  1. Ditto living in London, stressful job, slow onset, struggle to get diagnosed, blah di blah.

    I'm so glad you've finally got a referral. The ME clinic at Wareham in Dorset really turned my life around. It's a slow climb out, but if you do the work you can really see some recovery. It's been more than that for me though, a new understanding of who I am and what living is. I wish you all the best with it.

    Oh, and another similarity, I'm now ooop Northish, near Telford. Well that's North for this Southerner!

  2. Me, too, stressful job (sahm of six kids lol), slow onset, struggle to get diagnosed, blah di blah.

    I'd love to hear what is helpful to you during your recovery. I had stabilized for awhile, but then I had a huge relapse that dropped me from 50% functionality to about 25%. I've struggled to recover any percentage points since then. I think I've cleared my life sufficiently that I may be able to see some progress now.

    There are hidden blessings that come with this disease. I never would have thrown myself into writing like this without it -- and now I have a rough draft of my first novel under my belt!

    Best wishes on your journey!

  3. Thanks so much for sharing your story with us. It's always interesting to hear someone else's ME story because all of our stories are so similar.

    You're probably right - many CFS experts believe that even abrupt-onset cases (like mine) had some signs leading up to it for years, just as you've described. We often write off those early events as "viruses", but when you look back, you can see the pattern.

    I'm so glad you've finally found a doctor to help you. Two things you should consider to start treatment: treating sleep dysfunction and treating orthostatic intolerance (which affects over 95% of people with CFS/ME, even if you're not aware of it). I wrote two blog posts about these two areas, which can both help improve your overall condition. Since you're new to the blogging world, you might want to check these out:

    Although having a good doctor helps considerably, I've found with CFS that you really have to be aggressive in guiding your own treatment and being your own advocate. there are very few doctors in the world right now who understand all aspects of CFS and can treat it effectively.

    Good luck and please feel free to let me know if you have any questions or need any help -