Sunday, April 09, 2006

Here's One I Tried Earlier

Since I started this blog, I've had a good few people with ME (known as PWME in the jargon) write to me and say they like to read it; and of course I have healthy friends who read it too. Sometimes I make the mistake of wondering what the readers want and I don't know where to pitch the blog, in case, a) the Healthies get bored of reading about ME and b) the PWME think I belittle the daily struggle of life with ME.
And yet, I live this dilemma myself. I just got back from a friend's wedding where I pushed myself through the day on adrenalin. I had great fun - the best fun I've had in ages. I was wearing smart clothes and talking to people who didn't know I was ill. I was pretending to be well. ME was the last thing I wanted to think about. Being just well enough to escape reality for a few hours was...intoxicating. Ha. Funny how that word just came up. Today, I'm back to the average 'hangover' and normal collapse of ME. But those rare moments of borrowed escape are what I live for. Would some scientist please just find out why they don't last?
PWME are often maligned by the misconception that they are not trying hard enough to get well. Ouch. Here's a summarised list of 'Things I tried earlier...' I'm guessing I've spent about £10 000 over 20 years.
anti biotics
anti virals
hormone therapy - cortisol, thyroid etc (limited help but not sustained)
various drugs that they use in Parkison's etc - amantadine
vitamin injections
just about every supplement you can buy in a health food shop or online
diet - wheat free, dairy free etc
acupuncture and all those £30 - £40 an hour therapies
I've done the embarrassing things like sending a lock of my hair to a homeopath who promised his potions would get me 'on my feet in 4 weeks.' I've had a faith healer tell me that my muscle twitches were the devil inside me. Each time, some doctor or therapist tries to convince me that their path really is the right one.
One of the only things that does seem to help my energy levels is warmer weather. It's not fool-proof as I've had relapses in the summer too, but in general I love Mediterranean weather. That's why I live in Scotland.

1 comment:

Sue Jackson said...

Hi, Ciara -

I saw that your blog is now posted on the Phoenix-CFS site as well. Isn't it amazing to read so many similar experiences in one place? I'm glad to hear you had so much fun at the wedding - and, of course, so sorry to hear you're now paying for it. I hope you recover back to "normal" soon.