Saturday, 14 August 2010

DANCING WITH THE SANDMAN: UK Blood Services Set to Ban ME/CFS Sufferers from Donating on a Lifetime Basis

DANCING WITH THE SANDMAN: UK Blood Services Set to Ban ME/CFS Sufferers from Donating on a Lifetime Basis

In a letter to Andrea, the Dept of Health have described ME very clearly and plainly as a 'relapsing condition'.  Since mental disorders cannot cause relapsing, remitting conditions, may we hope the treatment of ME will now be 'brought in line with' the treatment of other relapsing conditions such as MS in areas of our health service other than criteria for blood donation?  And in our Benefits system too?

Monday, 9 August 2010


So *excited bounce* I've done it. Bought a power wheelchair. It's due to arrive tomorrow.

Knowing my depressive self as I do, I've been waiting since choosing it on Friday for a wave of 'ain't it awful' to break over me (after all, I'm still - just! - at the age where I'd hoped to be buying pushchairs not wheelchairs) but it hasn't happened. I'm feeling 100% positive about it and can't wait to get 'out on the road'. Well, on some rather quiet pavements to begin with, perhaps.

What brought this on?

First and foremost, reading this article on part-time wheelchair use by Sue Pearkes.  I really do urge you to read it and pass it on as widely as you can. 

Sue writes:

"My attitude towards wheelchairs is that they are no different from glasses. You wear glasses to see better, and to improve your quality of life. You use a wheelchair to get around more easily, and to improve your quality of life."


"it has enabled me to get out and about and do things without causing me great physical discomfort and pain, or completely exhausting myself for the next few days."

And when I read those words, it all seemed so obvious. Of course I shouldn't have to choose between absence of pain and absence of action. Of course I shouldn't have to accept being virtually housebound just because I can no longer drive or walk for more than about 10 minutes without suffering payback.  Why should I? What had I been thinking for the last five years?

The article was a real inspiration to me, as I know it has been for other people, and I really hope the author knows what a difference she has made by sharing her experience and determination so openly and eloquently.

At the same time I was galvanised by something that was said during a discussion with the Second Life ME group (Corina has written beautifully about the group here ).  I was surprised by how comforting it was to meet  the Second Life chat group. My non-ME friends are wonderfully supportive, but there's something 'extra' about a response that includes the words 'oh, me too!'.  Anyway, we were exchanging tips on things that helped us cope with bad days and I 'admitted' that sometimes I put one of my arms in a sling to reduce pain at the shoulder. Now I find that always sounds quite odd, so I was quick to add a jokey 'but only when no one is looking!'.  Not only did the group not find it odd, they didn't let me get away with the preventative self put-down either.

"Why only when no one is looking? You have to stop apologising for the things that make you feel better!"

Damn right.  I realised that, in fact, I do feel like apologising a lot of the time - for all the things I can't do, for no longer being the person my friends used to know, for simply having such a ridiculous, misunderstood, fuzzy and plain embarrassing illness.

And I shouldn't.  I should smack myself upside the head when that urge kicks in. And I should for sure refuse to make myself iller just because society on the whole likes its chronically ill to be brave, white-faced, tight-lipped 'little fighters'.  Not that I'm not a fighter...I can be, as Alan Breck would put it 'a bonny fighter''s just that I have the right to pick my own fights, and from now on I'm not choosing the ones that are me vs The Invincible Invisible Man.

So with that groundwork laid, I looked for guidance from online ME friends who have already taken the 'wheels' step, and cautiously tried out the idea on some of my non-ME friends. Here's one other thing I should have known better than....I should have known better than to be nervous about that. The ME friends were not only encouraging but offered tons of practical help.  And my non-ME friends said 'what a fabulous idea, when can we go out somewhere with it?'.  Absolutely no one thought this move was a defeat.

I was even pointed at a Facebook Group  Part-time Wheelchair and Mobility Aids Users United!  which I heartily recommend.  People there gave me a plethora of advice and encouragement.

My lovely husband made the trip to choose a chair as much fun as a trip to choose my first car, and is as excited as I am. (Though at some point I will have to disillusion him about his belief that he'll be able to get his hands on a remote control device to move me around from a distance!)

I'm aware that there may be hostility to face from elements who believe wheelchairs are only for those whose legs are paralysed and that if you can walk at all, you're a fraud to use a chair. And I hope if I meet that, I'll be able to meet it with a smile and polite explanation (though knowing me, I kind of doubt it). But really, the possibility of abuse or being mocked isn't a good enough reason to shrink my boundaries to ten-minute walks and the house - or to pay for 'a real day out' with a week's pain.  

So why wasn't I ready to do this years ago? After all, I haven't really driven for three years now, and have had ME for almost six.  I think...I wasn't ready to see anything other than 'recovery' as a 'win'.  That changed this year; I stopped expecting recovery while still hoping for good periods of remission.  I'm ready to be the 'me with ME' without telling myself everyday that 'this isn't really me'. It is me. As a wise friend is wont to say 'suck it up, buttercup'.  So not only is the wheelchair arriving this week, but my car is going.  I'm sick of seeing it sit un-driven under a trap and feeling somehow a failure because I'm not driving it. It can go be loved by someone else, and I have shiny stickers ready for my new wheels.

I can't wait!

A huge thank you and bundle of hugs to everyone who helped me make this step!