Wednesday, 12 May 2010

ME/CFS Awareness Day

I'm not the most skilled blog writer in the world, I'm one of those that blogs by saying I did X,Y and Z today, there you go!

But today I want to make a difference, even if I just make ONE more person aware of this disorder then I will be grateful.

This invisible disorder has slowly turned me invisible.  I've never had a massive circle of friends but I had a good social circle at work which has withered down to 2 or 3 that still keep in touch with me.
I can't pop down the street anymore to do errands to bump into local friends, I'm stuck indoors unless assisted. I haven't even seen one of my next door neighbours for over a month.
When I'm sitting on the sofa I can see out of my living room window and I live on a main road in my small town. I see people walk by, cars go by - the world is moving but I'm not. I'm in my own world, and let me tell you, it's pretty bloody boring when I'm alone in it. It's depressing, it's frustrating, it's miserable.

I'm trying desperately not to let this take over my life but there are days I can't even lift myself off the sofa, M.E has control of ME.

There are 2 people in this world that have made the most enormous difference to my life. Nathan, my long suffering boyfriend of almost a year and June, my long suffering best mate of almost 9 years. They are two of the most inspiring, encouraging and kind hearted people I have ever met. They make sure I'm ok, they get me out of the house, they hold my arms when I have to tackle the odd set of stairs, they make me laugh, they keep me going when I feel like I'm losing the fight they understand completely when I have to cancel plans because I'm just too ill, I feel their love everyday and I love them back just as much. I may have this awful, demeaning, debilitating disorder, but with them both in my life I am one of the luckiest people on the planet.

I know you see pictures of me in the local pubs, I know some of you probably think 'well she can't be THAT ill can she?' actually, yes I can. What you don't see is the preparation and end result of what an often taken for granted thing like going to the pub is for me.
I have to completely rest for the whole week beforehand
I have to get Nathan to wash me, iron my clothes and put the clothes on me. It's humiliating, believe me.
I have to make sure I have all my medication with me and everything else I need but can't put too much because my bag will be too heavy for me to cope with.
I worry to the point of sheer fear sometimes that there won't be a seat for me when I get there.
I spend the morning and afternoon convincing myself, talking to myself and psyching myself up just to get there.
I have to dose myself up on all my painkillers to try and numb the pain so I can atleast sit comfortably for a while.
I have to wear clothes a size too big so I can handle them easier when I go to the toilet.Which makes me feel, and look fat. After successfully losing 6 stone it means a lot to me, 2 stones have managed to creep back on and in the condition I'm in, I can't do a thing about it because exercise is impossible.

All that before I've even got there.

I don't want sympathy, I want understanding and awareness. I want this RIDICULOUS rumour that ME/CFS is all in the mind to stop. I want healthcare ministers to acknowledge this disorder and HELP us, not turn us away like they have with me and THOUSANDS of others.

Share this blog, print it, show it to your friends, link it on Facebook, Twitter, anywhere. Get the word out. PLEASE show support by sharing, that's all it takes, no money involved. You won't die, it's not a chain letter, just forward this post to as many people as you want.
We're here, there are over 200,000 of us in  JUST the UK suffering and we want to be heard and understood. Please, if you can do one thing for me,  make us heard by sharing what you've read today.