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.


  1. That is a good description of what it is like to try to go out, i am in much the same situation. I will share this on facebook, though my healthy friends are very silent, i will bombard them anyway ;)

  2. <3 Sassy

    Tweeting this and (for the first time in my life) asking people to retweet it.


  3. Consider it spread around with a shovel!

  4. Brilliant post and really tells it like it is. I made a post about invisibility too...but a different kind.

    I'll 'follow' you now I've found you ;O)

  5. Ah Sarah, just ready blog for today and it made me cry. Bless, you, I don't feel I do that much to help you but try to help whenever I can. I value you so much as a friend and am sure anyone who is a true friend would do the same. Chin up mate, I'll always be here for you, to try to keep you smiling, getting you out and still having as much fun as you are able to. Love you. June xx

  6. Sassy you are brave and strong keep up the fight...can't pretend I know how it feels but I will bombard my friends with this!

  7. It was enlightening to read this, it made me understand you and cfs in a way I haven't before.

    You know that those days you can't get out in the real world your virtual friends in KK will be there keeping you company.


  8. Thank you for being vulnerable and sharing. I so could relate to your post. I have had CFIDS/FMS for 20+ years. I am not as bad as your are but I can have bad days that look like yours.

    I, too, want understanding, respect and answers. I will send this far and wide!

  9. What an amazing post this is. I feel for you, honestly. Keep up the good fight my dear...

  10. Love the name of your blog! Great post, too. Can totally relate to not wanting sympathy, just understanding. Thanks for honestly sharing what you go through.

  11. You've made ME aware :0)

  12. I've just found you via VeeVee's blog - love the title btw!

    You describe very well what it's like to have M.E. I agree entirely with your anger at the health ministers etc. pushing that this is all in our heads. I wouldn't wish this on my worst enemy, but I do wish they could suffer from it for just one month to see what it's like - and then imagine what it's like when it goes on for years and years...

    My faith in God sustains me, and my wonderful hubby, my home help (hope I cntinue to get DLA to pay for her lol!) and many other blessings. I look back on my old life and it's like another person.

    I shall follow you now I've found you. Have a look at my blog!

  13. I was suffer with CFIDS disease 17 years, and was time when I was completely paralysed,
    I tested many treatments, but now I feel good, I use real treatment on web