Saturday, 12 May 2012

ME Awareness week 2012

It's that time of year again, when I spam your facebook or twitter news feed with stuff about ME and you either just roll your eyes and ignore it, or read what I've put and I really hope you read what I put. ME is a serious and debilitating condition that affects 250,000 people in the UK alone. It changes lives and family dynamics, it leaves people unable to work, housebound, bedbound sometimes even paralysed.

My friend Kate described it in this way
"Imagine a really bad hangover, then having to run a marathon, then coming down with the flu, all at the same time. On top of that, imagine someone is prodding needles into you constantly, spinning you around on a chair so you are extremely dizzy and nauseous and shining a bright torch in your eye so that light hurts. Then also, imagine everyone has a speaker phone, so even a whisper seems like shouting. Imagine spraining every muscle in your body and having to carry someone equivalent to your own weight who is clinging on to your legs all the time. Imagine having muscle spasms almost constantly uncontrollably which feels like torture as its so painful and tiring. Imagine someone speaking a foreign unknown language to you, and you have to concentrate REALLY hard to try work out what they're saying, then you forget it. Imagine having to sit in an ice bath for a long time, freezing cold, all the time. If you think you can't get any more tired, imagine having panic attacks on top of that, & really bad anxiety which literally drains any energy you've got left. Then, imagine staying like this, not knowing if/when you're going to get better, having to deal with this HUGE change of lifestyle. Imagine how tough and heartbreaking this illness can be. Imagine a lot of your support mechanisms breaking down, some friends move on. Imagine having to deal with this on a day to day basis, not knowing how you are even going to be hour by hour. And worse of all, imagine being told 'ME isn't real' and 'it's all in your head'. Even by medical processionals. This is what I want to change. I can't control my ME, the causes, the cure, but what everyone together CAN change is its understanding."

I think this is an amazing way of describing how ME feels, although no one suffers in quite the same way. For me anxiety isn't really a problem but I think the rest pretty much explains how it feels for me, especially on bad days and I'm no where near as bad as Kate.

I'm fortunate, I am well enough to at least try and go back to uni but 3 short days on placement means I spend the rest of the week in bed or on the sofa dosed up on strong painkillers, usually with spasming limbs, extreme pain, weak muscles and a myriad of other symptoms. When I am on placement I have to be constantly finding ways of sitting down when talking to patients, taking 5minute rests when its quiet and doing my best to not overdo it which is pretty much impossible.

But I didn't want this post to be all negative, this time last year I was housebound. I celebrated my 20th birthday in the back garden with a few friends and relapsed so badly afterwards that I was hospitalised. This year I'm going to the zoo! That may not sound like much to most people, especially when you combine it with being in a wheelchair but it's something I couldn't have even considered doing last year and I'm grateful that I'm well enough. I'm grateful that I don't have to wear sunglasses every waking hour; that I can cope without needing to wear ear plug to watch TV or have a conversation; that I can sit up for longer than 30minutes without my back going into spasm. All things that I couldn't do this time last year! 

This year a DVD called Voices of the Shadows was released to make people aware of what it is like for people living with, and dying from, severe ME. You can buy a copy of the DVD here. This is the trailer for it:

Please make yourself aware of ME. Understand that it's not something to be taken lightly and it's certainly not all in our heads because every ME sufferer I know, myself included, would do anything not to feel this way.

Below are a list of blogs written by various friends of mine. Please check them out :) 

1 comment:

  1. lovely well written post dear. Thanks for linking my waffle not necessary i just wanted to write something. Much love x