Tuesday, 12 May 2015

Soft in the middle - ME Awareness Day 2015

A man walks down the street , he asks "why am I soft in the middle now? Why am i soft in the middle? The rest of my life is so hard".
(Paul Simon- You can call me Al).

I've often been told how brave I am or how well I'm dealing with this. But the truth is that inside, like most people,  I'm as soft as.. well... a very soft thing. If anything, I'm softer than I ever was. Yes, being ill teaches you to be tough, to roll with the punches and all those other cliches.  But us sickies are all softer inside than we care to let on. 

Having this illness drains you of everything you have. They don't come much more positive than me but this is pretty damn hard.

I have been disbelieved by medics and forced by psychologists and physiotherapists to do things which have worsened my condition. Made to feel responsible for my decline in health. I have lost my job. My promising career. Social life. Friends. Options. I have been robbed of the life that I wanted, planned for and deserved.

I had some recent stress in my life which has made me a bit worse than usual. Whether it's a full blown relapse or just a glitch I don't know yet, but with this illness every setback comes with the questions... "Is this going to last? Will I improve again? Will I get worse? When will I be back to where I was?" and these questions will never be answered because frankly, nobody knows.

As treatment after treatment doesn't work (and some even exacerbate your symptoms) the options run out. It becomes a case of 'management' over treatment. Well I don't want to be 'managed'... to spend all my time at the hospital and GP surgery having my symptoms kept under control. I want to be out there living my life like I used to. I want to make a difference.

I have to watch as the illness is given no funding, no interest, no priority. As friends are hospitalised or die of the illness, and others end their lives through desperation and despair. I have to use my limited energy to get a message out there, to campaign for my illness to be recognised as the bastard that it is. 

We don't want sympathy, we just want recognition, research and answers that lead to treatments- treatments that help and do not harm. Surely that's not too much to ask for the 250,000+ sufferers (in the UK alone).


I am terrified and desperate and need help. There's nothing very tough or brave about that. But I have a feeling that even the toughest badass out there would struggle with this one. 


  1. Perfectly put, lets hope we all have some good days just around the corner :)
    Clare x