The Fight in Me
To understand what living with Myalgic Encephalopathy (ME) entails, imagine this scenario: you sleep badly, wake exhausted; your mind trying to shake off the confusion of disturbing dreams. With disbelief at how it is possible to feel so hung over without having consumed alcohol the previous night, you proceed to embark upon the day with the best of your ability.
Pooling all energy reserves, you dress at midday and force yourself to venture to the corner shop, feeling dreadful and pushing yourself to the limit. Where upon you meet that random person who inevitably says “Hello, you’re looking well!”
The very nature of ME - an essentially invisible illness - means empathy and sympathy are scarce, understanding poor, and acknowledgement and support from health professionals a long time coming.
Eleven years ago when I was diagnosed with ME there was no local treatment or support and I was offered no way forward. All attempts to receive funding for in-patient management at the closest ME specialist hospital - 100 miles away - were refused on the grounds of insufficient evidence to suggest improvement.
Much of this has thankfully changed in the last decade, with earlier diagnosis, greater understanding and support from numerous specialist units which the government opened across the country (although on-going funding for such centres are drying up).
My journey of recovering from the debilitating effect of ME has been a somewhat personal one. I came to the realization, after about 6 months of bed-bound dizziness and incapacitating fatigue, that if I wanted to regain my former health, I had to somehow work out how to, myself. 31st July 1998 - I remember the day so clearly, when I decided I would not be beaten by this unknown neurological phenomena that had dug its claws into every area of my life.
I imprinted a motto on the screen of my mind which became a mantra to my stubbornness and determination: It’s not the size of the dog in the fight, it’s the size of the fight in the dog! The next day I found the strength and courage to make it downstairs, via a piggy-back from my Dad, for five minutes before weakness resumed. It was a small triumph but one from which I have never looked back…