A thought-provoking insight into a lifetime spent with the debilitating disease Myalgic Encephalomyelitis (M.E.).
I began to write my experiences with M.E. – also known as Chronic Fatigue Syndrome (C.F.S) – as a way of dealing with all that the illness has thrown at me, as well as those close to me, since I was 6 years old.
As I continued to write, more and more people kept asking about the disease – they knew someone with it, or had heard of it but didn’t know much about it – wasn’t it just feeling a bit tired?
It dawned on me that maybe my jottings could actually prove useful – providing a true and honest insight into the disease which, even today, is thought by some to not even exist.
You have just completed a marathon, endured five consecutive nights without sleep, have a migraine, and the flu. You struggle to think, to move, even to swallow. Nausea rises up your throat, your head throbs, your stomach churns, and every muscle screams in agony. There are no pills to ease the pain; there is no cure. You can see how greatly it affects those you love, but there is nothing you can do.
It is; although the above merely skims the surface of a world experienced by thousands of people.
I am one of them.
I have lived under the shadow of the disease Myalgic Encephalomyelitis (M.E.) since I was seven years old, enduring months of nothing but the above – and more.
Despite the pain and the non-believing, the condition has allowed me to experience much kindness, joy, and made me truly appreciate the simple things that are so often taken for granted. This is my journey over twenty years.
Welcome to ME.
All through my illness I have tried to keep positive. It’s hard, and I fail many times.
Some days my frustration surfaces as silence, others my anger comes across in the form of a bad mood or a torrent of frustrated tears; but every once in a while it goes far deeper. In those bleak days where the sun doesn’t shine and the sky is dark and starless, my head teams with downbeat and despondent thoughts. My entire body is tense with the discontent that is welled up inside of me. Sometimes I can’t imagine ever getting better; that feeling this much pain is all that is left for me, and I want to end this unceasing battle. During these periods I can’t imagine getting anything from life – no success stories, no feelings of achievement.
I look to my future, to try and find something there to live for, but instead I become conscious of just how restricted I am on a day to day basis. My mind focuses on all I am unable to do, and just how much I am missing out on. I am aware of life passing me by whilst I spend my waking hours with my whole body screaming out from the agony it is in: feeling as though I am about to throw up, an ache in my stomach and head, and a pain that envelops my body. The knowledge that there’s a good chance I will be in this state for the rest of my life nestles in the back of my mind.
It scares me.
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