An Excerpt From `My A-Z of M.E. (Myalgic Encephalomyelitis)` by Ros Lemarchand

An Excerpt From `My A-Z of M.E. (Myalgic Encephalomyelitis)` by Ros Lemarchand

I have written many poems about M.E. and recently published a book on Amazon called `My A-Z of M.E. (Myalgic Encephalomyelitis)` by Ros Lemarchand. This is what I have written at the beginning of the book

I first became ill in 2002 and at the time I didn`t know what was wrong with me. It felt like the worst flu ever but it didn`t go away.I was sent for lots of tests and by a process of elimination I was told in 2003 that I had chronic fatigue syndrome. Although it was a relief to have a name to my illness I knew nothing about it. So I read as much as I could in order to learn more. I soon discovered the original name was myalgic encephalomyelitis and I now prefer to use that name whenever possible. Chronic fatigue syndrome just sounds like I`m a bit tired and it`s so much more than that.

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Since my diagnosis I have struggled with a very difficult and invisible illness. I have faced disbelief and ignorance from family, friends, doctors and many others. I still do to this day. Many people with ME or other chronic and invisible illnesses share the same experiences. I was finally forced to give up work in 2005 as I was only getting worse not better. It was a hard decision to make. So my life had to change. At times it`s made me feel angry, frustrated or even depressed. I have gone through a grieving process. I`ve lost that person I once used to be. I`ve lost the life I once had. I have been forced to change, adapt and learn ways of coping with a chronic illness. As ME is a remitting and relapsing illness I`ve had good periods and some really bad ones. It`s an illness forever changing and new symptoms developing all the time. With little or no support from the medical profession I`ve had to learn about this illness and how best to manage it myself. Over the years I have probably become a self expert. Yet even now this illness can still take me by surprise. Fortunately I have found help and support from others like myself on social networking sites and other internet forums. Without this support I don`t know how I would have survived.

It`s comforting and reassuring to know that I am not facing this alone. I have observed others expressing the same feelings, emotions, experiences and problems as myself. This has given me the inspiration to write poems. Through my poems I have been able to express not only how I feel but others as well. My poems are a window on what it`s like to live with ME, how it affects and changes lives, the suffering with so many symptoms, the lack of understanding, the emotions and experiences that so many have in common. Writing poems has helped me to cope with this illness. If you have been diagnosed with ME, or even another invisible illness, I hope you will be able to identify with my poems. If you don`t have ME I hope that my poems help you to understand this difficult and complex illness. I hope that it will help you to gain some small insight to what it`s like to live with ME.

Through my poems I want to show the reality of a life with ME and to increase understanding and awareness.

* For more you can visit the author’s blog. She has agreed to donate a portion of the proceeds from her book to ME/CFS research.

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