Thursday, 4 February 2016

My A-Z of ME, by Ros LeMarchand

If there was ever a book that captures every emotion,  every thought that the ME journey has taken me through,  then this is it.  I haven't read any books on ME before for fear of being bogged down by all the negativity of living with chronic illness.  I have to admit that I'd hesitated buying this book for that very reason before I bought it.  But instead of being bogged down by it I felt empowered and validated.


Ros Lemarchand has captured so fluently what it feels like to live with M.E.  She has written in verse,  thoughts and feelings that I have felt but not been able to vocalise and therefore,  not been able to deal with them properly.  Seeing my struggles,  past and present,  has helped me to make sense of them as well as feeling such comfort that I am not the only person who has felt this way.  That despite every test coming back clear,  what I am living with is real because other people are going through it too.
I want those I care about to read this as well,   this valuable insight into what we go through can aid in even greater understanding and empathy. Family members and close friends help in every way they can but without living it themselves it isn't easy.  The poems in this book enable the reader to grasp more fully the realities of life with M.E.


I love the poems and I was so interested to read the story of the wonderful lady who wrote them and am thankful she has shared it.  An inspirational lady, who despite living with ME herself, has put this book together to raise awareness, help others and raise money to help fund much needed research. Here is her story:

"I first started writing poems many years ago. My love of poetry stems from my childhood when I used to attend Speech and Drama lessons. I had to learn and recite poems every week and often would enter into poetry reading competitions. However I didn`t start writing poems until I became ill.
 

 
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.
 
 
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."
Buy the book and help raise funds for research:
A percentage of sales will be going to Invest in ME
http://www.investinme.org/
 
In 2013 Ros worked with the Big Sleep for ME. The illustrated poems featured on this post were from this collaboration.
 
Ros Lemarchand's blog is well worth following for more of her poems and insightful, comforting and inspiring posts:
 
Follow her face book page for updates:
 
Artwork for the book is thanks to ME Awareness Words and Pictures