Well here we are again.
It’s May 12th – International M.E./CFS & FM Awareness Day
The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases).
Mr. Hennessy was based in the US but understood that it needed to be an International event. He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
May 12 was chosen as it coincided with the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50 years of her life. Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing.
A few years ago I wrote a poem for 12th May and it seemed appropriate to call it M.E. Groundhog Day (after the film of that name where the same day is repeated over and over again).
It can feel as if we are stuck in the same way. In order for things to change we have to reexamine our lives and our priorities. In order for things to change we need to keep raising awareness and understanding.
Once again I’m reflecting on whether anything has changed since last year.
Sadly there are still too many in the medical profession who know nothing or very little about M.E.
Sadly too many are struggling on their own with this illness and receive little or no help and support.
The most severely affected are left in a living hell.
Sadly there are many who are still disbelieved and abandoned by family or by friends.
Sadly too many have to fight for benefits and to prove that they are genuinely and seriously ill.
Sadly still not enough money is invested into research of M.E.
Sadly more time, money and effort seems to be wasted on the appropriate name which only causes more confusion and conflict.
However there are some glimmers of hope with new studies taking place and some studies that have recently published results providing further evidence that M.E. is a real physical illness.
At least we now have inter-active social sites on the internet which help provide information, help, support, and a stage to raise awareness and understanding as well as to promote campaigns.
Personally I have been trying to raise awareness and understanding by writing poetry. 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 M.E.
You can find more about me and my poems in my blog here
I have pledged that in May all the sales of my book will go to Invest in Me
Additionally, in 2015 I’m well on my way onto completing book number two of poems about M.E.
There is still so much I want and need to write about.
So what are you going to do this year?
Perhaps you could share my poems and my blogs to help others to understand.