Friday, August 5, 2016

The 8th of August, Severe M.E. Day - for Understanding & Remembrance

© "Desperate"  Linda Crowhurst 

‘The Roll Call of the Dead’ 
See stonebird

The 8th of August 2016 will be the fourth annual Severe M.E. Day- for Understanding & Remembrance

This year The 25% ME Group are placing the spotlight on Remembrance

"However, sad to say, the life experiences of many of those who are no longer with us were marred by a terrible lack of understanding. So Remembrance highlights the need for Understanding – they go very much hand in hand."

We are immensely grateful to Jane Collingridge, mother of Emily Collingridge, and Criona Wilson, mother of Sophia Mirza, for sharing their reflections. Also to Kay Gilderdale, mother of Lynn, whose plea for appropriate care in the light of her daughter’s terrible experiences is posted prominently on our webpage for Severe M.E. Day 2016. This in the hope that this will help others. 

(This information was kindly forwarded to me by Helen Brownlie 25% Group Advocacy Worker. )

Although I have lived with this illness for 18 years, and have had many years of being mostly housebound, and at times bed boundthankfully I have never been this ill. I have been fortunate to was never totally bed bound or needed to be fed. I managed to stay some bit afloat, among many hospital stays along the way.  I slowly regained more independence over the years. I managed to write about my experiences and regained ability to be creative. 
I am grateful. 
Very grateful.

But there are many who remain so ill with this illness, that they truly portray the essence of living with a hidden illness.

Most us us who live with this illness, will know what I am talking about- Hidden illness. We are only out when we are well enough, so people assume that we are always this 'well'. And therefor the notion that 'it is all in out head' is confirmed by the skeptics.

Those people do not see the affects about our short adventures outside the door: the effects of being in a crowd; the effects of the heat of the sun; the smells in the air; the effects of noise. Most of these things can leave us drained for days, or weeks.

In my case, people see how I do my art and even publish books and have exhibitions. It is even been suggested that I am Very Fortunate to have so much time to create and to be out in my garden... 

Lost Voices 

All these creative adventures are produced twenty minutes at the time - at most about one hour on a whole day - On a Very Good Day. It took me a month to recover from the opening event of my last exhibition. But I am grateful to have this ability- especially when I know of others with this illness who never leave their beds or houses.

I hope that I can be some bit of a voice for them through my art and books.

Talking about Books- here is one with stories about those hidden from society because of M.E.. 'Lost Voices from a Hidden Illness’. I have a copy of it on my shelf. Please Buy one, and support this hidden community.

© Linda Crowhurst Nightmare Together

Through the 25% group and their effort to bring the experiences into the light, I came across the art of Linda Crowhurst . Who states about her work

“I have chosen to use stick pictures to represent my body, because that is how ME makes me feel : thin and brittle, reduced and diminished to the bare minimum. They represent the starkness of my situation and how this paralysing illness has taken away so much of me."  

If you would like to read more about the people who live with Severe M.E. You can find featured articles for Severe M.E. Day 2016 The 25% ME Group newsletter  kindly hosts a review my Into the Light book too.

Thank you for your time to read this and for keeping these severly ill people in your minds on the 8th August, and every day.

With gratitude,


No comments: