By Jody Smith in Phoenix Rising.
August 8th, is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis, an important day in the ME community. It’s a day that is intended to bring attention to those whose voices are the most quiet, whose presence is so easily overlooked.
Their footprint leaves next to no mark.
It’s a day that doesn’t get a lot of attention from outside our ranks. But we are determined to change that.
I have lived with symptoms of ME for the last quarter of a century. Symptoms have swelled and waned … but at my worst I was never among the 25% who suffer from the most severe forms of this disease.
So don’t look at me and think that I am an example of what ME can do to someone. The very fact that you can read my thoughts, and see my words, tells you this is not the case.
Don’t rationalize that it can’t be so bad because, look here’s Jody or someone else who is able to make a living, can think and function and maintain some relationships. We are the lucky ones.
But 25% of us are not seen, not heard, living in the shadows with voices quiet as a whisper or completely non-existent.
As their brothers and sisters the healthier of us in the ME community must raise awareness for them.
According to Naomi Whittingham in her Aug. 8, 2014 article, about 250,000 people in the UK have ME, with 25% of them experiencing such severe forms that they are housebound or bedridden.
Naomi has been ill with ME for over a quarter of a century. She has spent time living in her bed, and then in a wheelchair, needing full time care which her mother provided.
Naomi had to learn to feed herself over again. She had to struggle to be able to sit up and to talk.
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