I was asked what the ME stands for. This is the new name being promoted for CFS. It stands for myalgic encephalopathy and chronic fatigue syndrome. It is endorsed by the leading researchers and clinicians in this malady. Myalgic refers to the muscle aches and general flu-like achiness of this condition. Encephalopathy means a disorder of the brain and central nervous system, a neurological malfunctioning. I have had ME-CFS for 15 years.
In 1991 I began breaking down, but I continued to work, growing ever sicker, with no diagnosis, until I collapsed, unable to stay out of bed, in January 1993. Finally, in 1997, a Social Security disability judge ruled that I was “totally and permanently disabled.” Since then I have been housebound. It was becoming disabled that led to my life in stitches, the main subject of this blog.
You can read the whole story in this article I wrote for The Embroiderers’ Guild of America in response to a call for writing about how stitching had helped you recover. Well, I hadn’t recovered. Instead, NOT recovering had led me to stitching. This essay was published in Needle Arts magazine.
Thanks for the link to your wonderful essay. It’s a powerful testimony to the ugent need we have to create, even under difficult circumstances. Creativity makes life meaningful in a way few other experiences can approximate. I love your line about how not recovering led you to stitching. We never know where life will take us.
there are no words to express how much I relate to this piece and understand at a cellular level where you are coming from .