The brain fog overwhelms my ability to comprehend the multiple suggestions of what to try. Each suggestion may work for some but not for all, leaving me alone to fathom what to try next. So far, there is no cure, no way out of the loneliness, the boredom, the loss of appetite, mobility, and a fundamental reason to be.Sylvia
Severe ME Story
If I tell you how my life today compares to my life 5 years ago before ME will anybody read my story, take notice and more importantly do something to help the millions of us who like me exist inside a cocoon that cripples us, robs us of family, relationships, outings, enjoyment and excitement.
I miss life, I feel fortunate to have memories of the life I have lived, but in my mind I have not finished making memories yet. I want to spend meaningful time with my grandsons, experiencing adventures together, quietly teaching them the values I learned from my family.
I was a healthy, active person, putting off retirement, enjoying the mental challenges of work, walking the beach in summer and the fields in winter to exercise my herding dog. Then a pre-covid virus morphed into ME and I couldn't concentrate on financials and payroll, I couldn't sit because my neck hurt so much. Without a diagnosis, I pushed through and became weaker, physically and mentally.
Without guidance from a medical professional, I couldn't explain to my employer or family what I didn't understand myself. Five years in and still no medical support. I look for answers through the internet. The brain fog overwhelms my ability to comprehend the multiple suggestions of what to try. Each suggestion may work for some but not for all, leaving me alone to fathom what to try next. So far, there is no cure, no way out of the loneliness, the boredom, the loss of appetite, mobility, and a fundamental reason to be.
In this cool dark room, shielded from the world I think of those who have endured the ultimate tests in life, war, famine, homelessness, natural disasters, and like them I cling to one thing, hope. Hope for a cure, if not for me, for all of my brothers and sisters who suffer with ME, hope that one day the medical profession will make us a priority, and offer understanding, diagnosis, treatment of our multiple symptoms and ultimately the cure.
We want our lives back.
N.B. The featured image is taken from our library of Real ME Campaign photo (i.e Real People with ME/CFS)
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