When a health assistant comes to my home, before they treat my daughter, Elizabeth Ann, I would like them to know that for 28 years, she has been disabled. Prior to that time, she was an active healthy young lady aspiring to save the environment.
Then she came down with something like the flu. She never recovered. We saw over 20 doctors and found that she has chronic fatigue syndrome.
There is now a new name, ME/CFS, but still no treatment or cure.
She is now housebound (mostly bedbound). Her day begins with a cup of tea around midmorning as she moves slowly. I bring her up a tray and she eats small amounts of healthy foods. Her digestive tract is extremely sensitive. She deals with body aches and uses cold packs around her head to try and relieve some of the pain. She deals with cognitive issues at her worst moments. If she tries to enjoy having a friend or family member visit, she will pay dearly. Her symptoms all become worse.
We have exhausted all medical support we can and try to support awareness through advocacy work.
– Elizabeth B. B., mother and at-home caregiver of a pwME