Humans of ME/CFS

In 2001, I was happy. At the age of 53, I was a newlywed and finally had the life I’d always wanted, which included my grown son and almost-grown daughter. I loved my job as a nurse manager and was completing a master’s degree. Suddenly, over Memorial Day weekend, I became so sick with what felt like the flu that I was forced to take a medical leave of absence. The fatigue was so intense that I was unable to hold the phone, climb stairs, or lift shoes off the floor of my closet.

That November, I was diagnosed with ME/CFS. Pain medication, sleeping pills, and amphetamines enabled me to return to work. However, by 2003 the brain fog was so bad I could not think clearly and had to leave my job. This also meant losing my salary. Social Security Disability provided small, but important funds. All I could do was sleep and try to watch TV. My son moved back home to help out. My husband and children did everything including shopping, cooking, laundry, and family finances. I could not remember to pay bills. I could not even sweep the floor.
Each morning I took high doses of prescription pain medication, yet still suffered extreme pain and fatigue. At night, I took sleeping pills, but had trouble sleeping. Other symptoms included nausea, vertigo, and electric-like shocks down my arms, legs, and back. I had excruciating pain in my thighs and gums, as well as many bladder infections. I could not tolerate music. I could not tolerate light or heat. I could not comprehend plots and dialogue of books, movies, or television. All I could eat was cottage cheese and apples or strawberries, yet I gained twenty pounds.

Weeks, months, and years passed. Doctors said, “you are depressed.” I said, “Who wouldn’t be?” Yet, there was joy. My husband holding my hand. My daughter graduating from college. In 2007, I began to find various doctors and protocols that slowly helped. In 2013, my rheumatologist said, “you are going to die in your sleep from all those medications.” So, I detoxed myself off OxyContin, sleeping pills, and amphetamines. It took two months, but afterwards I felt significantly better. I thought I was cured.

My wonderful husband died in 2015. The symptoms have returned, brought on by grief and stress. I had been fooling myself. I was never cured. However, this time I know what is going on. I know that if I do not listen to my body, I will pay a heavy price. I must rest when I need to. I absolutely must control stress, which is my worst trigger.

In spite of all this, I am content. I am grateful.

In spite of all this, I choose to be happy.