Humans of ME/CFS
I once was a Clinical Psychologist. I biked daily, riding 26 miles on weekends. In my mid-thirties, I took six months off to meander down the east coast from Boston to Florida with my then love on my 22 foot sailboat. On September 23, 1990, two weeks after an operation to trim a torn meniscus in my knee, followed by the first two weeks of physical therapy (PT), I woke up to a strange world. It was the day that changed my life. I keeled to the side when I tried to stand up. The room looked surreal, like walking on the bottom of a deep swimming pool. My thinking was confused and light or sound made me shake violently, my eyes jerking from side to side--me, a lover of things outdoors. I couldn't easily form sentences or remember the names of things.
Holding to the walls, I made it to the bathroom where I threw up as I would do daily for the next year. Thus, began my search for what was wrong. I had inner ear testing, blood work, an MRI. The doctors told me it was all in my head, that my tests showed me to be perfectly healthy. I was finally diagnosed by an infectious disease specialist, but he had no ideas for treatment. My throat became inflamed, beginning a siege of six years of being unable to talk and ten more years of very limited talking. Local ENT's, after hearing my diagnosis were convinced I was crazy. The U of Miami finally helped me.
For nine years I couldn't look at a computer, watch tv, read, or have company. I pretended I was a POW to survive. I wandered through the house then lay down again day after day, my eyes jerking back and forth if someone talked to me. Finally in 1999, I was referred to an immunologist who treated this illness. He helped me understand the immune system problems and the brain inflammation. Most of all he gave me a med that slowed the CNS and stopped the intense reactions to light and sound. I still was very ill, but could find ways to entertain myself and have a semblance of a life. Later, supplements given at the Klimas Clinic partially restored my NK cells, preventing me from going nonstop from one virus to another, and I learned about Bruce Campbell's online pacing courses which helped me. I'm still mostly housebound and can't drive but I'm better.
The insensitivity of the earlier doctors, the total abandonment by people I had thought were friends, the “just think positive and you'll heal” people made a bad situation worse. I made a new life by writing poetry and, even though slow, I've had seven books/chapbooks published and my poems have appeared in many journals. That gives me an outlet for my creativity and much satisfaction. It still hurts that priority isn't given to this disease, though. I'm fortunate to have a home and a husband who helps me.