Humans of ME/CFS
I used to be a typical Type-A personality: high energy, day in, and day out. This led me to a very successful career in software that took me traveling all over the country.
Unfortunately, in 1998, my body burned out. Depression and anxiety, they said. My fight or flight system became overactive. Major anxiety attacks accompanied by periods of extreme fatigue and more needed sleep. I had to leave my career and apply for disability benefits. After years of being told my blood work was normal and being prescribed antidepressant upon antidepressant, I finally went to a clinic specializing in ME/CFS and Fibromyalgia. They sold me a bagful of supplements and talked me into receiving IV treatment. It worked for a little while, but traveling there was a 4 hour drive each way. By the time I got home, the medication wore off and I was even more exhausted. That was in 2005.
Move ahead to 2010 and I realized that now that weather conditions in the Northeast during the winter and spring were playing havoc with my brain function. My concentration and memory were worsening and worsening the fibromyalgia and fatigue. I decided to go to a warmer, sunnier climate for those seasons. Being in southwest Florida was great, but awfully expensive. I had to keep working part time, as Social Security allowed, to be able to afford this change of location.
Upon returning from the southeast in spring of 2011, I discovered I had endometrial, or uterine, cancer. Oh no, I thought, another health issue! Why me? Fibroid gone bad, they said. Only happens in 0.5% of fibroid cases. Just my luck. Blood clots and migraine headaches caused the surgery date to be moved up. Six rounds of chemotherapy and five weeks of radiation followed. Toughest thing I’d ever have to endure, but I was determined to beat it.
Now, 3 1/2 years after going into remission, I am left with even more extreme fatigue, worsening fibromyalgia, and chronic colitis (from the radiation). The doctors never gave me any post treatment tips or resources to use. I finally learned, on my own, that there are Cancer Survivorship Rehabilitation programs, but insurance doesn’t cover the cost. So I’m back in Southwest Florida for this winter and spring seasons, at least feeling better than I would up North due to the heat and the bright sunshine.
Yet, no one understands this fatigue issue. I’ve been bullied by the general public and even healthcare workers because I don’t “look sick.” Spend a day in my shoes, people. Would YOU like to be totally exhausted all the time?