Humans of ME/CFS
In 1995, I began to experience a deep aching in my forearms. I tried to ignore it as I went through my day, which, at that time, was as a stay-at-home mom who was homeschooling her two sons.
The thrumming pain kept me awake nights for about three weeks. Shaky and sleep-deprived, I saw a rheumatologist who diagnosed me with Fibromyalgia. During that visit, I would have the first of yearly Nuclear Antibody tests, which test for autoimmune activity in the body. This test always comes back with a positive reading.
Just when I thought I'd gotten the Fibromyalgia under control, in 2001 I lapsed into a bone-deep fatigue, accompanied by flu-like symptoms, which turned out to be Mononucleosis. This kicked off my Chronic Fatigue Syndrome. I was 41. I was in bed for three months.
My life has never been the same since. I've gone from doctor to doctor, only to be treated symptomatically for everything from Acid Reflux Disease, migraines, insomnia, deep muscle and joint pain, depression and so on. At 50, I determined that I would go back to college to finish my undergraduate degree in English. I did so, taking one or two classes at a time. Somehow, I pushed myself through the fatigue and was filled with pride when I walked across the stage in 2012 to receive my diploma. Only a handful of people knew what I'd gone through to earn it.
Since then, I've longed to work outside the home, but unfortunately have been unable to as my CFS continues to dominate every aspect of my life. Even so, I am blessed with a deeply kind, resourceful and loving husband, and for all his help, support and encouragement, I am truly grateful. My faith helps me immensely, and the love of my family is also a precious gift. However, unless a miracle occurs, I fear that living with the debilitating fatigue and other painful symptoms of CFS will be the thing I live with until I leave this earth.
I'm not sure that any major scientific breakthroughs will be made in my lifetime, and it's sad to see so little federal funding go towards research. Until then, I'm thankful for organizations such as the SOLVE ME/CFS Initiative that keeps me and other fellow CFS patients abreast of the latest research and advice.