Humans of ME/CFS
At age 44, I was a highly functional small Kentucky city administrator. Except for allergies, I was very healthy. Now, I'm 63 and was diagnosed in 1998 and I have been disabled by ME/CFS since Fall of 2000. At the time I was diagnosed, I was told if I continued to regress the door was always open for possible disability.
I learned a lot about the "deep brain injury" as he called the problems that ME/CFS patients have with HPA axis. Functionally, that doctor didn't help me that much. He treated me until June 2002. That was my last visit to N.C. Pain is always a factor with ME/CFS my doctor said because the pain threshold is lowered due to HPA axis impairment.
I had to find another physician in Indiana. I had to make the short flight, but I was very weak and had a continuous dry cough for 2-3 years. No phlegm. Nothing but just dry and cough which turned into asthma which I had never had before. After the coughing finally subsided some, it left me with a symptom I described to my doctor as a tingling, burning, stinging sensation with an almost suffocating dryness of my tongue, throat, and bronchial tubes. Finally in January of 2004, I found a doctor who could help and spent a week in a motel and at his clinic doing IV treatments which only he does for ME/CFS in the U.S.
It didn't help, but once we started addressing the energy and hormonal disruptions and immune system at the same time, I slowly became to improve. l6 years later, I'm still disabled. But, for 7 years I was 90% homebound and bedridden. No church for me. I love church, but I was too ill to go.
I'm in my l2th year of treatment and still sleep 3.5 hours a day and 8.5 at night and many meds are not covered by health insurance and my doctor is private pay. I'm doing better, after a terrible wreck and major back injuries put me back a year and 6 months, I’m still very ill. Aquatic therapy supervised and unsupervised has help my pain and I enjoy it . Many times I shy away from friends and family talking about if i really having a bad day because no one can understand unless you have walked in these shoes. Being more functional and involved in church I thank God in heaven.
I went though many doctors. Many family and friends thought nothing or little was wrong with me. It is very hard to endure this when you know something is wrong with your body. I had played basketball in organized men leagues, intramural college league, high school and middle school for years.
I was septic at one time. In the hospital and near death, after a severe automobile wreck in ‘04 and my weight spiraled down to ll5lbs. No eating disorder, just food allergies and too weak to get up and eat enough. Now, I weigh l80 lbs.
I lost my career, time with my then very young daughter and currently 2 grandchildren and a son who is 36. All due to ME/CFS.