Humans of ME/CFS
I am 63 years old, a 34-year survivor of ME/CFS. I am homebound, only leaving home for medical appointments. I belong to the 25% of people with ME/CFS in the severely affected range. Prior to becoming ill, I had a busy fulfilling life as a single mother. I worked two jobs: a 20-year career in the mental health field and a part-time job. I volunteered in various capacities in my community. I enjoyed water aerobics and played softball and basketball at the local recreation center. I also swam, played recreational tennis and rode horses.
In 1981, I couldn’t seem to recover from a particularly severe bout of flu. I was exhausted, had to quit my part-time job, stop volunteer activities and curtail my life to bare necessities. I spent most of my time away from work in bed. Symptoms that lasted for nearly six months before beginning to ease somewhat included joint/muscle pain, dizziness, sleep problems, mental fog, passing out, low-grade fever, sore throat and swollen lymph nodes.
These symptoms have waxed and waned since, never completely disappearing. Especially hard to deal with are the: constant muscle/joint pain, post-exertional malaise and cognitive difficulties (word finding), short-term memory loss, extreme exhaustion after mental effort, neuropathy, severe pain/numbness in my feet and hands, loss of sensation, photosensitivity, very poor balance. I use a cane or walker. I have orthostatic intolerance, only able to stand upright for two to three minutes at a time.
The term fatigue is inadequate to describe the weighted inability to move or function that I feel every moment of my life.
Twelve years after onset, I was diagnosed with CFS at Bowman-Gray Hospital in Winston-Salem, N.C. My primary care physician’s initial diagnosis was depression. Specialist consultations included two psychiatric evaluations (who said that I had a physical not mental disorder), endocrinologist, rheumatologist, ENT, neurologist, urologist and others.
My life since having CFS has been cycles of relapse and remission. With each cycle, relapse has extended in length and worsened in symptomology. I tried cognitive behavior therapy (CBT) and graded exercise therapy (GET) treatment that accelerated the progression of ME/CFS and caused loss of functioning that I never regained.
By 2006, I was housebound and almost completely bedridden. No travel, shopping, running errands or family visits. I wasn’t able to consistently keep medical appointments. Over time, I have improved enough to take care of my personal needs and attend doctor appointments. I require assistance with grocery shopping and house cleaning. I need oxygen 24/7 (never smoked) and use a walker or cane for mobility.
I left my career in 1995 and was approved for SSDI in 1999. My poor health caused me to sell my home of 33 years. I was once told by a woman that watching me worsen was like watching me fade into a ghost before her eyes, a technicolor picture fading to blurred black and white.