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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
The term fatigue is inadequate to describe the weighted inability to move or function that I feel every moment of my life.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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.<\/p>\n","protected":false},"excerpt":{"rendered":"
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 […]<\/p>\n","protected":false},"author":1,"featured_media":219,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2020\/07\/jan_b.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/233"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=233"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/233\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/219"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=233"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=233"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=233"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}