My last two years of high school\u20141968-1970\u2014I was unwell all the time and in and out of the hospital for tests. At one point, I was diagnosed with esophagitis, later with a severe kidney infection.<\/p>\n
During the second year, after a month of headache and fever every day, I consulted a doctor again. He was so sure that I had a terminal disease of the connective tissue that he ran the test five times. Every time the test was negative. I was sent home with a diagnosis of a viral infection\u2014virus unknown\u2014and a prescription for an antidepressant.<\/p>\n
So my illness, that years later I came to know as ME\/CFS, I’ll say began when I was a teenager. But I had had life-long digestive problems and possibly orthostatic intolerance before that.<\/p>\n
My experience with ME\/CFS began, however, much earlier than my teens, because mother was ill. Although she was never diagnosed, I have absolutely no doubt that she suffered from ME\/CFS. I don’t remember my mother as ever well. She spent much of her time asleep on the couch. At school, I worried about whether Mother was taking care of the baby.<\/p>\n
The last few years of my mother\u2019s life were a nightmare. She had aggressive breast cancer (lymphoma, actually) and then was diagnosed with a rare incurable blood disorder, myelodysplasia. And a “fatty” liver” diagnosed years earlier had become cirrhotic.<\/p>\n
To return to my own story, my health did improve after high school, and I thought of myself as generally healthy, but in retrospect I realize that I dismissed symptoms and cut back on activities. My circle of friends was smaller than it had been in high school. I didn’t participate in extra-curricular activities. I didn’t respond to the invitation to enroll in Honors College.<\/p>\n
The year after graduation from college, from 1974-75, I worked in a factory, and although the job was light packing, it was too hard for me\u2014all that standing. I felt more and more run down. Finally I got sick with a terrible sore throat, aching joints, etc.<\/p>\n
Symptoms waxed and waned during the next couple of years. Some days, weeks even, I actually felt ok.<\/p>\n
My health declined again when I tried to go to graduate school and after that when I was working as a technical writer.<\/p>\n
Then the summer of 1988 I was very ill. Later I would think that I must’ve had hepatitis. I don’t know. One day as I lay in bed, I thought I saw Death sitting at my computer.<\/p>\n
Since that summer I have not been well one day.<\/p>\n
In 1990 I got a diagnosis of CFS. My health has continued to decline as the years have gone by. Since a major crash in the fall of 2009 I’ve had to spend most of my time in bed. I am now 63 and close to the age my mother was when she died. I hope my life is almost over.<\/p>\n","protected":false},"excerpt":{"rendered":"
Humans of ME\/CFS My last two years of high school\u20141968-1970\u2014I was unwell all the time and in and out of the hospital for tests. At one point, I was diagnosed with esophagitis, later with a severe kidney infection. During the second year, after a month of headache and fever every day, I consulted a doctor […]<\/p>\n","protected":false},"author":1,"featured_media":220,"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\/merry.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/239"}],"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=239"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/239\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/220"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=239"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=239"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=239"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}