\u201cI have chronic fatigue syndrome.\u201d Those are the five most horrifying words I\u2019ve ever said.<\/p>\n
Tragically, those five words define me. I\u2019m the shadowy figure suffering alone in the quiet house down the street. I\u2019m a ghost groaning in the night.<\/p>\n
I prefer to imagine that folks remember me for who I was. Nobody understands what\u2019s become of me. Though I have been sick for over a decade, I wasn\u2019t diagnosed until 2011. Before I ever said those five words, I had lost myself to a bewildering and debilitating illness – CFS.<\/p>\n
Nobody refers to me as \u201ccomputer programmer,\u201d \u201csystems analyst,\u201d \u201cresident guru,\u201d \u201cgenius,\u201d or \u201ckeeper of the magic\u201d anymore. Nobody seeks my advice or help. Nobody shakes my hand at recognition ceremonies. Nobody respects the fellow who worked his way up from temporary file clerk. Nobody admires the hard-working family man who returned to school to finish his associate degree, earning an A or A+ in every course. Nobody stops by my desk to ask what\u2019s wrong. Nobody whispers about how bad I look. Nobody complains to management that their \u201csuperstar\u201d has taken over 200 hours of paid sick time per year, for five years running.<\/p>\n
Why would they? That me no longer exists.<\/p>\n
After years of recovering and relapsing in turns, \u201cThe Crash of August 2010\u201d completely wiped me out. I could no longer drag myself to work by sheer will. Spending three to five days in bed no longer lent me the strength to carry on. Intractable dizziness, agony, imbalance, brain fog, crushing fatigue and their ruthless accomplices became my full-time occupation. Drag myself to work? Some days I have to crawl to the bathroom and scoot down the stairs to reach the refrigerator. Then it\u2019s no surprise that my condition also brought major depression and generalized anxiety.<\/p>\n
Only my immediate family witnesses the worst of the suffering. If I see anyone else, it means I\u2019m having a good day, good hour, or good minute. It\u2019s no wonder that I don\u2019t look sick to those who once called me \u201cfriend\u201d or \u201ccoworker.\u201d They can only catch a glimpse of me during my best moments. None of them has ever visited my bedside.<\/p>\n
Why should they? Their old friend no longer exists.<\/p>\n
But what does CFS feel like?<\/p>\n
It feels like I always have the flu, only much worse. It feels like the world is always moving, and I can\u2019t find my bearings. It feels like I\u2019m going to fall down.<\/p>\n
It feels like the pain will never end. It feels like I\u2019ve let down everyone who needed me. It feels like I\u2019m a terrible burden on my family. It feels like my own personal hell.<\/p>\n
It feels like I can\u2019t think. It feels like I\u2019ve lost my mind. It feels like I\u2019ve lost the life I worked so hard to build. It feels like I\u2019m dying. It feels like I\u2019m never coming back. It feels like I\u2019m a ghost.<\/p>\n","protected":false},"excerpt":{"rendered":"
Humans of ME\/CFS \u201cI have chronic fatigue syndrome.\u201d Those are the five most horrifying words I\u2019ve ever said. Tragically, those five words define me. I\u2019m the shadowy figure suffering alone in the quiet house down the street. I\u2019m a ghost groaning in the night. I prefer to imagine that folks remember me for who I […]<\/p>\n","protected":false},"author":1,"featured_media":308,"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\/rob.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/315"}],"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=315"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/315\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/308"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=315"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=315"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=315"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}