My illness struck just as I was finishing high school. I remember waking up the morning of my SAT test and finding that numbers seemed like strange hieroglyphics. I bombed. I was so ashamed! (I later realized that every time I relapsed, numbers would be a problem for me. I still don’t understand why.) For the other symptoms, I found self-deprecating excuses: lazy, clumsy, forgetful, lacking discipline, etc. I told myself–and anyone else who might have noticed something off about me–that I was “just coming down with something.”<\/p>\n
As years went by, I found it more difficult to do everyday things. Sure, there were times of near-normalcy when I was able to fool myself and my friends; but more often, I struggled with being able to make and keep dates or appointments. Old interests–hiking, skiing, cycling, paddling–were given up. I just couldn’t keep up with my friends, and the cost of the exertion in the days and weeks afterward was too steep.<\/p>\n
Housework and hygiene suffered. Relationships were neglected. Eventually, I had to give up working (although I tried to work every time my health improved enough to stand).<\/p>\n
When I married, my husband knew I was ill; although neither of us knew what I was sick with. During the year leading up to our marriage, I was reeling from the effects of a bout of strep throat and flu. He was understanding, and since he didn’t want me to work anyway, I was able to slowly regain ground lost to my last job.<\/p>\n
We began a youth ministry. At one point, a close friend pointed out that it “wasn’t normal” (her words) that I would consistently need three days in bed after every event. She urged me to get medical help. I had been in denial for so long. After all the years of negative self-talk, it shocked me to consider that there might actually be something physically wrong with me!<\/p>\n
The doctor first diagnosed me with mononucleosis. When the mono hadn’t improved after a year, she re-examined my full symptom roster and changed the diagnosis to CFS.<\/p>\n
She referred me to an internal medicine specialist who gave me advice that I dismissed at the time as too simple, but have now come to appreciate for its practicality: proper sleep hygiene; avoid alcohol, caffeine and soda; rest when tired (I scoffed under my breath, “when am I NOT tired? I’ll be resting all the time!”); eat a healthy diet; keep a journal of activity levels….etc.<\/p>\n
Twelve years have passed since that diagnosis.<\/p>\n
I am still learning how to pace, to read my body’s signals to avoid most crashes and use mobility aids.<\/p>\n
I am trying to be kinder to myself. My family and friends have joined my husband in supporting me and encouraging me to rest and not over-exert.<\/p>\n
There are good days when I can socialize, pursue hobbies or work around the house; and there are bad days when I hang on and hope to survive.<\/p>\n","protected":false},"excerpt":{"rendered":"
Humans of ME\/CFS My illness struck just as I was finishing high school. I remember waking up the morning of my SAT test and finding that numbers seemed like strange hieroglyphics. I bombed. I was so ashamed! (I later realized that every time I relapsed, numbers would be a problem for me. I still don’t […]<\/p>\n","protected":false},"author":1,"featured_media":422,"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\/sharon_s.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/430"}],"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=430"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/430\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/422"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=430"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=430"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=430"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}