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 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."
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.
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).
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.
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!
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.
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.
Twelve years have passed since that diagnosis.
I am still learning how to pace, to read my body's signals to avoid most crashes and use mobility aids.
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.
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.