Humans of ME/CFS
May 1997, a flu that didn’t really want to be become a flu. During my time in bed and on the couch I decided I wanted to go to college after all so I, after what seemed like an eternity (2.5 weeks..) went back to my temp-job and told them the good news. The not-flu kept lingering on so even my last few weeks on the job were spent at home, needless to say they couldn’t have been too sad to see me go.
In September, school started and I managed fine the first month or so, then “it” came back and as from November on I was practically housebound, perhaps once a month crashing on a friend’s couch after a measly trip to the mall. Sore throat, feverish, “fatigued” (worst description of every cell in your body yelling NO to movement), aching bones and an indistinct pain in the middle of my head (and my dad) drove me to the doctor’s office.
Blood was drawn, results came back negative, I was getting annoying (and annoyed). After a while he allowed me to go to the internal specialist at the hospital. A virus, Coxsackie B, was to blame and within a year I should be up and running, sailing, shopping, learning.
The year passed silently. Fully counting on the specialist’s estimate, I enrolled for a second (and next year’s third and fourth time) in college but even trýing to go was out of the question. I spent my days on the couch, behind the computer chatting to friends or staring at the wall or TV. Bed was for night-time only since it made my symptoms worse.
It became a family project; my mom would choose an (alternative) doctor or buy a book describing cures and we’d decide on where to go next. My dad would transport me to wherever the antibiotics, reiki or energetic healer was located. Most didn’t work or made me worse, some helped. One was SO out of the box that we giggled to each other “If you want to deceive people then come up with something less….quacky!” and it was in the next town and relatively cheap so off we headed. Those drops made my mild fever and sore throat disappear for the first time in years, but other than that things stayed pretty much the same.
A real doctor with a degree and everything gave me antibiotics for a Mycoplasma, which I barely made through to the end, I got so sick. Since all else had failed I went back to the hocus-pocus lady and asked for the drops again, this time just Epstein Barr, and all brain-hell broke loose. For weeks I couldn’t walk a straight line from dizziness and needed a bathroom within drunk-walking distance in case of returning meals. My brain, eyes, even teeth started trembling and slowly parts of me seem to be working again.
Will I indeed be well soon??