Humans of ME/CFS
I was the high school class president, on the honor roll, played three instruments, and volunteered. I had the whole world ahead of me, until 1993 when my world came to a screeching halt, struck by a fatigue nightmare. It felt as if cement slabs were stacked on top of me and no amount of sleep could change it. I was terrified along with my family. Bedridden for years, I cried and went to doctors who told me I was just depressed (since all my tests came out normal), so I cried some more. In college, it seemed that every step forward (literally and figuratively) was ten steps back. Sometimes I took only one class at a time; it took nine years to become a nurse. Oh, the cruel irony of a type A creative perfectionist having a chronic disabling disease! Every day is a battle with my mind, body, and spirit. The grief cycle is never really over; it cycles too. I often gaze out the window, wishing I was on the other side of the glass as neighbors jog by or help their kids ride a bike. The seasons change but my life does not seem to. I feel like I am in the “Groundhog Day” movie: I wake up, give myself a pep talk to move (my joints feel like the tin-man), take pills and debate whether to take a shower, then hurry because as each hour ticks by my fatigue worsens. I eat, get anxious because I had so many plans for the day and now need to lay down because my blood pressure has dropped, watch T.V., change positions due to neck pain, browse Pinterest, wish my daughter was home to make lunch, take more pills, then go back to the couch again. I ignore phone calls because of brain fog, get fearful of noticing yet another symptom, bribe myself with chocolate to do some laundry, and depressed because I got nothing done. The 5:00 news signals my husband will be home soon. I tell him I had another one of those days as he makes dinner and watch Netflix together. I take more pills and dread getting ready for bed because it involves climbing stairs. I dream of what I will do if I have energy tomorrow. Repeat. My social activities are going to a doctor's appointment (and stumping the specialist again) or talking to the kind pharmacy employees. Should I wear makeup and earrings when I leave the house so that the doctor will respect me, or go as is to match how I look with how I feel so they'll believe me? I do have a bit of pride left. Then my neighbors see me with makeup and say, “You look great, you must be feeling better!” Ugh! CFS has stolen so much from me: forced to quit work and become a parent from the couch/bed instead of in the audience or sidelines. I feel more like a burden than a wife sometimes. However, CFS did not steal an amazing support group of loving family, friends, and God and it did not steal my spirit! I am chronically ill and I am chronically strong!