Humans of ME/CFS
My Journey with ME/CFS started almost 46 years ago in January 1970. The doctor called my illness a relapse since I had experienced a similar flu-like illness before. But this time, I was 22 years of age and I felt as I were dying. My husband was to be discharged soon from the Air Force, our baby girl was just 15 months old, yet I felt like was 100-years-old. My recovery was slow. My exhaustion was extreme and the brain fog was something I never felt before. There followed 22 long years of seeing doctors. And, the confusion! What was wrong? I even had a second baby in 1971. Not a great pregnancy. After our son was born, I developed the horrible feeling like I was going to die. How could I be so sick all this time, yet no one yet no one could tell me why?
Gradually I learned to live with whatever I had. I have worked at a few part time jobs, always coming home and feeling worse. I would ache all over and couldn’t sleep. There were many nights I would cry after everyone else was asleep. I told my husband that there was something wrong with my brain and that I was going to die young. I wanted him to make sure I had an autopsy, especially of my brain. In 1992, my first grandson was born. I was so happy to be a grandma at 44.
While sitting with my daughter and her baby one night, we saw a report on our local news about ‘Chronic Fatigue Syndrome.’ I sent away for a pamphlet. I was so relieved when it arrived because I now knew I wasn’t crazy and had an illness with a name. The next day I called my family doctor who told me there was no such illness. He said that I had conditioned myself to be this sick. But this time, I knew I was right and the doctor was wrong. I didn’t go to see a doctor again for two years but finally got a diagnosis from an Infectious Disease specialist. Back then, doctors were prescribing anti-depressants for MD/CFS but these drugs made me worse. So, I stopped taking them.
I found a few support groups. They became my lifeline. I am still friends today with a woman who led one of the groups. My life has been altered, to say the least. I was a dancer, loved to ice skate, but could no longer do those things. Instead, I concentrated on my sewing. I was an excellent seamstress and made my own and my children’s clothes. Once I took a quilting class and loved it. I have been quilting for over 35 years now. Baking is also something I love to do. Sometimes I wonder what my life would have been like if I never got sick. Luckily, I have had wonderful husband for 48 years. We both have our medical problems. Could 46 years of a chronic illness be the culprit? There is always hope. My fatigue and brain fog are with me daily. Yet, I have had a wonderful life.