Humans of ME/CFS
I was an example of great strength in a small body. I was a personal trainer and body builder in the early 90’s. I was so healthy that I had not been to a doctor for anything other than the usual required PAP test and the like for over 15 years. I was strong beyond belief. Or, so I thought. Or, so my doctors thought. One day, I came down with the flu. It was strange since I had only had about 4 colds in my entire life! I blew it off since I knew it would be gone quickly. It took a couple of weeks and I felt great and went back to the gym. Two months later, I remember sitting on an exercise machine thinking, “Wow, I feel tired and it’s only the second work out of the week.” By next week, my resting heart rate was around 90 (from 57). I would faint if I got up too quickly. I was as weak as a final stage AIDS patient. I thought I was dying. No doctor could tell me I wasn’t. I was in total terror. My business of training was gone, as I now had so little energy I could not make it upstairs to bed in one trip. I had to lie on the landing for an hour to rest. No cleaning, no cooking. I could not even shower by myself. I had a low-grade fever for 3 months but all tests came back “normal.” I had a friend on the PGA tour who sent me to his doctor. He said, “You have CFS.” My response: “What is that, what?” I had never heard of it. I asked when I would recover. I will never forget his aversion of eye contact as he said, “Any day now.” Twenty one years later, I have no life left. My youthful middle age is gone. I am a senior. I spend 18 hours a day in bed. I cannot visit my grandchildren, cook dinner most days, or even clean my home by myself. Twenty one years in this hell with no real help, despite competent doctors’ intentions. I feel isolated. I feel life is not worth living much longer. I had hope for so long. I had a positive attitude. I am going to recover! Gone now is that attitude. I give up. What kind of life is this? My husband, now in his 70s, has to care for me. He cannot quit work because we need the money to pay for medical costs. Am I depressed? Yes. I know am. Wouldn’t you be? How would you live without being able to take your dog for a walk, wash your own clothes, or even make your husband a birthday cake? Would you be depressed? I think 99% can answer “yes.” But that is not my illness. My illness is being an invisible woman with an invisible invader illness. Who will care enough to help me before it is too late? Will you? I won’t hold my breath.