Humans of ME/CFS

It all started three years ago. I had had a flu shot, then a week later a respiratory illness. The cough lessened, but I was getting weaker. My legs felt like they were made of cement, then my whole body felt heavy, then numb, as if I had gotten a shot of novocaine from my shoulders down. The fatigue was extreme. Even when I was awake, I was in a sleep state. I laid down to sleep and when I awoke, I couldn’t move my body from the shoulders down. I couldn’t sit up or roll over in bed. I couldn’t hold a toothbrush. My head hurt like it had never felt before.

As I started to get a little feeling back, it was feelings of pain. Nausea was extreme, worse than any morning sickness I had experienced in eight pregnancies. I could not perform any of my activities of daily living. I was totally dependent on my husband and children to take complete care of me–dressing, bathing, feeding me. I hate having to ask for help! My husband has to walk behind me with his hands around my waist to hold me up and use his own legs to move mine. The doctor did nothing for me but to refer me to a neurologist. No help there, no diagnosis either. Mind you, even though I had told the doctor that I was too weak to do any ADLs and was leaning on my husband in a chair to stay sitting up, there was no neurological exam or any other exam.

I have now seen seven doctors with no diagnosis and the last one referred me to a clinic that I have been trying to get into for over a year, with no success. This disease has taken away my life. I was a very active mother who had just finished nursing school, volunteered at church and schools, worked part time, and was very active with my children. Now, I can’t even take care of simple household chores. I am too weak to stand to even do dishes for my large family. I have too much exhaustion and imbalance to take the laundry to the basement laundry room.

My career goals of being a nurse have been stolen from me. I don’t have the cognitive function to perform that career safely at this point. Any activity, physical, cognitive or emotional causes weakness and post-exertional malaise. I always pay when I do anything, I just hope the cost won’t be a relapse to make me bedbound again. This severity of the disease waxes and wanes but I am mostly couch bound. I can’t leave my home alone because if I do, I may not be able to get myself back. I am not depressed, but I am not happy about being ill. May God help us find a cure!