Humans of ME/CFS
We had a wonderful life. We were raising two active girls with busy schedules every day of the week. When I first got ME/CFS, I did not know why I did not feel well any longer. As my children grew, each year become more difficult to keep up with working, taking care of our home, attending all the girls’ sporting events, cooking, volunteer work, attending church and having energy to enjoy life with my family. I went to the doctor, but received no answers.
After 10 years of living this way, I became even worse. The day I was finally forced to admit to my husband that I needed help with our household was embarrassing for me. I am blessed that he understood that I was pushing with all my might to be a good mother, wife and contributing member of society. We have now had to pay for home help for the past 10 years. The part that hurt the most was when I got so bad that I could no longer leave the house to do things with my children. They were robbed of so many things that they deserved to experience with their mother.
ME/CFS slowly stole our lives. There were no longer family outings or physical outdoor play together. My girls missed my presence every day. I couldn't even take them to the swim club because the heat made me so ill. By 2003, I had to stay in bed every afternoon and most of the evening. This was how I lived every day, and my family missed me as much as I missed them. In 2009, ME/CFS rendered me completely bedridden. My amazing husband had to help bath me, dress me and blow dry my hair so I could collapse in bed when he was done. I also suffered with Fibromyalgia so at first we did not know it was ME/CFS that had done this to our lives.
We feel like we have lost everything. Normal life does not live here. No more eating out as husband and wife. No more entertaining or enjoying friends. The only way my family or anyone could see me is to briefly visit my bedside. I have been so sick that my body cannot be in the presence of others unless it is brief, or I become much sicker. I suffer around the clock and wondering why I am even here. This year I missed the births of my first two grandchildren. I cannot even hold them. Living this way is heartbreaking for everyone in our family. Funerals, birthdays and holidays, for each one my family is there, and I am stuck here in bed ALONE. Eating Christmas dinner alone should not happen. Please help all of us who are living in isolation with no hope for a future or a life.