Humans of ME/CFS

I was diagnosed with ME/CFS in September 2004. Six years prior to that, I had pneumonia and was in the hospital for a few days. I stayed home for three months with intense and overwhelming fatigue. Eventually, I got better and went back to work. But two years later, I went through the same exact scenario. I got a bad URI and took antibiotics. This time, the fatigue came and did not leave. I tried working for a year and my Director of Nursing was so amazing and willing to work with me as much as she could. Eventually, I was down to 4 hours/week and even that was too much. My personal physician said it was time to stop. That was one of the most difficult days for me in my life. I loved nursing and having to give it up was heartbreaking. I kept up my license because I thought I would get better. The changes were life-altering. My husband took over most chores. It changed his life as well, obviously. All my kids were grown by now and out of the house but very supportive. This is such an isolating disease. I am alone most of the time. I pace myself throughout the day. Mornings are better for me so that is when I try to get out to grocery shop or run an errand or two. I can load and unload the dishwasher or washer and dryer. I can cook easy meals and make the bed. Besides that my husband does everything else. If a trip is planned, it needs much advance planning and rest ahead of time. Naps are incorporated into each day. Upon return, it takes weeks to catch up to where I was before the trip. If I become ill, I am really down and out; it takes much longer to recover due to this disease. I try so hard not to get ill. During flu season, I try not to go out at all. My husband does the shopping and errand running. It has been 11 years and I know fairly well what I can and can’t do but there are those days that I try to push and do more and I pay the price. When I get extremely overwhelmed with fatigue what comes out of me is panic attacks. I cry and cannot catch my breath; laying down does not help. I need to take a lorazepam. I then end up laying down and trying to sleep. My husband knows me better than I know myself. He will sense when I am about to have a panic attack by just looking at me and immediately takes action. I get ‘brain fog’. My words will not come out right. John is my lifesaver along with my incredible doctor who understands this disease completely. I count on her and know she will help when I need it, especially with my migraines. This disease has totally changed our lives and I pray for a cure someday soon!