Humans of ME/CFS

I hate this illness. It is completely unpredictable. Everything I do is overdoing it. I had to withdraw from all my normal life activities. There is no going to concerts, dinners out, or having people over for supper. Gone is the entertaining, dancing, and going out. I could not volunteer or work. That’s right-no work. It is hard not to feel worthless. My work was my life.

Now, I have to figure out how many energy points every activity will take. I do one appointment a week. My life consists of occasional summer gardening and scheduling doctor and physical therapy appointments. I see no change in the future. Winters make it way worse; almost every morning I wake up thinking I could sleep all day and melt into the bed. I never feel rested-ever. It sucks. I have, however, learned to pray. That is a good thing. I have learned who I am; that is a good thing. But, I miss relationships, I miss music, I miss togetherness with my friends and shopping. And sadly, even ten million dollars won’t fix it. Nothing “fixes” it.

It is a whole different way to live, and the worst part of it is you don’t look sick. You look normal! Well, that is unless you see me on a really bad day when I am crawling to the bathroom or eating applesauce in bed for 2 weeks because I cannot move. It is a real eye opener. I have learned to be grateful for what I have, for the little energy I do have.