Humans of ME/CFS
How do you cope? I get this question a lot. My answer is usually, “What is the alternative?” Actually, I know the alternative, but I won’t go there. Coping is a skill and like any skill, you get better with practice. I have had lots of practice. I was diagnosed with Crohn’s when I was 19. Diabetes in my late 30s. Migraines since childhood. And then ME/CFS at 49.
When I am asked this question, I talk about the plate spinners on the Ed Sullivan show. If you are too young to remember, these guys would keep a dozen plates spinning on the ends of sticks. This is what passed for entertainment in the sixties. But this is my life. All the aspects of my life are like plates spinning on sticks and I have to do just enough to keep them all in the air. It is stressful. It is scary. It is exhausting. It is also impossible. Plates fall from time to time and I have to let that part of my life go, because I can’t keep that plate in the air.
It has become about tradeoffs. It is being honest with myself about what I can do and what I can’t. This weekend I was supposed to go watch some friends in a musical at one of the community theaters. I couldn’t go because I needed the weekend in bed. I am disappointed, but if I had gone, I would have had to change my plans for the week.
So what do I do? I have my laptop, so I write. I talk to friends on Facebook. I am active in certain political causes, so I write about them. I have a couple of blogs that I write for on occasion. I am also a musician. I have a keyboard that I can play in bed and record on my laptop. I have a SoundCloud page for my music.
I also get out when I can. Once a week I work with an improv troupe. I take voice lessons. I go to movies and the theater from time-to-time. I have even had a couple of small roles in local theater productions. I live in a small town, so everywhere I need to be is no more than 10 or 15 miles away.
No, it is not easy to balance everything. Things fall by the wayside. Like laundry and cleaning. They are on a strictly as-needed basis. Sometimes passed needed. The clothes in the dryer have been there for several days. The dishwasher needs emptying. I will get to them when I have the energy.
It is about priorities. Doing the things that need to be done, but also doing enough to keep my spirit alive. On occasion, a plate will fall. If it is important, I will pick it up, when I can. If not, I let it go. I have let go of a lot of things, but I am coping.