What’s a typical day with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)?
I wake up after sleeping six hours. Two cups of coffee. I keep the tv off all day because I like it quiet. I do my daily Bible study/reading which takes about two hours. If I have no medical appointment I try to stay home and rest. I can’t handle stress anymore.
I eat breakfast and take my morning pills. I go upstairs and dress or bathe (every other day) and rest, then dress. I can’t shower or sauna anymore because they are far too draining to me. I look around at my house that needs to be cleaned and organized and then go downstairs, knowing it’s another day that it won’t get touched.
Last night I dared to vacuum upstairs, something I push myself to do only every three weeks or so. I can’t even clean my own house. My husband does the downstairs floors every week. But because of that exertion, as well as my bath today, I could only do my Bible reading and load the dishwasher, have lunch and more pills, then I rested the rest of the afternoon till my husband came home. I had throbbing pain in my legs the whole time. Then I got up and made a simple dinner, had more pills, and went back to the couch. If it’s a day I have to shop for groceries, I can’t also make dinner, so I’ll buy a roast chicken. My husband doesn’t complain.
This really is a normal day for me. I always hope that the next day I’ll be able to be more productive, but I’m usually disappointed. I’ll watch some tv in the evening, take more pills around nine, drift off around ten, then wake up around eleven with a second wind. I stay up till midnight or one every night, because I can’t sleep longer than six hours because my back hurts. The few times I’ve tried to go to bed around eleven I wake up at four in the morning and it throws my whole day off.
Early on when I was still trying to figure out what was happening to my health, I had a doctor’s appointment four out of five days a week. It was so hard to drag myself to these and try to appear normal for a few hours. Then it would make me crash for 24 hours afterward, but of course, the doctors don’t see that. They see someone who looks healthy. That’s the thing with invisible disabilities and chronic illnesses. They’re invisible. Invisible, but not imaginary.
Jealous of this schedule? Don’t be. I’d rather be a productive member of society with energy to do life. This illness has taken so much from me. But in spite of it, although I do get discouraged, I’m not depressed. I know I have it better than most with this illness worldwide. So many places they are not believed, or worse, are put into psychiatric facilities. I can’t believe it. Also I have disability benefits through work and the government and a private plan, so at least I don’t have financial stress on top of health concerns. My husband reminds me that my job right now is looking after my health. He really is an amazing man. I’m so thankful for him.