A day off means something else when you have a chronic illness

For most of my life, “a day off” meant a weekday that I didn’t go to work or school, wasn’t in bed sick, and could do whatever I wanted.

About a dozen years ago I took “a day off” for the first time that didn’t involve any travel. I didn’t go to work, I got extra sleep, I took the car in for some work that needed to be done, I cleaned the apartment, and I indulged in some hobbies. By the end of the day, I felt fantastic – rested, relaxed, and productive. I remember it so well.

These days “a day off” is a completely different animal. For one thing, I’m not in school or working at a job, so that’s not relevant. Instead, I spend a lot of my time dealing with health issues. I can never get away from my health problems; those are and will always be with me. I can almost get away from some of the logistical issues, though. And I can ignore the “to do” list that needs doing.

I woke up feeling horrible. I’m more exhausted than I have been in a while. So many muscles ache that don’t usually ache. I woke up not wanting to do anything. Luckily for me, I didn’t have anything scheduled today, medical, social or otherwise. So I decided to take “a day off.” There’s so much I should be doing, but I’m not. I should be making phone calls to find a therapist. I should be dealing with a form from my lawyer. I should be doing laundry. I should be changing the sheets on my bed. I should be taking a walk on this rare sunny afternoon. I should have put food in the crockpot this morning. I should be getting a long-overdue haircut. Doing even two of these things would make me feel very productive, but instead I’m not doing any of them. No, instead I’m taking “a day off.”

Here’s what I have been and will be doing:

  • Took a shower at 4pm. I put it off as long as I could, but in the end I felt sort of gross and decided it was worth it.
  • Emailed with some friends (but ignored all of my other emails.)
  • Fill my pill boxes for the week. I do this every Wednesday. I don’t want to do it, and I’ve been putting it off, but it really has to be done today.
  • Watched tv. Will watch more tv.
  • Read my book. Will read more.
  • Knitted. Will knit more.
  • Writing this blog post.
  • Ate leftovers. Will eat more leftovers
  • Will wash dishes. Because there’s no one else to do it.

I haven’t decided yet about my physical therapy exercises. I should do them, but I’m just so tired, and they take so much effort, and it’s my day off, so I don’t want to even think about it. But I know I need to.

So at the end of today, I won’t feel rested, relaxed, and productive like I did that day 12 years ago. But maybe I won’t feel any worse than I did when I woke up this morning. If that happens, I’ll consider it a successful day.

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