Tuesday, January 24, 2023

Unorthodox Schedules

 When you're chronically ill, sticking to a strict schedule is impossible. 

I go to bed every night not knowing how I'll feel in the morning. Will I be in pain? Exhausted? Or will I feel okay? This determines the schedule for my day.

On the good days, I do work, take a walk, maybe run to the store, and do some chores. In the evenings, I'll watch a movie or television show, then work on my novel, read, and go to bed.

On bad days, I usually watch television all day to keep my mind occupied and focused on anything but the pain and fatigue. Reading a novel is hard. Writing is harder. But I still try to at least look at my novel every day, even if I'm only doing a bit of light editing.

They, i.e. usually meaning people who don't know any better, say people with chronic illnesses should stick to a schedule. Well, that simply doesn't work for me. This morning, I woke up in severe pain. I only wanted to escape from that pain. Thus, I took a four-hour nap, sleeping away the afternoon. I woke up at 5 p.m. That means my sleep schedule is screwed up. Some people who think they know better would have told me not to take the nap because adhering to that sleep schedule is important! Well. Screw that. Writhing in pain all day is not my idea of a good time, sleep schedule or not.

I'm just a grumpy gus today.

Pain does that to a person. I feel like I lost an entire day. Yet here I am, writing this blog post. That's something, right? I managed to take a shower and wash my hair. Another victory! 

I decided this year that I'm no longer going to feel guilty for staying in bed all day and doing "nothing" if I'm having a flare. I've learned from past experience that pushing myself will only result in more days in bed, not less. ME/CFS is such a strange disease. Exercise can actually set us back in our health journey and make us worse. 

But oh am I ever glad I decided not to take any classes this semester. There's no way I would have been able to keep up. 

In fact, I'm focusing my spare mental energy on my novel. That is how I want it right now.

Well this blog post is all over the place. That's okay. That's how I feel today.


  1. People forget how much energy it takes to be in pain. It's exhausting. I hope you feel better soon.

    1. Sometimes I forget how much energy it takes!


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