Sleeping Beauty Needed a Pep Talk: Fatigue, Chronic Illness, and Getting Over It

I used to be a finicky sleeper. I needed the right space. The right mattress. The right blankets—hell, I once even cut open a pillow—took out the desired amount of stuffing and sewed it back up so that it was just right. Finicky.

But lately? Not so much.

In fact, since my illness has gotten worse I’ve found myself less and less choosy about where I sleep. For instance, a few months ago I went with R.J to get a haircut at The Man Cave. It’s this really lush men’s salon that gives you a cocktail while you get your haircut. Seeing as R.J only gets his haircut about twice a year, it’s an understandable luxury. Another luxury this salon offers? Really comfortable leather couches–which is exactly where I found myself waking up after a nice, long, and very public nap.

Yep…Right about here.

And now that I’m really not working…Sleep just seems to find me. It started back in June when my heart medication started wiping me out. And it really hasn’t let up since. Sometimes I just sleep all day and all night and I feel like I need a nap to get ready for my nap.

And let’s face it; I don’t think the whole having to file for disability, getting a handicap parking pass, waving goodbye to all my clients, and oh yeah—losing my total independence hasn’t been affecting my mood. Between the hospital stays, the crazy medication, and the complete lack of diagnostic direction—I’m overwhelmed and it’s all just depressing. Happy freaking turtle, right?

I’m glad I took a pause last night right about here while writing this entry. R.J had come upstairs to say goodnight and he saw how desperate I was for a pep talk. I was frustrated. One of my main symptoms is dehydration with the inability to retain water. I had drunk five bottles of water and four bottles of Powerade over the last few hours and I still felt dry as a bone. Why couldn’t I do anything to help myself?

Sometimes I put him on the spot like this. It really isn’t fair to ask someone how and when it’s going to get better when there’s no possible way they could actually know or convince you that they do.

So he did the next best thing: He tried to remind me that this year—we had accomplished more than we ever thought we could. We moved out. We both had (have/had.) careers. We were paying our bills. Even though it was hard sometimes, we’d still found a way to help me get by without energy. Maybe it was a difficult few weeks, but it would get better. And just look at the Bear! How lucky were we to have our Bear!?

I do love the bear, I told him, but I was scared of having to drive the next morning. I hadn’t driven in two weeks because I’d felt so off. The idea of getting back into a moving vehicle when I had blacked out just by standing up yesterday was throwing me. But then—it’s really always like this after a period of being shut-in from a flare. I forget what it’s like to be free to go to Publix anytime I want, or run my own errands. It’s like a momentary agoraphobia—that ALWAYS disappears the second I get into my car and put the keys in the ignition.

Which meant that it was a really good morning for me. I feel like, at least on some level, I got back on the horse today. Sure, to most the idea of running some errands at the DMV and grocery shopping aren’t exactly accomplishments to be hailed, but when I was struggling to get from the bathroom to the bedroom yesterday—it does kind of seem like something worth celebrating.

I’ll be doing a few product reviews in the next couple of days with items I’ve been using lately. (Things like: Compression stockings, non-drug sleeping aids, books, etc.) I know that I have a million symptoms and that learning to cope with new ones when you still haven’t figured out how to cope with the old ones can be a nightmare. But if I can find one small comfort in a body full of pain, than maybe I’ve accomplished something. So I’m going to start really trying to find those small things that can actually make a difference and maybe they can help you too.



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