The Thing About Sleep

February 01, 2016

"When you feel so tired but you can't sleep..."
- Fix You by Coldplay

I mean, did Chris Martin nail insomnia or what?

One of the big things about having fibromyalgia (or CFS, Lupus, or anything in that family) is that insomnia is a major symptom. Sometimes we can't get to sleep for no reason. Other times we do sleep, but we wake up feeling even more exhausted. (Yes. I know. It's not fair. Also, the irony is that I was falling asleep while working on this post a couple of days ago.)

For a while, my sleep schedule has been pretty good. I go to bed around 1 or 2 am and wake up at 11 am. Yes, I know that this isn't a typical sleep schedule for most people, but trust me, this is one of the best sleep schedules I have ever been on.

For about a year in 2012, I was going to bed in the early morning and waking up in the evening. It was about 7 am to 5 pm. Some days I woke up at midnight. The reason for this was unknown, but my sleep schedule just couldn't regulate itself. (This is why waking up at 11 am is a blessing. While it's late in the morning, it's so much better than things used to be.)

Sleep is tricky for those of us with chronic illness or any type of insomnia. Sometimes we can't sleep. Sometimes we wake up too early. Sometimes it's impossible to regulate our sleep cycle. The symptoms manifest differently from person to person, but for everyone, insomnia makes sleep really, really hard.

There are not a lot of reasons for this, either--none that I know of, anyway. I've never nailed down what causes my insomnia. Sometimes it's really bad. Sometimes it's nonexistent. I've had periods of time where I get in bed and can fall asleep instantly (this is what's been happening lately). I've also had sleep be elusive and practically nonexistent. I've stayed awake for 24 hours straight (NOT RECOMMENDED). And this past weekend, I accidentally missed my meds and ended up laying awake for 5 hours and only sleeping 3 before waking up with a splitting headache. (If my friends are reading this and I didn't talk to you this weekend, this is why. This is also why I didn't post on Friday; I've been feeling horrible.)

To sum it all up, insomnia is just kind of a sucky and annoying thing to deal with.

Leave my door open just a crack
'Cause I feel like such an insomniac
Why do I tire of counting sheep?
When I'm far too tired to fall asleep

- Fireflies by Owl City

If your friend has insomnia and/or chronic illness, please remember...

  • Sleep is hard for us. If we aren't available at regular hours, it's probably because we're sleeping.
  • While it's nice to stay up late and sleep in sometimes, it's not nice to have to deal with the irregular sleep cycles and the never-ending battle to get some sleep. If I had the choice, I'd wake up earlier than I do.
  • Try to support your friend the best you can, understand when they need to go to sleep (no matter what time it is), and be there for them if they need you.
  • Insomnia isn't really something we can control. And trust me, I wish we could!
If you're dealing with insomnia and/or chronic illness, please remember...
  • I feel you. It's awful.
  • Sleep when you can. I know it's really hard to put things down and take the time to rest, but it's important for your health that you do. (Trust me, I'm still learning this.)
  • Treat yourself to a fuzzy blanket. Even if it doesn't help, at least you have something warm and soft to hold onto.
  • Don't be afraid of sleeping with stuffed animals, either.
  • Try white noise. I have a white noise app on my phone, and it's calming to be able to listen to a fake fire crackling or simulated rain.
  • You're not alone in this, and I'm always around to talk. (Well, except when I'm sleeping.)

Do you have insomnia? What are your experiences with it like? Have you found any helpful things that help you sleep?

(Disclaimer: This post is based on my own experiences and doesn't reflect the experience of every person with chronic illness or insomnia. Please feel free to leave your experiences with insomnia in the comments below!)

P.S. - To help build community amongst fellow spoonies, Young and Sick now has a Facebook group!

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  1. it, hate it. now that I'm doing better health-wise, it's great and super easy to fall asleep, but when I was in the middle of my really bad flare days, I hated sleep because it took so long to drift off..and when I woke up, I didn't feel rested at all.

    sleeping in the middle of the day gets so many bad reactions. before I got diagnosed my parents just thought I was lazy. I had multiple people say they wished they could stay home and do nothing like I did all day (to which I responded: "yeah, watching Netflix for hour after hour and then staring at the ceiling when you can't sleep but hurt too much to move doesn't get boring AT ALL...") It sucks that people view getting what our bodies NEED as something bad. but I guess that's just life. *shrugs*

    love this post! <3