When Sleeping Becomes A Nightmare With AS
I've never liked going to bed. As a child, my mother would check on me every night — and every single night, I'd hear her coming and launch myself from whatever fort of toys I'd made on the floor straight into bed where I'd pretend I was asleep. I always had this deep, clawing need to stay awake — to be part of the night, to stave away sleep. Sleep felt like a pause on existence. It felt like a certain kind of death. And it was boring! It was a time of quietness and being in my thoughts, which, even as a child, were racing — thoughts of monsters and scary things.
It never really changed. I still hate pressing pause on life, dealing with late-night racing thoughts.
But now I really can't sleep
For the past year or so, I've had pretty chronic insomnia. All the tossing and turning turned into bedtime dread. The bedroom became a place of, "Ugh, will I ever fall asleep?" So I started adopting bad nighttime rituals, like going to bed super late or Googling-anything-to-keep-my-brain-active-and-avoidant-of-sleep behaviors. It's like I didn't even want to try to sleep; I just wanted to keep going-going-going to avoid laying there and not sleeping.
I also quit using certain herbal supplements — THC and melatonin — that I once turned to for nighttime sleeplessness. They just weren't making me feel good, anymore, and I don't regret quitting them. But this isn't making my insomnia any better.
It's hard to get cozy
But let's be honest — the biggest issue is the AS: I have a hard time getting comfortable. Don't we all? My hips feel like they're on fire. My back hurts. Even my elbows hurt! And when it hurts a lot, I want lots of room to stretch, toss, and turn — especially because my partner is there, sleeping beside me, taking up all the space.
If the flare-up is bad enough, I'll go sleep on the couch, on the floor on a yoga mat, or an extra bed we've got. That's because it feels like my spot in the bed is too small — and I already feel cramped inside my own damn body! It's a whole ordeal. I feel like I'm wearing a suit of armor during sleep, which isn't exactly the comfiest PJs.
So lately, I've adopted strict and specific bedtime habits:
- Gentle stretching before bed
- No phones or mindless scrolling at bedtime
- Meditation or music listening in bed
- Cozy salt lamps or candles
- Icy-hot as needed while drinking a cup of Sleeptime tea
- Journaling for a few moments
- Simply allowing myself to feel gratitude for my environment, coziness, and safety.
I'm trying to rewire my brain, to teach it that sleep is nourishing and peaceful — not the enemy. I'm trying to get into a space where I am being kind to my mind and body — not keeping myself awake out of fear of pain or anxious thoughts. Sometimes we have to dive headfirst into what bugs us in order to fix it.
How do you support healthy sleep? And what's your nighttime ritual, especially when you're in pain?
Do you use the word disability to describe your AS?