What Painsomnia is Really Like
If you don’t know what painsomnia is, it’s a mix between the words insomnia and pain. It’s basically where you’re in so much pain that you can’t sleep. You can’t focus on anything else but the pain, and you lie in bed for hours just hoping to fall asleep.
I’m recently going through a bad flare-up, so I’m here to explain what a full night of painsomnia is like!
Going to bed
I’ve been trying to go to bed earlier than usual lately. I don’t work currently, so I don’t really have a set bedtime. My old bedtime used to be between 12 am and 2 am every night. I’ve since changed it to be between 10 pm and 12 am every night.
So I’m in bed around 10 pm. My SI joint is on fire, and when my head hits the pillow, I can feel the entire day on my body. It’s as if my entire body is screaming at me.
The bottoms of my feet hurt, my knees, my SI joints, and my lower back hurt. I feel like a ball of pain, needles, and fire.
Trying to fall asleep
Trying to fall asleep is a whole other story when flaring. I’m at war with my body. I can’t sleep on my sides because it hurts too much, so I’m limited to either my stomach or my back. I’m a dedicated side sleeper.
It takes me hours to fall asleep. I’m tossing and turning for what feels like forever when, finally, my body has exhausted itself enough to let me get a few hours of sleep. I’d guess this is around 1 am.
Waking up…multiple times
I wake up and pain is the first thing I feel. It’s the first thing I think about, too. I look at my phone and its 3 am. I get up to pee and I’m up back to the battle of falling asleep. I’m not sure how long it takes this time.
I’m back awake at 7 am. I grab my cane and head downstairs for milk and cookies. It’s not the healthiest, but I deserve it, right? When I come back upstairs, I’m up for another 2 painful hours until I fall back asleep and finally start my day around 11:30 am.
Starting my day
I don’t get out of bed right away. Heat is always my best friend during a flare, so I turn on my heating pad and I use it for about 20 minutes while I scroll through my phone. My eyes hurt. I’m exhausted, but I know it will just be another fight to sleep any more, so I decide to start my day. I grab my cane and head downstairs for some pancakes, and spend the rest of my whole day puffy-faced and in excruciating pain.
Ready to go again tonight!
Does ankylosing spondylitis cause painsomnia?
Now that you know what painsomnia is, have you ever experienced it? What do you do to try and ease that pain at night so you can get a full night’s rest?
Do you use the word disability to describe your AS?