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What My Nights With Multiple Sclerosis Are Like by the Hour

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So what are my nights with multiple sclerosis (MS) like? It’s basically the same as the day but only darker, literally and figuratively. But the darkness amplifies it all and turns up my pain and discomfort up by at least 50 percent.

Sleep disturbances make a good night’s rest a fond memory. The frequent trips to the bathroom increase after dark. There’s random limb movements and general “painsomnia,” the inability to sleep because of pain.

“Painsomnia” rules many of my nights. I’m sensitive to noise, and over-the-counter sleeping pills often don’t work. Neither do the ones that need a prescription. But I take them anyway and hope to get some sleep. Painkillers are the same way. They don’t always work. There are times the demon that is “painsomnia” wins.

Here’s a typical nighttime battle between me and the “painsomnia” demon:

10 p.m.

My first attempt at going to bed. Lie there. Stare at the blades of my ceiling fan spinning around. Try to ignore the pain. Get up and go to the bathroom.

11 p.m.

Think about taking more meds. Go to the bathroom. Keep on trying to ignore the pain.

12 a.m.

Get up. Bathroom again. Try some kind of distraction, usually crochet at that time of night. Sometime between midnight and 2 a.m. is when sleep usually comes, if it’s going to.

2 a.m.

Groan in pain. Go to the bathroom. Ponder every decision I’ve ever made. Think about how unfair this all is. Try sleeping on the couch, the floor, anywhere else. Get stuck thinking, “Why me?”

3 a.m.

Start thinking about how long I could sleep if I fell asleep now. Think about everything. Lie there in pain.

4 a.m.

Give up on sleep. Check on social media. Think about getting ready for my day.

5 a.m.

Go to the bathroom. Get up. Start getting ready for the day. Think about facing the music that is every day with chronic illness.

6 a.m.

Forget getting ready for the day. If I’m lucky, I can fall asleep for an hour or two.

If I don’t sleep, I spend a lot of time trying to distract myself and waiting for the light to come. In so many ways.

Image via Thinkstock Images.

Originally published: September 12, 2016
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