Sleepless in Sickle Cell

The pain crisis I had been experiencing for over a month finally subsided. The past several days I haven't had any Sickle Cell pain. Until today. It's amazing how sleep, or the lack there of,  impacts our illness.

I think I was in my teens or early twenties. I went to go see my Sickle Cell doctor because I was tired all the time. He asked how much sleep I was getting. I told him eight hours every night. He said, "Then get nine or ten."

"Ten hours!" I exclaimed. "Eight hours is a lot of sleep."

"Jon, you have a serious illness. If your body needs nine or ten hours sleep to regenerate, then that's what you need to give it."

He was right. Once I started giving my body the nine to ten hours sleep it needed, the tiredness I experienced went away. Still today, ten or even eleven hours is what I need to function; call me Sleeping Black Beauty. When I neglect to allow myself the necessary sleep, a pain crisis will begin within one or two days.

The problem I've been having lately is this. With both of my hips in the state they are in, I cannot sleep on my sides; I can only sleep on my back. I've always been a side sleeper. Because I can only sleep on my back, my back gets sore from laying in the same position. In addition, my hips begin to ache; so mid-way through the night, I have to put a pillow under my knees to somewhat change position.

There's also another problem. When I had my foot ulcers, one was on the heel of my left foot which I believe caused some nerve damage. When the heel of my foot rests on my bed or anything, it doesn't take long before it causes stabbing pain in that area. So I have to sleep with a pillow under that foot so it doesn't touch the bed. Between that, my hips and my back, I struggle to get uninterupted sleep.

The past two nights have been very sleepless for all the reasons stated above. As a result, my pain crisis returned today and I feel pretty crumy. This is by no means something new. My health and how I feel is tightly tied to the amount of sleep I get. This is true for all people, but when you have Sickle Cell--like a teenage drama queen--things are exaggerated.

To parents. Please be sensitive to this. Your child needs a lot of sleep. Like drinking as much water as possible, sleep is a vital ingredient to keeping your child healthy as possible. It's not a magic fix of course. Pain crises will still occur, sometimes for no reason at all. But ensuring your child gets enough sleep sure goes a long way to keeping them at bay.

To teens. I would encourage you to learn to discipline yourself. Know how much sleep you need and train yourself to get. When you know you need to go to bed, go to bed. I remember what it was like being a teenager. There were many nights when I stayed up far to long than I should have, and I always paid the price for it in the following days. Having fun is important, but so is staying healthy. Sometimes a little fun is worth whatever comes; sometimes it's not. Learn when to make the proper choice.

Sickle Cell is a difficult challenge to live with, but you can still live, love and enjoy life. Please do just that, enjoy life.