What Sleeping Is Like When You Have a Chronic Health Condition

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For people battling chronic disease, sleep is a complicated thing. On one hand, we often don’t get much of it on an average basis. Or, at least, not quality sleep. On the other hand, there are folks with conditions like depression, or those on medications that cause drowsiness, who sleep a lot. Our relationship with sleep is one where we regularly swap between not getting enough and getting what many people call “too much.”

I can’t count the number of times people tell me I’m lazy because I sleep 10 hours a night. Or the number of times people claim I’m lucky that I “get to sleep so much.” I understand that being able to sleep 10 hours a night might seem like a wild fantasy to many folks who only get to “sleep in” maybe a day or two a week, but for us, it’s necessary.

Using my own experiences as an example, I typically have to be in bed for around nine or 10 hours to wake up functional. If I take my medication to get to sleep, I might be in bed for 12. Now, I use the term “in bed” because a lot of that time, I’m awake. Unless I’ve nuked myself into REM, I toss and turn for at least an hour while I try to find a comfortable position. I then fall into a restless sleep for a few hours, rinse, and repeat. And that’s on a good day.

On a bad day (like last night), I am in too much pain to sleep even with my medication. I went to bed around 1 a.m. and tossed and turned and finally relented and got out of bed at 6 a.m. I went back to bed around 8 a.m and got some semblance of sleep until 1 p.m. when my cats decided it was time to wake up. That’s 12 hours. Half a day “wasted” in a futile pursuit of my own magical unicorn. These bad days happen more often than I like to admit.

Other times, I can’t stay awake. I get eight hours of sleep, wake up, can’t function or think because I’m either medicated or my body is so tired from not sleeping well the rest of the time, and I roll over and close my eyes for another three. When I finally do get up, I may lie down for a nap later.

 

My husband, God bless him, finds this frustrating because it inhibits his ability to plan to accomplish things the next day. Being disabled himself, he understands, but it’s frustrating to never know whether or not I’ll be functional until I open my eyes. He doesn’t treat me badly because of it, but I know it is difficult. It’s not easy for me either, because when I can’t accomplish things I committed to, I feel like a failure. It also means I don’t get many of the things I need to done.

There are many flavors of this particular hell that go around with folks who have chronic conditions, and each of us has different ways of handling the situation. It never gets easier, either, because we’re either too sleep-deprived to be human or we’re out like a dead thing because our bodies have finally given up the ghost and let us rest.

All of us have people in our lives who just don’t get this whole sleep thing. They can go to bed, fall asleep in 15 or 20 minutes, and get up in seven or eight hours and go about their business. To them, who live lives unfettered by this complicated relationship with sleep we have, it seems like we’re somehow missing the mark. I can’t tell you how many times I’ve heard well-intentioned friends postulate that I feel so crappy all the time because I sleep too much. I appreciate their thoughts and intentions. Really, I do. However, they couldn’t be further from the truth. I sleep that much because most of the sleep I get doesn’t reach REM. That space we need in order to function.

Unless that person is your doctor (and even then, sometimes), don’t let the rest of the world tell you how much sleep you should or shouldn’t be getting. Your body, usually, knows what it needs. Don’t let anyone tell you that medicating yourself in order to sleep is somehow cheapening you. And please, please don’t let them make you believe you’re lazy because you sleep however you do. Many of them mean well, but they just don’t understand what sleep is like for us. You keep doing whatever it is you need to do and take care of yourself with the guide and care of your physicians. Take care of whatever it is you need to, and don’t apologize for it. You are who you are, and that’s OK.source

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