Fatigue is one of the most common symptoms of autoimmune disease. And not just the kind of fatigue you feel after a long day or a bad night—we’re talking crushing, debilitating, heavy-as-lead, bone-deep fatigue. So it’s not surprising that you hear a lot about naps, sleeping 14 hours, and how much folks love sleep in the autoimmune community. So let’s get this out of the way right at the beginning: I hate sleep. I don’t like naps. I don’t enjoy waking up in the morning, rolling over and going back to sleep. I am not a sleep person—never have been and probably never will be. And ya know what? That’s totally OK.
To be perfectly clear: I understand the importance of sleep; I may not have really embraced it in younger years, but I totally get it now. In fact, I wouldn’t be surprised if chronic sleep deprivation was a major contributing factor to my developing Multiple Sclerosis. One of the liberating things about going away to college was that there was no one nagging me to get more sleep, so I could sleep as little as I wanted and only catch up when it became really, really necessary. Obviously, this did me no favors health-wise, but I functioned surprisingly well on very little sleep, and I actually enjoyed it.
So in the years leading up to my MS diagnosis (I suspect I had MS for at least three years before being diagnosed), the fact that I had to spend much more time in bed just to function was torture. I had to sleep more, spend more time in bed, and just generally get a lot more rest. And I hated it. But I couldn’t fight it, and I was beginning to read up on all the immune regulation that takes place when we get good, restorative sleep, so I dutifully worked on improving my sleep habits. Those habits got much, much better over the years, and I began to see how much getting more sleep helped me both in an immediate, day-to-day sense and in the longer-term management of my health. But as a lifelong night owl, as a person with a history of depression, anxiety and insomnia, my sleep still wasn’t dialed in, and I still hadn’t figured out how much sleep my body actually needed to feel good (as opposed to simply feeling OK).
So I spent March focusing on sleep. This was the third of my twelve health projects for 2017. I made a conscious effort to go to bed much earlier, to eliminate things I thought were interfering with my sleep, and to avoid sleeping in except when I had an obvious deficit to make up for.
Here’s what I found out:
- I cannot watch TV in the evenings at all. If I watch so much as one episode of one show after my kids go to bed, I will end up falling asleep 1-2 hours after I otherwise would. Some of this is just the fact that the 40ish minutes I’m watching TV delays my going-to-bed routine; but some of it is the fact that TV—any TV—is stimulating and interferes with my getting sleepy in the first place.
- Spending time on my phone in the evening, on the other hand, does not interfere with my sleep, as long as I don’t check my email. Email is antithetical to winding down, it seems.
- Doing chores after dinner is almost as bad as TV. Either I get stuff done during the day, or it has to wait until tomorrow.
- Keeping my circadian rhythms consistent is essential. This is why I put strict limits on how much I allow myself to sleep in and why I keep the lights very dim after dinner. Sometimes I wear blue-blocking glasses, but as long as the lights are dim, I don’t necessarily need them.
- Evening showers are magical. If anything is keeping me amped up and too awake in the evening, a shower will help me wind down. The key is to brush my teeth and put on pajamas as soon as I’m done showering and then go straight to bed.
- Evening activities are bad news. I have choir rehearsals once a week, and even though I’m home by 10, I rarely get to bed before midnight because being out and about with people is just so stimulating. As a result, I’m always exhausted the day after choir and completely useless. At a loss as to how to get myself calm enough to go to bed soon after getting home, it finally occurred to me to try taking a shower as soon as I get home from choir. Bingo! It worked. I still get less sleep on choir nights, but it’s only about an hour less now and not 2-3 hours.
- Having focused on movement in February, I’ve been getting outside nearly every day, usually in the first half of the day. I seem to sleep worse on the days I don’t get outside, and that observation has reinforced my movement habit.
- My body seems to need 7 hours and 50 minutes of sleep to feel really good. When given enough time in bed and left to its own devices, this is how much sleep my body will inevitably get, as recorded by my nifty Oura Ring. The only exception seems to be the night after choir night, when I will sleep about one extra hour, after which my body seems to be caught up, since the following night I will be back to just shy of 8 hours.
- I now know what it feels like to be the first person in my family to wake up. As a night owl, my kids have historically always woken up before me, and my first seconds upon waking up have almost always involved responding to some sort of demand from a child. It has been like this for nearly ten years. I always knew I hated waking up this way, but I couldn’t seem to change it because I couldn’t seem to force myself to get up earlier. But now that my kids don’t wake up at 5 am anymore and now that I am actually getting an ideal amount of sleep, I usually wake up before my alarm and am the first person up. And lemme tell you: it makes a HUGE difference!
I still don’t like sleep. I will never understand people (like my husband and quite a few of my friends) who looooove it or refer to it as their favorite hobby. But now that I seem to have figured out how much sleep I need and how to get it, I’m making peace with the fact that I need to prioritize sleeping sufficiently and well in order to manage my health. I definitely feel better now that I’m sleeping better, so I’m going to keep doing what I’m doing to make sure my body gets what it needs.
But that doesn’t mean I have to like it!