I have struggled with insomnia since early elementary school. It was pretty much always my mind that got in my way—whether I was worried about something bad or excited about something good, I couldn’t seem to switch off my overactive mind well enough to drift off to sleep. It was normal for me to go downstairs hours after I had turned my lights off to tell my parents that I couldn’t sleep. Sometimes eating a snack helped, sometimes my mom would sing or read to me, and sometimes she even read out loud from incredibly dry, dense books to basically bore me to sleep (My first exposure to Homer’s Odyssey was from having it read aloud to me when I was still too young to understand 90% of it.).
This problem waxed and waned over the years, but it meant that I had to get pretty good at functioning on fairly little sleep. When I habitually went to bed late and got up early, I would get so exhausted physically that my insomnia basically disappeared. It was so freeing to be rid of those restless, wakeful hours in bed that I embraced getting only 4 hours of sleep a night throughout much of college. It even became part of my identity: Stephanie, the girl who barely sleeps and drinks her coffee stronger than anyone. I did catch up on sleep from time to time, occasionally sleeping 14 hours at a stretch and waking up completely disoriented, but I basically lived for many years on not nearly enough sleep. And for the most part, it seemed like I was functioning fairly well.
But not anymore. Now, not getting enough sleep makes all my autoimmune symptoms come back, literally overnight.
I’m not sure when it happened, exactly. In fact, I think it was probably quite gradual, but I began to struggle more and more to function when I got less sleep than I really needed. In the six months or so before I was diagnosed with MS, it got even worse, and anything less than 8 hours of sleep was misery, while I simultaneously found it harder and harder to sleep well. Nerve pain in my legs kept me up and made my sleep more restless. Waking up at night became a frequent thing, and once I was awake, I often couldn’t get back to sleep, as I would lie awake panicking about one or more things (most of which never seemed quite so panic-worthy in the light of day). Basically, my sleep had always sucked, but for a long time, I didn’t notice it having a huge impact on my life. That had changed fairly dramatically over a period of several years. And by the time I was close to getting my MS diagnosis, it had progressed to sucking in new ways that had a direct, extreme, miserable impact on my life.
So ever since then, I’ve been finding ways to sleep more and sleep better. Quite a few resources have helped me, the most comprehensive of which has been Go to Bed. Some of the things that I do regularly because they made a difference include:
- No TV or other screens after 8 pm
- Dim indoor lighting only after sunset, often accompanied by wearing amber-tinted glasses to block blue light
- Keep my blood sugar stable (because some anxious 4 am awakenings turned out to be blood sugar crashes)
- Write down everything on my mind before I go to sleep and then tell myself it’s there to be worried about during the day, not at night
- A consistent bedtime routine that I stick to religiously, every night, to help my body realize it’s time to sleep
- Go to bed earlier that I think reasonable even though I don’t want to
As a lifetime night owl, even in early childhood, the last point is by far the most difficult for me. But the price for missing sleep has become too high, so I really try to go to bed by 10, which feels ridiculously early to me. But the more often I do it, the easier it gets. I still can’t wake up at 6:30 feeling good. I don’t think I’ll ever be able to rewire myself to be a natural early riser. But if I get my 8 hours, my morning grumpiness passes fairly quickly, and I can actually make it through the day. But my night owl nature means that this is the part where I slip up most often.
Last night, for example, I came home from a really energizing choir rehearsal. I was wide awake, and my mind was active. I couldn’t bring myself to go to bed right away, and even when I did go to bed, I couldn’t calm down enough to sleep for quite a while. So I ended up reading until 1:00 am. And today? It’s not just that I feel like I got 2-3 hours less sleep than I needed. Today, I feel like a stiff, cranky old lady who can’t think straight. My nerve pain is back. I don’t feel like I could possibly go grocery shopping or cook my own food. And it’s discouraging because over the past couple weeks, I’ve been eating well, I’ve been getting gentle movement every day, I’ve been getting a daily dose of sunshine, and as a result, I’ve been feeling really good. It has felt like AIP is helping. It has felt like I don’t have a serious autoimmune disease. It has felt like I can live a normal life. But for about a week now, I’ve been getting just a little less sleep than I should each night—maybe just half an hour less. And then I had one night of less than 6 hours of sleep and all of a sudden, I feel like I have MS. I feel like it’s all too much. I feel like none of the other stuff I’m doing is helping, even though I know it is.
Not getting enough sleep makes me go from feeling healthy to feeling sick in just one night. All the MS symptoms that have faded into the background come back with a vengeance, literally overnight.
It’s easy to get discouraged. It’s easy to think I might as well eat whatever I want because I’m going to all this trouble and I still feel rotten. But that’s not it at all. I just have to get some sleep tonight. I just need to go to bed when my kids go to bed, and I know things will look less bleak in the morning.