Moderatrix Note: “The Labor of…” is a somewhat intermittent series to re-explore things in daily life taken for granted before living with chronic pain and/or disability. This is a space to share experiences.
My relationship with sleep has changed dramatically throughout my life as I have grown and changed. I am told that I was one of those babies that slept so soundly that my mother could vacuum under my crib during nap time and that even a diaper change didn’t phase me. Later as a toddler I would protest nap time only to succumb to two solid hours of heavy, sweaty sleep. My middle childhood years were plagued with chronic bed wetting, which my mother didn’t totally understand at the time (she would make a scene of putting cloth diapers on me in front of the family at eight years old, or showing my wet sheets off to anyone who would see them) until they discovered that I was both a deep sleeper and had a tiny bladder that didn’t keep up with the rest of my body’s accelerated growth. I also had frequent kidney infections which exacerbated the problem. In High School I crawled through with an average of five hours a night between working as many hours as child labor laws permitted on top of track and band practice with AP classes and boyfriend who somehow managed to squeeze in there.
College was my first experience with insomnia. I am pretty sure it was related to my OCD and subsequent depression, but I can’t be sure. I would go for days on very few hours of sleep, and after a couple of weeks I would crash and not be able to stay awake at all. I eventually scheduled all of my classes on Tuesdays and Thursdays so that I could work from sun up to sun down and beyond the other five days while still participating in college marching band (Go EMU!), and still managed to perfect a beer purification system out of my liver. Some how sleep was something I was able to live without for extended periods of time.
Sleeping positions changed as well. I was a stomach sleeper for as long as I could remember until I got pregnant at 21, and even then I only gave that up when it became physically impossible. At that point I begrudgingly gave in to the side sleeping that was all my doctor could rant about. I had to use around five pillows in addition to the ones under my head just to get comfortable on my side.
Sleep was something I took for granted. I loved sleeping. I hated that I having to admit that I needed it.
Now, I dread it.
Sleep has changed again. I have to consider every tiny detail of sleep, from the time and amount to the bedclothes and the temperature.
I have to get just the right amount. I can’t sleep too little or I will have no energy at all the next day and my body will hurt intolerably to make up for the energy I didn’t restore. If I sleep too much I can’t adjust and I will fall asleep if I sit still long enough. I have to try to get to sleep at the same time every night, weekday and weekend. We don’t have the luxury of “school day” or “not school day”. We still have to adhere to relative bed times on non-school days to keep my body on a schedule. Not being tired can not be an excuse, and that melatonin supplement pill becomes a dear friend, something that does not interact with my meds, but helps me fall gently asleep.
The environment has to be just right. Too much noise will distract or frustrate me. If I am awake or anxious it keeps my brain active and stop me from relaxing. If it is too quiet the silence is too loud (plus, I have tinnitus, so the ringing gets a little intense), so we have an iPod with sleep music to play quietly (it has ocean sounds under music!). The Guy is a cuddly sleeper, and he is very conscious of the possibility that he could hurt me while we sleep. He worries that he will also make me too warm, and sometimes I worry that he doesn’t sleep well because of this (although, in truth, the only being on the planet that could sleep easier is a newborn puppy). He will run a fan or the AC if he thinks that he is kicking off too much heat, but as soon as he thinks it is too cold he shuts it off.
The mattress that came with our beautifully furnished ville in Seoul (we could only bring so much weight of our belongings to Korea) was far too hard for me to sleep on and caused me so much pain that I would cry and could never find a comfortable way to lie, so we had to put a memory foam topper for it, which isn’t as good as the memory foam mattress we had to put in long-term storage in California, but it helps immensely. The pillows have to be just right. One isn’t enough for my neck support, but two is too many, so we had to get a special cervical pillow made from foam to support my head and neck just right, otherwise I would wake up with a worse headache than I already have almost daily. Since being pregnant I am unable to sleep any way but on my side, and I have had to learn how to do this without my limbs touching each other, because the weight of them is too much to bear.
The bedclothes have to be right. Soft enough and not heavy, because sometimes the weight on my legs can cause me to cry from the pressure. If they are too thin I get too cold, and extreme temperatures one way or the other exacerbates any existing pain. This goes for all the blankets we use. We also have to make sure that they are tucked in well (this is where my boot camp education pays off!) so that they don’t come undone and wind around my limbs which will also cause me to awaken in agony, but not too tightly so that I can move around freely so my joint don’t stiffen. The tiniest things that would maybe bother someone else, cause them to shift in their sleep, will jolt me wide awake crying out in pain. This ties in with nightclothes, too, because I have to make the same decisions. I can’t have things that bunch up around my legs, but I have to have enough layers to keep me warm, and socks that are thick enough but that don’t have restricting elastic. It’s a razor thin edge.
Any little misstep one way or the other throws a sprocket in the works and that can mean the difference between a tolerable pain/adequate energy day and a miserable one. It can mean the difference between a day where I can accomplish a few tasks and maybe have time for a brief walk or a day with my feet propped up carefully. All of this work has done nothing for my relationship with sleep. I still love actually sleeping, but hate admitting that I need it. Now, however, I hate that I need it so badly, and that my body will take it whether I am willing or not, but that even if I do need it sometimes it will turn upon itself to disrupt what I have worked so carefully to craft. Sleep is no longer indulgent or relaxing or restful. Sleeping has become a laborious effort.