I’m tired. And I’ve been tired for a very long time.
I don’t remember the last time I got a good night’s sleep, and I don’t say that in an overdramatic parent sort of way. We all have a hard time with sleep and rest as parents–the kids get you up in the middle of the night, you worry about them, they wake up at 5:30 a.m. for no reason. Parenting is exhausting.
But that’s not it.
I don’t mean it in the daily grind sort of way. We get up and commute to work and subsist off caffeine. Our supervisors demand too much of us, and by the end of the work week, it’s all we can do to plop down in front of the TV and binge watch something so that we can have conversations at lunchtime. The capitalism grind is exhausting.
But that’s not it.
I don’t mean it in the school sort of way, where you stay up all night working on a paper or studying for finals and then hold your eyes open with tape the next day and crash afterwards, or where you and your friends are so wired after studying for those finals that you go to Dunkin Donuts at 3 a.m. in weird clothes to try and get whatever coffee and donuts you can to push through. School is exhausting.
But that’s not it either.
Everyone I know has dealt with those exhaustions, so I figured mine was just more of the same. It was easy to write off how tired I was when I was in high school–after all, school started at 7:40 a.m., and I was in AP classes and had extracurriculars and church and friends keeping me out late. And no, it wasn’t preventing me from getting at least 6-7 hours of sleep a night, depending on what I was doing, but of course I was tired then. And then college–the exhaustion ebbed a lot then because I planned my day around it. When selecting classes, I avoided anything earlier than 9:30 a.m. and kept my afternoons free for napping as much as possible. I did stay up incredibly late, but not so much that I wasn’t getting any sleep, and I still needed those naps in the afternoons, every day. But I wrote that off because, well, it’s college. Everyone naps in college. Right?
When I started working a regular 9-5 job, the exhaustion resurfaced. My first job, I had to leave the house at 7:15 a.m., at least if I wanted to beat traffic, and I was so tired that I kept making stupid mistakes on the job: filing things incorrectly, forgetting who told me what, that sort of stuff. Eventually, I left the job to substitute teach for a bit, and I always ended up at schools far away. I’d feel so tired during the morning commute that I’d have to slap myself to keep awake, and then I’d come home and nap as long as I could. I told myself that I was staying up too late or that I just had fucked up my circadian rhythm in college, because obviously, it was my fault, right?
And then I had kids.
And that didn’t help, because kids exhaust a person. At gentlest, they’re a lot of work. I blamed being more tired than the average parents on my being autistic, because all that sensory input and all that socializing at all times of the day forever is a lot. When I was working AND raising Sam, I’d reach the end of the work day and only have the energy to sit on my rocking chair with him and watch TV, to the great concern of both Kyle and Kat. They worried that me having another kid would result in more of the same, but for a hot minute, I proved them wrong. When the twins were little–not infants, but around the time Sam started kindergarten–we had a good time. We played all day, I was very tired but I could do stuff.
And then the pandemic and then my spine and then everyone started school, and I thought I’d be less tired, but here I am.
I’ve tried all sorts of explanations. The medication I’m on for my nerve issues does make a person pretty tired, so I thought maybe that was it, and that getting off the medication would make it so that I could get through my days without a nap again. The pandemic flushed my mood right down the toilet, and I figured that probably was a contributing factor. I had all of these reasons, and they finally came out when I talked to my prescribing RN a few months ago, frustrated that I was losing more than half of my day to sleep.
Because I love naps, but I like to take naps for pleasure. I like taking naps on days when it’s raining outside or crisp and cool or it’s gently snowing. I like looking out my window and letting nature kind of hypnotize me into a nice, relaxing sleep that doesn’t last too terribly long and makes me feel rested afterwards. These naps don’t make me feel rested. I think the last time a nap made me feel properly rested, I was fresh out of college and working just part time and dozing after work.
So anyway, I talked to my prescribing RN with frustration, and she referred me to a sleep therapist, thinking the issue was that I had insomnia. And, I mean. I have had insomnia in the past. We all have nights of insomnia. Most of mine lately stems from achy legs when there’s a front coming through or else the general weight of “ah, neat, living through yet another major historical event.”
BUT THE INSOMNIA WASN’T THE THING, AS IT TURNS OUT. Because my sleep therapist had me keep a sleep journal recording how long I thought it was taking me to fall asleep and how long I was sleeping, and as it turns out, I’ve been getting upwards of 7-9 hours of sleep every night, falling asleep within half an hour, and doing relatively well with the getting to sleep bit. And I’m even staying asleep, as far as I can tell, for most of the night, and that seems to have been the case for most of my life.
So my sleep therapist and I both said, “wtf” and she ordered me a sleep study. I got all these components that I brought home with me and strapped to my body–one for my chest to register whenever I took a breath, one for my nose to register when air was coming in and out of me, and one for my finger to measure my pulse and how oxygenated my blood was throughout the night.
AND WOULDN’T YOU KNOW. It’s not insomnia. It’s not me being lazy. It’s not me staying up way too late or being unable to handle life. It’s severe central sleep apnea, and it’s probably been with me for a very long time.
This isn’t the sleep apnea that you get when your tongue blocks your airway or your neck is just too heavy to keep your airways open. This is the sleep apnea you get when your brain forgets to tell your body “hey, maybe we should keep breathing” while you sleep. Rather than choking and gasping for air as your airway gets blocked by your tongue, and rather than being fixable with just losing weight or wearing a mouth guard, you just stop breathing.
Which is bad.
Moderate central sleep apnea happens when you have around 30 incidents of not breathing in a one hour period. The night I was monitored, I had 40 incidents, and my blood oxygen dropped to 79% (which is, for the record, REALLY BAD). The pulmonologist I saw after and my sleep therapist both told me to really push the sleep center to get me in as soon as possible so I could get a confirming study that would also see what kind of titration (read: forcing my body to breathe when it doesn’t do so on its own) works best for me.
A lot of people with sleep apnea do well with a CPAP machine, which forces air into your lungs at a steady pressure (set up during that in hospital study to see what pressure you need to just keep breathing while you sleep). Other people do better with a BiPAP, which forces air into your lungs at a harder pressure when you’re inhaling and a gentler pressure when you’re exhaling. And then there’s an ASV, which is a BiPAP that learns your breathing patterns and adjusts accordingly. And it’s all very complicated but necessary because my body cannot do this one very basic thing that it should’ve been doing consistently since I exited the womb.
I’ve got options, basically. And I’m looking forward to them on one level because I am so TIRED of being TIRED. It really is just an emotionally exhausting thing to be this tired all the time; you want to do so much and BE A PERSON, but you only have enough energy to exist. Even the things that are usually fun fall short because you’re too tired to put in the effort you want.
But then I’m also scared because I’ve been this tired for so long that I don’t know who I am without this permanent exhaustion that feels bone deep. Am I going to turn into some sort of raging dictator who’s angry that not everyone is on my level of dragon slaying awakeness? Or will I just be the engaged and clean mom I’ve wanted to be for a while? Will I finally be able to kick my own ass into actual activity or will I just say “nah” and remain a blob but this time able to focus on things?
And THEN I’m frustrated that it’s taken this long to recognize that it’s a problem because I kept dismissing my own health issues and had them dismissed by everyone around me. Of course I was tired, high school and college are hard. Of course I was tired, I was going to bed at 10:00 every night instead of 9. Of course I was tired, I had hobbies outside of work. Of course I was tired, I had a baby and then two babies. Of course I was tired, I was working and raising a kid at the same time. Of course I was tired, there’s a pandemic on and also I’ve got a spinal injury and depression. Why wouldn’t I be tired? Or maybe I wasn’t tired, maybe I was just lazy. Maybe it wasn’t that I couldn’t physically muster the energy to clean and roll around on the floor with my kids and go for a walk and have hobbies and a life. Maybe I just didn’t want to put in the effort. Maybe I preferred to just dick around on my phone because effort is bad, and after all, I am just a lazy Millennial with a rebellious streak or something.
I internalized all of that. And when I think about how that kept me from actually getting diagnosed and treated for so long, it scares me and enrages me. My level of sleep apnea is so severe that it can cause brain damage and seizures; somehow, I’ve gone this long without that, but you can only stay lucky for so long. Since I found out the results of the study, I’ve been afraid to sleep because I know that it’s entirely possible that this would be the night I’m not lucky.
And I’m furious that my exhaustion has been so easy to dismiss for my entire life, as me just being “low energy” or “lazy” or something along those lines. That it never occurred to me that anything about it was abnormal and that it was so easy to say, “oh, that’s normal.” It’s like when I had my gallbladder issues after Sam was born; I found it so easy to dismiss the 11/10 pain because the postpartum time is supposed to be painful, aches and pains are normal after you give birth, etc.
But that wasn’t normal. And this isn’t normal. And I don’t know what it is about me that makes me so ready to dismiss real medical problems that I have, but I do know that I feel vindicated that I haven’t been lazy my entire life, that I may very well be able to handle working and having a kid and having three kids and having hobbies and writing and exercising and all of that.
I’ve just been fighting with both hands tied behind my back.