What You Don’t See When I’m Sleeping
Over the years, I have started writing so many drafts trying to explain what narcolepsy is when it seems the general understanding is only what people see in media (falling asleep wherever, whenever). Since it is something I’ve struggled with for so long, I have never felt what I wrote was sufficient enough or educational enough to really capture the reality. However, now my circumstances have become more complex and I fear if I keep hoping for perfection, I’ll never post anything. That said, here are some quick thoughts about my experience as someone with narcolepsy, navigating the world:
I’ve had narcolepsy, insomnia, and a circadian rhythm disorder for 14 years. I’ve had ADHD, anxiety, and depression for as long as I can remember. About 2 years ago, I found out I also have sleep apnea but then got pregnant in the middle of trying to figure out a treatment that works for me, and now, I have a 3 month old baby.
What does all of this mean? Narcolepsy is a neurological sleep disorder that affects my sleep/wake cycles. It’s like my brain doesn’t have good control of when I feel awake or tired, and I struggle to sleep well and at appropriate times.
When I am asleep, I experience an extreme amount of “arousals” or being woken up. This happens to everyone to some extent, you just usually don’t remember them. Mine is tenfold.
Instead of naturally progressing into each stage of sleep, hitting REM/dream sleep after about 90 minutes, I go immediately into REM sleep. I almost never get deep sleep, and REM isn’t restful. You know how you feel exhausted sometimes when you wake up during the dream state? That is just one facet of how it feels to experience excessive daytime sleepiness or EDS, which is a the primary symptom of narcolepsy.
I also struggle with something called sleep inertia, which is where I basically have difficulties shifting out of sleepy time into wakefulness. Medications and coffee all require time to take effect and require you to sludge through the fog enough to take them. Most of the time I don’t remember someone’s attempts at waking me up. Between the disruptions and sleep inertia, I am both easy to be woken up when I should be sleeping and hard to wake up when it’s time to do so.
Additionally, with issues controlling my sleep/wake cycles, I often feel sleepy during the day. I struggled a lot with this in school, sleeping in classes. I remember walking home from the bus stop and falling asleep on my bedroom floor because it was too much to make it to the bed. I remember getting in trouble staying at friends’ houses after school because I fell asleep at their house and didn’t notice my mom calling me. I remember falling asleep on the turf after track practice or in the bus shelter when I was waiting for someone to pick me up. I slept through a lot of classes in college before I was diagnosed. The only reason I managed to get through was because I learned quickly and felt school was mostly easy. Probably a lot of hyper-focusing before I was medicated for my ADHD.
When it’s time to go to sleep, between my insomnia and circadian rhythm disorder, I find it extremely difficult. With the ADHD, I also feel like my brain never shuts up. Thoughts are always going 100 mph and I need noise to distract me.
My circadian rhythm disorder means I naturally feel more awake at nighttime vs daytime. It can be hard to go to sleep during regular hours, especially if I spent all day feeling like shit and finally some of the “fog” has cleared. I’d compare it to how parents like to stay up late to get some alone time because they spend all day focusing on their kids, even if it’s to the detriment of themselves.
Honestly, I am not writing this for sympathy although a little empathy is always welcomed. I know reading about each disorder or diagnosis can be one thing, but not necessarily enough to put yourself in the shoes of someone else’s experience, especially with all the other compounding issues on top of it.
Anxiety and depression are their own beasts which are hard to explain, but they also affect sleep. Imagine trying to lay down but your room isn’t tidy and that gives you anxiety. Your to-do list is streaming through your mind making you anxious, you look over at your partner and your baby and check if they’re breathing. You worry about the last time you’ve heard from your parents, the project you’re working on at work, the texts you haven’t replied to, the friendships and relationships you need to do a better job of fostering and nurturing, the bills you need to look at again, your own health, etc. and then the blanket isn’t right, there’s a tag itching you on your shirt, your socks feel too tight suddenly and you check the clock and if you go to sleep right now you’ll get 3 hours of sleep but you’re also anxious about oversleeping and now there are birds chirping and the sound is irritating too. When you wake up, you’re exhausted, you have a million things to do, and now your brain (depression) is telling you that you’re not a good enough mom, partner, friend, or employee. Your brain is telling you everyone is judging you and nobody gives you the benefit of the doubt that you WANT to do more, be better, be more and are trying your best but maybe not quite hitting the mark.
Your brain is saying you’ve woken up too late and there’s no point in trying, things will never get better, and you should just give up. It isn’t a doom spiral that can’t be managed because you’re used to thinking worst-case scenario and have some coping mechanisms to push through all these thoughts, but they take active energy to work against. Energy you don’t have.
When I can be medicated, which I couldn’t take most things while pregnant and still can’t while breastfeeding, it’s like walking a tight rope. A stimulating medication and anti-depressant can’t be taken too late or they feed my insomnia. They can’t be too much or they feed my anxiety. My night meds for sleep have a ton of contraindications, make my sleep apnea immensely worse, and are a highly controlled medication - which makes it difficult to acquire, expensive and something my insurance requires a lot of paperwork to get, sometimes quarterly. They don’t always work, and all they do is put me into a deep sleep while having an insanely high sodium content that must also be considered. Especially for someone who had severe preeclampsia and remaining blood pressure issues postpartum. If I take them, I can’t eat or drink water 2 hours before or two hours after. I have to wake up 2.5-4 hours after taking the medication to take it again. That second dose can’t be too close to when I need to wake up and I have to give myself time before I’m okay to drive after.
My anti-depressant and my night meds also make me really hot, and I really need cool temperatures to sleep which aren’t always easy to obtain. If I’m laying it all out on the table, I am “high maintenance” when it comes to sleep. I need a comfortable bed and a pillow between my legs, space to roll around and not wake up my partner, and the biggest part really is cooler temperatures and air movement. I am extremely intolerant to heat.
Dealing with this buffet of disorders means I have to be extremely intentional in how I spend the energy I do have, which involves a lot of planning and mental energy. Sometimes the hardest part isn't deciding whether I can do something. It's deciding what I won't be able to do afterward if I choose to do it. I am thinking of what things I can rule out to save energy, and ultimately planning my days around sleep. Because everything takes more effort for me, I hope people understand that when I have plans with them or I’m spending time with them, it means I really want to be there. Sometimes I want to be there and can’t, and it sucks but I’m learning to be realistic about my capabilities. Or sometimes I’m there but I feel like an absolute ghost, like I just stayed awake for two days and I’m in an extreme survival mode. Being really tired means I might be more irritable, I might take longer to process what I’m seeing or hearing and I’m slower to think through things. I might have less of a filter in what I say or my facial expressions. Usually, I feel like if I’m that far gone, it isn’t the quality time people really want or that I want but sometimes you have to just show up to appease people or meet responsibilities. I know that’s life for everyone, to an extent. I know that having an invisible illness is harder for people to understand. I totally get the inclination for someone to express when they’re tired and it really isn’t a competition. You’re allowed to be tired, too. I just hope people can understand neurologically I’m at a disadvantage and it’s not quite the same thing. I hope the people in my life understand that my absence isn't a measure of how much I care, just as my presence doesn't mean being there was easy.
