What It's Like Living With A Sleep Disorder
In the future I'll share more sleep tips and tricks, but first I'm educating and sharing about my personal relationship with sleep.
Sleep disorders are highly misunderstood and stigmatized. Just because someone has a sleep disorder does not mean that they are lazy, have bad sleep hygiene, or are undisciplined. When I share what my sleep disorder is and how I experience it, I’m usually met with a lot of confusion and misunderstanding, which can be frustrating and sometimes triggering for me. I’m aware that this post is likely going to open myself up to more confusion and misunderstanding from readers, and I’ve accepted that.
“I’m going to share more about my condition to educate on what healthy sleep is, spread awareness that sleep disorders exist, and in future posts share tips and resources for getting better sleep that can be helpful for everyone.”
If someone asks me how my sleep was, I usually will say something superficial like “It was okay,” or “It sucked,” or “It was good, how about you?” so that I don’t get pulled into a bigger conversation where people will try to relate to my experience. To me, talking about this and going through the emotional labor of educating others is exhausting (don’t worry, I gave myself lots of time and space to write this). I tend to be a private person in general, especially when it comes to my health. When I do open up and attempt to share about my sleep struggles, many people over the years have made incorrect assumptions about me and/or tried to tell me all the things I’m doing wrong and the reasons why I’m experiencing disordered sleep. (I will be deleting any comments along these lines.) I like to make the assumption that when people engage with me in this way, it is out of genuine curiosity and concern. But after a while, it starts to feel like they’re ignoring what I’m saying because it’s easier for them to believe a simple, inaccurate reason for why there’s something wrong with me. And the last thing I want is pity. Being in the wellness and yoga community, I’ve pretty much heard it all at this point, from “you just need to go to bed earlier” to “it sounds like this is past-life trauma and you’re allowing yourself to be possessed by spirits.” Having good sleep hygiene and an exorcism is, unfortunately, not a proven treatment for my condition. 😂
If you don’t have disordered sleep, you probably won’t experience the types of things that I experience around sleep and fatigue, and that’s a good thing. People with different sleep issues may have similar symptoms and experiences but with different underlying causes. The only way I have experienced sleep is while living with a sleep disorder, and it’s a major part of my own life and wellness journey. So, I’m going to share more about my condition to educate on what healthy sleep is, spread awareness that sleep disorders exist, and, in future posts share tips and resources for getting better sleep that can be helpful for everyone.
I have always sleepwalked. Not every night, maybe more like once a month, I’ll notice on my Oura Ring app that I got up and walked around while asleep. The intensity and frequency of my sleepwalking might increase from time to time due to factors like my stress, hormones, medications, and mental health. When I was a kid, my parents would try to wake me up to go to school, and it would trigger a sleepwalking episode. It must have been a challenge parenting me because I was unable to wake up to an alarm. I would pretty much always sleep right through, and it was like that through most of my undergrad college years.
I was reassured that as I got older, I would just grow out of it. Rather than growing out of it, I put in a ton of work to train myself to wake up for certain things, and it was very physically and emotionally challenging for me to do so. When I went to college, I had a required 8 am class that I often couldn’t get to because I couldn’t wake up. At that time, I was afraid of seeking accommodations because I was ashamed, and I didn’t want anyone to know that I was struggling with this. I wanted to be treated as an adult, and I convinced myself that I just needed to try harder. The professor took pity on me and allowed me to make up in-class assignments, and I got a C (I eventually transferred, and it was nice that that grade was erased). After that semester, my required classes weren’t so early, and life went on.
Sometimes, I would wake up outside in the middle of the night. I remember one time I went to bed, and then suddenly, I was outside in the rain, and my roommate was trying to get me to go back in. Sometimes, I would be having a nightmare and wake up while I was performing some action, like obsessively locking a door or window over and over. Actually… I still do that sometimes.
One time, I woke up to a fireman shaking me awake in my bed in my dorm room. I woke up in a total freeze response and then I heard the fire alarm going off at full blast. It must have been going on for a while and I had slept through. One time I woke up to scraping the skin off my hands in the kitchen with an abrasive sponge. In my dream, I had been washing the dishes. One time I woke up in the bathtub for seemingly no reason at all, I learned later that someone tried to wake me up and I got away from them to hide while I was sleepwalking.
Being woken up by someone while sleepwalking is a terrifying experience for me. In that moment, it’s like I can’t remember anything about myself or where I am or who the person is who is waking me up, and at the same time, there’s this feeling of imminent doom like the whole world is about to come crashing down around me. I sometimes wonder if people with dementia or other neurological conditions experience something similar. My instinct is to attempt to get away or try to defend myself. If I wake up on my own, I still feel pure confusion, but there’s a lot less fear involved.
This has been frustrating for some of the people I’ve cohabitated with. I’ll engage in complete conversations or get into arguments with them while I’m asleep and I won’t remember any of it.
All of this is why it’s challenging for me, and many others with a sleep disorder, to talk about it. It’s not trusting my own body to keep myself safe; it’s feeling gaslit when people tell me what I was doing while asleep; it’s guilt and shame and feeling like I’m not doing enough to be well rested; it’s having to advocate for myself at school or work to ensure I keep a consistent sleep schedule; it’s being hyperaware of my attendance and reliability and setting lots of alarms to ensure that I will never sleep through something; it’s feeling like I’m missing out for not being able to hang out late; it’s sacrificing my health for the occasional late gig or late night with friends, and taking weeks to recover. This isn’t even the full picture of my experience, it’s just the highlight reel.
As I was working on my doctorate, I was under a great deal of stress. I started having ocular migraines, and other health issues popped up. Sometimes, I would wake up sore, in pain, or with random bruises. I decided to recommit to the basics: eating healthy, moving my body a little bit every day, drinking water, and getting good sleep. I bought a Fitbit and started tracking my daily movement and sleep, and that’s when I became aware of something strange…
Let’s take a short side-step to be on the same page with sleep terminology.
All humans sleep in cycles, and healthy adults need about 4 to 6 cycles of sleep in a 24-hour period. This is where the recommended 6 to 9 hours of sleep for most adults comes from.
Each cycle lasts about 90 minutes and has four stages of sleep: N1, N2, N3, and REM.
N1 is the first and shortest stage of a sleep cycle. The N stands for non-rapid-eye movement sleep. It lasts for about 5 to 10 minutes and is the lightest level. It’s easy to wake someone up when they are in this stage. The brain emits theta waves. We are in this state for about 5% of the total time asleep.
N2 is a deeper sleep stage than N1. During this stage, the body prepares for N3 by lowering body temperature, slowing breathing and heart rate, and slowing brain waves. Memories from the day are processed. The brain emits sleep spindles, brief, powerful bursts of neurons firing, and K-complexes, the longest delta waves the brain is capable of, but only for one-second intervals. We are in this state for the longest time, about 45% of the total time asleep.
N3 is also called ‘deep sleep’ and lasts about 20 to 40 minutes. However, as we age, we spend less time in this stage and more time in N2. This is the stage of sleep where recovery happens. Tissues, bones, and muscles are being grown and repaired. Waking in this state can cause brain fog. The brain emits delta waves. We are in this state for about 25% of the total time we are asleep.
REM, also known as ‘active sleep,’ is the state in which we dream. During this state, there is rapid eye movement, and the muscles in the body enter a state of temporary paralysis. The first cycle of REM is shorter, about 10 minutes and subsequent cycles become longer. The brain emits beta waves, similar to when we are awake. We are in this state for about 25% of the total time we are asleep.
My Fitbit alerted me that rather than N3 taking up 25% of my night of sleep, it was taking up 50% to 80% of my sleep every night.
Around the same time I was learning about my sleep states, I noticed that I would sometimes wake up with my hands hurting. Come to find out, I was injuring myself in my sleep. It had started a while ago but seemed to be getting worse over time, and it was unfortunately starting to affect my ability to play my instrument without pain, so in 2018, I finally went to get a sleep study.
I went to the Mayo Clinic and underwent a sleep study with one of the foremost experts in parasomnias (sleepwalking and other movements during sleep). I was screened for a wide variety of possible sleep and breathing issues, including sleep apnea. The next day, I finally got a name for what I was dealing with: N3 Parasomnia with N3 pressure.
I have short parasomnia episodes most nights during my N3 stage. I am completely unaware of them, and I don’t do anything physically during them, but they can be seen by measuring my brainwaves. A parasomnia episode can range from getting up and sleepwalking to being an internal only experience and only lasting for a second. Although I am completely unconscious and asleep, my brain perceives all parasomnias as being awake and also perceives the time between parasomnias as being awake.
Let’s say I have a parasomnia episode at the beginning and end of an N3 stage, my brain might believe that I was awake between those two episodes and try to stay in N3 a little longer before going into REM. After I’ve completed 4 to 6 sleep cycles and it’s time to wake up, depending on how many parasomnia episodes I had and when they were, my brain might reach the incorrect conclusion that I never got any N3 sleep. When this happens, similarly to people who experience sleep deprivation, my brain forces my body to go into another N3 stage at the end of my completed sleep cycles. This desire for my brain to get extra N3 sleep is called N3 pressure.
As you can imagine, if I wake up during an extra N3 stage, I feel extremely tired, and it can take a few hours for me to stop experiencing sleep inertia. This is why as a kid, I had such a hard time waking up (luckily as an adult I’ve become a lighter sleeper and have trained myself to reliably wake up to alarms.) And why as an adult I’ve have had such a rough time with caffeine addiction.
At this time, the only medically recommended cure for my condition is the lifelong use of benzodiazepines. I have decided for personal reasons not to start taking this medication until I feel I absolutely need to. My sleep specialist referred me to a therapist so that I could work on reducing my stress as a way to help manage my condition. They also recommended that I wear gloves to bed to protect my hands and to take a nap every day to try and remove some of the N3 pressure that gets built up over time, which has been very helpful for me.
These days, I am doing pretty great, aside from sleep inertia struggles and just feeling really tired sometimes. Luckily, I haven’t had as many issues hurting myself in my sleep since I made some improvements in my mental health, got out of an unhealthy relationship, and completed my degree. I created a nightly ritual that has helped me not sleepwalk as much. I have tried pretty much every supplement out there with little to no success, and am still not interested in exploring medication at this time. So I’m just taking it day by day and doing my best to prioritize my sleep schedule and sleep hygiene, and of course, my mental and physical health as well. I’m grateful that I have this space to share what living with a sleep disorder is like without having to necessarily talk about it in real life.
If you’ve made it to the end of this article, thank you so much for taking the time to be more educated on sleep and my sleep disorder. I appreciate you. 💜
If you want to learn more about what happens when we sleep, here are some sources I pulled from to assist with the more educational parts of this blog post:
https://health.clevelandclinic.org/your-complete-guide-to-sleep
https://www.verywellhealth.com/the-four-stages-of-sleep-2795920