Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

My Vampire Diary Part 1 - I’m Basically Nocturnal


Swooping bat

“3 am is the hour of writers, painters, poets, over thinker, silent seekers and creative people. We know who you are, we can see your light on. Keep on keeping on.”

@THECLASSYPEOPLE

During the recent Winter Olympics someone wrote a post in my sleep disorder support group on facebook about how none of us could ever be olympians because most of the events had early morning start times. A bunch of us laughed and commented, in on the joke, knowing all too well this far fetched thought said more about our reality than we even needed to explain or discuss. One of the group members commented about how if we flew in maybe with the time difference, jet lag, etc. we might actually be in top form to compete and almost have superpowers compared to the “day walker” athletes. (“Daywalker” is the term we use to describe anyone who sleeps at night and is awake during the day). Even before I had an official diagnosis for my sleep disorder, had realized there was something more going on than me just being a “night owl”, I’ve wanted to find some way to use my seemingly nocturnal clock to my advantage. I’m still working on that part. That post got me thinking though- between my sleep disorder, Raynaud’s, and me having low blood pressure I might not have a superpower but I do kind of resemble something supernatural- a vampire. Granted I don’t drink blood, but being nocturnal and always cold with my pale skin that doesn’t do well in the sun…several of my health issues point right towards vampire qualities.

Man holding moon

Vampire, owl, night owl, nightwalker are all descriptions I’ve used to explain my sleep disorder. Usually I’m also trying to throw some humor in and make the person I’m trying to describe it to laugh while giving them something that will maybe help explain it better, like I’ve always done with my Raynaud’s. I have Delayed Sleep Phase Disorder or Delayed Sleep Phase Syndrome (DSPS/DSPD), depending on who you ask and which label best fits the underlying aim of telling someone you have it. I didn’t find my sleep doctor (a wonderful pulmonologist, internist, critical care doctor) until May of 2016 when I was 32 years old, but I know looking back (hindsight!) I started really displaying symptoms of this condition when I was about 8. My Mom gave me her little brown desk lamp and I would have it on reading until late at night. Sometimes my parents would see it and come up to tell me to turn it off and go to bed. In middle school I would be up doing homework until late night, close to early morning and mornings before school were tough. I had quite a commute and getting up was hard. I’d be in a fog and struggling. I was late often. Then as a freshmen in high school the DSPD/DSPS really started to kick in. I’d be up until 2 or 3 am on the weekends and sleep in until the afternoon. On the week days I’d get up for school at 6am. The pressure of being in high school pushed me to want to shower before school, blow dry my hair, wear a cute outfit. Sometimes I’d fall asleep for a few minutes in the shower. I’d be to school for my first class at 8am. Then we were required to do a sport or after school activity. If we had a game sometimes I’d be home later, but on a practice day I’d get home at about 6 and eat dinner. Then I’d be so exhausted I’d fall asleep for 3 or so hours. I’d get up at around 11pm, do about 3 hours of homework and go to bed. Then I’d get up at 6am after only getting maybe 4 hours of sleep and start the cycle all over again. I managed to get through high school, took 5 AP classes total, and did fairly well with my grades. It’s hard for me to look back now though knowing if I hadn’t been so sleep deprived a lot and such a zombie in the morning I could have probably done even better and a lot more though. I’m lucky my parents never tried to force me to go to sleep earlier though; I didn’t ever feel alienated or like my own family was fighting against something I didn’t ask for or felt like I could control. I guess my parents figured since I was doing relatively well in school and not in any trouble why pick a battle like that.

Then when I started college I thought I wanted to go into medicine- be a doctor like my Dad, uncle, and Grandpa. I was the first grandchild on that side out of 4 girls and I thought carrying on that legacy would be amazing and make my Dad and Grandpa proud. Unfortunately I didn’t have a natural aptitude for Chemistry, didn’t enjoy it, and most of my pre med classes were early in the morning. Freshmen year my Mom would be calling me on the phone my ringer volume on high, I have loud alarms going off, people would be knocking on my door, but I still couldn’t really get up in the morning and when I did it wasn’t pretty. I could barely function.

Finally my Sophomore year I hit a breaking point. My Raynaud’s and stomach issues had already started getting worse and I was in organic chemistry. No matter how hard I worked and studied I wasn’t doing as well as I wanted and I was used to. I was SO sleep deprived and stressed. I remember almost the moment it happened- like a switch flipped on in my brain and the extreme anxiety and panic kicked in. I know being sleep deprived made it harder for me to cope and was one of main reasons the anxiety took hold of me like it did. I’ve been battling that anxiety, panic, and depression ever since.

Circadian Rhythm Disorders

Second semester I moved into an apartment by myself and stopped the pre med program. I took history, French, English, Philosophy classes and was able to get them in the afternoon or evening. I felt better and did well in my classes. It wasn’t until I was well into graduate school that I finally started research sleep or Circadian Rhythm Disorders (CRDs). I had been lucky in graduate school to get classes in the afternoon, but that particular semester I was assigned an early TA class. It was horrible. I could feel my physical and mental health declining from being so sleep deprived and I was scared I wouldn’t make it through the semester. One morning I rear ended someone going to that early class because I was so foggy and groggy I couldn’t stop in time. No matter how hard or what I tried I couldn’t get to sleep any earlier that 3 or 4am. Finally I started researching CRDs because I thought “this can’t just be me…I know I’m not lazy. There has to be something more to this that me just ‘not being able to go to bed earlier and get up earlier.’” Turns out there was. I found Delayed Sleep Phase Disorder and it fit me perfectly. I got an appointment with my sleep doctor and he confirmed what I already knew.

Basically everyone’s circadian clocks are wired to a pattern. If you study society you’ll find these clocks create a bell curve. Most people fall somewhere in the middle; what society would consider a “normal” night and day. Then there are the outliers. We don’t have a sleep disorder like insomnia or narcolepsy. We get good restorative sleep when we do sleep. It’s just our clocks are wired to much later sleep and wake times that lie further out on the bell curve. For me my natural clock wants me to go to sleep at about 7-8am and wake up between about 4-5pm. That’s why I feel wide awake and productive at night, but sleepy and unproductive during the day. Recently Nobel prize winning research also showed how each system in our bodies is set to our circadian rhythm (https://www.rockefeller.edu/news/19066-study-identifies-night-owl-gene-variant/) So even if the part they discovered in our brain regulating our wake/sleep pattern is removed the rest of our bodies will still be wired to that later clock. That explains a lot of my stomach issues and also why my Raynaud’s is a lot worse when I’m not sleeping my natural pattern.

Like my Raynaud’s diagnosis, my DSPD diagnosis was a relief but depressing too. There is no cure for DSPD. We can take “uppers and downers” to help a bit short term, but since those are artificial our bodies still won’t be getting restorative sleep and that can really damage our physical, mental, and emotional health. The best thing we can do is sleep out own natural rhythm. But that isn’t easy, especially when society and our loved ones and friends function on a “9-5”, especially for those of us who are pretty deviated and far off on the bell curve, like me. I’m still trying to find different hacks and methods for working my life around my sleep pattern. I’m still hopeful I can use it to my advantage somehow (after all not many people want to work the night shift). I guess being a vampire may not be a superpower yet, but at least I’m supernatural. Thinking that way at least makes me smile!

Until next Friday,

Amy L.

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