One year ago, I was sitting in a stark hallway clutching my pillow and a cooler full of snacks, waiting for 8pm to hit so that I would be allowed into the sleep clinic. On the first anniversary of the sleep study that brought me my diagnosis, I’m going to take a look back at the experience.
Scheduling Woes
It took 7 months to finally get this sleep study. The clinics rescheduled me three times before I was finally able to get in. The first time they called to say I’d need to reschedule, I cried with disappointment (I was at work! Shout-out to my 1st AC who was really understanding and handled it so well). I hadn’t realized how much I was depending on the sleep study, how much emotion had built up and was being held at bay by the thought of finally having answers. When I found out that I was going to have to wait even longer, the idea of continuing to live in this miserable, perpetually exhausted state just felt like too much.
In hindsight, I know just how lucky I was to get in when I did. At the time, I was hearing a lot about this virus that had made its way to the U.S. All of the staff at the sleep clinic were wearing face masks. Even then, there was a part of me that suspected they might postpone the sleep study yet again. Looking back, who knows how much longer it would have taken to get my diagnosis.
I went into the sleep study with a sense of urgency, like it was a test and I had to do a good job. Sure, if results were inconclusive, we could start the process of getting a second sleep study approved by my insurance, scheduled, etc. But the thought of waiting any longer felt crushing. I had to prove to them that what I was experiencing was a real thing.
Getting ready
After so much waiting, the night had finally come and I had no real idea what to expect.
The paperwork they had sent me suggested bringing a few items that might make me more comfortable – a pillowbfor the overnight and food and something to keep myself occupied the following day during the MSLT (Multiple Sleep Latency Test). An MSLT consists of a series of 5 naps to track how long it takes you to fall asleep and whether you enter REM sleep. For a person without narcolepsy, it takes between 90-180 minutes into the sleep cycle to enter REM sleep. A person with narcolepsy will often fall asleep quickly, regardless of the quality of the previous night’s sleep, and may enter REM sleep within 20 minutes, even during a nap when a person without narcolepsy would typically not.
I showed up with everything I could think of. A pillow, my most cozy blanket, multiple books and comic books, my computer to watch movies on, snacks and meals, and my slippers. Looking around the hallway at the other patients waiting with me, a couple of people had pillows at most. I looked like I was moving in for a week.
A room with no view.
The windowless room was like a cross between a hospital room and a motel. They tried to make it cozy, but it was still very clinical. I was SO thankful to have brought my blanket – I like to sleep with lots of thick blankets, even in the summer, so this sheet and thin blanket set-up would not have cut it.
My nurse was wonderful, we chatted for a while about how much we love travel and how this pandemic thing might affect that. And she had narcolepsy! This was the first time I had the opportunity to talk to someone else who knew what I was going through. She asked me what my sleep demon was – a question that I would learn was fairly common amongst people with narcolepsy. Hallucinations and sleep paralysis are common symptoms of narcolepsy, and there tends to be a common theme or recurring person/creature/experience that is unique to each of us.
She reassured me that it can be really difficult to diagnose narcolepsy, and not to be discouraged – that if the results of the sleep study were inconclusive, it didn’t mean that I didn’t have narcolepsy.
Wait.
What?
How was this encouraging? As if the pressure to not let the unfamiliar and uncomfortable setting affect my sleep wasn’t already high enough, now I felt that I had to perform even more perfectly than I had originally thought. Great.
Sleeping as snug as a… robot.
My nurse attached wires to me. Lots of wires. Sticking out of my hair, stuck to my chest, run down the leg of my pj pants. These hooked up to a box that hung around my neck, which then plugged into the wall. If I had to leave my room, say to go to the bathroom in the middle of the night, I would have to ask someone to come in and unplug the box.
She told me to let her know when I was ready to go to bed, as if I was welcome to sit up and hang out until I wanted to settle to go to sleep. “How about right now?” I was ready to get this over with, and honestly, I was tired. She slipped the heart rate monitor over my finger and left me to my pitch-black room.
After a calibration process (look up, look down, blink three times, wiggle your left foot, wiggle your right foot, etc) it was time to go to sleep.
I layed there, staring at the backs of my eyelids (or was it the ceiling? Everything was the same shade of blackness). I willed myself to fall asleep. I begged my brain to cooperate and prove to the computers that I wasn’t making this all up. The fear of accidentally detaching one of the many wires stuck all over my body kept me unwilling to move around.
Surprisingly, the worst part was the heart rate monitor slipped over my finger. At some point, I woke up convinced that the tip of my finger was on fire. At first it felt like it was being seared, then it faded into what felt like intense nerve pain. Eventually I calmed down a bit more about it and was able to fall back asleep. I was too afraid to say something about it – the thought about calling out in the darkness to some technician in a control room felt like a non-option. Having someone come in, turn the lights on, create a disturbance – I was terrified that this would wake me up more than I already was, and would prevent me from falling back asleep.
Naptime nightmare
After what felt like an eternally long night of tossing and turning – actually, no, more like waking up and wanting to toss and turn but being afraid to move and mess up the wires – they woke me up at some far-too early hour. We had a couple of hours before the first of my naps, so I headed to the kitchen to grab the breakfast I had packed. The place was a ghost town. This explained why the other patients had brought so little. They were simply there to sleep the night and head home – I was the only one who was continuing on with the MSLT.
For each nap, I was given 20 minutes to lay down in the dark and try to sleep. If I fell asleep, they would let me sleep for 15 then wake me up. The first nap felt like torture. I overthought what would be the most comfortable position to lay in, and was afraid to adjust myself because I was convinced that moving would raise my heart rate and make it take even longer to fall asleep. I was sure that I laid there awake for the full 20 minutes.
2 hours later, the second nap felt the same. They came in to ask me some post-nap questions:
Did you sleep? No, I don’t think I did.
Did you dream? …. wait. I did dream. But I really didn’t think I fell asleep.
I tried to explain that this happens sometimes, where I’m not asleep, but my brain starts to get really active and I start to have strange waking dreams. I felt so silly trying to explain myself.
Each of the 5 naps became progressively easier. I fell asleep. Then I fell asleep more quickly. By the final nap, I felt like I had immediately knocked out. When they came in to wake me, it felt like dragging myself up out of full unconsciousness, as if they had walked into my bedroom in the middle of the night and woken me up right in the middle of my deepest point of sleep.
Let me tell you. The worst part of everything? The part that sucked most about the entire sleep study? BEING WOKEN UP EVERY TIME YOU’VE JUST FALLEN ASLEEP. I just wanted to keep sleeping with every fiber of my being.
DONE. This is it, right?
At about 5 pm I finally left the sleep clinic – tacky with the glue that had stuck the wires to my body, my hair sticking out in random directions in sticky chunks, hoping that I had passed the test. Wondering how long until I would get my results – would I receive my diagnosis or would we have to start the whole process over again?
A year ago, I was hopeful that this sleep study was the end of my journey, the final step before treatment and getting a normal life. A week later, my doctor would call to tell me that I very obviously had narcolepsy and to talk over treatment options. Within a month I would be starting my first medication.
Looking back now, I know how foolish it was to think that I had almost reached the finish line, that getting this sleep study was going to solve everything. It was simply the beginning of a life long process of medication, management, and trial and error.
The 1 year anniversary of my sleep study feels both like something I should celebrate and something to ignore. It wasn’t the beginning of the end like I had hoped. It WAS a turning point, the key that unlocked the door to exploring treatment options, medication, and learning how to manage my chronic disease.