My Very Sleepy, Not-So Immune System

10:54 PM

Kylo Rennnn!

Ladies and gentlemen, let me tell you the story of my life as a sleepy person.

Sleep and I have always been friends. As a kid, when left to my own devices, I would sleep as late as my body would allow. In high school, I developed two personalities - my normal one and my early morning bitchy make-people-cry personality. 

Endometriosis made me especially appreciate sleep, before I even knew I had this disease. During my period, it was the one and only place I didn't hurt, until a few years ago.


It's probably not surprising to most people that my sleep cycle went to shambles in college. Like most students, I stayed up very late, usually 1 a.m. or 2 a.m. on school nights and even later on weekends. I slept about five or six hours and spent the rest of the day cramming as much activity as possible into my awake hours.

But despite all that, I was functional. In my first year out of college, I was still functional. And then, right around the time I knew I was sick but didn't know I had endo, everything came to a screeching halt.

Sure, I expected my ability to survive on mere hours of rest to finally wear out. But I didn't expect to stumble through the middle of the day like a zombie. I didn't expect to sleep for eight, nine, ten hours and never feel rested. I definitely didn't expect to need a nap every day, fall asleep in social situations or skip out on events because I'm just way. too. tired.

Chronic pain and fatigue often go hand-in-hand. I knew that, and it makes sense. Your body spends all day fighting itself. So yeah, it's going to be exhausted at the end of the day.

But eventually, about three years ago, I got to the point where my life went like this: Wake up. Go to work. Come home from work. Nap. Wake up. Eat dinner. Nap. Wake up. Crawl into bed. Sleep. Repeat.

It wasn't a life. It was an existence ruled by pain and fatigue. I hardly had a life outside of it - just a hollowed-out husk, simply surviving.



Once I was diagnosed with endometriosis, had surgery, got my symptoms mostly under control and made some lifestyle changes, my pain improved and so did my fatigue. I thought I had my life back, and I was thrilled to no longer be ruled by a sleepy body.

That lasted for just a little while. And then, the pain crept back. And the fatigue.

And I noticed I needed to nap every day again. And I realized I had trouble remembering things. And I almost crashed my car because I fell asleep at the wheel.

I needed help. But overwhelmed by my other health needs, I put it off as long as I could. Instead, I supercharged my body on long, frequent road trips with caffeine, trail mix, loud music and everything in between. My husband could drive when we went somewhere together, but for my work trips, I was on my own. And I was too proud to call my boss and say, "Hi, I can't come to that event. I'm sleepy."



That "solution" wore off, too, eventually. Nothing worked anymore. 

And before you ask, "Did you try-?" YES. I tried everything! I woke up early. I woke up late. I went to bed early. I went to bed late. I ate more. I ate less. I worked out more. I worked out less. I drank more caffeine. I drank none (BAD! BOOOO!) 

I. tried. everything. And nothing changed.

I had to admit defeat, so I met up with my primary care practitioner. A blood test showed some slight vitamin deficiencies but nothing that could explain my all-encompassing sleepiness that was draining me in every way possible.

So she referred me for a sleep study.

(SPOILER ALERT: This blog post won't tell you the results of my study because I have no idea what they are yet. So if you're on the edge of your seat, anxious to know just how sleepy I am, you'll have to wait for the sequel.)

(You know. Just didn't want to disappoint you guys.)

So yeah, I first set up my consultation to determine whether I actually needed a sleep study, which I was pretty skeptical about. But I showed up early, as asked, which I thought was funny because uhh you're dealing with sleepy people.

If you're considering a sleep study, know this. YOU WILL HAVE MORE PAPERWORK THAN YOU EVER THOUGHT POSSIBLE OH MY GOD.



Don't go and tell me, "But Tracy, I had this one surgery/ER visit, and I had so much stuff to write out." NO. NO YOU DID NOT. YOU DID NOT HAVE SLEEP STUDY PAPERWORK.

Sleep study paperwork is like "Do you sleepwalk? Do you ever think about sleepwalking? Do you know what sleepwalking is? Have you ever met someone in your life who sleepwalks? If you could sleepwalk right now, where would you go? Seriously, that's it? You'd just go get pizza? Well, okay, I would have figured something more interesting than that, but hey, it's your sleepwalking..."

And as you fill out these pages, sleep techs will come by and take them out of your hands and bring them to your sleep doctor. And then they'll come back like "Did you fill out the 500 questions about dreams?" And you'll be like "NO, DAMMIT, I'M STILL ON CAT NAPS, GIVE ME A MINUTE, CHERYL."

Anyway, after my wrist fell off, I was escorted to the doctor's office. He reviewed my mountain of dead trees, and our conversation essentially went:

"Do you snore?"
No.
"Are you sure?"
Yes.
"...are you really sure?"
YES.
"Okay. You don't have sleep apnea. Maybe narcolepsy?"
K.
"You should have a sleep study."
Great.

(He was actually more helpful than that, but this story is getting long.)

If you're not familiar with narcolepsy, it's when your brain can't adequately process sleep-wake cycles. So as a result, you have excessive daytime sleepiness and uncontrollable episodes of falling asleep in the day.

I chatted with a close friend who has narcolepsy about the condition, completely sure I didn't have it. I mean, I don't have sudden, overwhelming sleep attacks, in which I'm making breakfast and then all of the sudden on the floor. 



But my friend doesn't either. What I learned is that sleep disorders, like narcolepsy, are a spectrum. Some people do have very serious and scary sleep attacks, in which they don't remember falling asleep. Other people, probably like me, are just really, really tired all the time.

I also learned that narcolepsy is sometimes thought of as an autoimmune disorder, like endometriosis often is. That was a lightbulb moment for me. Once you have one autoimmune disease, you tend to have, like, twenty. So maybe narcolepsy was a reasonable diagnosis, even though I hesitated to clear the sleep medicine office to pass along the sleep study to my insurance company.

But I was desperate. I was getting more and more tired, and I needed answers.

So two days before my wedding anniversary, I packed up a random assortment of things I need to be a Tracy into my college backpack and got ready for my sleep study.

Here is my "first day of school" photo:

Note the sad dog in the window...
My sleep study would involve sleeping a night at the office and then a narcolepsy study the entire day following. 

I showed up, had an hour or two to myself and then, I was hooked up to a billion sensors and plugs and whatever else you call those things. There were a ton stuck to my head, which meant my hair was full of this sticky, white goop for an entire night, morning and afternoon. There were four on my legs, to monitor kicking, and two on my chest, to monitor my heart. Belts were wrapped around my chest and stomach to track breathing, and the worst were a few stuck to my chin to see what my mouth does while I sleep. I also had tubes up my nose. I was very pretty.

Perhaps unsurprisingly, I slept terribly that night. I usually do when I'm in hotels or somewhere I don't usually sleep, but I slept really badly. In fact, I'm pretty sure I got four hours of sleep, tops. At 5:30 a.m., the sleep techs who could listen to and see everything I was doing in my windowless room (creeeepy) woke me up.

Between that and the fact I wasn't wedged between my unmoving log of a sleeping husband and a 15-lb. dog who somehow takes up half the bed, I was already unsure how well this would assess my "normal" sleep. Nothing about that night was normal. 

But this was just the beginning of my study. The next part is what I later described as "a special kind of torture."

I can't function without my morning routine: breakfast, coffee, shower. If I'm missing one of those things, I'm in disarray - completely uncomfortable, cranky and just unpleasant to be around.

Guess who didn't get two of those three essential things. Yep.


I figured I wouldn't get coffee, since that's pretty much cheating on your sleep study. But I couldn't shower, and I had goop all over my face and hair that kept the sensors attached to me. I could feel my face breaking out underneath layers of that stuff. I wanted to pull out the hair that was sticking to every part of my face and tangling with wires in every direction. Just thinking about this still makes me cringe. Why didn't I wait to grow out my pixie cut?! How did I survive three days of Bonnaroo?!

Anyway.

To assess narcolepsy, I had to take 15-20 minute naps every two hours. In those two hours, I could not fall asleep, or my goopy hair would be for naught. So I sat in an uncomfortable chair and tried to read Harry Potter, but that quickly made me drowsy. I pulled out my journal and started to write, until my penmanship looked like my American History 101 notes from falling-asleep-in-class Tracy.

I was reduced to watching the tiny TV in my room. And guys. Don't cry for me, because it already happened. But there was NO HGTV or Food Network.


I had about ten channels to choose from, all of them with the worst of morning TV. Like, worse than what I remember watching on my rare sick days from school. The best thing I watched all morning was Arthur (awww yeah) and in between whatever Good Morning America or Dr. Phil were going on about, I played on my phone and whined about how terrible sleep study life is. I couldn't call anyone because the sleep techs would hear my entire phone conversation, so I let Twitter hear my complaints.

As far as the sporadic torture naps went, I fell asleep in (I think) half of them. Maybe less. Definitely the first two. I know that being able to fall asleep at the drop of hat, which I've always bragged about being able to do, is a narcolepsy symptom. But it depends on whether or not your body enters REM sleep, which I'm not entirely sure I did.

At 1 p.m., I got Jimmy Johns. This is important to mention because I love JJ's.

This nap cycle went on until about 4 or 5 p.m. when the sleep study finally concluded. I was so desperate to be clean that as soon as all the sensors were untangled from my hair and body, I jumped into the tiny shower in my room with terrible water pressure and managed to bathe myself. I thanked my sleep techs and practically pranced out the door with joy.

My head had been pounding since 2 p.m. from lack of coffee. I only drink one cup a day, but as I said, it's my life fluid, and I don't understand people (i.e. my husband) who can live without it. And thank God Starbucks was across the street because I probably would have caused a state of emergency for my city, trying to get to the nearest source of caffeine.

"Yes, girl, you deserve me."

You'd think that taking a day off and spending the entire time sleeping would be a great experience, but NO. IT'S NOT. I HAD THIS DREAM AND I'M HERE TO SAY GET A NEW DREAM.

It's hard to say right now whether or not this bizarre episode in my health history was worth it, since I don't have my test results. But whatever they say, I'm happy to have at least eliminated a few things. While I'm still not sure I have a sleep disorder (maybe just chronic fatigue), I can at least move on to the next chapter of getting myself the help I need.

This is certainly the "dumbest" thing that's ever happened to my health (and I was run over by a car I was already in once... great story for another time.) I feel kind of stupid being like "What's wrong with me? Oh, I'm juss sleepy sometimes, that's all..."

But I know this is related to my pain and affects my overall health. And I know it's just yet another thing to add to my unending list of health-related issues and obligations. It's frustrating because sleep has always been a refuge to me. And now that I hurt while I sleep and can't even sleep properly, it's been a tough thing to deal with.

It's like "Oh, okay. I can't even have that one thing that my body was doing right. THANKS."

So I will hopefully have the results soon. And I will update with a much shorter blog post.

If you have endo or a similar condition and a sleep disorder, I would LOVE to talk to you about it. Please comment here or on my Facebook page.

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