Narcolepsy Product Guide

Narcolepsy, chronic illness, and mental illness suck.  Below are some of the things that make my life easier, better, and more comfortable.  These are great for narcolepsy/cataplexy and maybe good for other chronic illnesses, too?  Comment below with your favorite products that we need to know about to live a more full life while battling our demons.  Unfortunately I don’t receive kickbacks from any of these companies so I won’t have financial freedom when they change your life, but maybe one day when my blog is YUGE…

Let’s start with the basics

Rice Socks

Raise your hand if your eyes start burning shortly after you wake up.  And then for the rest of the day.  Mmhmm.  And your grad student friends look at you kinda weird when you ask them how they keep working on data when their eyes are bleeding and they’re kinda like “ummm…huh?”

So I definitely don’t know how to solve this problem, though I’m hoping that it goes away like everything else as I continue to increase my Xyrem.  In the meantime, let me tell you what the Eye Clinic told me when I was complaining of declining vision and they couldn’t find anything wrong with me: a warm compress.  Again – it doesn’t solve the problem, but absolutely brings me some relief.

Fill an old, soft, odd sock with a few cups of white rice.  Preferably a sock that isn’t too hole-y.  (If you are reading this and you have narcolepsy, I am assuming that you don’t have your shit together enough to have gotten rid of your old socks.  I dare you to tell me I’m wrong or, if you’re odd socks are gone, that you had anything to do with it.)  Microwave that sucker for 30 seconds (put a cup of water in the microwave for moisture) and than go take your nap with that on your eyes.

Note: the standard tricks for relieving eye fatigue DO NOT WORK FOR ME.  Remember that if you have narcolepsy you are sleep deprived which is totally different from having fatigued eyes.  For years I’ve tried to do the “look away from the screen, etc” and I get so frustrated and feel like a shitty student/human because I still need to sleep and I still feel like a demon with daggers is standing on the inside of my skull trying to push my eyes out of my head.  If anything, stopping to look away from the screen makes going back to doing work more difficult because I’m tuned in to the pain.  Know that if this is you, you’re not doing anything wrong.  You’re just doing everything sleep deprived.  I’m sending you a sock filled with rice-y love.

Water bottles

I have morning hands.  I get them in the morning regardless of what I’m feeling and then throughout the day. #cataplexy

The Camelbak Eddy is my answer to this.  It is a socially acceptable, adult, sippy cup that I can put on the table and drink from without my hands ever getting involved.  I used to buy cute water bottles that had screw caps and I would drop them and spill everywhere and it was a mess.  Over the years I gravitated towards more assistance but never understood why.  It’s because freakin’ morning hands!  One thing you can do is attach a carabiner to the hook on the lid and secure it to your bag, or to your jeans, or to wherever makes sense so that your hands can be involved as little as possible.  Downside of this bottle is that the bitevalve can get DISGUSTING.  I recommend buying extra bite valves on Amazon with your purchase because you know you’re not going to follow up on that for months. You’ll just drink from a disgusting water bottle. And that’s fine.  I’m not going to judge you and you won’t judge me.  Cool.

The downside of the Camelback Eddy is that it’s heavy and you have to carry it around even after you’ve finished drinking.  I was recently introduced to the Platypus water bottle bladders and holy smokes they’re amazing!  You can get a 1 liter bag, fill it up, stuff it in your purse, and lose weight as you drink.  It’s perfect.  I have not had one explode in my purse after using it for 3 months.

I use my Camelback around the house, and anywhere that I can set it down on a surface.  I use the Platypus when I’m adventuring around a city and don’t want  a ton of weight in my purse but need a ton of water.

Phone Cases

Which brings us to the LifeProof case!  I don’t actually have one of these right now but as I write about morning hands, and as I recently dropped my phone and broke the screen, it’s seeming like a good idea.  PLUS, it makes the Platypus water bladder a less risky gamble.  Boom. Done.

Sleep Game

Part of narcolepsy is having dreams and nightmares so vivid that they become memories.  Because of this, nighttime sleep never felt safe for me so I have a super tricked out bed game that makes sleeping a safer space.  These are my talisman so that I don’t have to fight off the demons on my own.  Yes I made my own dreamcatcher and if your nightmares become too much you can rock it Flava Flav style.  I’m pretty sure I read somewhere that this trend is IN this summer.  There’s a 90% chance that was a hallucination.

For travel:

Ear plugs

Is anyone else here super sensitive to noises?  Like you become full of irrational rage?  I know that this is an actual disorder and I’m not sure that I have that but I THINK – but am not sure – that my rage might be correlated with my level of sleep deprivation.  I take ear plugs, headphones, and charged electronics on all flights and to all public places so that I do not have to listen to the sounds of people eating, snoring, swallowing, and living.  It’s hella frustrating when this person is my husband because I love spending time with him and it’s not his fault he needed a drink of water.  And even worse when this person is myself.  True story: I had to stop eating leftover birthday cake last week because the sound of myself chewing and the fork on the plate almost made me start crying.  #sleepdeprivation

Inflatable airplane pillow/neck brace

Flying triggers cataplexy for me.  You don’t read that on WebMD *rolls eyes because the internet about narcolepsy kinda stinks* and I definitely thought it was something that everyone experienced until I read Chica Siesta’s blog post and realized that it was freakin’ cataplexy! (You guys when my neurologist explained cataplexy to me in our first appointment I was 100% sure I didn’t have it.  Not until weeks later and lots of talking to people did I realize that it wasn’t normal to a) have morning hands and b) lose all muscle control and collapse into a heap on the floor at random times, all while maintaining consciousness.)

I read Elaine’s post while we were planning our honeymoon to New Zealand, immediately recognized my symptoms, and declared to my husband that I needed a neck brace for our trip.  After working hard to not look at me like I was crazy, he found this inflatable airplane pillow/neck brace on Amazon that exactly fit the bill.  Yes he searches for things on the internet for me because I can’t read.  See “burning eyes&rice sock” above.

Travel Naps

Raise your hand if you hate sitting in chairs.  Cool, me too.  It’s exhausting.  I like to be as close to the floor at all times in the event of a cataplexy attack.  We have these super fancy pants pocket size chairs from REI and I can’t use them.  Speaking of which we need to return mine.  Chairs are the worst.  So when we were packing for NZ I was like “no I don’t want to take a chair.  I want a picnic blanket that’s waterproof and easy to fold up so that I can sleep when you want to go on a run.”  Cue D going to Amazon and finding the COSY MEADOW which is EXACTLY a picnic blanket that’s waterproof and easy to fold up so that I can sleep when he wants to go on a run!  (Thank you, Darrell.)  This was the MVP of our trip and continues to be one of my most favorite discoveries post-diagnosis.  I willfully ignore the fact that some people are awake enough to use this to go to music festivals, as advertised.  Because you know where I used it?  On the beach in Abel Tasman park at 10am in the morning 6 minutes after we got off a water taxi to go on a legendary hike.  Have I said “FUCK NARCOLEPSY” during this post yet? Because FUCK NARCOLEPSY.

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For style:

Nickel & Suede leather earrings: I wore these earrings on an overnight flight to New Zealand like it was nothing. Yes I have other earrings but these are like the pajama’s of earrings.  You’ll look like a million bucks.  A sleepy a million bucks.  But you get the idea.

Red lipstick: You absolutely do not have to wear makeup, lipstick, or anything else to be beautiful and awake.  For me, red lipstick has become a ritual that tells my brain “we’re doing life today, suck it up.”  Of course that does not work because I have a neurological disease and my brain will do whatever it wants, but I find comfort in routine.  I also find that fewer people say “you look sick”, “did you sleep last night?”, and other ridiculous things that distract me from whatever meaningful thing I’m trying to do.  So I’ve come to the conclusion that it makes me look less sleepy and more alive.  I should say that it took a long time and buying all of the colors of cheap wet ‘n wild lipsticks before I found my red!  Now I wear Liya’s Red and I love it.  Thank you, Stasia, for teaching me the power of a good red!

 

Do any of these things fit into your life?  What am I missing (aside from a doctor who gets you and meds that don’t have horrible side effects)?  Please please please share your favorite products in the comments below!

Xoxo,

The #narcolepsyprincess

It’s okay to not be okay

I don’t look this cute right now and I’m not smiling because I’m frustrated with my body for not letting me to do what I want to do.


So why am I posting this photo? I’m trying to channel this girl’s happiness, self acceptance, and peace with her diagnosis. The girl in this photo is empowered to take care of herself and to listen to her body to do what she needs to do to keep it happy.

But today I’m not thinking about my body, I’m thinking about me. I have about 70 blog post drafts in my WordPress queue with words I’ve spent time crafting into sentences about ways to be stylish AND chronically ill and how to alter a skirt in less than 10 minutes and things I’ve DONE and things I’m DOING. But SLEEP. And fuckin cataplexy.

I hate not having control over my body. I hate that it gets in the way of doing the things I want to do. I hate that I have to think about it before I think about myself. And that’s what it means to me to be a #spoonie. It means that I’m always taking care of myself AND my body. We aren’t one. We’re an adult (me) and a tyrannical two year old (my body) whose demands always come first.

Today I’m sleepy. Today I’m trying to be okay with not meeting my goals. Today I’m trying to accept my body as part of me. And today I’m not going to beat myself up if none of that feels okay. Because I don’t even recognize the girl in this picture and ya know what? 👉🏼It’s okay to not be okay.👈🏼

Love,
The #narcolepsyprincess

Mental Health Awareness Tips

May is Mental Health Awareness Month and below is my number one tip for being helpful if your friend opens up to you about something:

After showing your concern, ask your friend what their experience of whatever the label is that they tell you about.

The people who know me and have seen my life eaten away by my sleep disorder become curious when I tell them and ask “woah so what IS narcolepsy?”

When I tell people who haven’t seen the full impact of the disease on my life and/or haven’t read the blog they say “oh that’s so nice that you nap and then you feel rested.”


Nobody I’ve met (who didn’t already know someone with narcolepsy) knew that narcolepsy was chronic debilitating sleep deprivation coupled with random collapses and disruptive hallucinations. Including me, and 20 years worth of doctors.

I hope that as we go into the last week of Mental Health Awareness Month, more people get curious and ask/listen about each other’s experiences. 

Doing this will make your friend feel heard and valued, which is what a lot of people with chronic illness and mental illness are seeking. In addition, you listening could help decrease time until diagnosis, particularly for rare diseases like narcolepsy. If everyone I know learns a little bit more about what narcolepsy ACTUALLY is, the next time their friend complains of similar symptoms they can say “hey, this might be crazy, but have you thought about seeing a sleep neurologist?”

Find my sleep disorder posts here.

People battling narcolepsy, other chronic illnesses, and mental illness: what tips would you give?

Love,

The #narcolepsyprincess 

Xyrem Vol. 1

Let’s talk about my first week on Xyrem.  The cliff notes version is that I LOVE THIS DRUG. I think it’s absolutely amazing and I hope that everyone who is interested in it can have access to it. I have a long way to go in my Xyrem journey but after two weeks there is a notable difference in my sleep quality, which is exactly what Xyrem is meant to manipulate.

My puffy, sleepy, super-excited face on the morning that I’m going to pick up my first Xyrem shipment!

For those of you who are unfamiliar and thinking “WTF is Xyrem?”, let me refer you to Chica Siesta who does a brilliant 4-1-1 in her post All About Xyrem, the Weirdest Drug Ever.

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Kitten-in-a-donut commercial break while you read about Xyrem.
Cool. Now that you know all about Xyrem, I’ll give you a blow-by-blow about my first week drinking super concentrated sea water.

Day 0: Pickin up Xyrem!

We got back from NOLA, I took a yoga class/guided nap, and then I picked up my first Xyrem shipment.  My anxiety level was at 1000.  What is it going to feel like? What is it going to taste like? Am I going to have insane side effects? What is it going to be like to wake up in the middle of the night for the second dose? Am I going to feel totally drugged in the morning? Am I going to stop breathing?  I cried, I was so scared.  I’d say it was kind of pathetic but I’d be selling myself short.  The decision to take Xyrem is a life-changing one.  Xyrem is THE DRUG and at this point all of my eggs were/are in the Xyrem basket; if it doesn’t work out, there’s nowhere else for me to go except back to the drugs that I use to make me look awake.

My first night on xyrem went like this:

  1. Finish eating two hours before Xyrem time.  For me this was 8pm, for a bed time of 10-10:30pm.
  2. Set all the alarms.  My husband and I both set alarms for 2:30.
  3. Prep two Xyrem doses.  I’m starting low, with each dose being 1.25grams.
  4. Get in bed with stuffed animals. I have a tricked out bed game – stuffed animals, blankies, more pillows than my husband can deal with. I mean, the least I can do is make sure I wake up to a friendly face when I’m coming out of the hallucinations following my 10am sleep attack, yeah? Friend who messaged me: yes I have sleep attacks at 10am (and 2pm and sometimes 7pm on a really bad day) too! So I also don’t plan things before 12. Or ever. I know you know what I mean. ❤ 
  5. Drink the ocean.  It’s disgusting.  At only 1.25 grams it tastes like I’m drinking super concentrated ramen broth, but not in a good way.
  6. Wait to fall asleep.  I was expecting to fall asleep in 5-15 minutes like all of the nurses and pharmacists and videos and literature had prepped me for, but it ended up being an hour before I fell asleep.  Half an hour in I got really giggly.  And 15 minutes later I could feel a really comfortable weight pushing down on my body and I knew that I was going to go to sleep!

I woke up easily to my alarm at 2:30 and took the second dose.  (My husband woke up too.)

Day 1

After my first night on Xyrem, I woke up naturally at 6am!  I woke up without feeling drugged for maybe the first time in my life.  It was WILD and so disorienting in the best way.  I took my nuvigil and then slept on and off for another five hours before going to a yoga class/guided nap.

Via the fantastic @falling_asleep_elle on Instagram.

That night I took my first Xyrem dose at 10:30 pm and woke up at 2:20 for dose 2.  (My husband woke up, too.)

Day 2: Sleep Attack

This is my second day on Xyrem.  I woke up naturally at 6 again and fed the bears while my husband slept.  I stayed awake until my 10am sleep attack – a pretty consistent event.  I can push through my sleep attacks on stimulants but I’m a zombie.  Upon waking, I went to the gym to walk on the treadmill. I’m trying to be consistent about going to the gym even if it’s to walk on the treadmill. There is some potentially ugly anxiety, depression, and panic attacks waiting for me down the Xyrem road and I’m trying to shore up some healthy habits now.

I took my Xyrem closer to 11 on the third night.

Day 3: The Pstupid Psychiatrist

I woke up naturally at 6am again, fed the bears, and then this happened.  I had enough wakefulness to go to the gym to run it off.

I am trying to become independent of my husband for waking up for dose 2 so that he can sleep and we’re not trading my sleep disorder for a new sleep disorder in him.  I didn’t want him to set an alarm on Day 4 so that I could try to wake up by myself.  That night I took Xyrem at 10:40 and stayed up on my phone for an hour while I waited to fall asleep.  In some ways I think my sleep hygiene has gotten worse this week: since I’m relying heavily on Xyrem to put me to sleep, I’m more liberal with nighttime tech usage than I was before Xyrem.  I checked the clock and realized that I was still awake at 12 which was kind of weird.  I put the tech away and tried to fall asleep.

Unfortunately I snoozed my alarm clock when it went off.  My husband woke me up and I was disoriented.  I took the meds and then conked out again until 6am.

Day 4: A Kittyplexy Attack

I woke up at 6am, fed the bears and went back to sleep.  I went to the gym for an intense workout in the afternoon and 25 minutes in I felt a full body cataplexy attack coming on.  I lay down on a mat for a 15 minute nap and was surprised to find that it was more of a kittyplexy attack.  Yes, that is what I am going to call a half-cataplexy attack. Pretty cute, right?  I started losing control but didn’t lose ALL control.  Kind of like being pushed all the way up to the cliff but not pushed over it.  Amazing.  Is this Xyrem?  I don’t know but I’ll take it.

My eating is weird on Xyrem.  I came home from the gym and ate a pack of electrolyte gels + a chewy bar because I didn’t have any energy to make anything else. Napped from 330-430. Went mountain biking at 5 which was a silly call because I crashed.  My eyes weren’t doing great and my arms were morning-hands esque.  In retrospect I think I needed potassium. I’ll have to be more vigilant about balancing my electrolytes as my sodium intake increases – a common Xyrem thing.  We went to one of our favorite restaurants after the ride and I was STARVING.  I was so excited to be hungry and I ate half a chicken which I think is more protein in one sitting than I’ve eaten like ever.  It was PERFECT.


I stopped eating at 8pm, brushed teeth, and set up my Xyrem, etc. First dose at 1050. Cell phone alarm set for 240,250,3. Vibrating alarm set for 230 and 630.

Day 5: My Favorite Day with Xyrem

The vibrating alarm woke me up at 230. I was a little disoriented, but okay.  My husband said he still woke up 😦 and then I woke up at 430 which was weird. But I must have conked out again until 645 when I woke up feeling pretty great.

I totally get why everyone is obsessed with Xyrem and why folks put up with the associated side effects and lifestyle changes: my sleep is AMAZING.  I’ve never woken up feeling refreshed before and I didn’t even know what I was missing out on!  I knew that I woke up feeling drugged.  I knew that my husband can look in my eyes and tell whether I’m sleeping or not while we’re talking in the morning.  BUT I just thought that’s what waking up felt like and that he was less lazy than I was.  Turns out THAT’S NOT WHAT WAKING UP SHOULD FEEL LIKE.  (People without narcolepsy: every morning I wake up feeling like you would if you drank like 10 margaritas the night before, except that I don’t drink because it makes my symptoms eleventy-thousand-quadzillion times worse.  Yes that’s a number because I just hallucinated it to be true.  And yes I’m making a guess at the number of margaritas because I have absolutely no idea what it’s like to not have narcolepsy.)

I feel amazing.  Xyrem is the best drug in the whole entire world.
At 830 we went to the Farmer’s Market! I was feeling sore from the mountain biking wreck but less so than I would before Xyrem. That could be totally psychosomatic and I’m okay with that.  The sleep I’m getting now is 100% real, though, and I never want to go back to the pre-Xyrem days.
We got our food and that’s when I started feeling BLAH.  My head felt awake but my body felt HEAVY. Like we-had-to-sit-down-on-the-curb-at-the-market-because-gravity-was-too-aggressive type of heavy.  This is not a normal sensation for me and it felt like I was wading through a pool with a weighted-vest on.  Like HEAVY.  I’ve seen people write about this sensation and it didn’t make any sense to me.  Until Day 5 when it was just undeniably there.  Almost like cataplexy-heavy but without the tingling discomfort and loss of muscle control.

 D reminded me that “just because you feel great now, you might still need a nap later.” You guys, this is my person.  I’m healing from the trauma of 20 years of doctors telling me I’m wrong and subsequently trying to hide my sleepiness from the world, so I need permission to be sick and sleepy, and he knows that.

Getting ready to nap with Nimbus.

Also I didn’t take Nuvigil. I felt medicated anxiety yesterday so I skipped it today. I had it with me in case I need it, though.

After my nap I went to my very first ever writing class! More on that later.

Check out my Instagram post (@curioussparkledirt) where I write about the mind-boggling desire to use my time to cook. A pre-xyrem “never”.
Days 6 and 7
The sleepiest days. But I also didn’t take Nuvigil AND it definitely was NOT worse than my everyday narcolepsy experience pre-xyrem.
Week 2

I didn’t take Nuvigil Monday through Thursday and managed to get out of bed every single day to do something productive! (My husband pointed out that pre-Xyrem it was inconceivable that I could be a human without stimulants. We both got giddy with excitement about this progress. It’s SO helpful to me to have this outside feedback because I beat myself up a couple of the days for taking so many naps and he’s all “why do you beat yourself up you’re doing great!”)

Via Julie Flygare (@remrunner) and Project Sleep on Instagram.

I took Nuvigil on Friday because I was substitute teaching and that made sense for me. And then I stayed awake through my entire first dose of xyrem which is wild. I don’t know if it was the stimulants, or my body finally adjusting to such a low dose, or the really late nap I took, or all of the above, or none of the above. But I conked out after the second dose, woke up 4 hours later, and was SO awake. My husband pointed out that the 4 hours of xyrem sleep that I got was still probably more restorative than any 12-17 hour sleep period pre-xyrem and based on how I felt I would have to agree.

Starting week 3

Xyrem is still my most favorite drug ever. I understand the heaviness that people report feeling in their bodies with it. But I hear that goes away and it’s such a small thing compared to sleeping through the night for the first time in my life.

Sleep Awareness Saturday

HAPPY CATURDAY! You guys this is my first ever BIRTHDAY month with a narcolepsy diagnosis and treatment plan – sorry not sorry to brag *pops collar* – and to celebrate I’d like to welcome you to the very first #sleepawarenesssaturday! This is where I repost things I found on the internet, hold your face tenderly in my hands, and say lovingly “my dear, you might have a sleep disorder if…you experience this even after sleeping an average of at least 6 hours each night.” Or you might just be a perfectly healthy cat.


I do this because I love you and I have a “person-with-sleep-disorder-wants-to-save-you” complex and it should henceforth be known that I am desperately trying to make the world a more well-rested place. So let’s get started! Today’s #sleepawarenesssaturday is brought to you by an illustration from @bustle and @aus10cour:


I take issue with this illustration because it perpetuates the idea that waking up from a nap totally disoriented is something that a normal, healthy person experiences. A person with a healthy sleep structure only feels this level of disorientation if they are interrupted during a REM sleep cycle, which occurs after approximately 45 minutes of sleep.

So my dear, you might have a sleep disorder if you regularly wake up this disoriented from a nap of less than 45 minutes after sleeping 6-9 hours every night. This isn’t normal, despite pop culture telling you so. There are lots of different types of sleep disorders and I encourage you to talk to your primary care physician if a) you do not feel rested when you wake up in the morning, b) you have difficulty maintaining wakefulness throughout the day, c) you are easily disoriented when going in and out of sleep and d) one or more of a, b, c bothers you.

You can find sleep disorder resources, primarily narcolepsy, here. But there are also links to websites that are more broadly sleep disorder related.

I’d love to hear your thoughts in the comments below.

Love,

Misty Bear, Nimbus, and the Narcolepsy Princess

Edited to add:

This here is a good, short article on sleep inertia and avoiding sleep inertia. The key thing I want to add is that sleep disorders cause sleep deprivation even if you are “sleeping.” So if you are doing everything “right” and still experiencing sleep inertia, it is worth getting checked out.