Food and Narcolepsy

Julie Flygare is my #womancrushwednesday! Check out her episode on the @arinuplifted podcast where she talks all about…NARCOLEPSY…here!

(Photo via @remrunner.)

Trigger warning: eating disorders. With a heaping side of bitterness.

It took me a while to process this interview because it’s heavy on the food and exercise talk. You see, food and I have a thing. And Julie does a great job countering the idea that food and exercise could play any role in reversing narcolepsy. *standing ovation*

Narcolepsy is a neurological disease caused by a lack of cells in the brain that release the neuropeptide orexin/hypocretin. These cells are suspected to ether be missing from birth or to be killed in an autoimmune process.

While I was having symptoms as early as 8 years old, I wasn’t diagnosed until 20 years later. My whole life I thought that I had a behavioral disorder; I thought that I was lacking willpower and motivation, that I was “floppy” because I had no self control, and that my eyes were burning because I had the “declining vision of an 80 year old” (actual comment from an eye doctor). I spent years trying to manage my mysterious symptoms through diet and exercise before my diagnosis. Despite already being in peak physical condition as a college athlete, I thought that I could – and SHOULD – do more. After all, I was being tested up one side and down the other and everything came back negative. Therefore, I was perfectly healthy and was bringing this all on myself.

It won’t take a genius to figure out where this is going. Headlong into an eating disorder. Yes. I eliminated all foods that I could link to my symptoms, until I was eating chicken, avocado, and frozen broccoli for three meals a day, every day. Being in social situations became impossible and I was still sleeping under my desk at grad school.

Only after fighting back from a rampant eating disorder can I say that at the height of my autoimmune paleo protocol neuroses and physical strength was I still experiencing daily symptoms of cataplexy and excessive sleepiness. Like most humans, I feel better when I’m eating real food than when I’m eating crap for every meal. But no amount of gluten-free, dairy-free, nut-free, nightshade-free nonsense is going to cure my neurological disorder. Going back to my #wcw, it was so incredibly healing to listen to someone I admire and respect say those words. Thank you, Julie!

I absolutely agree that restrictive diets can be beneficial for many people. For me it was mentally and physically unhealthy and I’m grateful to be out the other side of that dark time.

Xyrem Vol. 2

There are so many narcolepsy blogs and vlogs where people track their Xyrem experience and I’m starting to understand why they all start out with such vim and vigor and trail off after a few months: it’s because the person is waking up and living life! Instead of sleeping all day and blogging/vlogging in between, we’re awake and alive with a few naps here and there.

This drug has completely changed my life. I’ve done more in the past 3 months than I’ve done in the past 5 years.¬† And now that Xyrem is working and I have hours on end of wakefulness, I’m neglecting curioussparkledirt ūüė≥ to RUN THE FASHION BRAND I STARTED 2 MONTHS AGO?! How is that even a thing?! I ACTUALLY launched a fashion brand – http://www.sleepandsparkle.com – two weeks ago, after coming up with the idea for wire-framed headscarves two weeks into Xyrem treatment. This is where I have to stop thinking and keep doing because the sadness of 20 years of misdiagnosis is enough to drown me.¬† Being awake is NOT overrated.

IMG_9075

How has Xyrem helped me?

I have fewer dreams and hallucinations, and fewer intrusive REM cycles during the day. This is big for me because my dreams, nightmares, and hallucinations are horribly disruptive and emotionally exhausting/debilitating/scarring. I still dream but they slip away when I wake up, rather than lodging themselves in my memory as experiences.

I transition more easily between tasks because I’m not doing the thing that is just the easiest to do deliriously tired. ¬†I can reflect, critically analyze, and switch to the highest impact task when necessary. ¬†And if I can’t make it all the way through that chain, I’ll nap after I realize what I need to do and before I make the switch. ¬†This is helpful for EVERYTHING.

Where is there room for improvement?

Things aren’t 100%. ¬†I sleep 1-3 times per day for an hour or more, I still have hella cataplexy attacks, and I still can’t read for more than a few minutes without my eyes burning. ¬†Cataplexy isn’t supposed to start getting better until I’m at about 3grams x 2 so I’m not worried about that.

I think that a lot of dissatisfaction comes from an understanding of where I will be after a year or two on Xyrem and being frustrated that I’m not already there yet #chronicillnessfirstworldproblems. ¬†Because the truth is that my worst day on Xyrem is still 74 times better than my best day jacked up on stimulants. ¬†I’m just realizing how sick I was.

And having a diagnosis?

IS FREAKING AMAZING! ¬†But some friends and family have asked me if I’ve gotten worse in the past couple of months and here’s what I think is going on: I LOOK worse because the diagnosis empowered me to set boundaries. I take naps when I need them whereas before my diagnosis I would just zombie through life on stimulants without naps and then crash for a week.¬†¬†I looked more functional because I was going through the motions of life, even though nobody knew that I was just a shell. ¬†Now instead of forcing myself to stay awake by binge eating or binge watching Netflix, I recognize those behaviors as signs of exhaustion and take a nap. ¬†This is a big part of learning to listen to and trust my body.

Last night on Xyrem

Last night I increased my Xyrem dose to 2.5g x 2 from 2.25g x 2.

7pm Done with food for the night.

10pm¬†2.5 grams of Xyrem down the hatch. Let me just say that 2.5g is where the taste went from “ugh this is salty ocean water” to “holy shit I am actually drinking a dissolved block of salt”. It’s INTENSE, but it doesn’t really matter. If I had to let a raccoon poop in my mouth twice a night to get my Xyrem I would still do it. Being awake is that good.

11pm¬†I was on my phone for an hour or so and started feeling high much more quickly than previous doses. I got a small headache around 11 and then let myself go to sleep. ¬†Real talk: my sleep hygiene has gotten a lot worse since starting Xyrem because I rely on it to put me to sleep. ¬†You don’t have to do that and good sleep hygiene won’t hurt.

1:30am Wake up naturally, go to bathroom, get back in bed, take second dose.

4:45am Wake up with the sunrise, FEELING awake and alert, and then look at clock and realize that it’s 4:45. I’ve never seen 4:45 as an awake person in my whole life.

4:45-6:45am On Shopify working on http://www.sleepandsparkle.com. It wasn’t that drugged wakefulness where you kind of engage with your phone and then wake up an hour later drooling and your phone dropped out of your hands because you fell back asleep. I was AWAKE. I had no idea what to do with myself. This is different from 2.25×2 so we’ll see if it lasts and how it changes over the next week.

6:45-9:45am Ate breakfast, made some scarves, and did a sleep&sparkle photo shoot.  I started feeling sleepy around 9:45 so I took 125mg of Nuvigil and slept til 11:30.

The Misty Bear and Nimbus Lifestyle Hostel for People Who Have Morning Hands and Other People Who Have Weird Things Too

Happy Sleepy Saturday.  Today I have an exciting announcement!

The community you’ve been dreaming about is finally here.

I’m thrilled to announce that Misty Bear, Nimbus and I are expanding our¬†lifestyle hostel!

  • Are you jealous of your cat?
  • Do you wish you could sleep whenever and wherever you want without feeling shame and guilt?
  • Do you want to NOT have to keep reminding yourself that sleepiness is NOT laziness?
  • Do you want those gold stars you deserve for getting into the shower? For feeding yourself? For answering the phone and¬†managing your doctor appointments? #boringselfcare
  • Do you collapse spontaneously or lose muscle control with little warning?
  • Do you see things that no one else sees? Or experience your bed falling when everyone around you tells you that didn’t happen?
  • Also we have animals.

If you answered yes to one or more of these questions then The Misty Bear and Nimbus Lifestyle Hostel for People Who Have Morning Hands and Other People Who Have Weird Things Too could be right FOR YOU!


Here at the MB&NLH4PWHMH&OPWHWT2 we live according to our bothersome medication schedules, high-maintenance self-care routines, and wonky circadian rhythms in the guilt- and shame-free environment we’ve always craved. ¬†The MB&NLH4PWHMH&OPWHWT2 is a safe, judgment-free zone, for all those managing¬†diagnosed and undiagnosed chronic illness, sleep disorders, and mental illness.


Simply post photos of your self care routine using #MB&NLH4PWHMH&OPWHWT2 to win a free night stay!  All entries must be submitted to Misty Bear and Nimbus by this coming Saturday, June 10 to be considered.

What people are saying about us:

“It exceeded at least 7 out of 10 of my expectations.” -Anon

“People here are SO like me. ¬†It’s kind of disruptive.” -Anon

“Everyone pays their dues. ¬†Sometimes that’s not enough.” -Anon

“There are a lot of people here like me. ¬†So if you’re not like me we could really use a hand.” -Anon

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? ūüĎČūüŹľIt’s okay to not be okay.ūüĎąūüŹľ

Love,
The #narcolepsyprincess