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.

Self Love Sunday

The “bikini body” workout and diet messages are revved up right now and ready to make you feel like shit. Four years into eating disorder recovery I still feel the tug of the media during the swim season and have to remind myself that my body is perfect exactly the way it is.

Dear Self,
Consider this one of many past and future reminders: your body is perfect exactly the way that it is. Every time that you sidestep the bullshit, bikini-body babble, you are able to be more present to your life. You let your amazing YOU become preoccupied with dancing in the rain, marvelling at the rainbow, and using your skills to solve the problems of the world instead of on calorie math. This is the way that I want life to be for you. On the days when you can battle the ED voices you are a rockstar warrior. And on the days where they get the best of you, you are still a rockstar warrior. No matter what happens, you are a rockstar warrior. And your body is perfect exactly the way it is.

(Via @nourishandeat on Instagram)

Eating and Bodies

Eating disorder recovery is one of the best and hardest things I’ve ever done.  Below are books, people, and other resources that I am committed to, through and through, in addition to those resources on the Mindfulness page.  None of these are meant to substitute for care from a licensed physician and/or therapist and for medication.

If you have resources you’d like to share, I’d love to hear about them in the comments below!


My favorite folks on insta:

  • @advancedstyle
  • @aerie
  • @allisonkimmey
  • @beatrixost
  • @bodyimagemovement (#ihaveembraced)
  • @bodyposipanda
  • @beautynotsize
  • @debrarapoport
  • @dothehotpants
  • @effyourbeautystandards
  • @fatwomenofcolor
  • @gabifresh (and #gabifreshxswimsuitsforall)
  • @glitterandlazers
  • @ihartericka
  • @isaacwest (and #differentmelanin)
  • @iskra
  • @mamacaxx
  • @nourishandeat (and #embracethesquish)
  • @positively.kate
  • @selfloveclubb
  • @sassy_latte
  • @sitting_pretty
  • @smartglamour (custom clothes from size XXS-6X!!!)
  • @stasiasavasuk
  • @stylelikeu
  • @swimsuitsforall
  • @theashleygraham
  • @yourstruelymelly (and #donthatetheshake)
  • See also Mental Health