Community and Connection in Chronic Illness

Happy Tuesday, friends! I’m trying to get into a Tuesday/Thursday/Saturday publishing cycle, instead of posting at random times throughout the week. This is the second post in that effort.


Do you have your people? The ones who help you reset and keep things in perspective? Over the weekend I went to my first narcolepsy support group meeting since moving to CT and it gave me a renewed sense of hope and community.  There were folks at the meeting who were diagnosed just this month, after decades of confusion and questioning. I remember 10 months ago when that was me and for the first time in years I felt like I had a future.

Support groups can be lifesavers for many following their diagnosis day.  My diagnosis day was a day of celebration but the elation was soon followed by anger, grief, and a sense of loss.  Not to mention complete overwhelm as my doctor gave me information about possible therapies which led to a dark research spiral into the bowels of the internet.  I had so many questions about, really, EVERYTHING, and I was lucky to be able to meet other people with narcolepsy face-to-face within two months of my diagnosis to dig into all of the things that I wanted to know.  That first support group meeting was filled with compassion, hugs, and so many tears.  The people who sat around the table were fighting the same fight and we finished each others sentences.  I felt safe and I felt SEEN.  I felt worthy, and I knew that these people believed me.

No matter where you are on your journey – diagnosed, undiagnosed, chronic or acute illness – this is your weekly reminder that you are worthy and deserving of connection.  The diagnosis journeys that so many of us are on can take a serious toll on our sense of self worth and on our sense of belonging. The medical profession has a lot of work to do when it comes to listening to patients’ stories and trusting what we know about our own bodies.  It feels HORRIBLE when the doctor reads your test results and exclaims that “you are perfectly healthy, there’s nowhere else to go from here.”

Regardless of how your most recent doctor visit went, you are fabulous, you are worthy, you are deserving. And I believe you.

I know that not everybody has the opportunity to meet with a support group face-to-face.  Good thing there are alternatives!  I love this article about social media as therapy, written by my friend Elle on her website www.falling-asleep.com. Below are links to a few other websites that have resources for those with narcolepsy and other chronic illness.

Visit the Resources page for more ideas. Note that you might see diminishing returns to your investment in support communities. This is a thoughtful article on the possible downsides of support groups.


These recommendations are not meant to substitute for care from a licensed physician and/or therapist and for medication.

Xyrem Vol. 4

Welcome to the Xyrem diaries where I share my experience taking the narcolepsy wonder drug Xyrem and subsequently waking up to life for the first time.  These posts are a bit more technical and not necessarily meant for people unfamiliar with the medication, unless you’ve been specifically following my Xyrem journey (From AIP Paleo to Crystal LightVol. 1, Vol. 2, Vol 3.1).

I’ve been taking 3g x 2 of Xyrem, with the goal of getting up to 4-4.5g x 2 some time in the next 8 months.  Getting to 3g was rough and I did it by increasing my first dose to 3g and keeping my second dose at 2.75g for two weeks and then finally increasing the second dose to 3g.  The increase to 3g x 2 was slow because I started experiencing side effects: I was waking up with excruciating headaches coupled with sensitivities to light and noise that were keeping me in bed all day.  I had no problem when I backed down and increased slowly.

It was time to increase over the weekend so last night I increased my first dose to 3.25g and kept my second dose at 3g.  Here’s the blow by blow:

11pm: take dose 1 (3.25g of Xyrem) and set alarm clock for dose 2 at 3am .
11:45pm: fall asleep.
1:51pm: wake up naturally, feeling alert, take dose 2 (3g of Xyrem) and turn off 3am alarm.
4am: wake up feeling pretty good.
4:30am: hear the cat vomit and get out of bed to clean it up.
I stayed awake and alert until about 6am when I conked out again and hallucinated my way to 11am.

What person with narcolepsy wakes up at 4am feeling alert and able to clean up cat vomit?  How weird/cool is that?

The best part about 3.25g is that I don’t think I had a SINGLE DREAM on my first dose.  Dreams on the second dose are still A MESS and I’m trying to get my hypnopompic hallucinations under control because every morning my brain is REMming wild.  (Get it? Like “running wild” but REM? #sleepdisorderhumor #fuckincataplexy.)

I’m going to go another couple of nights at 3.25g + 3g and if everything is copacetic I’ll increase my second dose on Wednesday or Thursday.  I already love the feeling of 3.25g and it’s got me excited to keep on this mystery journey / balancing act of wakefulness and side effects.  Real life, real world, here I come! Well, maybe not for another 8 months or so but still.

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.

Concerts are fun?

I’m slowly learning how bad my cataplexy is. Apparently most people don’t have trouble drinking out of a normal water bottle? And don’t work to stay standing or to keep their head up when they laugh? These are things I’ve dealt with my whole life and had no idea they weren’t normal. I just thought I was lazy and didn’t have any self control. “Michelle why is your head on your desk?” “Michelle why are you slouching?” Um I don’t know because gravity sucks and I’m not as good at life as all of the other kids here? FALSE! Kid-version-of-me, teenage-version-of-me, freakin ADULT-version-of-me YOU HAVE CATAPLEXY!!!

I didn’t realize this until July. I had already been on Xyrem for THREE MONTHS, convinced I only had a few full body attacks every now and then, when a conversation with a neurotypical (i.e. my husband) revealed that laughing is an effortless thing for him. What the heck?!

I hate standing. Wherever I go, I look for the fastest and most socially appropriate way to sit on the floor, or get as many appendages as possible to be fully supported because cataplexy is real, being sleep deprived is exhausting, and gravity is a bitch. So concerts are my personal hell.

The last concert I went to where I had to stand up was Wilco at the Vic in Chicago in 2011. It was a disaster. Picture a girl who “faints” during the opening band and gets grilled about what drugs and alcohol she’s mixing. Fun fact, the girl is stone cold sober and had a full body cataplexy attack but we wouldn’t know that for another five years. Unfortunately we never got to see Wilco. I was tested up one side and down the other for epilepsy and other neurological disorders after that attack and when the basics were ruled out I was diagnosed with “migraines with aura; high stroke risk.”

Fast forward to Saturday night at the Sprint Pavilion in Charlottesville. Portugal. The Man. + comfy grass seating! I’ve been to concerts at the Pavilion since the Wilco mess but this is the first concert I’ve been to since the cataplexy realization. It was freeing to understand why staying upright is so exhausting. I was able to lie down on the grass and be a floppasaur without any inhibitions. Trading hyper vigilance for relaxation felt amazing and from my cozy spot on the grass I realized for the first time that concerts can be fun.