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.

One Year of curious sparkle dirt

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” -Martin Luther King, Jr.

Flashback to January 2017. I knew I wanted to start a blog and I knew that my first post was going to be about “Hidden Figures.” What I didn’t know was EVERYTHING ELSE.

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I hadn’t been diagnosed with narcolepsy but I knew my grad school situation was untenable. I couldn’t hold down a 9-5 job 5 days/week so I took up substitute teaching and hoped that plus a record of my writing would be “good enough” for a future employer if I ever sorted out my health issues.

I had no idea that I would share my mental health history with the entire internet, post style files for all to see, and publicly embrace my maker personality and love of fashion in the form of a freakin’ accessories brand. OH! And go to Capitol Hill. This time last year I was at rock bottom. I thought things couldn’t get any worse so why not just put all of me out there? Because if one person read my blog, got a sleep study, and found an answer sooner than I did, it would all be worth it. (Sleep posts here.) I could never have guessed in a million years that 2017 would be the best year of my life. (Aside from that year I met my husband!)

Thank you for coming along for the ride! And for putting up with these gratitude recap posts every month because every month last year was a major milestone for me and I’m still processing!

Love,

The Narcolepsy Princess

A Snowy Beach Walk and Other Tools to Battle the Winter Blues

You know that feeling when you’ve been in the house for two weeks hibernating from a frozen bomb cyclone tundra and you haven’t had the sun on your skin and you start feeling off but you don’t know why?  And then your BFFLS come to visit and you go on a fabulous snowy beach walk and get in exercise, and goofing-off-time, and sunshine, and the smell of sea air, and you didn’t even know that was exactly what you needed until you get home and you can’t stop smiling?

The winter blues are real.  And I always forget how important getting outside is for my mood until I do it after a period of serious grumpiness.  Let this post serve as your weekly reminder to walk out to the mailbox or park far away from your office so you can move your body for a little longer than usual and soak up those precious sunbeams!

A few other things I do to keep my spirits up during the gray months are

You can find more resources on my mental health resource page and on the eating and bodies resource page. None of these substitute for the care of a licensed medical professional, therapist, and/or medication.

What do you do to battle seasonal sadness?

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 😳 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.

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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.