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?

Half Birthday

SLEEP&SPARKLE is my life right now. I’m trying to build my brand and grow my company into something fabulous. I’ve cut down on writing over here because I worry that posts about work will be perceived as all self-promotion-y. Where do these voices come from? Who says that? It finally occurred to me (I can be dense sometimes) that if someone hates that I’m writing about building my business they can unfollow me! #revelation

So let’s get on with it!

SLEEP&SPARKLE turned 6 months old yesterday! YESSS! I launched the website on June 5. Life is so good right now. I can’t believe that I’m a person with narcolepsy AND I’m doing something I love. While I didn’t have a diagnosis until this year, I’ve fought sleepiness (and related symptoms) ever since I can remember. I battled to keep them from dictating my life but they did, and until I started Xyrem, I couldn’t envision a future where I would be able to make a living doing something that I love, something that is so stimulating, so creative, so engaging, and so all encompassing. Maybe “make a living” is way too generous a phrase at this point in my company’s life. But I see a path forward for the first time ever. And to be honest, I can see a LOT of paths forward! Whether sleep&sparkle is a success or falls flat, I know that I’m going to be okay.

Happy half birthday to me and SLEEP&SPARKLE!

How sleepy are you?

Did you know that ADD/ADHD, depression, bipolar disorder, and schizophrenia are common misdiagnoses for sleep disorders like narcolepsy?  Sleep disorders are a lot more subtle than a person falling asleep in the middle of a conversation, despite what we see in pop culture.  People with sleep disorders, like myself, learn to adapt to our bodies gentle signals of sleepiness and can adopt behaviors that make the sleepiness appear differently than it is (e.g. binge eating, watching television, reading a book during class, procrastinating, and other self-stimulating behaviors).

The Epworth Sleepiness Scale is a tool used by physicians to screen for sleep disorders (note: it is NOT a diagnostic tool). In an ideal world, general practitioners would be well versed in the ESS and administer it to all patients who complain of sleepiness*.  They would then refer patients to a board certified sleep neurologist for further testing when appropriate. However, that is not currently the case and sleep disorders go misdiagnosed or undiagnosed for YEARS in the average sleep disordered patient.

I am not a doctor and I encourage you to discuss your concerns with a physician as soon as possible.  Not all doctors are familiar with sleep disorders.  You may have to be proactive and while your journey may start with your primary care doctor, it’s important to consult a board-certified sleep specialist. (Source.) Also note that medications you are taking (e.g. stimulants or sedatives) might impact your answers.

*Note that many people (including me) use “sleepiness”, “exhaustion”, “tiredness”, and “fatigue” interchangeably.  This can be confusing to doctors, so be sure you think about what you are actually experiencing.  Are you losing consciousness? Then use the word “sleepy”.


For each situation, choose the value that is most appropriate for you.

0 = no chance of dozing
1 = slight chance of dozing
2 = moderate chance of dozing
3 = high chance of dozing.

  • Sitting and reading.
  • Watching TV.
  • Sitting inactive in a public place (e.g. A theater or a meeting).
  • As a passenger in a car for an hour without a break.
  • Lying down to rest in the afternoon when the circumstances permit.
  • Sitting and talking to someone.
  • Sitting quietly after a lunch without alcohol.
  • In a car, while stopped for a few minutes in traffic.

Total your score.
1-6: Congratulations, you are getting enough sleep!
7-8: Your score is average.
9 and up: seek the advice of a sleep specialist without delay.

(Source: https://web.stanford.edu/~dement/epworth.html.)