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.

On Hallucinations

“A hallucination is a fact not an error; what is erroneous is a judgment based upon it.”

-Bertrand Russell

#tbt to #Cologne in May. I was rounding out my first month on Xyrem and experiencing (relatively) dreamless, restorative sleep for the first time in my life. The hallucinations only started disappearing more recently. Before diagnosis I would go about my day with strange notions of what to expect and weird interactions with people that I couldn’t explain. My dissertation advisor would ask me if I’d gotten the email she sent me and I would be completely confused – um, of course I got your email and I responded to it yesterday morning. I had the tactile, visual, full sensory experience of typing out the email on my phone except that it never actually happened.

People with narcolepsy can experience hypnagogic (falling asleep) and hypnopompic (waking up) hallucinations that scientists think are related to semiconscious REM sleep. My hallucinations are rarely violent or frightening (as outlined in many descriptions of narcolepsy) but they are always disruptive and disorienting.

I recently found this quote from BR and it hit me in the gut because it so perfectly captures why I was in a constant state of confusion pre-diagnosis.

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!

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.