Xyrem Vol. 6: One Year

I took my first dose of Xyrem 365 days ago TODAY.  Am I better? YES! Am i still sleepy? Yes.  About 2 months ago the reality of my narcolepsy set in: managing my sleepiness is, and always will be, something I work at every single day.  You might think – “Well, yeah. You have narcolepsy.  That’s how this works.”  But I really thought that Xyrem – this narcolepsy wonder drug – was going to be something that I ramp up over the course of a year, and then I would get to the therapeutic dose and be a normal, wakeful human.  That is so far from the reality.

This last year has been a shitshow.  I’m talking “let’s take graceful photos of each other under water” kind of shitshow. Like…where you work so hard to get things to come together and then the best photo from the series is the one above.  I missed birthdays, sales tax deadlines, and still haven’t sent my best friend her wedding gift. But I let myself sleep without guilt and I took time to mourn the years I lost and the life I’ll never live. I’m free in a way I never was before I had a diagnosis and a drug that gave me dreamless sleep.  My hallucinations around sleep are drastically diminished and the same thing goes for my disturbing dreams.  These days, waking up from nightmares (like the one I had two nights ago about dogs that drown humans) is indicative of missing the alarm for my second dose (I.e. I spent too much time in REM sleep – which is my narcolepsy brain’s default – rather than Xyrem sleep).

I think that one of the best ways to describe the impact of Xyrem on my life is as a patronus.  Before Xyrem, I tossed and turned at night, and woke up from horrendous dreams only to spend hours slipping in and out of hallucinations.  It was a veritable prison.  Now when Xyrem hits me, I go to sleep and I generally wake up 2-4 hours later feeling good.  It wasn’t until my REM started getting under control that I realized how negative of an impact the nightmares and hallucinations actually had on me.  Xyrem, I will be forever grateful to you for that.

What Xyrem hasn’t given me, I’ve gotten from my community.  This diagnosis pushed me to open up about my disease to my family, friends, and ultimately the world wide web.  I made incredible friendships through this blog and met people in the online chronic illness community who inspire me and cheer me on.

It turns out that living with narcolepsy is more of a marathon than a sprint.  Perhaps thats okay.  We all have our battles and mine is teaching me to be present.

Visit my narcolepsy resource guide here, and read all of my posts about sleep here.

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!