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.
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.