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.