I recently started a narcolepsy miracle drug called Xyrem and I will vouch for it being the most amazing drug in the world. Scientists don’t know a ton about how it works but there is some evidence to suggest that it acts like the neurons that are missing in my brain to help me get restorative sleep. It’s also a hardcore sedative. Due to the nature of the drug, my neurologist didn’t want me to take it on my overnight flight when I went to Germany last week so I landed in Germany more sleep deprived than my normal sleep deprived self.
I had to take a train from Frankfurt to Cologne and I knew that I was cruising for a cataplexy attack with my level of sleep deprivation. My worst nightmare is having a full body cataplexy attack by myself in public because I can’t communicate what is happening, and then add on to that a foreign country and the least convenient/most dangerous place for it to happen: on, say, the escalator in the train station.
I knew that if I slept, I could ward off the attack but norms say that taking a nap promptly upon arrival in a foreign country at 12pm is LAZY AF. And then I remembered that SLEEPINESS IS NOT LAZINESS. Thank you @project_sleep.
And I took care of myself. I plopped down in the baggage claim area which was still behind security, took my Nuvigil to prop me up for the day, and slept from 12-1:45 pm. And then I got up and went on my way, feeling safe and secure.
I resent narcolepsy and cataplexy for taking so much of my life, but I find that it takes less from me when I work with it. I’m just still learning how to do that.
What ways have you found to productively partner with your demons? And narcolepsy friends: where is the “worst” and/or must frustrating place you’ve had to crash?
May is Mental Health Awareness Month and below is my number one tip for being helpful if your friend opens up to you about something:
After showing your concern, ask your friend what their experience of whatever the label is that they tell you about.
The people who know me and have seen my life eaten away by my sleep disorder become curious when I tell them and ask “woah so what IS narcolepsy?”
When I tell people who haven’t seen the full impact of the disease on my life and/or haven’t read the blog they say “oh that’s so nice that you nap and then you feel rested.”
Nobody I’ve met (who didn’t already know someone with narcolepsy) knew that narcolepsy was chronic debilitating sleep deprivation coupled with random collapses and disruptive hallucinations. Including me, and 20 years worth of doctors.
I hope that as we go into the last week of Mental Health Awareness Month, more people get curious and ask/listen about each other’s experiences.
Doing this will make your friend feel heard and valued, which is what a lot of people with chronic illness and mental illness are seeking. In addition, you listening could help decrease time until diagnosis, particularly for rare diseases like narcolepsy. If everyone I know learns a little bit more about what narcolepsy ACTUALLY is, the next time their friend complains of similar symptoms they can say “hey, this might be crazy, but have you thought about seeing a sleep neurologist?”
Find my sleep disorder posts here.
People battling narcolepsy, other chronic illnesses, and mental illness: what tips would you give?