After months of doctors and no answers, the appointment in which I got diagnosed with Narcolepsy was a bit of a non-event. All the build-up, but the payoff was a foregone conclusion. I had so much time to read about it that I wasn’t surprised by the diagnosis.
I was surprised by my sleep test results. As you may recall, the test involves sleeping 8 hours overnight and then being left in a dark room every 2 hours to see if you nap and how long it takes to fall asleep. A normal person might not fall asleep at all if they got enough sleep the night before. I fell asleep in every nap – it took me an average of 4.5 minutes to fall asleep in each – 8 minutes or less is the general consensus on what is pathological sleepiness and I was half that. Continue reading “Adventures in Narcolepsy, Part 6: The Sleep Doctor”
A letter from the night before diagnosis. I didn’t originally write this for publication, but just to work through my feelings. After re-reading it with a little distance, I decided it offered some insight into what it is like to have chronic conditions and what it is like to be facing a diagnosis of something incurable. It’s important to note that this was simply me at my nadir, I have, for the most part, been a lot more positive both before and since, and being diagnosed came primarily as a relief. Content note: It’s a real downer.
It’s difficult to explain how profoundly tired I am and how much this is hurting my life. Sleep deprivation affects everything: my ability to pay attention, my ability to control my emotions, and my ability to mentally perform are all suffering. Between my anxiety about what is, at this point, almost certainly narcolepsy and the actual effects of that narcolepsy, I am really struggling. Continue reading “Adventures in Narcolepsy: Part 5, The Dark Place”