Had I written this a month ago, it would read very differently. You would read about someone living with depression and insomnia since childhood, then suffering chronic pain since her mid-20s who was reluctant to accept the many diagnoses intended to explain it all. When pills didn’t treat any of these things, nutrition proved to be my body’s Rosetta Stone, so I wanted to record what an interesting journey this has been for me, in hopes that some of my homework can help any kindred spirits out there. I’ve been meaning to do this for years now, but I have a pretty serious case of glitter-brain so that anything even a little shiny draws me in and pulls me off course. That reminds me, I need to make waffles soon.
Here’s the thing, though–here’s why I’m finally writing. I met with a doctor who has finally given me an answer. THE answer, really. Mom was right, I’m a rare breed–I have narcolepsy!
Here’s how it all went down…
About a month ago, my therapist suggested I see a sleep doctor. I had already seen one just over a decade before, but literally nothing came of it because my physician at the time chose to interpret the results rather than letting the people who do that all-day-every-day handle it. My doctor was a narcissist, and it hurt my treatment in immeasurable ways. So a few weeks ago, I went back to the very same sleep clinic I had visited in 2006, but this time the real experts were in charge. (I’ll write about the absolute mess that has been the 10 years since then later. It’s been a helluva ride, man.)
I had a sleep study that involved an overnight stay, as well as staying the following day so they could have me take naps every couple hours to see if/when I went into REM sleep. Most people have a good 60-90 minutes of deep sleep before they move into REM sleep. My brain, however, jumps right into REM after about 6 minutes on average. And I pretty much stay there, avoiding deep sleep—the sleep that allows our bodies to repair themselves and get ready for a new day. So my body has been profoundly tired since childhood. No wonder it gets so cranky!
Every day since the narcolepsy diagnosis has been full of revelations. That’s why I’m finally writing. So, assuming I can keep myself focused (new medications are helping tons with my focus already!), there will be many revelations to come. Hopefully we’ll all find some shared smiles, maybe some shared tears, and ultimately, some understanding.
Ah, and the nutrition piece! I also have celiac disease (gluten makes my body attack itself, potentially destroying tissue and preventing nourishment from food), so I’ve been living the gluten free life for several years now. I’m a great cook, and love feeding people (especially when they don’t know their feast is gluten free!), so I’ve amassed an impressive book of recipes that help keep my body happy. Based on some research that admittedly requires a deeper dive, I learned that celiac disease and narcolepsy share genetic markers. This may explain why my narcolepsy symptoms have quieted greatly in the several years since I last had a proper pizza. I don’t get the hallucinations and sleep paralysis as much, and I do seem to get a little rest somewhere in the night. Next come narcolepsy medications that should make being awake less work. I am excite.
Cheers to new perspectives! -=Dee=-