Back when I was diagnosed with narcolepsy, a little over two years ago, (it seems longer!) I interacted for a while on the now-defunct Narcolepsy Network support forum. When I heard that the forum was going to be retired (another victim of the big blue social media behemoth, maybe?) I saved my old posts, or at least most of them. I was sad to see the forum go. There were a lot of wonderful people on there and having that outlet, and that support, helped me a lot during that time.
I have meant, for some time, to post more about this period in my life, to tell that story (it led, eventually, to my ASD diagnosis and this blog) but the Aspie in me wants to put it all in exact order, and I’ve never had the time or energy to do that, so instead I have all these partial drafts sitting in the back end of the blog, fragments gathering dust. I have decided that I am just going to start posting them, out of order, rather than not at all.
This one was posted on December 16, 2015 – not my earliest post, but one that really captures the grieving process I was going through over the loss of so many things that made me happy that I no longer had the energy for.
I decided to skip the half dose of modafinil today, since I took it two days in a row, and also because it doesn’t really seem to do much and I was curious if I would notice a difference. I slept 4:47 last night and was pretty drowsy all day, but I am not sure I was any worse than yesterday. I also had a pretty busy day, missing lunch completely and scarfing an apple and an Epic protein bar on the fly.
Since I started early and missed lunch, I was able to leave a little after 3 pm. I drove home, calculating in my head how much of a nap I could fit in before my partner got home. It was an unseasonably gorgeous day – warm and sunny and beautiful. A year ago, I would have rushed straight home, grabbed my dog, and hit the park. I had a pang of guilt and sadness as I instead quickly let the dogs out, called them back in, and crawled into bed.
“I’m not even drowsy at all,” I thought to myself as I burrowed under the covers, “I probably won’t even be able to get to sleep…”
An hour and a half later, I awoke in darkness. I never even felt myself drift off, I just went from awake and thinking to out cold, within a few moments of hitting the pillow. Gratitude for that extra hour or so of sleep warred with disappointment and sadness that I had slept away the last of the sunshine. Screw narcolepsy. This sucks.
Featured Image: Bradford pear leaf I found in my driveway, showing an interesting brown and yellow pattern. Black background, no filters. Excuse my weird ridgy fingernail.
Usually I choose images that I can crop to an aspect ratio that looks good in the blog thumbnail, but that would have ruined this one.