Today, like most days, I feel so, so tired. Not bone-weary tired. Just narcolepsy tired.
So tired, in fact, that I fell asleep halfway through the Baz Luhrman’s Elvis Presley movie after work.
The medicine I’d been taking since October, which I had been so optimistic about, did what it was supposed to do: provide me with quality, deep sleep every night.
Unfortunately, the medicine came with a whole host of other effects, such as anxiety to the point of panic attacks, mild paranoia, gut issues, and night sweats. Those effects weren’t even on the highest dose. For months I took a reduced dose hoping my body would habituate and the other effects would disappear.
They did not.
No matter how slowly I tapered up the medicine or how I often I reverted back to a lower dose (all working with my neurologist and the pharmacy that distributes the medicine), the other effects would race back into my life.
The end result was that I had SIX AWESOME HOURS of sleep every night. During the day I felt AWAKE. My body felt strong and I had energy.
But I was also talking myself down from anxiety and panic attacks on a regular basis. Some days I couldn’t get in my car because of the anxiety. Other days I felt certain death was imminent for myself or loved ones.
I would shake while writing on the couch. My knees would knock together while I stood to talk to others.
Yet, the other effects almost seemed worth it for the SIX AWESOME HOURS.
Except, SIX AWESOME HOURS over the course of seven months is not enough sleep to sustain an adult woman with a husband, a part-time job, dogs to love, good to do, stories to write, and agents to query. By the last month of taking the medicine, I dragged more than I thrived.
The compromise of the other effects for SIX AWESOME HOURS of sleep no longer seemed worth it. So, again, working with my doctor I stopped taking the medicine. All the other effects disappeared within a day or two.
Now I’m on a new medicine. It’s not going great, but it’s not going terrible. Some days I need upwards of three hours of naps. Other days I do not. I have yet to wake up feeling rested.
There are some days I wake up at 6am, exercise vigoroulsy for 30 minutes because I know how good it is for me, and immediately fall asleep the minute I sit on the couch.
Regardless, I pretend like I am fine. Some moments I am. Some moments I’m not. Most moments what I really want is to lay down and close my eyes. Just for a minute. Maybe two. Okay, 77 will suffice.
I can’t decide if pretending I’m fine when I’m out and about in the world is the right choice. On the three-hour-nap days, I wish narcolepsy showed a visible sign so others would know I’m struggling. Then perhaps I wouldn’t have to dig deep for the energy and enthusiasm to act like a participant in my life. I try so hard to be the Kelly that is joyful and enthusiastic about life. I want to be that Kelly. Right now, she feels miles away. I hope she comes back someday
In the meantime, I continue on the best I can. I spend time with Heath, enjoying his company and his ever-improving guitar skills. We talk about The Court of Roses and Thorns book series by Sarah J. Maas. We work on puzzles together. We play games. We watch Downton Abbey (both the show and movies).
I go to work at the Norfolk Library. I plan social media campaigns like the National Ice Cream Month Tournament of Taste. I can’t believe cookie dough got ousted in the first round my pistachio. Vote here if you’re so inclined! And follow us on Instagram @norfolklibraryct if you want to see more of what I do for our community engagement.
I visit Dodger on Thursdays and walk Annie twice a week. I moon about missing Fergus because I don’t get to see him on a regular basis and he really is the best napping buddy ever.
Question: How cute is this teeny tiny screech owl named Artemis?
Answer: ABSOLUTELY ADORABLE
I write every day. Sometimes in a journal, sometimes for fun, and sometimes for the hope of publication. While I’m querying my current middle grade book, I’m revising the story I wrote about Fergus which I affectionately call Fergus Finds Adventure. (The story has a much better name now, but I’m not yet ready to share it.)
So that’s where I’m currently am. Tired, yet managing. And thank goodness I ended up not contracting covid!
Stay safe, everyone. I hope you all get AWESOME HOURS OF SLEEP tonight.