Sleep is not going well. Since sleep is the foundational support for so many other things in life, I am struggling.
For the last two years, I’ve been actively trying different solutions. None of them have had a marked improvement. In July I started a new medicine. At first there was hope. Then when my doctor increased the dose, I had every psychological side effect listed on the pharmacy insert, including the very scary ones. I’m lucky I didn’t end up in the hospital.
I suspect the stress of that situation is what kicked off a round of shingles. I had shingles before when I was 38. Shingles, of course, comes with its own host of problems, and the fallout from this time around has made the sleep situation worse.
When I went for a physical on Thursday, the nurse did a depression screening as part of my vital signs. You know you have a good doctor’s office when they’re this thorough. I scored in the “severe depression” category.
I explained that these depression screenings don’t have discriminate validity between depression and narcolepsy. So, yes, I may be severely depressed, but the narcolepsy came first.
I am now so tired that there is a sea of tears living behind my eyes that can break free at any given moment. Even the smallest crack can release a torrent. Some people get anxious when they’re exhausted. Some people get angry. Some people eat a lot of cupcakes. I cry. I’m not sure if that’s better or worse than the other options.
Part of the problem with an invisible disability is that oftentimes I look fine. And a lot of the times I pretend I’m okay even when I’m not. Someone even recently described me as “bubbly.” Those times are usually an act. Unfortunately, we live in a society that ties health insurance to employment and so I play along because I feel I have no choice. I can’t not go to work every day I’m tired because then I’m just not working and would need to apply for social security disability.
The acting takes a lot of energy and stamina, although sometimes pretending I’m fine is less work than telling people the truth. People with narcolepsy have a saying, “My tired is not your tired.” So when I say I’m exhausted, a lot of people sympathize because they think they know what it’s like. It’s not the same. Research backs me up on this fact. When a person with narcolepsy wakes up from eight hours of sleep, the sleep is such poor quality and the deficiency of the neurotransmitters orexin or hypocretin in our brains is so great that we feel like we are on day three of sleep deprivation. Every. Day.
Unless we’ve found a treatment that works for us. I have yet to find that treatment.
We also spend more time dreaming, in bright, video colors, often with nightmarish or traumatic plots. It’s not unusual for a person with narcolepsy to wake up with post-traumatic stress from their dreams. Brain imaging studies have shown that the same areas of the brain are activated whether you are acting in real life or acting in a dream. For people with narcolepsy, our brains get no rest from that activity.
Even our more mundane dreams are exhausting. This weekend the Norfolk Foundation is hosting the Haystack Mountain Book Talks. Even though I have yet to read any of the books, a few weeks ago I dreamt I was in charge of the program, which had all kinds of logistical problems in my dream, and then I sat there and listened to every single presentation. Can you imagine the brain power it takes to create multiple hour-long lectures of a book you’ve never even read?
Explaining all these truths about narcolepsy is something I like to do when I’m in “sleep evangelist” mode. But now when I’m tired. These conversations are difficult to have.
Also, there are times when I’m actually okay even through the tiredness. Sometimes even joyful. Those times usually involve being with people I love, a dog, being in nature, or perhaps talking about a book or something else that still holds my interest through the sleep deprivation (though there’s not that much these days I find interesting).
So I can’t at all blame people for thinking I’m okay because sometimes I pretend I am and sometimes I actually am and all the other times I’m not. Maybe I should get three versions of the same t-shirt that says: Okay, Not Okay, and Pretending to Be Okay. On the back it would say “Don’t Ask.”
I have an appointment with my sleep doctor on October 5th. I’m afraid I’m putting too much hope into this appointment. But I don’t really know what else to do at this point, except keep doing what I’m doing and wait for October 5th.
Special shoutout to Heath who has been incredibly supportive and loving during this time. I know I could manage without him because I did for years. I’d rather not.