Handling Narcolepsy During the Holi-Daze
Lights twinkle in storefronts. Whiffs of peppermint coffee collect upon the lip. Bells twinkle, children sing, all that good stuff. Whether you are surrounded by family or practicing social distancing, the holidays bring up strong emotions for many.
We’ve all been affected by the recent pandemic. Social distancing has us facing a reality where the holidays this year will be spent in more solitude. The thought of spending this time away from family and friends can evoke a wide range of emotional responses.
A different kind of holiday season
Some might find that they are relieved to have a break from the performance pressures that the holidays bring. Others balk at the thought of spending the holidays alone, unsure of how to approach the sudden opening of their entire monthly schedule.
I won’t lie; the thought of not having to explain my sudden inability to participate with family on Christmas Eve due to a sudden sleep attack (or 3) sounds pretty nice. I’ve been diagnosed with narcolepsy for 3 years now.
I used to love the holidays
Before narcolepsy, the holidays were my favorite time of year. "Festivities" were an excuse to get together with friends and burn sugar cookies. Our baking skills consisted partly of bravado, some actual baking experience, and a sense of humor. Mostly, I liked having an excuse to take a break from finals week with intense sugar-filled escapades.
After my narcolepsy onset, I came to dread the holidays.
The sudden increase in the number of social events that I could no longer fully participate in became depressing to me. Social gatherings were much more complicated with narcolepsy. Fatigue and brain fog prevented me from being able to hold conversations for long periods of time. Sleep attacks interrupted my participation in events. Cataplexy attacks from laughing made me afraid to enjoy myself too much.
Relatives who don't understand
Narcolepsy took away a great deal of my functional capacity. This became more apparent during the holidays to me. Not only to me, but also to the relatives who marvel at me as if my neurological condition were a circus act.
Each year they seem to get increasingly surprised, eyeing me quizzically as if to say, “Shouldn’t you be better already?”
Coping tips for the holidays
Unfortunately, narcolepsy is a permanent condition. My new limitations meant that I had to restructure my entire life. Learning to cope with the holidays was a part of that process. Some ways that I normally handle the holidays with narcolepsy include:
1. Use a driver for holiday events
You can carpool with a friendly face or hire a cab. The important thing is that you have a safe way to get home. Driving after long events with narcolepsy can be dangerous. I currently do not drive at all anymore due to the severity of my condition. Rides can be helpful for people with narcolepsy after late or long events.
2. Take time for scheduled naps
This includes during parties! I have found that it’s easier for me to take a 15-minute nap than to suffer through an ongoing sleep attack for an hour or more. I find it best to plan naps after a meal if the event includes one. Napping en route to an event is a more discrete way to sneak in a nap. In some social cases, I don’t always disclose my condition right away. In these cases, it can be easier to sneak in a nap on the ride over than to explain to an event host why I passed out on their couch.
3. Caffeine is a friend
I schedule my caffeine dose towards the beginning of an event. I find that it can give me the boost that I need to get through introductions and get settled in. I avoid using caffeine too frequently as it can mess with my sleep schedule. However, I have found that medicating with caffeine for the holidays and other special events is a must!
Please note that these tips are more useful for a non-pandemic holiday season.
Happy holidays to you and yours!
What tips would you share that help you get through the holidays? Join our community and share in the comments below.
Do you have a service animal?