It was a rainy Thursday morning as I walked out of the doctor’s office after my sleep study follow-up appointment. The weather matched my dismal mood -- I’d just received my narcolepsy diagnosis.
In my hands were packets of papers filled with information and pamphlets of treatment options. My mom was there with me. Neither of us said much, but I knew that both of our heads were spinning trying to come to terms with the situation.
I remember feeling this odd sensation; relief that I had answers, but also like life had just smacked me in the face. It reminded me of the jigsaw puzzles I used to put together as a kid where one piece finally falls into place but the next piece is nowhere to be found.
I’ve always been a positive person, but I wondered how in the world was I going to take care of myself while still trying to work my hardest in school. I later realized that I wouldn’t be able to accomplish anything if didn’t take care of myself. My mom and I got in the car, and I started reading the packet about lifestyle changes.
It didn’t take long to realize that adjusting is the key to a new narcolepsy diagnosis. I could read the pamphlets all I wanted, but just like medication, it’s a complicated game of trial and error. Lifestyle changes affect people differently. Luckily, there are some things that I’ve found helpful to make my symptoms more manageable.
Having consistent daytime and nighttime routines can help. Listen to your body and let yourself nap. Don’t listen to the people that say, “It must be nice to nap when you want.” Napping for us is a priority, not a luxury. If you try to fight sleepiness, it’s just going to make you feel worse.
I’ve also found that I feel more awake during the day if I eat lighter meals, eat low carbs and sugar, stay hydrated, and exercise. A lot of people hit that post-lunch crash, but for people with narcolepsy, it’s much more than that. It can be a big adjustment, but once you set a routine it’ll be easier to stay consistent.
These seem like basic healthy practices, but they can help avoid triggering additional sleepiness. It can also be beneficial to have an accountability partner to keep you on the right track.
It often comes as a shock to people when I tell them I have trouble sleeping at night. People with narcolepsy don’t actually sleep all the time -- it’s more that the timing of our sleepiness is “off.” This means many people experience excessive daytime sleepiness but struggle to sleep at night.
A solid nighttime routine is just as important as a daytime routine to maximize sleep quality. Sleep hygiene is essential. I’ve found that my environment plays a huge role. Sleeping in a cool and clean room, using a weighted blanket, and having a strict bedtime are all things that help. My pillow alarm makes waking up a lot easier. It’s just a small handheld alarm that goes in my pillowcase and vibrates under my head when it’s time to get up, since I have trouble hearing my other alarms. I also try to prepare my lunch and outfit for the next day to make the morning smoother.
Energy is limited, so use it wisely. Mindset adjustments have had a great impact on my energy levels and mood, so stress is less likely to be a trigger. Spend time doing things you enjoy and cut out negatives. Try taking up a new hobby. Say “no” honestly and unapologetically.
When I feel stuck, I started using an acronym that I call SPAR: stillness, prioritize, adjust, and refocus. Slow down, prioritize your health, accept the circumstances, and refocus your energy on what’s important. You may not be able to change your situation, but you can choose to make the most of it.
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