How I Learned to Manage My Narcolepsy Symptoms
When I disclose my narcolepsy diagnosis to people, I often receive a response that frustrates me. They say things like, Really? I never would have guessed. You don't look like someone who would have that. It annoys me because narcolepsy is an invisible condition, but the symptoms and episodes can be very visible at times. However, I'm thankful that I have discovered ways to manage my symptoms.
When I was first diagnosed, my doctor overwhelmed me with information about treatment options and tips for managing my condition. It made me wonder how I could plan for symptoms and episodes that are so inconsistent and spontaneous.
One of the most challenging aspects of adjusting to a narcolepsy diagnosis is realizing that there is no one-size-fits-all solution. What works for one person may not work for another in terms of symptom management and finding the right medication. I remember being in college and feeling suddenly sleepy in class, even though I was alert just moments before. It felt like I was drowning, struggling to stay above the waves crashing down on me.
I later learned that this is referred to as excessive daytime sleepiness, one of the many symptoms experienced by people with narcolepsy. Other symptoms include hallucinations, sleep paralysis, disrupted nighttime sleep, brain fog, and cataplexy (muscle weakness due to strong emotions). It's important to note that symptoms vary from person to person, and not everyone experiences all of them.
I have learned to accept my situation, listen to my body, and understand my limitations. I know that trying to push through an episode will only make me miserable. If I sense an episode coming on, I remove myself from the situation and find a safe place.
For instance, there was a time when I was studying at my desk and felt another wave of sleepiness. Instead of fighting it, I knew that the most productive thing to do was to take a 20-minute nap. When I woke up, I felt refreshed, alert, and able to retain the information I was studying.
Around a year ago, I stumbled upon a podcast called The Mindset Mentor, where the host discussed tracking energy trends to maximize productivity. Inspired, I decided to adapt this approach to my narcolepsy. I started tracking my bedtime, wake-up time, sleep quality, and medication intake. By analyzing these trends, I realized that I am most productive between 8:30 and 11:00 a.m. I then plan my days accordingly. While not a perfect solution, it has been helpful.
However, there are still some challenges, like brain fog. To cope with this, I have started using the phrase I need a minute when I need time to regroup. Opening up about my narcolepsy has actually helped others understand me better. It allows me to advocate for myself and bring awareness to my condition. This is not about making excuses but about finding understanding and support. Although it can be frustrating, the individualized nature of symptoms and episodes gives us the power to find a management process that suits our needs.
My advice to others in a similar situation is to remain patient and listen to your body. It may take time, but you will eventually discover what works best for you.