A Day in the Life With Narcolepsy

Every facet of my life is affected by my chronic disease, narcolepsy. In the early years of my disease onset, I found that I spent more time mitigating my disability than living my life because of how severe my symptoms were.

The severity of my symptoms can oscillate a bit but have since improved with an adequate treatment plan. Still, there is not a day that goes by that my life isn't affected by this disease.

A typical morning with narcolepsy

A typical morning will find me lying in bed, struggling to convince myself to put my feet on the floor. I repeat to myself, "I can do this, I can do this," only to find that it becomes more difficult the longer I lie there.

A deep sense of shame can fill me during these times, as I remember the words my first sleep doctor told me after I informed him of my uncontrollable sleeping habits. "Wow," he grinned with a hint of disdain. "I haven't slept in past noon since I was a kid." I hold back tears at these memories. The old days were so hard.

Strategically planning a bike ride

I want to ride my bike in the morning to watch the sunrise and listen to the birds sing. However, I have to plan my bike rides towards the late afternoon. Why, you might ask?

It serves the dual purpose of waking me up during my pronounced afternoon slump and ensuring that the sleep attack that follows exercise will occur in the evening rather than the late morning. Sounds confusing? That's because it is.

Limited energy for activities

Say I have a Zoom meeting at 10 AM, and I have been out of milk for a few days. A trip to the grocery store would have to be planned very carefully. As a driver with narcolepsy, I struggle to be alert. An early morning grocery trip would leave me too tired to attend my Zoom meeting. As a result, I would have to plan to go to the grocery store after the meeting.

However, I start having sleep attacks during meetings around the 45-minute mark and that doesn't just go away. I would be forced to take a nap after my meeting in order to drive to the grocery store and back safely. Not to mention that when I am grocery shopping, I have to cut my visits short in order to ensure that I do not have sleep attacks in public.

Avoiding overscheduling

On days that I have an event planned, such as pottery, yoga class, or hiking, I must refrain from scheduling anything else that day. Overscheduling myself, especially when I struggle to drive, would find me in potentially dangerous or unmanageable situations.

Doctor's appointments must be scheduled in the early morning when I am the most alert and can handle driving to the office and back home.

How does your narcolepsy affect your everyday life? In what ways do you have to work around it? Let us know in the comments below!