More Than Tired: My Life With Narcolepsy

One of my recurring night terrors is driving around this windy mountain road, and as soon as I get toward the top, my car just kind of goes off the cliff. I feel myself weightless, but like I literally cannot move. I thought narcolepsy was what we saw on TV. I had no basis for understanding it, and I never done my own research to actually figure out what narcolepsy was.

I struggled for a long time before I was diagnosed with narcolepsy. I had lots of blood work. I had lots of medications. I think the biggest struggle was the inability to do things when other people wanted you to do them. I suffered in silence until I was able to go to the doctor and say, this is what I'm experiencing. Prior to that, I didn't really have a lot of control.

I had a great college experience socially, but academically I was suffering. And that was a really big issue for me, because I was so proud of being a good student. I would nap during the day, because I wouldn't sleep very well at night and then miss all my classes. I tried to do all the things that I thought would keep me lots of chocolate, lots of coffee, things with caffeine. It was hard to explain to someone, especially a manager or supervisor, that something is wrong but I can't tell you what it is. I lost control of my life.

It was a huge relief to be diagnosed with narcolepsy, because I was able to finally say this is the problem. And this is what I need to resolve the problem. Treatment has been life-changing. The ability to take stimulants that are not coffee and chocolate that actually work has been amazing. One of the ways that I try to start my day is to reaffirm what my goals are. I really got to stick with some sort of routine. So I will go to my bullet journal and go to my schedule, and try to figure out what I need to do to make that day work. I love being able to use lots of colors to kind of get my creative juices flowing.

Getting diagnosed with narcolepsy made it so much easier to think about the future, and so I was able to be more hopeful. I now had a plan. Being able to do the things that I enjoy and the things that I love makes a huge difference.