Narcolepsy in the Wilderness

As a person with narcolepsy, I have significant limitations in my daily life. Sleep attacks are routine for me and often occur unexpectedly. My cataplexy can cause sudden paralysis that may create dangerous circumstances for me.

As a person who would like to spend most of their time in nature, these symptoms create barriers that are difficult to overcome. I consider myself a moderately outdoorsy person. I would like to be an extremely outdoorsy person, to be completely honest.

I prefer the great outdoors to the 4-walled boxes we live in. However, my narcolepsy creates blockades that are difficult for me to hurdle.

Safe transportation to and from my hikes

I’d say that so far, the biggest barrier I have to being an extreme outdoorswoman is finding safe transportation to and from my hikes. As a person with narcolepsy, I struggle to drive safely due to my condition, and adventures off the beaten track usually require long driving trips.

I may be able to make it to my destination without nodding off on a “good” symptom day, depending on the length of the drive. However, the most dangerous part of the whole trip is probably the drive home. After a long day of trekking over bushes, rocks, and sometimes steep terrain, I am not in a safe neurological condition to drive a long distance.

Long hikes = sleep attacks

Out of pure necessity, I find myself planning short hiking trips that are close to my place of residence. This means that hikes longer than 2 miles are rare for me. I love the feeling of crisp wind on my face while exerting myself to the point of near exhaustion.

However, by doing so, I am pretty much guaranteed to experience a sudden sleep attack. Thus, short hikes are the only hikes that are accessible to me. This is frustrating for many reasons. I would like to progress to hiking long trails so I can eventually hike through-trails such as the Appalachian Trail and the Pacific Crest Trail. These are usually trained for by progressing hiking distances over time. My inability to do so creates problems for me that I have not yet found solutions for.

Brain fog = navigation issues

One of the most important skills to have in the wilderness is navigation. As I hike, I experience brain fog that slowly gets worse with time. This brain fog leads to a great deal of confusion in terms of navigating, which poses certain danger.

Getting lost while exploring the wilderness is one of the more dangerous things you can do. Taking “navigation” breaks can help this problem but does not solve it. I am just as confused when experiencing brain fog while sitting on a rock as I am when walking the trail.

'Bad' days thwart my plans

Even if I were to plan a perfect short trail that is close to me and thus accessible, there is always a chance that I will wake up the morning before to “bad” narcolepsy symptoms. These days can be debilitating for me and usually result in the cancellation of the trip.

Do you struggle to do things you love because of your narcolepsy symptoms? Please share your experience with us in the comments below.