two people stand next to a car, the woman has a folder and a bag with her and a plane flies overhead

Narcolepsy Traveling Tips (Part 1): Going on Vacation

I have always loved to travel! I have traveled from one end of the United States to the other in planes, trains, automobiles, and semi-trucks. I have traveled to Mexico 5 times upon a cruise ship and have vacationed in Canada. I have never done a big international trip or traveled across seas; however, I will one day!

Vacationing can be difficult as a narcoleptic. It is not impossible; however, it can be tricky. Our needs can range from little quirky preferences to extremely important schedule requirements. Therefore, I start getting ready for my travels one week before we depart on our adventures.

Adjusting my sleep patterns in advance

If I am required to leave earlier than I am accustomed to, I will start to change my sleeping patterns 3-5 days in advance. I will adjust my wake, nap, and sleep times so I am not struggling to keep up the first day. I try to start my vacation with a clear head because I know each day it will get a little more difficult.

Don't put off packing to the last minute

I will start packing my clothes a few days in advance as well. I can tell myself I will remember everything if I try to pack the night before, but it never happens. I forget things, and the rushing triggers my narcolepsy. The last thing I need is to mess with my sleeping pattern the night before!

Hard copies for the win!

I print everything I need even though I have a phone to keep screenshots and emails. I always have a travel folder that I take with me, and it helps me to find things faster. I get anxious if I need to look through my phone for tickets, information, etc. Anxiety is a trigger for me; therefore, I try to avoid it at all costs.

Clearly communicate your transportation needs

When you are traveling via automobile, it is easier because you are in a semi-controlled environment. You’re able to nap and stop periodically to stretch your legs and “wake up.” If you are traveling with others in a separate vehicle, you can give them the option of stopping with you each time or meeting up at your destination.

I have found that my friends and family will usually stop when I need to, and they have been very patient with me. The most important part is to communicate with them beforehand. Nobody likes unscheduled additional 15-minute breaks!

Keep medications accessible

No matter where or how you travel, always keep your medication in a bag you have access to. Do not put it in your baggage that you check-in. Keep it in your carry-on or in a backpack separate from your suitcase. If there are any delays or accidents, you will still be able to take your medication on time and when needed.

When traveling with Xyrem or Xywav, you will be required to have it x-rayed and inspected when going through the security check at the airport. I will take a sealed, unopened bottle with my prescription sticker on the outside. I have been questioned about it, although I have never been delayed or denied boarding. It tends to be a pretty easy process.

Explore the world!

Don’t let narcolepsy stop you from seeing the world! The better you plan, the better your vacation will be!

These are just a few tips for traveling! I will follow up with cruising advice and how to make your home stress-free when you return from your trip.

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