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5 Tips for Traveling with Dysautonomia by Chelsea Goldstein


Traveling can be an undertaking for anyone, but it is particularly difficult for those of us who are balancing our precarious health and our everyday lives: you could be thinking, “How could I possibly think about travel in addition to everything else?” Travel IS possible with dysautonomia though it can be difficult. However, the rewards of traveling, whether they are exploring a new place or visiting loved ones, can be well worth the struggles.

Here are five tips for traveling with dysautonomia:

1.    Build in margin. This was the best travel advice I ever received from a stranger on a plane. She told me the key to reducing stress in life was building margin into everything you do. Do you think you need two hours to get through the airport? Schedule two and a half. That margin allows for any unforeseen mishaps (which will certainly happen) and prevents you from rushingairplane.thumb.jpg.47b6339806dc0ea08a2874e8a6705d40.jpg. For me, rushing is almost guaranteed to cause a flare, whether it be moving too quickly and getting my heart rate too high, or the stress of rushing causing me to forget something important.

2.    Prepare, Prepare, Prepare. For anyone, forgetting something on a trip is annoying but, for us, it can mean the difference between being relatively healthy and really, really sick. Not to mention, we have that pesky little thing called brain fog that can make remembering things tricky.

Start packing early and always use some type of checklist that you refer to multiple times. If you travel frequently, keep a core list of items you need, organized by category (e.g.; medications, toiletries, core clothing, assistive devices, etc.), and you may even consider making supplemental lists for specific types of travel (e.g.; summer trip, winter travel, staying with friends/family, etc.). Also, NEVER cross anything off your list until it is permanently in your bag. This prevents major mishaps such as taking your medications out of your suitcase the night before and forgetting to put them back in your bag because they were already crossed off your list.

Next, *try* to pack minimally. This does not mean leaving your essential medical devices and medications at home—we know that it may be impossible to pack light with these items. This does mean, however, that if you are going to be lugging a lot of medical items around you may thank yourself if you leave that cute, but impractical outfit at home. Try to pack things that are multifunctional (e.g., comfortable shoes that can be dressed up or down) to limit the physical and mental stress of keeping track of (and carrying) so many things!

3.    Know that air travel IS possible. I used to love the thrill of flying and the energy of the airport. I still do, as long as I am realistic about how I navigate these situations with dysautonomia.

Start preparing the week before you fly. Prioritize light, daily stretching to prevent muscle cramps. Drink even more water than usual two days before the flight. Make sure you have everything you need; for me, this includes high-quality compression socks, comfortable clothes, my medication (always, always in my carry-on!), a vomit bag, a neck pillow, two empty water bottles (refill stations are in most airports), salty snacks, a packet of electrolyte mix, and a tube of Icy Hot. Your list may be different, but put some thought into it ahead of time. Also, the flight will likely be uncomfortable, so balance that by treating yourself! Save a book you’ve been wanting to read/listen to for the flight. Download your favorite TV show to binge watch. Bring snacks you love.

Next, it never hurts to ask. Call ahead and arrange a wheelchair or trolley escort through the airport, if needed. If meals are being served on the plane, call the airline to be sure your dietary restrictions are on file; they will bring you meals to accommodate your restrictions, and you will get served first! If your suitcase is overweight, or you have extra bags, due to medical devices remind your gate agent that they cannot charge you baggage fees for these items. Request a hand security check if removing your medical devices is a hassle. Make your airline aware of your condition (even if it is invisible), and request to board with those who need additional assistance. Sometimes, upon request, the airline may even give you the bulk seat which has extra legroom, for no additional charge. It doesn’t always work, but it is worth a try! It is always helpful to have documentation of your condition with you, in case anyone questions you.

Lastly, try not to be embarrassed about asking for needed accommodations. Admittedly, I do sometimes get shy about asking for help, but I am always so grateful I chose not to stress my body more than it needed to be.

4.    Plan for arrival fatigue. Travel is tough. You will be tired when you arrive at your destination. If you flew to your destination, have a plan in place to get to your accommodations painlessly—call ahead to arrange a pick-up car or shuttle, check to make sure Uber/Lyft regularly frequents that airport, or have a loved one pick you up. Save walking and exploring public transportation for later in your trip when you feel more rested.

Plan for a travel flare, but hope it never comes. Try to limit your activity on your first day of arrival. Also, be easy on yourself if you need to take one, two, even a few days of your trip to rest. I used to get angry with myself when I traveled to an amazing location and spent half the time in bed and, ultimately, pushed myself too hard. I’ve changed that mentality. If I need to rest for three days, so be it, even if it means that I only get one day of truly enjoying my trip. To me, one day of actual enjoyment is far better than five days of pushing myself to the point of distress.

Jetlag can be a whole different beast for those of us with dysautonomia when changing time zones. Do your best to follow the golden rule of jetlag – try not to sleep during the day. That being said, those who created the golden rule probably never felt the crippling fatigue of dysautonomia. If your body is forcing sleep upon you that you can no longer fight, do not stress. Sleep. You may take longer to adjust to the new time zone, but it is worth it to keep yourself as healthy as possible. You will probably wake up at strange hours of the night. Have a good book on the ready to distract yourself because stress will only keep you awake. You will adjust eventually.

5.    Choose accommodations wisely. I am all for getting local experiences, but accommodations may not be the way to do that when you have dysautonomia. The benefits of a chain hotel include standardized rooms and knowing what to expect. They may have transportation to and from the airport, you can control the temperature of your room, you will know the quality of the beds and linens, you will have a private bathroom, and you can request an accessible room. Upon asking, you can usually get needed items like mini refrigerators, extra pillows, and microwaves. Staying in a local hotel or Airbnb is not impossible, but you should do your research ahead of time to make sure you will be comfortable.

It can be trickier to navigate staying with family, friends, or renting a house with a group of people. You will probably have less control over access to food, the comfort of your bed, noise, lighting, and temperature. You may also feel torn between engaging with your companions and retreating for much-needed rest. In these situations, do your best to educate your loved ones early and often about dysautonomia. You can even have an advocate help you do this if you are uncomfortable. That being said, many loved ones have the best intentions but still may not fully understand your needs so you may need to make extra preparations. If you are driving, bring your own bedding that you know is comfortable. I have come to love my sleeping headphones; a  headband I can pull over my eyes with soft headphones built in to drown out noise. If food is a concern, offer to grocery shop for the hosts as a way of thanking them, which also ensures you have some foods that you can eat. Or, cook dinner one night – sharing a favorite recipe is a great bonding experience, AND you can cook something that works with your body. If you are renting a group house, offer to be the person that manages the booking situation to find a house that meets your needs. In doing so, you can be sure you won’t be stuck on a rickety pull-out couch or sharing a bathroom with eight people.
Most of all, be honest with your loved ones. Most people will appreciate your honesty, and will not view you as difficult or high-maintenance. I have found that when my needs aren’t considered in group travel situations, it is usually the result of a misunderstanding, which can be rectified over time with communication and education.

While each of these tips could be an article in their own (perhaps, they will be in the future!), we hope these brief tips provide you with some ideas—and confidence—in planning your next adventure.

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