Here is my approach to handling my Disney vacation while living with POTS and other chronic illnesses.
Disney trips can be challenging for people with chronic illnesses like Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia affecting blood pressure and heart rate regulation. Dysautonomia disrupts the body's autonomic processes, impacting functions such as blood pressure and heart rate control. But POTS usually is more than just a rapid heart rate. For me, it comes with symptoms like lightheadedness, fainting, shortness of breath, nausea, temperature sensitivity, brain fog, and fatigue. Unfortunately, symptoms can be aggravated by things like warm environments, prolonged standing, and inadequate salt intake, which are difficult to avoid on a Disney vacation.
In the spring of 2022, I was diagnosed with POTS. It was a relief to finally have a name for my condition and a treatment plan, but it was also overwhelming to think about how my daily life might change to manage my symptoms. As someone who loves visiting Disney parks and being there for the rope-drop, I was worried about how difficult it might be to handle a future Disney vacation. For a while, I felt a little hopeless.
However, by working with my care team, I’ve found that I can still find ways to enjoy the magic – it's just a little different than it might’ve been 5 years ago.
Tips for Doing Disney with Dysautonomia
I have tried many things to help ease my symptoms of POTS while on my vacation. Here are some strategies that have worked for me. It's important to remember that every case of POTS is different, and it's essential to work with a doctor to find the best approach for you or your loved one.
Stay Hydrated...
One of the most common treatments for POTS is to increase fluid intake. Thankfully, Disney parks have many locations available for water refills, so make sure to bring a refillable water bottle. I like mine to have a built-in straw that is narrow enough to hold with one hand.
And Stay Salty
Another common treatment is to increase salt consumption. Not only are you going to likely be more active during your vacation, but you’re also probably going to sweat a lot. I like to add electrolyte powders to my water during every refill to make sure I am keeping my salt intake high and blood volume up.
Prepare Your Wardrobe
While you need to be prepared for the parks to be hot, you should also make sure you are keeping areas of your body compressed. My physical therapist recommended compression garments to help move blood from the legs back into general circulation. I found that the days I had the most energy were the ones when I was using my compression tights.
When thinking about your wardrobe, also think about layers. You’ll likely be transitioning between hot, outdoor environments to extremely cool, air-conditioned indoor spaces. I found that bringing a lap blanket or jacket helped keep my body temperature more regulated during these transitions and as the temperature cooled off at night.
Utilize Mobility Aids
I was initially nervous about using a wheelchair or Electric Conveyance Vehicle (ECV) because POTS isn't a visible disorder, and I felt like I would be losing control over my park experience. However, I quickly realized that using an ECV gave me more independence and energy! Mobility aids can be rented at the entrance to most Disney Destinations, and you can rent ECVs through an external vendor like Walt Disney World’s featured provider, ScooterBug.
I always bring a cane with me when I travel. Having a little extra support when walking and standing keeps my energy up. By having my cane handy, I feel more mobile and can get in some exercise. I've also heard about people bringing collapsible stools with them to help when standing in line or watching fireworks. Disney doesn't have these items readily on hand, so make sure to pack whatever supports will help you throughout your day.
Plan Your Meals
One of the symptoms I experience is the lack of hunger, but when I do feel hungry, it's usually accompanied by nausea, and that's when I know I need to eat soon. Because of this, I always carry snacks with me. Guests are allowed to bring food and non-alcoholic drinks into the park for their own consumption, so I like to pack some protein-rich snacks along with a little extra sugar to help.
I often find it difficult to plan out my meals due to brain fog and fatigue. I also have dietary restrictions, but I've found that Disney is one of the best places to visit if you have food allergies or restrictions. Before my trip, I spend time reviewing menus to plan while I have the energy before the trip. I also make use of mobile ordering and advanced dining reservations to help minimize waiting and thinking time around food. This helps streamline the process and makes it easy to plan meals into your day. I prefer getting dining reservations at table service restaurants because it gives me a chance to sit and be in an air-conditioned environment, both of which help me manage my symptoms.
Remember, anyone can order off the kid’s menu. I learned this tip from Bethany Vinton. Ordering kids' meals not only saves money, but it's also perfect for me because I don't digest food very quickly. Eating smaller meals helps me conserve energy, which I want to use to become a Galactic Hero. Additionally, ordering from the kids' menu helps prevent food waste.
Remember to Accessorize
Numerous products are available to assist in managing symptoms effectively. Fans and cooling towels were particularly essential for me. Given the high temperatures at Disney, having increased airflow around me was crucial for cooling down my body. I relied on a stroller fan for the ECV, a neck fan, and cooling towels to regulate my body temperature.
I also enjoy having items that can assist me when my senses are overwhelmed, especially in situations where sounds, sights, and smells can be too much to handle. Noise-canceling earplugs or headphones can be beneficial when waiting in lines or watching loud events like evening fireworks.
Rest
Rest is one of the most crucial aspects in managing your POTS symptoms. Keep in mind that the parks will still be there when you feel prepared to return! Taking a nap or unwinding in the pool can assist in rejuvenating your body for further activities.
If you don't want to leave the parks, plenty of rides and attractions are great places to get a break in air-conditioning. Here is a detailed list of places to visit that are mostly stationary with the length of time you can plan on the break - https://wdwprepschool.com/best-rides-out-of-the-heat/.
ABOUT THE AUTHOR
Emily the Travel Genie is an independent travel consultant with Genie Travel Company, a division of Riverdale Travel. She is passionate about travel and all things Disney. She loves providing knowledge and resources to help make the planning process stress-free.
*The content in this blog is provided for general informational and educational purposes only and is not a substitute for professional and/or medical advice. Please consult with your physician before making any medical decisions. For questions about booking a trip to Walt Disney World, please contact your travel agent.
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