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Postural Orthostatic Tachycardia Syndrome Makes It Tough To Attend Theme Parks, Zoos, And well, Anything That Requires Walking Or Standing In Heat and Humidity
How To Pack For A Vacation During Florida’s Heat And Humidity… or…well… Any Trip During The Summer
This post goes for just about anyone as most people have trouble when they are in extreme heat.
Our 10 year old son Nick suffers with a medical condition called POTS: Postural Orthostatic Tachycardia Syndrome which is a form of Dysautonomia; which is a glitch in the nervous system where the blood does not flow to the extremities properly causing easy dehydration, rapid heart rate, blood pressure hypotension or hypertension. We believe may have this due to having Ehlers Danlos Syndrome – which he has a working diagnosis for. Ehlers Danlos Syndrome, “EDS” is a joint connective tissue disorder causing joint hypermobility, frequent dislocations and pain. POTS seems to go hand-in-hand with EDS or possibly EDS causing the POTS? Both being a form of Dysautonomia and both still a lot of research being done on these chronic medical conditions. POTS also creates dizziness and for some people like my son Irritable Bowel Syndrome. It can cause him to have extreme pain at random times, while it may wake him from his sleep or we may be arriving to a breakfast reservation and he spends most of the time in the bathroom. Thankfully Nick has a more mild case so it will pass with a little time some people are more severe and some bedridden. Individuals that are more severe with mobility issues should consider speaking with their physician before their trip and possibly renting a scooter or wheelchair.
When you know you’re going to Florida during the summer heat, OR ANYWHERE DURING THE SUMMER you have a lot to consider. The Florida Heat and Humidity Season typically starts in the Spring and ends late fall. But this goes for really any trip planned during the summer months in any part of the U.S. that requires being outside, in the sun, and lots of walking.
Keep in mind during the summer months, no matter where you go people are on vacation so it will most likely be crowded – especially in Disney World. Prepare yourself for lines and when we are post-Covid most likely being in crowds once again. A lot of this will come in handy for walking zoos, museums, boardwalks, nature trails and pretty much any outdoor activity during heat and humidity. For POTS patients this list is pretty much a daily necessity regardless of weather. You can never be too prepared.
Your Packing Itinerary:
- Your Salt Sticks and Medicine! First and foremost, do NOT forget your salt sticks and whatever medicine you use daily! It is a pill filled with electrolytes and salts to help your body retain water. Make sure you have your acetaminophen and ibuprofen with you for any unexpected headaches or muscle pain. Link provided for salt sticks:
- Cooling towels – I know you’re not supposed to but I pack mine in zip log bags with ice… Disney won’t let you enter the park with ice but you can ask for a cup of ice at any quick service. **TIP** Grab a FREE cup of ice or ice water from any quick service. Chewing on ice helps cool your insides. Link provided for cooling towels:
- Lightweight Sun Umbrella – for when you’re tired of feeling the heat of the sun on your body. Comes in handy for parades – hopefully we will see them again in 2022?! But during the summer it rains often in Florida, so these are nice to have in your backpack for an unexpected rain storm. Link provided – click link for umbrella:
- Electrolyte Water / Gatorade: PACK YOUR OWN – Shoprite now has a Bowl And Basket Brand which is much cheaper than Smart Water. Smart Water and Gatorade are ridiculous at any park! Hershey Park let us bring in our own drinks and snacks. Disney World always lets you bring in as much food as you want. Some parks will only tolerate one drink per person, but you could always leave a cooler in your car (If you have it with you) in the parking lot and run back to fill up.
- Pack Snacks – Nick tends to have some hypoglycemic symptoms (along with my Type 1 Diabetic husband). It is always best to have some salty or healthy snacks packed to help boost energy levels and prohibit crankiness. This rule falls true for just about anyone!
- Utilize Disney’s DAS (Disability Access System) – *if you or a member of your party has a disability or medical condition where they are not able to stand at long periods of time: Disney’s DAS gives you the freedom to not have to wait in long lines. Simply pick a ride that you are not able to stand in, and someone scans your Magic Band – giving you a return time to enter Fast Pass. So you are not cutting anyone, just giving you the freedom to sit if you need to until the time to return for the ride. You set this up when you arrive at any Disney Park and if you ask there is always a Cast Member with an IPAD around to help you get started.
- Neck Fans! – we basically wear Neck Fans the entire time we are walking parks, nature trails, boardwalks, zoos etc. Especially with having to wear masks for a while…
- Breathable Masks – this stands for itself! Just ordered some masks off of Shop Disney and we are hoping they are breathable and comfortable – but time will tell. A lot of people find that the simple blue disposable masks are the easiest to
- Lightweight/ Breathable Hats / Sunglasses
- Sunscreen – a sunburn will not help anyone feel well especially if you are affect by POTS or another form of Dysautonomia. I love an easy stick-for-the-face sunscreen.
Links provided for neck fans:
You would want to consider bringing along a few pair of lightweight, supportive, breathable shoes. My son enjoys his Crocs but he also likes Under Armour Sneakers with his inserts. Everyone should bring more than 1 pair of shoes especially to Disney because you never know when you will get caught in a rain shower or down pour.
My advice is to practice walking every day before you head out on your trip. Any vacation to any theme park, or virtually anywhere is going to be a LOT of walking. Try to get yourself in shape before you venture out. Start by trying to walk a half mile, and then after a week increase to walking a full mile each day. Not only is this beneficial for your health but you will avoid any unwanted muscle pain, blisters etc. Make sure you break-in, and wear whatever shoes you plan on bringing with you to ensure that they will be the upmost comfort.
My tip for any sore feet and muscles is this Epsom salt lotion that I purchase off Amazon as well as bringing some Magnesium supplements but please check with your physician first. Magnesium can also give you the runs, so you want to check into it prior.
I also believe in soaking in Epsom salts when sore so I like to purchase Dr. Teal’s bath wash off Amazon, Walmart or Harmon’s Face Values.
Always soak with Epsom salts and use the Muscle It cream at night – because it does make you sleepy.
HOT TIP: if you decide to shower in the morning before you start your day, especially in Disney World, try a cool shower so you start out cool and refreshed ready for the day! Just remember not to use anything that will make you sleepy and definitely as cool of a temp that your body can handle and feel good!!
When staying in Disney World on property, try to pick a resort where you do most of the walking INSIDE.
If this is not possible financially, then try to pick a preferred room so your room is closest to the bus, food and lobby. Sometimes if you pay a little more for a better resort you do most of your walking inside the air conditioning and this is very helpful. Staying at Animal Kingdom Lodge vs staying at Art of Animation during the summer months can make a huge difference and pricing is comparable. Animal Kingdom Lodge has ALL of the rooms inside, so there is no need for extra outside walking in the heat, where Art of Animation can be a LOT of extra walking outside with no shade whatsoever. This can make a huge impact on how you’re feeling. Do not misunderstand me, Art of Animation is fabulous with fantastic Disney theming but while we stayed there in August 2016 in the Cars Section we all had heat rash from the extra walking in sun with no shade. Some of our favorite resorts with indoor rooms consolidated into 1 building, (or walk INSIDE between buildings) would be the Animal Kingdom Lodge and the Wilderness Lodge. Port Orleans French Quarter is an extremely small and shady resort so this resort may be fine, where Port Orleans Riverside can be a LOT of walking if you do not have a preferred room.*
Check out my YouTube Video on Packing Tips and prepare to have a chuckle
What tips do you have for traveling during the summer or in the tropics?
What are your future plans?
I would love to hear about any tips or suggestions you may have below!
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