Disney & EDS
A couple weeks ago I got on the airplane for the first time in four years. It was a highly anticipated trip with 58 of my dancers so they could take class from a cast member, and dance on a Disney stage!
I had a lot of built-up anxiety about the trip; mostly just because of the amount of pain I've been in, and I knew my body wasn't going to hold up in the long waits, lots of walking, sitting on an airplane, etc. HOWEVER, I discovered some awesome tools that helped make the trip much less stressful!
This was oddly one of the parts I was most nervous for. Why? I'm not a nervous flyer, and the flight wasn't long, but I cannot sit for more than 15 minutes without my hip pain increasing.
Here are my best flying tips that worked for me:
If you can, upgrade to business class or switch to an exit row so you have more leg space. Being able to straighten my legs and lengthen my hips was the biggest help. Being stuck in flexion is what makes sitting so hard for me!
Don't be afraid to walk the aisle! I only did this on our flight home, but sometimes you just need to get your body moving so you can sit.
If you wear a brace through security, be prepared to take it off, or have a private screening. I did not know this was a thing and wore my back brace (which does not have metal) through security. I had to take it off and wait so they could run it through the X-ray again. They were not very kind about it, so now I know to just take it off before!
On our flight home I got very shaky (low blood pressure? POTS? who knows!), which made me very anxious. What helped fight the anxiousness was holding ice cubes - shout out to my sister for that tip!
Disney DAS Pass
When I worked in Disney World, this pass existed, but there are some awesome updates that have been made since then (9 years ago!!).
What is the DAS Pass?
The Disability Access Service Pass is designed for guests who would have a difficult time waiting in a long line/extended wait. It allows you to select one ride at a time to virtually wait in line. So if I wanted to ride Space Mountain, but the wait is an hour. you select the attraction on your app, return to the ride one hour later, and go through the lighting line (or exit).
How do you get a DAS Pass?
This was the biggest change that I noticed! You can now video chat with a cast member prior to your trip. They will then just add the pass to your account in the Disney App. It was incredibly simple (just a long wait time online). All that they asked me was, "Can you tell me what it would be like if you had to wait in a long line?"
You don't have to show any proof of disability, you don't even have to share what your disability is if you're not comfortable, you just have to answer that question. If you are going with your family, the person that would need the pass needs to be present for the call, but your whole family gets to use the pass at the park!
*You can also go to guest services in the park to talk with a cast member to get a pass!*
Was it worth it?
I could not recommend this pass enough. I had a weird sense of guilt using the pass because my illnesses are all invisible, but I cannot imagine going to the park without it now. I didn't have to stand in confined line trying to keep my joints from subluxing or increasing my pain, I didn't have to get dizzy and shaky from standing still. I got to walk around if I needed, sit if I needed, and not worry about pushing myself through pain just to go on a ride.
(I have a million separate Disney tips, but I'll keep these about Disney & EDS)
Tape and Brace. We walked 30k steps on our first day. I always made sure to set myself up for success by taping my foot and ankle in the morning before I started the day. Both my ankle and foot still really hurt, but I know without the tape, they would have been worse.
Wear a good pair of walking shoes! Make sure your shoes are comfortable and supportive, and that you have had some trial walking in them! Shoes and orthotics can make a big difference in not only foot & ankle pain, but also hips and back.
Be prepared to flair. If you are planning to Disney hard, just be prepared to be in pain. Pretty much everything hurt after the first day. Try to find a time to rest, and make sure to pack any recovery tools you would normally use to help with a flair (bands, lacrosse ball, ice, heat, turcumin, supplements, etc.)
Pre-read menus and mobile order food. I have been having stomach issues with pain and bloating after I eat, and find I am sensitive to certain foods (MCAS probably). I made sure to familiarize myself with menus and not get too many heavy food items - but nobody can stop me from eating my dole whips!! Mobile ordering is a really handy tool. Keeps you from waiting in line for your food!
Matterhorn is the one ride that I went on that physically hurt😵💫
I was only there for three days, but I'm going back in 1.5 months! I'm so happy that I can enjoy my favorite place, the Happiest Place On Earth, without having to feel completely overwhelmed by my illnesses.
Thinking back on old trips, I can see how I had such a hard time. I would feel pretty miserable on the inside. I would get super POTS-y in long lines, my body would hurt from walking and standing, but I wouldn't know how to fix it. Hooray for knowledge and resources!!
If you ever need more Disney Tips, you know where to find me💕🦓
Stay Kind. Be Brave. Much Love.