The tricks, preparations, and small miracles that kept me going in the happiest (and most exhausting) place on Earth
I recently had the opportunity to go to Disney World for five days. While I am a huge fan and have always loved theme parks, I was quite apprehensive. I hadn't done anything quite that intense since things got worse in the last few years. The more I thought about it, the more insane it seemed -- here are just a few of the triggers that make me very sick:
Heat (it was 85 degrees in Orlando all week)
Crowds, interacting with strangers
Too much noise
Strong smells or too many combined smells
Eating foods not prepared by me
Eating foods that have been sitting out (or carried) too long
Sun, being outside too long
Plane rides
Vibrations, motion sickness
Large movie screens, bright lights
Standing for long periods of time (ie: in line)
Not being able to nap, rest, sit/recline in comfortable places
Not getting introvert recharge time
Overexertion (we were out for 13+ hours each day)
So, obviously Disney World was a cesspool of potential triggers. I basically decided that I was doomed but I was going to make the best of it and be as prepared as I possibly could be. In the end, I had three amazing days! I honestly don't know how I felt so well, unless it was just adrenaline delaying the inevitable. On the fourth day, I started to crash, but I was able to somewhat keep it together. The last day was pretty miserable, but I was so glad to have had the three amazing days, it was ok with me. I felt like I had completed a marathon.
Here are the tricks that made this trip possible:
1. Benadryl before takeoff
One of my providers recommended taking Benadryl on each flight. Not only are vibrations and stuffy air histamine triggers, but so apparently is changing pressure. So, I popped one before takeoff on each flight, and felt significantly better than I usually do on planes (although still not great).
2. Packable chair
This might be the most important of all my preparations, and quite possibly the best purchase I've made in a long time. We bought this lightweight chair that folds up into a pouch that easily fit in my backpack. I used it a ton. We like to get to the parks early so that we can avoid crowds, but I knew I'd be unable to stand at the entrance for 45 minutes waiting for it to open. Instead, I sat in my chair, quite comfortably, and then packed it up in less than a minute when it was time to run to the Avatar rides (which are awesome, by the way). It came in handy when waiting for rides, snack times, or just finding quiet moments in the shade to recharge. I spent most of Friday slumped in my chair. Another great thing about this chair is that it is curved in such a way that I can actually slouch, which is great on my messed up spine and good for my POTS. (I'm noticing that there are also some with headrests, which would have been amazing for my neck! Here's the whole selection on amazon)
3. Meditation
We arrived Sunday night, expecting that a grocery service had delivered our food to the room so that we could immediately make dinner (knowing I'd be ravenous). Unfortunately, the woman in charge of our groceries was new and got confused partway through, returned all of our items, and went home without communicating any of this. We spent hours waiting, calling, trying to figure out what happened, and eventually went to a Walmart to get food. By 11:00, I was hangry beyond belief but also exhausted, and decided to just go to bed. The food ended up arriving sometime around midnight. Normally, I would have been a hypoglycemic mess and completely freaked out, spiraling myself into a histamine nightmare. I decided instead that I couldn't control it and so the best course of action (in addition to eating all the snacks I had left) was to meditate. It's a tactic I've been using a lot lately when I'm not able to do what I know needs to be done to manage my symptoms. And it's amazing how effective it can be. Sure, food would've been a better fix, but I have actually found that many of my symptoms can be reduced by meditation, leaving me functional enough to problem solve my way into an actual remedy, like making food. I have meditation tracks on my phone (from Insight Timer) and turned to them when needed throughout the week.
4. Food
On a similar note, controlling food as much as possible was HUGE part of the trip's success. We made sure to stay in a room with a kitchen so that I could cook good meals at the beginning and end of each day. I brought tons of snacks to munch on throughout the day, and planned meals at strategic times. We filled out allergy forms in advance for each restaurant. Each time we sat down in a restaurant, they'd send over a chef to get the full scoop. They were really accommodating (although baffled) and I had some truly delicious, satisfying, and beautiful meals. It was the most success I've had at restaurants, possibly ever. For snacks, I brought a lot of nuts (I can eat peanuts and macadamias) and smothered them in Himalayan pink salt, to keep up my blood pressure. I also brought frozen granola bars, apples, rice cakes, and a bag of quick oats to mix with hot water at a coffee shop if needed. I tried to rely on protein and fat to give even energy throughout the day.
5. Shoes and clothing
I talked at length with my PT, about a month prior to the trip, about which shoes would be best. I ended up with some New Balance walking shoes and they were amazing! I am used to over-pronating ankles and lots of foot/knee/hip pain, but it was much better than I'd expected. I also focused a lot on my gait, not hyper-extending my knees, and trying to keep my arches lifted as much as possible. As for clothing, I went for light-weight and breathable, but also covering as much skin as was comfortable, to limit sun exposure. I brought layers so that I was never too hot or too cold (which can be a big deal for me).
6. Disability pass
Many people with EDS and POTS have frustrating experiences trying to get disability accommodations. People don't understand why you might need a wheelchair sometimes but not all the time, or need a disability parking spot, even though at this moment you"look fine." I found none of this at Disney. I went to their office armed with a letter from a doctor and a TSA medical disability accommodation card. They never even asked to see it. They were very sweet and said "of course!" when I asked for a disability fast-pass. Some of the rides had lines longer than an hour (multiple hours in some cases). I experience pain and a whole slew of symptoms when trying to just stand long enough to shower or brush my teeth, so I really needed to not stand in line that long. The disability pass enabled me to go to the ride, check in, and they'd give me a return time. I could then sit, snack, or wander while waiting, and then show up at the appointed time to skip the line. I will admit that my ingrained fear that I've made it all up or it's just in my head made me feel horribly guilty about skipping lines at first. Then I chose to walk in line at some rides that didn't have too long a way, because the art in the line was so amazing. It was moving too fast for my chair, so I had to sit on the floor, lean against walls, bend over to let blood flow to my head... and still barely made it to the ride without giving up. After reaching the Little Mermaid ride close to tears, I decided the pass was deserved.
It was also cool to see how many people were in wheelchairs, and no one seemed to judge them or even give it a second thought. I was even offered a wheelchair at one point. My particular body does better walking (at least for awhile) than being seated too long, but it was good to know that the option was available and widely accepted.
7. Sun protection
This was a duh. Sun makes me sick. So I brought hats, sunglasses, sunblock, and an umbrella to be used as a parasol :-)
8. Spray bottle (with ice)
This also helped tremendously. Heat is one of my biggest triggers. I recently found that, even in times when I don't notice feeling hot, if I remove layers or put an ice pack on my body, my symptoms drastically improve. So, trying to sludge through the FL heat, I had ice packs available when needed, but also spray bottles with cold water to spray down my face, neck, and body as needed. It was immediate relief at times.
9. No shame -- finding quiet places to sit in the shade
This is something I'm learning to do more and more. I used to feel too embarrassed to do the things my body needed. I've learned to just get over the shame and go for it. So yeah, I sat outside of a Star Wars ride, slumped sideways in my chair, under an umbrella, with my eyes closed and noise-canceling ear buds playing a meditation track. And felt no shame.
10. Relish the amazing
I truly believe that the reason I did so well (and likely the reason I crashed so hard afterwards) was because of adrenaline. I allowed myself to get lost in how amazing the trip was, whether spending time with family I rarely get to see, or the beautiful wildlife, or the mechanics and art and detail that make Disney so spectacular. I let myself feel high off of it all, and I think that feeling kept my bucket empty for as long as it could.