My Life with Ehlers-Danlos: Taking EDS on Vacation
May 9, 2016
In just less than a month, I am going to my absolute favorite place on earth- Disney World. I realize most of the people who agree with me are in the 10 and under crowd, but seriously, it’s my favorite place ever.
Joe and I went there on our honeymoon, and I was instantly obsessed. (Fortunately, my husband is just as crazy about The Mouse, so he’s glad to return.) However, as my health deteriorated (Thank you, EDS.), Disney World was one of the losses I mourned. I couldn’t fathom how I would ever handle the heat, the long walks, waiting in line, or the general sensory overload that is Disney World.
If you’re like me, vacation is a rare occurrence. It’s a little scary to make a significant financial investment on a trip and have no clue if your body is going to behave. That was my biggest fear- that I would spend months paying off my Disney vacation and spend the week lying in bed watching the Disney channel in the hotel. Last year, after four years of debating whether my body could handle Disney World, my husband and I decided to try it. It was an experiment of sorts; while I was thrilled to go back and experience our honeymoon destination 3 years later, there were many changes. This year, I’m returning, and I have more experience in dragging chronic illness along with me. I thought I’d share a few tips that I’m hoping will keep me from being bed bound during this year’s vacation.
Assistance is okay.
Disney World, like most vacation destinations, requires a lot of walking. Do you know what I can’t do? Yeah, I can’t handle a daily hike across the happiest place on earth. That’s okay, though. If I take my wheelchair (Her name is Snookie), I can handle distance, lines, and whatever else the Magic Kingdom throws my way. I have considered trying to go on vacation without Snookie, but that would mean I couldn’t see everything and do everything I want to do. Why would I miss out on a fun time with my husband and get less out of my vacation just to save my pride? Right. That’s ridiculous.
It’s okay to get extra help. If that means taking a wheelchair, a walker, a knee brace or any other aid- do it! There’s no shame in trying something new if it has the possibility to make your trip more enjoyable- and your illness less obnoxious.
Comfort is key.
Because my joints dislocate frequently, I’m in a lot of pain on normal days. When I add travel, different mattresses, hours riding in a wheelchair on bumpy pavement, and Florida heat into the equation- I’m going to hurt more than normal. I’m prepared for that, because I can’t completely make it stop. However, I will take every step possible to alleviate the extra stress on my body. A cushion for my wheelchair should absorb some of the bumping. Wearing compression leggings while flying will keep me from feeling as achy and fatigued. A cooling headband (Okay, several cooling headbands to coordinate with different outfits/ Mickey ears . . .) might keep me from having additional heat related symptoms.
These plans aren’t perfect, and they won’t solve every problem. However, my point is that I’m making preparations for as much comfort as possible. Before you travel with EDS or any chronic illness, plan ahead. Anticipate issues and try to outsmart them.
It’s general knowledge at my house that packing makes me a little stressed. (And by stressed, I mean I turn into a crying maniac that eventually packs everything in the house except basic necessities like medicine and Q-Tips.) If I have a packing meltdown every day for week before we leave for vacation, I will be exhausted from the stress before I get there. To avoid that type of angst, I’ve already started doing pre- vacation laundry. (Yes, I’m washing clothes, and no one is allowed to wear them for a month. I realize that’s a little odd.) In about a week, I will set up the suitcase in the guest room and start packing. Anything I can do early will be done early- while I’m calm. I know that when travel anxiety (I get a horrible case of “What ifs” every time I travel) sets it, I won’t be as calm and rational. This is the time prepare. By managing my stress now, I am hopefully preventing an epic meltdown. (I’ll let you know if that works.)
Get over yourself.
That sounds harsh, and I’m sorry for that. It’s possible that I’m the only person in the world who obsesses over what everyone else is thinking. If so, keep scrolling. However, I spent the first day in Disney World last year worried about what other people think. I worried that people didn’t understand why I was in a wheelchair. I worried because children stared at my wheelchair. I worried . . . well, I worried about everything.
What did that accomplish? Nothing. There was a brilliant moment of clarity (when I was feeling sorry for myself because I couldn’t experience the park in the same way I had on my honeymoon), when I realized I need to just get over myself. The truth is that I’m getting to enjoy a fabulous vacation with the love of my life. Nothing else matters. I don’t need anyone else to understand; I have nothing I need to prove. So, if you’re like me and you get a little caught up in perception and how you wish things were- my best advice is enjoy what is in front of you and forget about everything else.
As an advocate for all rare disease and chronic illness patients, I want to be strong and full of life. I’m not simply surviving Ehlers-Danlos Syndrome- I’m living in spite of it.
Look out, Disney World- Here I come, and I’m dragging EDS along with me.
Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.
Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.
Facebook– Facebook Support Group Instagram-| @crazychronictiff
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