Before POTS (Postural Orthostatic Tachycardia Syndrome) changed my life, I loved to travel. Spontaneous trips were a favorite of mine, just picking a location and driving off for a weekend, discovering all this place had to offer once I got there. The most thought that I put into what hotel to stay at was to look for safe parts of town, but I loved to find unique hotels off the beaten path. Flying is a great way to get somewhere fast, but I was partial to the philosophy that the destination is only half the fun, getting there is just as exciting.
However, once POTS came on the scene, traveling even a short distance, became a whole lot more complicated…but not entirely impossible. I have taken a few small trips since becoming disabled, and one big one to the ultimate destination of Disney World, so I thought I would share with my fellow spoonies some of the tips I’ve learned through mistakes, mishaps, and occasional smooth sailing.
It is important to note that everyone is affected differently by their chronic illnesses and/or disabilities, so not all of my tips will work for everyone. I will try to make them as general as possible, but also recognize that some things that are problems for me may not be a problem for you, and vice versa.
1. Bring Someone You Trust
Just to be clear, a disabled or chronically ill person absolutely should be able to travel alone if they so choose. Before POTS, I used to love solo trips. I’m lucky because my fiance is my best friend and I prefer to travel with him anyway, but if I didn’t I know my small amount of traveling would be pretty much impossible. Yes, some of that is due to my specific symptoms and needs, but the majority of it has to do with the lack of accessibility we have in our world. Trying to travel with a disability has only highlighted the accessibility issues we have. We should absolutely keep pushing for more accessibility and to make it easier for disabled people to travel on their own, but while that battle rages on, I think it’s good to know that it will help you a lot to have someone you trust with you on a trip.
I say someone you trust because you need to know that they will be nearby or come when you call them if needed. Knowing that they have your best interest in mind helps as well, since they can serve as another pair of eyes looking out for accessibility or possible triggers around you. And, they are more likely to fight just as hard as you will to make sure that you enjoy the trip as much as they do.
My fiance and I function as a team, and vacationing is no different. In our recent trip to Disney World, it helped me tremendously to know he was there with me and had my back. He pushed me in my chair around the park and could help navigate around large crowds or groups of people, since his perspective allowed him to see more than just other guests butts (not a glamorous view). He could check out a ride to see if I could go on it while I sat in my chair in the shade. He could find foods for me that I could eat at the buffet, an inherently inaccessible way of dining. He knows my symptoms well, so it was like having two of me looking out for my needs, which helped tremendously. So, wherever you go, I highly suggest bringing along someone you know and trust who can help make the trip as spoonie friendly as possible.
2. Plan Ahead but Be Flexible
I know that sounds completely contradictory, but it’s a truth that us spoonies live with daily. Even when just going to a social event in our own town we have to plan for when we take our meds, how much we need, how we’ll get there, how we’ll get back, what happens if we can’t eat any of the food, what happens if I suddenly flare up, on and on. But, we also know that things can change at any moment, so we have to be willing to toss our plans out at some point, or to at least plan room for flexibility.
What does planning ahead entail for a spoonie? Well, obviously it’s different for everyone, but some good general ideas are:
- prescriptions are filled ahead of time
- know how your mobility devices will be transported
- know how you will be transported
- reserve an accessible room at your hotel, if needed
- know where snacks, hydration, and meals will come from or if you’ll have access to them
- make sure your party is aware of your accessibility needs
- know how you can get back to your room should you flare up while out (who will take you? what transportation would be needed? etc)
Having a plan outlined before you depart will help you to optimize your trip. You certainly don’t want to be in the middle of a major flare and trying to coordinate how you’ll get back to your room so that you can rest. Nor do you want to suddenly find yourself in need of a snack, but nowhere near where a snack can be found. And you definitely don’t want to run out of your meds while you are on your vacation!
Along with planning ahead is the research you need to do to help you plan. What do you need to research? Whatever you can! But, most importantly, researching the accessibility of your destination. In doing research for our
upcoming honeymoon, I ran across a couple of beautiful historic hotels I would have loved to stay at, until I discovered that they are not accessible. They absolutely should be, and complaints need to be filed against them, but I’m so glad that I found out now and not after I sank a bunch of money in their establishment and sat through a four hour car ride to get there.
Finding out how accessible a place is isn’t always easy. We’ve certainly gone to places that claim to be accessible and, once we get there, we find out just how limited that access is. Disabled people looking to go to Disney World will read many reviews about how incredibly accessible they are, which is mostly true, however a good portion of their rides require a transfer from a wheelchair to the ride and would be difficult, if not impossible, for certain people. That’s the kind of stuff that is good to know before you pay for an amazing vacation that you may not actually be able to enjoy.
4. Don’t Pack Light
This is another one that could seem a little counter-intuitive. I mean, if you already have to make room for a mobility device, it could be difficult to find room for several bags as well. Yet, I’ve found it to be worth it. Even if we are going on a short day trip out of town, I pack more than I may need just to be sure I’m not caught unawares. Using a backpack instead of a purse has helped me a lot with this venture.
Your specific symptoms and needs will dictate what exactly you need to bring with you. My method of deciding is to think about what I would need for a normal day and what I would need for a bad flare, and then bring both. Extra medications, clothing that I can layer for temperature changes, sunglasses, noise cancelling earmuffs, emergency snacks, heating pads, blankets, OTC medication, and anything else I may think I’ll need depending on the duration of the trip as well as the location. Yes, having extra luggage can be a pain, and often you don’t end up needing half of the things you packed, but I’ve yet to regret over-packing for any trip I’ve gone on. It tends to be the item I think I’ll need the least that I end up using the most.
5. Take Breaks
Maybe this seems like a no-brainer, but I think it’s important to state anyway. Especially when paying money to go on a spectacular vacation, we can feel pressured to try and do it all. Resting is like wasted money, or wasted time where you could be having fun with your loved ones. Yet, taking time to rest is absolutely imperative. If you don’t, your body will eventually decide to force you into taking a break, which will end with you in a full blown flare having to miss out on more than just the vacation.
Plan ahead for breaks, but also know that you may need to take an unscheduled break because our bodies don’t tend to follow our own schedules. I typically plan for resting the night we arrive, to try and recover from the trip there. I also plan only a couple events each day so that we don’t have to rush and can take long breaks in between activities. And, should you end up feeling a flair coming on, go ahead and take a break even if it’s not scheduled. Don’t worry about missing an activity or so. You need to take care of yourself, even on vacation.
6. Remember Murphy’s Law
You know Murphy’s Law, right? The one that says “whatever can go wrong, will go wrong?” It’s an important part of any spoonie’s vacation plans. My first vacation with POTS we never considered staying in an accessible room at the
hotel, or a room on the first floor. I use my wheelchair, I can just use the elevators to get places, it won’t be a problem…until it was. The fire alarm went off one morning leaving us stuck on the 5th floor with only the stairs as an exit (elevators automatically shut down when a fire alarm is on). Matt ran up and down the stairs trying to get the wheelchair down, our daughter, and me. I sat down and scooted down half the stairs. By the time I got to the bottom I was shaking, out of breath, and out of spoons. Since that day, we always ask to either be on the first floor, in an accessible room, or what their plan is to help their disabled guests evacuate in the case of an emergency.
Know your exits, at all times. Know your emergency plans. Know the best way in and out of a place. Know what to do in the event of a flair up, including knowing where the nearest first aid center, urgent care, or hospital are located. It seems negative to approach your vacation plans with the idea of everything going wrong, and chances are good that most things will be fine, but having a plan for “just in case” can prove to be incredibly valuable for you and your loved ones.
7. Share Your Experience and Leave Reviews
You know what would make planning a vacation a lot easier? If every place was really open with their accessibility policies, yet I’ve found that very few are. Many places will mark themselves as fully accessible for you to only find out that their idea of “accessible” is incredibly limited. Unfortunately, because of this, we can’t always rely on a businesses word in deciding if a place is truly accessible or not.
So, how do we find out then? Well, that’s where I ask that every single person with chronic illnesses and/or disabilities tries to speak out about their experiences with a specific place or business. Leave reviews on their sites or on popular travel websites that share your opinion on just how accessible a place may be. Write blog posts, if possible, or even just share on social media (also a good place to leave reviews). I tend to scour the reviews of any particular place for mention of disability accessibility, but often I come up empty handed. When I see one, then I feel more comfortable with my decision to either go or stay away from a particular attraction or business.
Be vocal. Share your stories. Help other spoonies and disabled people find out what business are worthy of their patronage and which ones aren’t. It can make a huge difference in the lives of many people.
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