Wow, it’s been a while since I’ve written anything here! The last few months have been pretty busy between being diagnosed with POTS at the end of May, starting a new medication in June, and then going on three different trips with family and/or friends over the summer (and getting a cold shortly after getting back from the last one which drew out the travel recovery). I’ll write more later about how I treat and manage my POTS as I continue figuring it out with my doctors (also keeping me busy and away from the blog), but for now I want to share some tips and tricks I used while traveling to balance participating in activities and controlling my symptoms. As I already admitted, I did get a cold when it was all done, so I probably could have paced myself a bit better. On the other hand, I made it through all the trips without bringing on too bad of a symptom flare, so I call it a win!
Let me start by saying this: Your mileage may vary. Obviously my chronic illness may not be the same as yours, and even if it is we likely experience it differently. You know your body, abilities, and needs infinitely better than I do, so please take what is helpful and leave the rest.
Having a chronic illness can be tricky even when you are home with your routine and all of your supplies are easily accessible. Travel can complicate managing a chronic illness, and having a chronic illness can complicate traveling. However, there are several things you can do to make these two things more compatible. As someone who loved to travel before my health got so complicated, I definitely intend to keep it up to some degree or another going forward. As I do, I’m sure I will learn more and more about how to travel without overexerting myself, but for now, I’ll start with these general tips and tricks for traveling with a chronic illness:
1. Try not to overbook yourself
This summer I went on three week-long trips while being home for about a week and a half between them. Having a week on each trip meant I had more time to rest during the trip instead of trying to cram things into a shorter time frame, like a weekend, and the week-and-a-half breaks at home gave me the time I needed to rest and get ready for the next trip. This is obviously easier said than done, and I definitely would have benefited from having both more time on the trips and at home, but this schedule was manageable for me. You know your limits better than anyone else, so try to plan trips in lengths you can manage and that ideally give you time to do the things you want to do while also spacing them out with adequate time to rest. This also includes leaving yourself plenty of time for layovers when you have connecting flights!
2. Don’t be afraid to use mobility/wheelchair assistance at the airport
I started doing this over a year ago when I was traveling during a symptom flare for an urgent family trip, but now I do it whenever I fly. Yes, I could technically probably make it through a trip without it, but I would likely feel awful by the end and would need at least a day or two to recover. With the wheelchair assistance I can get through the travel days with more or less the usual amount of post-travel weariness, and isn’t that what accessibility is really about?
It is best to let the airline know you’ll need mobility assistance when you buy your ticket (there is often a box you can check somewhere in the process), but you can also call the airline’s accessibility department and request it later. If you don’t request it ahead of time and do it at the airport, you’re more likely to have to wait a while for one to be available if they don’t know ahead of time that you’re coming. It does not cost anything extra, and you can specify the level of assistance you need. I check off the box that says I need help with long distances which has meant that an attendant with a wheelchair meets me near the check-in counter (I either request it when I drop off my checked bag or ask an airline employee in the area), takes me through security (I walk through the machines rather than get patted down in the chair), stops at any water fountain/restroom/food I may need, and then drops me off at the gate. You can also get help going down the jet bridge to the plane and/or getting on the plane, but I skip these since they are a little more complicated and that amount of walking is okay for me. So far no one has questioned me about needing a chair, even with the brief bits of standing and walking, but I generally try to mentally prepare for it just in case. Some days I almost want someone to ask so I can use it to advocate and spread awareness of invisible illnesses/disabilities, but usually I don’t feel like it and hope everyone minds their own business.
3. Pack light, but be thorough
A smaller and lighter bag will be easier to manage, but you don’t want to not have something that would make the trip more pleasant or tolerable for you (e.g., eye mask, ear plugs, noise-cancelling headphones, compression, etc.). Even if you will be checking a bag (getting all the liquids to fit in the carry-on limits is definitely a challenge I don’t always feel like dealing with), a smaller bag will still be easier to manage getting to and from the airport and in the place where you’re staying. BUT if there are things that you need that will make the trip significantly better for you and they aren’t too cumbersome, bring them.
Bonus baggage tip: I probably don’t have to point it out since most luggage these days is wheeled, but yeah…wheeled suitcases are generally a lot less effort to transport than things like backpacks or duffel bags. I’m still undecided on whether I prefer the 2-wheeled or 4-wheeled suitcases though. Of course, if you’ll be somewhere with cobblestones or not a lot of elevators then a good, sturdy backpack might be more appropriate.
4. Don’t forget about medications and medical supplies
A few weeks before you leave, make sure you have enough of each medication/supplement to get you through the end of your trip plus some extra for when you get home. Order refills if needed, and if you have restrictions on how often you order refills of a medication, talking to the pharmacy about why you need more sooner will most likely result in them letting you pick it up early. It is also generally best to bring the medications in the original bottles so it is clear what everything is (check local regulations as this is sometimes required), and to keep them in your carry-on luggage in case your checked baggage gets lost. Bringing extra is probably also a good idea in case you experience travel delays. If there is anything else you need in terms of medical supplies, bring it along. Most of the time medical equipment won’t count towards the carry-on baggage limits, but this is also worth checking local regulations about. If you need something on your trip that is too bulky to bring along…
5. You can rent wheelchairs and other medical equipment
On one of the trips I decided to look into renting a wheelchair and a shower chair, and it was great! Most cities have medical supply companies that do rentals, and they have all sorts of equipment available. I was able to have everything dropped off and picked up from my hotel for an extra fee, and having them meant that I could sit in the shower like I do at home and have the wheelchair (which I don’t normally use) available if needed. As it turned out I ended up using the wheelchair a lot! There were several times that I would have stayed at the hotel while other folks did things that involved more walking and/or standing, but this way I could go along and have someone push me in the chair. I even got pretty good at maneuvering my way around inside stores so I could shop without having to stand up the whole time! There were several wheelchair options available from the company I used, including electric scooters, and the prices weren’t too bad especially with the discounts they offered for longer rentals.
What about you? Have you done any traveling since developing a chronic illness? What tips and/or questions do you have?
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