I'm sure it won't be a surprise that it's more difficult to travel when you're always sick. I was surprised, though at some of the specific complications. I hope to lay them out for you so you can understand your spoony friends, and then offer up some tips for what helped me cope.
So, this trip had a pretty rocky start. Packing is always tricky, but with a 20kg checked bag limit, I had to make some tough choices. My liquid medications, taken 4x daily, weighed several lbs for the 2+ week trip. Something else had to give. How important is my chair? I bring it whenever I'm worried about not being able to stand long enough for the situation. I didn't want to be stuck in pain or with a POTS flare on my honeymoon. But it does weigh a bit. What about all of the layers of clothing required for helping me maintain an MCAS-friendly temperature? Or the shoes to support my feet in various situations? Or sun hats to keep me from reacting to the sun? Or ice backs and spray bottles that I use on a daily basis in the summer? My heating pad for pain? My neck brace for when it gets too loose? And the list goes on. My gear gets a bit cumbersome at times.
To make matters worse, I was pretty badly ill for two weeks before the trip. School gets really crazy in June, I was planning the entire summer curriculum, and the heat was starting to get to me. I'm sure the stress of planning the trip and getting ready to go didn't help. Whatever the reasons, I had constant migraines, malaise, fatigue, pain, and diarrhea for two weeks. Some days I could barely get out of bed. Other days I was mostly fine -- until I tried to eat, and then it would just come back out. It was exhausting, trying to pack and plan, while simply surviving felt like too much.
The night before the trip, I realized that, thanks to my good friend brain fog, I'd booked my ticket in the wrong name. This is the kind of thing that drives me crazy and terrifies me -- if I can't even trust my brain, how do I stop it from happening? Anyway, I immediately called the airline and got it changed, a mere $350 later. (I was able to send them my marriage license and get it reimbursed).
While I had the airline on the phone, I decided to ask them some health-related questions. For example, sitting on a pillow helps reduce my pain while on the flight, and I wondered if the pillow will fit within their ridiculous luggage guidelines. I also could not eat any of the food provided on the plane, but knew that the amount of food I'd need was not going to fit in the carry-on size that they allow. I called twice, waited on hold for almost three hours total, and was told that I'd need a doctor's note for every medication, the pillow, and the food. Well, I have a doctor's note for my liquid medication, but didn't think that the OTC meds would require anything, and certainly didn't think to have my doctor excuse my pillow or food. At this point, it was the weekend, and I had no way of getting a doctor's note.
To make matters worse, I'd been trying to figure out how to package my bazillion pills so that they wouldn't take up all of the (limited) space in my carry-on. I'd thought I had a really good system, until she told me that all meds need to be in their original packaging. Which I had just thrown away to better pack all of my pills. Freakout #3.
While I was speaking to this woman, she started to ask me questions about why I needed certain things. I briefly explained my illnesses. She broke character for a moment to ask if any of these illnesses affect my quality of life. I replied, "yes, all of them." Her reply was dripping in pity, and then, in a very peppy voice, she ended our conversation with "I hope you have a speedy recovery!" I don't think this would have bothered me quite as much if I hadn't just spend precious hours dealing with the frustration of my situation. I have a TSA medical disability card from my doctor. Then on top of that apparently I needed doctor's notes for everything? I understand needing proof, so that any person couldn't just claim that they really need to break the rules. But it's exhausting and demoralizing to constantly be on the defensive. It means that any time (in work, travel, socializing, or any part of life) I need an accommodation, I have to relive how illness impacts my life. I keep coming back to this piece from The Mighty about disability. Disabilities would not be nearly so restricting if the world didn't push back so much.
Tips for surviving travel
In the past, before having a diagnosis, traveling meant full-body inflammation pain, acute pain in multiple joints (and likely spine) from subluxations, migraines, malaise, fatigue, diarrhea, chills/hot flashes... all the while trying to have fun, interact with people, and get from one place to another.
Since the diagnoses, I've learned how to soften the blow when I travel!
For starters, Benedryl is my best friend. I obviously can't take it before driving, but if I'm going to be a passenger in a car, bus, train, or plane, I pop a Bene right before the trip. If I'm flying, I take one before both takeoff and landing, since I've been told the change in pressure and vibration can mess with mast cells.
Bringing my own food -- I used to eat food at airports and then have diarrhea the whole flight. Eating my own foods solves that problem! It's a pain to lug around all of my chips, nuts, matzah, and rice cakes, but it's worth it. I actually used to think that traveling made me hungry -- now that I'm not getting the runs, it turns out I can get away with relatively little food!
Sleep -- this may seem obvious, but sleeping is the best way to overcome the damage I'm doing when I travel. So, I let myself sleep more than 8 hours, even if that feels excessive.
Be prepared -- I try to get as many stressors taken care of ahead of time as possible. The smoother things go day of, the better I'll feel. I had a detailed itinerary broken down by every leg of the journey printed and on my phone. Brain fog from traveling? No problem! Just follow the itinerary's instructions :-)
Meditation is a game-changer -- I had trouble taking meditation seriously for a long time. It just seemed like another one of those self-help things that wasn't going to work for me. You know, like "eat more turmeric and your pain will go away!" or "ginger will fix your nausea!" (ginger makes me sick) or "yoga will fix everything!" (yoga ruined my joints)... but meditation has actually made a huge difference for me. I think a lot of it is just lying down and letting my body tell me what it needs. When my POTS is bad, simply the act of being horizontal (I always meditate lying down) is helpful. But the focus on breathing and body scanning can help with tachycardia, migraines, anxiety, and even pain. I meditated at least once most days on our trip. And I felt wildly better every time!
Planned rest time -- because of my need to obsessively plan (see #4), I make sure to plan in some rest time. I think I didn't do enough resting this trip, and wouldn't have crashed as soon if I'd done a better job. Every time we took a day of rest, I felt loads better the next day.
I'm sure there are more factors in why I'm able to travel better now than a year or two ago, so I will continue updating this as I think of more.