Traveling With AS
Traveling. Sounds like fun, doesn’t it? For those of us with chronic pain, I’d say it’s more stressful than fun.
Before I got sick, the idea of planning a vacation was so fun to me. Now that I have to conserve my energy for basic tasks like washing my face, showering, making food, etc., the idea of sitting at my computer for hours doesn’t sound very appealing to me.
Not only do you have to plan where you want to go, what sites you want to see and what food you want to eat, but you also have to plan for what you can physically do as well. Sometimes you may not even know what your body can handle until you’re in that situation.
For example, I recently went to Portugal, this was my first time leaving the continent, so we planned to see cool things like castles and the ocean. Little did I know, the castles were up very high with a lot of uphill walking that I wasn’t prepared for.
Packing as a sick person means packing every possible thing you could need in case a flare-up happens. For me, I pack my hot pack, Icyhot patches, all possible pills (for anxiety, too), tensor bandages, and lotions. This tends to take up extra space in luggage, but you never know what you might need when you’re far away from home.
The anxiety of traveling
I find that ever since I developed AS, it’s harder for me to handle being away from home for extended periods of time. I was in Portugal for a total of 6 days, and I was extremely homesick. Getting homesick never used to be a problem for me, but something about being so far away from everything that makes me comfortable really takes its toll.
I’m not afraid of airplanes, but with frequent back pain, it’s extremely overwhelming to know that you could be seated on a flight for a long amount of time. Last year I went to New York City on a 12-hour bus ride, which felt like an eternity. Getting mentally prepared for these trips is extremely anxiety-inducing.
Nothing can prepare you for the amount of fatigue you feel while traveling. I thought that the fatigue I experience on a daily basis at home was bad, but I could not have predicted how truly exhausted I became on my trip. I was back at the hostel in bed around 7 pm every night. Not sleeping, but my body needed that rest to be able to function the next day, every day.
Something as simple as just walking around can make you the most tired you’ve ever felt. Bring in the heat, and that calls for a bad mood. I also find that just being out in public, with a lot of exposure to other people and sights and sounds can make me fatigued too. I think that’s why even going to the mall some days is a big deal.
Traveling with ankylosing spondylitis and other people
I understand that it’s very hard for others to comprehend our daily struggles. I get that. But traveling with those who are not ill can create some tension between others. As I mentioned, I was back in the hostel very early every night, so my brother and best friend would go out on their own and come back a few hours later. I’m totally okay with that, just because I can’t do something doesn’t mean that they can’t.
I did have to take frequent breaks, though, when I was out. I tended to sleep in a bit too because my body needed that extra rest, so my brother would go out earlier than us every morning and meet up with us later. The heat tended to really get to me, even though it wasn’t that hot out. I found myself needing to sit or stand in the shade often.
One of the days we took a train to Sintra. Our group happened to be one of the last people on the train, and therefore all of the seats were taken. This was about a 45-minute train ride, and I ended up having to sit on the floor of the train because my legs couldn’t take the standing anymore. A few people gave me looks, but when you’re that tired, you don’t care who sees you.
Take it easy
What I find the most helpful with traveling with AS is knowing your boundaries. Take time for yourself, even if you have to miss out, and make sure that you’re feeling okay.
What are some of your tips for traveling with AS?
Do you use the word disability to describe your AS?