Lessons I've Learned Traveling Abroad With A Chronic Illness
I've been traveling for many years, and I've learned a lot along the way.
In the winter of 2018, I attended a wedding in Scotland and then traveled through Prague and Vienna. Winter travel means being on high alert when it comes to ankylosing spondylitis pain and fatigue. Between the walking, the cold (it always makes it worse, doesn't it?), and the unforgiving and teeny-tiny plane seats, pain is essentially inevitable. So I was armed with a plan, and I learned a few things along the way.
Timing is everything
Winter travel is beautiful — but the cold doesn't help stiff joints.
In chilly Prague, we had a giant drafty window in our bedroom. I made sure to have extra snuggly pajamas in tow so that I could stay extra warm. I notice that when I sleep cold, I wake up extra stiff — which would mean I'd be slow to get out the door on a day when we are touring a city as a group.
I also carried a few Aspercreme Warming Patches with me; these were great for when I got unbearably sore and could barely walk. Sometimes, half the battle is bucking up and moving forward despite the pain (especially when you've paid money to travel), and even the smallest little aid in that can help.
At night, I showered under hot water after I stretched. I'm a fan of these moves for AS.
Take a seat when necessary, push when it feels okay
One night, we walked through Vienna for hours. Weaving in and out of the Christmas markets, we drank gluehwein (cheap mulled wine that came in little Santa mugs), my body started giving out. Standing became increasingly harder, and the fatigue started to set in. I didn't want to go back to our Airbnb when everyone wanted to tour the Natural History Museum, so I told my group that it was totally okay for them to wander around without me.
I found that being transparent helps. For one, it lets people go on without feeling badly for me. Two, it makes it so I don't have to keep up! So as they peered into glass boxes at glimmering gems and minerals, I sat on little velvet benches that lined the room. It's not the happiest feeling ever, but when you need to sit, you need to sit.
At one point, I sat on the floor and just rested. It was totally glorious.
Bring good shoes
In Southern Italy, the often very steep and cobblestones streets and stairs are wonderfully romantic...and difficult to traverse. The same is the case in other European cities, where winding little streets are unpaved and meander up and down hillsides. If you're not feeling well, this can be really hard. There's often very little accessibility, as well. In the Amalfi Coast, for example, every little street is adorned in tiny stairs and uphill walks. I felt privileged to visit, but I recognize it's not for everyone.
If you're up for it, good shoes are a must. There were some days where I stupidly wore sandals while in Italy, but for the most part I brought a solid pair of sneakers (usually white to match with anything!) with good support. This limited the impact on my spine as I took those thousands of steps, and cushioned each step just a bit better than a cute (but oh so deadly) pair of sandals or wedges.
Prepare ahead of time
In the end, you've got to take care of you. If you're on a cramped airplane, be sure you have your pills, patches, and creams handy. It means getting up and stretching whenever you can. If your neighbor gets up, take advantage of it. Stretch. Walk the aisles. Head to the back of the plane and do some gentle movements. As someone who has taken several eight or nine-hour flights each year for the past ten years, movement is key.
But most of all, have fun. Try to live in the moment. Self-care is key.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?