Travelling with AxSpA: How I Plan & Adapt My Trips

I have always enjoyed travelling, and I travelled abroad for the first time when I was 15. It was a student exchange programme, and I stayed at a school in Japan for two weeks. As it was the first time I had packed my own luggage for such a long trip, I ended up packing more clothes and toiletries than I needed.

I remember dragging two big suitcases all the way from the airport to the students’ dormitory, but the exhaustion from the long flight and journey did not dampen my excitement. It was an eye-opening experience for me: spending money in a currency I was not familiar with, embarrassing myself because of the language barrier and cultural differences, and seeing the sky turn dark at 3 p.m. for the first time. Those are memories I will cherish forever.

I started planning my own trips when I started university. One thing I particularly like about planning my trips is that I can tailor them to my preferences. I can enjoy foods that suit my taste, skip attractions I’m not interested in, and have a slow-paced or fully packed day depending on my mood.

Before I had chronic back pain, my trips were mainly about hikes, long walks, and seeing as much as I could. I loved exploring places on foot and was always happy to make a trip more adventurous if it meant saving money or having a memorable experience.

I remember walking for eight hours in Santorini, Greece, just to watch the beautiful sunset in Oia. It never disappoints. On another trip, I slept overnight at the airport just to catch the earliest flight and save money. I also spent a few days working on a farm in exchange for a place to stay. Looking back, I was much more willing to sacrifice comfort for the experience.

Travelling with AxSpA Looks Different Now

Before axial spondyloarthritis (AxSpA), a type of inflammatory arthritis that mainly affects the spine and the joints around the pelvis, planning a trip was very straightforward. It usually revolved around where I wanted to go, how to get there, where to find nice restaurants, and whether I could walk to a particular place.

Travelling now looks different with AxSpA.

There are additional questions I have to consider: How can I get there with the least amount of travelling? How long will I be sitting? How early do I need to get up? And how many stairs will I have to climb?

I even go on Google to check reviews and see whether the beds are firm or soft.

Planning a trip now takes more time and effort. I usually start planning my trips two to three months in advance. I have now passed the age of staying with strangers in a dormitory, but I am not ready to spend a hefty amount on accommodation either.

When looking for accommodation, I always prioritise the location so I don’t end up spending more time and money travelling to and from my accommodation each day. Long travel times can make a trip more tiring for me, and I want to make sure I have enough energy left actually to enjoy where I am.

How I Choose Accommodation

I use multiple booking platforms to compare prices and find the best deals, and I always check the reviews before booking. Two platforms I personally use are Booking.com and Trip.com.

I compare the deals and options available, as well as the prices on the official websites, to make sure I get a good deal. I know that is a lot of work, but it has saved me a lot of money that I can spend on the trip itself.

One thing I particularly like about these platforms is that all the important information is clearly outlined, including how to get there, check-in and check-out times, contact details, and the facilities they offer. They also have loyalty programmes, so I can get special deals on future bookings and earn points that I can redeem later.

A little note: I mention Booking.com and Trip.com because I personally use them and have found them useful when planning my own trips. I am not being paid or sponsored by either company, and I do not currently earn any commission if you book through them. I’m simply sharing them because they are platforms I actually use myself.

Thinking About Transport and Long Journeys

Journeys and means of transport have also become something I look into when planning a trip.

Seats on planes, buses, and trains are generally less comfortable than car seats, especially when I have to remain upright at a 90-degree angle, as this puts pressure on my SI joints. If most of the places I want to visit are far from each other, renting a car would also be a better option than relying solely on public transport, especially when public transport takes significantly longer to reach the destination.

One thing that has helped me during long journeys is making sure I maintain good sitting posture, with my back properly supported. I also try to stretch regularly whenever I have been sitting for a long time.

Travelling is just one of the areas of my life that has changed since I started experiencing recurring pain. I wrote more about this in my post about Living with Recurring Pain: How It Changed My Everyday Life, where I share how pain has affected different parts of my daily life.

I Focus More on Quality Than Quantity

To make my time and money worthwhile during my holidays, I used to squeeze in as many activities as possible and visit as many places as I could.

Those days are now behind me.

My holidays are more relaxing now, and I prioritise my comfort. I list the places I would like to visit and usually limit myself to two or three places a day. If I have a long list, I do some research and shortlist the places I really want to visit. This gives me enough time to enjoy each place without feeling like I have to rush from one attraction to another.

I used to focus on quantity, but my focus has now shifted to quality.

I also factor in the distances between attractions and the journey to and from my accommodation. I check how much walking is required and whether there are any slopes or stairs involved. I make sure I have an easy day after a busy day so I don’t wear myself out.

This has worked very well for me, as it allows me to do the things I like without pushing myself too far.

Having said that, sometimes I can get caught up in the excitement of going on holiday and over-plan without knowing where my limits are.

But that’s okay.

I’m still learning.

What I Do When Back Pain Disrupts My Trip

It is not uncommon to wake up with severe back pain on the second day of my holiday, whether it’s because of a long flight or the firmness of the bed I slept on the night before.

On days like this, I acknowledge the pain and any negative emotions I have. Instead of dwelling on these negative emotions, I try to focus on what I can still enjoy, even if that means deviating from my itinerary.

I allow myself to have a slower morning, sit in a nice café, return to the hotel before dinner, take slow walks in a beautiful park, or even spend some time people-watching.

Slowing down can sometimes help me enjoy the trip even more.

I’ve also learned that changing my plans does not mean I have ruined my holiday. Sometimes I just need to find another way to enjoy the day.

Food Is Still Part of the Fun

Having nice food always makes my day better.

I like researching restaurants that offer local specialities and must-try local dishes. Restaurants recommended by locals are always my go-to!

What I like to do is mark any restaurants I would like to try on Google Maps so I can easily find them when I’m in the area. I sometimes plan my itinerary around the opening hours of these restaurants and make reservations beforehand to avoid disappointment.

I always have a few options in mind in case of an unexpected closure or a long waiting time.

I also include visits to grocery stores or convenience stores in my itinerary, and I love trying out local snacks.

Nothing beats a hot cup of noodle soup on a cold night.

I’m Still Going to Travel

Travelling is still something I really enjoy, and it always teaches me something, whether it’s experiencing something new, trying food I’ve never tried before, spending time with the people I’m travelling with, seeing beautiful places, or meeting new friends.

I may have to see fewer attractions, spend more on convenient accommodation, purchase better seats on public transport, take regular breaks, or have a slower itinerary, but I am not willing to stop travelling.

Sometimes I probably plan too much or underestimate how tired I will be.

But I am finding ways to keep doing something I love.

That is what has changed the most.

I haven’t stopped travelling because of axial spondyloarthritis. I’ve simply had to change what I consider a good trip.

A good trip for me is no longer about how many places I can squeeze into one day or how many kilometres I can walk.

It is about enjoying where I am, eating good food, seeing something beautiful, spending time with the people I love and coming home with happy memories — without completely wearing myself out in the process.

I’m still figuring out how to do that.

And I will never give up travelling.

Lots of love,

Ling