What I Learned While Traveling With Chronic Illness

Last year my partner and I did a month long trip to the U.K. and Ireland. Last time I traveled in Europe and the U.K. was seven years ago, before most of my health issues started, so this trip was a very different experience. I have fibromyalgia, chronic fatigue syndrome, possible POTS, and an extensive list of food intolerances (plus mental health conditions). I wanted to write about and share my experience in case it makes travel seem more possible for others. Here are some tips and things I learned.

Long haul flights

The flight from Australia to London was very long but mostly went well. It was broken up into three eight-hour flights with a chance to walk around a bit in the two stopovers. One of the stopovers was a couple of hours and I was able to lie down horizontally, which really helped.

I made sure to drink lots of water, asking the flight attendants to refill my water bottle when needed. My hips got very sore in the seat so I made sure to get up regularly and stretch a bit. I also wore compression stockings.

I ordered a gluten and dairy-free meal and ate what I could of that. I had also packed a bag of snacks, which turned out to be very useful as I was only able to eat some parts of the meals. I wasn’t able to get much sleep but tried to have some time with my eyes closed.

I had not asked for assistance with getting to the gate, and I was glad I hadn’t as this gave me some walking time to stretch out my muscles. However, the walking distances at some airports were quite long, but just manageable for me at the time.

Scheduling and resting

When booking our trip and planning and participating in activities, I tried to allow space for rest breaks. This was very challenging as I wanted to try and do so many things in the time we had over there. It was very difficult not to compare myself to others or to how much I was able to do last time. While out and about, I made sure to try and find somewhere to lie down or at least sit and rest. It was also important to eat small amounts often and drink lots of water. I worked on finding my own balance, doing things in chunks with rests.

We did a couple of tours and there was mostly a good balance of time sitting on the bus and time up and doing things. The tours packed in more things than I might have chosen to do in a day, but in balance I was not having to drive or plan. I was just able to participate. Part of making sure I was able to continue to participate was going at my own pace, always having snacks and water, and getting good sleep.

Food and supplements

With multiple food intolerances and autoimmune conditions I follow the Autoimmune Protocol (AIP). The food component of this is no dairy, gluten, grains, eggs, nuts, seeds, legumes or nightshade vegetables and adding in bone broths, fermented foods and nutrient density from organ meats and high quality meats and vegetables. Organizing food while traveling was a daunting prospect, as at home we cook in bulk and freeze things and I know where to get the things I need. London was great for organic produce and health food stores, but the further north in the U.K. we went, the less there was.

We made it work with just plain meat and vegetables, cooking most nights and eating out occasionally. My partner was great at helping with the food planning and did all the cooking for me. Almost all of the places we stayed had a kitchen, so we were able to cook. On one of the tours, the bus had a fridge so we could also keep things cold during the day when traveling between hostels. We always carried a small cooler bag that fit into a backpack for food while out during the day.

I don’t take prescription medications, only supplements, and made sure I had enough of a supply to last the trip. I also got my naturopath to write a letter outlining what I was taking, but had no issues.

Accommodation

We mostly stayed in hostels or with family, with a couple of nights in Airbnbs. Staying in dorm rooms in hostels can make it hard to get a good night’s sleep. Smaller four or six-person dorms are of course better than 10+ person dorms. Ensuite rooms were easier, and almost all nights I was able to get a bottom bunk to not have to climb a ladder. Some hostels have private rooms, and we chose this option when the cost was reasonable. It was not an option on one of our tours, so we made sure to book a private room for the night after the tour finished to be able to have our own space.

Stairs at hostels were an issue. I was lucky that I was traveling with my partner who was able to carry my big bag up and down stairs, but just having to walk up and down them after big days of exploring, and multiple times in a day, was really difficult. Often hostels are also in older buildings, and most did not have lifts.

Clothing

I packed for all weather and brought lots of light layers. The weather was a lot warmer than the last time I had traveled ,so I didn’t end up needing most of my warmer clothing. I bought a wheeled bag instead of having a big pack on my back, which was great for wheeling around going place to place, but not so good for going up and down stairs at hostels.

What I’d do differently next time

While the trip mostly went well, there are definitely things I would do differently next time. I am continuing to work on speaking up for my needs, which can be especially important (and also more difficult) when you’re out of your familiar environment and traveling. I didn’t want to be a bother, so I often didn’t speak up even about simple things like asking for extra pillows to be more comfortable at night. Next time I would also call ahead or speak to the tour company about asking for a hostel room on the ground floor where this is possible, or at least on a lower floor to reduce the number of flights of stairs needed to climb.

When on the tours I didn’t, but next time would, let the tour guide know what’s going on for me so they have some understanding and can maybe shift some things around or provide extra support where possible. There were a couple of places where we got caught without a kitchen because there just wasn’t another option, but there was at least still a microwave available. At some hostels the kitchen was closed in the morning, but we didn’t know this until we were there, which made getting food sorted in the morning tricky. So again, calling ahead and checking would have helped.

Next time I would also choose a slightly different time of year to travel so we weren’t traveling in the heat and busyness of peak summer. Another thing would be to really prioritize activities and not over-plan days, leaving space for down time and doing a mix of things.

Positives and negatives of doing a tour

We did two week-long small group tours, one in Scotland and one in Ireland. A big positive was not having to drive as this gave me more energy to participate in the activities. Being on a tour also took out the need for researching routes, activities, accommodation etc. and being able to hand this over to someone who knows the area was great.

There were negatives as well. Tours can be so variable depending on the tour guide and the group of people you’re with. They were often big days with lots to do, not a lot of rest time and fairly short stops that didn’t leave room for doing things at a slower pace. Dealing with a big group of people was also really draining. There were some lovely people but also a lot of weird dynamics and exclusion going on.

Overall, while there were hard bits, I was pleasantly surprised to find that while traveling I was able to do a lot more than I would normally be able to do at home. I was able to enjoy the trip and visit some places I had been really wanting to see. It was great to show myself that travel is still very possible, and I will definitely be doing more.​