Traveling With Chronic Illness

As I learn how to live with chronic illness, new limitations are teaching me how to be more intentional and creative with travel. In the process, my travel experiences have become more rewarding than ever before.

Old Habits

Not so long ago, I traveled very differently than I do today.  Perhaps this will sound familiar to you.  My trips were relatively short and infrequent.  A typical American work environment does not provide many vacation days and often they are spent for illness or family time.  My travel goal was to see and do as much as possible in the limited time available.  When time is short and costs are high, there is a sense with each trip and destination that you may never have the opportunity to visit this place again.  My thinking was that if I was going to make the most of my visit, I should fill my day with as many activities as possible, see as many sights as possible, and develop a rigorous itinerary to ensure that nothing was missed.

 

This kind of travel can come with a cost.  In addition to the travel between my home and the destination, there was a lot of travel and logistics once I arrived.  I was moving between cities, frequently changing hotels, and arranging transportation.  Tight schedules meant less flexibility, and less flexibility meant more expense.  It could also be quite stressful.  My travel experiences, even in idyllic and tranquil settings, were seldom relaxing.  There were compromises.  If I only had only a precious few days in Europe, it was difficult to prioritize something like a leisurely European meal spanning multiple hours and courses instead of visiting landmarks like the Eiffel Tower or the Louvre.  And there just wasn’t enough time to do both.

My travel days used to be filled with destinations and activities.

As someone with a love of cities and urban life, my travel used to involve walking as much as possible, all day long.  If two destinations were a few miles apart and there was an interesting neighborhood in between, I would walk between them, soaking up even more “experiences” with the limited time available.  Sometimes, tight schedules meant that I only had time for walking – perhaps a brief stroll around a train station during a layover on the way to my next destination.  Often, a scenic hike or city tour was not a means of travel but an activity all its own.  I commonly walked eight or ten or twelve hours a day when I was traveling.

 

While my travel has always included a lot of walking outdoors, it also used to include many indoor activities – dining in restaurants, exploring famous museums and castles, attending shows, and more.  Often, these are activities that require you to spend money.  With so many activities like this packed into a short trip, on top of hotel and transportation costs, the cost of travel added up quickly.

 

I enjoyed my trips immensely.  They inspired and nourished me, exposed me to new ideas and experiences, and helped me to grow as a person.  But that type of travel doesn’t work for me anymore.  I can’t physically do it.  Thankfully, I have discovered that doesn’t mean my traveling days are over. Instead, I have to be more intentional and creative about how I visit and explore other places. 

New Challenges

Today, I suffer from long covid and chronic fatigue.  I experience a multitude of symptoms that flare with even moderate physical or mental exertion.  These symptoms include fatigue, weakness, aches and pains, brain fog, and much more.  Without dwelling on all of my various ailments, my new condition has dramatically changed what I can do, and in many ways changed who I am.  I dive into these changes a little bit more in another story.  These days, a full itinerary for me might be putting away the dishes and walking around the block.  Some days I can manage more.  If I don’t carefully pace myself, I might spend days housebound or even bedbound while I recover.

 

This new reality also affects how I can travel.  The physical act of travel – moving from one place to another – takes more effort and energy than we sometimes realize.  I can no longer fill my days with multiple destinations and activities.  I can no longer walk for hours and hours on end.  I can no longer be dismissive of how I eat or where I rest.  I can no longer push through stressful or tiring situations and expect to quickly rebound.  And even if I do everything right, I still need a lot of time to recover.  Rest and downtime are necessities in all aspects of my life now, and that’s especially true when I travel.  Some activities that I used to enjoy very much are just impossible now.

 

But I am learning, slowly, how to adapt.  In the process, I am discovering that with a new approach travel has become more rewarding and enjoyable than ever before.  I understand that everyone is in a different place, with different needs, challenges, and goals.  Below are a few lessons I have learned along the way that helped me and might help others.

Safe Travels

One of my travel challenges with chronic illness is that it is now much easier for me to get sick, and the consequences of getting sick are much higher than they used to be.  Almost all travel involves risk, and that is especially true with international travel where there are no alternatives to spending long hours in enclosed spaces with crowds of people.  

Sometimes there is no avoiding crowded indoor spaces while traveling.

In The Air Out There I share some of my observations about staying safe in planes, trains, buses, and public spaces en route to my eventual destination.  My first lesson from traveling with chronic illness is that having a good travel experience depends on arriving as healthy as possible.  The stresses of travel strain the body and while traveling we often push ourselves beyond our normal limits.  There’s little chance for me to accomplish anything during my travels if I get sick on the way.  Even people without chronic illness do not want their once-in-a-lifetime travel memories marred by some sickness that could be easily prevented.

Less is More

Doing less can give you more.  This is the big one.  It’s a complete reversal of how I used to travel, and I only truly learned and understood the benefits once I was forced by necessity.  Now when I travel, I try to do only one activity per day.   If it’s a big activity that takes a lot of time and energy, I will plan for a rest day after. 

This might seem quite restrictive, and maybe even extreme.  So how did I get to this point?  For someone with long covid or chronic fatigue, pacing is life.    Whether you describe it as staying within your “energy envelope” or saving your “spoons,” managing exertion when you are feeling better is essential to avoid getting worse.  Too much exertion in a day can cause a crash that takes days or weeks to recover.  During travel, one day of doing too much can potentially ruin the rest of the trip.  So from a purely practical perspective, doing fewer activities per day means I have enough energy to keep going the next day.  With careful pacing, this approach means I can do more activities over the course of the entire trip.  Of course, most people don’t face my physical limitations when they travel, so what’s the benefit?  I embraced this downscaling of my travel itinerary out of necessity, but as I started to practice it, I discovered that it was actually providing me with a better travel experience. 

 

I got more from a place when I could take my time and immerse myself at a slower pace – people watching, learning the rhythms of the city, seeing places from different perspectives, in different lights, at different times of day.  Taking my time with an activity or destination let me get closer and more familiar with the people and places I was visiting.  I found that I had time to explore, without agenda or purpose.  Where does this charming passage lead?  What is inside this quirky shop?  I no longer had the stress and worry about train schedules or missed ferries.  I traveled when I wanted, ate when I wanted, visited what I wanted, and other than making sure not to miss the last train of the day, my days were wide open.

A balcony with a view can make even a rest day a memorable experience.

As my activities spread out, my experiences became slower and more meaningful.  But the extra elbow room in my itinerary also made space for more restful beginnings and endings.  In the mornings I could sleep until I was ready, without worry of getting behind schedule and begin the day as refreshed as possible.  Later in the day, there was time to return to the hotel or apartment and reflect, re-nest, and if I was up for it, perhaps watch local television, read local news, or learn more about something I discovered during the day.  These peripheral experiences added a depth and richness to my travel that I was too busy and tired to appreciate before.

 

Rest days were another revelation.  I planned for them and expected them, so when I took them it did not feel like I was robbing myself of precious vacation experiences.  On some rest days, my partner would explore on their own, or run errands or do shopping.  These little trips provide their own glimpse into everyday life in a foreign place that can be a rewarding travel experience in its own right.  On a rest day I might sit on a balcony and watch the clouds play and move against the distant mountains.  I might perch near a window and watch the pedestrians and cyclists on the street below.  Or I might take a blanket to a park and nap, listening with my eyes closed to the sounds of daily life around me, immersed in a foreign language I can sometimes engage and decipher, if I feel up to it.  These activities are more relaxing than the type of travel I used to do, but I think they are also more fulfilling as well.  I visit fewer cities and sites than before, but I experience and appreciate much more about where I am.

Longer Trips

A “less is more” approach to travel can be very rewarding, but it does take some planning to accommodate.  I think it works best if you can take longer trips.  That is easier said than done, of course, but it is possible, even for people with limited vacation and constrained budgets.  My next lesson from traveling with chronic illness is that longer trips are more feasible than you might imagine.

 

Initially, my motivation for taking longer trips was to accommodate the physical limitations of my chronic illness.  With a longer trip, I could spread the various activities of a shorter vacation between more days, and provide more time to rest in between.  A longer trip also offers more flexibility to manage unpredictable circumstances.  For me, that includes never really knowing ahead of time what I will be physically capable of doing on a given day.  For everyone, longer trips offer a travel flexibility that is very useful in order to plan around weather events, transportation delays, and all kinds of surprises that can disrupt our carefully planned travel agendas.  Longer trips also give more space for spontaneity.  When each travel day is not filled with plans, you can spend extra time in a place that intrigued or surprised you.  You can revisit a destination that you especially enjoyed.  Or you can discover new activities and destinations along your travels that you never anticipated or planned for at all.  My physical limitations forced me to consider longer trips, but I understand now that I should have been traveling this way all along.

 

Lodging on longer trips

Lodging can be expensive, but you can often find major discounts for longer duration stays.  Renting an apartment for a month can be less expensive than staying in a nice hotel for a week.  Despite the lower cost per night, you can often find more space and amenities like a kitchen and laundry that make longer stays easier.  So in terms of lodging expenses, I have learned that longer term stays can be budget neutral.

 

Working vacations on longer trips

What about vacation days?  For most Americans they are in short supply, and often used for health, errands, and family obligations.  A silver lining of the pandemic is the increased flexibility of remote work.  It’s not really practical or desirable to work during a typical vacation.  The days are full of activities and travel, and the goal is often to get away from the daily routine.  But when you reorient your travel agenda so that there is one activity a day, or sometimes no activities, then it becomes more practical to keep up with remote work during travel.

Longer trips with fewer activities make remote work more feasible during travel.

My partner, who does not have long covid or fatigue, was able to spend mornings and early afternoons sightseeing, and work a full day from mid-afternoon into the evening while in Europe.  They did use some vacation days, but they were spread out strategically to match our travel agenda.  A month in Europe required only a week of vacation days, and provided ample time for relaxation, travel activities, and work productivity.

 

Even for someone like me, with limited capacity, it was very manageable to spend a few hours a day for travel activities, a few hours for work, and retain most hours of most days for resting.  All of this is possible by rethinking our travel agenda with a longer trip and ensuring that the days are not packed with activities.

 

Eating on longer trips

We are eating every day, whether or not we are traveling.  During travel that often involves eating out at restaurants.  That’s an expense that adds up quickly, and for a longer trip can present a significant cost.  On top of that, there are reasons during a pandemic to avoid crowded indoor spaces where you must be unmasked.  But there are ways around these challenges that enhance rather than detract from the travel experience. 

Buying food at the local market can be less expensive and more interesting than eating out.

My partner and I have very much enjoyed buying and cooking local foods.  Visiting a grocery store seems mundane, but it’s kind of fun to explore the different products and packaging of a foreign country, and to learn a little bit about local cuisine in the process.  Even better if you can shop at a local market.  On market days, we were not only were we able to discover all variety of amazing local food offerings, but also engage with the social and cultural personality of our temporary home.  Visiting the biweekly market not as a novelty but actually in search of the grocery items we needed for the following days allowed us to slip briefly into a different pattern of urban life in a way that would not have been possible if we only visited restaurants. 

 

Shopping for the food is only half the equation.  That’s why picnics have become a mainstay of our longer trips.  This doesn’t feel like a sacrifice in the slightest.  The combination of delicious market delicacies and stunning scenery is a perfect pairing.  Of course, sometimes you simply want a local chef to prepare the local specialty.  Thankfully we discovered that, in general, the number of outdoor dining options has grown greatly since the pandemic, including choices of all types and qualities.

Scalable Outings

In the old days, I think I subconsciously treated travel activities like discrete blocks.  You could rearrange these blocks of activities in your schedule.  You could choose to add a block or remove it.  But each activity was a self-contained and indivisible unit.  Activity 1: Take the train, Activity 2: Walk in the garden.  Activity 3: Visit the museum.  Activity 4: Dine at a restaurant.  In terms of my trip planning, it was very binary.  Either I did the activity or I did not.

 

When I travel with chronic illness, my body does not always cooperate with my plans and schedules.  This requires patience and flexibility, but it is also an incentive to rethink travel activities.  Each day can be a roll of the dice in terms of health and capacity.  That means I now plan my days to accommodate both best-case and worst-case scenarios.  To accomplish that, I try to find activities that can scale according to how well I am feeling and how much energy I have.  For example, I might plan for a three-mile walking tour of a city if I am feeling well.  But I will start the walk in a place where, if my symptoms flare, I can stop after one mile or a half mile and still be able to see and enjoy something of interest.  I might plan for an afternoon in the park that can scale back to an hour or two if I need rest.  A best-case day may include two or three stops on a train ride to see sights along the way.  But if I’m not feeling well, I can skip stops as needed.  I might visit only one wing of a museum instead of the entire grounds if I am not feeling my best.

I didn't have to visit every wing of this chateau to find a memorable experience.

These types of scalable outings offer me a way to enjoy traveling even when chronic illness keeps me from feeling my best.  But they also make for a more flexible and less stressful travel experience in general.  The ability to adapt my activities and respond to unforeseen circumstances helps me to make the most of the time and energy available to me.

Breaks and Benches

Sometimes you just need to take a little break.  There is a lot of nuance between going full speed and resting in bed.  In the same way that spreading out activities and incorporating rest days helps me respect my physical constraints over the course of an entire trip, I have learned how frequent stops and rests during activities can help sustain me during the day.  Sometimes this is as simple as making a commitment to rest periodically.  But sometimes it takes a little bit of planning.  I don’t want to run out of energy in a situation where I have no choice but to keep going – stuck in a rowboat in the middle of a lake, rushing back to the station to catch a train, misjudging a walk and straying too far from home. 

If you plan it right, these lounge chairs will be waiting to help you rest, even in the middle of a public plaza.

Now when I head out for the day, my urban planning habits find outlet by plotting ahead for where to rest.  I am more thoughtful about routes that allow me to stop when I need to.  I have even mapped out ahead of time pleasant or pretty places to sit and rest.   I have developed a profound appreciation for good public sitting.  I don’t organize a dozen activities per day anymore, but there is still a satisfaction in a well-planned outing that lets me comfortably rest, east, or stop when I need to.

Destinations Before the Journey

When I used to travel, I did not realize how I was arranging my activities into a particular travel narrative.  I would subconsciously plan my day to reward effort with experience.  A scenic view atop a mountain was the reward for the effort of a strenuous hike.  Dinner in a lively plaza was the reward for a train journey to reach the town.  The tranquility of a picturesque village was the reward for the effort of rowing across a lake to reach it.  The thrill of a roller coaster was the reward for the effort of waiting in line.  I’m not sure why I contrived my travel activities in this way.  Maybe I thought experiences would be more meaningful if they were not easily attained.  I suspect that this kind of subconscious narrative planning is fairly common.

Let the gondola do the work getting to the top and enjoy the view guilt free.

The problem with this type of travel for someone like me with chronic illness is that the effort to reach the ultimate destination may take all the energy I have for the day.  Putting the most interesting experiences at the end of my day like some kind of fireworks finale meant that more likely than not I would miss them altogether.  But there is no travel rule that requires things to be this way.  Now, instead of hiking to a mountain peak, I might take a gondola to the summit, and if I have energy take a leisurely stroll down after.  I might visit a castle or cathedral first when I visit a town, and then if I have energy stroll through the old town after. 

 

When I travel now, I make an effort to cognitively separate the destination from the journey, and I give myself permission to enjoy experiences that come easily.  These two strategies have helped me ensure that the precious energy I have is spent on the activities I most want to experience.

Sometimes You Can’t Fix It

My final lesson about traveling with chronic illness is one that I have found very difficult to internalize.  Sometimes things won’t work out.  Sometimes you can’t find a clever trick or mindset to get around your new barriers and limitations.  Even if you do everything right, sometimes your body will still let you down and punish you.  This does not represent a failure to plan or prepare.  It is not a reflection on your behavior or your quality as a person or an indication of what you do or not deserve.  Over the past few years, I have had to learn how to be generous and forgiving to myself when I fail to meet my plans and expectations.  I have had no choice but to accept that some things that used to be possible are no longer possible.  This acceptance can only be found on the far side of a gauntlet of grief and loss and anger, and is not easily held once gained.  But is a necessary step in order to find hope again in the world around us, and by extension to find joy in travel.

The hike to this alpine meadow that I visited a decade ago is too high, too far, and too strenuous for me to attempt anymore.

I think it’s also worth mentioning here my story about virtual travel.  In this story I discuss how I learned to enjoy travel experiences even when my illness kept me housebound and bedridden.  When my physical body could not take me away to new experiences, when my brain could not tolerate bringing new experiences near to me with reading, watching television, listening to music, or even holding a conversation, virtual travel experiences returned the world to me. 

 

These are some personal lessons I have learned, but of course there is no one right way to travel.  I would love to hear the ways you have been thinking about how you travel, and any tips or strategies that have worked for you!

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