Traveling Europe with Rheumatoid Arthritis – Lessons Learned

Sometimes you end up in the wrong city in a foreign country.  Like confronting the onset of Rheumatoid Arthritis, each situation requires a new language.  Testing positive for Resilience Factor is a plus.  As I wrote previously for Cure Arthritis, my husband David and I traveled to Paris, fulfilling a dream to travel abroad.  Just as in life, we had loose-knit plans, and were determined to live, laugh, and confront any bumps in the road together.

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After the 9-hour redeye flight, we were surprisingly alert arriving Paris.  The flight caused a good deal of pain and stiffness, but I was eager to greet this romantic city.  At Charles de Gaulle airport, our first task was to navigate to the Paris Metro.  A very kind French woman led us down the stairs, up the stairs, and around to find our transfer.  She spoke only a couple words of English, but her smiles and gestures communicated a beautiful welcome to France.

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The Paris Metro is an artful, historic wonder, but not very disability-friendly.  Traveling a mile or two requires multiple flights of stairs, and the system resembles an ant colony.  Finding the exit is often confusing, as Sortie (Exit) signs were sporadic.  We learned to simply follow the rush of fresh air.  Emerging on a sidewalk in the center of Paris was thrilling.  My hips, shoulders, and hands were in revolt, but I rolled luggage through the narrow maze of Paris streets to the oasis of our hotel.

We visited some of the usual sites, but were just as intrigued by the very texture of life.  Artistic detail is everywhere in France:  architectural, social, and culinary.  There is a constant forward bustle of activity, yet conversely, meals at cafes were protracted affairs, allowing time for conversation and observation.  Cell phones were scarcely observed.  It struck me that Parisians possess a brisk efficiency at the art of life.

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We planned our trip to be pedestrians, relying on the excellent train systems of Europe.  Despite public transportation, I logged as many as 6 miles per day on my Fitbit.  I cannot believe I was physically able to do this, but of course my body rebelled.  Given the difficulty with differing electrical currents, my therapeutic-grade heating pad stayed home.  In its place were menthol heat patches and a large dose of fortitude.  When the latter failed, we attempted to find a heating pad at a pharmacie.  Communication was difficult, and my only option was a hot water bottle.  Charming, but I opted out.  What was incredibly thoughtful is that each pharmacie is clearly marked with the same neon green cross sign.  Instant visibility and access when glancing down a narrow street.

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Waiting in line at historic sites was quite uncomfortable for my hips and ankles.  Still, I focused on the Now.  The Eiffel Tower is a staggering, romantic wonder of engineering, and centuries old cathedrals were alight with stained glass and collective emotion.  Despite strong will, Rheumatoid pain and exhaustion meant I simply had to cross a couple of must-do’s off of my list.  Just as I often do, I found other simple pursuits beautiful and enriching.

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Desiring to see more of Europe, we took advantage of the rail system and journeyed to enchanting Strasbourg and Colmar, France, and to Triberg, Germany, in the heart of the Black Forest.  We left Strasbourg on a pre-dawn regional train, with a transfer in Offenburg, Germany.  Having 5 minutes to transfer and not finding signage, we hurriedly asked a station employee walking past.  He replied, “You have 3 minutes!  It’s the red train!”  That’s when hilarity ensued.

I’m bumbling with luggage, the morning difficulties of RA, and boarded just as the doors on the red train were closing.  David asked two passengers, “Triberg?”  Yes, Triberg they nodded, despite being puzzled by the town’s spelling on our ticket.  Out of breath, we settled on the train and watched the morning mist rise across the rolling farmland of Germany.  Sublime.  Yet all along, I had a growing feeling that we were not on the correct train.  Then we pulled up at the Frieberg station.  Yes, Frieburg, which is pronounced “fry,” where Triberg is pronounced “tree.”  Huge crash course in foreign travel!

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There we were in the wrong town, luggage in hand, and me struggling with pain and stiffness.  So we went for coffee.  We sat and giggled over our predicament, and took the attitude that we’ll get there eventually, or we’ll explore Freiburg.  The clerk at the train station was able to re-route us on a couple of trains to reach Triberg, which is the home of the cuckoo clock.

At last we boarded the correct train, and then the movie scene played out.  The German conductor in spotless uniform and cap viewed our original ticket and queried.  We explained, and were fearful of being financially penalized.  Instead, he dryly replied in precise, but strongly German-accented English, “You did not take the most direct route.”  Lifting his brow, he traced our route in the air with his finger.

Triberg is a tiny, beautiful storybook town in the Black Forest.  The train station is more akin to a bus stop, and was situated about a mile from our little hotel.  Tugging luggage, I walked and rested, walked and rested, along the uphill route.  We checked into the quiet hotel and sat down in the attached cafe for a slice of Black Forest Cake.  The cafe was run by a lady whose manner reminded us of Mrs. Patmore of Downton Abbey.  The decor was straight out of grandma’s parlor in the nineteen-eighties:  brass light fixtures, mauve floral wallpaper, and artificial greenery.  We giggled over our cake when Jimi Hendrix’s All Along the Watchtower wafted through the cafe.  Followed by Frank Zappa.

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The most difficult day for me happened in Triberg.  Having slept on a bed that felt more like a hard box spring, every fiber of my body hurt.  RA seemed to be asking, what the hell are you trying to do??  I felt ill, and incredibly depleted.  However, I had a goal so I hydrated, put on cushioned socks, Birkenstocks, and my Cure Arthritis t-shirt.  The mountainside hike was fairly short, though quite steep.  My clogs were not the best footwear choice, but still are the most reliably comfortable.  I made my way up toward the waterfall, pausing along the way with nature photography.  The Autumn air was crisp, and we overlooked the village with plumes of smoke rising from chimneys below.  I reflected on friends for whom each step is difficult, and was filled with gratitude for my capability.

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Traveling with Rheumatoid Arthritis was made possible thanks to my biologic medication, steroid injections, opioids, fortitude, and adrenalin.  Opting for hotels as old as the 14th century, I balanced thrilling life experience vs. personal safety.  Navigating tiny, awkward bathrooms was difficult.  I also encountered stair railings that were build an age ago for people of shorter stature.  Cobblestones threatened to spill me forward, but I focused on the story they told.  Despite packing a small, capsule wardrobe, I’d do this again with half the items and fewer bottles of supplements and what-ifs.

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The single best decision was pre-paying for hotel breakfast.  I would stiffly navigate down the ancient stairway, and enjoy an array of French delights with fumbling hands.  Cafe Creme was presented with artistic flourish in warmed pitchers.  With a fussy autoimmune appetite, my favorite foods were farm-fresh yogurt and a delectable pastry, Pain au Chocolat.

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The greatest lesson of the style of travel was patience.  One of the tenets of Tibetan Buddhism is the “perfection of Patience.”  I fall so short, but this learning experience has had a profound effect.  Had I not traveled, I would have missed the wisdom of 16th century St. Francis de Sales, who observed, “Nothing is so strong as gentleness; nothing as gentle as real strength.”  As life would have it, St. Francis is the patron saint of writers and journalists.  Isn’t the world simply neato?

Damn It, I’m Going! Traveling with Arthritis

This Autumn I fulfilled a dream of travel, and was honored to have my article posted by the Arthritis National Research Foundation . Thank you for the opportunity to contribute! *******************************************************************************************************

“What if I have a bad day?” I said.
“Then you’ll have a bad day in Paris.”

The man with smiling brown eyes assured me that this longed-for travel was still a good idea. David and I have long talked of a trip abroad. I’ve driven the Alaska Highway, but I’ve never been to Europe. Two years ago, he sprung this birthday surprise on me over lunch. My eyes sprang a leak, and we began dreaming.

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Train map of Europe.

Our plans were delayed a season, and then a year, as my ankles had forgotten their greater purpose. I walked like a duck, and slowly. My hands have a bit of deformity due to rheumatoid arthritis (RA), and I have rotating hot spots of disease activity. So fourteen months ago, I finally agreed to try an injectible biologic drug. Soon my ankles moved more freely, but the pain in my hands, wrists, jaw, ribs, shoulders, toes and hips remained debilitating. Combined with the fatigue and flu-like feeling of autoimmune arthritis (which I affectionately refer to as “Otto”), I doubted my ability to be traveling with arthritis. Working with my rheumatologist, we tweaked our approach of pain medications time and again looking to feel better. As a result, I am enjoying far more functional days. Pain and stiffness are still a constant, but I have learned to separate the experience of pain from the enjoyment of life.

Somewhere between these seasons, I decided: Damn it, I’m going!

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Paris, the City of Light.

Traveling With Arthritis:  Am I Prepared?

I have worked toward increasing my stamina to prepare for traveling with arthritis and the full days of walking and sightseeing that accompany the trip. I began to consciously stay in motion more, whether I felt like it or not. I walk daily, but began to alter the nature of each walk. Different shoes, different terrain, meditation and yoga have all aided as complimentary practices for my body and soul. Shopping for “arthritis friendly” travel shoes, handbags, and coats was painful for my hands and shoulders, but it was still fun! I chose a cross-body bag with security features and a padded strap that feels effortless. Birkenstock clogs will carry me in high style, while well-padded hiking socks should cushion my cranky feet.

As I sit to write, Paris Fashion Week is taking place. Good thing, as I’m set to reveal the LL Bean fall collection and soft bamboo shirts. It does make a girl a bit nervy figuring out what to wear to the fashion capitol of the world. Ultimately, I’m opting for my arthritis friendly comfort wear. I’ll be me, and Paris can be Paris — though I did buy my first silk scarf. Hand-painted.

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Paris Fashion Week

What If I Have a Bad Day?

The bad day I fear is the same one that made me lose 24 hours of travel preparations this week thanks to a sudden migraine. What caused the migraine? Soy, tapioca, grapes, agave? Food allergies have appeared only since the onset of RA and fibromyalgia, causing mouth numbness and full-on migraines with nausea, and light and motion sensitivity. This was what I feared — a complete loss of time. How then could I justify the travel expense?

Our family life has been dictated by chronic conditions. In recent years, my daughter has had surgeries and procedures for her childhood onset spondyloarthritis. Our son at home has Ehlers-Danlos and has gained great strength over Dilated Cardiomyopathy in the last five years. Our newlywed middle son has been coming to terms with the complexities of Ehlers-Danlos as well. Four family members living with chronic disease means time and ability to travel have been precious. Every time I hesitated over the sensibility of this trip, my kids each said, “Mom, just go!”

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Parisian Chic, A Style Guide by Ines de la Fressange with Sophie Gachet

So despite my concerns we plotted our route with the goal of finding the greatest enjoyment balanced with the shortest bit of travel-within-travel time. Otto can rest on the train, while I’ll be the one watching the French countryside with a goofy grin. We are embracing the freedom and challenge of carry-on luggage only. Given the 3-ring-circus that is RA, this is sure to be rather tricky. I’m viewing this experience of traveling with arthritis as a learned art form.

Along with requisite trench coat will be my medications, vitamins and supplements, KT tape for an errant joint, and a mini cooler filled with a weekly toddy of TNF inhibitor. I’ll freshen up with a spritz of Enbrel No. 5.

With that it’s time to check your baggage RA, because damn it, I’m going!