11 Oct Damn it, I’m going! | Traveling with Arthritis
“What if I have a bad day?” I said.
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.
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!
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.
But still, 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!”
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!