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11 Tips for Traveling With Chronic Pain

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All I’ve ever wanted was to see the world. My mother has a picture of me when I was 4, sitting in one of those big, flowered chairs of the 70s, engrossed in a National Geographic’s pictures of an unknown land. My grandfather, or Chief as I called him, was a merchant marine and would send me items from all over the world while I was growing up. I remember the wooden shoes from Holland I’d clop around in when I played dress-up, accessorized with shiny beads of every color around my neck from New Orleans, where he docked when returning home from the sea. I credit him for igniting my curiosity about the world when I was young.

I wanted to see it all. I looked at National Geographic pictures throughout my childhood and dreamed of being a National Geographic photographer. The thought of such exotic people, languages, and landscapes put my vivid imagination into overdrive.

Erika perusing NatGeo in 1977.

For many years, I dreamed of traveling the world, and when things were tough, I would daydream so deeply on occasion that someone would have to snap me out of it. All my friends traveled. My best friend went to Spain when we were in our 20s. Another friend joined the Peace Corps and ended up in Bolivia, where he met the love of his life.

I always let fear and money, or lack thereof, get in the way. But in September of 2008 at 32 years of age, I got my passport. My intention was to save up and visit my married friends in Dublin, Ireland. I knew it might take a year or so, but I was determined to go.

However, in the fall of that year, I began to tire easily and have intermittent pain everywhere. The pain would move around, from my legs to my back and then my neck. I’d wake up terribly stiff. I went to many doctors and had my blood tested for thyroid disease, adrenaline issues, hormonal issues, and so on. Finally, on December 19, 2008, I was diagnosed with fibromyalgia. I didn’t realize what this diagnosis would mean, but I was resolute to continue to live my life. However, the illness consumed me with pain and grief. It suppressed my ability to fight for quite some time.

Fibromyalgia is believed to be a neurological disorder. It is a condition that doesn’t allow the body to process pain like most people. It can create what fibro (short for fibromyalgia) patients call a “fibro flare” when the body swells and creates pain in different areas of the body, without warning, and in no certain area each time. Sleep and movement are the best ways to prevent a fibro flare. Unfortunately, continuous pain can cause quite a bit more fatigue than one might expect.

After three and a half years of learning how to adjust to living with fibro every day, grieving for the life I once had, and watching foreign films to escape to a country of my choice just to feel as though I was there, I decided it was time to really do it. The timing was good with my work, and my friends that were in Dublin had since moved to Barcelona and were soon to move to Victoria, Canada. (What a life, huh?) I used their moving deadline to motivate me.

I bought a ticket to visit them in Barcelona in mid-May 2012 for a few days, and then I decided to head to Paris for six days on my own. Yes, I was terribly frightened about my strength and ability to cope abroad, but my desire to travel overruled that fear.

According to an article in the Huffington Post, “5 Ways Your Body Changes Before, During And After Travel,” travel is a gift to your body physiologically. More specifically, it can reduce the risk of a heart attack due to stress and can also improve your immune system and blood pressure.

Barcelona was wonderful. My friends lived in a village in the mountains north of Barcelona called Caldes de Montbui. The little mountain town has one of the oldest Roman ruins in Europe, along with thermal baths believed to be curative. I went on a photography jaunt through the village on my third day there. The air was a perfect mix of cool and damp. The cloud cover was gray, blanketing the mountaintops. I watched the farmers in the fields below, reliant on the stream that flowed down from the mountains.

Sleep is important for someone with fibromyalgia, so I was surprised by my easy adjustment to the time difference. Movement also helps, and with the desire to explore, the pain in my legs was bearable. I guess it makes sense as I was so excited to see my dear friends and finally be in one of the places I’d always dreamed of seeing. And adrenaline can temporarily ease pain.

After three days in Barcelona, I flew to Paris. I’d done a ton of research and found a wonderful bed and breakfast on the back side of the hill in Montmartre, Au Sourire de Montmartre (now located near the Eiffel Tower). The family that owned the B&B were of Moroccan descent but had grown up in Northern France, so the mix of French and Moroccan art was breathtaking.

My room on the first floor was extremely cozy. It had boxed insets in the walls with light dimmers accentuating the Moroccan figurines in each and prints by Henri de Toulouse-Lautrec — fitting for the area of Paris where Moulin Rouge is located and where impressionists like Picasso, Monet, and Renoir flourished during the Belle Époque (beautiful era) period. My room also had a new small sink combined with a mini stove, an armoire, a bed that was so plush it was extremely difficult to get out of, and a shower designed as a Hamman! Oh, and the towel warmers! I was in heaven!

The next day around lunchtime, I went to the Marais, in the Fourth Arrondissement and formerly the Jewish Quarter. I sat at a table for two at a corner cafe facing the Place de Vosges. I sipped on a glass of white wine and took in the sights and sounds. I watched as people walked by, imagining what the Marais was like during World War II. I was so happy to be in Paris, but as I walked to the Musee Carnavalet my lower back and legs began to ache.

It was now my fourth day in Europe. As I walked through each room of the museum, each an imitation of a different period in France, my fascination did not distract from the pain creeping up my back and into my shoulders, and my legs felt heavy and like they were on fire. It was time to get back to the B&B which was several Metro stops away.

I stepped outside the museum and it was pouring down rain. To get to the nearest metro stop, I would get soaked and didn’t feel like running, so I stepped into a Jewish market to grab something to make when back at the B&B. I grabbed a couple of items: smoked salmon, baguettes, cream cheese, sparkling water, and a little chocolate. The metro stop was directly across the street, and the rain had let up enough that I could get there without getting drenched.

The train was terribly crowded and loud. Each turn rumbled and screeched, hurting my ears. I found a seat after a stop or two, which eased some of the ache. Montmartre is in the 18th Arrondissement and is on the furthest edge of town, or what Parisians call the Peripherique, and therefore was the second to last stop. I must admit, the train ride was the scariest and most painful moment of the trip for me, but also the most empowering, as I realized I wasn’t cowering in the wake of terrible pain.

I knew when planning my trip that I needed to allow for a day or two of rest. It was never my goal when finally getting across the pond that I see and do everything. It was gratifying enough to just be there, taking in the sights, sounds, and smells, meeting new people, and seeing how the rest of the world lives. (I cried when I first saw the Eiffel Tower light up at night.) And so, the next day I did just that. I rested and I reminded myself that while I was not leaving the B&B, I was still in a B&B in Paris! I opened the windows and let the sounds flow into my room with the light breeze, while I read a mystery that took place in Paris.

In September 2017’s special edition of Time, “Mindfulness: The New Science of Health and Happiness,” Moshe Bar, a neuroscientist and director of the Multidisciplinary Brain Research Center at Bar-Ilan University in Israel, wrote that our brains switch between exploratory and exploitatory modes. When we travel, our brain is in exploratory mode, which means we are open to new experiences and cultures, and have a desire to learn. It also engages our more creative side.

Traveling with chronic pain isn’t always easy, but it is so very worth it. For me, the experience of new places and seeing another part of the world is so invigorating and inspiring. I write, learn, take photographs and am open to new experiences when I travel. I am more present in the moment and less anxious about my future. This makes me feel centered and confident.

A BBC Travel article titled “You’re either an explorer, or you’re not. Which one are you?” describes why people are drawn to travel. It says that when exploring new places, the level of dopamine in the body increases and creates a sense of euphoria. Some risk takers push the boundaries to experience this, but not all have to go to extreme risks when traveling. Since people with fibromyalgia typically have low levels of dopamine in their systems, it makes sense that traveling soothes my aches and pains.

In the September/October issue of Afar magazine, a happiness expert gives tips for planning your best trip. Professor Laurie Santos teaches a new and popular course at Yale titled “Psychology and the Good Life” aimed at helping students live happier lives. She says many Americans tend to overpack their schedules and forget that we miss out on serendipitous experiences in life when we do that. Things like mindfulness, socializing, and slowing down can make for a happier life whether you’re a student, an executive, or even chronically ill. When we travel, we leave our routines at home, and often the state of mind that comes with that. For those who are in chronic pain, new experiences and trying out new behaviors can often lead to relief and fulfillment.

Since my first trip to Europe, I have returned to Paris and been to Dublin and Galway, Doha, Qatar, and London several times, not to mention many places in the U.S. including Dallas, New Orleans, Chicago, Los Angeles, New York City, and Washington, D.C. The power of wanderlust is strong within me — so strong, it overtakes fear and pain. It allows me to accept the imperfections of life and the disappointment of struggling with a chronic illness. The thrill of seeing a new place creates adrenaline and dopamine, which is an excellent treatment for awful pain.

The built-in necessity to be conscious of your body teaches me more awareness of how we can let chronic illness overrun us when at home. It also taught me a lot about self-care and self-love, and that while chronic pain is part of me, it is not all of me. I can still see the world, just with a little more care.

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Here are a few tips for traveling with chronic pain or illness:

1) Get some Biofreeze! It is available on Amazon in 4 oz bottles, so you’ll have to transfer it to a 3 oz bottle to take onto the plane, which you can find at any drugstore. I always have it with me. It may not fully take away the pain, but it eases it for long enough to help you get to where you’re going. It can provide enough relief to switch your brain to something else so you’re not as focused on the pain. Aspercreme or Salon Pas pain patches help as well and can be worn for up to eight hours. (I prefer the fragrance-free Aspercreme.)

2) Take a bottle of water and a granola bar or a piece of fruit with you everywhere. It can add a bit of weight, but it helps to keep you hydrated, which can mitigate the onset of pain and fatigue. The little bit of food can help as well; when you eat you get the blood and metabolism flowing, which can help to ease pain and inflammation.

3) Be sure your accommodations have hot water! Wet heat is best for many kinds of chronic pain. Take a hot shower, or a good soak in the tub if possible, to ease aches and pains and help you to sleep better. (Note: Research the quality of the water at your destination to ensure it is safe for a soaking bath.)

4) Don’t overschedule yourself. Take in the sights and sounds and relish where you are, not all that you have to see.

5) If taking immune-suppressants, ask your doctor before you leave if you can decrease them leading up to and during your trip. This will help you fend off germs from the planes, trains and automobiles you may have to take to get to your destination.

6) Pay a bit extra to take direct routes. This will decrease the energy level you must expend changing planes and rushing through airports.

7) Only pack what you can comfortably carry. I know you’ve heard this before, but for those of us with chronic pain, this is extremely important. I try to take two pairs of shoes, three sets of pants and three blouses that can all be mixed and matched.

8) Carry your meds in a day/night planner and take the most recent print outs that come with your prescriptions in your luggage. That way, if asked, you can show the print outs to customs, which describe the medications in detail. It will also allow you to easily speak to a pharmacist in another country should the need arise. (If on hormones or supplements, be sure you check the laws in the country to which you are traveling. Many do not allow them or have restrictions on them.)

9) Understand your insurance coverage before you depart. This will allow you to be prepared in case of an emergency or necessary trip to a doctor. You might find, given your coverage, that it may be beneficial to you to invest in travel insurance.

10) If necessary, contact the airlines regarding travel assistance. Airlines and airports provide wheelchair escorts for those who find long walks difficult and painful. This is a free service. You can also follow these tips for air travel with a disability.

11) Plan for respites. As discussed, don’t dread the necessary breaks and rests you may need to take. Instead, plan for them. Research cafes to spend the day people-watching. Research your accommodations, as I did, to ensure you have a comfortable room and a magnificent view. This allows you to look forward to your days of rest instead of resisting them.

Bonus tips for extending the pleasure of your trip:

1) Write yourself a postcard or two when you have a wonderful experience. Describe how you feel, what you see, the inspiration you feel, the ideas, the wonder. Then mail it to yourself. You’ll most likely receive it upon your return and by then it’ll be a nice surprise and a reminder of how you felt.

2) If a place or person really touches you, buy a souvenir you can treasure. I’ve purchased a wide array of items like a decorated pill box in Ireland, a blouse in Paris, and my favorite coffee mug from New Orleans. I see the pill box and coffee mug every day, so travel is never far from my mind.

Originally published: September 10, 2019
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