Traveling While Chronically Ill

Traveling While Chronically Ill

by Kristin Wagner

I am packing for Alaska now, and each item I put into a suitcase reminds me that I have to plan for the inevitability that at some point on this trip, my body or my mind will fail me.

This trip was supposed to happen last year. We wanted to go to Alaska last summer, but we didn’t. The reason sounds spoiled and selfish when I explain “Well, we didn’t have quite enough frequent flier points to fly first class, so we waited another year,” but I really struggled with being okay with flying six and a half hours without guaranteed food, without a guaranteed bathroom, without space to stretch. I have chronic illnesses and I can only push myself so far before I collapse.

I have fibromyalgia, hypoglycemia, hypothyroidism, chronic hives, allergies and a dairy sensitivity. Navigating all these issues is difficult in normal everyday life. It is already like walking a tightrope to manage to stay upright and functioning. Traveling anywhere increases the odds that I’ll slip off that tightrope and not have my normal safety net ready to catch me.

It happened when we went to Puerto Rico two years ago. A four and a half hour flight with barely any food left me feeling sick, so sick in fact that my body cramped and lurched in the hustle of a 90 degree airport and I nearly passed out when we finally stopped and ate. On that same trip, which I do recall happily as one of my favorites, I threw up one meal where I was assured there wasn’t any dairy (but I’m pretty sure there was), and had to turn around on a rainforest hike because I felt like I couldn’t breathe from anxiety and humid air. I spent a lot of afternoons recovering from busy mornings.

Last year, in Wisconsin, I had to take an impromptu walk when my muscles cramped up so painfully I was going to get a migraine. A few nights I had to prepare and drink a protein shake in the middle of the night because my blood sugar went too low.

Three years ago in Kentucky I was up in the middle of the night crying softly in the bathroom because my body hurt so much, and I didn’t want to wake anyone else up.

My motto going into any trip is definitely be prepared. It might sound unpleasant or upsetting, but I prepare by imagining the different ways things can go wrong, and knowing that I’ll need to have the tools and resources on hand to fix what went wrong.

I keep my prescriptions medications, glucose meter and supplements in my carry-on bag. I cannot afford to lose these items. Also in the carry-on will be a 12-pack of dairy-free protein bars that can act as meal replacements or a quick fix for low blood sugar in an emergency. Some of my few precious fluid ounces will be my Flonase, a nasal spray that helps with my allergies.

One of our large suitcases holds winter jackets, gloves and hats. Some parts of Alaska we’ll visit will be in the fifties and rainy, and my body cramps up wildly when the temperature drops too quickly.

My ergonomic pillow will also be in that bag, so that I don’t wake up with back spasms each morning unable to sightsee.

One bag will contain our guidebooks, guidebooks where I have researched which restaurants near our hotel will have a diverse enough menu that I have a chance of finding dairy-free food. Often, if you do a search with the city’s name and “allergen-friendly” or “dairy-free” you will get tips from locals that help. I have a grocery list and the address of the nearest Anchorage Target ready for when we land so that I can get enough non-perishable snacks to last me on a 12 hour bus tour of Denali and a 6 hour glacier tour out of Seward (lunch will be provided, but of course it all has dairy and if I go too long without eating at all I might pass out).

I bought seasickness bands for all of us because we’ve never been on the open ocean and I can’t handle being sick for 6 hours at a time.

We have backpacks, but I have to make sure I don’t overload mine, or my shoulders will cramp.

I can’t wear flip-flops anywhere where we will have to walk a long time, because my legs will cramp and my feet won’t uncurl.

I need to have ibuprofen available at all times, because even a storm rolling in can push me into severe pain (believe me, I have been checking the weather obsessively).

I will bring make-up because there will be times I get very sick, and I don’t want to look very sick in our vacation pictures forever and ever.

I will bring my notebook with all of our information everywhere we go, because when I feel sick sometimes my brain goes foggy. I can’t remember simple words, nor can I figure out how to navigate my normal life much less a brand new environment.

Knowing my brain is unreliable is scary, and then my anxiety kicks in making it even harder to take care of myself and small children. But our day-to-day life is built on routines we have crafted carefully over time, and we carry them with us as much as we can. My boys have always been expected to do independently what they are capable of, so that I do not have more than I can handle put on my shoulders and I do not put more on them than is reasonable. Those routines and expectations help ground us even in unfamiliar situations, even when my brain is more unreliable than usual,  and reduce anxiety for both me and them… which sometimes is half the battle.

And, in the midst of all this preparing I take the time to prepare myself for the emotional setbacks that could happen. I will probably feel very sick at some point. I make sure I really understand that. Journaling about my concerns and expectations before I step out my front door is vital. In writing, I ask myself what I most want to get out of this travel experience, and what I will be most upset about if plans fall through.

This is a tool I find helpful for totally healthy people, too, as everyone has highly unrealistic expectations placed on vacations. We are supposed to be more adventurous than usual, more active than usual, and perpetually blissful—a tall order.

Once I have asked myself what my expectations really are, and answered honestly, I have prioritized what is most important and am willing to let go of the tourist activities that “everyone should do” that are not as important for me personally.

Talking with my husband and children (or any other traveling companions) about limitations we may come across is often the next step. Managing their expectations of me helps—just as my kids have learned they can’t buy every sweet in a candy shop, they’ve learned that they cannot have every last thing they want, even on vacation. I can’t go all day every day at a theme park, for example. I then coach myself on the importance of asking for help when I need it, of being kind to myself instead of angry at my body for what it cannot do, of grieving if something goes wrong and I can’t help but feel disappointed, knowing that it is okay to feel sad. My husband has been so helpful with this over the years—he reminds me of these things when I forget. He makes sure I really believe that he wants to help, that he wants to be there with me, and he knows how frustrating it can all be.

The last thing on the checklist is often letting whoever I’m traveling with know that I appreciate all that they do to make this possible for all of us.

All in all it sounds as if traveling might be more trouble than it is worth. It isn’t. Your world expands every time you go somewhere you’ve never been. Possibilities open up in front of you that you might have never imagined. With chronic illnesses sometimes our worlds, out of necessity, become smaller so we can manage to make it from one day to the next. We need to feel that our lives are not always limited to our bedrooms.

And, chronic illness has taught me that anything you want in life, anything really worth having, is going to take work.

Puerto Rico was amazing and tropical.

Wisconsin gave me time when I could just enjoy being with my kids without nagging them about cleaning up toys or doing homework.

Kentucky gave me a chance to see family I love dearly and wouldn’t get to otherwise.

And Alaska? I have never had the chance to see anything like it. I don’t live near mountains, or the ocean, or moose or bears or glaciers or whales. I might never get the chance to see these things again. I want to see my kids’ faces light up when they touch a glacier, and my husband’s eyes widen when he sees an orca. I want to feel the weight of a fishing pole as my son hooks a salmon. I want to smell salt-spray. I want a chance to see the tallest mountain on our continent.

I want to prove for myself that the trouble, the pain that goes into everyday life, and the pain and trouble of reaching for the extraordinary is always worth it.

Vacations are like my marathons. This one just took an extra year of preparation.


Kristin Wagner is a mother and former high school teacher from the Chicagoland area who writes creative non-fiction, most often drawing on motherhood, food, pop culture and chronic illness. She has been published at Full Grown People, The Rumpus and The Manifest-Station among other online literary magazines. Currently, she is working on a memoir about what life is like with invisible illnesses. She posts regularly at kristindemarcowagner.com, can be found on Twitter as @kcdemarcowagner and on Facebook as Kristin DeMarco Wagner.

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