Friday, August 10, 2012

How We Roll: Travel and Chronic Illness

For the next edition of Patients for a Moment, Duncan Cross asks how we roll with chronic illness. Since I’ve made two fairly long car trips in the past couple months, travel is a timely topic for me.

When I read the prompt, I couldn’t help but pull up a post from the vault, this entry from July of 2006 that captured my most humiliating experience ever. Click on over for the gory details, but it involves airline inconsistency, public disclosure of personal health details, an insensitive bully, a whole lot of red-faced shouting, and The Vest, my expensive and unwieldy piece of medical equipment. Good times.

Aside from traveling to see family, we don’t really have a chance to travel much. In fact, a five-day trip this spring was the first real true vacation we’ve had in years. We haven’t had the time—and haven’t made the time, I suppose. But beyond that, I end up having to cancel things at the last minute often, which makes me hesitant to plan too far ahead. I end up paying a steep price whenever I do make a trip, even a short overnight for a conference or a meeting. Inevitably, I catch something from being on the airplane, and it takes weeks, sometimes months, to clear my system.

So, given that airline travel makes me sick, and my hesitancy to purchase the ever-expensive plane tickets too far in advance, when we do need to be somewhere, we’ve started driving. (Unless it is just too far and too short or a trip, or we find a great deal on tickets, and it’s not cold/flu season, etc.) We have family in Michigan, so years of 12-hour drives have helped condition me. We can control how long we’re on the road, we can stop if we need to, and we honestly, we really love the chance to just chat. Sometimes we’re several states in before we even turn on the music.

By now, we know which rest areas have viable food options for me, as gluten-free food is tough to find on the road. We know which hotels take dogs, which routes have the best views, and the best spots to fill up on gas.

I’ve learned to keep my “regular” meds in my purse in the front so I can reach them easily. We pack tons of water and low-sugar drinks, and I’ve started bring a cooler of healthy snacks—balanced nutrition bars, trail mix, yogurt, etc. That way, if the (scant) salad offerings are more meager than usual, I know I have something to eat that is gluten-free and has protein. I keep my brain fog in mind when we divvy up the driving.

(And for the toddler? Lots of books, snacks, and a mini DVD player she watches Baby Signing Time and Sesame Street on. She can turn it on and off, rewind/fast forward, and change the volume on her own, which makes the process pretty painless. So far, we’ve been really luck she rolls so easily and without complaint.)

Of course I do fly and take the train at times, but taking travel into my own terms (and staying healthier for it) has made a big difference.


Nikki said...

I really loved reading this- I just got back from a road trip from Mayo Clinic, one that will become more frequent as I too have the perks of a rare disease. The timing of reading your post was way too perfect! I can so relate- packing gluten free and dairy free snacks, learning the restaurants... packing the carnival of requires a lot of planning! Makes me feel like less of a dork that I'm not the only one!

Debbie said...

We finally purchased an auto cooler that connects to the power supply and has a converter to plug in the wall. I am gluten, egg and dairy intolerant, making it very hard to travel without 'my' food.

Barbara Kivowitz said...

It does take such planning and attention to details. do you find that once you do that planning, you can enjoy the trip?

Joey said...

Loved this post. I joke to friends that I've become the gluten free master of the road. The yelp app has been my ultimate crutch.

I know this my be ad nauseum for you, but just in case not: for airline travels, opting to take a wheelchair & splurging for a portable oxygen concentrate how not only alleviated my concerns about the thin-air-up-there, but also catching infections left and right.

Just wanted to echo Barbara's comment: with all your ducks in your row, I hope you're able to enjoy the trip! Having someone drive for me definitely helps with the hyperventilation (jk, or not) & smell the roses a bit.

Powered by blogger. Customized by PinkDezine.