Wednesday, June 27, 2018

Traveling While Chronically Ill

Wherever you go, you take yourself with you.
~Neil Gaiman

A guest post for Wellness Wednesday by my friend Tanita Davis:

photo by Tanita Davis

Milady of Maladies: Traveling

It’s officially summertime in the Northern Hemisphere, and the tradition of so many in the Americas is to pack up and hie off to parts cooler whilst a great heat settles onto our green and formerly pleasant land. This is a great plan if you have a.) time, b.) means, and c.) the wherewithal to get out of bed once you get there.

I don’t always have that last one. Since November I’ve been trying to understand what my diagnosis of scleromyositis, a so-called “overlap syndrome” autoimmune disorder, was going to mean for my life. It’s been a challenge, over the last eight months learning to eat well, sleep well, and live well with a body that, with varying degrees of hostility, seemed to fight my efforts. This month, I had the opportunity to discover what it was like traveling with an autoimmune.

I was determined that since we’d finally scraped up the money for a trip that I wasn’t going to be a problem when Tech Boy and I went to the medieval city of Delft, The Netherlands, this past May. (It was an amazing trip, and for some commentary, check out a few of our rather blather-y blog posts, including the unexpected eight-and-a-half-hour layover on our trip home.) We took precautions – I upped my walking time gradually over the weeks before we left, to get into condition. We paid out a little extra for the flight, and sat in an Emergency Exit row, because the additional leg room was crucial not only for Tech Boy’s lanky limbs but for my often swollen and aching hip, knee, and ankle joints. (However! I was still confident I could wrench up that door and help people to safety. I wouldn’t have been in that row without that confidence.) We packed my meds in my carryon, and we packed our own plane food. We also chose to rent an apartment for our time in the Netherlands, because though there’s no particular diet that’s going to “cure” an autoimmune disorder, we’ve found I’m generally healthier when I’m in charge of my own nutrition.

For the most part, things were good. The newness of castles and canals kept me going for a while, even with the unseasonable heat in Europe at the end of May, I managed to get around to see and do almost everything I wanted to. However, I made a few mistakes – one was forgetting a huge sun hat. Many autoimmune disorders come with rashes and skin conditions which are exacerbated by sun exposure – don’t forget your hat, or even an umbrella/parasol thing.

Another mistake I made was not scheduling in down time, preferring to run until my engine was running on fumes... and that isn’t something I’d do again.

Schedule rest. Schedule rest days. It’s much wiser to acknowledge that you do need accommodation, you will need downtime, and that there’s nothing wrong with it. This will prevent you feeling guilty for “wasting” time sitting or lying down and “trapping” everyone into having to slow to your schedule. Scheduling days where you and your family do separate things is the best idea. Or, better yet, scheduling daily downtime where you literally put your feet up for two or three hours is a much better option than driving yourself ‘til your tires go flat.

And, of course, for that downtime? Yeah, yeah, we all have our phones and our movies, but don’t forget your books!

Books which are immersive and bring new worlds to life are some of the best options for travel – whether you’re having downtime, or in need of a mental vacation. Here are a few of my favorites immersive travel books in the fantasy genre. I hope you get a chance to read some of these books which describe faraway places, beautiful (and slightly chaotic) scenery, and immersive, subversive social mores:

THE GOBLIN EMPEROR by Katherine Addison
PALADIN OF SOULS, Lois McMaster Bujold

Happy Travels, Friends!


Addendum from Tabatha...

* Tips for Traveling with a Chronic Illness
* Traveling with IBS
* Tips for Being Prepared When Lupus Follows You on Vacation


HWY said...

A very heartening note from Tanita. It's important to realize that she went on that trip even though she has that condition. Hooray for her.

Her advice is excellent...good ideas for anyone traveling, in fact.

tanita✿davis said...