Can You Enjoy A Vacation, Despite Chronic Illness?

The Vacation Illusion

For most people, packing takes less than an hour, the airport is a loud but easily manageable overstimulation, and a new bed is just a new adventure in a faraway land. For the chronically ill, it's a totally different world. Rushing to get packing done the day before takes me literally all day due to the necessary mini pharmacy, the airport is an absolute sensory nightmare, and a new bed is a whole set of new aches and pains that compound upon themselves each morning you wake in it.

Here is how our family trip to the beach in 2012 played out, with 1 chronically ill person:

Leigha* tumbles out of bed, eager to make the long drive to Corpus Christi and take the Selena Quintanilla tour. It's our first vacation as our own little family unit, and a sense of pride flitters through the air - palpable, tangible. "1.2.3.1.2.3. click click click. 1.2.3.1.2.3. click click click. The door handle is going to loosen and fall off one of these days from the ritualistic abuse of my twisting. My husband emerges from the house holding a holy grail of snacks, chipper and ready to go. A few overfilled suitcases are tossed in and secured, followed by the snacks, and finally, myself.

I pull the car door shut, and we take off; we're running late, as usual. What even IS time, anyway? God, I'm already dripping with sweat; gotta turn that air up. Why is it so LOW?! And who moved my fan setup 2 centimeters?!

And that's just the first few moments of being in the car. We hadn't even started driving yet! One thing is certain: People who are chronically ill, like myself, might be going on a vacation, but we aren't really experiencing any less pain; we're just experiencing it in another part of the world. Whether by boat, car, train, or plane...I will always carry it with me, woefully ensnared by its presence amongst even the most thrilling of situations.

The Ever-Present Plus One

I may not want to take my illnesses with me, but uh...I don't exactly get a choice here. So, I have to adjust and make myself as comfortable as possible, and hope I don't run into any trouble - but stay prepared, just in case.

It's in the synapses of my nerves, the fiber of my being, the betrayal by my own personal vessel. I grew this thing myself once they cut the cord! Seriously, though, this pain isn't something I can sleep, rest, or even wish away. It's something I will taxi alongside me for my entire life.

• Preparatory Tax - time spent researching the most accessible attractions, as well as the nearest Urgent Care and hospital, just in case.
  • My motto: You can never be too prepared - unless you go overboard and quite literally pack your entire closet
• The Post-Travel Hangover - If you're anything like me, after you've traveled, you end up getting sick as a dog. It's the inevitable flare-up after activity.
• Energy Budget - Sometimes, a morning event - yes, even a short one - can mean spending the rest of the afternoon holed up in bed nursing whatever body parts are causing the most trouble.

What Can a "Getaway" Be, Realistically, For Us?

Because we know all too well that pain doesn't take a vacation when we do, as much as I wish it did, how can we make the best of the time we get with our families? I know exactly how much it sucks to be left on the sidelines for everything because you just can't. I know how it feels to have to return to the hotel for rest while everyone else continues the party like they're 21 again. It's not fair, but it is the hand we were given, and it's what we do with it that shows our character.

Because we have been together for nearly two decades, my husband and I can tell when the other person is in pain just by watching their gait. We know the walk of one another so well that we can instantly sense the bad poker gait. This means he knows what should be my limits, as well as how much further I will typically take it to make sure everyone keeps enjoying the activity for as long as they'd like - I am a glutton for punishment, what else can I say?

For this reason, future trips will have daily limitations. I don't want to keep pushing myself so far that I am either useless for half the trip, useless the entire way home...or both!

• Just because the pain doesn't stop when we get to our destination, that doesn't mean we have to be miserable the entire trip!
• Limiting daily activities can help space things out for you and keep you from causing yourself more stress and anguish by trying to fit a million things in one day, then doing that for several more.
• If you're going on, say, a 5 day trip to Orlando, Florida, and you want to see all the big theme parks and everything within them...If that's what you set out to do, you will likely:
  • A. Not make it without collapsing in the middle of the walkway at some point
  • B. Get to go into all of the parks, but not see much of any of them
  • C. Get into one park, and leave disappointed
  • D. Both A and B OR both B and C
• So, instead of going through several different parks each day, pick one park per day. You may not get to see everything this trip, but you can spend a leisurely day wandering around a park all day, every day. What's not to love? Just make sure you bring some emergency painkillers.

How You Should Be Traveling

If you're running around like a chicken with its head cut off, you're doing it wrong. There is no reason to stress that much over packing for a few days away from home, even with small children in tow. You just need to tailor your itinerary to your accommodation needs. For example, I would likely have to be in my wheelchair if my family and I went to a large event, so I would need to prep to arrange necessary accommodations well before arriving.

If you're worried about "bumming out" the rest of the group because you aren't holding up, and need to rest, you shouldn't be. I'm officially in my "I don't give a fuck" era, and you should be, too. If the people around you cannot make some simple changes to make you more comfortable without feeling totally inconvenienced, they probably aren't worth being around to begin with. So, here's my advice that, once again, no one asked for:

• Don't return to work the day after getting home: Give yourself a day to rest and recover before trying to expend energy you don't even have. I have always called it a "buffer," but you can call it whatever you'd like!
• Easy as Pie Itinerary: Don't schedule more than ONE activity each day, and make sure even it is flexible, just in case. A lot of places will do several shows back to back, so that everyone gets a chance to watch. Take advantage of that wiggle room!
• Make a Grab Bag: Stuff this motherfucker with all of your essentials for comfort and relief; medications, lotions, rubs, creams, good pillows/my pillows, a heating pad, blanket, & any other odds and ends you deem important enough to be your carry-on, if you fly.

I hope the checklist is helpful, as well as these basic changes that just might make your next vacation travel time a little smoother and more bearable. Have a wonderful summer if we share seasons; wishing you safe and happy travels! 💜

Are you traveling this summer? Did you already go? What's your absolute MUST HAVE for every single trip, as in you would die if you forgot it? Let me know in the comments below!

• For me, I guess it would have to be my medications - all of them. 👀 Is that illegal? Feels illegal. In my defense, it's quite dangerous to go cold turkey on a majority of my scripts. 🤷🏼‍♀️😝