How I Travel with Invisible Illness

Overlooking Avalanche Lake at Glacier National Park

To start off with, I want to recognize that invisible illnesses look different in a variety of ways for all those impacted.  My story here will be about what helps me and things I have learned over time.  I know not everyone will be able to do what I can, as I am still relatively “able bodied” – but I hope that some readers can take bits and pieces to either incorporate into their lives and travel or use my words as inspiration to discover their own helps.

I love being outside.  I have always loved it.  When I was younger, carefree, and completely able bodied, I spent summers living in canvas tents at Girl Scout camps – tents where you could roll up the sides and just have your bunk and the open air.  Like, waking up in the middle of the night and watching a bobcat walk through your tent group open air.  I’ve loved white water rafting, cave exploring, rock climbing, backpacking, and lots of other adventures.  I have slowed down over the years, but we have worked hard to ensure I can still enjoy the outdoors and have my best shot at being active as long as I can.

When we started homeschooling our kids, we utilized the Every Kid Outdoors annual pass for the National Parks System to visit several states and National Parks.  This is a FREE annual pass available to every fourth grader in the United States, and available to 9–10-year-old homeschooling students if you don’t follow specific “grades” in your homeschooling program.  I had started my recovery from the big health blow up (you can read more about that here, but if you’re new, I got really sick and could not keep food or drinks down, lost a ton of weight, and was concerned I was going to lose my life). I had figured out eating gluten and dairy free at that point, as well as most of my Low Fodmap restrictions.  Our first trip was from NC to Montana for Glacier National Park as the farthest away point.  Our second trip was out west again, but a more southernly route going to the Grand Canyon and the Great Salt Lake as our farthest points.  The trips involved a mix of hotels and tent camping nights.  Our second trip was cut short, as we had planned more camping in Colorado, but we arrived to snow on May 25, after starting the trip in 105-degree weather in Texas.  We also had our 5-month-old puppy with us on that trip.  Was it worth it to tent camp in Yellowstone National Park and get to hear the bull elk calling out?  Yes.  Would I want to be on the ground (with some remaining snow from the first snowfall of the year) again?  Not at all.

Badlands National Park

Montezuma's Well

Yellowstone National Park

Photos from Badlands National Park, Montezuma's Well, and Yellowstone National Park

Planning ahead was a big part of getting to take those trips.  I searched for the few safe fast-food spots I knew at the time and had a list of their locations along our projected routes.  Grocery stores were researched ahead of time to look for safe brands for gluten free and dairy free things I needed.  We had a cooler for our first trip, which worked well enough – but with all the altitude changes, we lost the longer-term cooling capabilities we experienced when camping locally at home – and upgraded to a truck bed refrigerator for our second trip.  Meals and snacks were planned ahead of time as much as possible.  Just before we started these trips, I found BelliWelli bars, so I took several boxes with me. (To be clear, that is an affiliate link! Feel free to search for the company on your own if you don’t like using affiliate links, but every purchase with my link is appreciated to help support my blog and my family!).  Having these planned out ahead of time helped to reduce my anxiety.

Another thing we decided would help me feel comfortable on the trips was having a travel toilet and a privacy tent in case my digestive issues came into play when we were away from a populated area.  I also researched and found apps like iExit and Rest Stops Ahead to know where the closest stopping place would be if we were close to civilization.  These can help you find restrooms as well as more advanced stops with food options. 

Following our second trip, we decided to start looking into other accommodation options besides tents and hotels.  We eventually found the Opus Air Canopy brand of campers and thought that was the right fit for us.  The camper has a low profile similar to a traditional pop-up, which significantly reduces the drag and extra motion from towing (a big consideration, as I am easily prone to motion sickness!)  We opted for the OP4, which has two beds and the sitting area, a pull-out kitchen on the outside (with a sink, four burner stove top, and small preparation area) and a shower on the outside as well.  We added options including the annex space, solar power, and will soon be adding a water filtration system so we can have longer term off grid camping to visit more areas of the country as we continue to explore.  My husband has also done some upgrades on his own to help us utilize the space better or easier for my needs.  Having the OP4 allows us to stop nearly anywhere to eat (as long as we can find parking), we have 40 gallons of water with us for cooking and showering, and we can camp either in campgrounds with electrical and water hook ups or in Bureau of Land Management (BLM) wilderness areas approved for boondocking (or camping on open land without any modern conveniences). 

Our dog Finn overlooking the Grand Canyon

To help ease my anxiety further, I have also changed the way we prepare before trips.  We have a packing list we keep on an app shared between myself and my husband.  We utilize packing cubes and start several days in advance, so we can slowly pack, and I can check and double check as needed.  Now that our boys are older, I use our homeschooling dry erase board easel and write lists of what they need on it.  I put the easel outside of their rooms and have them check off what they pack, then I go back and double check (learned this after not checking once and having to buy clothes on a trip… oops!) My husband and I also have cubes we use for longer trips.  We have specific containers we put bathroom necessities in, so we know where those items are if we have a quick need.  If we are going to have quick one night stops on our way to a specific location, we will pack all the items for that one night in a single bag to not unpack everything for the camper. I also check for laundry facilities along our path to keep our packing down to a minimum.

We have labelled food containers, we take our favorite recipes with us and have things like spices premixed in tiny Tupperware containers for meals like our favorite Low Fodmap Chicken Tikka Masala from Rachel Pauls Food.  We don’t only have super easy meals like hamburgers and hot dogs while camping, we have full meals like we would at home many nights! We are a bit extra and even have a second refrigerator/freezer so we now have one in the camper and one in the truck bed for longer trips, or we can leave one at home for shorter trips.  And we have a small oven that will cook on our propane cook top from the camper for muffins and cakes.  While it seems like a lot, our recent two-week trip to New England and Canada was perfect when it came to food availability!  It also gives us flexibility, as we can simply stop on the side of the road if we really need to for a meal.

Inside the truck, we keep snacks, a Tupperware cereal container that we have turned into a travel trash can, and storage liners on the back of the front seats so that the boys can easily access their phones and tablets, chargers, books, coloring, schoolwork if we take it along with us, and other toys they bring to help occupy the time while driving.  I have a printed itinerary to give us an idea of what we’re doing when (which is just a rough idea when we leave, it is typically ever changing as we go), to remind us of which trails are dog friendly, and to let us know which parks have Junior Ranger and Bark Ranger programs.  Campground reservation information and any other pre-paid event notes are there as well, because we have experienced hotels and other locations “losing” our reservations or saying we have not included dogs on our reservation before, so anything to back us up to make sure we have the best chance of actually staying where we planned helps to hopefully avoid  a repeat of frantically driving around to try to find another place to stay at midnight in Arkansas.  (Ask me which is the one state I don’t ever want to go to again if I don’t have to… because I have a very clear answer since the two places that kept our money there refused to ever return it even after the BBB and state Attorney General were contacted and video proof of us being turned away and told that we wouldn’t be getting a refund were offered.)

All in all, we have to “do” a lot, but we actually have it down pat now, so it really seems extremely simple for us to pack and get ready for trips.  The last two trips, my husband and I have had to double check that we really don’t have to do anything else because it is all just second nature now.  We’re loving our travels, we are looking forward to future travels as long as this works for us, and we have begun a list of what we might need to look for in future options when my mobility becomes an issue.