Personally, I have always loved to travel. It’s been a huge passion of mine all my life, as I have always been a bit of wanderer. As a young person, I always dreaded the idea of one job and one house for eternity. While that may be what many view as “the American dream,” I’ve always seen it more as “an American Trap.” My own American dream has been backpacking across Europe, or tent camping my way through the national parks, or touring on a bus. It’s always seemed magical and adventurous. Living on the edge both figuratively and literally (think of a tent on the side of a glacier or the Grand Canyon).
However, traveling with a disability or medical condition can be quite challenging. There are numerous factors you have to account for. Physical limitations may affect what you can do or how you can do it. For me, it’s incredibly important that I can get a good night’s sleep, as my body is incapable of doing so on its own.
Traveling with Narcolepsy
You see, I have narcolepsy. No, I don’t just randomly fall asleep, but I DO struggle to stay awake if my body is thrown out of whack. Prior to my diagnosis, I was convinced that my dream of traveling would never happen, because I just couldn’t get my sleep pattern under control. After years of misdiagnoses and a bunch of trial and error, I finally was put on a treatment that allowed me to regain some normalcy.
Around the same time that my treatment finally started to give me my life back, some really good friends of ours moved from Ohio out to South Dakota. Naturally, we wanted to go visit them! We decided to take our first trip as a family (our boys were between 3-6 years old at the time). This is where my passion and dream for traveling really came back. We were gone for a week just road tripping it. We drove out to Sioux Falls, visited our friends for a couple of days, and decided to keep going afterwards to see Mount Rushmore and the Badlands.
Traveling became my drug of choice – I was hooked! I couldn’t get over this beautiful landscape God made. It was nothing like back home in Ohio. I had never fully realized what the west offers. I went to Grand Canyon as a kid and to Hawaii after high school graduation, but I didn’t truly appreciate them as a kid that I now do as an adult.
But as we were gone, I was constantly on a “go, go, go,” mentality. I had to see it all. After spending all day driving, hiking, and exploring, sleeping on a hotel bed was NOT the most comfortable. By the time we got home from this trip, I crashed for about a week. It was as though my Narcolepsy had regressed. Since it was so draining on me, we decided it would be best if we did one big about every other year. Despite the sheer exhaustion, though, I still LONGED for more travel.
Starting Back at Ground Level
Fast forward a couple more years… After the boys joined the Cub Scouts, we got into tent camping, and decided to keep doing so for family trips. We tackled the Blue Ridge Parkway by driving until we got tired, finding a campground, and pitching our tent. It was affordable (aka CHEAP) enough, and it became a huge adventure. But again, I would come back home with my body was hating me. My sleep was broken and had to take a good month to recover from those trips.
(For those of you keeping track, yes, I’m quite aware that I really need to learn how to pace myself! HAHA).
Not Just My Health, but the WHOLE WORLD’s!
As my body continued to give me strong indicators that I shouldn’t be sleeping on the ground in a tent, the rest of the world was dealing with its own health issues – COVID-19, to be exact. Travel as a whole became increasingly difficult, especially with lockdowns all over the globe. However, we VERY quickly learned during lockdowns that we are NOT homebodies at ALL. Since most hotels and travel destinations were closed anyway, and since my body just wasn’t going to let me continue with tent camping, we decided to invest in a pop up camper (and so did everyone else, apparently!!). Now not only did we not have to worry about gross hotels and not knowing if the beds were comfy, we also weren’t at the mercy of a tent floor. We had our home away from home on wheels we could take pretty much anywhere, and it fit in our garage during the winter! This was answer to everything!!
Well so we thought, anyway, until we made the mistake of hitting Myrtle Beach in the middle July.
The daily temperatures were in the upper 90’s with a heat index that I swear had to be around 147 degrees. Of course, our little pop-up had NO air conditioning, so couple the heat with the humidity, and we spent several enjoyable days at the beach followed by several very uncomfortable nights in our camper. There ALWAYS seemed to be SOMETHING wrong with our traveling. It got so unbearable that we actually forfeited a night at the campground and left a day early just so we could stop halfway and cool off for a night in the Smoky Mountains.
Maybe This Isn’t Going To Work…??
At this point, I once again felt defeated. I started to think the traveling thing must not be in the cards for me. If I’m going to always be miserable whenever I travel, what’s the point of even going?
Before we bought the pop-up, we had actually gotten plane tickets to Orlando and a Disney World package, but COVID put a stop to that within a month of our finalizing our plans. While we got the refund on Disney, we were still stuck with the airline tickets. By the time we had bought the pop-up, we had decided that we wanted to see the Southwestern US, but we didn’t really want to spend half of our trip driving and towing, so we took advantage of having already purchased the plane tickets, had the flight changed from Orlando to Phoenix, and flew out to Arizona in late summer. We decided to take the Disney refund and rent a Class C motorhome through Outdoorsy, and we drove through Utah and all of Arizona.
It was amazing! My hope of traveling was once again restored, as we now had air conditioning, multiple bunks for our boys, and an actual bed for us to sleep in. It even had a bathroom, so I didn’t have to get up in the middle of the night and walk to a bathhouse (or worse, use the portable camping toilet!). We’d found our way to travel without my having to deal with the constant pain and broken sleep pattern.
The only problem was that buying a Class C of our own was just out of the question from a budget standpoint. Those suckers are EXPENSIVE!
Finding Our Home Away From Home
So we came up with a bit of a compromise – we sold the pop-up and purchased a smaller travel trailer. It wasn’t a Class C, but it wasn’t tent or a pop up, either. We still have a full bathroom, kitchen, bunks, queen bed and air conditioning (we even made it back to a beach!). It truly gave me all the things I need to feel as though I’m at home, especially for narcolepsy. I can be comfortable and rest as needed and have my bed that’s at my comfort level to get the sleep I need at the temperature I need to help regulate my body temperature (one of the many things my body can’t do on its own thanks to my condition).
All it took was years of trial and error to find what works and what doesn’t. I can finally have my own American dream to live in van down by the river. Ok, that sounds weird. How about a trailer down by the river? No, still weird. I get to bring my home with me so I can travel, even with my current health issues! Is it perfect? No. There are still times where my fatigue and pain impact me even in the best of circumstances. By and large, though, I am able to continue traveling and doing what I love, even with the occasional setback.
What about you? Are you traveling with (or in spite of) some sort of disability or condition? What kinds of adjustments have you made (if any)? Or are you WANTING to travel, but are afraid that you may not be able to? What might be keeping you from setting out on your own travel dreams?
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