Traveling with Chronic Illness

Whether you're traveling for fun, for family, or for treatment, chronic illness has a way of making it especially difficult. It can be especially disheartening when you take a vacation, only to realize you can't take a vacay from chronic illness. I recently took a trip to Washington D.C. with my grandmother and my boyfriend, something I was excited about until my grandmother decided to drive instead of fly at the very last minute.

Every illness is different, they all have their own unique complications and roadblocks. You are all aware at this point that I have some form of EDS or HSD, POTS, Asthma, and what is likely gastroparesis. For me, a two day car ride is hell. Every slight bump in the road runs the risk of jostling a hip or knee out of socket, being crammed into a tight space for hours on end leads to stiff muscles and slow but painful blood pooling, and no matter how I try to sit that stiff car seat will always lead to pinched nerves. My grandmother is a smoker and the last person my asthmatic lungs needs to be around. She ozoned the car to get rid of the smoke, but she didn't seem to understand that I can't be in close proximity to a lit cigarette at all when she smoked less than a yard away from the car (or the entrances to restaurants, rest stops, and gas stations) and exposed me to the smoke anyways. The two day drive up and back seemed to center around restaurants and sodas and car snacks, without much room for me to politely decline. All in all, it was nauseating, wheezy, and excruciatingly painful.

While we were in Washington I had access to a powerchair, which helped to reduce fainting spells, dislocations, and other falls. Even so, my overall experience was far from positive. It felt like everyone in D.C. smokes, I couldn't seem to avoid rolling through a cloud of it every time I turned a corner. I'm apparently allergic to D.C. itself, and had to drop $45 in the hotel gift shop on allergy meds and eye drops alone. The temperature during the day never dropped below 90 degrees, which is a POTSie's worst nightmare (especially when my stomach makes proper fluid intake impossible). We made the trip for the purpose of marching for immigration rights, but I couldn't even make it through the rally at the beginning. My heart rate spiked to 130+ bpm while I was sitting and someone had to call the paramedics over because I couldn't stay conscious. I will say that the people at the rally were incredibly kind and helpful when I started to faint; one lady held my head up while my partner got an instant ice pack from a nearby ambulance, another lady with her fanned me with her sign while a man nearby let me sip from his very icy water bottle. If it weren't for them, it would have been my first ER trip out of state.

All of this aside, the worst part of the trip was the food. I suppose my stomach is the true culprit here, but food was the more obvious enemy at the time. My grandmother was determined to only go to big fancy restaurants with limited menus full of cheesy, creamy, meals of humongous proportions, and super sugary dessert menus. If I wanted to eat at all during our stay without ruining the fun, I had to do my best to find the one thing on the menu that would do the least amount of damage and try to eat as much of it as I could manage. The issue came when my grandmother decided to take us out to these fancy restaurants once or twice every single day we were there. When you add it to all the real (non-fast food) places she took us to on the drive up, it was too much. My stomach was so overwhelmed and slowed so badly that it took up to two days to digest one meal. I spent the entire trip waking up at 4am to crawl into the bathroom and puke for 30 minutes to an hour every time. It's painful when so many fun, social things center around food and eating.

All in all, the trip served as a shocking reminder that you never get a vacation from chronic illness. That it's going to mean extra luggage for braces and medical devices, it's going to mean packing more clothes to accommodate a body that can't regulate temperature properly, it's going to mean needing rest in between sightseeing stops. It's puking up the 5 bites you took from that $40 meal. It's fainting in public and having to go back to the hotel. It's being in too thick of a brain fog to absorb as much information as you hoped at that art museum you were so eager to visit. It's being too bloated to fit into any of the pants you packed.

The trip was fun, no doubt about it, but it was more painful than anything. It's going to take me a few more days to fully recover from the trip itself, and it's going to take a few more months for me to recover from the pain of this new side of reality.