Is traveling with a chronic condition worth the risk?

I knew I was in rough shape when I opened my eyes to total darkness. My midday nap had bled solidly into the evening.

It was the Monday after a weekend spent in Chicago, a five-hour drive away. My partner perched at the foot of the bed, a look of concern on his face. “Are you up for dinner with us tonight?” he asked, rubbing part of an exposed foot peeking out from under the covers.

When I’m having a bad day, meals are a challenge. I’m either nauseous, not hungry, or find the only palatable food in the whole house is a handful of dry cereal. It’s why meals in our house aren’t homemade when I’m sick and food goes bad in the fridge.

I reluctantly shook my head, not wanting to admit how poorly I felt. I wasn’t up for making dinner that night. Turns out my partner wasn’t, either, as seconds after he shut the bedroom door, I heard an excited chorus on the other side of the house: “Pizza!” For the kids, takeout pizza is a solid perk of my chronic illness.

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Taking travel precautions

Considering packing lists, the comfort level of lodging, and the need for naptime in the travel itinerary, managing a chronic illness affects all areas of a trip. I overpack medication, for instance, bringing every single as-needed drug a doctor has prescribed me in case any of the varied symptoms of acute hepatic porphyria (AHP) arise. I bring my pillow, a sleep mask, and two weights of pajamas, because sleep is critical for the management of my illness.

We left on Friday morning and I slept upright in the passenger seat for most of the trip as my partner drove through sleepy winter cornfields. We arrived in Chicago with enough time to move in our suitcases and get settled into our hotel, and I was utterly exhausted from the trip. It was time for nap No. 2, especially if I wanted to be up for dinner and our concert that night.

After dinner, we headed to the concert venue early. Neither of us had ever been to Thalia Hall and were unsure what our “general admission” tickets got us. We were hoping we’d be able to sit up in the balcony area, but when we climbed the stairway to find a seat, we were told we needed a special kind of ticket. I was concerned I wouldn’t be able to stand for the whole show on the floor, but luckily we were there early enough to snag a folding chair at one of the tables lining the concert hall. They were up on a small riser, which ended up providing a great view of the show — one that allowed me to take a seat when I needed one.

The next morning we slept in, then met some friends for brunch in Wicker Park. We walked around after our meal for a few hours, but I knew I needed to lie down if I was going to last the night, so we went back to our hotel room for my afternoon nap. We went to another concert Saturday at the same venue, but this time we knew what to expect in terms of seating.

Evaluating the worth of traveling

At the end of the concert on Saturday night, I was feeling fulfilled and happy. I knew I would start to feel exhausted as early as the next day, and even if I did sleep all the way home, I knew the trip would likely affect how I spent the following week. My partner spent the same three days away in Chicago as I did, but after one night of extra sleep, he’d recovered. Meanwhile, because of my chronic condition, I may be affected for days.

Like anything else, traveling takes extra energy for me. Before AHP affected my day-to-day life, my partner and I went on a lot of adventures together. We feel closer after getting away, eating different food, and exploring new places. At this point in my life, a few days of recovery are worth a few days of traveling with him.

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.