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Traveling is one of the most exciting things to do whether you’re alone or with others. And personally, I love it, and I hate it. As a person living with Pompe disease, traveling is one of my toughest challenges. I know traveling is not as much of a big deal with many other patients with Pompe disease, who can have smooth travel experiences. Nonetheless, for me, it can be exhausting. A day of traveling for me is a day of worrying even though everything is so planned out.

However, before anything is planned, everything has to be Googled. That means I have to look up the travel time and distance because I know how much time my body can and cannot take on the road before my back starts hurting. Then I have to look up the place I’m going to, which is very important because, believe it or not, in this current year of 2022, every place is not wheelchair-accessible.

So, I usually Google the place, read the reviews, and check out the pictures of the inside and outside of the building and if the place isn’t listed as wheelchair-accessible, I would call to ask. I do this everywhere I go. Whether it’s a restaurant or store, I have to check the place out beforehand.

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I once went to a hair salon and didn’t check the place out online first. When I arrived, I couldn’t get into the salon because they had a few stairs. It was disappointing but also embarrassing. I got upset with myself for not checking ahead to ensure this business complied with Americans with Disabilities Act standards.

So once I know the time, distance, and accessibility, I now have to figure out how to get there. I have to be driven around, whether it’s public transportation or someone driving me. Let me tell you about one thing that doesn’t go well together, Pompe and potholes. Weak muscles and terrible streets. Wearing a seatbelt is not always enough. I pulled a muscle in my back from a bus hitting a curb while turning, and in another incident, I hurt my neck from my driver that went over a pothole, causing my body to jerk. I adore freeways because those usually go smoothly. But I have to be honest and say that car rides can sometimes be a little tough for me. And knowing this means that I have to be prepared.

Unlike most people, I don’t eat breakfast. I’m just not a breakfast person, but I have learned that if I don’t eat breakfast before traveling, I can get very sick. I get terrible headaches when I don’t eat. I heard hunger headaches are common, but for me, it’s terrible. This is the most important thing when you have a long travel day ahead and especially if you have to fly or drive for hours. Your strength and energy are limited, so making sure you’re healthy is a must with traveling. 

When it comes to my overall health, as far as my strength and energy, I take into consideration where I’m going. For example, if I’m going to a doctor’s appointment, I know it’s a 10-minute ride there and that I can do just fine without eating breakfast. If I’m traveling to another city or state, it’s a little more complicated. 

I know my nerves and stress upset my stomach. And that’s another reason I don’t eat in the morning, but when traveling, I have to force myself to eat something, usually fruit and eggs. If I don’t have to leave so early in the morning, I will sometimes drink a protein shake for breakfast. 

For anyone with Pompe, protein shakes are your best friend when traveling. If you don’t eat a lot, like me, I always depend on a protein shake. I promise it will give you the nutrients and energy you need for traveling. Then I carry snacks and candy everywhere I go. 

Everyone is different; many can eat a big breakfast before traveling, but if you don’t eat a lot, you have to pay attention to your body and strength. Traveling with Pompe takes a lot out of you. Time moves very fast, and before you know it, you will go through half the day.