What’s in My Chronic Illness Day Bag?

Warmer weather and summer are here, bringing vacations, day trips, and other fun adventures with them. Mike and I are big fans of taking day trips on the weekends. It gives us a chance to explore somewhere new in New York City or within a reasonable traveling distance outside of the city. 

When you live with a chronic illness, you need to do a little more to prepare for day-long adventures. Even on vacations, you may go on excursions for a full day around wherever you traveled to. Whatever the case may be, I make sure I’m prepared to take care of my chronic illness needs by packing a bag with all my essentials.

So what’s in my chronic illness day bag? 

Well, it’s a mix of products to help manage my chronic conditions — POTS and endometriosis — and must-have items for traveling. 

For example, Mike and I recently went on a day trip to the Bronx Zoo. Because we were going to be gone for most of the day, I packed my mini Vera Bradley backpack with essential POTS products and other items. Check out my full list with additional recommendations below!

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What to Pack in a Chronic Illness Day Bag

POTS

• Large water bottle
• Electrolyte replenisher packets, like Liquid IV
• Salty snacks (my favorites are Chef’s Cut Beef Jerky, salted nuts, pretzels, and popcorn!)
• Any POTS medication (I’m no longer on medication, but when I was on Pyridostigmine, I packed it because I took it 2-3x per day!)
• Disposable cool packs

Endometriosis/Chronic Pain

• Advil, Tylenol, Aleve, or any other prescribed painkiller
• Disposable cool or hot packs, depending on what feels best for pain
  

Must-Have Day Trip Items

• Sunglasses
• Sunscreen
• Band-aids in case of blisters from walking
• A book to read while traveling or relaxing at your destination (“People We Meet on Vacation” by Emily Henry is a fun read I just finished and highly recommend for a vacation read!)
• Headphones to listen to music or a podcast while traveling to help you relax

Other Considerations:

• Salt tablets, if you take them
• Portable handheld fan to help stay cool
• A hat to also help keep cool
• A water-activated cooling towel
• Sea bands or ginger chews if you get nauseous frequently
• Noise-canceling headphones if you are sensitive to sounds

Tips and Reminders for Summer Adventures

Now that you know what’s in my chronic illness day bag, I just want to go over some friendly reminders for traveling with POTS in the summertime.

First of all, remember to take frequent breaks to sit no matter where you are. Standing too long can increase blood pooling, which in turn can trigger POTS symptoms, cause pain, and make you more prone to lightheadedness and feeling faint. That being said, it also helps to wear comfortable shoes. Thankfully, sneakers are trendy right now, so I’m all about a comfy white sneaker. 

Also, if you use a mobility aid on occasion, consider bringing it on day trips in case you need it (if you can keep it in a car). Most walkers have seats on them that you can use to take breaks, which can be really helpful if you’re somewhere where seating is limited.

Stay hydrated by drinking a lot of water and keeping up with your salt intake, especially if it’s hot outside and you’re sweating a lot. That’s why I love electrolyte drinks because you can kill two birds with one stone. You can also wear light-colored clothing and a wide-brimmed hat to keep yourself cool.

This next reminder is a tough one, but it’s very important nonetheless: Be vocal with the people you are with. If you need something, let them know so you can plan accordingly. I’ve gotten a lot better at this, but I tend to suffer in silence on day-long adventures or vacations with people because I don’t want to seem “different” or like a burden. But I’ve learned that the people I tend to travel with care about me, and they’re very receptive to my needs. So, when you’re out and about, prioritize your needs and express ideas to accommodate them so you don’t end up in a POTS flare up. 

For example, Mike knows that whenever we go on day trips, we need to break up our time spent standing with seated activities. So, at the zoo, we chose to ride a monorail through the Asian exhibit in the middle of the day. That way, I could rest after walking in the morning and recharge enough to walk a little longer after the monorail.

If you can, wear a heart rate watch that also counts your steps. The more you wear it, the better you’ll be able to determine your “point of fatigue,” as I call it. 

For example, from many previous experiences, I know that when I get over 10,000 steps during one outing, I become increasingly symptomatic. That’s typically my cue to wrap up the day to avoid pain flare-ups and other POTS symptom flare-ups the following day. Living in New York City, I needed to get really good at discovering this balance because so much of my travel is dependent on walking.
 

The more you wear a watch and study your step range for when symptoms start to act up for you, the better you can plan future days to avoid repeated negative outcomes. And this “point of fatigue” may change depending on your endurance and/or your current health condition. 

Also, I want to point out that, yes, 10,000 steps is a lot, even for a person without POTS or chronic illness. It took me a long, long time to work up to that level. But there were times when I only got like 2,000-3,000 steps per day, even less when I was my sickest and spending most of my time in bed. So, don’t feel discouraged even if you can only do 1,000 steps per day before feeling symptomatic. It might not always be that way. And even if it is, you don’t need to physically take steps to have adventures. 

With these tips in mind, pack up your chronic illness day bags and start planning some fun summer adventures! In the comments below, let me know where you plan to go this summer. And did I miss anything? Let me know what you keep in your chronic illness day bag, too!


XO,
Laurie