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Traveling with a chronic illness: tips for packing and preparing

by Ariela Paulsen December 17, 2019
written by Ariela Paulsen
Traveling with a chronic illness: tips for packing and preparing

Whether visiting family or just trying to escape the cold, this time of year can be full of traveling!  Knowing what to pack for your condition can feel daunting, especially with a new diagnosis. The best thing to do is determine your packing list well ahead of time.  Trying to remember everything while under presser and brain fog can add to the anxiety that you will miss something.

So, a week or more before you leave, when you have some extra spoons, think about the trip ahead of you.  What will the transportation entail? What will you be doing once there? As you brainstorm, write down anything that would be helpful for you to know or bring for each step of the journey.  Here are some tips:

Medicines and medical equipment

Traveling with chronic illness often involves bringing treatment options with you. This can mean bringing a lot of gear.  To help with this aspect, we recommend a good bag that is reasonable to carry and easy to organize. The Mighty Pack is great for organizing all of your gear, reinforced to safely hold sharps, and insulated with space for ice packs to keep infusions and nutrition bags cold on the go!  The side zippers make it easy to access a pump or tubing. If you have too much gear for just one backpack, consider a rolling suitcase with enough packets to be easily accessible.  For smaller amounts of gear, go with a med case like the Mighty MedPlanner.  You can keep your medicines and small gear organized and stow it in your larger bag for safe keeping.

Comfort

It may seem obvious, but sometimes it’s easy to get so wrapped up in what you may need that you forget to bring items that will add comfort.  A good pillow or cozy blanket can be the difference between saving enough spoons and crashing.  Bring safe foods, comfortable clothing (weather-appropriate!), and whatever items would help you relax.

Establishing an accommodating space

While thinking through the trip to plan a packing trip, make sure you know what you’re walking into.  What will the sleeping conditions be like? What meals will be available? When you arrive, who will be there?  Will there be a space available for you to get some recharge time? Don’t be afraid to reach out and find these answers.  Then, think realistically about how you will be feeling when you arrive and what accommodations you may need. I often worry that I am being too pushy, or that I will be a downer on other people there.  The reality is that most people genuinely want to help meet your needs, and just don’t know what to ask! Being able to make slight changes can help them feel useful. Small steps taken to avoid a crash will benefit everyone!  And, frankly, you deserve to feel safe and comfortable, just like everyone else!

If you have trouble asking for help, here’s a little reminder for you!

Developing a contingency plan

So, you’ve brought your medical equipment, cozy clothes, and have a couch to flop in when you arrive.  You’re planned ahead and ready to go! Yet… life doesn’t always go as planned. Make sure to (well before each trip) think through potential mishaps, just to be extra prepared.  What if your flight is delayed? Bring a day or two extra for meds. What if there’s a sudden heat wave or cold spell? Bring an extra outfit for regulating your temperature. What if your symptoms end up flaring?  Research ahead of time and bring phone numbers of doctors in the area who may be able to see you. Remember to bring your “as needed” medications. Having contingency plans ready to go will give peace of mind, and can save a bad day from becoming much worse.

Did we miss anything?  What do you bring on trips?  We’d love to hear about it in our facebook group!

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Ariela Paulsen

Ari struggled with a wide array of health problems for decades before being diagnosed with EDS/POTS/MCAS/etc at age 25. She began writing as a way to heal while spreading information and helping others through their own journeys. She loves being part of the Mighty Well team, sharing the stories and strengths of spoonies everywhere!

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