5 Must Haves when Traveling with a Chronic Illness

A couple times a year Jared and I road trip to Pennsylvania to see his family, and like many with chronic illnesses, I struggle with lengthy car rides. Over the past 7 years, I have figured out what tools make the travel itself more manageable for my body. Today, I want to share my must have items that I won’t road trip without with you!

Before I move forward, it’s important to note that these tools all come second to: creating/following my pain plan with my medical team, continuing my medication and IV regimen fully while traveling/on vacation, and staying on top of bracing and taping my joints. Anytime I am in the car, at minimum, I have my custom HKAFO on, two pillows on my lap to support my shoulders, and my neck brace is on.

#5 Compression Socks

Most people with Dysautonomia already wear Physix Gear compression socks, and I specifically will not travel without them. When I have been sitting for a long time and I go to stand up – typically to transition to my wheelchair at rest stop – I get super lightheaded, and sometimes even pass out from blood pooling. When I have my compression socks on, I will still get lightheaded, but they significantly lower the chances of me passing out. I often wear these socks as I have Dysautonomia, but I also generally like the compression on my feet while driving anywhere over an hour. For summer road trips where I don’t want to wear the full socks I will were Physix Gear’s calf sleeves.

These are the pink and black compression socks (I also wear these for more than travel, any event or party that I will need to be transitioning up and down frequently or will be standing often I make sure to have them on.)

I have used many compression socks over the years, but for the past 4 years the *only* brand I buy is Physix Gear Sport Stamina Compression socks. I wear a S/M, 20-30mmhg for both the socks and sleeves. My favorite colors are the black/pink in the socks and the nude/beige for the calf sleeves.

The only thing to know about the calf sleeves is that sometimes they do put some light pressure on my Achilles so I typically only wear the those if I want to wear flip flops or sandals.

#4 Water Resistant Pillow

Here is a picture of me in the car with my compressions socks on and my waterproof pillow under my braced foot

When I am in the car my right leg needs to be supported, especially for any car ride over 45 minutes, so I will put a pillow under my heel. Here’s the thing though, I am super allergic to mold, and no matter what I did (due to rain and snow) the pillow would always get moldy. We were going through so many pillows and having to wash them all the time – it was not sustainable.

When I was in the hospital for an admission a couple years ago, we accidentally took home one of their pillows. The majority of hospital pillows are completely sealed with plastic to keep them water resistant and sanitary, and it solved my problem! I replace the pillow 1-2x a year and we haven’t had any mold issues since! Now I don’t have to worry about rain, snow, or anything else.

I totally forgot to take a photo of me in this hoodie while traveling and even though I wear this comfy hoodie all the time I couldn’t find a good photo, so this was the best photo I have (isn’t that how it always goes lol

#3 Light Weight Hoodie

I have hot flashes on the regular so I don’t want to be in anything that is going to be hot and heavy. I have recently realized how much my shoulders love zip up jackets, but these light weight hoodies are still my favorite to travel (and live) in! This cute lightweight hoodie is from my most recent merch line on Spreadshirt. This light weight hoodie is one of the reasons I switched manufacturers! It is buttery soft, and doesn’t trap in heat, I’ve washed it so many times and haven’t had any problems with it because it is such good quality. There are 5 designs available currently, they are unisex and I wear a small and it fits comfortably snug but if you want a looser fit I would size up.

#2 Carry All Pouch

Here is a photo of my carry all pouch from a past road trip where I crashed on the hotel bed, but hopefully this shows how big and pretty this bag is!

If you know me, you know I love Cultivate What Matters and my #powersheets Goal Planner. In their shop they sell what they call a “carry all pouch.” It was designed to fit your Powersheets and accessories. Well last summer, I was going to a wedding and because it is such a cute bag I decided it was the perfect place to hold all my medications, as needed meds, and emergency meds/tools and I fell in LOVE! No one knew it was a med bag and it holds so much stuff (see for yourself here! 🤣)

I ended up getting another Carry All Pouch (teal) for my Powersheets because I knew I wasn’t giving up my new med bag! This citrus print Carry All Pouch goes everywhere with me and holds all of my daily pill containers along with: necessary oral medications, my blood glucose test kit, emergency/as needed med kit, extra tools which I put in the smaller Cultivate accessory pouch (tools such as aircraft boot pump, pulse ox, mask, etc.) epi pens, and more!

#1 Refillable Ice Packs

Now my #1 travel must have – refillable ice packs 🙌🏼 I keep these in our house, the car, my hospital bag, and take them on literally every single road trip/vacation. The set I have came with three sizes along with one ice pack Velcro wrap that can be used with any of the packs in the set. They stay cold for HOURS and when I have injuries where I want constant ice (and don’t want to keep having to ask someone to switch my ice packs for me) I use these. As far as “leakage” is concerned, as long as the lid is secured tightly it will not spill. When I use them constantly, for about more than 24 hours, they sometimes sweat, but that doesn’t happen often . I cannot say enough good things about these ice packs, they are truly my ride or die travel necessity.

There you have it! Those are my top 5 must have’s that I will not road trip without, anything that’s in your “top 5 must haves items that you won’t road trip without” that I don’t have on my list? Comment below to enlighten me and others with your personal insider spoonie travel must haves!

Cassie Nolin is a married spoonie who lives the chronic illness life with EDS + Co. (Ehlers Danlos Syndrome and it’s comorbid conditions.) She challenges others to choose grace over guilt while goal setting, and is in ministry part time serving the online community through Grace + Goals and The Spoonie Study. She loves planting, confetti, hand lettering, and sharing the hope she has found in Jesus. Her blog, Living the Chronic Illness Life, is in the top 100 chronic illness blogs and in 2019 she launched her podcast, Chronically Cultivating, where Cassie encourages women to live authentic and intentional lives through their diagnosis’ not in spite of them. She is on a mission to help other women learn how to trade guilt for God’s grace and control for confetti! You can learn more about her at www.livingthechronicillnesslife.com

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