This weekend, many people will be traveling by car or by plane. While you can find many checklists on how to pack for your trip, I have yet to find any tips for someone traveling with a chronic illness.
As a trucker’s wife, I have unpacked and packed my bags more times than I can count, but no trip since my diagnosis with a chronic illness was like the trip I traveled alone from Iowa to North Carolina last July. Little did I know at the time that driving even short distances would soon be just a memory. So I am blessed to have taken this trip.
It was common for me to get fatigued and lay down in my car on short trips around town. Nowadays I have vision issues and brain fog to add to the sneaky fatigue.
Many of us spoonies have a preference for traveling by plane or car. While some of my tips will help with plane travel, I prefer to travel by car for these reasons:
- Temperature intolerance – every time I have been on a plane, I have either got too hot or too cold. With the chronic illness I have this causes my mobility to worsen and triggers fatigue in my eyes and brain.
- Mobility devices – they add to your luggage and even with assistance it is a ton of work.
- Waxing and waning of symptoms – the uncertainty of when I will need to use the restroom or move a painful limb. With airline restrictions, I fear I would be the lady being removed from the flight because of my symptoms.
- Controlling my surroundings – stress, noises and smells can trigger many symptoms to flare. Something like a perfume of another passenger can send me into a flare for weeks.
I have a third row GMC Acadia SLT. I love my car. I clean my car from head to toe before I pack it. I like my living space to be clean and the plan is that I will be in it for a few days traveling. I plan ahead and lay the second and third-row seats down. On the passenger side I pack my walker, suitcase, and hang up garment bag(s) and anything extra I have. At the hatch door behind my pillows, I have a large cooler.
On the driver’s side, I fold a foam mattress in half and add my pillows and blankets for naps. In between the seats in the back I have my CPAP machine plugged in, water in the tank and ready to go. My car has a normal home plug in the back, so this is very convenient.
In the front passenger seat, I have my purse and my medication bag. I take both in the back with me when I go. I hide them under my blankets so no one is tempted to break in and grab them while I am in there napping. I have a small cooler up front on the floor that I refill with stuff from items in the big cooler in the back.
I have downloaded audiobooks and music ahead of time that are exciting and keep me engaged. I use a hands-free headset for phone calls and talked to my trucker husband as he also drove, which was fun. I listened to the book “Traveling Light” by Max Lucado, which was pretty time-appropriate with all the stuff I packed in my car.
The reason this is my choice? I have learned over the last 13 years to listen to my body. It is the most important thing you can do on a trip. Often if we are on someone else’s time, we push through what our body is telling us to do and pay for it.
As a trucker’s wife, I am used to sleeping at rest stops and truck stops. The one difference is in the semi our sleeper has dark windows and a curtain. Therefore, I use my hang up garnet bags on each side of the car. I place stuff on top of the cooler and I park in a safe, well-lit area. With the items around me, you cannot see I am in the car. This is where I will remind you if something doesn’t feel right, listen to your gut. Move, leave, go!
At the truck stops, showers are only $12. Most truck shops have an accessible shower with a shower chair. If you use a shower chair at home, ask for the accessible restroom. Please remember that the truckers are on limited time, so be aware early morning and late nights have long wait times. Also, many truckers are in wheelchairs so let them go first please. I am a fall risk so I use the accessible shower, but many times the showers are busy, and they just go by first come first serve. So be nice to the truckers and workers and ask. I suggest a small tip, as they provide towels and clean up after you.
My trip didn’t cost me any extra for hotels. Someone asked me if I was afraid. I asked them if they ever went camping, then asked them if they were afraid when they went camping. I thought it was funny because if you camp in a tent, there are no locks and you’re behind fabric. Where I camp, I am in a locked car. Were there times that I was restless? Yes, but that goes to the trusting your gut thing; I moved.
I run a car diffuser with energy essential oils at drive times and rest oils when I am resting. We do this in the truck, so it helped with the normalcy for me. You’re more likely to rest if you have something you do at home that you do when you’re on a trip.
I would suggest a location app on your phone. We use one called life360 and it is very helpful. In many ways we use it like the “help, I can’t get up!” button. If I go somewhere and can’t drive home, my husband can route right to where I am. I suggest you check in on this app along the way to let your loved ones know where you are.
Some things to think about before you head out:
Bring your mobility devices. If you don’t have room for your scooter or wheelchair, have your family call a local rental place to check a price on one for you to use while you’re there.
Remember when packing, keep your medication in original bottles and keep them on you! It is very hard if you are staying with family or in a hotel because you just don’t know. There are lock boxes you can get to travel with that at least will deter them. But in a hotel pay for the lock box, you’re out of town so the likelihood is slim that you are going to get replacement medication, especially if it is pain medication.
Whatever reason you are traveling, I pray this has been helpful. If you have any other suggestions for our fellow spoonies, feel free to comment with your ideas!