This weekend many people will be traveling by car or by plane. While you can find many check list’s on how to pack for your trip, I have yet to find any tips for someone with Chronic illness and traveling.
Spoon Theory Explained
https://youtu.be/jn5IBsm49Rk
As a trucker’s wife I have unpacked and packed my bags more times than I can count, but no trip since my diagnosis of 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 be just a memory. So I am blessed for this trip.
It was common for me to get fatigued and lay down in my car on short trips around town. Now day’s I have vision issues, and brain fog to add to the sneaky fatigue.
Many of us Spoonies have a preference of 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 to hot or to cold. With the chronic illness I have this cause’s 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 feel I would be the crazy lady being removed from the flight because of my symptoms.
- Controlling my surrounding’s – 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 hope these idea’s help you, but if you remember anything from this blog it’s this. if something doesn’t feel right listen to your gut MOVE, LEAVE, go!!
I have a 3rd row GMC Acadia SLT. I love my car. I clean my car from head to toe before I pack it. Call me crazy, but I like my living space to be clean and the plan is that I will be in it a few days traveling.
I plan ahead and lay the 2nd and 3rd 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. You will see why I have this square in a moment.
On the driver side, I fold a foam mattress in half add my pillows and blankets for naps. In between the seat’s 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, 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 those 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 audio books and music ahead of time that are exciting and keep me engaged. I use hands free headset for phone calls and talk to my trucker husband as he also drove which was fun. (side note, I listed to the book “Travel Lightly” by Max Lucado which was pretty time appropriate with all this 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 truckers 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, but lit area. With the items around me you can not 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. Now I am going to share a secret, but I pray that we are honorable and remember that the truckers are on limited time so be aware early morning and late nights have long wait times. There is a handicap shower with a shower chair. I would use your judgment. If you use a shower chair at home, then ask for the handicap restroom. Also, many truckers are in wheelchairs so let them go first please. I myself am a fall risk so I do, 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. (They provide the towels.) I suggest a small tip, as they do 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 we do camp, but in a tent, there are no locks and your behind fabric. Where I am in a locked car. Were there time’s that I was restless yes, but that goes to the gut thing, I moved.
I run a car diffuser with energy essential oils at drive times. 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 our life, In many ways we use it like the “help I can’t get up button” If I go somewhere and cant 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 cane, walker and scooter. If you don’t have room for your scooter have your family call a local rental place to check a price on one for you while your there. (If your coming to Des Moines and need anything let me know I would love to help you out on who to call)
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 a hotel because you just don’t know. There are lock boxes that you can get to travel with, that at least will detour them maybe enough. But in a hotel pay for the lock box, your out of town the likelihood that you are going to get replacement medication, especially if it is pain medication is 1% it is just not done!
Whatever reason you are traveling I pray this has been helpful, and if you have any other suggestions for our fellow spoonies feel free to comment with your ideas, I would love to hear your ideas on Plane travel or added idea’s on car travel.
May God watch over your travels.
