We are preparing to go on holidays so I thought I would do a bit of a survival guide to travelling distances with CRPS
We are driving to our destination over 2 days instead of flying. Flying increases the pressure in my leg and makes me close to vomiting. I have wanted to jump out of the plane, with or without a parachute. The vibration through the floor is horrendous, as well as take off and landing. Going through airport security is no picnic either. Sitting in a wheelchair they ask you to walk through security or lean on them. My husband has tried to come back through to get me and they wouldn’t let him. I have a card that says I should not be going through the arch because of my spinal cord stimulator. They ignore this and tell me I have to walk through. I think it’s more laziness on their behalf then anything else.
I have repeatedly asked the drug/explosives detectors to not touch my right side. They reply with an ‘ok’ then proceed to do it anyway with me trying to pull away and squealing in pain.
I put a thick pillow on the floor of the car to take out a bit of vibration. I also have a body pillow underneath my right side to cushion my hip. Sometimes I’ll throw an extra one down just for a bit more protection or to squeeze the heck out of when my pain flares up.
We stop every few hours for a break. It adds extra time to the trip but that doesn’t matter. Unlike a plane where you can’t get up and move about, or change positions without the death stares of the passenger next to you, I can do whatever I need to in the car.
This trip I’ll be travelling with my chair and my new smart crutches. We have hit a few snags in our previous trips where someone is illegally parked in the permit only parking spaces or the places are very unfriendly to wheelchairs. The crutches will be my back up.
My saviour at night. Hubby constructed my bed frame from pvc pipe and joiners. It means it can fit to any bed without any fuss.
We quite often ring hotels or motels before we book to make sure they are wheelchair friendly. We have been assured of this in the past, arrived to only find stairs and lots of them. Or a shower over a bath. Or a ledge to step over to be able to get into a shower. It’s really unsettling to have to have a shower in a can rather then a shower.
When we go to different cities and want to do the touristy thing, we jump on Google street view to make sure entries are suitable.
Make sure any scripts you have and might need when away are done at your regular pharmacy. I almost always carry a roll of rock tape for my hand. Both times I forgot, I needed it.
I always take a couple with me that can be microwaved. I need them after a long trip in the car for relaxing tight hip muscles.
I have one that tucks up unser the dash mat. I can’t put sunscreen on my affected leg, it’s just not possible. But I get burnt extremely easily so had to find a way to protect it.
I love music. I have a pretty expansive taste. I love bluegrass and country, pipe bands, folk music, rap, pop, rock and metal. We always stock the iPod up with a lot of music. Singing in the car (mind you very poorly) is a good distraction. I sometimes like to pretend we are in carpool karaoke with James Cordan… because why not?
When we have gotten to our destination we always have chill out time. Where I don’t have to go anywhere, do anything or see anyone. It gives me a little time to start to recover from the trip in the first place.
Try new things, eat things you don’t normally eat. Explore. Rest. Relax.
Your holiday is about doing things you want to do.
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