Travel…ah ya ya

It’s not easy traveling when you are chronically ill. It requires a lot of extra planning, a lot of extra money & a lot of extra patience. It’s extra.

The amount of anxiety that comes with the logistics of traveling with an auto immune disease, is crazy. You not only have to plan the trip, you have to do organizational gymnastics to manage your healthcare needs while traveling.

My first concern is always a wheelchair. I start with the airport. Most airlines are great about setting this up. They get you to your plane for takeoff & they’re there when you disembark. If you have a connecting flight they get you there too! I can’t stress enough how much easier this makes it for anyone with mobility issues. Why make it harder by letting pride tell us, we don’t need assistance? Take the damn help and save your energy for the fun stuff!

I would never give up all the memory making moments that come with traveling!

I never bring my wheelchair on flights. They get damaged and it’s a difficult & long process getting the needed repairs. I always rent a scooter. I have it waiting for me at the hotel we are staying at. I have not had any issues with this either. There are several companies and they’ve been awesome. Once at your destination, you’ll want to be sure that if you need transportation they will accommodate your scooter. Again, this has not been an issue for me.

My scooter buddy 💙

Medical supplies are a frustrating issue when traveling. I have learned to send my nutrition, feeding bags, extension tubes, syringes & catheters, ahead to the hotel a week before. That way I can verify they’ve received it before I even leave for the trip. I carry my pump & medicine on the plane. I don’t want the pump damaged & if I carry my meds I know there will be no issues. They take up most of my carryon, which is frustrating.

Going through security is always fun. I’m in a wheelchair, & I’m always hopeful that I’ll get assigned, TSA PreCheck. This makes it easier. Unfortunately I don’t always get this option. They check me through with regular security screenings. I have to explain, I have a feeding tube, explain the pump & my liquid medication. I always bring documentation from my doctor explaining my condition & need for medical equipment. You can also complete a TSA medical notification card. I’ve never had a need for this as I always bring the documents from my doctor. But I’ve heard the card does help when going through security.

I like to joke and tell security, I’m a cyborg, hence all the tubes hanging off my body. I even tell kids that when they catch a glimpse of my tubes and it freaks them out. I don’t want them to be afraid of it. Cyborgs are way cooler than sick people!

I always fill weekly pill cases for the time I’ll be traveling, plus one extra week. I also take pictures of my prescription bottles. I do not bring the bottles with me. Sometimes they ask for proof of what meds you’re carrying and proof they are prescribed to you. It’s only happened twice to me & both times they were fine when I showed them the pictures.

If you are seriously ill & want to travel, you best plan on spending double the amount that an able bodied person would need.

  • You have to pay to ship supplies.
  • You have to rent a scooter.
  • You will need to tip a lot more people as you require assistance a healthy person would not need.
  • You will pay extra for any private transport, (Uber, taxi, etc..). Because you require a vehicle that can accommodate your scooter.
  • You will spend way more time planning for a trip than a healthy person & time is money!

I don’t think of all the misery, but of the beauty that still remains.” ~Anne Frank

I can never just be spontaneous and travel somewhere on a whim. I just can not. However, I can still travel & I’m grateful for that! We obviously haven’t done any traveling during the pandemic. I can’t wait to plan our first trip when things are better. Can. Not. Wait!

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