I travel with a Chronic Illness, called Crohn’s Disease. Although I am not the only one, not many people blog about travel with a chronic illness. In the Chronic Illness Chronicles I share inspiring stories from other travel bloggers who travel with a chronic illness. The first in this series was Laia, who wrote about travel with Scoliosis. Now it is time for Shannon from In Search of Mexican who shares what it is like to travel in a wheelchair and the challenges of travel with chronic back pain.
Travel with Chronic Illness: featuring Shannon from In Search of Mexican
Over the last ten years it has become increasingly more difficult for me to do normal, everyday tasks. It started out slow. I used to love to hike, but after college it would take me longer to recover from a hike. I’d need to sit at home and rest because of a pain in my back. Then I got to the point where I couldn’t lift anything heavier than a small child.
How it started
At this point my chronic back pain hadn’t yet started to impact my ability to travel comfortably. I didn’t have to travel in a wheelchair yet. During this stage of my life I met my husband and we dated long distance from California to Ireland for six years. Both of us took turns traveling to see the other. The seats in the plane weren’t any more uncomfortable yet than they are for the average person.
Honeymoon without any pain
There are photos of me walking around Rome on my honeymoon completely carefree, loving every moment of it. But today I don’t remember being in any pain while we were there at all.
It was only after I got home and I found this picture of me in Pompeii that I started to see the changes in my body.
After a long day of walking through Pompeii I couldn’t stand up straight anymore. Worse of all I didn’t even know I was doing it. For me this is the turning point, when I became someone with chronic back pain and that has led me to this point where I travel in a wheelchair.
Travel with Chronic Back Pain
I suffer from chronic pain in my lower back that has yet to be diagnosed but started at church camp when I was 14. If you’re wondering how a 14 year old ends up with back troubles, imagine a game like musical chairs, but instead of running to chairs when the music stops you run and jump on someone’s back. We were doing that, I was the “chair”.
My partner was a little bit heavier than I was and the way she held her arms around my neck almost choked me.
In a state of panic I did the only thing I could think to do, I leaned backwards. The camp nurse told my parents I’d be fine with some rest and a few aspirin. And I was, into my 20s. I’m 31 now and I still don’t have a diagnosis.
Now that I’m living in Ireland with the much better healthcare, I can’t lay down to get an MRI. I don’t even lay down to sleep anymore, which brings me to the first challenge I face when I travel with chronic back pain.
Hotel Chairs Are SO Uncomfortable
Over the last few years I’ve not been able to sleep laying down. Every time I book a hotel there is one thing I need to find: a chair. Sometimes it’s a couch, but I try to find a nice comfortable looking chair that I can sit in when I’m not in the wheelchair. It can also be my bed.
One thing I’ve learned is that hotel chairs and couches are never as comfortable as their pictures make you believe. They’re usually hard, very narrow, and terrible to sleep in.
My first travel in a wheelchair was a trip to Germany. I ended up sleeping in my wheelchair for a week because the hotel chair was so uncomfortable. I got a bruised butt that took nearly two months to heal completely. I’ll spare you of those photos, but it wasn’t pretty.
Travel in a Wheelchair: Unique Challenges
It’s pretty safe to assume if you’re in travel Europe in a wheelchair, you will run into cobblestone. They are in every historic district, outside old political buildings, universities… You name it. What doesn’t go well with cobblestones? The little wheels on the front of a wheelchair.
I get around the problem of travel in a wheelchair mixed with cobblestones thanks to the help of Google Maps Streetview. I plan routes to the sights I want to see that have the least amount of cobblestones as possible. Luckily I can still walk for a few minutes if I need to so I get myself as close as possible and walk the rest. Last year however, I found myself planning a trip to somewhere that has never had a Google Streetview camera used in it, Malta.
Travel in a Wheelchair to Malta.
I found myself watching every video I could find on YouTube about Malta (which wasn’t much). I searched images of the streets in the capital Valletta where I would be staying. All of it an attempt to find out how bad the cobblestone situation was in Malta and if I could travel in a wheelchair.
Thankfully I can now report that Valletta has some wheelchair difficulties, but cobblestone isn’t one of them. But much like chairs in hotels, I had no idea how comfortable or not Valletta would be for me. Not knowing what it will be like is the incredibly scary part of travel in a wheelchair.
Going out for dinner
Something as simple as going out to dinner can be a challenge. Wheelchairs take up more room than your average chair so space is a concern. But a bigger concern is stairs. All it takes is one step for a section of a restaurant to be inaccessible to a wheelchair user.
For me it isn’t too big of a problem, but for others it’s a concern that can prevent them from going to that restaurant.
The worst part is most of the time you never know if this is going to be a concern or not until you get there.
Thankfully there are some places that are starting to have 360 degree views of their interior online. At the moment it isn’t very widely used, but I can tell you that I would be more likely to go somewhere in my wheelchair if I know I’ll be able to get into with ease.
How I travel with a Weelchair
I use a manual wheelchair, the kind you see older people in. The nature of my chronic back pain means that I can’t propel myself and I’ve been hesitant to get a motorized wheelchair after hearing so many horror stories.
My wheelchair is powered by a Husband 1.5 battery with about 10 hours of battery power before it needs to be recharged for the night. Because it was made in Ireland it requires a low temperature to function at peak performance as well as constant refuelling with dihydrogen monoxide (aka water).
Get the Wheelchair in a Taxi
Taxis are another big obstacle that wheelchair users face. I’m lucky that I travel in a wheelchair that can fold up flat and fit in the trunk of a car.
That means I can get into just about any taxi that we come across.
But during my last trip to Cologne (Germany) a friend tried to order a taxi for us over the phone and was told the entire city only had a few wheelchair friendly taxis and that it could be as much as a two hour wait for one.
This is in a city with a population of a million people!
This sort of thing absolutely makes me reluctant to get a motorized wheelchair. They don’t fold up, you can’t use them with just any car, and your battery can die. Which leaves you stranded until someone can get you.
Using the bathroom in public can also be quite a challenge. The bathroom might be downstairs or upstairs. There may not be a bathroom I can enter with my husband, or it might be like my experience in Cologne earlier this year where I had to use the men’s bathroom because it had the only wheelchair accessible stall. Ew.
Fix a broken Wheelchair
What happens when your wheelchair breaks and you’re on a trip?
I learned about this first hand while we were in Malta. Thankfully, we were only about five minutes away from our hotel when I heard the loud snap as one of the front wheels attempted to fold itself in half.
We were on our way back from an evening concert so there was nothing we could do except wait until morning.
In the morning we went down to the hotel’s front desk and explained what happened in the hopes that they might know where we could get a wheel replaced.
They didn’t, but the Maltese, they’re so incredibly helpful. They called around until they found someone who could repair my wheelchair and took my husband and my wheelchair to the medical supply place.
It was an incredibly smooth process but it terrified me. I basically had to give up my legs to a stranger. What if they decided to run off with it? Or try to give me back a wheelchair that wasn’t mine? My anxiety had quite clearly kicked in.
Which is why I put together a guide on what you should do if this ever happens to you.
I make sure to have pictures of every little chip in the paint, every little dent and identifiers of the wheelchair so I could prove that chair was mine if I needed to.
People’s Reaction to my Travels in a Wheelchair
There seem to be three different types of people in the world.
- Those who talk to the person who travels in the wheelchair.
- Those who talk to the person pushing the wheelchair.
- And people I know.
People I know are the people who will talk to me and my husband equally, never ignoring the other half.
But everyone else? They fall into one of those other two categories.
The most common being the ones who will talk to my husband as though I’m not even there. Even if whatever they’re talking about is for me and I am literally sitting between them and my husband. He’ll get questions like “Does she need….?”
The only thing I can really do is answer the question as though it were being directed towards me. Much more rarely it’s my husband who will get the cold treatment. Though honestly, it’s a bit refreshing for us both.
If you’re chatting with a wheelchair user and their pushing partner remember to have conversations with them both and ask questions to the person you should be asking questions to. They’ll appreciate it. But for a more light hearted story…
How Pokémon healed my back pain… or not.
Just after Pokémon Go came out my husband and I met a group of college students in a park down the street from us. We met up a couple of different times. But because there was never any need for me to stand up they all assumed, quite fairly, that I couldn’t and didn’t stand.
One day while we were catching Pokémon in the park, I decided to stand up and have a bit of a stretch. When I was getting up I realized that none of them had ever seen me standing.
So I slowly got up, reached my arms out above my head and in a slightly raised voice declared “It’s a miracle!”
Every one of them stopped what they were doing, slightly slack jawed, amazed and completely believing me. Of courseBecause their faces were just priceless I couldn’t help but break out in a smile, giving my secret away. I’m not sure I’ll ever be able to pull that joke off again, but it was worth it.
My Travel Wish for Me and my Wheelchair
Even though the wheelchair has given me some amazing freedom there are still things that I’ve not worked myself up to doing yet.
Overcome my anxiety to fly with my back pain
My longest flight in recent years was a three hour flight to Malta. My anxiety was through the roof. Flying is the most stressful part of traveling for me. If the seat is uncomfortable there’s not much that can be done.
I can’t get up and walk out, I’m trapped.
Fly intercontinental with a wheelchair
My family all live in California, a trip much longer than just 3 hours. I’m not there yet. I’ve only been back to see my family once since I moved to Ireland, it was just at the start of my chronic pain problems.
Dreaming of a cruise with a wheelchair
Travel on a cruise with a wheelchair is something my husband and I toy with from time to time. Would we like it? Would I be comfortable? Again, I’m not there yet, but I will be.
Continue to travel with my chronic back pain
I may take baby steps to get back up to a sense of normalcy but I’ll not let my chronic back pain or my being in a wheelchair stop me from travelling.
I may need to do a little bit more prep work and investigation than your average traveller to make sure a destination suits my needs. But this is something I’m happy to do for a successful trip.
And ultimately it is what inspired me to start a blog. I had to take a leap of faith on our trip to Malta, luckily it paid off. But it made me wonder, how many people when faced with this difficulty would just give up on their dream of going to that destination? Maybe I can help make the world a bit of a better place for everyone while I travel in a wheelchair.
Do you travel with a Chronic Illness or a Chronic condition? Would you like to be featured on this blog in the Travel with Chronic Illness Chronicles? Please contact me with your details at firstname.lastname@example.org and you get a change to share your story!