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Best Practices for Traveling With Fibromyalgia, the Uninvited Passenger

I am someone who has always loved to travel. I grew up lucky enough to go on holidays regularly, as well as move from country to country. I am a wanderer. 

One of the first things I thought when I found out I had fibromyalgia was, “How on earth am I going to get to see the world now?” It nearly broke me. I was homebound for the longest time and sunk into the deepest depression. The size of my world was reduced to however many square feet were inside my flat. That wasn’t enough for me.

On the day I received my official fibromyalgia diagnosis (after months of horrific symptoms, pain, tests and appointments) I went home, opened my favorite travel agent’s website and booked a holiday. I could see the concern on my mum’s face. She had seen me on my bad days when I was barely able to walk the stairs to my flat. I know she was wondering how I would cope on holiday on my own.

But I was determined. I wasn’t going to let this illness strip me of the things I loved the most in the world. If it meant I had to find a way to adapt just so I could keep my independence, then so be it. So I searched and found a hotel that looked relatively self-contained. It did not require too much walking from the room to the restaurant, to the pool and back to the room. Easy enough.

There were some bumps in the road, including one literal one that I tripped over and tore up my ankle on! But eventually, I made it to Rhodes and to what was really the perfect holiday destination. It ticked all the boxes. Or at least, the hotel did. They were so accommodating with my fibromyalgia and it just made my holiday that much better. The airline, however… that’s a whole other story. There were issues aplenty to do with me using crutches on the plane, (curse that bumpy road) because of where I was seated. There was also a total lack of wheelchair support due entirely to me traveling on my own. This was the first time I had traveled with fibromyalgia, and my first time traveling abroad alone. I hadn’t even considered checking to find out if that kind of support was in place. I learned a very tiring and painful lesson.

My next holiday was a very different experience indeed. In hindsight, I look at these two holidays together, nearly two years apart (and me with much less mobility now) and all I can think is I should have just bloody booked it online myself. My biggest mistake was booking in person with a travel agent. Research is key when it comes to booking a holiday now, and of course, I didn’t get to do any of that until it was too late. I had assumed the travel agent knew I needed disability-friendly accommodations after seeing me with walking aids. I also explained all of my disabilities in the travel paperwork. But you know what they say about people who assume…!

I went on that second holiday about a month ago, and it was so awful it’s still having a detrimental knock-on effect on my mind and body.  It has just hammered home to me the importance of looking carefully and choosing wisely when you book your holiday. I booked spontaneously and on a whim. For a moment, I forgot I had fibromyalgia. I forgot spontaneity doesn’t come naturally to me. I forgot that split-second decisions can have lasting consequences, especially when you travel with an invisible, uninvited guest on whatever journeys you make in life.

I came home with mental and physical damage, but I’m hoping that before long I will regain my love for travel and not let one bad holiday ruin the world.

Here are some simple steps to follow to ensure your holiday is disabled-friendly and relatively stress-free.

  • Check Trip Adviser, Facebook and Google Reviews to see whether any information about disability friendliness has been mentioned.
  • Check on the travel website or hotel website to see if they have an elevator, because not everywhere does.
  • Travel with someone if you can. If you’re traveling alone, leave yourself plenty of rest time before and after the holiday to recover from all the travel-day stress.
  • Take a repeat prescription slip as proof of any medications you’re carrying and always take extra in case of delays or accidents.
  • You might want to pack paracetamol, ibuprofen, indigestion remedies, the works! It’s not always easy to find them.
  • Pace yourself. You may feel better in a hotter climate, but the crash will still hit you if you overdo it.
  • Hydrate. And when you’re done, hydrate some more.
  • Pack that Factor 50 sun cream. Sun-stroke is no joke and will likely cause a flare up!
  • Contact your travel agent and your airport to arrange disability assistance including wheelchairs, shuttles to the plane, Ambulifts to help you up to the plane, etc. They’re there to help!
  • If you are traveling alone, make sure you can get an internet or phone bundle. Silence and relaxation are great, but it helps to be in touch with the important people in your life.
  • Most importantly, relax, enjoy, try and forget about all the troubles and woes of home, and just let your body hit the reset button.

Traveling with any chronic illness doesn’t have to be scary. It doesn’t have to be unattainable. When done responsibly and when thought out clearly, you can end up having a wonderful holiday and feel relaxed and “reset” by the time you return home.

Image Credits: Peyton Izzie

Photo submitted by contributor.