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Travelling with a Stick
thoughts on travel with a hidden disability

Last winter, my father called and offered to send me anywhere in the world I wanted to go. I was excited. But I was also dubious. I have chronic fatigue and fibromyalgia, which feels like having mononucleosis, but with more muscular pain and loss of coordination. These are not things that lend themselves well to travel!

However, I wasn't going to pass up the opportunity to do some travelling, so I decided to take my chances. I figured that I could either pass up an incredible trip on the chance that my body might demand three weeks of total bed rest in the middle of it, or I could take the chance that I might feel all right all the way through, or part of the way through, and get to see places I'd never been. As it turned out, I didn't crash until near the end of the trip, and I'm quite glad I went.

I took some reasonable precautions, and they may be useful for other people who are thinking of travelling with a disability. I can't guarantee that what works for me will work for you, but I can assure you that you won't be the only one who's not fully abled who wants to get out and see the world! In fact, according to the latest Frommer's Budget Travel Magazine there are even opportunities to see the top of Machu Picchu, although that's a little expensive. So here are the things I did or thought about.

First be willing to admit to yourself that you can't do everything. If you don't do it already, look into getting something that will be of assistance, and make your disability more visible. In Europe, the fact that I carried a cane made it about 85% more likely that people would give me their seat on the bus or train. And the cane I took with me also had a fold-out seat, which meant that I could sit down whenever I had to. I had been worried about carrying a cane, thinking (because my disability is invisible) that I wasn't "really" disabled enough. But the trip convinced me to carry a cane all the time. I could walk ten blocks or more in a day without collapsing!

It does you no good to wish that people will notice and make allowances for your disability, if they can't tell that you have it. I would even tell people when I needed assistance. I practiced talking about it without feeling embarrased--saying, "Do you have an elevator? I can't climb more than one flight of stairs." Or sitting down when I had to.

Second know your limits. Even though I would have liked to climb to the top of the Arc de Triomphe, or go hiking in the Swiss mountains, I satisfied myself with the things I could do. And I practiced acceptance. And I found things that were interesting. Because I can't stand up for long at one time, I paid the extra cost for sitting down in restaurants and cafes. I sat down in parks. I sat down at the edge of sidewalks. I slowed down, and got to see more. And I gave up late nights and wild parties. But I got out to do a lot more than I would have if I'd stayed home!

Third know yourself. Keep track of how you feel. Are there times of the year when you feel healthier? Are there things that make you less healthy? Are there things that make you healthier? Be aware of these when you travel. I am healthier overall in the summers, so this is when I went travelling. I also knew which foods would make me feel worse, and avoided them (most of the time--I took a chance a couple of times, and everything went fine, thank heavens!). I also paid attention to the times of day when I did activities, knowing that for me, mornings need to be slow. Don't be afraid to take a chance, but be aware when you're doing so, and have a backup plan.

Fourth take care of yourself. Be willing to slow down. Make sure to keep taking any of your usual medications. Bring along things that will make your journey more comfortable (like a bucky pillow, or a tea that you like). Be generous to your body, and it might repay you by being willing to do the things you want to do. I also made sure to build up to the journey slowly, by taking day trips around home. And be willing to pay a little extra to have your needs met. I paid more to stay in a hostel that was closer to where I was going to be in the daytime. I also paid for unlimited transit tickets, even though I didn't know for sure whether I would need them. But I was more willing to get onto a bus or a train when I was tired, because it was just as cheap as if I didn't. You can also keep the cash on hand for taxis, if this seems easier to you.

Finally, travel light. Take the absolute minimum along with you. And, if possible, take it in luggage that is very easy for you to manage. I had a day bag, my cane, and a backpack with wheels. It was plenty of space. I could manage with it pretty easily, although I got tired after several blocks. But, when travelling, I'd rather have energy than stuff. See the packing page for tips.

Carpe Diem!

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