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Traveling With Chronic Pain? Tips From a Spoonie

By Alicia K. AndersonDecember 05, 2017
From the WebMD Archives

I love to travel. My favorite way to deal with stress is to plan my next adventure. My husband and I go on getaways whenever we have the chance. So, I didn’t think it was a big deal when I applied for a graduate school program that would require me to fly across the continental U.S. on a monthly basis.

Then, last January, I had a terrible flare of what I soon learned was psoriatic arthritis. I had to learn how to travel across the country by myself with an uncontrolled autoimmune disorder. I had to adjust my daily life to being a spoonie. (“Spoons” are finite units of measurement that those of us with chronic illnesses use to budget our energy throughout the day – more explanation here.)  But how could I adjust my travel plans?

I researched bloggers, I asked Twitter, and I reached out to family and friends who had travelled on a low-spoon budget. After a few trial weekend trips with my husband, I had to travel across the country alone. All told, I’ve traveled 47 days this year, including 2 camping trips, and 2 trips that were over 2 weeks long.

Here are some spoon-saving strategies I’ve learned (so far):

Airports Are Big. Flights Are Long. Plan Ahead.

• Purchase your tickets well in advance so you can select your seat – and buy as much comfort as you can afford. Take Business class if you can swing it. If you’re in economy, try to get a seat with extra leg room. And take the window seat. If I can avoid basic economy center seats for the rest of my life, I will.

• Get to the airport early and check your luggage. Even if it’s a carry-on size roller-bag. When I fly by myself, I only carry on the backpack that I can put under the seat in front of me. Managing extra luggage just means additional pain for my hands and wrists.

• Use a wheelchair. When I asked for travel tips, one of the things my friends and family repeatedly advised was “swallow your pride.” I have a hard time with this. I want to muscle through. But, even in small airports, I find it’s a mistake to think I can muscle through and go without a wheelchair. (And even if I can, I’ve then spent a spoon or two that I might want to save for after I land at my destination!)

You can reserve a free wheelchair service when you buy your ticket. But whether you reserved it ahead of time or not, when you arrive at the ticketing counter to check that luggage, let the agent know that you need a wheelchair. Usually, someone wheels a chair out for me to sit in while they dispatch a “pusher” out to me. Again, planning well in advance is necessary, because this can take a while if it’s a smaller airline and has a shared pool of wheelchair attendants. The service is always free, but it is customary to tip your wheelchair attendants. They are so nice and friendly, it’s hard not to overflow with gratitude.

The wheelchair attendant will scan your boarding pass – this is very important, because for some airlines, that’s the only way to ensure you’ll have one waiting on the ramp upon arrival at your destination. (Yes, you added it to your ticket when you bought it, but that doesn’t guarantee someone will be waiting. Also, just because you added it to your ticket doesn’t mean anyone will notice until you say something at check-in.)

Using a wheelchair, for me, isn’t so much about saving me from walking – my body seems to be okay with a slow walk. I can shuffle along terminals all day. But what my body hates is standing still. You know what involves a lot of standing still? TSA lines. I’ve learned the hard way that TSA lines become a struggle for me if there are even 5 or 6 people in front of me, let alone 500 or 600.

• Consider getting TSA Pre-check. The $ 85, 5-year membership doesn’t guarantee you’ll be able to avoid lines entirely, but it does guarantee that you won’t have to take off your shoes or unpack liquids or electronics from your bags. For me, that’s worth the extra expense.

The All-Important Carry-on

•  Carry on all of your meds. All of them. The drug companies that make my various injectables always have a free travel kit to transport syringes. I’ve never been stopped about my prefilled syringes or my autoinjectors, but I carry a doctor’s note with them just in case. I’ve also never had anyone ask me about my loose supplements, so my favorite way to pack meds is an extra-large pill organizer with everything already counted out and sorted. All of these things have to be in my carry on, because once I had a 24-hour delay between flights and didn’t have access to my pain relievers. I’m never checking them again.

•  Bring an empty, reusable water bottle. I use a massive Nalgene. Most airports have bottle-filling stations at the drinking fountains along the terminal. This is not just economical and good for the environment, it also ensures I get more than a Dixie cup of hydration along those long flights.

•  Treat yourself with stick-on, disposable heating pads. I keep a “lower back” sized one in my backpack, because it can provide the warmth and relief of a heating pad without needing batteries or a plug, and I can just put one on in the restroom when I really need it.

• Don’t forget a jacket. You’re probably dressing in layers if you’re traveling between climates anyway, but keep in mind that planes can get chilly. I am almost never fine without my jacket. And even if I don’t need it, it makes a nice pillow against the window. What do they say? Get warm and stay warm? I curl up inside my poncho every flight.

• Pack snacks. Depending on the airline you fly, the free snacks (or even the costly ones!) might not be what you need for your health. (Many airlines still don’t worry about gluten – ugh.) I usually pack nuts, because I feel like I need protein on long flights.

• Try other travel tricks. There are lots of gadgets and do-dads that may or may not make your flights more pleasant. Personally, I am on the fence about my neck pillow. When I’m in the middle seat, I love it. It’s the only way I can sleep. When I’ve been able to plan ahead and get a better seat, then I don’t need it. I prefer to lean against the window with my jacket, and the neck pillow takes up so much room in my carry on, I almost resent it.

I’m also up in the air about compression socks. Some people swear by them. They are uncomfortable to me, and the compression doesn’t help my pain. It’s worth experimenting with, though.

What to Pack in Your Suitcase

• Take everything you need to sleep comfortably. Because I travel across the country every month, I have adapted this plan according to the hotels where I know I’ll be staying.

• Take care of all 5 of your senses. For me, this means packing chamomile tea bags, a small candle and a lighter (which I put in my checked luggage without a problem), essential oils, electric blanket, knee pillow, eye pillow, sunglasses, earplugs, headphones, fuzzy socks. All of these things are a waxing and waning part of my list, depending upon how I feel. My destination hotel often has enough pillows I can forgo the knee pillow. Sometimes, I can skip the headphones. But think about your senses when you pack – aim to make comfort portable.

• Pack 2 pairs of shoes. Minimum. You can pack more than that, but I don’t recommend packing fewer. If one pair gives you a blister, without a second pair as backup, you are in for a miserable time.

• Don’t forget bath supplies. A long, warm bath is sometimes the best thing for me after traveling.

Once You Get There, Rest.

• If possible, take a full day to rest after you arrive at your destination and again when you return home. When I fly from Atlanta to California, I leave in the morning and make no plans until the following day. It makes me more patient about flight delays, for one thing. But more importantly, the only thing I need to do when I arrive is check in at my hotel and get comfy. I give myself that whole evening to just relax. I order room service. I take a bath. I change into pajamas at 5:30 PM. I go to sleep at 8. It makes me better able to face the next day!

On the other end of the trip, I almost always end up crashing for nearly 24 hours after I get home. At this point, it’s lower stress to just plan for it and let it happen. I feel better afterwards, anyway.

During Your Trip, Think of Every Stop as a Rest Stop.

• Rest whenever you can. As an adult, I’ve learned that if the opportunity arises to go to the bathroom, I’m going to try to pee on principle. I’ve cultivated the same rule when it comes to people standing around and stopping for any reason. If we stop, I sit. Period. And on my next sightseeing trip, I plan on trying a new energy-saving trick — I just learned that scooters are able to be rented in most major cities, so you can ride while others walk. Most of these rental companies will drop the scooter off at your hotel, and pick it up from there at the end of the trip.

Travel is overwhelming and exhausting – even for people who aren’t spoonies. I find it helps to keep that in mind. Be gentle with yourself.

Alicia K. Anderson was diagnosed with psoriatic arthritis in January 2017. She is waiting for remission so she can backpack again. She has hiked 256 miles of the Appalachian trail (pre-diagnosis) and loves spending time outdoors. While she’s waiting to get back on the trail, Alicia is in her first year of the Mythological Studies at Pacifica Graduate Institute. She lives in Atlanta with her husband and stepson. You can find Alicia on Twitter at @A_K_Anderson

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