I recently traveled to New York for a U.S. Pain Foundation event, and it got me thinking: what are some of my colleagues’ and friends’ favorite travel tips for people with chronic illness and chronic pain?

This week’s video is PACKED with tips—I count more than 20—and I’m really excited to share it with you today. It’s longer than usual, but I hope you find it worth your time.

*AWAP = As Well As Possible

Now it’s your turn:

What’s YOUR favorite travel tips for folks in our community? I wanna know! Join the conversation in the comments below, share your experience and ask for advice from our community.

Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than 10 hours of guidance, advice, and bloopers.

Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email.

Until we meet again: Be AWAP! Smooches!


Transcript, provided by one of our awesome readers:

Jenni Prokopy- “Hey everybody. It’s Jenni Prokopy from chronicbabe.com and today is another AWAP Wednesday.

If you haven’t watched any of these before, a quick refresher. AWAP stands for As Well As Possible. And in all things, that what I wish for you. That you live your life as well as possible. No matter how much you have to deal with chronic illness or chronic pain, I think you can do it. I’m working on doing it. Yes! I know that you can.

So, I’m coming to you today from a hotel in Westchester, New York, because I’m here for one of our, um, US Pain Foundation Take Control of Your Pain events. I’m wearing my US Pain Foundation shirt, which I blinged out because it’s a polo shirt, and I don’t wear those. So *laughs* I had to make it my own and kinda be silly with it. You know how I roll.

So, I wanted to share with you a few of my favorite travel tips, and I”m gonna try to get some from some of my colleagues because they are seasoned chronic pain/chronic illness travelers. So, here we go.”

*scene cut*

Jenni- “So I know it’s a little bit of wobbly cam today because I’m doing this on the fly. But I hope you think it’s worth it.”

*scene cut*

Jenni – “Okay here I am with Lori Monarca. She runs the US Pain Foundation office, she is amazeballs. She’s got a tip for you.”

Lori Monarca- “Um when traveling I try to leave a little bit earlier, so before an event I have time to relax and unwind.”

Jenni- “I love it. Thanks, lori!”

*scene cut*

Jenni- “One of my first tips is always ask for the pillows that you need. If you need 27 pillows, then ask for 27 pillows. *laughs* If you’re like me and you want foam pillows, not feather, call ahead and when you get there ask immediately for housekeeping and they will bring you the pillows that you need. Do not sleep on crappy pillows.”

“If you’ve gotta bring your own pillow with you, which I often do in my suitcase, just shove it in there.”

*scene cut*

Jenni- “Hey this is Jenni again. I’m here with my friend Jacki”

Jacki- “Hi.”

Jenni- “And Jacki is a fellow US Pain Ambassador. And Jacki’s got a great travel tip for you.”

Jacki- “So, because I have problems with some smells and with migraines, I tend to bring a down pillow because it crunches up smaller, and that way it sorta absorbs the vibrations while I’m on the plane. And then at the same time when I go to the hotel if I can’t stand the smell of the sheets I have a pillow to sleep on, and I usually fold up the duvet cover that flannel from my down comforter, and I fold it up and put it inside the pillow case so nobody can even tell it’s on top of the pillow.”

Jenni- *laughs*

Jacki- “And then I’ve got a blanket of top of it that doesn’t smell.”

Jenni- “I love it!”

*scene cut*

Jenni- “Always tip people when you’re traveling. I usually tip a couple bucks to the housekeeping staff everyday. Some people feel they should just tip it all at the end of their trip, not a great idea. Different people usually clean your room day to day, and when you tip they take better care of your room, and they’re more eager to help you if have a special request. Like extra shampoo, or extra pillows. *laughs* If 27 pillows. So tip, don’t be stingy.”

*scene cut*

Jenni- “Hey, I’m here with my girl, Shaina!”

Shaina- “Hi.”

Jenni- “She’s the director of State Advocacy for US Pain. And she’s got a tip for you.”

Shaina- “Sure, so this tip is more towards those who might have an anxiety disorder or panic disorder.”

Jenni- “Me.”

Shaina- “So, yeah. For me, I always make sure I have this little kit. Something that I have is my medical bracelet, it just makes me feel more comfortable and safe so if anything were to happen to me, someone can just look as my information right away. I carry a worry stone as a grounding technique, so if I start to feel a little anxious I can just do that. I also downloaded two apps that are for meditation and relaxation.”

Jenni- “Mm.”

Shaina- “And I carry around some essential oils as well and do a little lavender, maybe I’ll put a little bit on my wrist so that way if I’m about to go speak before some, or you know, a big crowd or something like that I can just gracefully sniff and be okay.”

Jenni- “I love it. I have a little lavender on my wrist right now.”

Shaina- “Oh. Oh it’s good. That helps right now.”

Jenni- “Relaxed.”

Shaina- *laughs*

Jenni- “Thanks, Shaina.”

*scene cut*

Jenni- “Another tip. Hotel bathroom lighting, not usually the best. Or it’s fantastic and you’re gonna see a bunch of stuff that you didn’t know you had, like a weird hair that grows out right here. *touches chin then pulls hand straight out and away* So, be prepared. Bring tweezers.”

*scene cut*

Jenni- “Okay, so I’m here with Ellen and Stu Smith. They are co-directors for medical marijuana advocacy for US Pain Foundation. They’ve got a couple tips for you.”

Stu Smith- “I would say, that just as far as car travel, that one of the most important things is, not to push yourselves beyond your limit. We have done it many times, and regret it. You need to take regular rests. Even to the point of pulling over to the side of the road and sleeping. And taking a nap.”

“It’s similar to uh, when I used to have a chainsaw. The guy that sold my chainsaw said, uh the most important thing is you get more accidents in chainsaws happen when. you push yourself beyond your capacity. That’s when you have accidents.”

Jenni- “Oh.”

Stu- “It’s the same thing with traveling with EDS or Fibromyalgia, or any chronic pain. When you push yourself beyond, you pay the price.”

Jenni- “Mhm. Do you feel the same way?”

Ellen Smith- “Absolutely. And if we’re flying, we’re very careful to call the airport. Even when somebody else is told that I’m disabled, I always make sure I call them back and make sure they understand I travel with a service dog. We always also make sure because a lot of walking for me doesn’t work.”

Jenni- “Mhm.”

Ellen- “We always make sure we have a wheelchair waiting. We did ,make the mistake one time of traveling with our own manual wheelchair, and then proceeded to break a brand new one on the flight.”

Jenni- “Oh…”

Ellen- “So we don’t do that anymore. We actually use the airline wheelchair instead, and then if we’re gonna be at a location out of our state for a while I will rent a scooter instead of taking a chance of having my wheelchair break. The other thing we always make sure is to pack food. Always have a little supply of healthy snacks in the car, plenty of water, um, medication. We always think ahead in advance of what we need to be taking, because sometimes when you’re traveling you kinda lose track of time and you forget those things.”

Jenni- “Mhm.”

Ellen- “And especially with something like POTS, if you don’t stay up with your medication, next thing your blood pressure’s dropping down and then you’re kinda in trouble, so. You know those are just things, you know, getting up, moving around, taking breaks, um. You know, packing small snacks, stuff like that, we have found very helpful.”

*scene cut*

Jenni- “Another tip. Y’all know I like to bling out things. Yup. Pill cases. I bring enough meds for the entire trip, plus at least two to three days. Sometimes more depending one where I’m going, what the forecast is like. Don’t under pack your meds. And don’t pack them in your suitcase that you check on the plane. Always keep them in your carry on. And if you’e worried about documentation, bring all your prescriptions. Okay?”

*scene cut*

Jenni- “Another thing I do is I work out. You see here I got my travel yoga mat and yoga strap. I also went swimming yesterday. Don’t think I’m going to have time to go today, so i’m really glad I squeezed it in yesterday.”

“And, be flexible. Not just with yoga. But be flexible about when you work out, how much you work out. You may not fit in your entire work out, or maybe different things than you’re used to. Call ahead. Find out what the hotel’s amenities are. If they don’t have their own gym they may have access to a local gym. If they don’t have their own pool, they may give you access to a local pool.”

“You never know, and it never hurts to ask. In fact it helps you to ask. So flexibility is key, for example. I like to to swim laps. Yesterday I got into a pool full of families and kids. Some kids that I knew, some families that I knew. And I wanted to swim laps, but you know what? The kids want to play. So I would swim a lap, we would play, I would swim a lap, we would play. Some thing I would go this way across the pool and a kid would swim underneath me this way.” *points twice in perpendicular directions*

“And actually it was pretty fun. And I think I worked out harder than I have in a long time, but I was so enjoying it that it didn’t feel like work. So, I really encourage you to be flexible, and to seek fun in your work out when you are traveling. As much as you can.”

*scene cut*

Jenni- “Okay I have two red heads with you at the same time. Which is dangerous.”

Gracie Bagosy-Young- “Ah!”

Jenni- “This is Gracie Bagosy-Young from Gracie Gean Chronic Pain Advocacy, and she’s got a few tips for you.”

Gracie- “Hello! When I travel I have CRPS in my right arm, I also have Lyme disease, and I have horrible horrible anxiety about putting my overhead carry on into that compartment up above. Unless my husbands with me to do it, because he’s really big and tough.”

“So what I always do is go up to the flight attendant counter and stand there and wait for them to take volunteers to check bags. I always want to be the first one to volunteer to do that, because I don’t really like asking people to help me. I shouldn’t be worried about that but I am.”

Jenni- “I think you should ask people to help you.”

Gracie- “I know!”

Jenni- “But that’s just me. *laughs*

Gracie- “And I do, I do. If I have to, I do. But it’s easier.”

Jenni- “And I know what it’s like to have an anxiety disorder, so yeah.”

Gracie- “It’s easier to get up to counter and just wait to to be the first one to volunteer for them to check it.”

Jenni- “And on this trip didn’t you get to skip the checked baggage fee because you did it as a volunteer?”

Gracie- “Yeah. Yep, yeah. I saved about $25, right. Also I’m always cold so I always have mittens, in my purse, at all times. I like to take the little folded up fleece blankets, because they fold really nice and teeny tiny on the air planes because it’s cold. Always have a coat.”

“And of utmost importance to me is don’t skimp on the vitamins. I like to try to pack light, but I always always always take my vitamins with me. Of course, take the meds that you need. And take extra, If you have to have them, or anticipate that you might, because traveling does cause more pain. I don’t really take pain medications, but I take precautionary ones with me on trips, in case I’m going to.”

Jenni- “Yeah, me too.”

Gracie- “But I never ever skimp on the vitamins because they, uh, keep me ahead of the game.”

Jenni- “Well that’s really good because traveling can be really really tiring. We have to take good care of ourselves.”

Gracie- “Yeah, it drains. It drains you. It’s not like your everyday living, you know?”

Jenni- “Right, right.”

Gracie- “You’re out of your element. So. That’s what i like to do when I travel!”

Jenni- “Thanks.”

*scene cut*

Jenni- “Okay so I’m here with one of my favorite chronic illness and chronic pain travelers. Grover. *points mic at toy on shoulder and make growling noise* I don’t know, I can’t do a Grover voice. *laughs* So one of my friends brings Grover with her everywhere she travels. And one of the coolest things I think about that is that she brings something really special, that is unique to her personality and reminds her of home. And is also distinctive and so everybody recognizes her, and recognizes Grover, and makes for a lot of fun. So make sure you include fun in your travel.”

*scene cut*

Jenni- “Make your hotel room your home. Bring your stuff in cute colorful bags, or whatever makes you feel at home. Bring snacks that you like. It never hurts. Travel in cute colorful bags that make you happy because you’re gonna be carrying that stuff all the time. Oh, speaking of carrying that stuff, ask for help. a lot of time you don’t have to carry that stuff. A lot of times someone will help you. Don’t be afraid to ask for help.”

*scene cut*

Jenni- “Hey everybody, I’m here with Cindy Steinberg.”

Cindy Steinberg- “Hey.”

Jenni- “You’re the director, national director of Advocacy and Policy for US Pain Foundation, right?”

Cindy- “Exactly.”

Jenni- “Cool. So what’s your favorite travel tip for chronic pain and illness management?”

Cindy- “My mat. My mat. I have a a camp mat that self inflates. I just roll it up, it’s really comfortable. And I need to lay down every hour for my back. So I just roll it up and I bring it with me.”

Jenni- “That’s so cool. And you’ve got pillows and stuff with you too.”

Cindy- “Yep, I take one of those carry on suitcases. Nobody knows what’s in it, it’s very light. It just has pillows and a mat.”

Jenni- “Super cool! I’m gonna buy myself one this week because Cindy’s been chilling on the floor whenever she needs it and I kinda want to be down here with her.”

Cindy- “Yeah.”

Jenni- “I don’t have a mat right now, it’s kinda rough but, we’re gonna fix that. That’s Cindy.”

Cindy- “You’re welcome.”

Jenni- “If you are at the airport and even if you’re like me and you’re not using a wheelchair or another assistive device, but you know that it helps you a lot to have pre-board so you can get on before other people and take your time getting settled. And on this trip especially, I was feeling really wobbly and exhausted so I really needed that.”

“Go ahead and ask for it. When you check in at the front desk, or when you get to the airport, or something you can call ahead. You can request wheelchair service, you can request one of those, I don’t know, little trolleys, carts, whatever they are, to take you to your gate. You can request pre-boarding, there’s no extra charge. Sometimes they’ll even let you check your bags for free when you ask for pre-boarding. It never hurts to ask, and it makes things so much easier.”

“And speaking of pre-boarding, and people’s conceptions of people with chronic pain. I got an opportunity to practice my one liner about invisible disabilities. *laughs* Because, as I was getting on the plane in Chicago to come here, they called for pre-board and I was walking past a woman, and she said, ‘That woman doesn’t look like she has anything wrong with her.’”

“And I just turned around and said, “Well you know, just because you can’t see anything, doesn’t mean she’s not disabled. Have a great flight!” And kept walking. And then she did not catch my eye when she got on the plane. So, you know, sometimes you have to educate people. It’s good if you can do it without being b*tchy, cause that kinda leaves a bad taste in people’s mouths. If you can do it gently but firmly and with a smile, you have the chance to educate people. Even if it’s a real pain in the ass sometimes. I mean I feel kinda shaky and weird after I said it, but whatever. I know I did the right thing.”

*scene cut*

Jenni- “Hey I’m here with Flora, she’s the director of ambassador integration for US Pain Foundation. She’s got on of her favorite travel tips.”

Flora- “Hey guys. What I normally do is I have a bag of all my clothes that I use as a carry on I tuck under the front of the seat seat. And then I just slide it a little bit so I can put my foot up on it, because my pain is in my left ankle, so.”

Jenni- “So it really helps you to keep your foot elevated?”

Flora- “Oh, yes. That way I don’t have the vibrations. And even if we hit any, uh, turbulence of something, it ends up diminishing that a lot and the vibrations really agitate my pain.”

Jenni- “I love it. I didn’t think about that, because vibration affects me too.”

Flora- “It really helps. I started doing it back in 2009, and I’ve never changed the process yet.”

Jenni- “I love it. Thanks, Flora.”

Flora- “You’re welcome, dear.”

*scene cut*

Jenni- “See this coffee maker behind me? Yeah I bring my own tea. Bring all the little things that will make you feel like you are at home. So bring your own tea, bring a little pot of honey, throw it all in plastic bags in your luggage. If you need to bring snacks, if you need to bring a candle to light in your hotel room. Please be safe about fire, but go for it.”

“Essential oils, a smell that’s familiar to home might really help you get better sleep if you rub a little but on your pillow. Do the little things that help you feel like you are at home. Bring your favorite pajamas. Make an effort to really get cozy.”

“When I get to a hotel, even if I’m super stoked to see the people I’m traveling with, the first thing I do is unpack all my bags. I run to my room. Well, I don’t run. Be real. But I go immediately to my room and unpack all my bags. Because I want to feel like this is my home away from home.”

*scene cut*

Jenni- “That’s my iPad charging. ABC- Always Be Charging. Look for outlets everywhere you go. A lot of planes have them on he planes now. Trains have them. If you take Amtrack a lot, Amtrack has plugs on all it’s trains right now. In the hotel rooms you can charge all he time. Always ask for free wifi, don’t settle for paying for wifi. There’s almost always a way around doing that.”

*scene cut*

Jenni- “Seriously. Always be charging.”

*scene cut*

Jenni *voice over*- “thanks for watching this week. I hope these travel tips help you a lot. Can’t wait to share more with you, and hear your favorite travel tips. So join us one the blog at chronicbabe.com to add your favorite travel tips to our list. Thanks for watching, and check out another video I just picked for you. And make sure you never miss out on the great stuff we have to offer. Subscribe to our youtube channel today. Thanks!”

*scene cut*

Jenni- “Beeep.”

*scene cut*

Shaina- “*unintelligible* in advocacy.”

Jenni- “Just stare at your boob for a second. Stare- *laughs* Should we do another take?”

Shaina- “*laughs* Should we do another take?”