Traveling Tips for Flying While in PAIN

Traveling Tips for Flying While in PAIN

Traveling when disabled can be extremely challenging. To attempt to avoid chaos, confusion and potential disruption, a good deal of preplanning serves to minimize threats to an enjoyable and successful trip. No matter what your disability is, there may be a need to reach out for help and guidance to make the trip a success.

Suggestions that have helped me to ease the burdens:

MAKING THE PLANE RESERVATIONS:

  • Many times flights are made online so talking with an agent for the airlines selected after the reservation is made will help to iron out issues and set up ways to meet your needs. For me, it is the need for a wheelchair at each airport landing since walking a long distance is not possible. I also have a NEADS service dog and want to be sure they know she travels with me with her medical records and identification.
  • At times, I have paid the small fee to have an agent from AAA help me set the trip up to help get the direct flight, if possible and even select safe seating towards the front of the plane instead of the bumpy back that can actually cause my bones to sublux out of position.
  • Many times then the conversation explains the need as a disabled person, the airlines then has the handicap department call me to then be sure all that is needed to on record and set for me.
  • If we need to rent a car, I must be careful that the seat is not too high or too low. If I lift the buttocks up or dip down, instead of sliding onto the seat, the sacrum will slip out of position. So think ahead of cars that work for your condition to request instead of taking one on randomly.
  • When we need to rent a hotel room, I make sure they are aware of my medical issues that need to be shared like a service dog will be by my side along with requesting a handicap accessible room and one that isn’t way down the end of a hallway.
  • We always make sure the hotel we will be going to has a workout room and/or pool. I work out almost daily to keep my muscles strong to help hold the bones in position.

PACKING:

  • When packing for the trip, I make sure my medications are packed in the carry one bag, just in case of delay or loss of luggage. With that in mind, I always include a few extra days of medication in case things get delayed.
  • We also carry my bi-pap breathing machine on the plane. I would never take a chance of not having that to use. Any thoughts of it getting lost would be dangerous to my life.
  • For my service dog, I have her carry the individual packages of her food with her meds in the bag, so I am prepared to care for her with a possible delay too. And as with medications, I include extra food for her in case of delays, a water/food bowl, poop bags, and her identification and medical records in case ever challenged.
  • I also make sure to include food that I can metabolize. Many of us have issues with food and may not have luck finding something at the airport we can eat. So in this way, I have what is needed for the trip along with extra compatible foods and snacks packed into the check-in suitcase. Before I started doing this, I would come back from trips underweight from those few days of not being able to find food I could eat.
  • I pack bed lifts to elevate the bed I will need to sleep in. College students use them to lift their door beds to be able to store items under the bed. I use two on both front corners of the mattress to try to simulate the 30degree angle I sleep on at home to help prevent from passing out.
  • I pack a straw for drinking water since with a fused neck, bending the head back won’t work.
  • I wear a fanny pack around the waist to save the weight on the shoulders that would sublux and keep my personal items close to me.

CHECKING IN AT THE AIRPORT:

  • We tend to try to arrive early since it takes extra time being handicapped to get through the screening.
  • We always then check-in as soon as we get to our gate to be sure they have in their records that I have the service dog and the need of the wheelchair for all stops. When that reminder is made, we find ourselves being allowed first on the plane, giving us time to get to our seat safely, get our extra carry-ons in the bin and settled with the dog before others enter.
  • My understanding is coffee is a diuretic and flying dehydrates the body, so I stick with drinking water. I make sure I drink a lot of water on the way to the airport to get hydrated before even arriving there.
  • Upon arriving, since steps are a problem with my condition, I don’t look for a bus to get to our hotel. I find it is safer for me to climb into a taxi or some type of car transportation.
  • I keep an envelope in my backpack to hold all the receipts since most trips are due to medical traveling and can then be claimed when doing taxes.
  • Remember to stand your ground – I just this week had a medical trip all set up but when we got to the gate and it came time to push my wheelchair up to the door of the plane, the agent decided I needed to get out of the chair and walk up the steep ramp with my newly fused toe. He told me I was supposed to have called to request a different wheelchair. I did call and that was not brought up by them at all. How would I know how you are to enter each plane if they don’t tell me? I refused to be shamed into doing something that would cause my body to be more damaged and told him I wouldn’t and couldn’t do that for him. And I reminded him that I had done all I was to do and had called in advance to set all this up. Suddenly, he decided he could push me up the ramp after all.

Living with medical issues means more daily work to keep moving and safe. Traveling is no exception! So, think of all you need to pack and set up to make your trip as successful and safe as possible. It may be a lot of extra planning, but sometimes stepping away on a trip, even when it is for medical reasons, helps us to remember and experience life beyond our enclosed walls.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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M W

Great article! Some airlines allow you to book a 2nd seat if needed for your disability- extra equiptment, CPRS allodyina/hyperaglacia…many reasons for this. You pay to reserve the seat but it is refunded at check in.
Packing extra pillows for support, blankets, a larger eater bottle that I ask crew to fill are all helpful too.
A collapsible foot stool helps me sit in a muchbmore comfortable position. My feet don’t dangle, one can be up or down, and I’m not crossing my legs to get comfy. Moving around to get comfy can hurt, finding the right position helps!

Kristina Ruth Schultheis

I am so grateful for this newsletter.

Becca

PART TWO, continued from prior reply post….

Also, contact the TSA in advance. They have a program called “TSA Cares.” There’s an offshoot of that program specifically for disabled veterans like myself, but having done it both ways, it doesn’t seem to make a whole lot of difference which one you use. The phone number is all over the TSA website, particularly under the travelling with a disability section of the site.

You provide the TSA with your itinerary information. Depending on the size of the airport, they may have a personal escort from the TSA meet you when you arrive, or meet you at check in. Some smaller airports don’t have a rep on site, unfortunately. Their job is to help you get through security as painlessly as possible. On the phone, you can ask questions about how to pack, what things need to go where (you can verify medication packing info, though they will tell you to check each state’s laws on certain things as they can’t provide that kind of advice – medical marijuana being a prime example). You can provide info about who you are traveling with, what kind of supports you need, etc. Often they have pushed a wheelchair for me or carried extra bags. Sometimes, if it’s slow, they’ll take your boarding info to the podium and check you in with the gate person. They’ll assist you with any security screening needs, give you options for how to manage various aspects of navigating the airport, and so on. I have been able to work with them to help a member of my group get through security based on a photo I had of his ID when he’d lost his wallet because I was in touch in the TSA in advance and had explained the situation.

The TSA is very helpful if they know in advance what is needed. They are limited to airport and security issues though. Anything flight-related is directed towards the specific airlines to handle. With both types of services in place, I don’t have many issues as long as I arrive early nowadays. Hope this helps!

Becca

I have flown a number of times and travel by myself to work conferences since my pain and mobility issues have gotten significantly worse over the last few years. This is a two part reply (character limitations).

Birdie, this might help you some –

PART ONE
I was advised by the local police department (initially my query was about carrying my pain meds to work as I didn’t want to take my entire bottle of Norco to and fro out of concern for loss or theft). They told me to 1) Carry a printout from my pharmacy showing the current prescription along with other prescriptions that might be filled. You can’t always rely upon having an Internet connection available or a working website when you are questioned. 2) Take a few photographs of each prescription and store them in a folder on your smartphone for easy access. I take a photo of the prescription bottle with my name, Rx number, date, and med name clearly visible, along with two pills in front of it showing front and back. Not only does this permit easy identification if they get jumbled up in the shuffle, but it’s clear to see that what the pills look like matches the bottle’s description. I take multiple photos to ensure all parts of the prescription label are updated, and re-take the photos with the most recent prescription bottle label every time I get it refilled (ideally) or at minimum, as part of my pre-flight preparation. I also put each type of prn medication into a separate pill pouch that I clearly label with name, dose, and when I take it. I include a few extra pills in case someone decides they need to take one to test it or something. (Never happened to me, but the police said it COULD, so they thought that was a good idea too.)

(PART TWO in next reply)

Kimberly

I have been unable to sit without extreme pain since 2010. My dad found Southwest Airlines, maybe others do too, allows you to buy two (even three) seats for your disability. They also allow overweight to buy two seats under the disability policy as well. They don’t just allow you to purchase extra seats, but once you have completed travel you send them the used boarding passes for the extra seats and SOUTHWEST REFUNDED THE MONIES PAID.

Getting to the gate required the use of a wheelchair for a very painful ride. I would bring a yoga mat and go through hand-screening at the airport, requesting a private screening room, if desired. I would lay out the yoga mat and lie down. They could then check me by hand-screening.

Once through security, I would lay out the yoga mat in the handicapped early boarding line along with 4-6 pillows to elevate my legs. I waited that way until just before boarding. My Dad purchased lunch for us after security for the plane. I was not limited to the bags, pillows that I needed due to my disability. We boarded first always. On older planes, we sat in the bulkhead row, but the newer planes have food trays in between seats preventing lying down.

The first flight we asked, and I had to suffer sitting until we were at altitude. But realizing I met all the requirements when lying down immediately, I just did and did not ask permission. I was seat-belted in, the seats and tray tables were in upright positions. I was NEVER bothered to sit again. Upon boarding, I got a seatbelt extension. We lifted the armrests. I put a pillow for my head and then seat belted from the middle seat around my body to the aisle seat. My dad had the window seat and my pillows went on him after he was seat-belted. My legs went onto the pillows with clean socks against the plane. The time I had 3 seats, I found it too hard not having my legs held while landing- seatbelt did keep me on the seat.

I last flew 2014, check to see if still offered.

Ellen Lenox Smith

Birdie,
Excellent info that I should have included. My husband and I use to only travel with our actual prescription bottles but for the past few years, we have switched to traveling with our medication in the pill organizers. I put mine in my service dog’s jacket and my husband’s in the backpack. There so far has been no issue but if you want to be sure on the policy before travel, I would consider calling the airlines to clarify their rules. I have never had a doctor’s note except when I traveled with a treatment unit called the VECTTOR

R. Michael Maddox

I will be traveling to South Korea this summer to visit my daughter. I have bee wondering about medications. I take Morphine and Oxycodone. Are their issues with taking narcotics abroad?

Thomas Wayne Kidd

I do well to ride to my appointments every two months. Thanks for your tips.

nana

Start with what Ellen has told you- expect double hassle and maybe you will be close to expecting what will happen.
I have narrowed down USA airlines who are helpful.
United has small seats and are not happy/cooperative about moving you up front without a large charge.
American has a rule that unless your legs are fused *together* you don’t get “bulkhead* seating. I also have a fused neck and my doctors have told me to fly in that section. Stupid rule. They don’t have to conform by ADA guidelines they proudly say.
Delta was pretty good although they tend to be expensive. More than most. But not now.They advised me to pack my medicines and Bi-Pap in a large suitcase because carrying a small one through the airport is so painful I cannot do it. I am lucky to carry a small purse.
But last time going to the spine center in Florida the ticketing agent was a complete snot- embarrassing me in front of a growing line of onlookers. She advised me she would open and sift through my bag in front of these new friends. I said I would just pay the fee to check it through. No she would call a manager, who started over from beginning in front of the evergrowing line. Again I said I would just pay for the bag. But no they wanted me to be held up for ridicule. He assured me that “this one time” he would “comp” the bag but had to lecture me ad nauseum. Believe me I was nauseous as I left.On the way home I called and said I wanted to pay for my previously arranged bag. I explained what happened on the outgoing trip. She assured me I should just leave the bag as is that I would be ok. When I arrived for the trip home the scenario replayed itself over again. 30 minutes of embarrassment and lecture. I should have insisted on paying the $30 fee. They gave me a $100 credit but, really? Fly again? I would almost rather die.Plan ahead. Call. Have them make notes on your reservations. But take extra money. Expect awkward long lasting moments.There is little compassion and no customer service.

Maureen M.

I haven’t traveled outside of my ‘county’ for 7 yrs! due to increased pain from all that it entails. I need to lie down on a soft surface several times/day.
I sadly miss out on visiting family/old friends plus seeing my daughter/grandsons in Calif. but I just can’t put myself through all it anymore. Although, I would ‘possibly’ attempt it if I had a travel companion to help me through it.

Bridie

I get carrying your meds with you on a plane but what more should I know about flying with pain meds would be useful. Can you put it in pill organizers or do you have to keep it in the original pill bottles in order to get through security. Do you need notes from your doctors to verify your use of highly regulated pain meds? Can someone write about those experiences and regulations?