Travel Tips for the Chronically Ill or Disabled

 


Even if you no longer go on vacations, there may be times you must travel for business or to attend family events. Leaving home for any reason, especially when traveling by airplane, requires careful planning as we are required to bring more items from home and need to fit them into less luggage. What follows are some suggestions for how to get from here to there.

What to Pack:
One of the biggest challenges is bringing everything you need and still be able to fit it into a regulation-sized carry-on bag plus one check-in suitcase that weighs less than 50 pounds when packed (airlines will assess a fee if your bag weighs more).

Let’s start with the carry-on:
Meds. To save space, you can use pill organizers, but ONLY if you are traveling within your own country. If you are going to ANY foreign country, your meds MUST be in their original prescription bottles. If you take anything that is absolutely essential; such as heart medication, insulin, etc., bring extra prescription forms in case your medication is stolen, lost, etc. so you can get these refilled. Warning about the pill organizers: they tend to come open during long flights, so store them in zip-lock bags in case that happens. If you require anything that might be suspicious to security, such as needles, bring a note from your doctor stating the necessity of these.

Wearable air purifier. Airplanes recycle their air, and it only takes one passenger with a cold to put you at risk for catching it. I bought a small air purifier that I wear on a cord; this blows clean air into your nostrils, and if I add a little water to it, it provides some much needed humidity too. Put it on as soon as you’ve gotten to your airplane seat. I have shown mine to curious flight attendants and security personnel and have had no problems.

Shampoo, soap, lotion. If you can tolerate brand-name stuff, buy travel size, purchase it after you arrive, or use what the hotel provides. If your health condition requires special products, you can buy empty small plastic bottles and pour your shampoo or lotion into them. I avoid bringing full-sized bottles with me because of the weight. Put all bottles in zip-lock bags so they won’t explode in your carry-on and make a mess.

Pillow. If you require a special pillow, bring it in your carry-on, but see if there is a travel-sized one available.

Small first aid kit. There are travel-sized ones available; if you have an old one, check it to make sure nothing is outdated and that you still have band-aids.

Moist heat packs, wearable thermal patches. Obviously, only bring the heat pack if you’ll have access to a microwave. I like to heat them up and use them at bedtime to help me get to sleep. The thermal patches weigh less and are more convenient than pain-relieving gels or creams.

Sunscreen. If your illness makes you photosensitive and you’re going to a tropical location, you’ll need waterproof SPF 50.

Special eye drops, mouth products, or other OTC items you need to treat your illness. Don’t assume you’ll be able to find them easily in your destination, unless you are going to a large city.

Camera. Security won’t take responsibility if you put it in your checked bag and it becomes damaged, so put it in your carry-on. I recommend digital, if you have it, so there is no chance of x-rays exposing your photos. Also, digital cameras usually weigh less.

Other stuff. Think small and lightweight, travel-sized if you can find it. For instance, I have a tiny hairdryer that folds up and zips into a case. Small travel alarm clocks are handy. Put stuff you don’t want to get wet, like cotton swabs and feminine protection, in zip-lock bags. If you can’t do without makeup, choose one tube of lipstick, one color eye shadow, etc. Don’t forget your toothbrush and a case to carry it in.
Now for your suitcase:
Deliberately under-pack when it comes to everyday clothing. For long trips, plan on wearing each outfit more than once or doing laundry at some time during the trip. The only exception I make is socks and undies: I do bring enough for a fresh pair every day.

Plan for the extremes of the climate/season in which you’ll be traveling. For instance, winter in North Dakota requires a heavy jacket, gloves and hat. Bring clothes that you can layer, like a tank top with a matching cardigan that goes over it. Don’t forget that even desert/tropical climates can have excessive air conditioning indoors, so bring a lightweight sweater if you chill easily. A fold-up umbrella and hat to protect you from the sun can be godsends. Be sure to bring a pair of comfy sweats or shorts and a t-shirt or sweatshirt for lounging.

Don’t forget night apparel if you’ll be staying with relatives or friends. For summer, an oversized dark t-shirt and shorts should do. If you’ll be spending a lot of time swimming or at the beach, bring two swimsuits so you can have one to wear while the other is drying. When I went to Hawaii, I also brought two pair of aqua shoes. Bring kitchen trash bags to put wet suits or shoes in if you have to travel before they dry. Bring a suit cover-up if you’ll have to walk a long way to the pool or beach.

Bring a good pair of walking shoes and a pair of dress up shoes. Don’t forget panty hose if you’re bringing a dress or skirt.

The less you have to fuss over your clothes, the better. If something wrinkles easily, consider leaving it at home. Some items you can steam in the shower without having to iron them.

Make sure you leave some empty space in your suitcase because you almost always return with more stuff than you left with, due to shopping and souvenirs.

Airports:
If you fatigue easily or normally use a cane or walker, by all means consider using a wheelchair in the airport. This is no time to “tough it out” and risk exhausting yourself to the point where you won’t be able to enjoy your destination. This is especially important if you will be leaving from or arriving in a large city. With increased security, there is no easy way to predict how long you will have to wait in line. Also, check-in can easily become backed up with just one cancelled flight. I have not taken advantage of wheelchair service and lived to seriously regret it….last year, I returned to my hometown from an out-of-state funeral, and the plane pulled into gate 64, AND the escalators were out of service! I figure I walked at least two miles to baggage claim, limping most of the way and in tears from pain. Some airlines offer express check-in if you have purchased your tickets ahead of time. This saves a lot of waiting.

The less complicated you make things for security, the better. Try not to have more than two items to keep track of: just a carry-on bag and either a purse that you can wear or a jacket with pockets. I use either a fanny pack or a lightweight flight bag that I wear diagonally from shoulder to opposite hip. These keep my hands free for my carry-on bag. I don’t bring jackets along unless I can wear them without being too warm, because I tend to leave them someplace when I am distracted. Most airports require you to remove your shoes when going through security, so consider wearing shoes you can easily slip on and off. This will save you looking for a place to sit to tie or buckle your shoes when you need to put them back on again.

Take advantage of baggage carts, or, if you can afford them, sky caps. Managing more than one bag without a cart will use up spoons you’d rather save for fun things. If you’ll be taking a shuttle someplace, bring enough small bills for tips and let the shuttle operators load and unload your bags.

On the Airplane:
When booking your flight, consider the advantages and disadvantages of direct flights vs. connecting ones. If you have a connecting flight and your first flight arrives late, you may find yourself having to run through an airport to catch the second plane. Direct flights avoid that problem but require you to sit still for longer periods on the plane, which may be difficult. And remember that if you have to spend all day catching various planes to get to your destination, you may be completely out of spoons before you even get to your destination.

Try to board early if you have mobility problems so you won’t have to rush getting to your seat.

Do not sit in an exit row unless you are physically capable of opening the emergency door and assisting other passengers. If you are inadvertently seated in an exit row and should not be, please ask to change your seat before the plane takes off.

If a flight is not full, and you will be more comfortable with an empty seat next to you, ask if you can arrange that.
Put your carry-on bag under the seat in front of you if possible. I have injured myself trying to get carry-on bags in and out of overhead compartments.

Don’t forget anti-nausea medication for your flight if you require it.
Chew gum during takeoff and landing to minimize ear pain and
congestion/popping ears.

Be aware that flights under three hours in the US no longer serve meals. You may luck out and get a sandwich, or you might be handed a few peanuts and have to make do with that unless you bring your own food. If you must eat frequently for health reasons, bring something to snack on. For short flights, I prefer health bars because they are so portable. Avoid chocolate-covered snacks unless you can keep them cool.

Even if you are offered a soft drink on the plane, make sure you have bottled water with you as the air is so very dry and you can become dehydrated much faster than you think. Avoid drinking alcohol on the plane as this will dehydrate you as well.

For long flights, if you require a diabetic, low sodium, high protein or vegetarian meal, request it at the time you book your flight. If you require gluten-free meals, most airlines no longer offer them, even if you write them nice letters and explain to them how easy this would be for them to do. And some flight attendants don’t have patience with special requests. One told me I should have requested a diabetic meal because she didn’t know the difference between gluten and glucose! So those with celiac disease or wheat allergy must bring their own food. Here are some ideas for hassle-free, gluten-free travel foods: organic jerky, small bags of baking nuts, plain corn chips, baby carrots, apples, canned peaches or pineapple with pull-top
lids, small cans of tuna with pull-top lids. If you bring an insulated lunch bag, you can add things like yogurt or cheese.

Once the “fasten seat belt” sign has been turned off, get up and stretch frequently, especially on long flights, even if this annoys the flight attendants. An aisle seat may be best if you don’t want to climb over other passengers. If you are prone to lymphedema, wear support hose. Do what you can to avoid problems with circulation, fluid buildup, joint or muscle problems from immobility. Many airplanes have the air conditioning up high, so if you are sensitive, wear a long-sleeved shirt on the plane. I wear something with sleeves that I can roll up, should it get too warm.

Accommodations/Dining:
If you require special meals, must eat more than three times a day, or simply do not have the energy to go out to eat frequently, consider renting a condo. Or, barring that, a hotel room with a mini fridge and a microwave. That way, you have more control over when you eat, what you eat and how much. I have a friend who brings a special pancake mix from home. She buys eggs and milk from the grocery in her destination city and stores them in the mini fridge and cooks the pancakes in the microwave. Voila! A hot breakfast without leaving the room.

You don’t have to wear yourself out cooking, either. When I’ve rented condos, I would buy enough food to cook once a day and snack two or three times a day. I would make easy things like scrambled eggs, broiled chicken, steamed asparagus or corn and snack on stuff like shrimp cocktail from the grocery store, fruit platters, cottage cheese or popcorn.

If you consider eating the local cuisine to be part of the travel experience, go to restaurants for lunch instead of supper. The wait is usually less, the prices lower and the portions not excessive. Of course, if you can’t finish your meal and you have a fridge where you are staying, you can just take the leftovers with you. When I went to Hawaii, I would eat out once each day or every other day, and would order a different kind of local fish each time.

When booking accommodations, request rooms on ground floors or near elevators so you don’t have to haul suitcases up any stairs. You might also want to check the proximity of grocery stores, laundry facilities and parking to where you will be staying. Remember that hotel staff’s version of “easy walking distance” and your version may differ. I found this out when I had to walk six blocks to get groceries and then had no energy to carry them back. And don’t forget to request a non-smoking room if you are allergic.

Consider staying someplace with a pool, hot tub and/or exercise facility. These come in handy if you’ve been sitting in planes all day and need to rid yourself of stiffness and soreness. I find that when I’ve been sightseeing all day, if I don’t soak in a hot tub before bed, I’ll get leg cramps that will keep me from getting any rest at all. I like to stretch in the pool, maybe do a lap or two if I’m up to it. Private Jacuzzis are awesome, but they can make the room or condo costs too high.

Sleeping in a strange bed can be difficult for a healthy person. For someone with chronic pain, it can be impossible to get any rest on the bricks that pass as hotel beds. This can make or break a vacation. So if you cannot tolerate an extra firm mattress, as soon as you have dropped off your luggage in the room, head to the nearest Wal-Mart/Target/K-mart and buy a cheap egg crate mattress topper and put that between you and the mattress. You don’t have to take it with you when you check out.

If you have trouble remembering to take pills, put on sunscreen or various other health related things while on vacation, plan what you will need a day ahead of time and place these things where they normally are in your home or at least in plain sight. I have a horrible time in order to get going in the mornings, so if I have a tour or need to check out early the next day, I shower the night before and just get my hair wet the next morning to save on prep time. I also have a Boost drink available for breakfast. If I am going someplace the next day that I am unfamiliar with, I check maps, mileage etc. the night before. And the night before I check out to go back home, I pack up as much as possible and have everything that I will need in the morning in plain sight so I won’t leave anything under a bed, in a drawer, etc.

I’m hoping these tips will take some of the negative stress out of traveling and leave you with more spoons so you can enjoy yourself. With some planning and organization, travel can be a delightful adventure. Go out and explore!

Written by Guest Author, Karen Brauer

©2019butyoudontlooksick.com
  • JCA

    You forgot to mention those of us with respiratory issues; asthma and COPD here. A travel nebulizer is essential. I have a pair of Pari Trek S nebulizers. They can be powered via AC (110-220VAC), 12VDC (auto, boat or airplane) and have changeable rechargeable battery packs. It’s probably I’m able to fit two weeks worth of nebulizer medication and all of my other meds along with a pair of epipens for a two week trip in a 19 – 20 inch rolling backpack. That bag easily meets with the carry on size parameters. I can either roll the bag, sling it over my back or carry it by one of the handles. The bag also fits in the leg area of the passenger side of the front seat of most vehicles.

  • LeahIsMagical

    Great post! Using an air purifier is a really good idea. What air purifier do you use?

  • Morgan

    This is so helpful since I hope to soon be the proud new owner of a service dog 😀 and I was anxious about brining medications on a flight

  • Popo

    I would like to rent a condo or apartment next winter in. Santa Monica CA
    I need one with a walk in shower and bathroom bars.
    How do I find a list of this type of rental

  • lcb22

    I travel with icy hot wraps, they make the flight bearable, without it i don’t think i would be able to do it. I also use the instant ice packs, the ones you crack with your hands and then they become cold. They also have instant heat packs, some people use them in winter for hand warmers. those woul dbe great too for a flight for joints. The ice hot wraps come in sizes for knees, elbows, or any joint, and you can just slip them on under sweatpants (I wore sweatpants on purpose so that I could apply the icy hot wrap)- as the air pressure during flights I find makes the pain MUCH WORSE, and it saved me. I brought some for knees and hands and it changed everything. i would highly recommend this to people.

  • good idea for our next article!

  • Good article, except I was hoping for a section about traveling with a power wheelchair.

  • Bill

    Just a thought or two.. great info really!
    Should also take into account when booking the flight do check the travel time not just the flight time.. almost impossible to get a flight without any stops, except from hub to hub, and if you’re booking online out of a half dozen flights the total times can vary by hours.. hours you’ll spend in uncomfortable chairs.

    Karen, apologies but please remember for some the stretching option is one we’d love to have but don’t..

    Bad Vibrations.. if suffering from an illness that makes contact painful you will not enjoy the take off or landings.. and sometimes not much else of the flight. Despite the plane makers best efforts all the power of those jet engines will shake things in the cabin up a bit.

    Finally, if swelling is an issue be prepared the cabin pressure can be the equivalent of 5400 to 7000 feet above sea level.. so you’ll swell more. I know this for a fact I’ve got Complex Regional Pain Syndrome (CRPS/RSD) and my last flight (Oct 2009) I contacted the airline for wheelchair service throughout (extra tip here, Confirm, confirm, confirm!) BTW if the airport has red cap curb service your airline can have the wheelchair pick you up there as well (otherwise have whoever is helping you step into checkin and let them know. Swelling was an issue even in the slip-ons I was wearing, and even with the shortest actual travel time selected the day used way too many spoons..

  • Karen Brauer

    Thanks for the additional tips. This article was written in 2004, before the limitations on liquids. I wrote a more recent one about the new restrictions; to find it, simply do a search on my name and it should come up.

  • Gaye

    Thanks so much for all this usefull info. It has indeed been some time since I had traveled and the first since being this sick. My Daughter and I will be attending the EDNF conference in Baltimore this summer. Thinking flying there, train back. About the same cost for the distance we are going.

  • Stephanie Schiffman Marushia

    FYI – These days security doesn’t let you through with any liquids, so you might as well save yourself some hassle and just make sure you have enough money to buy a couple of bottles of water and some snacks when you get through security. I always go the websites of ALL the airlines and airports I will be using while I travel to double check what the latest security restrictions are.

    I always makes sure I have some good books to keep me distracted from pain when travelling. It’s not quite as bad if you are delayed or have a long plane ride if you can keep your mind off of your body with a good book.

    The most important tip for me is comfort! I used to prefer to dress nicely when I travel, now I make sure that I wear loose fitting, comfortable clothes that I won’t be dying to get out of half way through the flight.

    At this point we really try to avoid planes, it’s gotten so impossible to travel (and expensive since many airlines are charging for carry-ons AND checked baggage even if you only have one) that we just try to drive so we have the wheelchair life in my van available and can leave early if my health requires it.

    It’s a good idea to try to find some local disabled bloggers to the area you are travelling to or try to find a message board for a local disabilities community so you can get more information on where to go and where not to. You might want to plan travel as far in advance as possible in the off chance that you can rent a van with a wheelchair lift (it’s rare, but we’ve managed to find one once so I could use my motorized chair). Also find and print out the local bus and subway schedules and call to make sure that all routes that are marked with a wheelchair icon are actually still in service or functioning. With all of the budget cuts states are facing many services for the disabled have been cut and they don’t always update the website to reflect that.

    To avoid stress, I always put together a travel packet of places we want to go with directions & phone numbers, confirmation numbers, contact info for friends in the area, maps and directions, coupons I find online, and some general info about the area to keep my 5 yr old interested in the local sites (he loves random facts and history). Anything I can do to reduce problems and stress when we get there is a “spoon multiplier!”

    Hope this helps.

  • MrsH

    Airplanes do not recycle their air.

    Fresh air from high altitude is brought into the engines, compressed, then decompressed into the cabin with bleed valves.

    The cabin altitude is maintained by a series of outflow valves that are louvered, not unlike a window shutter.

    Breathe with confidence. However, you are locked in with a couple hundred strangers, and you have no idea what they may have.

  • Mary

    One minor correction: it does not make sense to buy full-size shampoos and gels these days because security won’t let you take them through. And a full-size bottle with liquid in your checked baggage is an accident waiting to happen, given how baggage handlers treat many bags. I have had both sunscreen and shampoo smeared over my clothes, and it is no fun.

  • pris

    these are great tips! i also like to have a hand towel in my purse to roll up and put behind my neck. use ‘hidden’ places to pack small things, like socks in your shoes, small things in pockets, and put tissue paper or dry cleaner bags between clothes so they won’t wrinkle. then you don’t have to worry about ironing when you get to your destination. if i am going to a place that i know won’t have washcloths, i buy a pack from the dollar store and throw them away each day.

  • Kitty

    I wonder if it would be a good idea to just bring controlled substances such as narcotic painkillers, amphetamine medications, and muscle relaxers in their original Dx bottle, rather than putting them in a pill box?

  • Jonis

    Great advice! Another thing to consider is asking for a handicapped room in a hotel. Being a handicapped room, it will be on the ground floor, unless there’s an elevator and I’ve found that handicapped rooms are cheaper than regular rooms for some reason. Inquire ahead about this, but I used to work as a front desk clerk at several hotels, and was in a wheelchair full time at one point. I’ve never even been on a plane, and don’t get to travel much at all, but someday! I want to go to Bora Bora. 🙂

  • I have MS an my husband and I are full-time travelers. This article is such a good start but there is so much more info that needs to be shared.

    Initially – carry a letter from your doc explaining your condition and that you need to get up often while on a plane, or may have to use the toilet even when the seat belt sign is on (this is also useful in cities and towns where public toilets are not available and you want to ask to use the restroom in a shop or restaurant where you are not eating. Try to think of all the symptoms you have that might require special circumstances and have those covered in the letter. It often helps if you write the letter so all the doc has to do is transfer to his stationery and sign.

    Always tell your travel agent, airline, hotel restaurant whatever that you have special needs. You will be surprised how often things you need caan be taken care of.

    I can pack for 6 months in one suitcase. Consult Rick Steves, look for travel clothing in catalogues, do internet searches, ask friends who travel how to pack the absolute least amount possibles.

    If you are a woman, discover Trish McEvoy, an absolute makeup packaging genius.

    Also, I travel with 6 months worth of meds including syringes and I have never ever had a problem.

    It is not a bad idea to carry a cane or something similar even if you don’t need it – sort of like an “I may need assistance” sign.

    Keep up the good work.

  • Crystal

    I have discovered that Southwest does not charge for the first checked back so to save spoons and the fact that I’m short enough I have a hard time reaching the overhead bins I just check my bag and make sure my meds are in my carry on. I use a knitting bag that zips at the top, I carry meds, a ziploc bag so I can get ice once the plane lands (I need to wear ice most of the time to help control pain), mp3 player and ear buds to dim the sound of the engine and a book to read. I discovered once when my battery went dead that the earbuds alone will work ok to dim some engine noise. I usually carry a snack but not always, and most of the time have something to drink. A sweater is always a good idea, knitting to occupy my hands (scarf usually). Oh and a watch to make sure I don’t miss a dose of meds, I always seem to get a flight where I’m taking them in the air. I do the same kind of thing for car travel but I have relaxing tea in a thermos in case the day is too much and I need to sleep before the pain gets bad.
    Also pre-medicate for pain if you can. This has allowed me to enjoy going out with my boyfriend, usually works best if I’m having a normal to good day to start.
    Some airports have the rolling sidewalks (can’t remember the name) those are great if you normally don’t have a problem walking but still want to save spoons.

  • This is great advice for all travelers!

    I generally have no problems walking, but it’s really hard to go fast, especially with a suitcase.

  • Marcia Keil

    Wow, Thanks this info is very good. I do like to travel, but it is hard when you have fatigue, food& water at certain times. Really hard to fly as there is so much walking sometimes.

    Thanks

    Marcia Keil
    Des Moines, IA