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For those of us with severe disabilities that have left us mostly bedbound/housebound, the thought of traveling with a chronic illness and/or multiple chemical sensitivities can strike fear into our very souls.
Most of us are on a very strict schedule and the thought of leaving the safety of our routines can seem like the equivalent of climbing Mount Everest or taking on the Camino de Santiago. This was precisely the case for me as I faced the prospect of flying across the country to meet with a new doctor.
I had done my research, and I knew that he would be worth it, but how would I ever pull off traveling with a chronic illness? I had recently moved into a safer environment (from my home of 13 years which turned out to have mold) and had not recovered well from the move. I was struggling just to get through each day and take care of my most basic needs.
I’m happy to report that I DID pull it off with some extra planning and a few tips from friends; and, I know, that you can, too! This trip was a necessity for me, but it was such a success that it has given me a new confidence about traveling again! Maybe even for pleasure!
Based on my experience, I wanted to share with you what I learned about what to do as well as what NOT to do when traveling with a chronic illness.
Tips for Traveling with a Chronic Illness
Start Planning Early
The success of traveling with a chronic illness lies in making your plan very early. The lower your functioning level the further out you’ll need to plan. For me, I started thinking about this trip a few months before leaving, but if you’re functioning at a pretty high level, then 30 days should give you plenty of time to get everything together.
You’ll want to start thinking about your own health challenges and what you’ll need on a daily basis in order to make your trip a success.
It’s also a good idea to write everything down. I’ve learned to make notes on my phone, since I always have it with me which makes it convenient when I have an idea or a thought I need to remember. I also use “talk-to-text” to make notes which really helps me to use less energy. This is especially helpful since I am dealing with serious brain fog.
For me, I do specific detoxification therapies (coffee enemas) everyday and thought about how I would implement them on the trip. This was probably one of the most stress-inducing dilemmas, since I felt like I just couldn’t live without them, but it would be impossible for me to take along all of my equipment.
Some questions you might want to ask yourself when traveling with a chronic illness:
What is my daily routine?
What equipment/medications/supplements do I need on a daily basis?
What are my specific dietary and nutritional needs?
What additional challenges will this trip present?
What types of transportation will I be taking? plane? bus? cab?
What is my intervention plan if things go wrong?
Who am I traveling with and what do they need to know about my illness/schedule/interventions?
What is the worst case scenario and how would I deal with it?
What if I need to cancel this trip?
Of course, all of the planning in the world can’t predict everything that might happen. At the end of the day, it’s still a leap of faith to take a big trip, but you can minimize any surprises by making a detailed plan.
What To Do Before Flying
There are quite a few things that can threaten our health on an airplane. Flight attendants and passengers have been complaining about toxic air on airplanes for years. Some flight attendants have been very ill only to recover when they are away from their job.
Then, you have all of the germs from all of the other passengers as they breathe, cough, and sneeze all around you in a confined space. The food and water isn’t the greatest on the plane, either.
Finally, for those of us who are chemically sensitive and/or light and sound sensitive, there are the smells from the synthetic perfumes and deodorants from the other passengers as well as any fragrances used by the airline. The lights and sounds also bother me, so I had to try to minimize those as well.
There are a lot of threats on a plane; however, there are a few things that we can do in order to minimize the effects of flying for those of us who are chronically ill and/or chemically sensitive.
What To Pack When Traveling With A Chronic Illness
Of course, this will depend on your individual needs. For me, it was important NOT to check any bags and to pack as light as possible. I started weeks in advance by ordering any medications or supplements that I may need.
Next, I put all of my toiletries and cosmetics in the smallest possible containers. I put all of my medically necessary liquids and supplements in the smallest containers possible as well. It’s amazing how much space you can save by doing this.
I had my roller upright luggage, a large beach/diaper bag, and my purse. I was going to be gone for 5 days and 4 nights. The temps were going to be much cooler in Northern California, so I needed to pack a jacket (in the middle of July!).
In my luggage, I packed 2 pair of pants, yoga pants and t-shirt to sleep in (would double as extra clothes if necessary), 3 nice tops, extra t-shirt, jacket, 2 pair of shoes, toiletries, and liquids (including fleet enemas). I had the liquids on top, so that TSA could get to them easily.
Pictured below is what I wore on the first day, the clothes I packed, and how they fit in the suitcase inside a plastic garbage bag. Then, shoes on top of clothes in 2-gallon-size plastic bags, and then, toiletries, makeup, and medically necessary liquids.
In my beach bag, I had more liquids (including Homemade Hand Sanitizer and Homemade Sanitizing Spray) and medications, neck pillow, carbon mask, noise canceling headphones, sleep mask, snacks, EMPTY Travel Berkey water bottle, extra jacket and purse.
UPDATE! I cannot recommend the Travel Berkey Water Bottle. It didn’t hold up for me and leaked most of the time. I am now recommending this filtered water bottle.
Things I’m Really Glad I Had On The Plane…
Jacket, carbon mask, sleep mask, noise-canceling headphones, water bottle, snacks, Homemade Hand Sanitizer, Homemade Sanitizing Spray, Bee Propolis Spray, Biocidin Spray, neck pillow, and OTC sleep aid.
Before You Get To The Airport
Traveling with a chronic illness gets more complicated if you’re flying. It’s a good idea to book plane tickets 30 days in advance (or further) to get the best rates. If you want to use frequent flyer miles or convert hotel points into flyer miles then you’ll need to start even earlier (60 days at least).
Print TSA Medical Card – Go to TSA.gov. Click on “Disabilities and Medical Conditions”. This page will give you a lot of information about what to expect as well as how to prepare for the pre-board screening. Click on the “TSA notification card” link, and it will take you to a screen to type in the name of your medical condition.
You can, then, print it out and carry it with you to the airport. I found it helpful to laminate it, since I printed it on really flimsy printer paper. This card eliminates the need for you to have to explain your illness. Just show it to the screeners, gate attendants, and anyone else you may encounter.
Separate And Declare Medically Necessary Liquids – As is true for most of us traveling with a chronic illness, I have quite a few herbals and homeopathics in liquid form, so I transferred them into smaller glass containers (previously saved) and put them in a separate ziplock bag.
After speaking with a representative from the airline, I was made aware that TSA could confiscate any of them which caused a lot of anxiety before I got to the airport. However, I found that when I told them that I had “medically necessary liquids” and showed them my TSA card, it wasn’t a problem at all.
You can read about the 3-1-1 Rule Exemption here. Also, make sure that you declare any accessories and medical devices like freezer packs, IV bags, pumps and syringes.
Bring Along Any Other Paperwork (Just in case) – I had a copy of my disability determination papers as well as a letter from my doctor stating the nature and severity of my disability just in case there might be an issue. I didn’t need to pull them out, but I felt better having them along.
Call the Airline and Request a Wheelchair AND Attendant – If you have chronic fatigue or trouble walking because of your illness, then I highly recommend requesting a wheelchair AND attendant.
I called in advance to have this set up. However, the airline that I chose, Delta, scored a D- in this department. Out of six stops, an attendant only showed up at one.
There may have been a wheelchair sitting at the gate, but that did me no good, because I needed someone to push me and someone to handle the bags.
One of our connections was really tight, so we didn’t have time to call an attendant, and I had to maneuver it on my own which was really difficult. I recommend talking with a flight attendant and making sure that a wheelchair AND attendant will be waiting for you at the gate.
Check Into Travel Health Insurance – It’s not a requirement, but you may be glad you have it if you need it. Check with your insurance company to find out if they will cover you on a trip out of state.
If you’re traveling overseas, then it may be more important to get. Talk with an independent broker to get the best rates. Here’s a really good article that goes into more detail about the different kinds of travel insurance.
Tips For Staying Healthy While Flying
10 Days Before the Trip
For someone traveling with a chronic illness it is so important to start an intensive immune-boosting protocol. I have a friend and fellow FDN Practitioner who’s husband has been a pilot for 25 years, and she gave me her intensive immune-boosting protocol.
Immune Booster Protocol by Tracey Holekamp
Gaia Quick Defense (2 caps 5 x daily for 10 days before travel, then an overseas dose of 2 caps 6 x daily for the days before departure and 4 days after arrival)
For your healthy travel bag…
Just Thrive (good probiotic and antioxidant in one)
Oil of Oregano Caps (North American Herb and Spice) – natural antibiotic if you start to come down with something
Activated Charcoal (Whole Nature) – Great for food or alcohol poisoning, also great for upset stomach or eating a bad diet
Spray Bitters (Urban Moonshine) – There is an assortment of bitters for your specific needs whether it’s digestive help or help sleeping and everything in between.
Chaga Mushroom Elixer (Four Sigmatic) – To replace your morning coffee and boost your immune system
SurviMate Filter Water Bottle – To filter any water on the go
How I Stayed Healthy On The Plane
I started taking my Elderberry Syrup twice a day seven days before the trip. You can check out how to make it at home here. I also started using Bee Propolis Spray and Biocidin Throat Spray in order to boost my immune system and kill any infections before the trip.
I took binders (activated charcoal, zeolite, and chlorella) before boarding the plane and again when I got to my final destination. On the 5 hour trip from Atlanta to San Francisco, I put on my carbon mask, noise canceling headphones, sleep mask, and took an over-the-counter sleep aid to sleep as much as possible since our flight left at 5:25 am.
Do’s And Dont’s On The Plane
Do – Turn On The Air Vent. This may seem counter intuitive, but as it turns out, the air coming out of the air vent is NOT stale, recirculated air. According to Dr. Mark Gendreau, medical director of the Lahey Medical Center – Peabody Massachusetts and has studied how infectious organisms spread on airplanes,
“Ventilation on airplanes has gotten a bad reputation, but it’s completely unfounded”. You can read more about how outside air is brought into the plane and filtered here.
Do – Get A Window Seat – According to a study published in 2018 in the Proceedings of the National Academy of Sciences, people who choose window seats are less likely to pick up the flu or other pathogens on flights. It seems that most of the action happens closest to the aisle, so you increase your chances of staying healthy if you sit by the window and stay put.
Do – Sanitize Your Seat – Every time someone coughs, sneezes, or speaks, they launch their germs up to 6 feet which land on surfaces and stick. It’s much more likely that you’ll pick up something by touching surfaces than breathing it in. Wipe down your seat, armrests, and tray table with sanitizing wipes or a Homemade Saniziting Spray.
Do – Go To The Bathroom Before You Board The Plane – A smorgasbord of threats await the unsuspecting passenger in the airplane bathroom! E. coli and fecal bacteria are just a couple. The CDC warned that airplane bathrooms are a prime location to spread H1N1 and SARS.
Do – Ask The Flight Attendant NOT To Spray Synthetic Air Fresheners – They may or may not accommodate this request, but it never hurts to ask. I had my carbon mask which saved the day and filtered out all of the harmful chemical smells.
Do – Make Sure Your Carbon Mask Has A Good Seal – My carbon mask was a life-saver for me! I immediately started feeling ill from all of the deodorants, perfumes, and other synthetic chemicals I could smell. However, it’s not going to do it’s job unless it has a tight seal.
It took a little practice for me to get this right. I had to pull it tight and attach on the top of my head instead of at the back.
Don’t – Use The Airline’s Pillows & Blankets. Unless visibly soiled most pillows and blankets are reused on multiple flights. That means that you’re sharing a pillow with multiple people breathing and drooling who-knows-what… Yuck!
Don’t – Drink The Airline’s Water (including coffee and tea) – In 2004 a random sampling of 327 airlines found E. coli in the water tank. This water is used to make coffee and tea, but the temperatures do NOT get hot enough to kill the micro organism. Make sure to fill up your water bottle before you board the plane.
Don’t – Eat The Airline Meals – In 2009, Listeria was found in the food from a Denver airplane caterer as well as nasty kitchen conditions. You really never know how these meals are prepared, so stick with snacks you bring yourself.
Before You Get To The Hotel
Make sure you have a good understanding of how far in advance that you can cancel a reservation without a penalty. It may also be a good idea to talk with a manager to find out if there are exceptions for canceling at the last minute in certain cases such as death in the family or illness.
Beyond that, I have a few tips for traveling with a chronic illness that may make your stay at the hotel more tolerable and even enjoyable.
Ask For An Allergy-Friendly Room – So many people are traveling with a chronic illness, allergies, and chemical sensitivities that most major hotels offer this service. Of course this could mean many different things depending on which hotel you’re speaking with.
Some hotels have hired an outside firm to perform their 7-Step Patented Process to convert the rooms to PURE Rooms by installing air purifiers as well as spraying anti-microbials on all surfaces among other things. Read more about them here.
Some hotels have gone one step further to replace carpets and drapes with hard surfaces called Enviro-Rooms. Here’s an article on Hypoallergenic hotel rooms that goes into more detail.
Request Any Specific Items That You Might Need – Hotels are in the business of making YOU happy; so, most of the time, they are more than willing to accommodate any special requests that you may have when you are traveling with a chronic illness.
I requested epsom salts to be in my room when I arrived, because I knew that my aching muscles were going to need a soak after a long day of traveling.
Tell Them About Your Unique Issues – If you know certain things bother you, then let them know. For instance, I KNOW that I react to toxic cleaners and synthetic air fresheners. I let them know these things in advance, so that they could make sure that these things were not in the room.
If Possible, Bring Your Own Air Purifier – Update! Not long after this trip, I drove to the beach to spend a few days at a friend’s condo. I decided to bring along my portable air purifier; and, boy am I glad I did!
The first thing I smelled when I went inside was Clorox! The headache started coming on immediately. I went straight to the bedroom I was using and opened the door to the balcony to let in fresh air.
It has a true hepa filter, an activated charcoal filter, and ultra-violet light. It’s light weight and easy to take with you on trips.
Just remember not to run it while the windows are open. You don’t want to try to filter the outside air. It’s a losing battle, Lol!
What If I Get Sick On My Trip?
Make Sure You Have A Comfortable Place To Rest
Make Sure You Plan Plenty Of Time To Rest
Make Sure Your Traveling Companion Knows What To Expect If You Get Sick
Make Sure You Have All Medications, Supplements, And Equipment Necessary
Make Sure You Know Where The Nearest Emergency Room Is Located
Always Err On The Side Of Caution – What I mean by this is if there is any question about how something will affect you, play it safe by skipping it or weigh the risks/benefits before choosing.
The thought of traveling with a chronic illness and/or multiple chemical sensitivities can bring on immeasurable fear and anxiety while the actual trip itself may or may not be a stress-inducing activity. I found that once I got over the initial anxiety of the unknown, the proper planning allowed me to actually enjoy the trip and navigate any challenges that arose.
If you start planning early, pack efficiently with what you need, be prepared to encounter TSA, have what you need on the plane, have an allergy-friendly hotel room and a good travel companion, then traveling with a chronic illness could even be a pleasurable experience.
Whether you’re visiting family for the holidays or traveling to see a new physician, my hope is that this article will help you prepare and give you the confidence to travel with a chronic illness without all of the fear and anxiety that comes with the unknown.
What Do You Do To Stay Healthy While Traveling??
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