Travelling with a chronic illness

Hi Frugalistas!  Regular readers may recall that I was diagnosed with a chronic illness last year.  Some readers will also know that in my non-blogging life I am a medical practitioner.  While I am now well, and my situation is very manageable it has changed the way I need to think about travel.  As well as regular medication, I now need to take extra care with things I do while I travel. I also need to plan ahead more with what I pack.

bottles of tablets, with some pills spilled out

Photo: Wikimedia commons

So combining my healthcare and travel expertise, here are my tips for travelling with a chronic illness.  A note of caution, though:  my thoughts are general in nature, and are not designed to be, nor should you consider them to be specific medical advice.  At all times you should consult with, and take advice from, your own healthcare provider, as they know you, your disease, and your treatment best.

Preparing your medications

If you need to take multiple medications, make a packing list just like you would for your clothes.  Include your regular medications, plus any medications you may need to manage exacerbations of your disease, and/or any medications you need to manage the side effects of other medications.

Make sure you keep your medications in their original packaging.  Not only will it be easier for you should emergency strike and you need to seek medical attention, you will be less likely to draw unwanted attention at border crossings.  I have one particular medication that comes in a huge box.  I do pack that particular drug out of its box, but leave it in its (also huge) blister packs.  I keep the bundle of blister packs together with a hair elastic.

Calculate how many doses you need to pack, then add a couple more days in case you are delayed or you become separated from your luggage.

Packing

I like a plastic ziplock bag for storage of my medication.  Not only is it easy to see what is in my bag if I am checked by Customs, it takes up little space.  If you check your luggage make sure you pack everything you may need in transit in your hand luggage, and allow for extra doses in case your luggage is lost.

plastic bag filled with medications in blister packs and bottles

My own medications ready to go
Photo: frugalfirstclasstravel

If you use a dose box packed by your pharmacist or carer, ask your pharmacist about Webster or other pre-packing systems that may cut down on your packing.  If you need some form of pre-packaging, get a letter from your pharmacist to that effect.  If you are using some form of dose packaging DO NOT stop that – you may not be safe.  Stick to your normal routine and don’t worry about the extra packing you need.  It’s not worth the safety risk.

medication blister pack

Photo: Wikimedia commons

Information to pack

If you require medication that has a very specific or complicated regime (steroids such as prednisone is a good example here), take a copy of your dosing regime.  Not only will it help you manage your disease more effectively, it will be safer if you have even familiar instructions written down.  Similarly, if you do need to see a doctor while you are away, it is handy to have your regime with you, as dosing regimes can vary from doctor to doctor (and even medical culture to medical culture).  If you become very unwell, having to remember complex treatments may be more difficult, so having it documented is one way to avoid that problem.

Have a letter from your doctor outlining your diagnosis and medications – both your regular medications and any other drugs you may need from time to time.  This can be handy at border crossings, or if you become unwell while you are away.  If you are travelling overseas, ask your doctor to make sure all drugs are written as generic names rather than brand names.  Brand names vary from country to country, generic names don’t (allowing for linguistic differences).

A word about narcotic, anti-anxiety and other drugs of addiction

If you need to take opioids, benzodiazepines or any other drug of addiction you need to take extra care.  Laws vary from country to country as to what you can and can’t import, or have in your possession.  Some drugs you are used to taking may be illegal in the country you are visiting.  If you are unsure check with authorities before you leave home.

It is particularly important that you have a letter from your own doctor about these drugs, particularly if you are carrying them in large quantities.  Make sure you get a letter that explains exactly what medication you have, what your diagnosis is and what your dose is.  It is also important that you get an up to date letter for these drugs each time you travel.  Having worked as a family doctor in the past, I was always suspicious of patients from out of state or overseas with old, tattered letters detailing their need for narcotic analgesia or large doses of benzodiazepines.

Travelling with injectables

If you have an injectable medication you need to think differently again.  You have needles and syringes to carry and dispose of.  You may need to keep your medication refrigerated.  If your medication requires refrigeration, check with your pharmacist about how to store your medication safely for your journey.  Check with your airline and hotel to ensure they can accommodate your needs.  This is one time not to worry about sticking to just one tiny bag – if you need separate, specific baggage you must follow that advice.

person drawing up drugs with a needle and syringe

Photo: Wikimedia commons

Make sure you have sufficient needles and syringes for your trip, or do your research about accessing them while you are away – some countries do not allow over the counter purchase.  If your condition has a support organisation they may have advice on that. Have a letter from your doctor or pharmacist outlining your need for needles and syringes.

Taking care of yourself

We all love to eat differently and get involved in different activities when we travel.  If you are travelling, you want to get involved rather than stand back on the sidelines.  If you have a chronic illness you can still eat and do what you want, but make sure you understand what you can and can’t do, and what precautions you need to take.  If you need to follow a specific diet, follow it.  If you need to take precautions against the sun due to photosensitivity caused by your medication, slather on the SPF50, and cover up – but enjoy the beach!

Italian villa perched on a cliff overlooking the water

On the road to Portofino

Know your body and your disease.  If you know it’s time to rest, make sure you do.  If you know you just can’t eat or do certain things, then don’t.  If you feel yourself getting sick or your health deteriorating, take action early rather than waiting till you are really sick.  That’s no fun for anyone.

Make sure you have travel insurance and that your insurance covers your condition.  Even if your premium is more expensive, don’t omit information from your insurance application.  It’s false economy.  Carry your insurance details with you.

Many chronic diseases will have a support group.  Use their resources and online forums to ask questions and get advice from people who’ve been there and done that.  Check whether there is a support group in the country or countries you are visiting – they can be a tremendous resource to give you a feel for what resources may be available to you to access while you are travelling.

Learn the name of your condition in the country you are visiting if English is not widely spoken.  If your condition means you need to have ready access to particular facilities (such as a toilet), learn the word for that too.

Travelling with a chronic illness does not mean you should not travel easily and safely.  Like most things connected with travelling, plan well, be organised and consult with the experts before you go, and you will have a brilliant and safe trip!

If you have a chronic illness or travel with someone who does, what are your best tips for safe and healthy travel?

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23 Comments on “Travelling with a chronic illness”

  1. Lady Light Travel 05/05/2014 at 8:10 am #

    My Dad had chronic lymphocytic leukemia (chemo drugs – esp. Leukeran), a Jerusalem valve in his aorta (Coumadin), insulin dependent type II diabetes (3 different insulins), and skin cancer (multiple salves). We traveled with two (not one) carry on sized roller bags – one for clothes and one for the condition. We did the following:
    * Call ahead of time to hotels airlines, etc. to let them know your needs.
    * Try to find out pharmacies and hospitals in the area ahead of time.
    * Give yourself a lot of extra transit time to go through security checkpoints. If you don’t need it then use it for rest time.
    * Plan on blocking out rest times on travel days. Travel upsets a “normal” body, and really upsets a “sick” body.
    * Dad always carried a small electric blanket. His conditions made him cold all the time.
    * We used a pill organizer to store all the pills. This one had morning noon, dinner, bedtime and was good for a week. It was flat and slid into the outside pocket of Dad’s suitcase. With travel comes non-standard schedules and it was easy to see if the dose had occurred (or not). I hadn’t heard of a Webster pack, but that seems to be a better solution.
    * For the insulin and leukemia drugs, we used a portable cooler designed to keep soda cold. It could run off the automobile power port or off of a wall socket.
    http://www.wagan.com/index.php/2260-6-liter-thermo-fridge-warmer.html
    We also used blue ice in the cooler to ensure that things stayed cold while the unit was off/unplugged.
    * We used a plastic soda pop bottle with screw cap for storage of used syringes. We kept this hidden in the luggage so not to upset housekeeping. We dumped the contents into the regular disposal system when we got home.
    * Night lights and portable grabber rails if needed!
    http://tinyurl.com/kfazfc8
    * Try to get your drugs at a pharmacy that is part of a national or international chain. My Dad was at Rite-Aide (US) but when he needed drugs while visiting me they had all of his medical info on the computer.
    * We used the computer to create several wallet sized handouts with drugs and dosage schedules to hand out to doctors to keep. They would usually attach it to Dad’s chart.
    * In the Contacts section of your smart phone program in “In Case of Emergency” put the phone numbers of your doctors, pharmacies, insurance info in there too.

  2. frugalfirstclasstravel 05/05/2014 at 8:12 pm #

    Wow, that really is travelling with a chronic illness. I love how you’ve accepted that Dad needs an extra bag for his gear, no questions asked. The advantage of the Webster blister packaging is that you can discard each card as it is finished the same as any other blister pack.

  3. Great information! I was a pharmacist in my former life (before becoming a perpetual traveler) and all of your advice is well thought out. One extra thing we like to do is exchange lists of our medications, health conditions and allergies just in the event of an emergency trip to a doctor or hospital.

    • frugalfirstclasstravel 06/05/2014 at 6:15 am #

      Thanks. Keeping lists of meds for each other is certainly a good tip if you are travelling with someone else.

  4. Suzanne Fluhr (Boomeresque) 06/05/2014 at 3:23 am #

    All good advice for traveling with a chronic medical condition. I’ve learned most of them by trial and error.

  5. Suzanne Fluhr (Boomeresque) 06/05/2014 at 3:27 am #

    All good advice for traveling with a chronic illness. I learned them through trial and error and some conditions are not very forgiving of error.

    • frugalfirstclasstravel 06/05/2014 at 6:20 am #

      No, you’re exactly right Suzanne. That’s exactly why travellers in this situation need a plan.

  6. irenelevine (@irenelevine) 06/05/2014 at 3:44 am #

    Such useful information. Thanks for sharing!

  7. mariamichelle117 06/05/2014 at 7:59 am #

    I never thought of getting a letter from my doctor regarding the medication I take. Thank you for the advice as I really don’t want to get stuck in customs exhausted, in a bad mood, and arguing with border patrol = not good.

    • frugalfirstclasstravel 06/05/2014 at 8:02 pm #

      The other advantage of taking a letter from your doctor is that if you get sick and need to see a doctor it makes communication easier, particularly if you are very unwell or are in a non-English speaking country.

  8. Cathy Sweeney 07/05/2014 at 4:27 am #

    Thanks for the informative and comprehensive tips about traveling with medications. There is a lot to think about with every country having different laws, etc. so these easy-to-understand tips will be very helpful for many.

  9. Vanessa 07/05/2014 at 1:06 pm #

    My spouse & travelling partner has psoriatic arthritis and we are slowly learning how to adjust our travels, especially as we are “pack the schedule” kind of folks. I’m now alternating slow and ‘fast’ travel days and learning that I need to make more of an advance effort to plan for food, especially breakfast (you know, it really IS the most important meal of the day!) I find now that paying a little extra to stay somewhere that includes breakfast – even if it is just basic – is well worth it. If Mr TurnipseedTravel is having a rough morning, I can easily go down and eat my fill, bring him back some coffee, juice, and muffin, and help him start his day. Wondering around for an hour or so to find the perfect quaint little diner is no longer a great start to our day.

    One thing I’ve been meaning to do is to give a notarized letter to our doctor and pharmacist that briefly explains our traveling life and authorizes a trusted, sensible friend to act as a decision maker in our place should we be away or unable to communicate. It would probably be much easier to place a single phone call to the friend, tell them all they need to do to help you, and let them take care of things than it would be to call a doctor, be put on hold, have the office be closed, or deal with some new-to-the-job staffer.

    • frugalfirstclasstravel 08/05/2014 at 6:20 am #

      Thanks Vanessa. Yes depending on the specific laws in your own country regarding privacy, authorising someone to act on your behalf if you are in trouble can be a good idea.

  10. fotoeins 09/05/2014 at 10:14 am #

    Great tips, Jo! It’s another layer of (necessary) homework and preparation during all phases of a trip. It’s easy to forget that different nations have different rules and regulations regarding what is and is not allowed for individuals; I would’ve missed this part. Thank you for sharing!

    • frugalfirstclasstravel 09/05/2014 at 8:09 pm #

      Thanks Henry. Most medications are fine, but opioid and anxiety medications need further investigation. If you do have a chronic illness you want to get the same value out of your travels – so doing the prep work is key.

  11. Bronwyn Joy @ Journeys Of The Fabulist 26/05/2014 at 11:02 pm #

    Good information. I once had to travel with needles and syringes. I took an up-to-date letter from the doctor and a cooler bag.

    I rung the airline prior to my doctor’s consult for advice on what sort of information to include in the letter and drafted the it for the doctor. He read it and decided he was happy to print it on letterhead paper and sign.

    I had no problems, very smooth. Just had to allow a little extra time for security and customs.

    • Bronwyn Joy @ Journeys Of The Fabulist 26/05/2014 at 11:04 pm #

      Actually, I should add I’ve travelled with veterinary medications on other trips, and have definitely opted NOT to bring things like narcotics, ketamine, etc. Apparently a colleague did bring some such supplies for an animal shelter and it was not at all pretty.

    • frugalfirstclasstravel 27/05/2014 at 6:04 am #

      That’s a good point – if you are carrying anything that could prove complicated be sure to allow extra time for security etc

  12. KookyTraveller 10/02/2015 at 9:07 am #

    Great post and although I wasn’t aware of your chronic illness, I’m really glad to hear your health has improved and I hope it stays that way.

    It’s always important to be mindful of switching time zones when taking medication, to ensure you don’t accidentally overdose, or miss a dose. Mobile apps can help with setting reminders as well as keeping a record of medication that has been taken.

    If an illness is invisible, ensure someone knows, if you anticipate there could be a problem. If there are things a hotel or hostel can do to make you more comfortable, it’s good to let them know with as much notice as possible too. In some cases ID bracelets can be helpful in an emergency, just as they can be at home. If gentle exercise is recommended, it’s important to maintain that whilst you travel.

    I know a lot of people with chronic illnesses who limit their travel because they don’t think it is practical; in many cases it is possible (as you know yourself!) with careful planning. Even if a person feels unwell, a change of scenery can be great medicine 🙂

  13. Robyn 12/02/2015 at 8:42 pm #

    Very helpful! I have AF and am now on blood thinners that have to be taken at 12 hour intervals and a couple of other meds that have to be taken at specific times. When I travel from NZ to America there are lots of time changes and I’ve been wondering how to manage them. My Dr says to set an alarm bt if I have to wake up in the middle of the night to take medication I wont go back to sleep Any suggestions?

    • frugalfirstclasstravel 15/02/2015 at 6:21 pm #

      Hi Robyn, I’m not really in a position to give you specific advice, and suggest you talk to your doctor about other options. What may be worth asking about is whether you can progressively change your medication times to fit in with your travel, or whether there are alternate medications that may be easier to comply with. With some medications though, you do just have to work around them, and would definitely be taking your doctor’s advice where blood thinners are involved.

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