Monday, April 18, 2011

Traveling with a Chronic Illness

As most of you know by now, I sport a congenital heart defect (layman terms: my heart is f*ed up). Traveling with such a delicate (read: moody) ticker is not unlike a circus act sometimes. One minute I am the ringmaster, totally in command of myself and every bit of chaos around me and everything is grand, ready for me to conquer. The next minute I am doing a death-defying balancing act with nary a net under me. And I am always juggling.

When I was a teenager, I traveled alone to and from the coasts to visit my best friend. Knowing her parents were just as vigilant caregivers as herself, my mom felt comfortable getting there to and fro by my lonesome. Then, in 2003, when I was 21, I decided to dive head first into an Australian adventure. I wanted a one-way ticket, a beat up writing journal and five pairs of shoes ~ I was going to write the Great By-An-American-But-Pretending-To-Be-Exiled-In-The-Raw-Untamed-Beauty-Of-Australia novel and THERE WAS NO STOPPING ME! Except that I was back in two weeks, sick from cigarette smoke inhalation to the point that I had to be escorted in a wheelchair to my mom from the plane. Thank you, good people at Quantas.

Sydney was a learning lesson; an expensive learning lesson but one that put a six and half year gap between myself and the next time I flew international, which as many of you know I just did, having returned from Ireland exactly one week ago. I was smarter this time, and though this trip did not come without some challenges because I don't control every human being on this planet (yet), here is my advice when traveling with my particular chronic illness:

1. Aisle Seat - Having been on blood thinners since I was 20, I always make sure I grab the aisle seat so I can get up and walk around the cabin without disrupting too many people. It's always best to give the airline staff a heads up, too, in case they keep looking at you funny.

2. Count Meds - I count my medicine with a calendar and make sure I am going to have enough for the duration I am gone, plus a few days more in case any unforseen happenstance occurs (like a freakin' volcano).

3. Calendar Check - During a certain time of the month, my heart is more apt to be behaving wonky due to a hormone change. I try to either avoid traveling on these dates or at least plan low-key activities. This trip I came home during this time and the last 24 hours I spent in Ireland had a bit of a figurative raincloud over it because I had to be extra vigilant about my activity. No caffeine, no alcohol, and my emergency pill close at hand.

4. Travel Buddy - If I am traveling to a destination where I have no one to be visiting, I make sure to have a travel buddy. With both Sydney and Ireland, I threatened to go solo but breathed a deep sigh of relief when I was finally able to secure a trusted friend to come with me. Those are the two key words, by the way: Trusted. Friend. While I love all of my friends dearly, there is only a handful of them I would trust not flip the fuck out should something dire happen to me. Not just that, but understand that I can't always stay out late or drink as heavily as others or go without breakfast. These are what you call true friends and they make the best of any situation and will hang out watching the Graham Norton Show rather than try to bully you to go to the pub.

5. Official Paperwork - I made TEAM RACHAEL! (my medical team) send me as much updated paperwork as possible, plus a single page overview of my heart condition, listing my surgeries, Team Rachael contact information, medicines, and official diagnosis in case a) any security official wanted to throw down with me for packin' a pharmacy in my purse or gave me a stink eye about needing a pat down due to my pacemaker, or b) I had to make an unscheduled trip to any medical facility. The official one page document is printed out and carried at all times,while the others are put on a travel USB specifically for medical information. I urge everyone with a chronic illness to invest in a travel USB and to keep it updated with medical paperwork to take with them whenever they travel, even if they are visiting relatives or good friends.

6. Lay of the Land - I had to cancel our initial Cork accommodations because I was unaware how steep & hilly Cork city is. When a Cork local writes a travel book and warns the readers how steep a particular street is, though, it's time to look elsewhere. Thankfully, I found a self-serviced apartment with a special rate in the heart of it all and not on too steep of an incline that I couldn't trudge home every evening.

7. Not a Backpacker - I admire backpackers, but backpacker I am not. Camping Steffie and I may have done, but backpackers, again, we are not. It is important to tell myself that I am not a backpacker, in no way am I to feel guilty for being unable to wing & rough it the whole vacation through. It is also important to really emphasize this to anyone I may be meeting up with or relying on for accommodation so they understand I am not walking against the wind here.

8. Weather - I'm anemic, and even though Ireland is at its warmest this time of the year, the nights are still chilly for me, especially when we camped. Always being prepared for any type of weather is essential as is growing a thick skin against the snickers for dragging a large, comfy coat (that kept me warm during those pivotal three nights of CHILL.)

9. Self-Limiting - I've always been good about self-limiting, starting from childhood, but it does become a challenge when I'm out & about and having fun, wanting to do EVERYTHING! Every single moment there is something awesome to be doing, but that doesn't necessarily mean I have the energy for it. It's always vital to listen to my body, but even doubly so when I am on vacation and away from home. Pushing myself beyond my limits one night may mean missing out on planned, pre-paid for awesome stuff the next day so it's better to just turn in early, make some pan-grilled Tandoori chicken and veg in the serviced apartment and call it a night early on.

10. Eating Well - While I knew I would be dining at some of the finest establishments in all of Ireland, what of the in-between meals, especially while we're on the go? Grab a piece of fruit, NOT THE PASTRY, and a big bottle of water that can be recycled over & over (as the tap water their isn't poison like it is here). Steffie always made sure that my stubborn picky eating habits did not interfere with the need for nutrition. She would have shoved that egg sandwich down my throat had I not finally obliged, and the last words I'd have heard would have been, "PROTEIN!"

11. Packing Light - I'm still learning this one, but I've come a LONG way from five pairs of shoes and a suitcase heavier than I am. It was my bright idea this go-around to try and only have carry-on luggage. One HEAVE-HO of my bag after packing it though was enough for Steffie and I to check those suckers in. Oh, they were killer but we managed (with a lot of stopping) and I often forget just how many staircases the old world is plagued with. PLAGUED, I tell you. OK, from here on out: Travel light, with rolly-bag! And don't forget to squirrel away the money to ship stuff home when you go overboard on clothes shopping.

12. Avoidance - I have had enough cigarette asshattery incidents in my life to make me feel justified in thinking very extremist thoughts about smoking and smokers. Smoking is a touchy subject for everyone involved so I'll just say this: I take extreme precautions to never wind up in a small, enclosed proximity to smokers. Sometimes it doesn't work out and those tricky bastards still manage to fuck up my day (as they did on this vacation, too). As a guest in a country not my own, I make it my responsibility to maneuver out of the path of cigarette smoke as much as I can. I rarely complain to smokers directly, unless they are encroaching on my personal, designated, I-paid-for-it and you're violating laws space. I make sure to ALWAYS have such a space.

13. Clear the Calendar - Upon returning home, I made sure that I did not have a lot of obligations that was going to drive my energy level into the ground. I know vacation time is usually meant for R&R, but it is a different kind and I can say with zero exaggeration that I never worked out as much in my whole adult life as I did on this recent trip. I was up and walking up and down, all over, lugging baggage, going this way and that way. That exertion combined with airplane illness means a lot of recuperation when I come home. Make sure to square away time for it!

So these are my rules for Traveling with a Chronic Illness. I'm sure they will be added to and revamped as my travels grow. Do you have rules for traveling with a health condition you need to be mindful of?


  1. Hi Rachael - I love this - I have only been on one big holiday (to the snow in Australia) since I got really sick with my VSD and it was the cold that really did it for me. Walking around (especially in the mountains) required alot of rest and I got so cold I couldn't move my hands even with gloves on. It was really nice to laze around watching the snow fall and drink hot chocolate but all the snow sports were too much! I am trying to get travel insurance for overseas holidays (I am in Australia)... will post on the FB page if I get any luck (I'm on there as Megan Tones)

    1. I've no idea why I am only seeing your comment now Megan, sorry about that! Glad you enjoyed the post. I am so sorry to hear about all of your troubles in the cold! I'm on high doses of iron now but even this last trip to Ireland in May '12 had me really chilled some nights.