I am at the end of two weeks annual leave in which I switched my mind off from my patients (with whom I have not had much patience of late) and gave my brain and empathy a little R and R.
Although we have enjoyed a staycation, my down time prompted me to ponder the quirkiness of international travel when you are living with CF.
1. There is no holiday from CF. No matter where you are on the globe lungs need to be cleared, antibiotics need to be inhaled, pills need to be popped, sinuses need to be flushed or oxygen needs to be condensed and piped through nasal prongs. You will take time out from hot Hawaii or awesome Alaska to do these mundane and everyday tasks. The two photos show me nebulising something-or-other in New Zealand as a tiny tot and then again in Rome. In the NZ photo my finger is lingering hopefully on the OFF button. The Rome photo serves as case study as to why I now have short hair. Also, I appear to like wearing pink.
2. You will need to be a pack-horse. All of those meds and equipment take up a fair bit of room! The Paraphernalia is allocated to one entire and ginormous bag. The Paraphernalia is checked in as hand luggage leaving hardly any room for in-flight entertainment. You don’t take your eyes off The Paraphernalia for a moment – in fact you would rather lose your passport than The Paraphernalia. It’s very important to try to travel with a strong man who likes you a lot so they can carry The Paraphernalia for you. In the event that you don’t have a strong man who likes you a lot… bribing might be necessary. The fantastic upside to The Paraphernalia is that as it is used throughout the trip you end up with lots of space for shopping! Woohoo!
3. Janette’s first law is thus. Although The Paraphernalia includes enough medication to treat the whole population of a small country the immigration staff are not at all phased. No eyebrows are raised, no sniffer dogs in cute little jackets sit beside you, no frisking occurs, no interrogation or cavity searches ensue. This is because they are busy ferreting through The Paraphernalia for your forgotten and forbidden water bottle rolling around with two inches of water left at the bottom.
4. Janette’s second law is thus. Remember to embark upon the six month-long process of obtaining documentation about all of The Paraphernalia. Be prepared to supplicate your doctor in person, via phone call, email, text, hospital page, carrier pigeon and smoke signals at least seven times each. Also, be prepared to draft your own letter and forge their signature in desperation when they still forget to assist. Should you neglect to take these steps the immigration staff will take an unhealthy interest in The Paraphernalia, and possibly your orifices.
5. Janette’s third law is thus. You will spend countless hours researching travel insurance for a pre-existing medical condition. You will apply to no less than thirty companies at the same time so you can honestly say you have not been rejected by another company. You will re-live the doctor supplication and drafting/forging of documentation experience. You will then undoubtedly be rejected by all thirty companies or asked to pay a tidy sum in excess of what your entire holiday costs.
6. You may need to choose holiday destinations or activities based upon what you can physically achieve with your lung function and energy levels rather than what you actually want to do. Hiking to Machu Piccho may be an activity best left on ice until after lung transplant. Or after Kalydeco Plus. Or after reincarnation.
7. Before or after your holiday you will most likely book another holiday – at the Hilton (ie: be admitted to hospital).
8. You will be that person having oxygen on the plane – when it’s not crashing.
9. At every destination your first and most pressing task is to find a fridge for The Refrigerated Paraphernalia. Once you find a fridge your second, but oft forgotten task, is to check it works. To assume it works is to destroy two months of crucial and expensive medication in one night’s sleep.
10. Your third important task is to find food. Not just for right now but for afternoon tea number one, afternoon tea number two, pre-dinner snacks, dinner, dessert, supper and breakfast number one as well as potential diabetic hypo mitigation.
11. You take with you a list of international CF care centers – just in case you need to pay them an impromptu visit and give them an audit of their standard of health care.
I want to leave you with a fantastic quote from one of my dear friends who also lives with CF. She eloquently describes why we put up with the CF quirkiness outlined above and more besides. I can’t phrase it any better than she has.
Traveling with CF is incredibly difficult both practically with the sheer amount of medication you require and the time to complete treatments, as well as emotionally knowing you can never escape CF even when you are on holidays. But, it is so worth it! You learn about your personal limits and how far you can push yourself to get the most out of life but also know when to stop and take a breath so you can literally keep living. It opens your eyes to the big wide world out there and reminds you about how fantastic life is and the reasons we fight so hard every day. When you look back at the amazing sights you have seen, the delicious foods you have indulged in and the timeless stories you can share again and again you will NEVER think about the medications you carted the entire way with you, not once.
NB: Since everyone who lives with CF is not at the exact same stage of the condition the above quirks are not necessarily experienced universally. I write generally.