Travelling with Cystic Fibrosis

I hate it. I hate talking about my medical condition. On the one hand I do not enjoy satisfying people´s curiosity and on the other hand, which is the bigger part, I do not wish to give this sickness any room. I refuse to let it determine my every day live, I refuse to let it become a part of me, to define me. So I don´t care about the details. I take care of the most necessary but that´s about it. A quite distinct form of suppression which I, luckily, am able to perform. Cystic Fibrosis comes in various intensities and, as a quantum of luck in this misfortune, I am doing very good.

And still it is there. Cystic Fibrosis. “Mukoviszidose” as we say in Germany. CF. Always there, always omnipresent. Every morning and every evening I have to inhale and take my medication. Vitamin D, iron supplements, Pulmozyme, Bronchitol, Kreon, Symbicort, Salbutamol, Spiriva, antibiotics from time to time and, last but not least, physiotherapy on a regular basis. That´s an awful lot of Latin inspired words and I hope I did not forget anything. But as you can see, CF is a challenge in everyday live and, particularly, while travelling.

Anyway, on the 28th of February I am standing at the airport with a 70-liter backpack on my back. 35 of these 70 liters are occupied by my medication as my destination is Peru for the next 2 months. In Peru even the basic medical care is in part alarmingly bad. From a young German doctor I hear that the municipal hospital of Trujillo, the third biggest city in Peru, basically has no supplies whatsoever. Everything that is needed for the treatment of the patient has to be bought in one of the hospital’s pharmacies. For this reason, I have taken precautions as the option to get my medications locally is herewith out of question.

But first of all I have to make sure that all goes well with airport security and the Peruvian customs section. Of course I am prepared. With me I have copies of all my recipes, all package inserts, some of them even in English and a statement of my doctor in Spanish and English. Ready to hold my folder of documents under some security or customs officer´s nose, I smoothly slip through security, into the plane and through the Peruvian customs. What´s happening? Nothing´s happening.  No questioning in a dim back room about why I am carrying pills holding white powdery stuff with me. No searching of my person or my luggage. What a pity. I was kind of looking forward to some physical human contact. Well. Maybe next time. I am prepared.

 

Indeed, I actually spent most of the time dealing with my beloveth fellow human beings and all their various reactions to my coughing. I have seen everything, from anger to concern to amusement. For example, the astute, Sherlock Holmes worthy diagnosis: “Your cough does not sound very good.” Makes me want to award the Nobel prize for medicine right away. Or the amazingly funny and original saying: “Why don´t you smoke another one?” which is always, always stated with a wink. Makes me want to remove that winking eye with surgical accuracy. And as different as people’s reactions are, so are mine. I’ve tried everything. Ignorance, biting sarcasm, blunt offence and yelling. I haven´t yet decided for my favorite technique. However, the first place for “comments, unnecessary af” goes to the flight attend that was worried for the possibility of Ebola. Because Ebola is from Africa.

But let´s be honest. While travelling, the number of strange looks, comments and questions doubles. Especially when living together with strangers in hostels or other accommodations. Because – apart from all my medical routines and all the coughing, where my face turns red, my jugular veins bulge and I sound as if I would turn myself inside out – also my digestion again and again causes joyous incidents. More (or less, if preferred) detailed info can be found in heaps online. For example, online at http://www.apotheken-umschau.de/mukoviszidose#Symptome. Unfortunately, it is in German but I remember my grandmother reading it regularly in the paper version. Apart from the fact, that the wording „fatty stool“ clearly marks me as high potential dating material, I just love the dramatic introduction of the article. “Cystic Fibrosis is the most common fatal innate metabolic disorder amongst light skinned people in Europe.” Something similar they said to my mother back then in the hospital. “Negroes don´t have that” and something like “a maximum of 8 years”. I´M 35 NOW SUCKER!

In Peru though, I cannot impress anyone with “fatty stool”. Thanks to culinary adaptive difficulties all travelers every now and then shit their guts out and I get away relatively unnoticed.

But the biggest fight is not with my intestines, not with idiotic fellow human beings or the Peruvian customs. The biggest fight, I fight with myself while trying to get my medical routines under control. The less I have a daily routine, the less I have the discipline to maintain aforesaid. In Peru the lack of discipline turned out very helpful as, despite all the organizing and planning, I managed to miscalculate on my medical supplies and ran short on 2 of my sprays. Nevertheless, I have to find a way to organize myself better. Betraying myself in turn, is a skill I already have mastered. It is 4 pm and I still haven´t started my morning routine. I can very clearly hear my mother’s voice in my head: “Pleasedoyourinhalationnowanddon´tforgetyourspraysdidyoualreadytakeoutyourpills?”. If anyone knows how to switch off that voice, please let me know. Self-help groups are also very welcome.

It is very helpful though to know you´re not alone. Sarah Mitchel for instance writes an amazing and interesting article about the challenges a neurogenic blatter presents while travelling: http://guttertoglobe.com/disabled-travel/                                                                                                          “[…] the nerves controlling the opening of my bladder don’t work. As a result, I can’t urinate without using a catheter, a procedure I perform an average of 4 times a day”– also in planes and also in small little villages somewhere in Kenya.

This is my experience so far and I am looking for other bloggers that, like me, have to handle chronic medical conditions and all the things that come with it while traveling. Medications and prescriptions, medication and customs, emergency situations, food restrictions, accessibility in general, etc. Everything that you can think of. I would like to create a place where people can share experiences, problems, seek advice, share guidance and tips. I am not sure if such a thing exists already, haven’t researched on it yet. So, question: are you traveling with health issues / medical restrictions or do you know someone? Do you have any ideas how to set this up or would like to cooperate on this idea? Have you already written about your experiences? Generally want to share your thoughts? Comment or send me an email to nora.hase81@hotmail.de. Your thoughts are very welcome.

9 Kommentare Gib deinen ab

  1. Emma sagt:

    I’m bed-ridden with ME & Fibromyalgia so I can’t offer suggestions on travelling (my few forays into the „wilds“ of the town have been challenging enough!) but I have a suggestion for self-managing your medications. Bear in mind that I need my carers to prompt me because I frequently forget despite having tested a number of systems in an effort to remember; you might do better.

    The most effective system I’ve tried for self-managing was to use alarms on my phone to remind me when I was meant to take x, y or z. (Of course, that only helps if you have your phone with you and the battery doesn’t run out, or that you don’t cancel said alarm and promptly forget to do what it’s reminding you.)

    You could also use a note app to keep a list of the meds you have to take (maybe several notes for the different times of the day if you don’t take the same meds at every instance), so that when your „breakfast meds“ alarm goes off, you open the „breakfast meds“ note and go down the list to the finish?

    I hope you enjoy your time in Peru, at any rate, and that things aren’t too difficult for you. 🙂

    Gefällt mir

    1. Hi Emma. Thanks a lot for your suggestion and sorry for my late reply. I really like the idea of alarms. I am definitely one of those people that carry their phone around all the time. Also the list might be an idea. I could use this idea also to make sure that I have everything with me, when I leave the house. I can’t even count how often I forget that too. Have you ever felt so angry with your illness, that you kind of forgit your medication on purpose? Honestly I do not know if this is a stupid question to ask bit tjat is a struggle I definitely hsve to overcome Peru by the way was fantastic and an amazing and big adventure!!!

      Gefällt 1 Person

      1. Emma sagt:

        I can’t say that I’ve consciously forgotten my meds deliberately, but it’s possible I don’t try hard enough to remember sometimes. It’s so difficult to remember as it is, I think I have days where I just think „I’m going to forget anyway, might as well just not try“. And that extends beyond medications, to be honest; anything that requires an effort to remember.

        I’m glad you enjoyed Peru! I always wanted to travel the world. The most I ever managed was a fortnight in Spain and a virtual world tour courtesy of postcards and souvenirs from friends I’d made online. That was amazing enough, but I’m so glad you got to travel for real!

        Gefällt 1 Person

  2. Sonia sagt:

    Hi gorgeous,

    first let me tell you, OMG Congrats! its not that easy to make the decision to go to another country with difficulthealth conditions, but we only live once so make it count!!

    I don’t have a condition myself but my mom has recently been diagnose with an inmune risk, so no we are getting all the precaution list to travel ready, she went out of the country for 3 weeks with my father everything ok but returned and was almost a month in bed. So now its all about the preparing better for next time

    Hope to hear from you and your trip

    Loves from Sun & http://likesocharming.com

    Gefällt mir

    1. Hey Sun, thanks for the love. I hope your mother does well! Checking out your website now. 😉

      Gefällt mir

  3. authenticfoodquest sagt:

    Thanks for sharing your story. And good for you for making the trip to Peru. Did you enjoy it? One can never be prepared enough and it sounds like everything turned out okay for you. Cheers!

    Gefällt 1 Person

    1. I definitely enjoyed it and I will go on travelling even more in the future. Every „mistake“ I make will improve my preparations for the future, right? 😉

      Gefällt mir

  4. Thank you for sharing your story. It is super empowering to read about you not letting your condition limit your life experiences!

    Gefällt 1 Person

Kommentar verfassen

Trage deine Daten unten ein oder klicke ein Icon um dich einzuloggen:

WordPress.com-Logo

Du kommentierst mit Deinem WordPress.com-Konto. Abmelden / Ändern )

Twitter-Bild

Du kommentierst mit Deinem Twitter-Konto. Abmelden / Ändern )

Facebook-Foto

Du kommentierst mit Deinem Facebook-Konto. Abmelden / Ändern )

Google+ Foto

Du kommentierst mit Deinem Google+-Konto. Abmelden / Ändern )

Verbinde mit %s