05 Jun, 2016

Traveling With A Chronic Illness: The Why

traveling-with-a-chronic-illness-disease-traveling-why-cystic-fibrosis
05 Jun, 2016

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Admittedly, I struggled a little bit, wondering if I should write about the topic of “Traveling with a chronic illness” or not. When I launched Travelous Mind beginning of this year, the main thing I wanted was a platform to share my travel experiences with others.

I wanted to write about a deeper form of traveling and best case scenario: maybe even inspire some people. I never really intended to make my lung disease Cystic Fibrosis a subject matter. In the past I’ve more or less tried to actually avoid the topic because I always feared that people might think that I wanted their sympathy or just wanted to get some attention. I just always wanted to live as normally as possible and I am definitely happy that I never joined the self-pity-party or got into the mindset of feeling sorry for myself.

 

I now know that my disease isn’t all bad and that it has made me into the person I am today. And that I can be proud of having learned to cope with it as well as I have over the years. And most of all: in spite of it all, always pursuing my dreams, no matter what.

What I’ve also realized in the few months of blogging is that I actually can inspire people with the things that I do. And that is such an indescribable feeling and has become so very important to me. People who write me emails or messages or tell me that they are also suffering from some type of illness and that they dream of being able to travel the world and follow their dreams- I cannot put into words what that feels like. Therefore I now think I can and definitely want to cover this topic. I don’t want to shy away from it, but rather embrace it and write about it openly and forthright.

About traveling with an illness.

 

Traveling with a chronic illness

In this blog post I’d like to get into the topic of traveling with a disease in general and explain to you why I travel, in spite of the obstacles I meet due to my illness, and why you too should do the same (no matter if you’re sick or healthy). In the next part of this post I will then give you practical tips on how to travel with an illness, concerning what to do about the medicines you have to take and all the other obstacles that may present themselves.

 

Good news first: Traveling with a disease is not easy, but without a doubt and most definitely possible!

 

A short info for those who don’t know what Cystic Fibrosis is: CF is an inherited, genetic disorder that affects mainly the lungs, but also most of the other organs as well. Due to a faulty gene the exchange between salt and water in the body doesn’t work properly. The result is that people with CF have problems breathing, they often have respiratory infections that can quickly lead to pneumonias and some other symptoms.

What that means for us? To give you a general idea: Many inhalants, breathing therapy, loads of medicine (antibiotics, enzymes, vitamins, liver medication..), IV-treatments every few months for 2 weeks each, a lower lung function (mine is about 50% compared to a „healthy“ person’s), therefore problems breathing, lots of coughing, a shorter life span (on average about 35 to 40 years) and external oxygen supply if necessary (luckily not in my case). Especially when it comes to traveling one of the biggest problems is that a totally normal run-of-the-mill cold (or worst case: more than one consecutive common cold) can turn real shitty really quickly.

All of this of course has an influence on the way I travel, but, above all, it pushes me to do it anyways, because as you can maybe imagine: I have thought a lot about the subject of „time“ and know very well, that it can all be over pretty darn quickly. That is why I believe we should use the time we have for those things that our heart desires.

 

The downsides..

Yes, there are, without a doubt, a few downsides and obstacles that need to be overcome if you have some type of disease and want to travel.

For me, there are always some things while traveling that I can’t do or times I can’t keep up with the people I’m traveling with, because I’m just out of breath quicker than most people. Surfing is a good example for that (although I will never stop trying 😉 ), also snorkeling (I’m not allowed to do it at all because of the bacteria that can be inside the snorkels and can be really dangerous for my lungs) or other extreme sports, which are a problem for me as well.

I’ve had problems breathing while on long flights, due to the lack of oxygen in higher altitudes, as well as in certain places that are really high up (Machu Picchu therefore might not be the ideal place for me to be hanging out at). I also try to avoid large cities (Mexico City was definitely not a picknick for me and my lungs) and trips that include me having to cross through many different altitudes or climate zones (which was the case when I was road-tripping through Mexico). There’s of course also the problem of having to take large amounts of medicine with you, having to do inhalants and breathing exercises in hostels for example, cleaning the inhalers and so on. But more on those kinds of details in the next post.

One of the things I find worst though, are those (rather rare) moments of fear, that have only occurred maybe twice during my previous travels, when my health rather suddenly changed for the worse after a cold or two and I started feeling ten kinds of shitty. I always carry some emergency medicine with me though in case something like that happens and I know what to do in most cases. Otherwise: We do have doctors everywhere in the world 😉

 

…and why you should do it anyway.

Sure, traveling under these circumstances is a challenge, for sure. But still, I wouldn’t give it up for anything in the world. When you travel you realize how well you’re actually off, with or without a disease, when you see how much shit some other people on this planet have to go through. Especially here in Germany (and most of Europe, the US and so on..) we are lucky to have medical care that is as good as it is- which we often take for granted. The great thing about traveling: You can go where ever it suits you, where your body and soul feel in synch and at their best. (For me and my lungs being at the ocean is absolutely the best because of the salty and fresh air.) While traveling you also learn to value and appreciate your life even more. You suddenly know what you’re doing it all for, all the medicine, the exercise and the general “working-your-ass-off”.

 

Don’t let the disease define you.

 

You do carry a huge portion of responsibility around with you though, having to take such intense care of yourself and your body. You have to be super-independent, be able to really take care of yourself and listen to what your body has to say. But at the same time there comes an immensely large portion of freedom along with it. Experiencing that, you are no longer a „sick“ person, but you actually become a „self-determined“ being. Don’t let the disease define you. You should be the only person defining yourself.

 

That is why you too should go out und just go for it.

 

A short note: It is clear to me that not everyone who has a chronic illness has the same illness and the same symptoms as I do. You possibly have more obstacles to face than I do. Still I want to encourage you and maybe give you the tools to be able to pave your own way or give you the courage to find a way to do it anyway, if somehow possible.

 

Do you have an illness that represents a hindrance for you? No matter if you have an illness or not: What is keeping you from following your dreams? Have you had any similar experiences or anything else you want to talk about concerning this subject-matter? Write it all in down in the comments section or write me an e-mail at denise@travelousmind.com!

 

 

17 Comments:

  • Svetoslav Dimitrov June 13, 2016

    Dear Denise,

    Thanks for this touching and very inspirational post! I have some kind of an inherited disease – achalasia. I will let you read more about it on Google.

    I wanted to say something else. The doctor that put this serious diagnosis told me some 20 years ago. “Forget that you are sick or ill. Eat everything and be happy.”

    Well, of course, I am not eating everything and I am more than ever caring about what I put in my eat and how slowly I chew it, but I wanted to say the less you think about it – the less you are going to experience it.

    Hugs for you and I cannot wait to show you around the fresh air of the Bulgarian mountains 🙂

    Reply

    • Denise June 13, 2016

      Thank you for your openness and for your wonderful comment, Svet. I just read up on Achalasia and it sounds intense- hats off to you for not letting it get you down and you still doing your thing 🙂 And that is the same thing my parents always taught me, to not let myself “feel” sick but to lead a normal life- the best thing you can do, I think. Can’t wait to come visit very soon!! 🙂

      Reply

      • Svetoslav Dimitrov June 13, 2016

        Thank you for starting this series – it must have been a fight inside, but you are giving a good example and starting a discussion that needs to be carried out. And everything can be cured in one way or another! 🙂

        So, when? :))

        Reply

  • Anna June 06, 2016

    Wir leben das Leben ein wenig intensiver, extremer und vielleicht auch sinnlicher als andere. Reisen ist der perfekte Weg dafür. Merci für deine Woorte. Eine Mukoline 🙂

    Reply

    • Denise June 06, 2016

      Sehr schön ausgedrückt. Das glaube ich auch, Anna. 😉 (“Mukoline” habe ich auch noch nicht gehört, sehr süß! 😀 )

      Reply

  • Ella June 05, 2016

    “Therefore I now think I can and definitely want to cover this topic. I don’t want to shy away from it, but rather embrace it and write about it openly and forthright.” Yes, go you!! I think it’s awesome that you’ve decided to speak about this, because I’m sure it really will inspire others who have the same dreams and are in the same position. It’s kind of similar to why I speak about my mental health issues on my blog. Sometimes I fear that I’m sharing too much, that it’s irrelevant to my blog and that others will find it annoying. But then I remember that someone else could potentially find it very helpful and that honestly, it’s a topic that really does need to be talked about more. Especially since there’s so much stigma and shame surrounding mental health. And like you, it does affect my travels and that’s not something that I can or want to deny on my blog. So I think that ultimately it’s the right decision to talk about these things. At least for us 🙂 . Yay to talking openly about very real things!! 🙂 haha.

    Reply

    • Denise June 06, 2016

      Ella, you cannot imagine the joy I felt when reading your comment. You are so absolutely right and when reading comments like yours I know that it was the right choice to start writing about this topic. I cannot imagine what it is like for you, but I feel like, at least concerning travel, it makes us go through similar things and I also admire you for writing about your illness! Keep going, you can be pretty darn proud of what you’re doing!! 🙂

      Reply

  • Katharina June 05, 2016

    Wunderbar schön, offen und ehrlich geschrieben…und egal, ob mit Krankheit oder ohne. Wir haben leider nur dieses eine Leben und sollten damit anfangen, was uns wirklich wichtig ist. Zeit rennt schnell und keiner von uns kann wissen, wie lange wir sie haben…Ganz lieben Gruß aus Lissabon

    Reply

    • Denise June 06, 2016

      Genau so ist es! Danke dir für den lieben Kommentar und viele Grüße nach Portugal, meiner zweiten Heimat 😉

      Reply

  • Hung Thai June 05, 2016

    Inspirational post Denise 🙂

    Some people go through life not knowing how precious it is – to live it to the fullest. You’ve transcended that. Time is really the most precious commodity in life and you’re out there making the most of every second of everyday. Kudos to you! We can all learn from you, not just to travel with an illness, but also to “use the time we have for those things that our heart desires.” How long we live on this earth doesn’t define who we are, it’s what we do with that time.

    Thanks for inspiring me Denise.

    Reply

    • Denise June 06, 2016

      Wow, Hung, your comment really gave me a huge smile- thank you for that and for your wonderfully thoughtful and words!! And you are so absolutely right about how the amount of our time on this planet isn’t related to how we actually live our lives. Thank you, Hung. 🙂

      Reply

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