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Tuesday, 21 October 2014

Inside the mind of someone with a life threatening genetic condition

What does it feel like to have a medical condition? 
A medical condition that you will never get rid of? 

These are questions I am hoping to answer in this blog post.

Having Cystic Fibrosis is hard to explain and you'll never fully understand it unless you have it and have to go through the on going treatments day in, day out.
Having CF is something that requires you to mature earlier than I probably would have, it's having to understand that it won't just go away one day and that the treatments need to be done if you want to keep well, Having CF is having to understand that these treatments are more important than seeing friends and even doing school work but these treatments must not take over your life and you have to try and balance a social life on top of everything.

Having CF is being able to realize that sometimes doctors and nurses don't know your body as well as you do and having an input into your treatment is key.

Having CF is knowing that even with all the antibiotics given, its not a cure and may not even cause the infection to clear. Having CF is knowing that and still fighting on with it.

Having CF is where you get so tired from all the intravenous antibiotics all you can manage sometimes is to watch telly on the sofa and chill.

Having CF is where no matter how bloated or not hungry you feel you know you have to eat at least 3,000 calories (for me anyway) to gain weight a day

Having CF is having a constant battle for motivation to do physiotherapy and to take medication when some days you just want to live a normal life.

Having CF is accepting the fact that you may not build lots of friendships at school because you are barely ever there. Having CF is getting upset at the fact that you don't always feel like part of your peers but feel isolated.

Having CF makes you have close bonds with other people with CF and form strong friendships with many people all around the world. But having CF means you have to accept the fact you can never meet these people.

Having CF makes you appreciate life for what it is and how easily it can be taken.

Having CF is hard, it makes me feel low and upset and like I'm different to everyone else, it makes me feel lonely and afraid of what the future may bring.
But it also makes me feel determined and strong and makes me want to fight and beat this illness once and for all!

Having CF is always having the constant nags of 'do your physio', 'take your tablets', 'eat some more', 'take your creon'

But having CF makes me who I am.

1 comment:

  1. Hi Cecily! I found your blog on twitter and I wanted to connect with you because I'm 24 years old, and I have a rare lung disease as well. I really relate to everything you wrote here, and I struggled a lot in college as well. I haven't really met other people with lung disease around my age, so it's nice to meet you. :) -Jasmine