Monday, 22 October 2012

What is it like being a teenager with Cystic Fibrosis?

I'd never thought anyone cared about me or even thought about me so much until I wrote this blog; the amount of support and lovely messages I have received is overwhelming. 

Following suggestions from my readers, I have decided my next post will be based on how I deal with my medical conditions as well being a teen.

Success in the Face of CF & Deafness

Being a teenager is already a big enough challenge to go through!
And I feel that I am missing out on many of the things that normal teenagers do.
But Cystic Fibrosis and Deafness adds a lot more challenges and pressures for me.
It is hard because in my opinion, I do miss out on important stages of ‘Teenhood’ due to my deafness, as I often don’t hear really important pieces of information connected with my GCSE coursework. This makes studying very difficult! 
Having days off from school doesn’t help one bit!
This particularly annoys me, as I hear people saying things like “You’re Lucky that you don’t come in to school as much as you should!” But do they really understand why I am not able to come in all the time? And that I am suffering on those days!
I would like to say that I don’t sit around and ‘Slob About’.
If it looks like I am, then this is because I may be feeling ill, and finding it a struggle to breathe, or, I may be in hospital or having appointments with doctors, or getting my IV’s done!
I would rather be at school doing BORING WORK’ because all this stuff really isn’t much fun.
Since leaving year eleven I have decided to continue and stay on for 6th form.
Unfortunately I did not gain my GCSE’s due to my lack of attendance, meaning that I missed out exams!
My teachers have been lovely, and said that I can continue my Society Health And Development Diploma, which I want to have completed by the end of year eleven.
I hope to have this all ‘Done & Dusted’ and sent off for marking by January 2013.
If I get more than five GCSE’s, then I probably will be able to study for my ‘A’ Levels, and continue to retake my Math’s & English. This of course depends on my health and wellbeing. 

Cystic Fibrosis and Deafness can affect me socially in different ways. It is difficult enough being deaf because I lack in good communication which is a very big part in the "Social world" I find it hard to make friends at first because I do not make the best "first impression" shall we say? I tend to become shy, worried and the more I worry, the harder I find it to concentrate on hearing! If I'm in a group of people, I will be able to be fully involved in the converstation and tend to shy away because I tend to come out with the wrong thing or just have a clue what's going on! 

Cystic Fibrosis doesn't help either. It takes up a lot of my free times that I'd love to spend with my friends going out and doing things. It also affects me seeing my school friends because I don't attend very much so therefore I do not see them as much as I'd love to. It is difficult going on a night out with friends because I have to do all my treatments beforehand and that takes up a lot of my times and often makes me tired so I tend to just change my mind and decide not to bother going out! Not good... 

Cystic Fibrosis tend to deteriorate during Adolescent stage as the Medical people say... Unfortunately this has happened to me, which is not what I am happy about. I'm going to be very honest here and admit it may be my fault in some way... I was childish enough to not care about my treatment and thought it won't hurt skipping it, slowly stopping exercising, and becoming more interesting in other things... 

I started to become ashamed of my CF as soon as I started secondary school. I wasn't very opened about it because I wanted to be "normal" and feared I'd get bully at school (Touchwood, I have thankfully never been bullied about it, maybe a few sniffy stupid comments about it but in it goes in my ear and out the other) until around year 9 when Cystic Fibrosis started to slowly crept up on me and doing what it does best, to start a battle... I can't exactly moan too much because around 13/14 I wasn't particularly the best at looking after my health, but then I think to myself, what does a "normal" 14 years old girl think about these days? How they look, boys, friends, and many other things... Whereas mine was health which will probably never pop up in a girls mind apart from their weight... 

I do wish I did take extra care in looking after myself and still do now, but it's the motivation and also it does take a lot of strength to do it... Who would want to sit there and cough their guts up for 20/30 minutes twice a day every single day?! I certainly can say I don't but I do because I don't want to be ill... I have plans for the future and do not want my health to jeopardise my dreams...


I have found it difficult emotionally in the past 3 years or so dealing with Cystic Fibrosis as well as my Deafness... It's hard thing dealing with emotions, because as teenagers already have to deal with the ups and down with their emotions, I feel I have the add extra emotions to deal with... I can feel lonely, sad and just not myself quite often which isn't nice... There have beens stages where I have wanted to give up everything and felt there was no light at the end of the tunnel, but then I think to myself that's not right, I need to start thinking positive... So I try... It's hard but I do have hopes and dream that I AM going to achieve. All I need to do is just look at my lovely little sisters and just think to myself that I want to see them grow older, have boyfriends, go girly shopping with me and do many sisterly thing's and also think about the dreams I have... 

I find it hard describing what it is like having Cystic Fibrosis because I get asked this question a lot... I don't know how a normal person with a lung function of 100%" breathes like, but it sure sounds dreamy! I'm so used to being breathless and tired, that I don't even realize it sometime and I don't think I have experienced being able to run freely for a good 10 minutes without having to stop, choke in my own mucus, and feeling breathless... It is hard because I'll have days where my chest feels fucked  and I have to actually try and control my breathing but it can be physically exhausting and takes up all your energy... I got a description that I like to try and explain to the Physiotherapist how I feel which apply to me "Imagine wearing a heavily soaked thick jumper and going for a swim or running" It seems a perfect saying for me as I often feel heavy and I can't breathe like I'm on the floor and people is "planking" on the top of me. I try and hide how I feel because I feel I'm making a big fuss out of it. It is physically exhausting having CF... It can make me tired easily, just going to school knackers me out and I could sleep for England but no I want to carry on the day, so I do. I do feel like I'm suffocating sometime, like drowning inside of my own mucus which isn't a pleasant experience as you would imagine.

But Cystic Fibrosis and Deafness has made me who I am today.

'm going to finish this post now because it's long and you guys may get bored! If I have  missed out on anything you wanted to hear or want to ask me something, click on my Facebook page link on the right hand side :) 

I'll write again soon guys :-) thanks for taking time to read

Love soph x x x