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 6^th 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...

Emotionally 

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

First one over! I thought I'd post another one!

Writing the first post was so difficult! I had no clue how to start it off, what to write and what is there to talk about! I thought of just doing a blog about my daily life and what I have been up to... So I'll tell you guys what I been up to lately :-) 

The past week or so - 

I got admitted to King's 2 weeks ago (Planned) for a Port operation and for some IV's beforehand so I can be in the best shape for my op (For those who do not know what a port is, it's a metal piece that is planted beneath your skin so that I can have the vital IV's treatment I need, because our veins may be scarred from being used as a 'pin cushion"!) Anyway yeah, this is my 4th port! If I think about it, it's the 3rd port in roughly 4/5 years which I don't think is good as they should last up to 10 years each! The reason I keep having new port is because the last two port got infected while I was in hospital, which they claim it's because of my "poorly treated" CFRD... Which I guess we'll never know! It's so frustrating because my body is not a big fan of General Anasethic (Most people love it!) It seem to relax my body too much that I have difficulty in breathing for a few days after and in a great deal of pain and also seems to make my lung function drop and I find it harder to put it back to where it was beforehand. I had that done last Monday (15th of Oct) so I'm in a bit of pain and discomfort but I'll have to get used to it after going about 7 months without it!           

 Say hello to baby Paddy the port (Sticks out too much for my liking!) 

                                                                                     

Transitioning to Adults care - 

 I got a feeling that at the end of this admission will be the start of transition to Adult's care because I have briefly spoken to the Adult CF nurse and my CF nurse now has said about showing me the Adults ward next week... I have got mix feelings about going into Adults care because I'll be leaving the people I've known since I was tiny, and putting my health in a hand of strangers I don't know but will get to know! I do worry about, well I don't worry but wonder what it'll be like taking care of everything like phone calls and sorting appointment out and dealing with it because it's normally down to my parent's that do things like that! So that seems nerve wracking... Also I think I'm a bit immature right now to even go into Adults lol! But it'll fine :-) 

My idea to get better and improve my health - 

During this admission, I have come up with a plan and like a "Smart Goal" which I'd like to achieve... Once I get out of hospital, I'm hoping to get my Exercise Referral appointment at my local gym and get a free 3 months membership! If I do successfully get this - I want to do a progress and see if I can try and boost my lung function back in the 50's because it's currently sitting in the 30's right now and I'm not impressed with that... I'd rather be where I was about 3 years ago, 'safe and stable". It will be hard to get the motivation to do this because I do tend to suffer during exercise, like getting pounding headaches, breathless and just not feeling good... Whereas a few years back, I'd feel so much better afterward! But I find it difficult to get on the bike for 5 minutes right now! So this is going to be hard but hopefully worth it in the end with the supports! 

Something I thought I'd share with you guys 

I've also started learning how to drive, which is wicked! I'm looking forward to passing my test... I could of done them when I turned 16 but the provisional forms were a nightmare, sending forms back saying I've missed this paper and asking so many stupid question that isn't important but anyway I got it now so it's all sorted!! I've already got a car, well I'm insured on a car :P same thing right? I'm going to be a rubbish driver! It's so BIG... I'm small... My driver instructor's car is so small and I keep going to close to the parked cars on the side so god know how I'll cope when I start driving in my own car, arghhhhhh!!

Anyway, I'll probably be posting a blog every other week and will try and make it interesting! :D 

Cheerio and have a good day! 

Soph xx

First post!

Well well well, I've always looked at other people's blog and thought to myself "Why don't I do a blog about myself" but thought no one would ever really want to read about it... But I just thought why not go ahead and give it a try :) so here it is... First blog is a bit of a nerve wracking as you don't know when to start, what to say and many things! So firstly, I'm going to explain a bit about of my self :) All about me - I'm called Sophie, and I am 16 years of age. I have Cystic Fibrosis and I also have bilateral hearing, hence why my title says Spazious Sophie because I may be a spaz but I'm still fabulous! ;) I currently go to sixth form which I'm retaking my Math's and English due to being unwell for a long period of time in Year 10/11 which prevented me from being able to come into school and study hard and also I'm catching up on some of the coursework that I should have completed in Year 11. Anyway enough of that boring stuff! I wanted to create a blog because I'm currently in hospital, and thought to my self that I'm bored and would like something to do to share my experience! A blog it is... I've thought about posting about improving my health, just generally talking stuff I want to share with you guys and give you an insight of my life dealing with Cystic Fibrosis and how I cope with my rubbish hearing at the same time as it seems everyone don't understand I do not have it easy! 

For now I thought I'd tell you a bit about me and CF...

I was diagnosed with CF at the age of 2, on my Mum's 18th birthday! Not exactly the best present I gave her lol... I was generally well during my childhood though I did spend a long period of times in hospital but during primary school I was pretty healthy. I was always going swimming, to be honest I practically lived in the swimming pool I swear! I used to love playing football, frisbee and bike rides but that kind of stopped when I started secondary school. I don't really like the "Mild CF, Moderate, or Severe CF" because some people cope with CF differently and CF does varie! I think I'm generally doing quite well with my CF considering my lung function is quite low (around high 30/40's) because I feel I can do quite a lot of stuff even though I am suffering inside but I do try and push myself. 
Throughout the years, I do tend to have regular IV's, which I mostly do at home. I could go 2 months, 3 months and 4 months but it varies and depends on how I am feeling. I avoid Gentamicin IV'S I do not want to become any more deafer thank you lol.  I do try and do some exercise but I have been lacking in exercise lately because I haven't felt that particually well and just find it hard during exercise... I don't get the "positive vibes" I used to get when I used to go the the gym a lot. I guess my body think exercise is a bad thing! It's hard but I will start exercising more soon! I do take quite a lot of treatment to keep my CF maintained and stuff... This consist of doing Physiothapry twice a day (I use a PEP mask), which I cough up phluem (bleugh!) and clear my airways... I do nebulizers (Tobi and Promixin - Alternative monthly - and Dnase), I also take quite take oral antiobotics and vitamins everyday, sometime up to about 50 tablets including my Creons (Theses are to help to digest your food because the mucus tend to block the enzymes) if I remember to take them!! I don't really have problems with my weights. I did when I was a child but then I started to have Creons and that did the wonder! So I am quite lucky my weight is stabled and perfectly normal... Enough of this shit now... I'll explain later

I will be blogging posts about my transition from paediatric CF team to Adults CF team. I have also set a goal to try to improve my health because in the past year or so it has deteriorated so I want to start exercising and prove to people you can try to improve your health with a such a low lung function (Let's hope I do get my arse in gear and boost back in to the 50's!) I'd like to try to show progress and things :) Also gives an insight for my friends who seem to be clueless about my CF! :) I'll be talking about a lot of shit in general really but it's your choice weather you want to read or not.

Thanks for reading

Soph xx