Merry Christmas everyone! ;-)

Well I want to start off by saying Merry Christmas everyone and hope you all have a wicked one :-)  

I'm starting to lack in motivation in writing a post on this Blog because I generally don't have much to say unless you just want to hear random craps, which you guys probably don't ha ha! But I'll try and make it interesting as possible :P 

I got to admit that this Christmas is probably going to be one of the best in years for many reasons. It is like one of the first time in a long time that I have not been ill over Christmas which is brilliant as last year Christmas wasn't too good, well it was, but the days before that was just horrendous. Basically what happened what, I was admitted to A&E quite late at night a week before Christmas because I was coughing up quite a lot of fresh blood which was scary as I was generally feeling fine beforehand and only just come home from going out with a Friend. Anyway, the next day I can't remember much to be honest, just sleeping a lot as I wasn't feeling to good. To shorten this story, I then was admitted to King's for a few days of IVs to try and get me better for Christmas day and also Skiing which we was unsure whether I could go or not. I was then finally discharged the day before Christmas Eve which was the best thing ever as I was worried I was going to miss my little sister A's first Christmas!

 This Christmas will be the best as it's the first time I'm not ill over Christmas day in a few years and also I'm looking forward to seeing my little sister A reaction to a lot of presents as she's now at the age where she can open presents (with a bit of help!) and kind of understand what's going on, whereas last year she was only 4 months, so just a tiny little girl! 

I haven't really been doing much as I have had a cold which kind of turned into a Chest infection so I was pretty much stuck indoors, doing nothing! BORING. I had CF clinic the other week which was okay I guess :-) They had a bit of a scare and thought I have grown burkholderia ceapia (Not the correct spelling!) but it has turned out I haven't which is brilliant! I didn't do lung function because they didn't want to do one in case it wasn't accurate and to not disappoint myself. My weights were fine, they have improved since I was in King's so that's all good :-) I got IVs in January which I kinda expected so that's fine! Also Paddy the Port had a drink (aka port flush) I was pretty nervous as since my first port became infected, I have grown a bit of fear of port needles! Chuck me cannula's and picc lines, I'm okay, but port needles scare me! I'm just weird! ;-) But oddly enough, it didn't hurt and I didn't have to pinch the area! Yes, I always pinch near the port, to near that the nurses get annoyed 'cause they can't access hahaha! 

I'm not sure if I have mentioned it in the previous post, but I have had to stop doing driving lessons! Waaah! :'( This is because DVLA have made a massively stupid mistake and put my driving licence invalid till next year which meant I have been driving around illegally, even thought when I first started, they said I was legal to drive to my driving instructor. So I gotta send off my driving licence and wait for them to make it valid so I can do my theory's! Boring.

Well that's pretty much it as I wasn't going to do a post till after Christmas so yeah :P

Oh, can I just say something? Because it's New Years Eve coming up, fresh start and new year. Why not sign up for Organ Donation? There are many people out there waiting for new organs to start a fresh new life and year! So please please do a generous thing and go on www.organdonation.nhs.uk/ and sign up! Be a hero!  

Don't be prepared to receive if you're not prepared 

to give! 

Soph x

Just an update

I haven't really managed to get a chance to update my blog as I promised I'd do fortnightly... I just don't really know what to mention as I assume people would get sick of hearing same stuff over and over, but I thought I'd just give a quick update on what I have been up to really... 

Well as some of you may remember (If you have read my previous posts) I was in King's for a while for a port a cath insertion and also for some boost to get me better a couple a weeks ago... Well I came home about a month ago now. Good thing was I managed to get my lung function up to 43% which is brilliant as I haven't hit that since Juneish (I like to keep track of every single lung function to see how it's going) and considering I had an operation that's even more bloody brilliant! I got given a NIP or NIV, I don't know which one it is but it seems alright... It's like a non inventilated nippy or something that I should be using for my Physio. I absoultley hate it! It forces air in your lungs, way bit too much for my liking, so afterward my breathing tend to feel strange!

I also been told I cannot do skydiving because it's too risky and can cause trauma to my lungs apprentley, but I know what I'm like, I don't ever listen to the CF Team about things like that... So I'm hoping to sky dive soon as it's an amazing experience and i love the adrenaline attack you get haha so why not + it sounds just so exciting thinking about jumping out the plane and free fall, (well I do want the parachute for the landing!)

I haven't really done much since I have been back. I did promised myself I'd exercise more when I get back, but I guess that went out the window... Oops... I always say to myself I will do it soon, but I always push it because I dread it! It's not the nicest experience for me. But now I've got a membership, I'm going to try start going to the gym and possibly swimming as that was my favourite exercise as a child! I've had a minging cold that I seem to not managed to shift as it's gone to my chest, it's weird as in the morning I wake up like ill and rough then in the afternoon I feel much better, so annoying! I'm possibly having IV's again this week or next week if I cannot shift this cough so hopefully that'll help 'cause i don't want to go in hospital at all near Christmas like last year, (I was let out the day before Christmas eve "phew") so yeah...

Anyway that's all for now to be fair, I'll update more often with more interesting things to say :P

Soph x

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