what a difference a year makes

NOV 2012 --- NOV 2013

was looking at my photos on my laptop and found this which made me really want to write. so i'm writing. this text was the turning point to me finding my sparkle again. papa knows best!!


a year ago this week, i was in a really rubbish place with my emotions and my head being so mashed up from so many things. i felt like somebody had grabbed my precious circle of what I perceived to be happy & perfect life and ripped it open letting all that happiness & perfection slip out and run away. i didn't have college or studies or work or friends to just fall back and engulf myself in. everything I had was this circle and that circle wasn't existent any longer.

i felt like i had lost everything.

i felt hurt, i felt betrayed, i felt scared, i felt lost and i felt alone.i have the biggest family that i have known and they all crammed around me & swarmed in to help wrap this little bubbling volcano up, yet it was the loneliest time of my life. i wanted some form of damage control but the damage was done and all that was left was so many emotions. Too many!
I did what i do best and kept them locked in a drawer in my head, then something else came along and I had to open the drawer and stuff more in, then something else came along and I had to stuff more in; then something else came along and I suddenly realised.. it just won't fit!


i literally felt my head & my heart burst. 

if i could save all those tears that fell from my face over that long lonely period, i'd have caused a flood in costa del Wythenshawe! i spent a very long time in room 20 of pearce ward.
i have never divulged this information before because it's not something that I ever would have thought i'd have felt and i'm not willing to say exactly.i'll just say i have never been so low and hope i never will be so low again.i thought the feelings would never go and there was literally no light in the day anymore. it was dark, miserable and just sad.
everybody could see that i'd lost me & my sparkle and everyone could see that these feelings and things where really taking their toll and my papa would tell me to "flick the switch" and keep a smiley face going because i'd have visitors coming that at the time I wouldn't want. i had my mum & my dad stay over a couple of times just for a little bit of comfort and support on really bad days :)

i think "flicking the switch" and pretending I was feeling better actually started to make things turn around and eventually, a genuine smile would appear for a tiny part of a morning or afternoon each day. just that glimpse of light was the best feeling because i finally understood & was certain that this big black cloud over me wouldn't be staying. i knew it would take a while but i was starting to get glimpses of sunshine and I can hand on heart swear that i thought the horrid thoughts & feeling would never leave but they where!!
i clung to those little smiley episodes. i wrote down about them, i kept them in my memory when the light had gone and I was back in darkness again, i still remembered that those feelings would go and they would!! they where going much more frequently and eventually, the odds where against them. majority of my day was filled with happiness & light and slowly but surely most of the week was.

it took a couple of months for the dark bits to go completely but they did.during that time, a "to-do" list I had wrote whilst having one of the worst days kept me occupied. they weren't major things to be done. they were just small daily tasks.

a few examples are:

- sort wardrobe out

- get hair coloured & cut
- buy new nail varnishes
- tidy out bedroom
- go to subway for lunch at least once a week!

but my main focus was


i had passed my test and had my own car but was so used to being driven around that i never drove. it suddenly dawned on me that I NEEDED to gain my independence back because I knew by doing that my confidence would just come naturally. so driving was top of my list as was keeping busy by planning things with people.
months zoomed past and I had gained so much confidence driving that it bothered me no longer and I loved driving! 

I was feeling so happy and confident in myself that I just loved life again and I felt so happy & lucky knowing I had done it all by myself with a little help from my best friend emily and support from my mama, papa, auntie max, uncle neil & Christian! 
I just had to keep swimming through that storm.

So everything was going great and I was sparkly and happy again and out of the blue without even looking for or expecting it an old friend popped back into my life and it took no longer than a few week and we were officially a couple.. as in actually Facebook official and everything! :p

That was just a little cherry on top to perfect it all really.

6 months later, i am as happy as can be, most confident I've ever been with how i am & how i look, making the most out of my time away from hospital and on the transplant list awaiting some brand shiny new lungs to help me really live the life I wanna live.

nothing too extravagant, just a cute little rented house, a job in a sweet shop ( preferably my own but i'm not picky :p ), happy with my little mr shaun & my dog Roxie as a little old lady and that would be splendid :)
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in a world of pure imagination

it's been a long time since i last updated this blog and i think it's been an even longer time since i updated people on how i am and things that have happened and changes and just basically where i'm at right now.

let's delve right in to the 20th of may 2013, i'm admitted to pearce ward with my usual crappy chest taking its toll on me! this time there was so much sputum.. it felt suffocating! i had my mum stay over one night it was making me that anxious. i was getting no sleep and was constantly coughing up pot after pot of sputum.. it felt never ending, i was exhausted and i genuinely struggled to catch my breath. my chest eventually started to get better but this scared me into thinking i needed to get my little peach on the transplant list pronto! i had majority of the tests needed for transplant assessment done and was looking at going home when something went terribly wrong!

it's not particularly something i'd like to go into detail with but it was a scary & shockingly painful time. scary for everyone who knew, the worry must have been dreadful for everyone. I'd just like to thank my papa who spent close to 24/7 with me for the horrific 10 days. Don't know how i'd have coped without my daddy. Not to mention; meraid the physio, roland my doctor and every single nurse who brought every pain medication under the sun to soothe me and everybody else for the patience and dedication & support. i have the best CF team going!

Nearly 2 months down the line of this admission and i'm thankfully through the worst of it all & heading very close to my twenteenth birthday!
I was so very spoilt yet again by absolutely everybody! My CF team made sure that it was the loveliest of birthdays even if i did spend it in costa del Wythenshawe!
Unfortunately for him, my very lovely boyfriend shares *cough* STOLE *cough* my birthday and so we both spent the 9th of July 2013 turning 20 in room 21, pearce ward :D
He is very lovely though so guess it is a pleasure to have to.. share.. my birthday with him!

Didn't spend the whole day in hospital, my papa had a very special surprise in store for me in the evening! We went to see ghost the musical which was incredible and of course i had a little cry :')

Been a little emotional turtle this past month :)
Think i've just had lots fluttering round my head and its tired me out a little.

Once scary situations were dealt with and birthday celebrations were over.. it was time to get the ball rolling well & truly with transplant. I had tons of bloods taken as my final part of assessment and then met with both a surgeon and my co-ordinator Katie who is amazing.
It was all discussed in details again and a few questions were asked and then i was left with a few things to read & sign and told that they'd discuss me in an upcoming meeting on the 19th of July and decide whether I'd be a suitable candidate to go onto the active transplant list.

I was discharged after spending two months in room 21!
Two whole months just zapped away, gone and wasted in hospital. I sussed out i have spent the majority of this year in hospital and we're over half way of 2013 already :(

19th of July came quickly and i had to call katie up to see what they'd decided.
"I'm pleased to tell you that if its what you want, the team is willing to place you onto the transplant list"
I heard her say whilst sitting in my grandma & grandmas house staring at my godson Alfie whilst he ate his sausage roll. That important day and all i remember about that exact time is Alfie eating a sausage roll and forgetting to put sun cream on my left knee & foot....

i decided i was going to keep the information to immediate family as i wasn't going to actually be listed until i had visited the transplant unit, had another meeting and signed everything over. So after informing people i wanted to inform, i head in my car to Emily's house for a day trip to Blackpool... forgetting the sun cream on my left knee & foot!
I burnt my left knee & left foot that day :')

The following Wednesday, 24th of July; i had the meeting, visited the unit & signed the papers. I proudly informed everyone that i Sophie Jayne Wheeler was officially placed on the active transplant list... as of tomorrow (25th of July 2013)

So there's a little whirlwind of a quick update! I will blog a few more times at some point too as have a few more idea's but it's very late & my peepers are shutting down on me! :(
I'll be one eyed peeping soon trying to type goodnight :p haha!!

I want to leave you on a little high note.. i fulfilled my BFOB (best friend of bride) duties on the 27th of July 2013 at Emily & Paddy Grogans wedding.
It was beautiful & lovely and i felt so privileged to even be asked to play a special role in their magical day.
Here are a couple of pictures to end on.

my gorgeous godson, Alfie <3

best girl & best man, my cousin matty

BFOB - Best friend of bride

BFOB & Mrs Grogan <3

My gorgeous Mr Shaun!

Goodnight & sleep tight...

Sophie xoxo
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a diary entry from lilly

hey guys,

got a big blog to write up about the transplant meeting I had but to keep you going till that's wrote up.. here's something I wrote last night after a lot of thinking and appreciating went on!

It was written; very raw and very vulnerably.
Both brutal and beautiful.. I debated whether to post or not but, what the hell is this blog for if not for me to express thoughts and feelings?

This the closing of a chapter and the opening of another. This is both the end and just the beginning.

Life is SO good <3
Night night bedbugs,
Sophie xoxo

Here goes.. ode to lilly the sailor- a diary entry of hers!


I'm not saying things were bad all the time but they certainly weren't good.
I sit here thinking in an outer body experience view sighing, "oh baby girl, what are you doing to yourself?"

Totally drowning in the sea of devotion, obsession, poison, firsts, adoration, hate, anger, betrayal, love.. pure first love.

Suffocating in my own sickening devotion.
Crippled by my total obsession.
Dyeing from poison that oozed out silently from candy coated first time memories of everything!
Disappearing into the darkness of my admiration for him.
Spiralling into an intense hurricane of unstoppable forces; anger, hate, love, hurt, betrayal, hysteria!
Besotted by my deep, irrevocable, pure, heart-racing, honest love that i had for you, for us.

i knew then, but i'm certain now.. your loss and it is your loss too.

And as for you.. you are not the one.. you don't deserve to be and therefore, you never will be.

this isn't for you or you, this isn't for me.
this is for that girl lieing on a bed sobbing everything she had out; day after day, night after night.
After she lost what she thought was everything but she knows now, they were nothing.
This is for that girl who no longer wanted to live another second feeling the pain she felt that couldn't be protected by a plaster or silenced and masked by paracetamol. no tablet or drip would stop the sickening agonising pain she felt.
No scan or x-ray would reveal the hole she felt in her heart or the lump relentlessly there in her throat.
This is for the girl who sat torturing herself for hours, tenaciously re-playing every tiny detail of memories and social networking sites for closure, proof, names, dates, HELP, words, clues.. anything just for it to stop!
This is for the girl who failed to accept, this was all happening so denied her own honesty and wrote a story of a sailor named lilly. this is for lilly.
This is for that girl who begged, prayed to something or someone she didn't even believe existed. Desperation made her plea and grovel on her hands and knees promising the shrapnel of health she was clinging to or every pence to her name just for that pain, ache, throb, hole, void, anger, sadness, emptiness just for it to never exist.
all of it to never exist.
even the good.. to never exist.
Even the best.. to never exist.
Sadistically, that wasn't true.. she wanted to cling to it for all it was worth because she didn't know all she was worth.

She does now.
So do the new people.

And you.. you don't exist.
You're a memory burried in the sand of that island that lilly floated on after the storm passed.
You are nothing but a memory.

I'm a dory fish from finding nemo.. I forget alot of things.
My memory is atrocious.. what's your name again?
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Day 28

Today i had subway for lunch and went to the cinema with Emily. We got the tickets for student prices because the cute guy at the till obv fancied me ;)

We watched Oz the great and powerful in 3D.
It's incredible. The story, the 3D effects, the graphics and imagery and i also thought the casting was excellent too.
I couldn't for the life of me think what film the actor playing the wizard of oz is from and so googled it just now. He is in the film, 127 hours.
In this film however, he portrays the character brilliantly.

I love mila kunis, just think she is a really great actress and it was nice to see her playing such a different role to her usual film roles.

Comedy actor Zach Braff is my favourite in the whole film.

Without giving anything away, it's set WAY before the original wizard of Oz film is.
The story is basically how Oz, named Oscar, became known as the wizard. I just think it is a great family film to watch over the Easter holidays.

i am defo no movie reviewer but i just loved it.. you should go see it for sure.

Well i am off to essex for the weekend so i best get myself some beauty sleep! :)

Day 28:- flower

i saw this online and want to buy it so badly as i think it's cute.. it's expensive for a piece of paper though!! i reckon i can find a way to make my own using a page from a book i choose! haha.

night night bedbugs.. up early for the drive to Essex

Sophie xoxo
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Day 27

Got a lot of people viewing yesterday's blog and a similar amount viewing each of the posts i linked up to it too :)
i like when people enjoy what i write, makes me happy.

i have been getting very out of breath today at the simplest of tasks. moved a lot of sputum though but it is stubborn to get moving. had a nice hot soak in a bath and then had TGI's with my mum, emily and my cousin paddy.
it was very nice and i now feel sick i have eaten that much. i had starter and main meal though today :)

i am very, very tired so i will make it a quick post tonight.
i have got my letter for the transplant clinic.

It is on the 22nd of April.
I think it is just for a chat with the transplant team, get a look around, ask any questions i have and then see where we go from there. this isn't the actual 3 day assessment, i don't think.

i'm almost certain i will be in pearce ward on the 22nd anyway so probably just get wheeled up to the clinic. my mama & papa will accompany me to the clinic appointment.

Not sure why but i was quite shocked when i opened the letter, i didn't expect to hear from them so quickly but guess it's a few weeks away yet anyway.

Depending on the weather, i have a weekend in Essex to look forward to for the time being. So long as this snow calms down. Don't know what it is playing at.

My first week out of hospital has been lovely. I haven't felt my best but i knew i wouldn't before i left hospital. I've just enjoyed being at home. Spending time with Beth, my dad and the couple of nights spent at my mums have been nice too.
Family time <3

Gonna keep as busy as possible for the next week though, i just think that way it's harder for this rubbish chest to get on top of me.. or at least that's what i am hoping :S

Got a few things planned and stuff so fingers crossed my lungs behave enough for me to enjoy these things.
Oh on a side note, i noticed the stars come out to prove me wrong tonight.. my grandad must have popped online to read my blog ;)
Good one grandad tommy! X

Day 27:- smooth

Well i haven't come into contact with anything smooth but tonight tucked up in bed i flicked E4 on and watched grease. I think danny is a pretty smooth guy.
So decided he would do.
Plus i love grease..

Tell me about it, stud!

Sweet dreams bedbugs,
Sophie xoxo
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Day 26

Got my eyes tested and get my new glasses on Thursday. Very exciting news of the day for you.
Been a very busy bee today actually, buzzed here, there and everywhere.
I want to get straight down to business and get on with today's photo challenge picture.

Day 26: Work

Well i don't literally have a job and i don't get paid to do these blogs but i like to see this as my work. It's something 'recently' i have been doing daily and have struggled some days when i have ran dry of anything to chat about but i have enjoyed doing it.
It's been nice having something to focus on each day and put it all together.

A lot of thought goes into each post.. most of the time.

I think i mentioned a few posts back that i had passed my 100th post mark.. woohooo.
I flicked back to an old post.. my very first blog post.

I had never done anything like this before and had always written and jotted things down on my laptop but just never shared these publicly for all to see.
I had been an rare user of the forums on the CF Trust website. I'd go on to nosey more than chat, i just wanted to know what was 'normal' and what was to be expected as i had nobody online (facebook or msn) who had CF at the time so i just would go on there to look things up i'd heard mentioned in a clinic appointment etc.

That's where i found out about this strange thing called, "blogging"
A found there were a fair few people on there who had their own personal blog, some where kept private for the chosen ones to see but most were open for all to have a read. So i did.

Reading these blogs made me feel like i knew these people, i understood what they were saying and how they'd describe their chest feeling or breathing being. It felt really good to know that there are people out there who 100% get where you're coming from.
I also am a very nosey person and enjoyed catching up on the gossip of some of the girls blogs :)
I first started reading a lady called Gemma's blog, i found her tales and her pictures of her cute dog absolutely lovely and i would look forward to a new post going up.

I had a coursework piece i had to do for my English speaking and listening assessment and as i was doing this really late into the year with being poorly all of year 10, i had free range to do it on anything i liked.. only catch was i had less than an hour to write it up. It was roughly 45 minutes and it had to be 15 minutes long this speech with a time slot for question and answers at the end.
While the whole class sat and read of mice & men and did a little quiz on the few chapters, i sat on my own quietly at the back scribbling frantically about something that would equate to that shiny A* in English that i craved so badly!
So what did i choose to write up on?
Me and my cystic fibrosis of course ;)

I found i got carried away and the worry was for nothing, i had written 3 back to back A4 pages full in less than 30 minutes. Easy part done.. time to speak out to the whole class about me and my spastic fibrosis.

"Hello, my name is.."
As if they didn't know already after 5 years of school together :(

My nerves were outrageous, i am a total loser when it comes to public speaking so i needed what i had written to pull me through the listening part when it came to the questions and listening.. that's why i was incredibly clever and choose something i knew like the back of my hand. My CF.
It went down a treat, everyone sat and listened so intently, i had tons of people asking questions.. some off people i had never been popular enough to be looked at by! it felt pretty damn good to be an interesting person, it felt pretty damn good to have so many people interested in Cystic Fibrosis. Even if as soon as they left that room.. it was all forgotten; it was locked into a memory cupboard somewhere in there head and they now had knowledge on a disease that for un-noticed too frequently. This felt good.

This is when i decided i would quite enjoy doing this blogging thing. I was nervous as my dad had drilled into my head all the bad stuff the Internet can do. My papa is the best papa in the world but his methods can be a little brutal sometimes.
"Hold my hand while we cross this road or you'll get run over and die!"
"Don't let go of my hand here or run off or a bad man will kidnap you and you'll never see us again!"
- and i sit here and wonder where my bad social skills and social anxiety has stemmed from.
Just kidding papa.. it worked didn't it?
i wasn't a bad kid and turned into a mighty fine young woman if i do say so myself ;)

He was also a VERY private person and i knew he would hate me being so vocal in public about me, my life and at times, my family too.
So i put all that aside, and set up a very basic looking blog and posted my very first post that i wrote as a piece of coursework, in the back of a classroom; in Counthill Secondary School at 15 years old.

It was called, Just Me.

After looking around, i then found Victoria Glen's blog, this is when i got a real insight into just what blogging could do. She had thousands of followers, people who were reading every single post and awaiting that one post that meant the world to Tori and her dedicated followers.. "The call" post.
That post that confirmed that after SO MANY false alarms.. that call had come. That one call that would change her world. That changed my world. I was suddenly thrust into this world of knowing what transplant was, knowing that one day that would be me and i needed to prepare myself for that day.
So i looked up some more people and i followed those.

Novelty wore off with blogging for me.. things were changing, i was changing and my concentration shifted to my health. I had been out of school and had attempted college but had to drop out, i was put on a overnight ventilator called a bi-pap machine and the word transplant was being tossed around by my paediatric team, this came hand in hand with adult centre.
This is where i fell back to my safety net of blogging, i wrote one blog when adult centre was introduced and then i went silent again as i fixated on getting my arse in gear. I was not prepared or ready for transplant journey yet.. Not yet.
This blog was called, Fresh pair of eyes.

I met a few friends in the adult centre but the adult centre was a different ball game, i lost 3 beautiful friends and each blow was a mega hit to my confidence in everything i had built myself up on.. positivity and optimism.
This new thing was spreading through my rainbow flavoured veins and turning them back into what they were.. just veins. Not rainbows.. Veins.
It was called reality. It hit me harshly in the face when i lost Holly and i lashed out with a very angry post called, sweet dreams holly. X

I started a photo challenge and this got me blogging daily but once it was done, i fell back to silence again until another bad hit blew me up. This one broke my heart.
I lost Laura V, my homie .X
This post was called onwards and upwards.
It was a mixed bag of good and bad news. The bad outweighed the good at that time and i cried so many tears..

I had a few posts in between then and the end of last year but not many. Then last year was the worst year of my life so far and i had hot a wall of utter desperation. I had no way to crawl out of this pit of helplessness and so i blogged, i offed in the best way i could trying to keep the true meanings for things under wraps to keep personal things personal. But i just had to find some healthy way to let these toxic emotions out and so i wrote Lilly's story.
Part 1
Part 2

Lilly's story has yet to gain a part 3.. i am on it ;)

I was half hearted with feb's photo challenge but think i have redeemed myself with march's so far.
Which alas, brings us to today. This post, right now.
Personally i love my old school blogs, back when my biggest dilemma in life was which playlist i was going to play in the gym or had i done enough revision for maths module 3 GCSE exam :)

So there we have it, a history of Just Me Sophie Wee.
My work place, my work shop, my counsellors office, my shrinks chair, my girly matter with my besties. All rolled into one for my delight and yours too if you're still here reading :)

Sleep tight bedbugs
Sophie xoxo
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Day 25

I have been listening to a song called superwoman by Alicia Keys tonight on repeat.

I was having a moment to myself feeling annoyed and frustrated as it became apparent that i am not capable of things i was and yet somehow i keep trying to convince myself that i am.

tiny little things like, getting a wheelchair round tesco's. Which is something i definitely would have done prior to the most recent admission if i was feeling how i am feeling now.
My dad asked if i needed it today and i immediatly slammed him down with a "No!"
Then i felt the twinges in my calf muscles and the crackles in my chest and thought, 'why am i punishing myself? why won't i just accept that i need that bit of help at the moment?'

People are telling me i can't and i am trying to prove them wrong but all i am doing is more bad than good. Wiping myself out of energy, energy that i need at the moment because sleep is something i am clutching at straws to.

My physio put together a little exercise routine for me to do daily which consists of the most minute exercises but they're really working me hard.
My aches and pains are proving that and the breathlessness too.
They literally consist of 10 standing up from sitting downs and 10 arm & leg stretches.
that is it.

I have got an eye test tomorrow in town and i had it all planned out what i was going to do tomorrow, every little detail was down and then it dawned on me that i wont be able to just park my car and walk all that way to the specsavers like it's a doddle.
Not just that, i also had planned to then have a nice walk round the shops in town; just to be nosey and pass a bit of time having a people watch etc.
As if i am gonna be able to do that.. hahaha.
I don't know what i was thinking :')

It's crazy this shift in my mentality, it's like i am going into some sort of denial. I wouldn't ever have decided walking round town would be a good idea even a few month ago so what makes me thing i can do that now i have no idea.
My dad is somebody who will push me, if i want a chair round tesco, my dad will be somebody who will think it will be best for me to use the trolley to lean on round tesco instead but even he was shaking his head at my crazy little itinerary for tomorrow all by myself. hahahaha.

Wake up turtle.. slow and steady wins this race.
No good trying to do everything when i just need to take my time and accept the help where it is needed.

I like the lyrics of the superwoman song though :)

"Let me tell you, I am a Superwoman
Yes I am, yes she isSee, even when I'm a mess, I still put on a vestWith an S on my chestOh yes, I'm a Superwoman"

Day 25: Shiny

Today's photo is of something shiny and let me tell you there is nothing that shines brighter than this diamond of a girl. 
Miss Bethany Paige Wheeler.
She is my sister believe it or not. We look nothing alike, we are complete opposites in everything. The things we like are different, the things we don't like are different, our style is different, our looks are different, our personalities are different. There is nothing the same about us apart from our humour. That is something we can both treasure together. 
I am very serious about education and intellect whereas Beth is way more chilled out about it and would rather have fun than get her head down and study because she hates school but i was geek and loved it. We swap when it comes to our temper, i am rather chilled and easy going and take things in my stride, but Beth loses her temper quite easily and can have a major stress-tant-emotion blow out at the click of a finger. I am very emotional, compassionate and loving and Beth is very introvert when it comes to showing any affection or emotion. She keeps all that locked up.
She is the funniest kid i know and she has her moments where she'll do something so lovely it could make you cry.. yet they're very rare. She has the best laugh i have ever heard. She's got a very unique style but she rocks it. I think she is the most beautiful girl i ever did see and she doesn't even realise. Her confidence is building but she has a way to go. Her eyes are lovely and are my favourite. I am jealous of her legs. She can sing like an angel but doesn't know how good she really is. She can be a little bugger at some points and is the messiest person i have ever had to share a bathroom with but she's getting better!
There was a point where i had a little melt down over something and Beth stepped into big sister mode for a little while. She gave me hugs when i needed them, wiped my tears before they fell and stroked my arm to soothe my little throbbing heart. She said all the right things more so than most the grown ups where doing because she's my sister.She is the most important thing to me now, aside from myself and my health. I would do anything at all for her and would put anybody who hurt her on my hit list.I really wish she believed in herself more because if she has just a smidgen in the confidence i have in her, she'd be unstoppable, a real life superwoman!

i miss the days of her mithering to play school or shop or to watch bear in the big blue house with her. i miss spending that time with her but she's 14 and she's cool and i am 19 and pretty damn not cool but i'm okay with that :)we also have next to nothing in common but i think if she walked in my room one day and asked for a cuddle and a sleepover with movies i might just cry because i am far too emotional for my own good :)i love when she comes in my room randomly says hello and just chills out with me. it makes me feel all nice and warm. 
i think once she gets a bit older we will become much closer than we are.. we're just at different stages and like different stuff. i will be right here whenever she needs me for anything at all though.she is so beautiful and i love her so much.my boogle

Sleep tight bedbugs.Sophie xoxo

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Day 24

Had the worst night sleep ever last night and so i am afraid today's will have to be short and sweet because my eyes need to close.

I knew my chest wasn't great when i left but it's rubbish already.

Got hardly any sleep, was just coughing crap up all night long. So i slept half of the day away today, then had a big walk round a shopping place, then cooked my tea, then played dominoes with my dad and won and now i am snuggled in the pitch black watching miss congeniality on channel 5.

I am just so tired, i didn't get the chance to put my all into today's blog and so i am sorry there's nothing of interest really but i know you all understand :)

Day 24:- Dream

I didn't know whether this was supposed to be a dream meaning an actual dream i have at night or a dream as in, something i aspire to have or be one day etc.

After some thought i decided a picture of something i dream/aspire would be easy and less complicated, strange and graphic as my dreams.
My dreams are pretty damn bob right now, they're just very annoying.

So if you know me by now, you'll know how much i love sweeties. My dream is to have my very own sweet shop. It would be amazing and sell the most delicious sweets. I don't want to put my ideas up just incase some sneaky willy wonka fella robs them; because let me tell you.. they're brilliant ideas.

Let me just say my sweet shop would be the best because i can guarantee nobody would love there job more than i would. I think when you love what you do and do what you love, you must be the best around :)

Night night bedbugs.. fingers crossed for a cough free night with some of those sweet dreams!

Sophie xoxo
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Day 23

man this blog is looking pretty damn serious as of late.....


i was reading through my really old blogs because i am just very vintage like that. i started blogging at the beginning of 2009. 
this blog has been up and running for 4 years. i don't blog often and in 2012 i probably only did 3 or 4 blogs, i noticed a pattern:-

when things are bad, i blog.
when i don't have a boyfriend, i blog.
when i am in hospital, i blog.
when i am up coughing at night, i blog.
when it's super last minute an i haven't started day 23's blog, i blog.
when i find a photo challenge that i decide i WILL stick to and usually always fail, i blog.
when i am severely bored but manage to think of something i convince myself is something SUPER interesting to share with you all.... i blog.

so i thought this would be quite light hearted and short & sweet for you all. a little break away from serious me with all my serious things to talk about and talking about my transitioning into a grown up.
and it's really late and i am so tired :)
i'll work on tomorrow's blog all day tomorrow, promise it will be my priority.

Day 23:- a pair

these two are a right pair!!!
i couldn't have picked a better picture to represent a pair better than this pair!
i have never laughed so much as i did at these two on Friday night.. all night long. 

how can you take life so seriously all the time when you have this pair in your life?

i have my sister, beth reminding me to keep that inner child lit and have fun and scream and shout random things in the trafford centre with my 12 year old cousin because that's just what kids do. 
i have my cousin, christian reminding me that no matter what your age is.. you don't ever really grow up, not properly.. how boring would that be? 

beth is quite possibly the coolest kid i know which is probably so uncool coming from me a geek of a big sister but regardless, i love her so much even whilst wishing i was big enough and hard enough to give her a clip round the head every now and again ;)

christian is my homie man. got so much respek! nuff love bruv... innerfistpump!

night night homies!
sophie xoxo

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Day 22

Do you ever wish there was a button in life that brings down a massive red curtain like in theatres and covers up stuff in your head that you don't want to have there anymore?

It's just like, you push the button, the curtain drops and poof it's gone.. as if it never existed.. forgotten?
wouldn't it be nice?

so today the weather has been a ball of poo.. it's snowed and been freezing and i have just not felt like braving the gail force winds today. luckily i had some parcels to wait in for so stayed nice and chilled in joggers, hair tied up and a loose top.

i thought I'd get into my artistic flow.. i sat on my windowsill and i just looked outside at the absolutely gorgeous view from my window from my papa's house.
it's just really beautiful. sometimes i think i get so caught up in people and situations surrounding people that i forget to look at the world..

don't want to go all hippie on you but i forget just how much i appreciate the view sometimes.
i particularly like the view at night time when everything's pitch black except the lights on the streets and in houses and on cars etc.

When i was feeling really sad, down and just a little lost.. i'd drive to a little car park in oldham and lock my car doors, put some music on and just look at the cars driving past in the tea time traffic and sometimes I'd wait for it to get a little darker outside and go to the same spot just to see the lights shimmer like glitter sprinkled all over the place.
it's my favourite thing to look at that i can look at any day i please.

i would love to be able to look up at the starry night sky but that's long gone in this country these days :(
after watching sky gazing with professor brian cox a year or so ago.. i now know that we don't see the stars because of light pollution.
which is ironically what i love to look at the most in replacement of a starry sky.

i remember when i was a younger kid, i used to always see two stars.. one baby one and one big one. i was absolutely adamant that the big one was my grandad. 100% certain, i'd say goodnight to it in bed every single night!
i don't think anybody in the world knows that.. maybe my dad does, i think i told him a couple of times on the rare occasion that i see those same two stars :)

it's funny now i am older and obviously know more and i'm better educated now but it used to astonish me and just add to my certainly that those two stars where my grandad looking at us and watching us because I'd not only see them at home but we used to go to Salou every single year when i was a child and I'd see them there too!! I just assumed he'd followed us to salou to keep his eye on us while we we're on our holiday!
i think it's dead funny now but it completely amazed me when i was younger. i used to be really smug about it and quite cocky because I'd think, "my grandad must love me the whole world enough to follow me round it!"

when you're a little girl.. that's pretty damn impressive!
i think i kept it secret because deep down i felt a bit silly. my grandad died before i was even born but i can picture his face so vividly from one photo that is in my nana's locket.
i used to sit and talk to those stars when i had a story to tell about my day or a question to ask and in my head, i would imagine him laughing or something :')

to this day, if i want something bad enough or just want that little but of help or guidance or extra love.. i close my eyes and i ask my grandad for it!
is that a bit weird?
i don't believe in "god" or any of that stuff but i genuinely believe that my grandads around somewhere and if he can help, i am sure he will :)

i had a little falling out with him around November last year though.. i was in a rough place and i was begging him to help me, just to make me feel better.. i didn't want to feel how i felt anymore and he wasn't listening to me.
it wasn't working like it usually did and so i had a sulk and felt let down by him :')
very mature ;)
after having a conversation with my papa, it occurred to me that what i was feeling wasn't something anybody could help me out with.. i just had to ride it out.
i did and i guess sometimes it feels like i still am judging from my question at the start of the blog about a magic button..

i'll get there. metaphorically speaking; i am not needing the pain killer really now.. just wishing there was some almighty plaster to heal this baby up good and proper.

just figured i had to start being independent, girl power doing it all on myself and stuff. i miss feeling like i got that connection with grandad tommy though.. might have to start up these night time chats again.. I'll have to hunt those stars down.

Day 22:- sometimes i....

don't know if you have noticed but most of these pictures are either not if me or i am pulling some sort of face.. that's because sometimes i like to pull funny faces on camera!

i think they capture a memory better than a serious shot and you feel less of a for taking it surprisingly :)
overall, it just makes me happy laughing at the photos i take of myself because i am my own best friend and i think i am hilarious :p

night night bedbugs...
sophie xoxo
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Day 21

i am free

i have escaped costa del pearce ward for the Easter holidays.. haha
i was allowed out today after just passing the 5 week mark yesterday, my longest admission so far.. do i feel the benefit? 
will i have to go back sooner than i want to?
BUT at least i will have had a couple of week at home and a few days in Essex which has been all sorted with the oxygen people so should be delivered to my auntie's house for when i get there.

i can't tell you how nice it is when you get a message, comment or tweet off a parent who has a son or daughter with Cystic Fibrosis telling you things like, they love reading my blog or that i am an inspiration to them and sometimes they're blog mumma's telling me that one is due up or asking if i am okay when i have missed a day or two. 
it's lovely when i get those messages off of anybody, whether that is family, friends, friends of family, strangers or other CF people. 
on the blogger i have the opportunity to look into the details of behind the scenes of my blog.. it allows me to see how many view a post gets or how many people have viewed my blog in the past 24 hours. it allows me to see what country people have been reading it from and how many people have read it from there. it also allows me to view how people stumble across my blog and it's posts.
usually it's from another person's blog and i am on their "recommended" reading lists or it's by following a link shared by myself or others on twitter, facebook and other social media. 
strangely, what people type in google and then they end up coming onto my page via whatever they've searched.. it also allows me to see what people are searching to happen to stumble upon my justmesophiewee blog. 
occasionally, it's something such as, "sophie wheeler's blog" or "just me sophie wee blog" or Cystic fibrosis patients blog"
you will be surprised how many times people search for "clubbed nails" and it's led them to my blog. how rude is that of google, to point out my blatantly most hated thing about my body and allow casual strangers just leisurely strolling the internet for clubbed nail info and takes them to my precious blog. 
so i thought i'd give those peeps checking out clubbed nails out there a big hello or ola or bonjour or aloha AND most importantly.. don't panic, this does not mean you have Cystic Fibrosis and are now heading on the transplant list :)  
it just means that if you are seriously concerned or worried about it you should probably go to the doctor rather than google.. it can lead to crazy stuff like me rambling on about my pretty awesome life. 

on the other hand... welcome to my blog. 
please keep coming here and giving me a read it cheers little ole' me up to know somewhere in this world people are reading what i write and are hopefully enjoying giving it a read. 
i think it's cool to have a nosey at how other people live.

i have distracted myself from what i was wanting to talk about...

Hello to my CF mama & papa's!  
seen as though there seem to have been a flood of you coming on to my blog for a catch up on how i am doing or just to have a see what things i have gone through and will be going through. 
it has just occurred to me, that especially with this transplant thing going on at the moment; i guess i just suddenly wondered how you feel reading these things? 
it's got me wanting to watch what i say so it doesn't worry any of you or scare any of you. 

Please. you MUST remember that every single person with Cystic Fibrosis has their own personal imprint on it. it is the most complex and complicated disease i have ever had the joy of possessing. 
no seriously, there are no two CF patients that are the same and there never will be. 
the slow progression and decrease in health happens with us all yes but at what speed and severity is something that can never ever be pin pointed at any moment in time.

i just had this vision of you all reading and panicking and i didn't want that but i also don't want to be sugar coating things or hiding things as i like being open and honest in my blog; not for all you who read it but for me too. 
writing things out and reading them back later really helps me take things in more and understand them more. i also enjoy looking back weeks, months and years later and remembering how i felt when i wrote something and remembering what was going on at that point. 
you all know by now what i am like with words. they're magic and should never be underestimated. 

on that note, i would like to also just quickly add that i have always seen CF as both a burden and a pleasure too. the bad things are absolutely dreadful at times of course they are and especially right now i am feeling like it is more of a burden than a hidden blessing but i still really believe that it's given me such an amazing outlook on life that i genuinely believe i wouldn't have if i didn't have CF and took the smallest of things for granted. 
i obviously know that a lot of these things are my personality and i know some CF people who are miserable farts that just complain and then do a bit more and then finish off with some whining and it gets on my nerves. haha.

i'm not saying i don't sit here and complain and get frustrated and down and whine and moan but i don't tend to publicise that or at least not a constant supply of it for you all to hear. some things are just better off kept to yourself. 
in reflection of my whining and moaning, i always sit here with a smile on my face thinking how much i love every little bit of life. 
i can't complain really, i have a whole lot of love in my life and i don't think there is anything that matters more in this world than being loved and loving back. 
you have to love the life you live, don't you laura? <3 div="">

so if you're all still with me and you haven't given up on my long winded ramblings from a very tired sophie wee after a busy day of packing, unpacking, playing with roxie and eating; it is time for the picture of the day and then some bedbug love. 

Day 21:-  Hat

this is the only picture of me in a hat that i have on my i-phone. 
it's me at Christmas with my sister Beth and am wearing my obligatory crimbo cracker hat. 
i just don't feel like i suit hats so don't tend to wear them unless i really, really like it or think i suit it on that particular day :) 
us girls are funny aren't we?
okay well it is late now and it is time for me to do my azli neb which is now mixed and then plug my headphones in to listen to my new audiobook in i-tunes :D
i am deciding to give these books a go as they're my uncle Neil's favourite's and we seem to have similar tastes and views so thought it is worth a try. Northern Lights books which are the Golden Compass books. 

Anyhoo.. night night bedbugs. sending lots of love and peace and flowers dudes! (i love squirt the turtle from finding nemo- okay it's really time for bed now :S)

Sophie xoxo

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Day 20

Feeling pretty popular to be honest with you all, i noticed i have had over 400 views on my Day 19 blog.
I was so shocked and impressed by that. That's 400 people interested in what i have to say.
400 people that have been reminded of organ donation reading that blog. 400 people that have a little more insight into my life with my Cystic Fibrosis.

My doctor came in today just to make sure i was still wanting to go through with everything before he sent the letter off. Of course i said yes so the letter has now been sent off to the transplant team and now i just have to sit and wait to hear something in around 4-6 week.
I am going to estimate that i'll probably be on the ward when they have time to see me.

Today i was took off promixcin and trialled on a new antibiotic nebuliser called Azetreonam.
We're hoping this does more than what promixcin did for me.. which was NOTHING!

Here's the news we have all been waiting for.....


my lung functions are back down again to 0.85 from 0.9 so not a huge difference but i have been in for 5 week now, it is most definitely time to go home for a bit and i am even off on a little holiday to visit family over the Easter Weekend in Essex so that will be lovely. I am really looking forward to it.

I have a few things i want to do while i am out:

  • i want to get a gym ball as have been doing some exercises with physio using the ball and i want to keep them up.
  • i want to eat TGI's, Subway, A cooked chicken from tesco, Florida chicken and dippy egg & soldiers.
  • i want to go to the trafford centre and hunt a new sweet shop down that i have been told is a recent addition there. So going on Saturday with Emily :)
  • i want to get back into the gym.
  • i want to HOPEFULLY start my college course that i was supposed to start when i came in.
  • i want to buy some things for my new room at my dads, new bedding etc.
  • i want to get a bit more creative
  • i want to go clothes shopping with my papa one day, he is good at clothes :)
  • i want to go to bingo!
  • i want to go to a quiz night and pretend i am on the chase :)
  • i want to go for a little drive somewhere nice
  • i want to continue playing my billy bob ukulele!
  • i want to hear my dad's band play again :)
  • i want to attend Alfie's first birthday party
  • i want to go swimming with my sister
  • i want to take my sister out more, just me and her

so that should keep me busy for the 2 or 3 week i get out!
have to squeeze Essex into there for a few days too!

Day 20: above

when i lay back on my hospital bed, the thing i see above me is white tiles.
in this room, there are 48 tiles.. i counted them whilst unable to sleep one night
7 tiles length ways and 9 tiles width wise but then the some of the room is cut short by the en-suite bathroom. 
i used to always say when i got my own house, i wanted a room painted black, with black out curtains, nothing in the room but cushions, pillows and bean bags and blankets and on the roof, i wanted lots of little lights drilled in the ceiling to create a starry sky effect. 
i just think it would be such a lovely room to go and relax in and probably fall asleep in too. 
when you look outside at night now, you're lucky to see a couple of stars.. it makes me sad :( 
so i thought if you cant see the stars at night, see them all the time in an artificial night sky room! 

sweet dreams bedbugs.. 
sophie xoxo
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Day 19

Lets start off on a random light note, before we head on to the results of a meeting had by myself, my parents, a nurse and my CF consultant.

Just been watching Sir Ian Mckellen on a catch up of the Jonathon Ross show. Some of my favourite films are the X-Men movies and my favourite character being Magneto played by the wonderful Ian Mckellen!
Don't you just love his voice?
I could listen to it all day long.
I'm very excited to hear a new X-Men movie is on the horizon!
I'm a little bit of a Marvel nerd and love every film i have seen by the captivating writers!
Marvel beats DC in my personal opinion.. however loved batman.. hate superman!

Anyway, back to reality. Take my cape and glasses off (i hide my nerdy side in a corner)

Today i had another discussion with my CF consultant, this time, my mum & dad were present so they could take in everything and also ask any questions they had.

I wanted to have the first discussion on my own so that i could figure out what i wanted all by myself with no influence off anybody else but me and the information from my doctor.

My mind was already made up as soon as the words, "you are in the window of opportunity for transplant, you don't want to miss the boat" came out of his mouth.

Numbers wise (i,e lung functions and sats etc) i have been in the window of opportunity for a long time.
BMI wise, i am in the ideal range which has took me a while to do but i got there and have stayed there!
Lungs wise, they have an obvious amount of damage that can't just be mended and fixed by the amount of antibiotics they have thrown at me.
Quality of life wise, i spend more time in hospital than i do my own home.

This time last year i was managing 6-7 week out and needed just 2 week of IV's. I'd go home and do all the things i wanted to do with a moderate amount of ease for someone with my lung capacity.
We move forward to the present and i go no-more than 2-3 week out and stay in for 3-4 week. Those 2-3 week spent at home are a struggle and by the 2nd week out, I'm no longer managing tasks such as having a bath, walking upstairs or getting ready without needing oxygen to recover. I put off going out and going places due to just feeling really crap chest wise. It's not enjoyable and so staying at home and chilling out is far more appealing.
By the 3rd week, i have lied and said I'm still not coming in for IV's as I'm "not too bad" then i am spending most of the day in bed doing clearance and nebulisers and just trying to make my chest feel sufficient enough to want to move. By moving i mean, walking downstairs where i will stay all day in my pyjamas only moving when my bladder can no longer withstand holding in anymore urine because walking to the bathroom which is conveniently in the next room to the living room is just too much effort. It's not what a 19 year old girl should be doing with her life. It's not what anyone should do with their life.
Appetite is usually nothing but a nibble of a sandwich at lunch (which is usually brought back up through violent coughing) and a child's portion at tea (which is usually brought up via violent coughing at night time physio)
Absolutely wiped out of energy, if i am lucky enough not to be up coughing all night, I'm fast asleep before my head hits the pillow.
That is my life.

I sound like a pretty ideal candidate for transplant right?
Get me on the list asap right?

There are so many hoops & hurdles to come before i am even included in a huge discussion by all the transplant team to decide whether i will be placed on the active transplant list.

Firstly, my consultant is to write a letter tomorrow to send me over for transplant referral.
This I'm told can take up to 4-6 weeks before i hear anything from it.
I will then have a transplant assessment which has many tests and scans and disscussions with various people from the transplant team.
I have a few "red flags" though that i am a little concerned about, that may make the transplant team be put off placing me on the list.

Thank fully, a lot of hard work, perseverance and determination means my compliance with treatment is no longer one of those red flags.

I have two major red flags.
Firstly, being my previous lobectomy surgery and the complications that can cause during the transplant operation making it too risky to perform a transplant.

The second is a bug that i grow and have done for around 7 years now. It's called ralstonia.
I'm not certain as to why this is a bug that makes the transplant team a little weary but i think it's due to how stubborn and aggressive the bug can be.

The thing that works well for me with regards to the lobectomy is that the surgeon who performed it back in 2008 was an absolute angel and was pretty sure she'd done a good enough job to not hinder my chance of new lungs in the future.

As far as the bug goes, I'm not a doctor and i don't know anything about bugs but what does stand well for me is that i still respond to anti-biotics; as stubborn as this ralstonia may be.. i always bounce back after IV's. i am hoping this will stand well during discussions with a transplant consultant.

I haven't had the tests and scans done so i don't know if any red flags may pop up in any of those but going into this regardless of the assessment, those are the only red flags my consultant has raised.

As positive as i need to be and am, i am also staying very realistic in knowing these red flags may result in the team deciding a transplant would be too risky to perform.
I'd accept that and would just have to continue doing what i am doing now which is fighting as hard as i can!

So Doctor Bright Thomas is writing my referral letter tomorrow and the ball is now rolling for which will hopefully be the start to my transplant journey.

Day 19:- on the floor

Alfie lee brown, my godson.
I know that this isn't on the floor.. it's actually on the hospital bed but i just love his cheeky smile and sheer joy in his eyes.. no not at the pure love and admiration for me, his beautiful god mother! No it was due to a light switch flicking on in his head; as he comes up with the great idea to pull my oxygen mask and then let go of it.. thus me being slapped in the face!
Sneaky little cub.

Time for bed now, it's been a very long day!

Sweet dreams bedbugs..
Sophie xoxo

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