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!

BOOM...

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

BUILD CONFIDENCE IN DRIVING.

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!


Reflection~

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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