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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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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