lilly's story continues..

i didn't think lilly's story would continue.
i didn't think there would be a "next" for lilly but apparently there is.....

the night crept up on me like it did every other night but this one felt different.. i felt sick to my stomach.
i gripped a tight hold of that little float like there was no tomorrow, i knew if this one slipped away from me, i'd be a gonner! this thunderstorm was brewing tonight and i was completely alone in the darkness. the rain belted down on my face, piercing it like little shards of glass. i saw that old float that i longed to come back just circle round me a few times, it was as if it was taunting me, laughing at me struggling while it bopped along carefree!
the air and sky turned darker, colder and louder. the thunder and lightning crashed down on the surface.. creating an almighty tidal wave. i was thrown into the air and then smacked against the bottom of the seabed as the waves tumbled on top of me, keeping me down. i lay there submerged, i just wanted to stay here. i was suffocating, the pain, the heaviness.. it was nothing i had ever felt before and i was beaten like never before too.
"YOU WIN!!" i screamed, gulping more sea water as i did so.
"YOU WIN!!" i screamed again.. i was a broken shell of the who i used to be.
"I CAN'T DO THIS ANYMORE! I DON'T WANT TO ANYMORE! I CAN'T!" i pleaded, willing it to stop with my pathetic cries.
"I GIVE UP.. PLEASE! LET ME GIVE UP" i begged as the pain and heaviness got worse.. i couldn't breathe as my eyes closed just when a flash of lightning struck.. that light stayed shining in my eyes, burning.

'is this the light everyone talks about?' i questioned?
'is this the light that guides you to the next destination?' i wondered.
i woke with a splash in the face off this little red fish. it was a ronjon fish. he told me the light was what people had been talking about.. not the light that would take me on my next destination.. just the light i had to see to know it's not all darkness, there is a light at the end of the tunnel.
he told me things that made me feel understood, made me feel like i wasn't alone no matter how much it felt that way, made me feel like this is just an end of one chapter and that another was just about to open up...

chapter 2.
a few days have gone and the storm seems to be calming, i daren't speak too soon.. i see no sunshine yet.. just flickers of sunlight every so often.
there it was.. i rubbed my eyes, once, twice, four times!
'am i dreaming?', i thought to myself.
the sand looked as white as a bed of white roses.
the palm tree's swayed to the waves that were carrying me along to this beautiful place.
i saw a little island and it was real, it was right in front of me.. i just had to kick a little harder.. i just had to cling to this float just a little while longer but i was close, i was real close now!
what was this feeling of apprehension?
i know what it was.. as my grip tightened around the sturdy float that i had clung to over the final few days of the storm.. i realised i was nervous. nervous to be out of my bubble, to let go of what had become my protection from everything bad that had been going on.. i didn't need that float if i stepped foot on land.
i was scared.. can i do this on my own?
can i do this as my own person?
i had to find out.. i'm too nosey for my own good to not have a see!
i just had to kick a little harder.. i just had to cling to this float just a little while longer but i was close, i was real close now!

.... to be continued.
i left you with a question last time, this week it isn't a question anymore!
it's a statement to anyone who can relate to lilly, who feels like they completely understand lilly's struggle.


this song is a brilliant one :)    
i love matt bellamy. the only men i need in my life are my papa, my grandad, my ronjon fish and mr matthew bellamy
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sophie who?

*****  SPOILER ALERT :')  ******

this is not a good blog.. this is not a happy blog and this is not one to sit and brighten up your day.. YOU HAVE BEEN WARNED :')

this is to see if typing it out, helps my brain shake it off and carry on. i don't want comments or anything like that. this blog is for me. i don't think many of you read this anymore so that's okay. this blog has always been mine. somewhere to look back and reflect.
if you don't want to read this, stop now and continue with your day :) ...  I hope you have a belter! xXx

For those of you sticking this out with me, HI :)
i hope you are all well and ready for a walk through my very smashed and jigsawed head.. enjoy the ride. i am a metaphorical crazy lady so i hope you can keep up.
it's like Alice and wonderland in my head at the moment... utter NONSENSE! Madness even.
Uncle Neil, there shall be no spell check or grammar check on this blog, i'm typing as it comes with no stopping so forgive my faux pas!
let me tell you a little story about Lilly the sailor.

so i had to abort ship today.. jump into that big blue sea and swim.. swim for my life!!!!!! :D

..... a few days pass....

i have been swimming along in the blue sea quite chilled and calm, things got a little choppy, the weather changed and the rain came, i struggled but stayed afloat, a little float kept me going.
i clung to that little float like there was no tomorrow because it felt like if i let it go.. there wouldn't be tomorrow, i wouldn't stand a chance in the storm that was brewing! so i clawed at it, losing my grip more and more until it slipped out of my hands. that little float was gone and i was alone when the clouds rolled in on a dark, cold Thursday night. the storm was coming and i was alone. i was scared and i was lost.
not long after the gods opened and they did their worst! thunder, lightning, rain just pouring down.. bouncing off the waves that were crushing me every time they crashed. i was sinking, i was going down.
i was letting myself go down.. i wanted to stop, i was tired, i was lost, i was shattered, i was alone, i was confused.. i was broken. i didn't see how i couldn't just drown in this storm.. it seemed to big for little ole' me. i missed that little float, i needed it the most right now!
the thunder & lightning passed but the rain remained to pour. the storm left me battered, i was beat.
i was finding little pieces of debris floating along on the sea and i clung to those pieces for a while till they weren't enough and the next piece came along. i was losing energy. i was losing it fast.
eventually another piece of float came bobbing along and i kept reaching onto it but losing my grip every so often. the rain keeps pouring down on me and it makes it slippy to keep hold of. the float keeps stable though.. it seems sturdy, it doesn't look like it's going anywhere for another 3 or 4 week! slowly that little float is building my stamina up, it just seems to be taking a very long time.
every now and then i think i see that old float of mine but i know that's gone now. i have to cling to this float for a while it's doing a good job. the rain is still pouring down. sometimes it rains alot heavier than other times. i can't see the clouds breaking yet.. i can't see no light or any cracks for the sun to shine through.
someone took my sunshine away! 

so i am bopping along in the sea.. i'm not always alone, sometimes some little fishes swim past and let me know they are swimming in this sea too.
they want me to follow them so they can take me away to some better days but i'm tired of swimming, i just need to get my energy back, i need to build my strength up, build my confidence again.
it's at night when it gets real dark and the wind picks up that it's the worst.. it's suddenly a much more deeper sea. the rain still pours....

i keep asking this rhetorical question, sometimes i just say it out loud to myself. sometimes i just ask it randomly, willing for people to remind me the answer. i know the answer and i know it's not as far away as it seems but... it can't rain ALL the time can it?

:) the answer is no! no it can't.
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i'm finding me.


so i have changed the background again, i'm thinking i'm gonna change it with each post... keep it fresh and i like change. change is nice, it's refreshing!
i have been in costa del wythenshawe for 4 week now, it doesn't feel like 4 week.
is it possible that you can be in one place or situation for so long that you don't even notice the time going by anymore?
go on... ask me what day it is at some point next week and see if i know the answer :')
i more than likely won't!
EXCEPT for MONDAY! (9th of July)
i'll be the birthday girl. it's my first time being an inmate on my birthday, i'm going out for tea today to TGI Fridays so that shall be very nice.
before i came in hospital, i downloaded the kindle app for mac and thanks to that, i have reKINDLEd my love for books this admission... ;) you liked my joke huh?
6 books i have gotten through. i love to read, i love to write too i just never get to it.
i've had a brilliant idea for a story, a book? i don't know what it is. maybe it's just an idea that needs to slip back into a box somewhere on a shelf in my head :')
i wouldn't even know where to start with it.
i read through notes i've breifly typed out whilst in a inspirational moment and think, "your grammer and spelling is atrocious these days!" :(
it's sad, the one thing i have always felt most confident and self assured about is something i've let slip and it's slacking! i need to study some more.
just online stuff maybe?
i'm wittering on here and boring you but these blogs started off as somewhere for me to just write and go off on something i wanted to blog about. inspiration has run dry guys. i have nothing i want to share with you and i don't want to turn into someone who goes on about what happened today in her life of CF and CFRD and life at home with roxie or life in costa del wythenshawe so i just stop.
i always find myself here again :)
it's my safety blacket, mine. something i've still got hold of.
i don't mind if nobody is reading, it's my journal. not to be mistaken for a diary! i don't have secrets, not ones worth knowing!
so here i am going on with myself listening to music, 4 years later... reflecting. what have i done with myself, where am i today?

so i was asked by someone to re-do my "to do list" and so i thought instead of doing a list, (they aren't my style, i never actually do them), i'm writing a paragraph on what i want. to do lists don't work with me, i have to WANT to do something for it to be done.. not be told. i want to not let four more years go by and for me to sit here and think, what did i do then?
that's where i am now, i'm looking back on the past 4 years thinking what have i done with myself, what have i seen and what have i heard?
So here is my paragraph of wants...

i want to tell people things that they probably didn't already know about me. i want to chat to people and know what they know and talk to them about what has happened in there life and what they like and don't like. i want to know more. i want to write. i want to jot down things i find interesting, i want to remember everything because my memory is so bad it's awful. i want to not make new friends, i'm content with the people i have. i want to continue finding myself. i want to continue to cry at films that make me feel sad or really REALLY happy. i don't want to buy a house, i want to rent one. i want to never be certain, just sure. i want to not go out in the freezing cold on boozy nights out, or just nights out all together. i want to get really tipsy in my pyjamas in the warmth at home with people that make me smile and laugh. i want to never like nandos. i want to be with you for the rest of my days. i want to take pictures and giggle at silly things. i want to have private jokes and meanings with people that have the people 'in the know' in stitches at the thought while everyone else has no idea. i want to be funny :'). i want to not plan. i want to try new stuff. i want to try food i have never tasted and spit it out very ladylike into a tissue when i don't like it. i want to hold hands, i never hold hands :/. i want to go to places that are pointless places but they're places i've been! i want to sing really badly and enjoy every minute. i want to pretend that when i play your guitar, i'm MINT. i want to finish this story and not just let it be another idea. i want to eat tea at my granma and grandads. i want to know why my granma likes the term 'grandma' spelt, granma. i want to get so many sweeties. i want to have my own sweet shop or little coffee shop. i want to go for car rides in the sun. i want to go to uppermill, i like uppermill. i want to think of that place that i said, "I WANT TO GO THERE!!" and then go there, (can you remember arran?) i want to cut down on sweets..... hahahaha i'm kidding. i want to go through my i-tunes and delete some of the rubbish i have on there! i want to stop being a horder with stupid stuff. i want to get a new tattoo. i want to know what it is first. i want to hit some drums really hard! i want to buy the weirdest thing selfridges sell. i want to buy some actual food from selfridges. i want to get some new glasses, i need my eyes testing again first. i want to get my eyes tested again. i want to take alfie swimming! i want to take roxie for a walk in the sunshine. i want my mama & papa to be the happiest people alive, they deserve it more than most. i want to paint my toe nails. i want to remember to tell arran to learn ed sheerhans song, "kiss me", i like it! i want to tell everyone to watch a film called, 'the vow', i cried! i want to tell people that the book, wife 22, is very good! i want to look after the unicorn i have adopted on my i-phone app. i want to keep my peter pan side. i want to draw something and pretend it's as good as something jack smith would draw. i want to have such a hot bath when i get home. i want to have a snuggle off roxie :(, i miss you! i want to tell my little sister to stop growing up, you're supposed to be my little sister and you're a young woman already... when did this happen?! i want to tell chelsey that i accept that she has a girl crush on me, it's mutual. i want this date night with my boy, my bruv and his gorgeous lady. i want florida chicken chips and chicken gravy so much! i want to, want to get back to the gym... :( i do honest. i want another little UK holiday again this year. i want to have cards nights. i want to take more picture, i feel like i said this but i really do! i want to be able to cook some form of meal that is edible. i want to continue this another time.....

thanks for reading if you managed to get through it all.
i know it isn't perfect :)
that's not what i ever want this to be!
take care,
love always, soph xoxo

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hello there

Hello everyone,

I have huge news that i wanted to share!!
My little cousin was born 5 and a half week early on the 9th of April at half three in the afternoon! He is called Alfie Lee Brown and weighed in at 5llb 3oz
He is doing superbly at the moment and i am so very proud of him and my Uncle LeeLee & Auntie Claire.
I have been asked to be his godmother and i feel very privileged! He's going to get spoilt rotten off me and everyone else i'm sure.. but me the most! ;)

Babies seem to be everywhere at the moment! Everyone is having babies, expecting babies or has had babies recently. Crazy! It gets me all sad and happy and jealous all rolled up into one!
I know i won't get a little baba of my own and it's a little bit sad. It just means i get to spoil them rotten and become the favourite person in the world without being peevish and shouting. Keep them while they're being cute and give them back at the end of the day ;) Like i said he is doing brill now and is a little chubby cherub! He visited me here in costa del pearce on Wednesday night, which was lovely of him!

Shameless plug for those of you who are still yet to sponsor my best friend Chelsey Thackeray who is running the 10k Manchester marathon on the 20th of May for the CF Trust! Please sponsor as much or as little as possible. You can sponsor online by going to

Alternatively, you guys can also sponsor her by texting: CHEL77 & the amount you'd like to donate (£1,2,3,4,5,10). To: 70070 Thank you all in advance and a huge thank you to those of you who have sponsored already.. it means the world to me and DOES make a huge difference.

I suppose it is about time i got back into doing these here blogs? I just don't feel like i have much to tell you all. Back when i did these religiously, i was in school and had things going on and people around me that i could get inspiration from.. these days i'm in what feels like a tedious bubble. A never-ending circle of the same things day in, day out. Same old, same old. I'm hope this isn't me sounding miserable, please don't take it that way! I'm just reflecting and thought i'd share this reflection with you.

My lung functions are good at the moment, really good actually. My weight is finally in the middle of the 'healthy' range in the BMI chart and it's sticking there. I'm happy with how my weight is and that is so lovely to feel that. I still hate my chicken legs and scrawny arms but i worked hard to put over 10kg on over the past year. Having the PEG tube fitted was definatly the big break i needed. Since then i have gone from 47kg to a healthy 59kg-60kg. BRILLIANT!!

I'm still not being referred over to the transplant team so that's always a plus! At the moment i seem to be going 5-7 week at home and then i need to come in for a 2-3 week course of IV's. That seems to be my 'norm' for the time being. I'm really keeping my fingers crossed that once we're out of the dreary winter/spring/MISERABLE season, with summer round the corner, all these virus's that seem to be attaching themselves to me shall evaporate and i can live my life a little hospital free for a while. Wishful thinking and all that! I've been brilliant with my meds & nebs and i even joined the gym and go there at least three times a week. I started swimming too and i'm loving every minute of that. I go to the gym with my oxygen and just sit on the bike with my headphones in, it's very cool. I feel proper posh ;)

Abit of sad news now... I lost another beautiful friend of mine this hospital admission and again it came as a shock. As silly as it sounds, even though i knew how poorly she was it was still a slap across the face and a little chip on my heart. I spoke to her on the Monday and she told me she was doing better and was on the mend, so to hear the news on the Wednesday was horrible. I've thought about it though and as sad as it is, i am happy in the full knowledge she was content, peaceful and pain free. It wasn't supposed to be like that though, she was supposed to get put on the transplant list at the end of this month and her chance was going to come along and everything would be perfect for her. Sometimes, i guess life decides that's not what it wants to happen and the chances and things that could have been, never are.

No more pain, No more struggle and No more fight. Breathe now beautiful girl. Laugh so hard your tummy hurts and don't even let that stop you! You have a wicked sense of humour that has had me in stitches on a number of occasions! You were beautiful in life and shall eternally be so as an angel now! <3 <3 <3

Going to leave it there....

love you all beautiful people xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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you are cute.

Yo Homies!

So I’m back and still not too happy with what is going on with the website so it’s going to be under reconstruction but still up and running so you’ll all have to bear with me.
I love the layout right now as it’s perfect for a work in progress!

So this is a little blog that I wanna write down after feeling so much negativity coming from the ladies as of late! Come on girls.. pull yourselves together!
So a few of my friends have been battling everyone’s enemy within themselves… there self-esteem!!
We all have it. It lies there and it digs away at us all from time to time on a daily basis, even you guys out there, you all know this feeling!
Truth is, as bangin’ as you all are, you’re never going to see what others see. You look in the mirror and you’ll never be exstatic with what you see staring back.
Never fully satisfied with the reflection!
Nothing I say is going to really change this but I am wanting to do this blog anyway for a certain someone out there who I feel needs a little boost.
It goes out to all of us really who just need some extra sugar in our tea today, so to say ;)

You are so very beautiful in every way imaginable.. you’re smile brightens everyone’s day whom has the pleasure of seeing it. You’re absolutely stunning and the thing that changes that into something beautiful, is that you don’t even realise it do you?
You make everything seem like it is going to be okay. As if you’re in this world that is full of good with no evil.
I mean you have your moments ;) ..... but don’t we all?
You seem to crave to lose those pounds that don’t matter to anyone because nobody else sees them.
You can’t ever make yourself happy with what you see, ever! Fighting a losing battle with that one and in the meantime you’re bringing yourself crashing down.
A few things I have picked up on and they’re not healthy for you. You need to stop that don’t you?
I understand wanting to stay healthy and toned but there is no ‘FAT’ that needs losing! These love handles you speak of? They’re your hip bones, they’re supposed to be there! :)
Those boobies you love so dearly will soon dwindle down if you keep hitting the gym as hard as you have been doing as of late!
You are absolutely perfect to the people who matter.
Beautiful girl.. you need to look in the mirror and instead of seeing all things that need ‘improving’
you need to start seeing things that are special and are bangin’ ;)

Wear something that you LOVE and just wear some sprinkle of confidence!

YOU ARE PERRRRRFECT TO ME! Remember that!! <3

you are cute.
love & peace dudes….

Byeeeeeeeeeeeeeeeeee <3
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