so christmas was beautiful and lovely even if i was feeling a little poopier than i would have liked but HEY.. it wouldn't be christmas if i was well and feeling great :')
i was very spoiled yet again, got tons of cute little bits of chelsey & arran, we did shoe boxes for each other and filled them with cute things that were significant to us. the thought that was put into them was amazing.
my little car got spoilt off my mama & papa and she is now fully decked out fairy style ;D
she shall also be getting a hands free kit installed at some point in the new year.
i also got very spoilt indeed of my mama & papa.. i got tickets to go see phantom of the opera next year... can't express how excited i am, i really can't. i love phantom of the opera and LOVE musicals. i saw chicago in 2010 with my papa in the west end and it was amazing. chicago has always been my favourite but i feel like phantom of the opera is going to be very special indeed.
i got tons of jimjams & which is brilliant for me as i practically live in them. i quite possibly have more pyjama's and onesie's than i do clothes. i got a few new clothes, new perfume, new make-up & hair things, new pamper stuff and money! spent christmas late morning with my nana and my dad's side of the family and then had a lovely christmas dinner at home (courtesy of mama) with my mum, dad, beth and roxie. had a christmas late afternoon with arran and then spent christmas evening with my mum's side of the family at my grandma's. PERFECT & TRADITIONAL.. for me & i have a crackin' photo of me and my grandad on christmas night and he is dressed in my mum's moo-cow onesie :')
might just pop that little belter' up at the end of this post if you're lucky!

i haven't been too brill as you probably gathered earlier on in the post. i'm never well on christmas.. EVER! i haven't been too bad, however, i think perseverance, stubbornness & optimism have pulled me through the brunt of it! i had my clinic last wednesday (day after my previous post) and it went well. lung functions were up and my weight was good :) i was feeling a little viral but was told to continue with the orals as i'd only had a couple of days on them and to see how i got on, i was given the very unexpected all clear and an appointment in an even more unexpected 4 week. anyway, i carried on and left. the day after i felt horrid and was coughing tons of gunk up! determined that it was the orals working and getting stuff on the move and out! i stepped up my physio and even resorted to my mum doing the old paediatric percussion (patting) technique for a few days inbetween. things settled as my orals obviously made impact and i started to improve. i knew i had lost weight but had stopped my feeds due to excessive mucus and sputum in the mornings making me heave and gag, i knew it'd be a waste of time and unbelievably unpleasant for me to have to throw it all back up each morning during physio so i just left it out until it settled. i missed a few days but i am back on it now as my chest is better.. it's just not great though. i still have a week's worth of orals left so hoping they'll budge things down even more. usually i'm on my peach, rolling over needing IV's when my chest goes bad but i seem to be defeating this all by myself with the help of extra physio and orals. hopefully i'll start to improve some more as i seem to have base lined at a point that isn't my usual. i'm not getting worse but still not any better, we shall see what the final week of orals bring anyway :)

i hope you all had a brilliant christmas with families and friends and loved ones <3 i had a little moment on christmas eve where i remembered those who didn't make it to christmas this year and i felt really privileged and lucky to have my family, my roxie, my arran and my chels <3 <3 <3 <3

this year like every other year has soon flown by, i feel like they go faster and faster each year.. which is silly because they quite clearly don't :') not really.
2011 has been a good year i guess, bad thing & good things.
enjoy NYE and be safe!!! :)

take care, soph xoxo

here are some photos that sum up my 2011 as best as i could :') .........



ROSE OFF MARK OWEN (take that concert) :









View Post

merry christmas everyone!


i have clinic tomorrow (Wednesday 20.12.2011) but wanted to give a quick update, spread some christmas cheer and give everyone a wave before i go.
i'm also very privileged to be playing 'santas little helper' tomorrow on ward 85 at the children’s ward. we held a huge charity event earlier on in the year and we have spread the money out between 4 things.
• One was the 'Cystic Fibrosis Trust' - A charity which uses the funds raised to be put to research for CF
• Two was to the 'Starlight Children Foundation' - a charity that grants wishes for children with life threatening illnesses.
• Three was to Thomas - a local charity for a lovely young boy named Thomas Lees
• And finally, we decided to take £500 of the money we raised and buy loads of toys and DVDs for the children on ward 85 which is the ward i used to go on in the Royal Manchester Children’s Hospital.

Cystic Fibrosis patients spend allot of time in hospital and it's not just for a few days and a couple of nights, it can be up to 2-3 weeks and sometimes even longer. this christmas we wanted to put a smile on their faces for those of them who won't be making it home for christmas this year.
we are taking those presents tomorrow before my clinic appointment so i am SOOO excited it's unreal. can't wait to say hi to my old team and nurses and to be the barer of gifts for all the children on ward 85. here is a piccie of all the presents in the shopping trolley...

well this year is coming to a close very quickly :)
however, first of all..
"It's the most wonderful time of the year...."
ITS CHRISTMAS :) :) :) :) :)
.... well, nearly.
it's close enough. i think everyone says this every year, but i feel like this year has shot by. it really has.
going to have a quick re-cap of the year at some point before 2012 arrives. i like to do that you see, just so i can look back and remember certain things that each year brought.
there have been some really sad times and then some really good times this year... but first...

'the best way to spread christmas cheer is to sing it out loud for all to hear' - Buddy from 'Elf'

that is one of my favourite christmas songs :)
i feel like the oldies get forgotten about and replaced with the like of 'Slade' and 'Wizard'
Slade's, “Merry Christmas Everybody” is one of my favourites too but thought i'd share some love to the real christmas songs.
i hope you all have a wonderful christmas with your families or friends. i really do.
lastly, i'm going to leave you with a beautiful poem someone had posted on a friend of mine's wall. personally i'm not a religious person atall but i truly feel like this is beautiful. i think it is a perfect and lovely ending to this post.
Merry Christmas to you all reading this.... make it a good one.
Thanks for reading,
Soph xoxo

"My First Christmas in heaven.
I see the countless Christmas Trees around the world below,
with tiny lights, like heaven’s stars, reflecting on the snow.
The sight is so spectacular, please wipe away that tear,
for I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear,
but the sounds of music can’t compare with the Christmas choir up here.
I have no words to tell you, the joy their voices bring,
for it is beyond description, to hear the angels sing.
I know how much you miss me.
I see the pain inside your heart,
but I am not so far away.
We really aren’t apart.
So be happy for me dear ones.
You know I hold you dear,
and be glad I’m spending Christmas, with Jesus Christ this year.
I send you each a special gift, from my heavenly home above.
I send you each a memory of, my undying love.
After all “Love” is the gift, more precious than pure gold.
It was always most important in the stories Jesus told.
Please love and keep each other, as my Father said to do,
for I can’t count the blessing or love he has for each of you.
So, have a Merry Christmas and wipe away that tear.
Remember, I’m spending Christmas, with Jesus Christ this year."
View Post

hi i'm sophie and i have CF

hello there :)

i haven't felt myself over the past couple of days.. just abit offish and not so happy, smiles, rainbows and sunshine. me being female isn't contributing to this rapid change of mood at this particular time of the month, may i add, but i just can't snap myself out of it.
it has gotten me thinking about so many things though. things i'd like to just get all out of my head and off my chest.. if that's okay?

i've decided i am going to chat to my doctors about transplant and the whole procedure. i just want to know the ins & outs fully so i don't feel like such a rabbit caught in headlights when the topic is eventually at the forefront of conversation with regards to my health.

for me personally, i don't feel like i am ready to have the ball rolling for assessment etc. i don't know whether that's one of these three things; i don't know if thats me being in denial or i don't know if that's me coping with how things are now and not really knowing any different than how life feels right now or i don't know if i am just right and it isn't my time to be going down that road yet.

the dreaded 'T' word has been mentioned before when i was transferred to the adults from paediatrics, however, after improving slightly.. it's been placed on the back burner as my wishes were to see how things go.
time has gone by and every so often my team leave little hints for me to think about it. they never really say it as such but i pick up on things they say every so often and maybe it's just me but i get the impression they're feeling it's not gonna be too far away this side street i need to head down for transplant assessment. i have always been told by each member of the team that they would never pressure me and that they're always there for if i need them. i feel like this is there way of telling me, i need to talk to them about it?
Obviously, i could seriously be barking up the wrong tree but i guess it's worth asking about?
my lung functions drift from high 20's-to mid 30's (percentage wise) and the highest they've been for the past year or two was (one random miracle) of 38%! that was a while ago now.. i'm slowly putting weight on, but even that is like a sea-saw depending on my health. going off quality of life, i know it could be a hell of a lot worse but i am talking about me so in comparison to how things were around two years ago, i start to notice just how big a decline things have took.
i no longer manage college so i am at home every day with my dog roxie, i come in hospital for IV's every 5-7 week for a 2-3 week course of strong antibiotics, i sleep on 8 litres of 28% oxygen every night, i use the NIV for airway clearance to keep my Co2 gas level from rising and when it does i then have to sleep on the NIV (a non-invasive ventilation system), i manage 5-10 minutes (depending on how my chest feels) on the exercise bike at level 1 using 8 litres of 28% oxygen, i have 2000 calories poured into me via a mic-key button gastronomy tube in my stomach over night to keep my weight stable, i often get viral's & infections that seem to batter my tired little airbags these days, i use a wheelchair to get round big places such as the trafford centre and sometimes if i'm not feeling so good i may take a portable oxygen cylinder out with me just incase i happen to need them for relief.
to some who may have things miles worse than i do, i am in no way complaining and 'bragging' about how 'sucky my poor life' is.
i am just confused as to when i am supposed to think the time is right for transplant?
if i am the one who has to approach my team about the whole thing?
do i wait for them to come to me?
do i feel ready to go through with it all yet if it's what they think is best?
so many questions i have thought about.. so they only way i'm going to know is to ask right?
i could be told i am in no position to be assessed as i'm too healthy yet.. i admit things are doing okay but i'm not going to lie. the tediousness of my life is starting to drag me to the point of tearing my hair out.

i have no motivation & inspiration to be aspiring to.. i am simply getting poorly, to get better, to get poorly, to get better, to get poorly, to get better and that's what my whole life and everyone around me lives revolve around and it sucks knowing i'm the reason there life has to be put on hold every so often because i'm back in wythenshawe hospital. it sucks being a little bitter about friends who have the energy, time and freedom to go out and have a ball and LIVE.
is it possible to be engulfed in a disease? to be totally controlled by it?
i don't want to come across like i'm feeling sorry for myself because my life is awesome... the people in my life are my reason for smiling and being happy and positive on life. i couldn't want or need anything more than i've got but a little more better health would be welcomed nicely.

i know this is my rant over for a really long time but i've felt really gutted this past two month with my health and just needed to express this in the way i know best. i'm crap at talking because i don't get my point across in the right way and i can't really explain what i mean and feel, so decided to blog it instead. might not even post this but then again.. this is what you guys subscribe and want to learn and hear and try to understand i guess?

just want to tell my mama, papa, beth, chels and arran that i love you all with everything i have to offer and i might not ever say it out loud often enough but THANKYOU for everything you all do individually or all together. THANKYOU for putting your own lives on hold alongside me when i happen to go on my holidays to costa del wythenshawe or just when i'm not feeling so good. i'm sorry i am such a pain in your behinds at times and i don't ever take you's for granted, i know how lucky i am to have each of you. mama, papa & beth you don't have a choice but to put up with me and care for me and love me <3
Arran & chels you guys just decided one day that i could count on you and rely on you to stick by me and look after me and love me! :) <3

soppy stuff over, i feel better already and know this slump is gonna be hitting the road as well as this viral infection :')

take care guys.. thanks for reading.
soph xoxo

View Post

down low and up high

hello :)

just gonna get straight back into it and let you all know that the beginning is going to sound like abit of a rant and then the end will be some good news.. i promise. i just need to vent.

okay so i had an admission around 4 week ago and things were going okay actually, i had my peg tube changed to a button now which i feel alot more comfortable with. it wasn't simple getting it in but we got there in the end.. let's just say my gag reflex is disgraceful and a camera down the throat simply does not go down well with, whether i be sedated or not. i couldn't even manage to pass a NG feeding tube :(

anyhoo.. like i said, got there in the end.

so after three weeks of IV's i was discharged with my lung functions up, peg-to-button procedure successful and weight up as well as my infection level nice and low. i was still a little productive but numbers were up so i just went home.

the first week wasn't too bad and i was doing everything exactly as planned, taking all meds, all nebs, all feeds, doing physio etc and then i had my flu jab....

well things changed, be it coincidence or be it an underlying viral?
i started becoming more productive, i was up coughing during the night, i was achey and felt freezing cold. i left it over the weekend to make sure it wasn't just a side effect of the flu jab which usually takes a couple of days to go through my system but by monday morning i was a little worse so i called my cf nurses. they sent me a two week course of orals and i was placed on 500mg of azithromycin and 750mg of rifampcin.. just had to wait for my GP and chemist now.

as the week went on, i was no better and my appetite was slipping, it was taking close to all morning just to clear myself and feel close to actually wanting to start my day.

four days later, chelsey came round my house and i was still upstairs doing physio this particular morning, as i was feeling crap and unable to talk through coughing and catching my breath, she rang my GP surgery. the secretary insisted the prescription hadnt even been faxed, a little while later she suddenly recalled seeing it and sending it off to the pharmacy, we were advised to give them a call.

so chels did.

on speaking to a women at the chemist, they hadnt recieved my prescription.. so we called my GP surgery again! the rather 'snotty' and unprofessional secretary informed us that it had been sent to the chemist to which chels said she'd just spoken to someone and they hadnt recieved a thing for me; the secretary then changed the story and informed us that it was in a box infront of her awaiting to picked up by someone from the pharmacy along with others.

finally we got somewhere, after my mum calling all week and chels having to ring round oldham to find this prescription that apparently at the start of the morning hadnt even been faxed over from the CF centre, to suddenly being at the chemist and now being in a box on the desk at the GP surgery.

me and chels went down there ourselves and took it to the chemist to try and get me started on some orals.

that weekend i stepped on the scales and after the high of finally reaching my GOAL weight after nearly 2 years.. i was completly disheartned and dissapointed to see i'd lost weight and was back down to below my goal of over 9 stone. i felt like all my hard work was for nothing, had been thrown back in my face as i was catapulted back to square one again. i was doing everything i was supposed to and just 1 week after having 3 weeks worth of IV's i was right back where i started.

totally fed up was an understatement.

i suppose it can feel extremly tedious the ups and downs of CF. i've always known that but sometimes it's a little more prominent than others. this time round i feel like i have took 2 steps forward and 5 steps back. i'm hard on myself, i know i am but this is all i have my life revolving round at the moment, it takes over EVERYTHING.

i needed to snap myself out of the slump so i went to knowsley safari park with my bestest friend chelsey .we had a good chat and we got talking about transplants. we decided to make a little plan up of what i'd do post transplant (note: we were talking about if i need one, if i HOPEFULLY get one and also if i HOPEFULLY have a successful one)

i always thought i'd go to college and uni and get a great job and then things took a turn for the worse and as you all know i had to drop college and stay at home as it was getting too much, when me and chels were talking, i realised that if i had the very lucky chance to have a second go at things post transplant, i'd get a part-time job in a cute little sweetie shop and the rest of the time i would LIVE and LOVE every second of the life i would be living :)

it sounds absolutly perfect.

that following wednesday was a VERY important day, it was the day of my driving test and i am very pleased to inform you all tha.....

so here is where i stand right now, i have passed my practical driving test, i am better than i was when i started orals but i am back in costa del wythenshawe now on IV's so hopefully, i can try and fix myself a little. whilst i am being fixed, my motability car will be being made, wanna know what it is?...


just like i have always wanted :D

its all very exciting.

well this is just a little update for you all while i did my physio. it's bedtime now for me though.

goodnight... thanks for having a read,

Take care, Sophie xoxo
View Post

this blog was looking dusty...

Ola amigos!

I know, i know i am totally rubbish and i have quite possibly lost most of my readers by not blogging and simply disappearing off the face of the earth however, the fact of the matter is . . . . i don’t want to become the boring diary blogger that is telling you what i have done with my day instead of writing a blog that is (so i'm told) a 'good read'
I finally managed to get my blog looking just how i wanted it after all day of stressing and getting very irate! I shall stop rambling on with myself and get on with the blog :)

Well i have a few things i have up my sleeve but didn’t want to bombard you with a tearjerker or a huge “IN YO’ FACE” opinionated blog so thought i’d take an inspiration from an old blog from the 24th of April 2009.
Now i had two ideas. . . one was to copy a link to this post so you could have a read of the old one and get the drift of what i’d be writing today’s blog on and the other was to copy and paste the whole blog into this post and in a different font, add some refreshed things as a ‘how i see things now’ and compare the two together. . . this failed miserably so instead i am going to go back to plan A and give you the link so you can come back to this point and read my comparisons now we are in the future!
Once you have followed the link and read the blog, come back here and we can continue with today’s instalment!


*** BACK TO 24/04/2009 *** <---- click there to see the blog from April 24th 2009!

HI . . . . welcome back to the future!!

I’m now going to take little snippets out from that blog and comment on things that had a pretty big impact on me when i was reading through the old blog.

“It’s weird to know that i have only a couple months left in school and then i’ll no longer be a school kid. The weirdest part will be, not seeing everyone every day. My best friends, the group of lads that hang around with us. The people i have known since nursery. I’ve spent most of my life with the majority of those people.
That’s all coming to an end and i more than likely will hardly ever see them anymore. It’s kind of sad really.”

Well i remember thinking it was going to be dreadfully unbearable that i was going to lose contact with people but it kind of happened and i had alot of stuff i had to deal with that brought my attention off losing friends. It did happen and i only talk to two people from school regularly and one of them happens to be my boyfriend so not sure if he counts or not :D haha!
Either way, i guess i was a little bitter when i read this, it made me think to that point in time where my friendships and bonds with the girls & guys was a real close one . . . is it selfish of me to feel a little resentful that they all seem to have just gone?
After a while, i had alot of stuff i had to deal with that brought my attention off losing friends and focused on health issues which is still my main focus at the moment. . . i guess part of me still longs to be as normal as i seem back then? :/

“Cystic Fibrosis is a disease that doesn’t get better it gradually gets worse. This is something i am thinking about more.
I know that i am nowhere near as bad as some people with CF, my lung functions are on the up and at the minute i’m not doing too bad. The thing is though, who knows what it might be like two years from now. Swing and roundabouts right? Good times and bad times?
My CF might be unpredictable but i won’t let it walk all over me and i certainly won’t back down and let it prevent me from achieving what i hope to do.”

It’s this one that stings the hardest. I have bit the bullet and copy & pasted this one, i wanted to leave it and keep this one to myself but what’s the point in writing this blog if i don’t put my heart into it?
Well how right was i?
Two years down the line and things did go a little sour as far as health is concerned. We all know that it was 2010 when i really went downhill but things are more stable now and even though i am nowhere near the health i was at the time of the old blog. . . i am far better than i was this time last year and i’m proud of myself for achieving that!
This is Cystic Fibrosis, it is very unpredictable and i have deteriorated as expected. Now i’m not lying to you all and saying i have been perfect and took ALL meds and gone in the gym EVERYDAY religiously but who’s perfect?
My CF team are brilliant and they know everything that goes on with me. I’m at a place which is really good right now. Using NIV as airway clearance, PEG feeding overnight to maintain weight, exercising more frequently and i even have less nebs so it’s easier to maintain and handle!
I don’t feel like CF rules my life as much, it just tries a little harder but i am still fighting on, i don’t doubt that for one second!

Next up is the 20 years from now list that i wrote 2 and a half years ago.. things have changed and some have been done and dusted so i’m going to go through each of them and add a comment as to whether it’s still something i want to achieve or not.
The ones i want to still achieve shall be in red, the ones i have acheived shall be in green and the ones i no longer shall be blue. Things change all the time and i am not as ‘heads in the clouds’ as i was back then, a little more realistic i guess you could say? ;)

• I want to have got good grades at college and uni – One Day!
• I want to be doing something i love and enjoying my job - <3
• I want to be in good health (hopefully) – ALWAYS!
• I hope to have made it in the writing industry – ALWAYS!!
• If i’m not a writer i want to be a child psychologist – ALWAYS a writer. . . if not, interior design!
• I want to have my own house – One day!
• I want to be in a good relationship or even possibly married – Always <3
• I don’t want kids just yet – Not for me i don’t think.
• I want to be extremely happy - ALWAYS
• I want to have been to New York, LA or Australia – One day!
• I want to have a car named Betty : ) - One day i shall have a black mini named betty but for now, Val does the job just fine <3
• I want to still be writing my blogs – maybe not every day but still going ;)
• I want to have a dog – 09/07/2010 My Roxie Puppy came into my life <3
• I want to be able to bake a yummy cake - ONE DAY!
• I want to be able to make my grandma’s chicken soup and my mum’s sheppard’s pie – Too yummy!
• I want to own a piano – Still and shall always be my favourite instrument
• I want to be good at playing the piano -Not my forte
• I want to have learnt Italian ... i love that language for some unknown reason – 18th birthday prezzie off my cousin’s chrissy & lyndsey! :D
• I want to still be writing music. – Again, not my forte . . . however check the link i give you at the bottom of my page and have a wee listen to a very talented guy i happen to know!
• I want to have seen Beyonce live in concert. – AMAZING!
• I want to have gone on a big holiday to Florida with a big group of friends and family. – One day!
• I want to have gone on a cruise. – One day!
• I want to still be in touch with at least more or less all of my school friends or at the very least know what everyone has achieved – DREAM OVER! :’)
• I want to be as close to my mum and dad as i am now - ALWAYS
• I want to still be going to my nana wheeler’s flat on a Saturday : ) – Just not possible to continue this when i spend so much time in & out of hospital! Every Saturday is definatly out of the picture! :(

Thanks for reading!
Here is a video of the talented guy i was talking about. . .

If you’re interested to hear some more. . . here is a link to his youtube page
MR ARRAN BARNES . . . share the love people! ENJOY GUYS!!

Take Care, Soph xoxo
View Post

onwards & upwards!

Hi everyone,

Okay i'd just like to say that i'm writing this on my new blogger app on my phone. Therefore, if there are any typo's.. i do apologise (uncle neil)
Before i begin, I've had a special request to spread the love to all my lovely blog readers from my best friend in the world.. Miss Chelsey Thackeray! <3

It's been a really tough couple of weeks. Quite possibly some of the worst weeks this year so far. In the space of two weeks, i've lost a very dear friend, heard that an old friend got the life saving transplant she needed badly at just 16 and then devastatingly watched, heard and greived a close friends death.

Andy Ashworth battled his fight with cancer till the very end! He proved them wrong time and time again by bouncing back and fighting tooth & nail.. he managed to renew his wedding vows to his lovely wife lisa, he went to a couple of matches of his favourite football team and he spent as much time as possible with his gorgeous sons, Curtis & Gaz.
He used to say that i was his inspiration! A grown man who battled from his diagnosis to the end of his life.
Funny really because he is a huge impact in me motivated to conforming with treatments, doing physio, working hard and enjoying life!
Your wife and two sons are doing you proud with both there bravery & stregnth. Thank you Andy for everything you did for me & all the little chats and conversations we had.. i hope your getting the well deserved rest up there Mr Ash <3
I was unable to make it to his funeral due to being in hospital but i understand it was an amazing send off for an amazing man! He shall forever be remembered! Sweet dreams Andy Ash <3

I heard soon after that an old friend from the childrens hospital had recieved her double lung transplant. She had it in Great Ormand Street Childrens Hospital. The day before her 16th birthday she had the life saving op! It was successful but she hasn't had it easy. A few complications have set her back abit but things are finally picking up for her and of course she is still smiling & happy. I'm glad she got her call.. she is one of the lucky ones. Shouldn't be a case of luck though i believe.
Anyway, i wish Alethea a very speedy recovery and hope there are no more hiccups along the way. She'll soon be chasing that gorgeous little sister of hers around and that makes me overwhelmingly happy!
She is 16 and will now get her life handed back to her after it cruelly being put on hold.
Good luck Miss Petrides!! You can do this beautiful girl <3

So this leads me to the biggest shock, impact and emotion filled part of the blog.
My friend Laura Varey lost her life last Friday. It was stolen from her.
21 years old and she's just gone.. it's heartbreaking.
Laura was my first friend on the adult CF ward here in wythenshawe. She saw my name on the door, had a nosey in whilst on a walk with physio, then waved and added me on facebook. She helped me settle in on this new ward. Helped me feel less alone as a youngster surrounded by older patients. Was a fellow 'kid' (her words not mine!)
She was 21, so mature; yet so young and fun at heart!
When i was transferred over to the adult centre, my health was deteriorating and fast! They were considering refferal to the transplant team and so i underwent the full transplant MOT! It's filled with every test you could possibly think of!!
I was thrown in at the deep end with a tank filled with sharks and other sea creatures.. you all know i have the biggest fear of sea creatures! I'm simply metaphorically speaking but you all get my drift?!
I was utterly and totally in out of my depth and scared. I was scared.
Laura helped make me understand and come to terms with everything having recently been placed on the list herself. I was so thankful to have someone understand and know exactly how & what i was both thinking and feeling. She too was young and was also wanting to be able to focus on her life away from CF, but unfortunatly had no choice but to concentrate on her health for the moment in time.
I quickly formed a close bond with Laura Varey and found myself talking to her all the time via facebook. I'd wave at her across the corridor or she'd wave at me as she went past my door in her wheelchair and panda woollyhat! :')
After getting really ill near christmas with a nasty virus, laura found herself facing the hardest months in her life. Her whole energy was thrown into battling and fighting the disease that was overtaking. Cystic Fibrosis can be so cruel!
A friend of ours passed away in February, her name was Holly Morgan and although i talked alot to Holly.. Laura was closer to her. I imagine it broke her heart when she died. I remember being at home when i heard about Holly and trying to imagine what that must've been like for Laura, I mean, she was on the same ward and more than likely simply across the corridor from her. I had no idea i'd be finding that out for myself.

I found myself getting a little closer to Laura after that. I also realised i was a little more conciencious about her health. Constantly checking in on how she was and forever wishing her call would come.

This admission, i came in and quickly figured Laura wasn't very good atall. Her family, friends & fiancè were around all the time (more than usual), she was never on facebook and there was generally a horrid atmosphere on the ward. It got worse as days went by and when i went for a walk i saw her door was open so waved at her as she waved at me! :)
I was happy to have seen her and for her to look content and as close to being well as i thought she could be. That was the last time i saw her.
Days went by and her family and fiancé were here constantly! The atmosphere was close to being unbearable now and i was told that Laura had requested i be told what was happening. She'd been told she was too ill for transplantation and that there was nothing they could do for her anymore.
I was so devastated.. more so for her & her family & fiancé. Selfishly, i was gutted for me to.. i was losing another friend.
My first friend who had helped me so much and the only friend i had left on here.
She battled on and fought till she could fight no-more. Her room was filled with so much love. I'm told she was content, happy and that she had accepted everything. So like Laura to be so gracious and brave.
Her battle was over on Friday.. the day was filled with tears, love, laughs, cuddles and snuggles all for Laura. The nurses were feeling just as devastated as i was and so we kept each other going with laughs & cuddles all day! Just what laura would have loved!
Saturday i wrote her a letter, stuck it on a helium filled balloon and let it fly away up to the sky where she rests now.
I hope she got it and had a good laugh at the stories i wrote :)
Sweet dreams dolly!
Forever missed and never.. EVER forgotten matey <3

I have lost two friends from the ward now. The only friends I had made and i found that hard but i'm accepting that now. They've both become my inspiration and motivation :-
To LIVE & LOVE every single second of life.
To fill the time i have in this world with the things i love and the people i love.
To do things i want to do because i want to do them.
Finally, To stop doing things to please everybody else because i need to squeeze everything i possibly can out of this life.
It really is too short and there is no time to loose!

I hope both Holly & Laura can be everyone's motivation to live life and give life?
Time ran out for my two friends but for Alethea.. well she proved it can be done! Her life was saved by an angel who selflessly lived there life and then gave life to somebody else.
What an amazing gift and way to leave your mark in this world?
Join that organ donar register.. please!

All my love and thoughts are with Andy's family and Laura's family <3
There aren't any awards for bravery in this life so i'm hoping they are resting and dreaming sweet dreams in another world.

Love you Andy <3
Love you Laura <3... Miss you mate!

Take Care, sophie xoxo
View Post


Hey :)

My blog has had a makeover! A few people were struggling to read it as it was sending there eyes loopy so I kept changing the font but that did nothing, I realised the font wasn’t really the problem.. the background was so I am hoping that this is better for everyone.
The sun is shining and it looks nice outside for a change, weather has been abit crazy in Oldham over the weekend eh?

This week is CF week! 8th of May-14th of May!

I have a triple dare for you all, I want everyone to ask just one person at work if they know what cystic fibrosis is and if not.. explain it to them in your own terms :)
Go On.. I Dare Ya!

You could also help by getting EVERYONE in your workplace, right there in front of your eyes, to donate some money to The Cystic Fibrosis Trust. No matter how little or large there donation.. it all adds up!
There are tons of ways of doing this but the best way I know which is quite special to me is by going to Natalie Frenchum’s just giving page as she is my best friend’s mum and my second mum :’)
She is doing a parachute jump in Kent on the 11th Of June 2011!
The minimum donation that anyone can make is £2 by going to:-
I’ll also be posting a link to that site on my facebook for those of you who have me as a friend :)

Thank you to those of you who have already donated, it really does mean a massive amount to me, it should do to you too because when they do find the cure to CF. You will have all contributed to that, piece by piece every time I have asked you to out your hands in your pockets, whether that be at a outside charity concert or pestering you all on this here blog!
Thank you but its time you become the pestererer (Keith Lemon for you there) and mither your work pals, they can spare a couple of quid surely.. IT’S CF WEEK!!

Hey, I still dare ya, don’t think I’m forgetting!

I want this post to all stick together with my CF week flow.
I thought today’s blog could be about someone who is very special to me and who always seemed to be there at both the best of times and the worst during my time in the children’s hospital.

There have always been 3 specialised Cystic Fibrosis nurses but Jo was the one who showed that extra dedication, care and compassion. She didn’t just care about the task in hand and as you as a patient, but she cared for you as a person too. A person, who was dealing with all the hospital side of things but was still a teenager with some big dreams in her head!

She never, ever, EVER will forget the first time I saw her.
She was doing my port flush and she was fairly new to the team. She was asking me questions and getting to know me and she asked what I wanted to do when I got older. I, being me, went on with this massive speech about how I change my mind with regards to that more often than I eat sweets and by the time I’d finished telling her when I was 10 I wanted to be a paramedic, when I was 12 an interior designer etc
I had forgotten what the name for the profession I wanted to get into was so I tried to describe it and the best way I could was, “you know, one of those paper ladies!”
She looked a little flabbergasted but kept a straight face and proceeded to tell me I could be one of those now at 14 if I wanted.. so I looked at her quite strange and said, “No you need a few qualifications and degrees and things first!”
Jo looked really confused, as did I so we tried to work out where the confusion was coming from.
My mum came back from the pharmacy as we explained to her what we was talking about and how confused we were. She started laughing..
“She means she wants to be a journalist!”
Jo was in stitches because she thought I meant I wanted to do a paper round. :)
She tells that story to everyone we meet when we are together.. little bugger makes me look real stupid! Haha.

Jo has been like another mum when mine couldn’t be there.
I loved how I felt like I could tell her everything and anything and she’d understand and help and re-assure. She was an amazing listener and a great storyteller too. She was ferociously good at her job though!
I think I was having my port flushed again one time and it was around 6ish so Jo was already working late. She flushed my port but it hurt so much I shouted at her to stop because it hurt, so she took the needle out and inserted it again making sure she’d hit the back plate so it was defiantly in the right place, and began to flush again. “OUCHH!” I shouted.
It stung all across my collarbone and my chest!
She had a feeling that my port had blown and that I would be needing an operation to take it out and have a new one put in but she had to get a radiologist to perform a quick procedure first using some form of dye to see if it had fractures in the line.
The woman who was qualified to do it had gone home so Jo, rang her and I remember her telling this lady that she had to come back to hospital as it was an emergency!
In the end, the lady came back and Jo’s suspicions were right :)
I think Jo probably didn’t get home till 10 that evening!

On my last admission in the children’s hospital, Jo had come up for a chat after work one day because I was on my own. It was around 5pm because we were sat watching come dine with me on channel 4! I was just telling her I was a horrendous cook when I got a pain in my chest when I took a breathe in. It got worse very quickly and was very sharp! I was panting it was that painful to breathe in so she placed oxygen on me as my sats were going low and my heart rate was soaring! She placed the emergency button near my hand just in case before she left the room to try and get hold of the doctors before they left to go home. I had virtually every part of the doctoring team in my room within 5-10 minutes. The 3 consultant CF doctors were discussing what to do in abit of a panic I think. Jo was sat holding my hand and playing with my hair. I remember thinking, “oh my god, this must be bad if Dr Chan, Dr Panicar and Dr Thomas are all here!”
I had an ECG, an x-ray and a CT scan. Everything came back fine though and we never really knew what it was so the doctors said it was a form of trapped air between the chest wall and the lung cavity. All I know was that it was painful and lasted a couple of days before settling down.
Jo stayed for a little bit and then finally went home, LATE again! I bet her husband hated me, haha.

When I left the children’s hospital I bought Jo a me-to-you nurses watch to have on her uniform so she could never ever forget me :)
I still see her now & again when she gets chance to pop by and see me. She wears the watch I got her on her uniform and she even came to two charity do’s last year so I got to see her then too!

She is a very special lady who is strong and courageous. She can and will overcome anything. I miss her and I think of her everyday. She is always in my thoughts and my heart. I hope she feels strong, happy and beautiful because she is the most brave and positive and beautiful lady I know.
I love her <3

View Post

missing pieces?

I’ve not felt myself for a week or so and I haven’t been able to put my finger on it. I’ve kept myself to myself and just sat and pondered and thought about a fair few things.

Things are sinking in.

Realisation has hit me and I’ve only just actually come to terms with everything.. I feel more stable, I have no choice but to accept what’s going on and what is happening but I’m not happy about it and I shall keep fighting it because I’m not just going to give up.

This may sound silly.. a little confusing? Let me explain.

In the duration of me pondering and thinking I have been reflecting and thinking back on the past couple of years and I cant help but be flooded with an overwhelming drowning feeling.

Cystic Fibrosis over the past year and half has really kicked up a whole new level, a level I never expected to be at so soon.

I’ve always known it was an unpredictable disease and that there was no certainty or stability with it. I guess I’ve just been thrown and had to adapt to things so quickly that I haven’t fully absorbed things and I was so consumed in making sure everybody else was comfortable and okay and understanding what was going on, that I neglected to allow myself to adjust.

You see I am the person who pushes things away if they feel like too much, I usher them to the back of my head so that they aren’t seen or heard of and I carry on and then something else comes along and I push it to the back of my head and carry on; then another comes and I do the same, then another and vice versa.

The thing is… it’s just not good for me.

It makes me have more off days than good days where I have to pretend and smile away.

Please don’t get me wrong, I am happy, I am unbelievably happy, I LOVE my life and wouldn’t swap anything in it if it meant that everything changed.

However, i get to a point though where I struggle and think too much and things suddenly crash down because I piled everything too high at the back of my head. Therefore, I decided I needed to have a clear out and I got the time to do that this weekend whilst I was visiting family in Essex. It was quiet and sunny and the perfect place to just think and sort myself out.

I’ve been reading back through my old blogs from 2009, early 2010 and I cant help but feel sad.

I read how I did 30-45 minutes straight on the treadmill with both incline and of high speed without oxygen whilst listening to my ‘play list of the day’
It makes me feel sad knowing that I can just about manage 10 minutes straight on the bike with 8litres of oxygen blowing through my facemask.

I read that I wanted to get good grades in my May from my exam at Oldham sixth form.
It makes me feel abit useless that I couldn’t manage that anymore and makes me feel bitter at the fact that I put all my effort into GCSE’s and arguments with my dad about further education just to have all been a waste.

I read that I’ve been on a walk to town from my house and then back to my friends’ house in Waterhead.
It makes me feel gutted that I wouldn’t dream of walking to my friends house from my house anymore which used to take me 10-15 mins.
It makes me feel angry and sad knowing that I rarely see or speak to that friend anymore as her life is moving on and she’s going to uni this year where as I’m stuck... trapped almost and unable to move onto the next stage like all my friends are.

I’m very bitter about that if I am to be honest with you all.

I feel like I worked harder and put everything I had into schoolwork because I genuinely loved it and I was good at it. I was the nerd who just kept her head down and got on with her work. The girl who was shy and quiet in front of people who weren’t in her group of friends and who stayed away from trouble including simply giggling and talking in class. More than likely, the only person in my year who did her homework the day she was handed it before the school day had finished at 3pm.
All that hard work and dedication just seems to have been not worth it really.

I find myself being such an angry and easily annoyed little soul sometimes.

At things such as; people smoking, kids of 15-16 acting 21-25, people using drugs such as weed, people who think the end of the world is when they’ve had a hard day at college because the tutor kept them behind half an hour!
I make myself laugh because when I am in the mood I am in right now whilst writing this... I think, “LIGHTEN UP! Your 17 not 87!”
However, when I am having a bad day I cant control my temper with them. It gets the better of me and I usually have to try my very best to ignore them.
I feel like I have an old head on young shoulders with regards to my views and opinions on things.

I’m 17, and when I was 16 I was healthy, I was able to go for walks round the ressies, I could go for a walk to town with my boyfriend and walk back to his house, I could go shopping with friends or family and walk around the Trafford centre, I could have my room on the top floor which included two flights of stairs, I could do 30-45 minutes on the treadmill without the need of oxygen, I didn’t use a wheelchair to get around large places, I didn’t need oxygen at home, I didn’t even contemplate or think about the whole transplant scenario, I didn’t think I’d be unable to go to college or having to go in for IV’s every 4-5 week, I didn’t think I’d need to sleep on a ventilator and I didn’t think I’d need to have a PEG fitted to be fed a 500ml bag of 2000 calories worth of feed every night.

Within the space of a year... it’s all changed and I had to change too!
I had to put things on hold and I changed my views and outlook on life too.
I’m not as optimistic as I used to be... I’d say I was just a lot more realistic instead. Things are looking okay for me right now but if the past year has taught me anything it would be not to get so comfy as CF is certainly more unpredictable than I ever expected!

Thanks for reading this little outburst from my head.
Take Care, Soph xoxo

View Post

Day 30

Hello all,

I started writing this blog while roxie slept next to me.

Last Saturday I went to the grand national with a load of family and friends of the family.
I had my picture took at red rum’s statue and at the finishing line.
I went on the grand national track and walked a little bit of it (we took my chair though).
I put a fiver on the horse Oscar Whiskey because it reminded me of my achievemnt in learning the phonetic alphabet :’) …. AND I won £40! :D wooohooo.
It was a great day, everyone enjoyed it and some got burnt as the weather was gorgeous.
Here are a couple of piccies….

Day 30!
It’s here at last… I want to apologise to those of you who are disappointed or feel let down because it’s taken me so long. I’ve not been feeling so bright and shiny chestwise and started on some orals which are just starting to be beneficial.. however, they’ve got some side affects which include feeling nauseous and actually vomiting so ive just not felt up to writing atall the past week. It started out as a tickle that was keeping me up at night and not really having any effect during the day and then it turned productive so i rang the team up on tuesday to get some orals and since then i am gradually improving although it's still early days. I have lost a little bit of weight but only 3 pound which is understandable with me being sick and working so hard both breathing and coughing. My back is acheing so at the moment my extra tablets that i am taking so far are:
Ciprofloxacin (booster antibiotic)
Septrin (booster antibiotic)
Paracetamol (for aches)
and Motilium (for sickness)
Today has been the best day so far. So I decided to write the blog up! Before i get started, i just want to let everyone know that i will be aiming at getting one blog up a week from now on & i'm going to start thinking some ideas up too :)
On with today's picture challenge.. the final one:

Day 30:- A Picture Of You.

It doesn’t tell me what to write here, so I thought I’d give you a low down on Sophie-Soph ;)

Name: Sophie Jayne Wheeler

D.O.B: 09/07/1993

Location: Oldham, England

Fave. Colour: Red, Luminous Green and Midnight blue!

Fave. Sweetie: Green Turtles, blue and white mini dolphins and lips.

Fave. Chocolate: Picnic

Fave. Drink: Irn Bru

Fave. Perfume: Hot by Ralph Lauren.

Fave. Band: Muse

Fave. Item Of Clothing: Sugar Puff Hoodie

Fave. Shoes: Beth’s Ugg Boots!

Fave. TV Show: Celebrity Juice.. ooouuushhhh! <3

Fave. Book: The Host

Worst Habit: Taking Sharp Deep Breaths

Dream House: I don’t care as long as it has two bedrooms, a massive bath and an attic room so I can paint it black.. put stars on the ceiling using tiny lights and fill it with bean-bags, cusions, pillows & duvets! <3

Ideal Job: Writer or Interior Designer

Best Quote: It can always be worse

Take Care, Soph xoxo
View Post

Day 29

Hello everyone,

Today’s blog is the long awaited blog 29! I’m writing this while listening to some music and whilst Roxie sleeps on my bed! Here is a piccie:

Before we get to that let’s have a little catch up shall we?

I’m currently head over heels in love with ‘My Chemical Romance’s song – Sing!’

If you haven’t heard it before, have a listen. Don’t pre-judge it because I said it was a my chemical romance song. It’s not heavy and it’s just some really good & powerful lyrics. I have posted a video with lyrics so you can see the lyrics too.
Let me know what you think in the comment box! :)

I went watching Kylie Minogue in concert last night and the performance she put on was something I have never ever seen before. I don’t want to spoil it for those of you who are going and haven’t yet seen it but it is amazing!
A friend of mine and the family, Mr Tony Kenny and his lovely wife invited me and Chelsey to go and watch it last night and it was great. I was totally in awe at the whole show and how it all came together. It must have took so much rehearsing and also must have cost a bloody fortune to put together. Another thing I can’t help but mention is how gorgeous she looks for her age. She is 43 in May; which isn’t old but bloomin eck’ Kylie looks just a smidgen younger huh?
It was good and I would highly recommend it even for those of you that aren’t fanatics.. I’d guarantee you’ll be amazed at the whole show!

I have my clinic appointment this afternoon at 2:45. I get another couple of weeks out yet but we shall see what they say. I’m feeling fine, I have abit of a tickle at the moment but that’s nothing unusual and I’m not chesty whatsoever. I am still putting weight on, I’ve had no temperatures and my appetite is still excellent. I hope my lung functions are good.
For those of you that don’t know what lung functions are let me explain in my own little way. There shall be no scientific facts, this is just how I see them.


HA! I’m joking but seriously, it isn’t my best friend. They are like your worst enemy at school. You try to avoid them but you can’t not really so when you are confronted by them it turns into some form of competition and you end up practically killing yourself just to try and beat them! Metaphors over and done with. It’s actually this machine that has a long tube attached to it and at the end of the tube there is a filter which is changed after every use to prevent cross infection and then there is a mouthpiece that attaches onto the filter. Once it is all set, you take a deep breath and then you blow out all the air from in your lungs… every last bit of it until there is nothing left inside. Pulling the mouthpiece out of your mouth, you then gasp for breath. It measures how much and how quickly you can move air out of your lungs. Two major things they look out for are the FVC, which is the lung capacity and FEV, which is lung volume.
I hate doing them as I feel so much pressure and there is none really but we all know that the better the numbers are, the better you’re doing health wise. So when it goes down you can’t possibly comprehend just how disappointing that makes me feel about myself. I quiz that maybe it was my technique or the way I was stood or that I didn’t breathe it all the way out or maybe I didn’t take a deep enough breathe. In all honesty, I try my very best each and every time. The pyhsio’s always tell me not to be so hard on myself but how can I not?

Anyway, on with today’s blog:

Day 29:- A Picture That Can Always Make You Smile.

Okay.. so every photo I have within my possession will obviously make me smile, otherwise I wouldn’t have took a photo of it in the first place. One thing I defiantly didn’t want to do within this whole photo challenge was repeat myself all the time by using photos of the same people or same thing so I hope I succeeded in that. This being my reason that Day 29’s photo is a photo my friend & cousin (in-law in to be) Emily Maher sent me one day when I just needed abit of a boost.
It speaks for itself right?

I doubt myself a lot, I have confidence issues both physically and mentally? :/
what I mean by that is I never feel like I am good enough, I suppose we all feel like that sometimes though?
I question everything I do and make sure its okay before I do it. I just hate to make people disappointed or unhappy with me. I can’t stand it! I’d rather somebody be angry with me than upset or disappointed with me. I feel as though I mess a lot of things up most of the time. :’)
I try my best but I guess sometimes that’s not what people are expecting and wanting.
I just love how much drive this gives me!
It makes me feel good and like I am doing things right and somebody does like and enjoy what I do. I feel like I have some support in what I do when I read this :)

Whilst I’m on the subject of support I wanted to thank everyone who reads these little snippets of the crazy, opinionated, overemotional bubble I call my mind. :)
Your comments are much appreciated as I know just who is reading and what they enjoyed reading and sometimes I even find out why. Maybe it’s because they can relate to what I’m saying and I have one person who told me that I helped them because they no longer feel completely alone in how they feel. That was really nice.
I get told I’m inspirational all the time and it utterly mind boggles me how I can be someone’s inspiration… me?!
I don’t do anything to be inspirational, I don’t save lives, I don’t cure deadly diseases and I don’t save the world. I’m just being a 17 year old girl who blogs about her ideas, opinions and daily going-on and happens to have cystic fibrosis, a few hospital visits and a little puppy girl!
I do find it very humbling to be deemed somebody’s inspiration though. It makes me back that fear of being forgotten once I’m gone into a corner because if you’re an inspiration then you’ll forever be with somebody somehow right?
Like a little piece of you stays with them for as long as they live?

So that makes me feel very honoured and that makes me smile knowing I am somebody’s inspiration out there in that big huge world!

Take Care, Soph xoxo
View Post

Day 28

Good evening,

I’ve had a busy day today but before I inform you all of that busy day it’s April now and you know what that means ladies & gents… IT TIME FOR A NEW QUESTION OF THE MONTH!! Wooohoooooo!
If you look to the right of the computer screen and maybe scroll down abit (?) you should see a poll with a question and a choice of answers for you to pick one from. I’d much appreciate if you could inform me of your answer as you did my previous question :)
I am proud to announce that just over a hundred of you replied to my question and 93.33% of you are signed up to be an organ donar whilst 6.67% of you aren’t!
I advise that you visit

This month’s question of a day is just me being curious really. I am wanting to know if you have read all of my blogs or some of them or just the recent ones or if you have read them all right from the beginning?!
Thanks for taking the time to complete it for me! <3 I want to thank everyone who reads my blogs as you have given me the biggest motivation in the world to put so much more effort into writing these as much as possible as I now realise just how many people read these! Infact, I found out this morning by looking at the statistical viewings on my blog that I have people reading them who live in Japan, Australia, America, Germany, Denmark, Canada, Netherlands, Ireland, South Korea, India, France, Philippines and Russia! It completely amazed me as sometimes I doubt whether people other than my family & close friends read these :’) So a massive thank you to taking an interest into what I have to say and the ways in which I choose to express it. I have tons of writing, planning, ideas, meetings and many more things to be getting myself into for the rest of this year all to do with this blog. I got to start scheduling some sort of timetable maybe s I can keep myself organised and stick to it! I want to speak to some people about certain things and see what they think about these plans first of all :) So tomorrow it is going to be mothers day in the UK (3rd of April) I assume that is when everyone will be reading this anyways so I’d like to wish all the mothers of the world.. not just the ones in the UK, a very HAPPY MOTHERS DAY!
Especially to my mama... Mrs Paula Wheeler!
Thank you for everything you do mama.



On with today’s blog:

Day 28:- A Picture Of You A Year Ago & Today, With A Description Of How You Have Changed.

The picture I have from last year was when I was a bridesmaid for my auntie Sonia’s wedding. I hate this photo so much.
The picture I have as my ‘today’ picture was took up at the farm by my sister on my phone a couple of days ago. I love this photo.

We can tell that my hair has changed colour, however, looking at both pictures I think the most obvious thing that has changed physically is my weight.
The lowest i weighed was just over 7 stone and i weighed that for a while; this was around the time of the photo. No matter what i ate i just couldn’t gain anything. It didn’t help that i was very poorly and therefore, my appetite wasn’t the best but that wasn’t something i could control or help. I would literally force feed myself most days to the point were i’d be heaving as i swallowed the food because i was just full and wasn’t hungry but i was too thin and getting poorly because of that. Plus i was seriously disgusted by the way i looked. I couldn’t look at myself in the mirror, i actually wouldn’t ever! It knocked me sick to see what I looked like because this was never what I wanted.. I wasn’t the girl who craved to be skinny or lose weight ever and I never will be. I’ve always said I’d rather be bigger than skinnier. I wore really baggy clothes to try and hide how sickly thin i was. I wouldn’t let people see what I looked like under my clothes; this included my sister and mum. I’d look in the mirror or look at myself in the bath and cry because these bones would be protruding out of my body.
It looked awful.
I looked awful.
I looked like i was this skeleton with skin sinking over my bones that stuck out like awful reminders of how poorly i was. The way i looked could be hidden with clothes but the aching i got couldn’t. Seriously it hurts being so boney. You just ache all the time. You sit down and it just hurts because your bum is too boney for any seat to be comfortable. Your ribs ache, your jaw aches, your legs aches it is just horrid.
I now weigh 8 stone 13 (as of earlier on) and that is thanks to the PEG feeding tube I had inserted in November last year. It’s taken a while to get to where I am weight wise now but I am happy with the way things are heading. My goal is to be 9 and half. My BMI is ideal and that was the hospitals biggest goal for if I headed onto the transplant list… which brings me onto my next paragraph on how I have changed.

In the photo fro last year, I was being referred over to adult care, as they wanted to send me for a transplant assessment. However, my health seems to have improved a little bit. I don’t know whether that’s my weight or just generally the rigmarole of Cystic Fibrosis. Ups & Downs?!
I’m not splendidly better i.e., it still takes it out of me to walk up a flight of stairs, and so I take my time. I can’t rush to get ready as it just gets me out of breath. I can’t run! I can just about walk at normal pace on flat ground without it being too much but not for long so I still take my wheel chair places. I still use oxygen when and as I need it. I still have my bi-pap (overnight ventilator) while I sleep, I still have over 60 tablets a day (excluding nebs, inhalers, insulin etc), I still have CF related diabetes, I still have lung functions that hover below 30% at best. I still rely on IV antibiotics monthly to keep my chest well enough to have a better quality of life.
I now have a 500ml of 2500 calorie feed running over 2 hours most nights to keep the weight piling on! Overall, I am lasting just the tiny bit longer out after each admission and for now... transplant has been put on the back burner for the time being.

So I have explained how I have visibly changed physically and how I have ‘health wise’ changed physically. Both mentally & emotionally I think I have matured and have had to consider and gain a whole new understanding and prospect on life at 16 due to turn 17… discussing being referred for a double lung transplant with your doctors is a bloody lot to have to take on board, absorb, understand, decide, think about, talk about, consider and go through. So many different and strange thoughts have gone through my head over the past year. Things I never ever expected I’d have to be thinking about at that age. The thought of death, the thought of quite possibly the biggest operation of my life, the thought of what I want to do and make of my life and a lot of other things to.

Frustration. Jealousy. Bitterness. Admiration. Strength. Sadness. Fear. Happiness. Excitement.
All of these emotions but for completely ‘abnormal’ 17-year-old reasons.

I felt frustrated at my friends who since school seem to have evaporated. I felt jealous that people got to live their life fully and happily and healthily and I didn’t. I felt bitter that all of my friends were going on to uni and I was stuck in this continual purgatory. I felt total admiration for my friend who had managed to achieve the goal I have set out for myself.. to have a successful transplant and live life as normal as can be. I felt strength when I pushed all the negative & bad feelings away to one side as I overcome them. I felt sad as a friend of mine passed away before getting her chance and all the bad & negative feelings came flooded back. I have felt absolutely petrified as reality hit me and I stopped sugar coating what was in actual fact inevitable. I have felt happy when I realised just how much love i have from everyone around me and when I finally got my tiny teacup yorkie puppy, Roxie! I have felt excited about my life when I think of the future and what I want to achieve as my 18th birthday draws close & closer.

I was 16 going on 17, I am now 17 going on 18 and I have had to feel, experience and think about more things than most people probably do in there life time.
I find myself lucky really because my outlook on life is such an amazing one that the small things in life really aren’t something that faze me. I enjoy every little piece of life & living and I keep hold of it for keeps.

Take Care, Soph xoxo
View Post

Day 27

Hi everyone.

I’ve been called a let down for not blogging for so long. I just ran out of inspiration for a while so I want to apologise!
I’m sorry and I hate to be a disappointment.

I wanted to tell you all what I had done with my week but I am sat here failing to remember what I did on Monday. I am going to start putting alot more effort into these blogs.. planningis going to go into them, i promise you! I already have some ideas so i am going to run them past a couple of people and see what they think but this will all kick in once the photo challenge is over... not long left with this now! Day 27 today :(
I don't want it to end... keep dragging it out but keep getting told off so here it is. The final few days <3
My dad’s birthday today so I want to wish the April fool a very happy one indeed!

On with today’s photo challenge part of the blog:

Day 27:- A Picture Of Something You Are Afraid Of.

I have one major fear that seems to have come from nowhere. It’s a fear of fish.
It’s very fussy though. For instance if you put a goldfish in my hand and told me to hold it.. I could do that quite easily. If you told me to put my hand in a tank with the goldfish swimming around.. I couldn’t.
So I have a fear of the when they’re in there own territory I suppose. I’m not necessarily scared of the fish themselves, I guess it’s when I have to invade there habitat and especially when I have to be in there personal space.
I absolutely hate walking through aquariums.. little tanks aren’t too bad but big bloody massive swimming pool’s about four times the size of me filled with swimming fish, sea creatures, whales and sharks creep me out! Luckily, due to my condition I can’t go scuba diving or snorkelling really. WOOHOOOO!! So unlucky to anyone who thought they’d make me face my fear :p
I went snorkelling in the past when I was around 12 and It didn’t really bother me but they were tiny fish and stayed right at the bottom of a 12foot pool. I was in, swam a 10-metre length and then out again.
No fish came near me and I kept my head up and didn’t look around underwater :D
In aquariums I cant really have a good luck around as It just sends shivers down my spine, talking about it and even simply looking at the picture I have used creeps me out completely. I close my eyes when we walk through the shark tunnel thing. My hands shake and I just keep my eyes closed shut.

Another fear I have that I have yet to encounter but it floats around in my head is being alone. NOT on my own. ALONE!
I feel like they are different things right?
Being alone is totally different to be lonely too. I can’t really describe why and this is really weird for me to talk about and I don’t ever usually talk about this but when I was moved to adult care and was real bad health wise and transplant was being discussed, I started to look up what it meant etc risks! I heard of more & more people dying whilst on the transplant list, I got scared, I got really worried and I started to think a lot. I obviously thought of all the positives and good aspects but I have always been told that it isn’t a get out of jail free card, it isn’t a cure, it’s not the ‘easy option’, it’s not a miracle worker and its not a certifiably, guaranteed to be successful.
I started to think of two things and since then they’ve stuck but at the very back of my mind. Before I tell you these, I need you to know that i believe in life after death (spiritually) AND that I am not scared of dying itself just these main things:

1) I’m scared that when I die, I’ll be alone.
I’ll have left everyone behind and moved on all by myself so that I’m totally on my own. That scares me!
2) I’ll be forgotten.
I want everyone to carry on with his or her lives happily as life does go on but I just don’t ever want to be forgotten. Is it possible to carry on with life happily without forgetting someone who has passed away? :/

I don’t know. It’s all confusing, uncertain, not nice and uncomfortable things to talk about so I never ever bring it up, especially right now as there is no need to so I never discuss it with anyone and try to suss it out myself. I’ll stop talking about it now but I just want to clarify that what I have decided happens is that when you die, you go into a state of unconsciousness where you’re in a constant dream world where everyone you love and everything you love is always there with you whether they be dead or alive in reality because in dreams anything can happen!
I like this idea and decided it’s what I shall stick with ☺

There is nothing to fear but fear itself… apparently!
Going to leave you with the funniest & at the same time cutest video I have seen this week :) ENJOY!

Take Care, Soph xoxo

View Post

let's play catch up & Day 26 and LOVELOVELOVE!

Good Evening,

Well I’d like to thank every one who has gone onto Natalie Frenchum’s justgiving page to donate money for both Nat’s parachute jump and Chelsey’s X-Factor audition. She auditioned yesterday (26.03.2011)
She sang, Adele’s ‘Someone Like You” but unfortunately didn’t get through to the next round. She queued from 2am Saturday morning outside Manchester United’s Old Trafford Football Ground in the freezing cold alongside many other contestants. She deserves a bloody medal. At the moment the grand total stands at £613 might as well round that up to a very nice £1000 right?
Come on... you can’t blame me for trying! I just cant believe that if everyone I know just gave £2 it would be unbelievable just how much we’d get! Blows my mind.

So I was advised recently by the lovely, Woody to have a listen to radioheads album ‘the bends’ as he discovered I love muse and reckoned I would like that album so I’m currently writing this blog whilst having a listen to them ☺
I would therefore, really like to thank Mr. Woody for introducing me to this wonderful album which is currently being downloaded onto my itunes!
I think my favourite might just be ‘iron lung’
I love the composition & music.
They won’t ever live up to muse though.

I just want to quickly mention how special it was for me to be mentioned in Victoria Glen’s blog on her inspirational people. I was very touched that someone who I admire and aspire to be like thought such beautiful things about me. Actually brought a tear to my eye because I am such a softie obviously!
At the end of the day, I just see her as being so strong, so courageous and brave and more determined then anyone I have ever met. She continuously remained independent throughout all the stages of her life. No matter how ill she got she remained constantly dependent on herself and I totally admire that and would do anything atall to be able to be like that when I get to that point. I don’t want to give in and admit defeat I want to fight as strongly as she did and overcome the bad! How much more motivation can you get than somebody who achieved exactly what you want to eventually?
It’s my drive to be able to do it because Tori did and I just can’t ever begin to express how much love I have for the beautiful fiery haired lady! <3
Not much to report other than that so…. On with today’s blog:

Day 26:- A Picture Of Something That Means A lot To You.

This is bloody impossible to choose just one thing so I’m going to choose LOVE!
That’s allowed right?
I love to be loved… doesn’t everybody?
I’m going to write about my major things that I love in all the different ways :)
Yes.. there shall be a few pictures in this one so prepare yourself people!!

I obviously love my mum and dad and as you can tell from the previous blog they are worthy of much more than a few words or paragraphs on my online blog! I love my dad’s ability to make everything okay. He manages to make me feel safe and okay when things just don’t seem it. I love my mums’ ability to make me feel NORMAL! :)
It is there 15th wedding anniversary this in June of this year. I love them with all I got and there love will forever be unlimited and unconditional.
I love you mama.
I love you papa.

Then there is Arran, my boyfriend. I’ve been with him for 19 month and I still get the butterflies and goose bumps. He knows exactly how to make me smile and knows just when I need that little boost. He can read me like a book and there really aren’t many people who achieve that. I’ve been told I’m very hard to read as I’m a great pretender. I have a flawless fake smile and just get on with things and tackle things head on and deal with the impact all by myself. I don’t mean to do it but that’s just how I’ve coped and its adapted and stuck on. Force of habit makes it hard to erase the fake smiles and things. There are no fake smiles with him though. He knows. I don’t know how and I guess I never will but I think it’s special. I’m not the easiest of jigsaws but he’s finally fitting and getting the pieces together now. I’ve never felt this feeling before and I really like it very much and don’t want it to ever go. Yes we are young and I know that but with me needing him more than ever at times… I suppose we can’t help but have a close relationship at 18 years old. When things are real bad or when I am thinking about things and I start to worry… I like to just picture what my life could be like with him in a few years and I get so excited you wouldn’t believe. That’s why I need to stay so healthy. It’s for that future i picture in my head because it’s so bloody beautiful. He makes me happy, he makes me feel special, he makes me feel beautiful and he makes me laugh like no other! My Booshy boy!! <3 I love you.

My sister Bethany is absolutely amazing and although we fight and we argue I would die for the girl. She makes my whole life better and she is my back up support system and she has no idea that she is. When I feel like I’m slipping and starting to fall apart a little... I think of Beth and I think of some of the funny stuff or the real cute stuff and it just helps me get my bum in gear, keep my head up and smile! The funniest kid in the world she is and the most beautiful girl I ever did see. She really is gorgeous... she’s going to break a few hearts I’ll tell you ;)

My other ‘sister’ is Chelsey. So she isn’t in any way related to me by blood or law but she has been there for me more than any other friend ever has and so to simply class her as a friend would be an insult as she is worthy of so much more.
I’m privileged to have her I really am. I will forever treasure her as there aren’t many people who have a friend like Chels. I’m lucky but I do hope she knows that she’s lucky too I will always be here for her. I’ll do anything in my power to help her out if I can. I know I must be a pain in the arse for her sometimes and I often feel like a burden to her but I know she knows that if our roles were reversed I’d do exactly the same for her. She is currently a student nurse and in her second year at uni. She is going to be a fantastic nurse she has all the qualities needed. Chels has a heart of gold; she is selfless, caring, smiley, approachable, helpful, chatty, reassuring and encouraging.
I Love Both Of My Sisters Forever & Always. <3

Obviously this is the love that I have for my gorgeous babe… Roxie Wheeler.
My little girl will be one-year-old next month. I feel as though she is my baby. I love her as though she is my child and when I have a horrid dream that she has ran away or got hurt, I wake up crying! :(
Everyone has a soft spot for Roxie as she is the most loving puppy girl you will ever come across and she is just too cute!
I actually go to bed at night looking forward to my cuddle I know I’ll be getting in the morning off her. She sneaks up the stairs, through my door, jumps on my bed and buries her way under the covers till she finds me and then she just sits with me while I do my physio and coughing up etc.
She looks after me and keeps me company while everyone is out at work & school all day etc.
I love Roxie Wheeler! <3

My two favourite non-living things in life are music & writing.
I love how music is truly what feelings must sound like, don’t you agree?
I have a deep and meaningful infatuation with music, it’s something that everyone can agree on. Not everyone reads a book or watched telly but EVERYONE listens to music one way or another.
I think music can act like a mental time travelling device. When you hear certain songs does it take you back to a point in time when something was going on or something was happening. Maybe a break-up or a rebellious stage in your teenage years or a first date or kiss maybe?
I like to dissect the song and find out what the story and meaning of the song is and I also like to sit and listen to the interesting instrumental parts... muse have tons!

Writing is my second love.
I do love writing but I have to be fully and utterly dedicated to it. I am trying my best to stick at it I promise you this. I like writing stories and creating characters more than anything. I like creating these tiny dramas as they just flow and come from nowhere. It’s the planning I hate. If I am writing a story I just write it all out however it flows and then I structure it all etc.
Fictional or non-fictional i love them all.
You can quote me on this as i have said it many times before, but i love how words can have such a powerful effect on you.
They can transport you to a different place, make you feel things you’ve never felt before, make you go through things you’ve never experienced before. Take you places you’ve never been, see things you’ve never seen.
I love how words can awaken your imagination. How suddenly that little kid inside you appears again to paint pictures in your head.
I adore how writers have that ability to make you laugh, cry, inspire, imagine, FEEL things.
It amazes me… after all, they’re just words aren’t they? :)

Okay I think I’d love to finish off this blog with this video by a beautiful and admirable lady named Eva Markvoort. She had Cystic Fibrosis and created a lot of publicity and awareness for CF and Organ Donation over in Canada & the States mainly but she was a big inspiration to people all over the world really. Eva got her transplant but then went into chronic rejection and was placed back on the waiting list but the call never came and devastatingly Eva passed away on March 27th 2010 at 25 years old.
This video shows Eva singing a song that I always sing too and it fits perfectly with today’s blog… goodnight & sweet dreams Eva <3

Take Care, Soph xoxo
View Post
Next PostNewer Posts Previous PostOlder Posts Home