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

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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
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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
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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 http://www.organdonation.nhs.uk/ukt/default.jsp

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
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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

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