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.
I LOVE YOU
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx




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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