adult centre... fresh pair of eyes!

My health........ argh!!!!!!!!!!
just needed to let that little bugger out!

I am excellent at putting my head up, gritting my teeth and barging through with a huge smile on my face... i have to be right?
There are clearly worse things in this world than me having CF and my health being a real pain in my backside!
I think maybe i’m just a little overwhelmed?
I get told i’m an amazing, inspirational writer and i think it’s because it’s my release... i never talk about how i am really feeling, it’s bad i know but i’m petrified of letting people know that the brave, strong, happy, positive girl gets down and cries and struggles to deal with things.

On the other hand, i feel the need to be strong not just for myself but my family too... i hate crying in front of my sister... she’s too young to have to deal with the true gritty bits of CF and she doesn’t need it so i smile and be cheery in hospital.

I know my mum and my dad struggle too i can tell, i can see it, i can hear it, i can feel it.
I have no idea what it’s like for them but if i tried to imagine i suspect it’s a little or maybe a lot torturous?
Your sat watching your child fight something they can’t see or smell or hear or touch but most of the time it’s got the upper hand and you as the parent have no control... no way of PROTECTING and COVERING them from this badness. So you comfort, support, encourage and love them and you make the bad times fade away for that child.

Mum? Dad... if you ever feel helpless i just want you to know that you do an amazing job and if anyone was to be named the strong ones it’s definatly you two.. i lean on you. I rely on you. I can’t do it on my own and i don’t do it on my own because you’re always with me... ALWAYS! The only way i can think of thanking you is by keeping my chin up, keep fighting and making you proud.

You’re reading this and possibly thinking, “woah... abit deep this one isn’t it? abit depressing isn’t it?”
There is however a reason for this...

Most of you probably know that Cystic Fibrosis doesn’t get better and it gradually gets worse and i am compliant with all my meds, physio, exercise and other treatments yet still my lung functions and quality of life just is not what it used to be and that’s more than understandable! My lungs are tired... simple as. They have had to work harder than what most people would think. I only have half of my right lung so that little trooper has been a star all things considered!
Recently i was admitted into hospital after rushing to A+E with my mum and dad early hours of Sunday morning. Not with a bad chest... no, no; HEADACHES!
Not just a usual headache though it was unbearable i would literally lie down on my own in a dark, silent room with my eyes closed and usually i’d simply fall asleep. My temp was raging and my dad decided he had waited long enough for it all to settle down so despite my denial and dismissive “i’ll be fine” we got in the car, left my sister at my grandma’s and arrived at Manchester Children’s Hospital A+E around 00:30ish! The triage nurse called my name and we explained what was wrong, i had my temp checked and it was flying high at 39.8 and my sat’s (oxygen level) was extremely low and in the 60’s; my little heart was beating hard to try and keep me fighting as my heart rate raced at 160 odd.

I took some paracetamol, was put in recuss and was put on oxygen!
Want to know the worst part? I didn’t even think i was sick enough to go to hospital! I honestly would not have said my sats were as low as in the 60’s and that i needed oxygen. I have no idea why... denial? or have i just got that used to being how i am and feeling how i felt that i’d almost adapted to it? conformed to being ill? That worried me a little because if i can’t even tell when i’m needing IV’s till i’m practically gasping and needing to be seen urgently, then i’m doing myself and my lungs no favours atall and maybe this was a sign of what later followed..
anyway, i was put on IV’s and i had to stay in as i needed oxygen, my temp was still high and i was just not well. My doctor decided to put me on a machine named the bi-pap. What this does is it is worn while you sleep overnight and it forces air into your lungs therefore aiding you to him so your lungs don’t have to work as hard.
why did i need this? well... as i have said before my lungs are getting very tired and throughout the day and night i was restoring too much carbon dioxide and this was causing the headaches and the sleepiness.

Since being on the bi-pap, my headaches have stopped; i’m sleeping through the night and not all the time! gradually you could see an improvement in my colour and my energy levels. Two things that weren’t improving were my lung functions and my weight gain. My lung functions after a week of IV’s were still in the 20’s. my doctor wanted a meeting with me and my parents.

All he basically said was that he felt like i would be best going over to the adult centre now as they may have some new ideas on how to try and improve me.
i keep being told that a fresh pair of eyes looking at my situation may do me some good so i’m hoping they are right! :)
I’m not too fussed about going over to the adult centre... more bothered about leaving my doctors and nurses and physio’s behind; people don’t realise just how close the bond is between patient and CF team. Saying goodbye is going to be really sad! :(

Anyway.. thanks for reading and that’s all for now ladies and gentleman!
Take Care, Soph xoxo

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