Christmas Eve Eve!

Hello!!!
I have escaped from the hospital yay!!! I did end up going in as an emergency... was drowning in gunk and physio was not working so i was admitted via resus, suprise suprise. I had a really cool nurse though, so that made it a bit better. I was moved to the CF unit which made the stay a lot better, but was not there for long as a CFer had to go in for IV's too :(  Eventually My infection markers went down and i was finally allowed home 7 days later. 
I had a complication this admission which i am very annoyed, puzzled and worried about. But mum has put me at ease so hopefully it will sort itself VERY SOON! Im carrying on with the antibotics at home which i finish on Thursday :) And i feel better! :)
So Christmas should be great! Me and my sister went shopping the other day and it was SOOO BUSY! But we got what we needed and then relaxed in costa while mum got her hair done! :)
I shall leave you with pictures from my admission and a video of my room... haha i get bored as you can tell!!

  Me, my sister and the Nurse LOL

 Me and Bruce :)

 Me.... hahaha - sad face lol

My sister and her POO CHART HAHAHHA

Nails :)
 

 Bored..

 Bored...
 

 Bored.....

SNOWMAN!

Top, second and 5th highest scores on gems... haha

BORED....

Helicopter on the hospital roof!

 

Hope you have a Merry Christmas and Happy Healthy 2013!! I love Christmas! :)

Im so Lucky.....

Hello!
Well the winter is trully here, i have a cold! Well its the weirdest cold i have ever had....... had 2 days with just a sore throat and was fine. Then  woke up with a blocked nose and a belly full of air becasue my Bi-pap must of been trying to force air through my blocked nose and somehow pushed the air into my belly- dunno how that works though! So then i was really out of breath, but have been getting more and more breathless the last few months anyway so just ingored it and thought the blocked nose was an allergy or something. Then came a weird chestyness - wheezy but with crackles at the end of each breath. My mucus is a lot thicker than normal and my normal is thick as so i am completly filled with real thick gunge that does not shift!!! I have intense coughing fits which do nothing and im getting so tired now. I feel spaced out too a lot of the time too and have a temp. Im on this weird antibiotic called Moxiflocacin, which loads of nursers have never herd of - to be fair neither had i until Brompton gave it to me! Im having extra physio and im trying to do active breathing when i can to shift it, i feel so breathless i cant even eat! So feeling crappy :/ Oxygen saturations were down to 87% this morning but cough assist got them up a bit.

My best mutant friend Lucy has been looking after me though :) Love my Luc :) She is amazballs :) haha

So yea - hope i feel better tomorrow, if not i think i will go in for IV's so i can be well / out before christmas, i dont / cant be in hospital for Christmas AGAIN!

On the bright side my letter has come through from my consultant saying they cant stop my physio which is great - hopefully they will have learnt that from this bloody infection; to be honest its probably partly down to that!!!! All that crap building up brewing bugs in the bottom of my lungs that has now been infected by cold germs is gunna make the situation a lot worse for me now. Im so annoyed at them!! Grrrr haha anyways if i end up in ICU mum will get loads of money haha. SUED! :D 

Anyways I Hope you all have a fab christmas!!! and a healthy happy 2013 if the world does not end ;) lol

Unless you get it... you really dont get it.......

What people dont understand, they dont / wont believe...
I Cant say i really blame them, if i were them it would be hard for me to believe too. But then again in this particular situation i would probably look a bit harder to find the truth. Listen to the person going through the daily life with a complex condition nobody really understands, and because no one else has it nobody knows what will happen next.

I have kind of had enough of people just telling me to 'stop giving them all that dying crap' when i say i cant breath and need physio and my ventilator on. Because quite frankly if you dont have 26% lung function, then you dont have a CLUE about how i feel everyday and that when i do ask for help i am actually deep down terrified that it will be my last infection, my last fight. I know it sounds dramatic and stupid; but to me and my family who have been told that i need to fight and keep going when im in ADU / ICU its pretty darn scary. Knowing that a chest infection could potentially make me pop my clogs (lol) is always niggling at the back of my mind. And unless you actually get my disease... you just dont get it. No matter how hard you try you will never fully understand. Understand how dam hard it is to get up when you vent is taken off every morning and takes your breath away and you spend the next hour trying to regulate your breathing. Understand how by 3pm your lungs feel so stiff, painfull and heavy every second but you have to put it to the back of your mind and carry on. Carry on and put a huge smile on your face, forget the struggle and live for that day because you can never get it back. Some days it gets too much, the pain gets so bad you actually cant breathe and the only thing you can do is take morphine and sleep, sleep and hope its over when you wake up. Everynight i wake up multiple times - sometimes i pretend im asleep from the night staff haha and i just think - what if this is all just a dream. Ill wake up soon and be a happy healthy 7 year old - or at least be at that stage of my condition before it effected me much.

I really needed to write this, get it off my chest haha how ironic! Anyways... the last few months its been bothering me a lot. Thinking about transplant and how likley  it is for me to get one, college is getting to me a bit and because im so tired all the time im taking things to heart a lot more. Things that i may be taking to personally, that actually dont mean anything at all. And i am going to write about this person, not going to name them because they know who they are, and they wont read this so why not! Basically one of the people i actually trusted a lot is now avoiding me, telling me to shut up with all that dying crap when i asked for help as i could not breathe... and i am basically quite upset about it. Its like i can see her true personality for the first time. But i dont want her to be like this, i hate it!!! I would much prefer to get on with everyone but in life that just doesnt happen. I thought this person new me, new that i would never and actually could never make up being a bubbley drain pipe lungs! I just dont get it.... as i said im soo tired all the time these days that i am probably taking things way to personally. But its just how i feel and this blog is my way of getting it
 out of my system!! haha even if nobody reads the crap haha!!!

But yea... i do have some amazing people around me, mainly my family but also my friends and actually some staff are pretty amazing too - they know who they are :) So yea..... im really really tired so im gunna buzz to go to bed and maby, just maby i will pluck up the courage to give this blog address to my house manager. I would love her to understand and known how im feeling but i cant say it, i have to type it.

Ok Bye!!! haha
Love you all ;)

And yes im thinking up my next naughty plan to cause mischeif in some way. It makes life more exciting ... mwhahahahahahah :)