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 :)

Toe Trouble...

I seriously cant get a weeks peace! haha
I have got an infection in my big toe :( lol And because of my diabetes and low immune system i have to watch it really carefully and im now on more antibiotics to add to my usual daily ones! It actually hurts a lot for such a small body part! haha So yea..... thats a bit of excitment lol who gets a bloody toe infection LOL. Anyways i have to get the dressing changed daily and yea haha.....

Other things going on, i getting my car on Saturday :D so excited, i will be able to go home / out more with my sister and im really happy about this as i miss her LOADS! I will also be able to go and see my best friend Amy at her lil place in Uxbridge (no sure on the spelling!?!) where shes at uni :) cant wait to see her again, miss her all the time too! Love her like a sister <3

The new Car that i can just drive my chair into.

I'm still feeling so tired all the time, and my lungs ache sooo much these days! Hopefully RBH clinic will come around quickly to discuss transplant assessments....

OMG im going to see Nativity 2 on Sat, it will be amazing as i loved the first one too! haha

BYE!! :)

Ignorance...

Just A Rant to get it off my chest... quite literally!!

When you have any chronic illness it takes a lot for you to actually tell people you need help.
Just now i told someone i needed help in my unique way... lol I said if i can't have my nebs now i will die, as a joke but it also has a serious point. When i say i need physio or nebs, i do. End of. And being told to stop giving all that 'dying' crap and the person walking off really does not help. But also puts me off wanting to ask for help again. And this so called carer is supposed to be my Key Worker..... never gunna happen now lol!

OK rant over - and im fine :)

This Place does stress me out Soooo Much but the good bits are so worth the horrible bits! I love my friends and some care stuff soo much its worth it in the end!

*Edit*  (- the day after)
Last Night The amazing staff sorted me out with physio and cough assist and sats went from 91% on oxygen and Bi-pap to 99%!!! amazing how much mucus can make your lungs worse! - Cant acutally thank them enough for clearing it! Happy Bunny :)

Busy...

Well.... i have been really busy with college work and i should really be doing coursework right now but that can wait a bit. My lungs have been a lot more productive the last few weeks and i think its probably down to less physio - my college will only do it once a day for 5 mins because the 10mins each lung twice daily takes 'too much time'! So i have argued and cried and argued and not got anywhere even though it cause me to need to go in for IV's a few weeks ago! I have found a way to clear some of it myself without getting too breathless, i do lots of deep breathes follwed by huffs and after about 15mins i usually get a good result haha. So i am being more proactive in stopping my lungs get worse but i still think its wrong that they wont do it.

Anyway my sister has decided to dye her hair pink, its mums birthday next week and im gett my new motorbility car on Friday!! So i have no time to get sick! I am more breathless these days and i am kind of fed up with it, plus my morning and evening nebs (all 4 of them) take ages so i have treated myself to a new pari neb!

Its small, plugs into the mains and is portable so now can have my TOBI faster. I used to do my TOBI in my eflow but it makes me cough so much and tastes foul so i have to put it through my old banger neb from peads that RBH gave to me when i was like 13! So when this comes on Tuesday my treatment should be a lot quicker :)

Half Term :)

 

Well i had a great half term and am now back at College :/ lol
On Monday I went to the Harry Potter Studio tour with my family which was amazing!! I love Harry Potter so i thought it was fab! We all went out for dinner at the Harvester after and it was a great family day out! I even had butter beer again, which made me rememebr the time i went with Paige, Kate and Craig from College and Paige dropped her butter beer all over the floor and had to get another one! LOL only Paige could do that! haha


Me and My sister with the Death Eaters..




Me and My sis




Us...

On Tuesday i had to go for a CT Scan of my stomach. I have a PICC line so i thought they would just put the contrast dye through there.... how wrong was i!! I had 3 stabbs and 3 canulars later and they got one in! The reg on call had to come and put it in! I was brused and so sore! I had forgotten how much canuals sting in your hand!! oucheee lol!!! I dont think i will take having a perminant line for granted any more! Thank God i have one!! The canual they got in was a small blue one, the pink ones would not go in my pathetic veins, i remember when they could only get yellow ones in! (the ones they use on prem babies!)  So the scan was quite quick i think and the dye felt all warm and tingly as it goes through your body! And it makes you feel like you wet yourself !!! While we were waiting my sister decided to put some rubber gloves on her feet..... and walked up to the ward with them on and my sister and my carer got told of for peeking into the scanning view room where they would of been able to see my insides! But they got told off before they could see :( never mind theres always next time!! I dont get the results untill 2 more weeks when i see my surgeon, so fingers crossed they found out whats wrong!

The rest of half term week was good, i went to Portsmouth shopping and Jamie Olivers Italian with my sister and my carer which was great as i had never been before!! I was great to be at home, see my cat ;) ans just chill and do nothing and sleep!! I have lots of appointments coming up so will post about those next!

Chloe :)