Been thinking

I read Toria's eulogy yesterday and haven't stopped thinking about it since. Her sister wrote it and did a brillaint job. She mentioned things that Toria said about Cf and how she looked at it. and it has really inspried me so much. I am now looking at My CF in a total different way. It is what makes me who i am it makes me special yeah it's a horrible and crap illness to have but reading the eulogy it made me think If i didn't have CF would i be the strong person that i am cos of my CF?

Ok i'd be a different person i know that i'd prob be out partying every weekend working and driving. But Not really apparicating life. With CF it makes you realise just how short and preciuos life really is. I am me because of my CF i am strong and a fighter. And i want to thank toria for being such a inspriation thank you sweetie xxx and to shellie for sharing the eulogy with people who couldn't attend toria's celebration of her life.

My mum said to me yesterday that i was a nicer person to know now. As i have been sch a awful person to alot of people in the past and i just never knew why and still don't. All i was doing was alienating and pushing people who loved me and wanted to be there for me away. But not anymore i am new me I am a nice me nomore being a bitch to people from now on it's going to be take each day as it comes.

I went to my bf's last night and we kinda had a row but it was good in away cos we both opened up about things. He told me he's afraid of commitment and that he can't offer me what i want which he's right he can't. He also said he isn't the loving kind which i know he's not lmao!
So after it had all cooled down we decided that we are better as friends and as soon as we had said that we both totally changed around eachother and just had a laugh about the most random things it was nice and it was the first time i had really felt like the real me around him. So i think he is now going to be one of my close friends which will be nice. We are gonna have dvd nights as i was supposed to stay last night but couldn't sleep and cos i couldn't sleep i started to feel really odd and got that awful feeling of passin out but without the pain which was weird. so asked him to take me home at like 3 in the morning i felt so bad for doing this but i thought it's not fair on either of us if i don't feel well. So he did bless him. When i got home i eventually got that pain argh! and it lasted for ages it was awful. It didn't help that i was dying for a pee lol sorry. And i knew i couldn't get up or i'd just get worse and eventually burnup. But i really had to go so i got up and went. I had to sit on the bathroom floor for 10 mins after as it was pretty bad the pain. I then got myself back to bed and just layed there and eventually fell alseep.

I have slept most of the day today as fet exhausted. I feel ok now just a little headache. anyway am going to make a cuppa before the x-factor result show i hope alexandra wins she's awesome. and i reckon britney will mime tonight i mean come on she ain't gonna sing live! adios amigos xxx

bored bored bored

I'M SO BORED.............. i don't know what to do with myself lol. I have listened to music and bopped along to britneys album. and am now boredy bored again. my brother is hoovering oh my god i nearly fainted at the shock of it! hahaha! i watched quantum of solace last night i really enojoyed it. and i watched house bunny during the day it was also good and funny.

I am really enjoying hollyoaks late night this week niall is back and is stalking steph eeek!

I don' really have much to write about really i'm just bored. Am going round my mum's for the day tomoz so that should be cool. waiting for a few deliverys aswell to turn up one came today am waiting for 2 more think one will come monday and the other tomoz. i did all my xmas cards last night yay i'm pretty much set for xmas now x

so....

Well hello all I am feeling pretty well apart from these annoying pains in my chest that i get ARGH! Every time i get up to do something like feed the aniamls let them out do washing or tidy up i get this pai and it makes me wanna pass out. Now i was told it's mucus plugs blocking my air sacks and dropping my oxygen sats but i don't think it is cos i do my physio and take my hypertonic saline which loosens it all. i just don't know . I decided to go asda yesterday as i felt good and said to my dad i won't take the wheelchair as i feel full of energy. well after 10mins of walking around i started feeling light headed and then the wonderful chest pain kicked in. and i had to sit down. after about 10mins i started to feel a bit better i just looked like someone had thrown a load of water t my face lol. I decided to try and carryon shopping but after walking just 2 steps i could tell that my body wasn't going to let me so my dad told me to go wait in the car. I was not happy with myself as i just want to be able to do normal things. it's kinda even scarier now cos i have a bf and am worried bout if he wants to go out places hopefully he'll be bring like me and wanna stay in especially with it being so cold out lol. anyway i'm staying happy and just getting on with things i know my family don't expect me to do much so i feel abit better bout not helping out more. I've nearly done my xmas shopping i done it pretty much all online again this year hehe. just got one more order of stuff to do next week and then i'm done. :) hopefully can put the tree up soon i love chritsmas cos of the food mmmmm should hit 50kgs in no time ;) xxx

From me to you. <3

It was Toria's funeral yesterday but cos i haven't been very well and there was a risk of cross infection So it was best i didn't go. I decided as a way of remembering toria and saying goodbye i would release a ballon with a note attached. I decided that dunstable downs was the best place as it is high up and windy.

So me and my mum went clintons Ian (my mum's fiancee waited in the car for us) i was going to get a piglet 1 but my mum then pointed out the me to you bear and i thought this was so much better then piglet. So we got one and as i got in the car with it it had started to leak helium :( i was a bit upset my mum took it back to the shop and returned with a nice new one i was chuffed :).

We then drove to dunstable downs. When we got there my mum said it's going to blow behind us and not out over the hills which is what i wanted it to do. so we walked up the path a little way and we both were worried that when i released it it would bounce along the ground and not go up. I let it go and it floated up into the sky it was so lovely to watch as it was going so high up after about 10mins it had dissappeared into the clouds ready for toria to catch it. It made me feel so sad and so happy at the same time i was sad cos i miss her so much and wish she was still here today. But i was happy that i could do something to say goodbye in my own way. I think it's prob still out there somewhere floating about :)

RIP toria i'll remember you forever xxxx

END of my 10th lot of iv's woooooo!

Had clinic today all was fab! I had lost a kg last week and was very upset bout it but today i had gained it again woooo! the docs and dietian were all pretty shocked as for me this is a big thing as before if i lost a kg it was gone and would be so hard to get back but this hasn't been hard. My lung function is up a bit not majorly but it's never gonna be great but it's up so again i'm happy. I went in my wheelchair i probably could of walked but was bit nervous bout tiring myself out. my oxygen sats were 89% which i was worried about but the doc seemed ok with it so it stopped me worrying. i have to go back in a month hopefully things will be good still. gonna take some choccies and xmas cards with me next time actually there prob fed up of chocolates so will take in some tubs of haribo lol something different!

Am at my mum's now til saturday gonna come stay here every other week for a few days change of scenery. not much else to report really just gonna chill.

Hurray for hypertonic saline!

Yes it is briallant i have been using it for a few days it is working well. I haven't done alot today just chilled and watched tv and ate yea my appetite was a bit better today i'm pleased to say hurray. My dad said i seem very churpy today and i feel it lol. I haven't really got much to write about to be honest lol maybe i'll have more gossip tomoz I'm off to watch resident evil 3 lol ZOMBIES!!!!!!!!!!!!!!!!

ARGH!!!!!

ARGH! I had a checkup yesterday as it was mid iv's and i have lost a kg ARGH!!!!!!!!!!!!!!!
I'm not impressed stupid bumhole poo sticks bumhole chest infection! it is getting in my way of eating rargh........! But I must remain calm cool collected and most of all postive otherwise i'll end up crying and making myself feel worse and just generally pants! I will gain the weight back onc this pooey infection is under control. And then i shall be grabbing that 50kg's with both hands and laughing saying hahahahaha i got you bitch yeah i got you! Sorry if i sound loopey im just in one of those moods lol laughter is heping me stay postive.

On a better note i played the xbox with my brother today we played burnout 3 road rage and i beat him 20-15 ahahahahahha! he was not happy and said i was cheating funny that i've never played the game before today hehe! He's such a bad loser!

I was reading the paper about baby p today my god it's so awful what he went through. i signed the suns petition to have the people who let him down sacked. I hope the peeple who done this rot in jail and never get to enjoy life again they don't deserve to after what they did to that innocent defencless boy R.I.P baby P x

Anyway it's nearly time for my iv's was going to see whats on tv but so far have found nothing it's children in need tonight i find that a bit boring tho x

physio is.....

A huge pain in the arse! not literally tho... Anyway it's just gone 2AM and i am awake as i had to get up and do some physio as my chest was so tight argh! bare in mind i done physio about half 8 after my hot bath as i always feel very lose after. Anyway i struggled getting stuff up as it has been so thick lately.

I have started to feel better in myself and am getting bit better at gettng up the stairs sometimes lol sometimes it's still abit much. I'm still sleeping downstairs on the sofa as it's easier then going up and down the stairs all the time to keep getting my meds. Tuesday lisa one of the CF nurses came to see me for a chat and some blood tests. I told her i was starting to feel better and my oxygen sats had gone back upto to 93% hurray! Well i was feeling better then last night after my bath i did physio then my neb and felt ok then bout half a hour later i started feeling very tight chested and had my inhaler this didn't help and i started to feel sick and achey. I didd my iv's as normal and still felt rough. Then my chest really stated hurting it started off in the middle then it moved to my right side it was so painful i couldnt lay down i was up all night in tears it hurt so much my dad came down at one point and gave me a hug and sat with me for a while i told him he should go to bed as he h ad to wrok the next day. He did and told me to text him if i got worse. I decided i felt so tired that i was just gonna laydown and grit my teeth through the pain. Then my cat came and layed on my chest and snuggled up. i eventually fell off to sleep. I woke up about 7am and was still in pain but it was a bit duller at this point. i decided to sleep all day and just wake up to have a milkshake and do my iv's i did this and by the time my dad got home at 6pm the pain had totally gone thank god! I honestly have never felt something like that before it was awful. I have hospital tomoz so will ask what it could of been i was thinking sticky mucus but when i tried getting it all up it wasn't moving maybe a pulled muscle? Nah i've pulled a muscle before it was never that painful. we'll see what is said tomoz. I am going to have a 3rd week of iv's as they have only just kicked in this week. so thought it was the best thing to do. i think i have lost some weight aswell cos this chest infection hit me pretty hard my poor body has taken a beating.I blame the flu jab i had i went down hill not long after it and i never have problems with them argh!! But my saying is i may not be winning the battle but i shall win the war lol if that makes any sense at all! Anyway i should try and get some shut eye now that i can reath a bit better now my lungs are a bit emptier. nighty night don't let the bed bugs bite xxx

the good and the bad!

Hello :) I had clinic today as i was mid ivs it was decided that i should ahve my meroepneum changed to tazocin as mero wasn't working so am on tazocin and colomycin iv's. gotta go back next week. my weight has gon from 46kgs to 46.5kgs which is good considering i've been really bad and pretty much living off my supplements lol. the dieticain said to continue that if it's all i can manage at the moment. It's not that i'm not hungry it's just i'm to tired to get up and cook or prepare something so supplements are much easier just grab one and drink lol althought have had to use scandi shakes as have run out of fortisip :( gotta pick my prescription up tomoz.

I also dicussed going to Toria's funeral. They said it's my decision but if there is alot of people with CF going at this time with my chest being bad and me trying to get my weight up so i can be assesed for transplant that it would be a big risk and could make me ill again also with the whole emotional side of it to. i know Toria would understand and be happier if i kept myself well and was able to get on the transplant list. I did feel bad about not going but i do know it could be risky and could even jeopordise the chances of me getting on the list if i catch something bad. plus i'm fighting a tough infection at the moment that seems to be a sttubborn bugger but never fear i will win the war lol!

I have got halfway through my xmas shopping now bought my mum some presents today and have got all my brothers and ordeered my dad's presents today so should be here sometime next week or even tomoz or saturday. Also ordered my mum's fiancee a present. i'm pretty stuck on what else to get my mum tho lol.

I'm going shopping again with my mum tomoz to finish getting some stuff for my dad. :)

round 10....DINGDING

Well i dissapeared into hospital last wednesday as my chest was pretty pants! my lung function had dropped quite abit so was very concerened my oxygen sat were down to 89 which is low for me as mine normally are about 93/94 so was very concerned i didn't wanna go in but was talked round lol.

I had a oxygen sats machince on at night to measure my pulse and sats to see how far they dropped when i slept although i hardly slept as everytime i drifted off the machince alarmed cos my sats had dropped low. My sats at 1 point were 53% which is not good. So it was decided the next night to try me on oxygen over night and then prick my ear in the morning to check my blood gases and to make sure my cardon dioxide wasn't to high. It turned out to be normal with oxygen on so the decision was made for me to have it on over night. was kinda unhappy cos i always said i'd never let it get to tis stage but it has and now it has not alot i can really do about it but just get on with it. there is also talk about having oxygen during the day for when i move around as my sats drop quite low again. But again not happy bout it but if i happens it happens gotta get on with it. and if it makes it a bit easier to breath then suppose it ain't gonna be that bad. I'm more just annoyeed at the fact i know i'll get people looking at me feeling sorry for me which i really don't like.

So anyway came home friday evening and am on mereopneum and colomycin iv's which colomycin is a new one for me i have always only had it in neb so am having a few side affects my skin is getting really spotty and i keep staggering around like i'm drunk it's annoying. and this is also the 10th lot of iv's this year hence the blog title.

I've started my xmas shopping got all my brothers presents just gotta order my dads this week and am trying to decided what to get my mum lol. I tink i will struggle end of november with y money as my DLA is changing and will no longer be paid with my income support and instead will be paid on it's own every 4 weeks which is a pain in the bum so don't know how i'm gonna cope! so we'll see.

I spoke to my hospital today as clinovia forgot to deliver my colomycin today whoops. it got delivered eventually lol one of the cf team isn't sure if i should go to toria's funeral cos of cross infection. which to be honest i could do with out getting anything else right now. I'm sure toria would undertand tho. am thinking of realeasing a ballon of piglet on the day with a nice note attached.

I'm so bored this evening there is nothing on tv argh!!!!

my mum said she might come round tomoz if she finishes early tonight. be nice to see her. have been sleeping downstairs the past few weeks it's just alot easier with eing on iv's as my little fridge is dwn here plus i'm right near the kitchen.

anyway tata for now :)