x A fun, busy weekend and then another cold x

Havent updated for a while and wont do too much of a blog today as im too tired :(
Last week I went back to work for a couple of days and it was lovely to see everyone!! Didnt do much else that I can think of at this moment in time!! Oh i do have some news - I got all my results and i ended up with a 2:1 degree which im so happy about!! Although one of the results is still wrong - (a looooong story) - so I emailed my course leader and asked if he could just change it on the system and he sent an email back saying "I can not prioritse this now. Email me in a week" How frigging rude!!! My mum went mad and so did I. Ive had nothing but trouble with that uni and they have not been supportive and are still not being so complaints are being made. I graduate on the 21st October and they emailed me with the times and the ceremony starts at 10.30am but we have to be there an hour and a half before then!! God i got to get up so early lol xx

This weekend was good but tiring!! My daddys birthday was on Friday and we went up to his pub as he had a mini party..he was already partly drunk by the time we arrived but it was fun and he loved his pressies which were a few motorbike tshirts, a book and a game you put on the bar :) Saturday I recovered from the late night but then was invited to go out with some of the girls from work. Scott offered to take me and pick me up which I said ok to but only if he could use my car lol - typical!! The night was funny even if some random, very strange bloke decided to talk to us!! Sunday I was up the pub again in the afternoon to watch Chelsea beat liverpool and have a roast dinner, then it was quiz night in the evening!!

Great weekend and then woke up monday with a full blown cough and cold :( Demanded oral antibiotics from the hospital and went up to clinic on tuesday. Lung function and weight had stayed the same - 46kg and 26% - but I ended up crying as i am so fed up. Been out of hospital 2 weeks and have a cold again...i have been trying so hard since coming out of hospital and I havent had the chance to build up any strength or lung function before I get knocked back again. I think I know part of the problem and my Dr and a few other people have told me the same so I think I know what I have to do but I dont really want to...will let u know more in my next post.

x Lots of love x

x Home, new car and uni results!! x

Im home!! Yay!!
3 weeks in hospital altogether but im feeling back to my 'normal' self again! Had to have another line put in after my last post but it had to be a small line as it was a small vein!! I kind of said yes to having a port - really dont want one but i dont have a choice anymore - its gotta be done!! Im nervous already and its not going to be fitted until about november!! My weight stayed stable while i was in and my lung function went up a little to 28% but i am determined to get it in the 30's!!

Since getting home on Tuesday to a lovely dinner of spagetti and meatballs (yumyumyum) I have been quite busy actually even though I should have been resting - typical me!! Wednesday I had another bloody appointment at the hospital so was back there for a bone scan and will get results in 3 weeks but my bones feel fine thanks lol...and had to arrange to have a few b12 injections at the doctors as they started me on them in hospital so i had to finish the course...and then came thursday....drumrole....

I got my new car finally!!! WWWWoooooohooooo!! I love it and want to live in it and drive around all day - so if anyone wants a lift :) Its a black ford fiesta. Went to halfords aswell to customise the inside with pinkness obviously!! Apparently i am not allowed to go too over the top as Scott is on the insurance and he doesnt appreciate the lovely colour as much as me :(

Finally got my car sorted on Friday as i needed it done before i went into hospital was feeling too ill and looked like a scarecrow for most of my admission lol...i am now pleased to say i look human again :) Oooooo - results are not final yet but i checked on the uni website and my results are in and i did really well and 2 of my results were only 2 marks away from a 1st!! I feel quite proud of myself (if i do say so) as I got no help from the tutors because I had extra time and when i emailed them i got 1 sentance replys and they were too busy to see me, and alot of the work was done whilst in hospital or ill....so its a big achievement (and relief) for me too!! Just waiting for them to add up all the results to see what my final degree will be...argh!!

Am now looking forward to my first weekend and 1st full week out of hosp...what will i do??? hmm

x Lots of love x

x Stressful times but home is in sight x

Finally feeling better :)
Home is scheduled for tuesday and from then on the hard work to strengthen my lungs begins...i need to get my lung function up as its getting frustrating and slightly scary now!!!
Since my last post i have managed to come off my oxygen after 2 weeks and got rid of all the crap from my lungs which took lots of coughing, pain and alot of painkillers!!! Had to have a new line put in as my vein blocked up and died on me, took a few painful trys to find another vein but i now have one in....thank goodness....hope it lasts till the i.vs finish!!

Because of the failing veins and the fact that I am running out, talk of having a portacath has begun and I am actually pooping myself :( I am facing up to the fact that I need one and i do believe it will be easier and less stressful but its just the fact of having an operation and knowing how sore it will be after!! Anyway i dont wanna speak too much about that now as its making me feel sick already!

Just also want to mention a little about Vickys funeral which was on friday 11th september. Well its easy to say that it was one of the most heartbreaking days of my life so far. Not just because i was upset but it was so horrible seeing people that are normally strong, be just as upset as me. I wouldnt have missed it for the world so I was there with tubes and my oxygen and millions of tissues. The actual thing was lovely and a fitting tribute to an amazing girl but i cried from beginning to end. There was actaully one point in the day where i let a certain thought creep into my head but managed to quickly push it out again...just looking at everyone looking at me with the oxygen and stuff i started to think...am i next?? Silly thing i know but i couldnt help it.

Hopefully by my next post i will be home sleeping in my own bed and getting ready to work as hard as i can to make myself better...lets hope it works!!

x Lots of love x

x Bad infection x

How fed up am I??

Back in hospital again since tuesday...cant even be bothered to write much as i have no energy and am sleeping alot of time. Tuesday night I didnt sleep at all and then at 4am i called for a nurse as i was fed up of struggling and my sats had dropped to 85% and my heart was racing. They put me on oxygen and kept the sats monitor on me but then by 7am my temp was up to 38.5 and i cant even remember what was happening. The next day i slept most of the day and mum stayed with me...i was put on a fluid drip which helped my temp go down and then Lance took LOADS of blood and then I went back to sleep. Since then, I have been so sore and on painkillers cause of coughing allday and there is so much crap on my chest but its really thick so is hard to bring up.

Friday i had a blood gas done which frigging hurts!! They put deep heat cream on your earlobe and leave it so all the blood comes to the surface then she cut my ear with something that looked like a razorblade and stuck some little straw in the opening and filled it up with blood...how fun!! It showed the oxygen in my blood was low so i have to keep the oxygen on for now :(

Everyone keeps telling me to rest but i find it hard - i just hate being ill and having to admit that i am ill - stubborn moo lol. Today (sunday) is the first day i have felt a little better and ordered some pink GHD straighteners for myself YAY!!

Will update with more next week with hopefully better news and a clearer chest :)

x Lots of love x

x R.I.P Vicky x

Im only just able to start writing this as I have been too upset to even think about things but I have to do it as I owe it to my girly.

On Sunday 23rd August 2009 at 9.30pm, Vicky lost her long and hard battle with Cystic Fibrosis. She was in hospital since November 2008 and never made it home. In the end, it all got too much for her, she had lost lots of weight and her body was finally too weak to cope. The little glimmer of good news is that at the end she didnt suffer and passed away peacefully and quickly with her family by her side.

x Me (looking highly rough) and Vicky visiting me in hospital x

Lance my CF nurse came round to tell me the news first thing on Monday morning so that I didnt find out another way, which I thank him for soooo much. It was horrible seeing him so upset too.

I just want to remember some of the great times we have had together which I will never forget. Vicky, who is going to help me cause havoc on Mulberry ward now and wind up Lance, Jen (the dietitian) and all the nurses...you used to get me in trouble when I came to your room and then we heard the high heels of Dr Baker and I had to attempt to hide or walk quickly back to my room so we didnt get shouted at for cross-infection :) At night-time, it was like having a sleep-over, I would bring down my snacks and magazines and drip and wheel everything down to see you and the nurses often joined us if it was quiet. What am I going to do now when Im admitted - im dreading it so much.

Always trying not to laugh with each other or the coughing fits would start. From the moment I met u, I knew you were special, you were loved by everyone, even though your mouth would many times get you in trouble :) Such a strong little girl who never gave up until you really could take no more. That was so hard for me to see you in such a state but I had to stay strong for you and keep you smiling but inside I was crying. We never did get to do the day trip to Southend or go out in our police fancy dress outfits (still cant look at your facebook picture).

I cant tell you how much I will miss you but I will keep your spirit and memory alive on Mulberry, I owe you that much. The one thing I am glad of is that you are finally out of pain. I know you were scared at the end, I still have the emails, all your texts, cards and letters. I know you have been reunited with Aaron, Lewis and many of the other friends that you lost and missed so much. I dont know what else I can say as there is too much to write but you know how much I love you and always will - just wish we had that bit more time.

V.I.P's forever

x Always in my heart x Love you forever x Gone too soon x

x Praying for you girly x

Not much has happened this week really since my last post. Booked my car in for a service as its making some strange noises so that will be taken in bright and early tomorrow morning :)

My lovely friend Anna has been admitted to hospital yet again and is now in intensive care and been ventilated. She is struggling alot even though she is on the highest amount of oxygen possible. She has had a few fits and her heart has stopped and now has septacemia but she is a fighter and will get through this like she did before. Im not going to lie though as im sooooo worried as its hard to bring CF sufferers round from being ventilated due to the strain on their lungs. Shes such a brave and strong person so im just taking it day by day and waiting for her to send me that little text message saying 'hello' again.

My chest and cough has been abit better which is good and im due to start the steriods tomorrow (should have started already but the shitty pharmacy always cause problems!!) so hopefully it will help blast my chest better!!

Sorry my post is not brilliant but I needed to update. The only good bit of news is that I got my application form for my graduation which is on the 21st October and i dont want to go - im toooo scared and embarrassed!! Ive got to order my cap and gown which has a hood and everything -because im so small, im going to look like something out of Harry Potter!!

x Lots of love x

x New car and steriods ordered!! x

Woooooooooohooooooooooooo for 2 reasons!!

The first bit of news is that after 3 months of waiting I finally got my disability letter on monday and they had granted me the high rate again (which was obvious) but that meant I could order my new car!! I rang straight up and booked an appointment for today (tuesday) and have just got home and it will be here by the end of september....not quick enough for an impatient moo like me but I will have to deal with it. I have gone for the new ford fiesta in black...luvly!!
This spured me on yesterday to clean out my car which took bloody ages as it was a mess and I had to keep sitting down cause I was knackered....anyway, 2 coughing fits and 1 banged head later and I had finished and went for a nap lol :)

The second good bit of news is my weight is up to 47.3kg!! Yay!! Really pleased with how I look now - I no longer look 'ill' or skinny but still got to get upto 50kg.

Now for the shitty news:
My lung function went back down to 25% - however I have been on the cipro for nearly a week because of these coughing fits (which have got abit better) and now I have a course of steriods to take as my breathing is poo basically.
Im also really worried about my 2 girls - anna and Vicky (both have CF too). Both are in HDU (high dependancy unit) but I found out today that hopefully Vicky will move back to the ward soon but anna was fitted with a chest drain today after being rushed back in last night....both are really scared, which is to be expected, but im also scared for them...both have been through soooo much...nearly 10 months since Vicky has slept in her own bed and anna has had to deal with soooo much over this last year....sending all my love and hugs to them both xxx

Will updated with more ramblings soon but nothing is planned for the next few days other than more eating and exercise...fun fun fun

x Lots of love x