Thursday, 26 May 2011

5 years together

Me and my Scottings have been together now for 5 years. We celebrated by going to Scotts favourite place (the cinema) and then my favourite place (a restaurant) haha!! We didnt do pressies but just got each other cards. When I got to scotts house he had stuck balloons all up the stairs which had 5 on them. Awwwwww lol xx Im sure you all know by now - through this blog and through facebook - how much I love him. He looks after me, understands me, makes me laugh so much and we hardly ever argue. We have no need to, and thats the honest truth. He is not only my boyfriend but my best friend and I tell him everything and know he will be there with me always. xx

As of today, I am needle free!! Finally after 3 weeks of iv's I dont have to worry about the bloody tube hanging from my chest and can have a proper shower. BEST. FEELING. EVER. My chest is fine but I still use my oxygen more than I would like. Unfortunatly, I think its going to be the norm now and its going to be with me until my new shiny pretty lungs come along. My appetite is back and my weight has gone up since i started iv's. Im starting a trial for a different overnight feed which has 2 calories per ml instead of 1.5 calories that im now on. That means i will be able to fit in an extra 500 calories overnight, going from 1500 - 2000 calories. Will start that tonight....lets hope it agrees with me!

Ive been quite busy actually since the weekend. I introduced Scott to the wonder shop that is Ikea. I love that shop and love flatpack furniture even more. I think that should be my job lol. He got a wardrobe and chest of drawers for his room. I got pushed round perched on the edge of the trolley which was great. We worked great as a team: i sat on the sofa with the tools, screws and instructions and basically told Scott what to do!! Thats good teamwork ;)
I had lots of places to go to on Tuesday; doctors, gym (to cancel the membership as im just not well enough to go), chemist... scott had finished early so he came with me as he needed to sort stuff out too. Yesterday I got my hair done finally too!! Feels sooooo much better - have gone shorter and blonder.

Im going to finish the blog with the best news this week friend Chantelle got her transplant call on Monday and it went ahead. She only waited 8 weeks which is brilliant. Its only been a few days but all her chest drains are out and shes been helped into a chair! Thats such good progress already and i really hope she continues to do well. I was so excited and really nervous all day monday and constantly checking for updates. I dont know why it affected me so much. Obviously because she is my friend but i think alot of it was because of my own situation.

I knew Chantelle before she needed a transplant and we worked together to get our weight up. Her lung function dropped quite quickly and she decided to start transplant proceedings around xmas. So from starting the meetings at her hospital at xmas to now is less than half a year and she already has new lungs...its all was so quick and just reminded me that it could be me going on the list in june and then it could be anytime!!

x Lots of love x

Thursday, 19 May 2011

Chelsea charity match

I will start with the health side of things. Im feeling alright at the moment. Im still on iv's as i agreed to have a 3rd week just to get my chest as clear as possible. My appetite is back and im not coughing lots so this extra week will hopefully keep me going for a little while. Im still abit breathless so am on and off the oxygen but am able to be off it for most of the day now. I had my needle changed yesterday, which stung like a bastard due to the numbing cream not working and being rubbed with an alcohol wipe over the hole the last needle came out of. Ouchie!!!

Last week was Scotty's birthday and we went for a nice meal and cinema with our friends Sirin and Carlton. Just before his bday, me and mum had a few hours to pick up a few little bits for him to open. Because I still wasnt great and because we only had a couple of hours to get around Bluewater, my mum suggested i go in a wheelchair. I have only ever been in a wheelchair when in hospital, and am so stubborn, I would rather push myself to the absolute limit than give in. However, I needed to go and knew I wouldnt make it round so I agreed and we borrowed a wheelchair from a family friend. It broke my heart to have to be pushed round in it, im only 22 for god sake, but it did make the trip so much easier.

I got alot of stares and i can understand why. Other than being abit pale and skinny, i dont look ill and you wouldnt know, i didnt have oxygen on, i was moving about and my legs were moving (so they knew i could walk), and im young, so people must just wonder why im in a wheelchair. I wish it was just because i was mucking around and being lazy!! We did laugh alot though. Mum bashed the chair on many aisles and got me caught on various things, and then didnt know what to do with me when she went to pay for things so often dumped me somewhere in the shop haha!! I was impressed with the card i got Scott:

Tuesday finally came and it was an early start having to leave the house at 7am. For those who dont know, CF patients dont do early mornings!! We have sooo much to do before leaving the house and we also need our sleep lol. It was the CF Trust charity football match at Chelsea football club. The team was made up of people that have a link with CF and celebrities who support the charity, and we would be playing against the members of parliament team. There were 6 of us that went; me, danny, mum, dad, dad's partner Lisa and my friend Steph. It took us 2 hours to get to Stamford bridge in rush hour traffic but we made it. The match was very funny and everyone got to play 40 minutes in total on the pitch. My little bro scored a hatrick!!! The match ended 6-4 to us - wahoo!!

After the match we went to the presentation. There were a few speeches and then everyone went up to receive their little trophys. We were sitting at our table talking about the trophy and pictures when danny got called back up and given another trophy as he was voted 'man of the match'. We then went to the chelsea store and got the new chelsea shirt and made our way home. It was a long day but it couldnt have gone any better. The amount raised is still being counted and brought in but it was estimated to be about £30,000 which is great for such a small event. I was so proud of danny and i know everyone else was too.

I will upload the pics once ive collected them all as 3 different cameras were used, but here is a few...

Oh...I just remembered....I got my court date. Its on the 18th June. Lets fight!!

x Lots of love x

Tuesday, 10 May 2011

Documentary on BBC3

I havent done much at all since starting these ivs which is a good and bad thing really. Good because i should be resting and taking it easy so my body can recover and not keep knackering myself out, but bad because my head wants to do lots of things and i also keep getting a dead bum!!

I have been using my portable oxygen when driving and when i went up Scotts and the pub. It doesnt bother me wearing it infront of people, although its not the greatest fashion accessory, but i often worry about how the people around me feel about me wearing it. My dad tries to kind of keep me in one area of the pub for example. Its not that he is embarassed, I just think that he is trying to protect me but i find myself getting snappy at him, but again, thats because of my own feelings. I worry how scott and my family feel having to see me with it on. We all know my lungs are a big piece of crap but its just a physical reminder at how bad they really are. I start to wonder how long it will be until I am on oxygen alot more or even 24/7. Hopefully I can get over this infection and keep the oxygen just for overnight use again. My mind always goes into overdrive when im not well.

I got an email on thursday from a producer from a company that does documentaries for the big channels like ITV, BBC and channel 4. They came across my blog and want to get me involved in a documentary on young people and transplants. It will be shown on BBC3 at 9pm in October. At first i wasnt sure whether to do it or not because I am scared i will say the wrong thing and come across in the wrong way and plus, I sound like a child on cameras!!! Lots of people have supported me and urged me to go for it so I got in touch and they are coming round for a chat on friday afternoon....argh!!! Im looking forward to this weekend as its scottings birthday so I hope it goes well.

x Lots of love x

Wednesday, 4 May 2011

Oxygen - check!

Bugger chest had a big old flip out and im now on iv's, possible daytime feeds and oxygen. It got worse and worse over the long bank holiday weekend so i warned Lance that they would be needed so when i went to clinic on tuesday, i was put straight on them. Didnt do lung function as my sats were dropped to in the 70's (whoops!!), my weight dropped a kg so i need to keep an eye on that and i wasnt allowed home until i was given a portable oxygen concentrator as its obviously dangerous driving and being out and about with that low sats. Oh well, I feel shitty but once these ivs kick in then i will be on the up again!

Earlier on tuesday, i had the dentist. Harefield wanted me to see the dentist before my 3 day assesment (which is exactly a month away - argh!!) in order to have healthy teeth. To have a transplant they want you to have good teeth as these are a big infection risk. I have never had a filling before and have only had my teeth whitened at the front when i was in secondary school. This was because the shock my body had at being born with an illness, my enamal didnt form as well and plus all the antibiotics didnt help. Thankfully my teeth just needed a little clean up and that was it, yay!! The only part of my body that is healthy i think lol!!

Despite feeling highly crap over the weekend i had some nice highlights actually. Friday was the royal wedding and i watched most of it and loved it. I burst into tears at a few moments and was, of course, David Beckham hunting - soooo handsome!! ;) Im allowed to say how much i love beckham because Scott loves him too! Friday night, me and Scott went nandos and cinema to see Thor. It was a brilliant film and because we had lots of time in nandos and before the film, we got to talk alot and i really enjoyed it, a proper date night. Another little highlight for me was at the pub on saturday. I got up there for the football at 5pm and my daddy was up there!! I havent spoke about him much in my blog as its not my place to share all his business, but he hasnt been well and so shut himself away....he has finished treatment and is slowly improving and so to see him back in the pub and making the effort to come out was great.

This week is relaxing and concentrating on getting abit better so that I have a bit more to say that i have done in my next blog lol.

x Lots of love x