To a prosperous year....

Sorry for lack of updating. I had a very nice Christmas. I saw all my family over Christmas and boxing day including my two little nephews and lots of good food and lovely presents, Im a very lucky girl.
My best friend managed to get home from hospital for the big day and i spent Christmas evening with her, it was so good to see her after so long!
I hope you all had a good one too.

Wishing everyone a happy healthy 2008, where all your dreams come true.
xxx

Just to.....

Wish everyone a very merry Christmas, however you're spending it have an amazing time and enjoy yourselves.

I would also like to say to all those people having a not so great Christmas for whatever reason, all my thoughts are with you. Keep strong.
Especially thinking about all those in hospital and my friend Robyns family tonight, you will never be forgotten sweetheart. xxxx

surprise....

As I said in a previous entry, you never know when things can happen, big or small, that can change your outlook.
Yesterday afternoon our post arrived. I love getting post and am usually pretty impatient for it to turn up. I started opening the statements, christamas cards and letters that had arrived and got to a letter that I didnt recognise as anyone I knew or had been expecting. When I opened it I found a beautifully written letter telling me that I had been nominated, by a friend who has Cf, for a treat. The letter was from a charity called the Chloe Janet Ball Trust, it was set up by a family who lost their daughter Chloe to Cf. They spoke of her with tremendous love and fondness and said that the charity aimed to give fellow sufferers of this disease gifts of money to enjoy a day doing something they love to do, a chance to forget about health worries and to have fun. I am allowed to choose what I would like to spend it on, whether it be a nice meal, a stay in a hotel, a theatre trip or just take aways, manicures, and smaller treats to brighten my day. They closed the letter by wishing me lots of love and although they dont know me, will be wishing me well. All they asked in return was for me to raise a glass in Chloes memory.
To say I was completely touched, even gobsmacked by this is an understatement. I cannot believe the generousity of both Emma who nominated me, Thank you so much again hun, and the wonderful people who set up the charity and sent me this gift. Their utter courage and kindness that, although they tragically lost someone so dear to them, they still want to improve others lives and in their words, "give a little sunshine" is in short, beyond amazing. They are amazing people and Chloe must have been too, to inspire them in her name.

I dont know how I will spend the money yet, but when I'm sure about it I will of course blog all about it. I have been feeling sad lately and life has been getting me down but this has pulled me up again. I felt that after Christmas there would not be much to look forward to, except being stuck at home or worse in hospital. Now I have days to plan something special, not even that ground breaking, but small treats to look forward to. I could have done this off my own back but it makes it so much more special to know that I'm being given this as a gift from people who care.
I'm truly humbled and just want to say thank you, it means more than I can put into words.
xxx
Chloe Janet Ball Trust http://www.cjbtrust.org.uk/

isolated

Still feeling a bit down at the moment. I've had plenty to do these last couple of days, had some orders from people at work for extra decorations, so finished all of those last night, also made all my christmas cards for family. Today was lovely as two of the teachers from where I used to work came round for lunch, it was really great to see them and hear all their news. They couldn't stay long as they only get an hour lunch break but it was still lovely to have them here.
Unfortunately ive had a few rubbish bits of news this week. Firstly my best friend is ill so I won't be able to see her before xmas plus I hate to think of her being unwell. We are due to go to my aunts for xmas night but they have flu going round so its unlikely I'll risk going now. I'm probably going to be stuck indoors all over xmas and I just feeling a bit fed up with it at the moment. The shops are too crowded to get around, and I haven't been out properly for ages. Everyday merges into one when you do the same each day, I feel quite lonely at the moment... xxx

As I said in a previous entry, today it is a year since I was admitted to hospital, put on oxygen, and my decline became most apparent. I think it was one of the most scary experiences of my life. I have to admit I felt quite sad when I woke up this morning. Imagining setting off for work as normal this time last year, not knowing that by the end of the day I'd be in hospital, was quite hard to think about. However, while I was so poorly something else big was happening back home.....
My sister was expecting her first baby and went into labour while my mum and I were on our way into hospital. It was terrible for my mum to have two of her girls going through so much. My sister had her partner with her and was in contact with us at the hospital. To say the very least the birth was pretty complicated and it was awful to get dribs and drabs of information through but later that evening a beautiful healthy baby boy was born.
Today it was his first birthday and it was a pleasure to see my little nephew laughing, smiling and playing with his many birthday gifts. He, and my other little nephew are a true blessing to our family and have changed our lives immeasurably.
It made me think how lucky I was too be at home, with my famly, and celebrating my nephews birthday. Things may not be perfect with me, I'd prefer not to be on oxygen,not to use a wheelchair to go out and not to need to be on the transplant list, but things are still pretty good if you sit and think about it.
It also affirms something I've always known, and cling to now. Things can change just like that. For better or worse, they can change the next second, the next instant.
Today I look back on a bad day healthwise last year, but who knows what will happen next? I could be looking back sometime in the future with my life changed again, beyond all recognition.
I think thats pretty amazing really. xxx

"Even the darkest night will end and the sun will rise"

sorry....but not for long

I've had a boring couple of days really, hence lack of blogging. Everyone here is rushing about at work, christmas shopping, busy busy busy. My body is not up to rushing though so I just watch everyone else. It's funny isn't it, that at this time of year most people would kill for a rest or to sit down all day, whereas I would love the chance to rush about for once.
I absolutely LOVE christmas but am finding it hard to fully feel a part of everything this year.
Dont get me wrong, the house looks great and I've got almost all my presents, in fact i could probably get away with what i've already got, and I do still love christmas but i suppose things are just a bit different now. Being on the transplant list does seem to have changed my outlook and moods. I'm either high as a kite or down in the dumps a lot of the time, its hard to get balance. Plus everything is so different being on the list, doing all my shopping online, not being able to make cards or wrap presents for too long or I'm all aches and pains, reflecting on the year.
However, I am a lucky girl in many ways. Last year I spent alot of time too ill to care how everywhere looked and then in hospital which was awful only escaping two days before the big day. So I am in a much better position than I was then, I'm thankful to be at home, reasonably well, taking an interest in everything and with my family. Lots of people aren't in as good a position as me.
Today I'm going to wrap some presents, watch a christmas dvd, make some more cards, sing-a-long to some xmas songs and enjoy being at home.

I'm feeling more christmassy already!
xxx

Star struck!

Firstly, I'm still not getting many comments from you all so please leave me one to reassure me you're out there!

I had a nice day on Sunday. Nearly finished my christmas shopping now so thats good. The internet is a godsend for me to avoid lugging oxygen round busy shops! Just got a couple of little bits left, should only be one more trip.
It was my nan's birthday so I went out for a nice roast dinner in the evening and although it was a bit of a rough day for me tummy wise I still had a good time.
The definate highlight of my day however came earlier in the day. A friend of my mums (who she hasn't seen in a while), knows how much I love musicals. A girl in her family has recently made her debut in a hit West end show, and she completely surprised me by turning up with a program which she signed for me and then sat for a chat about all aspects of show life. She absolutely made my day, and I was so touched that she had taken time out on her day off, even though she had never met me before. It was a true pleasure and just shows how kind people are.
Today I will be doing some reading for my course. I was over the moon when I got my essay result, to see I got a B! Real sense of achievement. Then this afternoon my reflexologist is coming round to do my feet and have a chat. I can't wait as it's always good to see her and reflexology is so relaxing. Ive tried quite a few alternative therapies over the years but aromatherapy, reflexology and hypnotherapy have all been invaluable to me.
So thats my day! I hope everyone else has a good one.

5 months today

It is 5 months today since I was put on the transplant list and started the countdown for new lungs. I've been aware every month since July how long I've been waiting and realise only too well that most people in my position wait a lot longer (often 1 1/2 years +). Yet it never fails to surprise me, that its been only a matter of months it feels much much longer.

I was thinking about this last week and, looking back on the last few years I realised that I'd been going down slowly for quite a while now. I suppose it is easier to see in hindsight and I've always been good at hiding how much I struggle from other people.

I can now remember various situations where I worried about how far I'd have to walk or if there would be steps to climb when I went out, I just do it too more of an extenet now. The last year of 6th form was when I noticed this most. I used to miss registration so i could take my time getting to my next lesson without having to rush or be breathless in front of people. On my 10 min walk home I would often sit on peoples walls to catch my breath and fall in my front door at the end. Don't get me wrong, I've always known I did these things but can see it more clearly now than before. Its strange.
Next Saturday will also mark an anniversary of sorts for me. It will be one year since I fell very ill on my way to work one morning and had to be taken to hospital. To me, this was a real turning point. I had been REALLY struggling for a long time but the drs had been trying various things to help me out and I figured they would hit on something soon that would do the trick. Nothing was working and it was a very stressful time when I worried all the time and felt mentally exhausted. I didn't use oxygen or a wheelchair and would have been royally offended if you'd suggested I should!

On that day however I'd been ill for weeks but was enjoying my last week of work before xmas break. On my way to work I collapsed from being so breathless and a teacher brought me home. We drove up to my hospital in London and I was so scared I didn't know what would happen to me.
I hate needles and knew I'd need intra venous drugs but I can honestly say I just wanted anything to make me feel better. I asked for oxygen and a wheelchair because I just couldn't manage to get to the ward.

It was an awful time but I wasn't actually in that long and once I was stablised I got home for xmas. But it was a turning point for me in alot of ways. I realised I needed to do what was neccessary to help me, oxygen, wheelchair, etc,that I was tired of struggling so hard and that I never wanted to feel like that again. It was also the time I realised transplant would be the next step. Something had changed physically inside me, I'd gone down a level in my health and this was the new norm.
It must be hard for people who haven't experienced something similar to understand but its as though everything you've known is different.

It made me realise what a difference a day can make for better or worse and the day I get my transplant will be the day it could change for the better again.

Success

Yesterday was quite a good day really. Firstly I managed to finish reading this weeks study notes for my course. I better explain about that, for those of you who don't know, I volunteered for a few years at my old primary school before applying for a paid postition and being employed as a teaching assistant. I loved the job but sadly had to give it up after a year because of my health. When I gave my notice I decided that I would need something else to occupy me or else I would go mad.
I have always wanted to get a degree but uni was never an option with my health in recent years. I thought, what better time to do something constructive and looked into the open university. I'm now on my first of 6 courses that make up a degree. Its hard work but can be done mainly from home so is ideal for me. Yesterday I registered my place for my second course which starts beginning of Feb. It means an overlap of both courses for a couple of months but at least its not a big gap doing nothing which was my other option. I foresee alot of work ahead!
I mentioned in my last blog that I liked craft work. Now is probably a good time to mention I also adore Christmas!(hence why my tree has been up since mid november...)
Anyway, in July I ordered a 130 wooden letters....(bear with me)
I drilled, painted, glittered,decorated and varnished each one and hung them on silver or gold thread. The idea being that I would sell them at the primary school christmas bazaar, mum's could buy the intials of their children to hang on the christmas tree. Unfortunately I was advised against selling them myself as there are so many bugs and nasties going round, I'd be at risk of catching something. So my mum and nan, went to sell them for me. To my suprise they sold fantastically and I only had 9 left over! I made nearly £100 so well worth doing!
I have to admit they looked really good and I enjoyed doing them but I'm glad they're done now! I got quite manic towards the end trying to get them finished!
Had a nice night in with my best friend who is training to be a hairdresser. We got a takeaway and she trimmed and blow dryed my hair for me. She is brilliant!
So a good day in all really.
Today I must start making my Christmas cards and write a list of outstanding presents...... a nice glass of wine this evening I think and a christmas DVD.
Hope everyone is doing well.
xxxx
Ps Thanks for the emails and messages you sent about my first blog entry.Feel free to write a comment if you liked it,I've now altered it so you don't need to have your own blog or anything to be able to publish comments :)

New Blog

Hello everyone,

I've been thinking about starting a blog for a while now, but couldn't decide if it was for me or not. A friend recently started her own blog and encouraged me to do the same... so here I am! I don't know if I'll post very often but thought it might be good to get down some of the feelings and thoughts I have while waiting on the list and if I am lucky enough to get that all important call, an excellent reminder of ust how far I've come.

I suppose I should start by introducing myself. My name is Tor, and I'm 20. I was born with the genetic condition Cystic Fibrosis which has now taken its toll on my lungs, leaving me dependant on oxygen 24/7, and makes everyday tasks very difficult for me. After a slow decline in lung function over the last couple of years, I was approached about transplant early this year. I underwent 2 weeks of tests assessing me mentally and physically and was eventually placed on the waiting list for a double lung transplant on the 9th July 2007.

There is no saying how long I will wait for organs and sadly due to the chronic lack of donors only 50% of people on the list will recieve that life changing call before its too late.

While being on the list is a huge whirlwind of scary, confusing emotions from one day to the next, it is also the chance of my life improving to a level I have only dreamed of and that is worth the risks for me. I have so many things I want to acomplish yet!!!

So thats my situation at the moment but theres more to me than my illness. My big passion in life is musical theatre, and my fave show is The Phantom of the Opera, I adore it and my ultimate wish is to star in it one day. I love to sing and after my transplant want to train properly as an actress.
I have a wonderful family, my mum is amazing she helps me so much on so many levels. I can honestly say that in all i have gone through I've never faced a second of it without her by my side. She is my angel. I also have my dad, 2 sisters and 2 beautiful nephews who make my life complete.

I'm rubbish at sports (always have been) like art and crafts and am always pottering at something. I have a few good friends who know me very well, love to go out for dinner at various locals, quiet drinks at the pub, singing (ALL the time), watching tv and flms, shopping and the colour pink.
Oh and I have zero sense of direction, utterly hopeless.

So thats me really..... hope that wasn't too boring!

I'll post again soon.
xxx