Thursday, December 22, 2005

Yet again time has flown by with all sorts of busy-ness taking place. Sarah's fancy dress party was a great success, with some wonderful costumes (one girl coming as the sea which I thought was fab) and I thoroughly enjoyed wafting around in my full satiny dress playing the princess part rather well.

When christmas shopping on monday, I receieved a call from Richard and Judy, to ask if they could feature me the following day. In a matter of hours the camera crew was at my little house, rearranging my furniture and then filming footage that would be used to create a short VT to be shown along side Heather Mills-McCartney's appearance supporting the donor family network.

I watched the R&J show on tuesday night from the comfort of the largest bed I have ever seen, as my man and I went away for a luxury break at a gorgeous hotel which had beauty treatments and a spa, and we thoroughly enjoyed ourselves! Watching myself cry on TV was slightly strange, and weirdly made me cry again (how egotistical!) but I think that it was quite a powerful clip, and if even one person signed up after watching that then it was worth doing! Incidentally you can watch the clip here I believe (if that hyperlink has worked I am in fact a technological genius. Fact.)

Am now off to wrap christmas presents as I really should have finished doing so and havent.

Tuesday, December 13, 2005

It is really quite chilly outside now; the birdbath has remained frozen over for the last few days, much to poor George's dismay (the robin that lives in the garden, yes I have befriended him as he makes the most suitable pet for me by far - if I forget to feed him, he finds food elsewhere!) and I just love the feeling of being snuggled up indoors, with the fire on, looking at the frosty garden!

After promising myself I will have a much more restful week this week, so far I, erm, havent. Yesterday I went christmas shopping as I was beginning to get slightly unnerved at the high number of people who were talking about "last bits and bobs" they had to get when in fact I had yet to even start. However I have now made a good start, and have nearly finished writing all my christmas cards, so they can go in the post tomorrow. YAY!

I went to the costumiers today with my mum as we are going to a party on friday which is "come as something beginning with S". I am absolutely over the moon as I found a sleeping beauty style dress, deep rose pink and white satiny material, which is essentially every little girls dream, and therefore perfect for me! Whilst we were there, a lady approached me and said "excuse me, aren't you that girl off the telly?" (yes her exact words). I found the "off the telly" bit amusing, as you could add up my minutes of airtime on one hand, but it was fun being recognised! The nasal specs and O2 cylinder do give it away some what I suppose. She told me that both her children had phoned and registered as organ donors after watching, which was the highlight of my day. Second to finding a princess dress that is.

Friday, December 09, 2005

Wow, what an insane week!

I have loved it though, it's ages since I have been this busy and I am thriving off it! Saturday the Times article came out, then monday I spoke to the Daily Mirror. Tuesday another journalist came over to interview my mum for one magazine and me for another, and Wednesday was GMTV. Then today a photographer came for the Mirror piece and I had some more questions to answer for the magazine interview. And the highlight of the week being my sparkly shoes made a guest appearance on GMTV because the camera zoomed out to show my O2 cylinder! Woohoo!

So what a week it has been!! The magazine interview was very tough emotionally, as my mums interview was first, and obviously they ask some extremely taxing and probing questions which made her quite upset at points. It is heartbreaking watching my mum cry, I am fiercely protective of her but extremely proud because she did an amazing interview despite finding some of it very hard. But she says she also found it incredibly cathartic, which I do too, and so I think she understands slightly better why I do these things.

I have put a link up to the Times article, for anyone that wants to see it that hasnt already! Hope everyone else has had a simply splendid week...I am looking forward to a good quiet weekend snuggled up in the warm. Oh and lungs have started to comply again and the pain is much better so a big yay for that!

Tuesday, December 06, 2005

Wow, the last few days have been crazy! The times piece came out on Saturday, and I was really pleased with it. Thanks to a fantastic journalist, Hilary Freeman, all the key issues I wanted to raise were clearly put across, and she had used a lot of my own words and writing as well. So a big thank you to her and to the Times for doing that brilliant piece of awareness raising.

I have had an incredible response from it all, and I spoke to the Mirror yesterday, am speaking to a journalist for B magazine tonight, and hopefully an appearance on GMTV tomorrow morning! It is all a bit overwhelming, but I did this with the intention of getting heard, so I am going to take full advantage of my privileged position of being able to speak up about these things while I can. It is all very cathartic for me as well, because whilst it is difficult speaking about my inner most feelings on the matter, it is helping alleviate the feeling of helplessness which accompanies this situation.

I received some really lovely messages and emails from people as well; whenever anyone starts doubting society they should come to me as I have so much proof of the amazing human kindness that is out there.

Health-wise, things are ok, although my chest muscles appear to have gone on strike, and I am getting rather a lot of grief from them in the form of pain and difficulty breathing. The physio came out to see me this morning, and my stats look ok, so I we aren't taking any action just yet. Hopefully my lungs will get over their little strop and start complying again soon!

Saturday, December 03, 2005

The workings of my mind...

Ok in a moment of genius (honest) I think it has just come to me to be able to explain my mental attitude towards life. People are ALWAYS talking to me in awe about the way I view and handle things, and I genuinely believe that there is nothing special about me, it is just how I naturally see things. To me, it is a logical perspective. And I think I have found a good analogy.

You are walking along a road, in the mountains (lets say) trying to get to your destination. Suddenly, there is an avalanche, and in front of your eyes, the rocks come crashing down and the path is blocked by debris. You are shocked, shaken, and pretty scared. And now the route you were about to take is blocked.

Now here is where you have a choice. You can stand and look at that route, curse the fact you can no longer go down it, scream at it, hurtle abuse at it, and generally put a lot of energy into things which don’t actually help you advance further on your journey.

What I tend to do is sit down, have a good cry (after all what you have just been through was pretty scary!) and then stand up, turn round, and start walking in a different direction, to find a way around it. Yes it wasn’t the way I had planned to go at first, but that route is no longer an option. Surely to sit and focus on the route that could have been would just waste more time and energy? And I have places to go! So I go another way. To me this is logical. I can’t sit and focus on what I cant do or what could have been or what I wish I could be doing, because it’s just not how my brain works! I hope it makes more sense now.

I do find it slightly amusing that it is 8am on a Saturday morning and I am up because my lungs decided they did not like breathing in a horizontal position any more, and that is when I decide to try and explain the inner most workings of my mind!

Think I will go and make a cup of tea. Have a good day!!

Monday, November 28, 2005

Hurrah for another successful fundraiser!

Yesterday was the Faure's Requiem workshop, in which we invited people to come along and learn it in a day, then perform it in the evening, with all money raised from both the concert and the workshop going to the CF Trust.

It was a fantastic day; the atmosphere was just wonderful, with everyone having a really good time plus knowing they were doing it for a charitable cause. I always find that though, with all charity events I have been to - the general atmosphere is always so positive and warm. The strongest example of this was the Hydro active women's challenge in Hyde Park this summer, where the commaradarie between the runners was so lovely. Ooh this whole post is a big group hug moment I'm afraid!

I have spent the whole of today in bed resting up and trying to allow my poor old lungs to catch up a bit. I always liken my lungs to a really clapped out old car that's about to fail its next MOT, so for all you motor enthusiasts just imagine you have driven said car up the M1 and that is how angry and exhausted my lungs are! No matter though, as I have timetabled in today and tomorrow to lie in bed and give them some TLC, and yesterday was so worth it for the sheer fun of it, not to mention the good cause.

YAY! Am back off to bed, with a mug of hot choc!

Wednesday, November 23, 2005

Hurrah for muchly busy-ness!!

Have had a good and productive few days, which always makes me feel better! Mind you I say that but there isnt really anything of significance to report from monday, its just I got lots of "bits" done; you know all those tiny annoying jobs which sit and niggle at you if you leave them incomplete! Paid various bills, managed to do a load of washing (all by myself baby yeah - its remarkable how much like a superhero doing a menial task can make you feel!) and then in the afternoon popped back to the highschool to watch the year 11's performance. They were very good, and very sweet, coming up to me afterwards to ask what I thought of it all. It gives me a really nice "alive" feeling being in the school, like being completely submerged in a warm bath or something, I think it is being immersed in humanity and society and all its loud bubbling variety....OK am going off on one, but when you sit at home on your own a lot, you really do take notice and soak it all in when you get the chance!

Then yesterday the photographer from the Times came, and that was a little bit scary but mostly great fun! Am a natural poser (I wont bother saying otherwise as I will only be ferociously corrected!) and the photographer was really nice, so I quite enjoyed the whole photo session. Hopefully he got some good ones and the article should be out in the next few weeks! eeek!

Sunday, November 20, 2005

I've had another really "itchy" day today; that's the only way I can describe it, where I am just restless and fidgety, more internally than physically though. Essentially I have spent most of the day swaying between a nice cuddly mood and one where i wish to devour anyone's head who dares speak to me. let's hope sanity has returned by tomorrow eh Well at least as much as we can normally expect from me!!It usually happens when I have been stuck in the house for too long, so it didnt really make sense today, as I have had a lovely weekend. My old flatmate from Uni came down to stay, which was hugely fun! We just laugh and laugh about the most stupid things, I love her because she's one of these people that can see humour in a seemingly mundane or unamusing situation.

However today has been strange, I keep having mood swings like sudden spurts of desperation to get away, escape for a couple of days. I suspect that's it really, the knowledge that I cant just escape for a couple of days should I feel the need is what makes it seem all the more frustrating. Then again, who in the real world does have the luxury of running off on holiday whenever they feel like it?! Note to self: try and remember that actually not everyone else is constantly taking mini-breaks left right and centre!

Thursday, November 17, 2005

I had the interview with the Times journalist today. I think it went well, we talked for 2 1/2 hours (oh dear god I talk to much) and so hopefully I managed to get some good stuff in there! The article should be out within the next few weeks, in the saturday section, so fingers crossed its a good one! Photographer coming next week and everything.....argh!

Me and my man are off christmas shopping tonight (YAY) along with Denzel (my wheelchair) and Margery (my O2 cylinder - dont ask me why but personifying my medical equipment has become a bit of a trait with me, I think it makes it all less foreboding). It's Debenhams last day of their sale, and so they are open till midnight. Although knowing me and knowing where we are going it will turn into an "OOH there's a H&M let's just pop in there...." shop and all thought of presents for others and christmas etc will rapidly dissolve. Am muchly excited at prospect of choosing all new christmas lights and decorations for the first time in our little house! Maybe November is a little early to be doing this but hey ho!

Tuesday, November 15, 2005

A few weeks ago I was in a very profound and thoughtful mood and i sat down at the computer, and just started writing. It was a sort of stream of conciousness really, a rather cathartic exercise i must admit, but just me trying to get down on paper some of my main feelings about my current situation and waiting for transplant. As it was initially intended for my eyes only it is very very honest and blunt about the whole situation.

Following talks with the PR people at the CF trust about how they wanted to draw attention to transplants and organ donation, i sent them this piece incase it might be of some use in raising awareness. Anyway yesterday i got a call telling me that they had had a huge response from journalists and selected the Times to do a feature on it all in their section Body&Soul!

It's all a bit nervewracking really - obviously i am not stupid and i sent it with the intention of it being published or brought out into the media circuit, as that is how you raise awareness. however this is a new thing for me, as its not just an interview (i dont think) it includes something i have actually written myself. And as anyone who actually reads this blog will know, my ability to write coherently comes and goes...!!

The interview is this week so i suspect the feature will be out within the next few weeks. I have shown both my parents my piece and they were both extremely complimentary, which is a huge relief, as that's all that matters really. And even if it makes just one person pick up the phone and register as an organ donor, then it was worth doing. Am now heading back to bed to do my IVs (which incidentally stands for Introvenous antibiotics, as I dont think i explained that before) where it is warm, as I can feel icicles forming on my extremities!

Thursday, November 10, 2005

An entry two days in a row?! Shocking!

Today I am mostly being known as master of all household appliances, and housewife/independant woman of the year. I called the ovenmendingman out (oh dear this is a poor start, am not even sure of his title, though I suspect engineer may be more accurate) as on lighting the oven, and then watching the flame, it would suddenly jump up to a large roaring flame, which I felt sure was wrong. Even when i turned the dial thingie down, the flame stayed strong and vicious. So I was adult and compitent and called for someone to come and inspect it. Unfortunately it turns out that is completely normal, as the oven works on a thermostat, not just a direct flame to nob-turning relationship, and therefore, there is actually nothing wrong with said oven at all.

I managed to retain my dignity by thanking him and highlighting the large quantities of oxygen cylinders in the house, saying you can never be too careful. So it does have its uses after all then.

I feel better after that confession of incapability! Have a good day, todays outing involves a trip to the post office (woo) and then back home to snuggle in the warm. I love that feeling, when you have been out in the cold and biting wind, and then you return home to a warm cosy house. Stay smiley!

Wednesday, November 09, 2005

Already it's wednesday and the week is flying by!

I have had a fairly proactive day today, sorting out bits and bobs over the phone and even putting on a load of washing! It is so rediculously frustrating at times - I am sure that deep down I am a natural housewife (honest) but the physical toll from carrying out such a small task is rediculous.

So as a bribe to rest up, I have bought myself Monty Python's Life of Brian to veg out infront of! However I have a newly installed determination to get out and about a bit more, as I dont think all this being stuck inside is good for me. It is making me behave and feel a bit like a caged animal! I talked it over with a friend of mine who suggested getting out once a day, even if it is just to drive around the block, or sit in a cafe to drink a coffee. And I think he's so right, it is vital for your sanity to keep some sort of regular life going, even when it's so much easier to just curl up and hibernate day after day. Lugging my O2 cylinder around makes things a little more tricky but I am sure I can brainstorm a few ideas of little escape activities to break up the day!

Saturday, November 05, 2005

Happy Bonfire Night!

Hoping to go and see the local firework display tonight; I love fireworks, there is something slightly magical about them, plus the whole tradition of bonfire night holds strong childhood memories for me of being wrapped up warm on a freezing cold night, and being right up close to the bonfire so that you can feel the heat on your face.

Spent all yesterday at the hospital (deep unadulterated joy) as I was starting IVs and the whole process takes hours. I came away with only one IV drug, as apparently I am currently resistant to almost everything. Which makes it slightly trickier to find stuff to prescribe me!

I met with one of the transplant surgeons whilst I was there for a brief discussion on the transplant procedure itself, as well as getting "measured up" - yes literally, tape measure and all - for my new lungs. It was a rather surreal thing to have done, and if I closed my eyes I could imagine I was being fitted for something far more exciting like a wedding dress or something similarly spectacular!

Have a good weekend all, stay smiley!

Thursday, November 03, 2005

Today i will mostly be....resting!

Had a brilliant day playing the roll of teacher yesterday, not for my own amusment no, but as i went to my old school and did supply teaching for the day! it was a fantastic experience, despite the fact i have always sworn i would never teach highschool kids; not only are they scary but they are nearly all taller than me, including the year 7s. However the children were brilliant, all of them were. What i love about kids is how straight down the line they are; if they want to know something, they ask. And then there's no hidden agenda. So with my oxygen, a few asked why i was wearing it, one asked if the cylinder was heavy (!) and that was about it. So much easier than dealing with adults who meet me for the first time, and you can practically read the "dont mention the war" syndrome in their eyes.

So the day was great, but consequently i am completely exhausted now and my chest feels like i have been in a car crash, and i have the lung function of a small rodent. I must have shouted more than i thought yesterday...! Was so totally worth it for the mental stimulation though; i love working with children, its definitely something i will persue post transplant. When my plans for becoming a famous and successful TV presenter fall through that is.

Tuesday, November 01, 2005

Well, this is my first ever post on my brand new I guess I should start with the basics!

I am 21 years old and currently awaiting a double lung transplant, needed due to Cystic Fibrosis wreaking havoc in my lungs. Due to having to keep myself as well as possible (the wait for a transplant can be a long one; 18 months on average for lungs) I am currently "resting" having finished my degree this summer, and not being well enough to work. Plus it is important to keep myself as well as possible, as 50% of people die before a set of lungs come through. So I am trying to use my time as proactively as possible, and am a woman with a mission (look out) to raise as much awareness about CF and and organ donation as possible. This blog being one of my weapons.

That will do for a first entry I think...for more info on me and CF check out my website!