Wednesday 29 February 2012

Lung Power, Letter, Doc in america

So Sunday morning I drove to London after 3hours sleep. Yes I’m not sleeping very well, I think it’s down to not wanting to miss a second of what’s going on. Tonight I can't sleep for 2 reasons, 1 my doc is about to air in America under the title Breathless bride Dying to Live and the other is I have badly injured my knee at my first ever gymnastics class. Anyway ill come back to that. So I drove to London for a photo shoot for LLTGL with the lovely Emily Thackeray, lots of fun jumping around a field all day.

No the picture we will be using but one they let me have as it was quit cool and funny.

So anyway from there I drove to my Dads in preparation for clinic at harefield the next day. I was very nervous and was extremely worried I would be keep in. My lung function had dropped by 13% due to a nasty cold that actually had me stuck in bed for a whole day, the first time since leaving harefield straight after TX.

Anyway off I went, I had only brought one pair of knickers I was that determined not to stay in. Got the and did lung function and it was my highest ever!!!! 94% and 104% that’s a 7% increase and 12% increase on what was suppose to be my base line. The previous month I was told it wasn't going to go up anymore, which was fine as it was fab anyway. Now it’s amazing. I’m so happy about it. Beaming I went to leave. On the way out I saw Brian, he’s a doctor I hadn't seen since ITU, lovely guy with a slight Irish accent. I tried to wind him up in my more awake chirpier moments. There was an occasion when he told me he had to look in my eyes at which I replied 'is it because there so beautiful' he replied 'ohhh no it because there’s something wrong with them' he didn't get that I was obviously joking and the whole team of nurse and doctors stood there wetting there selves. He clicked and said that yes I had lovely eyes. Anyway I got to chat with him, I wondered if he would recognise me and he said of course he did, but he was surprised I recognised him! He wasn't the one who had changed lol. We talked over my ITU time, he said he had never seen someone as sick as me and hasn't since. That it would be very hard to walk in to my room when I was so depressed. I said it was hard to have to spend so much time with myself, I couldn't bare how I felt and wished I could have left the room.

We also talked about the time when I was trying to tell everyone I had had enough, He said there would have been a discussion if they had known I was saying that, I’m soooo glad they didn't know. Just imagine n a parallel world they did and they turned the machines off. Maybe somewhere I don't exist anymore. Have you ever wondered about parallel your’s maybe my depression was also me getting over loosing a part of me in another world. Sounds silly but I always wonder. I’m glad I’m in this world anyway and that I am ME.
It was great talking to him, I love being able to show people how I am now and that it partly because of them, that must be amazing for them, right. Knowing you changed someone’s life that much. That is huge. So I thanked him, shock his hand and left with a great fat smile on my face.

The letter, I finally did it, I handed it in. Somewhere my donor’s family could be reading it. I hope it says everything I need to and everything I want to convey. I hope it has just the right amount about how I’m doing with out rubbing it in there face. I hope it shows I feel there lose to. I think about them every day and hope they are OK. I hope my donor is safe in heaven, with all the other angels. I wonder if they will reply. A part of me would like them to, but only if it’s right for them of course. I don't want to be the cause of pain for them. I just want them to be OK. It really saddens me thinking of there lose, of my donor. I have the wish to just fix it, but I can't. It’s deeply frustrating.

I think I will leave the blog there. It would feel wrong to talk about anything else now.

Monday 27 February 2012

A few thoughts

Ok so I wanted to write a bit about who I actually am. Some of My views on things.

Internet perception

Well I guess Its really hard to truly understand someone if you have never meet them, to gauge there full personality, the reasoning behind who they are and how they mean things when they say them. I thing sometimes my Internet personality can be taken completely wrong. I am blonde hair blue eyes, I like things that are faminin, make up, hair, nails. What does this equal out to. People thinking I am unintelligent, I am most definitely not. I have alot of view on things, I have alot of Ideas. I don't speak in a unintelligent voice, neither am I posh. The question is do women have to change there image to be taken seriously? Should I cave in to society's demand for intelligent people to be unattractive or uncaring of there image. No. I refuse to, I refuse to get ride of my blonde hair and not add make up to my face. I enjoy taking time and effort in these things. The thing that needs to change is not me, its society's oppressive view, many people will sit there and think that i am wrong that society does not do this to our intelligent or attractive women, but it does if only sub consciously. I read an article today about vajazzaling. Some thing I will never quit understand myself, but each to there own, but the question was can you be a feminist and still vajazzel a d one women said no you can't. As why would any one subject there self to sticking gravel down there pants. But surely if a women found that attractive then by doing it there surely liberating themselves by doing something they want to do, surely going against what you want to do is being oppressed and there for none feminist!

I never claim to be a feminist, I don't stand in the streets screaming women's rights, but my very feminist friend said yes I was as i am an independent female, meaning I run my own business, I do not rely on my husband and I do very much believe women are in fact equals. I guess I'm just not a extremist.

Also another perception I wanted to talk about Is that of Pole Dancers. Now If been very forgiving with he words I have used as so are others. People think I am a pole dancer and I guess I am if you think of it in the sense of yes I dance on a pole, but when people say this they don't mean it in the way I mean it. The mean I am a stripper, or pole dancing instructor which means I teach stripping and I am neither. I am a Fitness Pole Dancing instructor. They are very different things. I have or will never take my clothes off for money, If people want to that is up to them, but it interests me in absolutely no way what so ever. I use Pole dancing in a artistic, gymnastic, acrobatic, performance, dance. I in no way shimmy or shake, I string long sequences of gravity defying moves together in a perfectly seamless dance. I have muscles that these unintelligible people could never dream of or in fact know exist.

One person even had the cheek to say 'So, she knew she was living on borrowed time and chose to do something as meaningless as a pole dance instructor with her life? I'd do something more worthwhile than work with strippers ' Here was my response

What a constructive comment. How ignorant of you, let along presumptuous and rude. How dare you judge me, a judgement that is indeed completely incorrect. I in no way teach strippers. I am a fitness pole dancing instructor, qualified and insured. Fitness pole dancing is a art form to be compared to gymnastics and the aerial arts. It requires huge skill and unbelievable muscle tone. I have muscles in places you knew never existed. I not only teach fitness pole dancing, but i am studying my exercise to music course to teach other fitness class's, i run a great deal of campaigns in England for organ donation with Live Life Then Give Life charity as an advocate for them. I also run fund raising events and many media stunts. I believe I have lived my life to the fullest and have done things you will never be able to comprehend at the age of only 22. When I meet my maker there will be no question of whether my life has been meaningful. I know I have saved 1000 if not millions of lives with my campaigning. What have you done that's so great, that leads you to look down your nose with your preconceived ideas?
This morning I woke up knowing I have made a difference, Surely you must be amazing your self to make such a statement? No?

I know this reply could come across as arrogant, but I do know that 1000 of people have signed up after reading or watching my story, so I guess I'm going to go with correct rather than arrogant. Part of me has almost stopped caring what people think, but I am a people pleaser, I have a part of me that has to be liked by people, more in the way of I don't like people misconstruing who I am and the things I say, but a few criticisms that seem to be based on the same idea have had me thinking do I actually care anymore. Perhaps I am not meant to be liked, but I am still making a difference and that is all that matters. Sometime the people who change the world for the better weren't always the first in the popularity contest?

So what am I trying to say? I guess the overall message is I am not thick and I'm not a stripper and yes I do like to be liked but if I'm not well tough.


Tuesday 21 February 2012

Hair lose

Ok so im going to talk about my hair.

Its fallen out, alot, at first I got clip in extentions and they are ok but a bit of a pain to put in and out so i went for weft tape in ones, possibly the only ones that owuldnt pull out my hair anymore. Well they just didn't hold in my hair and three days later there practically gone. I have  now decided that im going to go back to the clippins.

Its cost me a fair bit of money to say the least and yesterday I was a nervous reck about it all. I contemplated chopping it all off and going short like i used to but the thought devestated me. I have spent 2years trying to grow it only to cut  it off because its so thin. Dont get me wrong I liked it short, but I want to keep my long hair now. I also want to say my hair dresses has been a star and tryed to help me as much as possible.

I know you probably think Im over exagerating. Im not Its getting bad, really bad. Im worried I may even end up bold. I rung my mum to talk to her yesterday and ended up in hysterics on the phone. She can round to comfort me but every time I thought about it I ended up in a huge fit of tears.

Devestated isn't the word. Its all because of my immuno suppresant Tacrolimus. Now in the grand scheme of things I know its nothing. My life for my hair. But It is. Its devestating for any women to lose there hair. Mine is what I always described as my crowning glorie. I love my hair, ever time I empty the plug whole is the only time I really see it anymore.

My mum said if it gets any worse Im going to have to go to someone maybe about a wig as its really tearing into me and upsetting me. I have that little hair that I know most of the time you will see the clips, but im just going to have to try and blend them as much as I can.

I did thing about changing to ciclosporin but I don't think I would deal well with waxing my face. As that causes extra hair growth. I did ask the doctors and they said Its just a side affect and that it will get better but for now I have to watch my hair go down the drain. Litrally.

I will keep you up to date.

Sunday 19 February 2012

Goals, Achivements and the missing factor

So I have started t learn aerial hoop, as you will see its one of the things on my list of things to do post transplant. here are some pictures.

I did two hours yesterday and felt really happy with what I learnt, I wasn't able to do one move due to my abdominal not being quite strong enough yet. I was a little bit annoyed with this, I know I'm probably stronger in my deltoids, biceps, triceps, lats and pecs but i didn't realise my abdominal were lacking slightly, I felt like they were really strong, but its good as I now know what i have to work on, so I will get working hard on them to build them up. My instructor Helen, I meet her two years ago when I tried aerial silks, I remember my exact lung function that day 22% I remember how out of breath I was, I wasn't on oxygen at this point but felt a desperate need for it, My muscles achieved all the things i wanted them to but at a serious price, I was so ill that night, I had a temperature and felt just really sick. Helen said she was very worried teaching me then, I was so slim and looked soooo ill. She noted how fit and well I was looking and said I was very fit now, I feel so happy about this, I really feel I'm getting to where I want to be post TX. I'm achieving all the things Iv wanted to do and I'm enjoying life.

I remember a couple months post TX i was sitting around thinking my life's not going anywhere fast enough, Well it wasn't suppose to at that point, I'm always trying to run before I can walk but I'm feel I'm finally getting there now. My targets will always change, I always move the posts so I'm constantly pushing myself, but this is when I'm most happy. At least I'm on the right path now. I'm achieving the things I was always meant to, becoming the person I always wanted to be.

Its great I'm constantly learning new things about myself, things I was never able to realise before as I simple wasn't able to do things.

I only have one part of my life that feels somewhat empty, friends. I feel very lonely in terms of friends and I don't know if its my fault or not. Am I simply not reaching out enough. I see students all the time and i feel that most have become my friends but I seem to not be socialising with them outside the studio. Also the cf community, I feel like somewhat of an outsider now, that my health withdraws me from that part of my life, that maybe my health is somewhat being waved in there faces. There are only a few cf people that I feel I really connect with now. It feels like now I'm well people think iv forgot, iv forgotten that sick feeling, that feeling of being stuck and restricted, of struggling everyday. I haven't believe me. I remember every day. I still have the night mares.

The other CF friends I use to mix with and socialise with, I can't see anymore as they are a risk to me, I miss them. I really do. I feel like I can't fill my duty as a friend that they did for me when I was sick. I was wheeled to the canteen by my cf friends and they would come over and make me cups of tea, now there quit sick and I can't do anything. There feels like something deeply unfair about that. The kind of person that likes to run around and help.

I'm also currently studying, Yay! I'm doing my ETM exercise to music which means i will be further qualified as an instructor and able to teach other fitness class's, I'm hoping in a couple years time i will be able to develop a teaching programme for aerial art, when I'm good enough at it, so Iv given myself a long time period to achieve this. IMO also now first aid qualified and hoping to be PDC approved (pole dance community)

The valentines day bake sale, I will uploads pics later in the week, but from 2 bake sales Me and my helpers raise £283 :-) a blog on the bake sale to come.

Friday 10 February 2012

Hurtful Hateful People

The yesteday I had a rather nasty comment on my group in facebook. The person implied that I was after fame and getting money for my charity. They said that I was now rubbing my health and happiness in other peoples faces, who weren't going through a good time, that they had even felt sorry for me when I was ill, but implied that now I wasn't ill they weren't interested and felt sorry for my donors family as there has been no mention of them. The person subsequently deleted there self from my page after numerous others responded to the comment. I personally sat back and just thought about it. The comment upset me, not because any of it was true but because someone had set out to be hurtful and unkind, that this person obviously only knows the surface story and has not taken any time into trying to know or understand me.

I'm not going to lie, the attention I have had from the press has been very positive and kind and I have enjoyed that in a sense. Would I go through everything iv gone through just for the attention, certainly not, but it has given me a greater perspective over life and a greater understanding of other peoples misfortunes and suffering, which is why the comment on me rubbing it in peoples faces is so hurtful. The reason I share now is to show people just how good transplant can be, that there is hope after end stage CF or other terminal diseases requiring transplant as the only option. I want people waiting on the list to not lose hope, to hold on and fight till the very end because even then there is a tiny ray of hope that things will turn out good as they did with me. I also want to show people who ain't on the donor register that if they become donor that in the horrific circumstances of there death that perhaps they can help save a life and what a difference that can make.

The comment that 'now I'm asking for money for my charity' well to begin with its not my charity, I'm raising money for various charities that have helped save my life and make it better, I'm doing this because i want them to carry on  delivering the first class help they have provided and carry on saving other peoples lives, I don't want anyone else to suffer the way I did. I don't see how wanting to help people is a bad thing.

They say it as if I'm receiving money out of the things I do, I'm not. I didn't receive any money for the documentary, I receive no money from the news papers, the magazines sometimes contribute money, I have donated these funds to charities in the past and other times it has covered costs for doing them.

The charity ball, so far if anything has cost me personally, I will take my own money out of the funds but otherwise all I receive is the knowledge that some how in some way I might be changing the world for a better place. Is that a bad thing?

The comment that implies this person found it more enjoyable when i was ill, to me, shows that they are obviously in a lot of emotional pain themselves, for that, I feel sorry for them, that they seem to enjoy other peoples pain as a way of feeling better, the signs of a true bully.

Lastly, my Donor, all I can say on this is I feel disgusted that they have even mentioned my donor, It is none of any ones business about my donor. They have no right to even mention them, they do not know how i feel about them, or what I do each day to honour them, there are things in my life that even to me are personal. This is one of them. All I can say if thank you every day and believe me I Do. I have discussed various feelings in this blog before about them, I do not wish to re iterate them. I'm still grieving for them to.

So I felt compelled to write this blog, perhaps the best thing would be to ignore this ignorant and unintelligible person, to not feed the troll so to speak, but I feel affected by what people say and its not so easy to rise above it. Human emotions are a difficult thing and yes I am full of them.

Ill leave you with a few articals about me, one i didn't know was going to be printed and another magazine one. Express and Echo

Pick me up

Lastly I would like to Invite you all to the '2nd Chance Ball' named after this blog.
Please feel free to email me for tickets or enquires, my email is on the poster above.

Also a big thank you to the generous people who have sponsored me so far, 

Im doing a bake sale Sunday and Tuesday to run along side LLTGL Valentines day bake sale, I will blog on how they go.

Thanks for reading.

Wednesday 8 February 2012

Whirl Wind

I though I would just write my errant thoughts down, You know I feel like such a whirl wind at the moment, blink and you'll miss me.

I run around like I'm on fire, My schedule tends to be pretty packed with one thing of another, but if I happen to have a free day I don't just chill out and watch t.v I have this need to bizy myself and fill it. I'm not complaining, I personally find theres nothing wrong with this, but I do wonder where it comes from, my constant need to be moving. To achieve, the drive for life. Its not just been since transplant Ive always been like it. I think before It was the thought that time was running out and that every second had to count, then there was the period of time when I couldn't do anything really but I still tryed to keep bizy with my publicity. Now the fact that I was practically laid up for a year unable to do anything coupled with the fact that I feel the need to prove myself, that I am worthy of this gift, this transplant and finally the superman complex. The feeling that you are super human, because you felt so ill before that now you feel well its amazing, nothing like it and that well if CF couldn't get me then what can?

Saturday 4 February 2012

Treading on toes

Well, I had what I though was a good day, but its turned bitter on me. I have so much I want to do with my business but tied to loyalty's I can't. I'm stuck, restricted. Do I cut the ties and reach for success or do I stay loyal and forever stay in the back ground. I'm not a shrinking violet, I guess everyone knows that, I like to reach for success where ever I can. I push myself to the maximum and try my best to be the best at whatever I do.

People say theres no friends when it comes to business and I guess if you want to be successful thats true, but is it in my nature to stamp on people to come out top? No. So I guess this means I'm stuck in the shadows. Trying to scramble any tiny bit of success I can. This is one of the reasons I wasn't sure if I wanted back in on pole. I love it and but I can't do it how I want. Iv booked my etm and now I'm wondering if theres any point as I'm not even sure of what use it will be to me when I'm stuck in the rut I'm in.

Frustration doesn't even cover it. I'm angry, I'm annoyed, I feel like iv been backed into a corner to battle my own conscience and drive for success.

I guess my conscience has already won.

Some times this is why I wish I lived in a bigger city, where theres room for competition and i don't feel like I'm treading on toes.