Wednesday, 20 May 2015


It's time to complete a life goal. Iv had it in my mind for so long now the idea that I have nearly missed my opportunity so many time, means that this year I put it at the top of my list! I am becoming a competitor in the pole world.

Thursday night I sat as I uploaded my video entry, filled in the forms and transferred the entry fee. It's been done. Now I have to wait till the end of next week to find out if I get to compete at the Miss Pole Dance Uk semi pro on 28th of June. In all honestly I don't know if I get through, the competitions high! If I do, will I win? I highly doubt that! But I am committed, I'm in it to winit, it's not about show boating to others or being better then anyone else, it's about beating myself, tricking my body into reaching new heights and telling it that ultimately Cf may try to kick my ass nearly every day but I am still what I was ment to be, I am still a dancer.

As I delve into my training more and add in new aspects, I can feel my body knowing what it has always known but never been able to do, lines become sharper, moves flow freely as I start to unlock my true potential. I know it's in there, I know I can do it, it's so hard to explain but I am becoming everything I was born to be, born to do. I was not born to spend my life dying, but set it alight as I twist and bend into beautiful shapes.

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Monday, 6 April 2015

Kirstie: My New Lungs Documentary

Following on from love on the transplant list here's a documentary by gloustershire universitys Charlotte Miller Kirstie: My New Lungs  Please share and help spread awareness for Cyctic fibrosis and Organ Donation.

I really like this doc, I feel it shows me honestly. I hope you like it to.

Sunday, 22 February 2015

Fitness, fun and flight

I feel I should have something compelling to say. I guess what I do have to say is compelling to me. I am well, I am alive, I am alive more then I have ever been! I can breathe, I am grateful.

I am currently studying to become a personal trainer, yep that's right, I have thrown myself further into the fitness world and I am loving it. I qualified my gym qualification last week with flying colours and this week I have started on my course work for my Pt qualification. I always thought I wasn't a natural studier, but I have been so enthralled by it all. The thought of picking up my books to study excites me and I wonder what I will learn today. I want to research more than they tell me and I am already looking at different course to expand my knowledge after this one. I want to do nutrition, sports massage, i signed up to do my aerial hoop qualification on the 18th and 19th of march.

None of this means I don't want to be a pole instructor it just means I want to be a better one and also spread my wings into the fitness world and help people become healthier, happier people. I want to help cfers and post transplant patients rehabilitate eventually and help them transition in to a normal healthier life style that I know so many have struggled with including myself. I still battle with Kirstie the underweight cfer who was allowed to eat what she wants, now I'm Kirstie the fit poler who actually needs to watch what she eats and fuel her body ready for the next thing.

I feel so emerged In life and improving myself that simple worries are fading away and my grief although still very tangible is somewhere I can live with it. my grief for Emily, for the so many cfers who have died recently and for liana who's funeral I attend Thursday.

It also seems that as I am so busy now I do not have time for my newly appointed role as a trustee for live life give life and decided that as I cannot give it the attention it deserves to go back to my old role as advocate while I spend my time doing things I always wanted to do, Im taking the chance to enter some pole, comps this year after training very hard. I hope I get the chance to comp and maybe even come away with a title.

Any way blogosphere I will leave you with the feeling of elation as I continue to look forward to life.


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Wednesday, 7 January 2015

The world is a little less sparkly - Emily Thackeray

The first time I met Emily was when her smiley face looked round my hospital room door. I was still struggling to do anything for myself and feeling like I would never gain full independence back. I croaked at her 'you never told me it was this hard' and with that knowing look shes said 'I know' the look ment more then anything to me it ment that someone in this whole place understood just how hard it was and suddenly I felt like maybe I could get through this. Emily had a very magical feeling about her, a understanding and a way to reach you when no one else could. She didn't enter my room because she had a cold and didn't want to give it to me but from the door It was like she was hugging my heart and instantly soothing my troubled soul.

From then on Emily and I became great friends. Although Emily had been through transplant and all the horrendous things that came with it she was just normal in a very extraordinary way. She was like me very chatty and we could talk about the most deepest things to the most girly, pink and sparkly things. We often wowed each other with our blondnes and constantly argued who was more of a drama queen in our black sense of humour to laugh over our health issues.

In true style Emily was there every week often more than once bringing sparkle back to my hospital room through out my chronic rejection. She would bring Sophia her little girl who had been born through surrogacy at only a few months old to cradle in my arms next to me on the bed, while she badgered me about what I'd eaten. She was a true mummy in every sense of the word, taken on the temporary role to mother me when I needed it. We talked about my decline and about maybe having a second transplant. She asked me how I felt if I stabilised where I was and was to well for transplant but to ill to live my life as I wanted. I said I'd be ok with that. The next week I could tell Em thought I was now very ill and in need of that second transplant. See Em being there was the most unselfish thing ever because she had chronic rejection to only she was stable at the time, but every time she saw my face it was a reminder that she might be going through the same very soon. But she continued to come. I even rang her to say my goodbyes when it seemed all else had failed. I can't remember the conversation Iv blocked it out because they were All to painful. When I got my second transplant she was still there making sure I recovered.

I text her a few weeks later to say thank you for being such a rock and that I loved her for being so amazing.

When Emily was there I knew she had rejection but I couldn't imagine her being ill like me, in denile I told myself she would be fine. She wasn't. Em started radiation therapy, but she did stabalise. Thats when she caught pneumonia i knew she was bad. I went and spent a whole day with her and sat and pampered her. I rubbed her feet as she feel asleep and I let her sleep. She needed it. Later I painted her face as a violinist played ave Maria and she closed her eyes taking in the music and relaxing. We filled our bellys that night with curry and I knew that it might be the last time I saw her but I refused to believe she would ever leave us. We talked of what was to come, that she knew she had a fight on her hands and she knew she would give it her all for Sophia. No questions about that she gave it everything.

Things did get better from there but it wasn't long till she was rushed back in and I hung on to the end of the phone while she text me telling me she was scared. She even managed a text whilst on ecmo. I told her I knew she could do it and I wished I was wish her to hold her hand. She text me the last message I would get from her that it was mega extensive but she would give it her all. She hung on until a new set of lungs came and she fought many complications but there were just to many. She passed away on the 28th December. My heart feels heavy and I ache to speak to my friend, there were things that only em knows and I was holding on to tell her when she was awake. Now I can't. My soul feels so sad that my friend is gone and it hurts to know Sophia will not see her again. Her family will keep Emily's memory alive for Sophia and I vow to keep her memory alive in live life give life the charity Emily co- founded and I am now a trustee for. At the moment I am on IVs and awaiting admission to Harefield I know being there will be extremly hard as It was the last place I saw her. All I can say for now is I am grateful to learn so much from my dear friend, she reminded me of who I am and to always stay true to that. She reminded me to always stay kind, to live life and to keep smiling. I have so many other things she taught me and cannot be more grateful for my extraordinary friend.

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Friday, 17 October 2014

Full house

My life has moved on. I feel like I have begun the greatest chapter of my life. My health is the best it has been, there will always be something but to me it's nothing. It's just life. Every night I curl up in my bed there is more life in this body then there ever has been. More life in this house...

My husband, my little Kia (best friend and pup) and my nephew.

My nephew Charlie (15) now lives with us. I have always tried to take a active role as auntie in my many nieces and nephews lives as much as possible. Although that wasn't possible for so long. Now I feel I may have all the time in the world to give. It was such a big decision for us as a family but ultimately a great decision.

I love having him here and helping him through one of the most important years of his schooling. I hope me and Stuart can guide him through his decisions and help him find his way in the world. It's such a precious gift being able to help mould someone. To parent them. A gift we never thought we would have, but gifts don't always come in the most conventional ways.

Who knows what his life will hold but I hope the most important lesson I can teach him is to live life to the full, as if today is the last day of your life but dream as though you will live forever.

Left to right. My sister Kerrie, my niece Kaylee (13) my nephew Reece (5) me and Charlie

Just one of the ways my life is changing for good...

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Wednesday, 14 May 2014


When you know something already, it's obvious to you for so long but Then when someone confirms that and suddenly it's like your really hearing it for the first time. The meaning sinks in and suddenly a little bit of sadness fills your heart.

My ovaries are very nearly completely shut down, I am going through menopause.

I never wanted kids, I always knew that with cf it's not really a possibility. I was always to ill to even think that there would be a time in my life that they would fit in. Knowing I would die young I didn't want to have a child to leave it through its childhood. Having a transplant I suppose that can change things slightly, you know you have a new life line, there's the option of surrogacy, you now have energy to look after a child, run around and play games but still I know my time on this earth is not a normal life span and chronic rejection could set in at any time, proved to me last year when I was diagnosed at approximately 2 years post my first transplant and declined rapidly. Yes I was so lucky to get my 2nd transplant but I still don't know how long this will last and therefor wouldn't be willing to risk having a child to become ill and leave my husband caring for me whilst I die and a baby. Don't get me wrong I have seen my friends post transplant have children and I'm so happy and proud of them it's was some calling deep within for them, there maternal instinct, for me I just don't have enough of that to have a baby with all those risks.

But still sometimes I think if I had a normal life, I would have a child. If I were normal I could wait till I was in my 30ies when I have lived my youth for me and followed my dreams of a successful career, one that I would be well into by now because I wouldn't have had all these other set backs in life. I could then have a child and devote the rest of my life to them.

So that is that, I am not that girl in a normal life and never will be, not that I don't love my life I really do. If by some mirical I get to lead a long life and live into my 50ies then I will look back and feel a pang of regret that I never got to have a child and now all options have forever been taken away. It's final. I have no choice I cannot change my mind and have a child.

The sadness I felt when the menopause was confirmed wasn't just for the child I would never have, there was a whole mix of emotions, suddenly I realise that part of my youth has gone and that's not just mentally, not like just a feeling, physically part of my youth has been taken away from me. My mother had a early menopause, but by early I mean 40ies hers by all accounts seemed quit simple, she complained and still does of hot flushes. So the thought of menopause didn't really frighten me, but then I started researching and realised a lot of my current problems seem to comedown to this. A huge sense of fatigue, that was contributed to by other health factors that are now sorted but the fatigue is still there, tho lessened slightly. It makes me feel so old. It makes me feel less feminine, I am now officially unable to do the thing that makes us women, have children.

Then there's the mood changes, I haven't really told many people but I guess now is as good as time as any. I am on anti depressants. I started them a few weeks ago due to depression and anxiety. There are things that have upset me which I don't want to go into and I guess with my hormones being out of whack it's lead me to feel paralysed inside, a sense of dragging and all momentum has gone. I'm fixated on a few things and really need to be free of them finally, events in my life as well as old demons I have carried around for years. My anxiety comes on suddenly for no reason, I'll just be sitting there and feel overwhelmed, trapped like I can't get out, I don't know what I'm trying to get out of, my own mind, my own body. It's a overwhelming horrid feeling that I can only remember feeling in itu with my first transplant and when I have been on extremely high doses of prednisalone which cause anxiety. The antidepressant are helping but I still lack the motivation I had before, I just feel stuck. Which makes me feel even sadder because I so want to be out enjoying every moment as I do love my life, just right now I feel I've almost forgot how to.

There are many other side affects or symptoms of menopause, which I am experiencing but don't really wish to talk about. It seems that some women sail through, I am not one of those.

I started this menopause at 23, the reason was radiation therapy. I'm starting HRT soon which should help with these symptoms although it may not help one of them. I don't think many people will get how I feel going through menopause, I'm sure a few will think great no periods. I guess I would have thought that before going through it to.

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Saturday, 5 April 2014

Leaving next

So for a while iv been struggling on and off with fatigue, unfortunately more so lately then not. I'm still trying to keep up my gym routine but the last two weeks iv struggled more then ever. I struggle everyday I go to work. I feel faint and weak. It all came to a head when I had a cold after another cold work just got harder and harder and despite my store manager doing everything he could to help. There just seemed no way I could carry on my job and fulfil my role that I'm suppose to do and there seemed to be no other way the job could accommodate me any more then it had.

I have a chest infection currently and will most probably be starting Ivs if I'm no better by Monday.

So still trying to go on despite bad fatigue, which made me collapse on Thursday, I went off to work this morning and realised I just couldn't do it anymore. I have a lot of time off and never feel better, the anxiety of turning up to work, knowing it would make me feel awful. I just couldn't do it. So I sat down with my store manager and told him I'de like to hand in my notice. Not something I had done lightly. It had been on my mind for a long time and I just couldn't keep going.

I don't plan to sit around, I still want to work and earn my way in the world and I'm hoping I will be able to start teaching pole again soon, something I can do when I'm feeling up to it and I only have to teach an hour at a time then I can break and rest. I can organise my lessons around me. I can't sit around, it's just not me, but hopefully some time off will give me chance to get whatever's making me so tired sorted. The doctors think it's ebv. A virus that you can't get rid of but can be dampened down. I'm also not resigned to feeling like this forever and will get my energy back not matter what.

So my last day at work is next Saturday. I'm so grateful to my store manager and all he did to try to help. So I look forward to teaching I pole again and also I'm still working toward my public speaking and tv presenting career which is taking off with my first paid speaking job booked in!

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