Thursday, 10 October 2013

Is it ok to want more?

Living with cystic fibrosis I always thought as a child and teenager I would be ready to die when death came. That I would be tired of the fight for life and ready to role over and let death happen. How naive I was. Me and my best friend Lou were on our way back from London yesterday and while we were driving along we started to talk about my transplant, as I often do at the moment. It's my way of unpicking at the seems of life, rummaging through the memory's, deciphering the codes in my head left from the trauma of it all. Because when your told your dying, when your so poorly you can barely stay awake, your brain starts to loose pieces of information along the way. It's like it decides what it can deal with and starts to throw out all the other stuff until you are back on the road to recovery and then you start to find all these lost memory's.

Memory's such as ringing my nan and telling her I wasn't going to get a second transplant and I wasn't going to make it. Nothing can prepare you for that conversation, not even your delusions as a teen that when death came you would be ready. Starting to relive those memory's, it's so painful, so raw, it's like going through them for the first time because each time you remember something else and it's all new again, the pain slices through you and the tears sweep my face.

I can only just remember the howling cry of my brother, even as I write about it, it feels so fresh so new and I want to reach Into my memory and wrap my arms around him And tell him how it all turns out ok.

I still don't remember all those conversations I made to so many of my close friends and family that day. I wonder if they will ever come back, part of me hopes they will stay hidden. Am I ever ready to deal with these moments of pain. There are still things I cannot remember from my first transplant and i am sure if they were to come back to me they wouldn't benefit me in anyway, they are hidden some where in the deep fog of protection, possibly just dropped out of my brain forever never to be found.

There is something else I have learnt from this experience, not only am I not ready to die but I'm finally ready to live. Now this may sound confusing for everyone, iv never shied away from life or walked away from an experience to be had but iv never thought I wanted to live to be old, joked about the fact I don't want wrinkles and simply thought that 50, 60 or 80 sounds to old. Sorry for those who are that age, but being young those ages do sound so old to me. Until the penny dropped, stu said to me today about sorting out his retirement fund. My reaction was to well up, I want to be there! I want to be with him when he retires, sending him off down the golf club in the day while I natter away to my friend Lou and go to the spa or some retirement like leisurely thing!

This may sound selfish of me, it does to me. It sounds like I'm simply wanting to much and I should just be grateful for every day I get, god I promise you I am. Sometimes though I catch myself wanting more and hoping I never have to relive those conversations with my friends, not just in my memory's but in real life.

- Posted using BlogPress from my iPad


  1. There's absolutely nothing wrong or 'selfish' about wanting to live a long and healthy life. Never feel bad about wanting to make it to old age with your husband. And you never know medical advancements happen all the time, it could happen. I know i'll be keeping my finger crossed for you!

  2. This blog is such a personal insight into your deepest thoughts Kirsty. Thank you for sharing it. You continue to inspire and remind us all that life is so precious. Sending you best wishes for your future. x

  3. I can relate to this a little. I have been lucky enough to get kayledeco and for be it;s like a second chance. I always thought i would get to 30 and that would be it, so i had to cram alot in before 30! but with ailing health it was getting harder and harder to do anything. Now im thinking about pensions and weddings in my future. Hopefully soon all people with CF will know 'getting old' and can plan for futures.

  4. Your love of life is truly inspirational and a reminder to us all when we get overwhelmed that we should appreciate every moment x

  5. Of course it is ok to want more, even just for the seemingly selfish idea of wanting to know what happens to our friends and family. Wanting to be a part of their time here on earth. I have a very different diagnosis than you, I was healthy until a few years ago when I was told I might very well die within the next 6 months to 5 years. I have ALS. Or MND as I think its called in England (Im swedish). I thought just like you, that when the time comes, I will be ready. I even thought that when the times comes, I would want death and welcome it. A life as a vegetable without even the ability to breath on my own wasnt something I thought of with joy you might say. But now, two years later as I feel life running out of me as breathing becomes harder and harder, saying "I love you" to my husband isnt easy because my tongue and mouth muscles are dying, I think of the life I might have hooked up to a ventilator. And I find that even though Im scared stiff by the thought, I want it! I want to live more! I want to see my husband one more time, I want to feel his lips on my lips one more time, I want to tell my friends one more time what they mean to me, I want to see one more bad movie and laugh, I want to meet one more new person and learn just one more thing. Im 27 years old and not finished by a long shot.

    So yes, I truly feel that it is ok to want more.

  6. Love how open you are. You write what you feel. Congrats on owning a home and good luck with everything in your future.
    a fellow CFer,

  7. Congrats on everything you have achieved in such a short time.

    I am sure you are already aware of this, but please do keep talking, keep talking to anyone and everyone about everything that is going through your mind. Yse any help you can to work through it. I blocked my thoughts out for a couple of years and refused to face it. It comes back to bite, for me in the form of flashbacks and PTSD. Its not going to go away over night, nor in single conversations, but you can make peace with it and come out the other side stronger still.

  8. Nothing wrong with that at all my dear, in fact that sounds beautiful.
    and if anyone can do it, my money would be on you.
    maybe not 60 or 80. But 50 may be within reach. Advances are happening everyday. Just keep positive!

  9. As a fellow CFer this is something I've always asked myself and the answer for me is YES. Why shouldn't we want more considering how utterly horrific our lives are from day one.

    Literally every moment of them is filled with dealing with things and subjects that mere mortals would run and hide away from so In my opinion we DESERVE more as we often make the most of the tragic hand we're dealt with a smile on our faces because we don't know any other way.

    Keep up the good work Kirstie, you're doing amazingly well. Much love. x

  10. I think that the fact that you always want more helped you to win with your disease. I wish you a wonderful life full of joy and peace