Where did the sparkle go?

This goes back to the days before I had a blog, I have many notes like this, updates I would write On My Facebook. I wrote this before I was listed, when my life was slipping away form me, it was just before I asked to be assessed for transplant. In a bad place, desperately clinging on to a life that had already decided I did not belong.

21/12/10

When Your ill its quite easy to lose sight of everything you've become consumed in self pity, anger and most defiantly jealousy. These things slip in so quietly you dont even know there there until your a miserable bitch and you feel like a drain on those you love.

Iv lost my sparkle, Its most defently gone. I dont know when, but i miss it so. I had a brief re encounter with it the other week when stu took me out to dinner and it was great, i felt happy shiney and like people were seeing me for me instead of the sick ill person iv become.

How do i get it back? Well i really don't know, my first awnser to anyone else would be to get rid of what ever has made you lose your sparkle, but i have no escape from my situation, Im trapped in my body which is sucking all my sparkle away. What makes me so angry about my situation is i try and try to make myself better, do all my treatment, religiously. But there is no escape, they only minimise symptons slightly im still really ill and its not making me better. God damn it. Jelousy comes in watching others running around having so much fun, the snow to me has been like a weight around my chest, i cant go anywhere do andything, Im stuck. Im stuck most of the time anyway as i feel to ill to go anywhere but now im truley stuck. The jealousy is there all the time with everything, im the smallest of gestures and how people take them for granted, say walking your dog, cleaning your home. I simply cannot do these things, i do them with the upmost effort and struggle. There is my jelousy. Its so ugly, I dont wish to take things away form people, but i cannot help the jelousy creep in. Lastly self pity, I hate that most. I hate that i pity myself, i pity the situation im in that is all i can say on that one.

I need to try and bring back the positivity, the light that i felt i used to shine, I will. It will come. I just dont know how yet.

I finish this, note not wanting to sound sad, I feel positive and happy, Iv written it down, its gone from my head so i can stop dwelling and move on to making it happen.

I have to say I didn't feel like this the whole time I was listed, but there were so many shadows where I was it was easy to fall In to one and get lost. Some say the sparkle was still there, I guess it was just so hard to see In
the shadows. I certainly didn't feel like a shining light.


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Did you know, I never used to want a transplant

Blog request from Clive Hayward 'did you ever think of say no to transplant?'

I hear a lot of CF people telling me they don't want a transplant, it's not for them, or they wouldn't have one if it came down to it. You know I actually never wanted a transplant.

I always knew that with cf you could have a transplant, I don't know how I first knew it, but it's just one of those things you grow up knowing, like I grew up knowing people with cf didn't live as long as other people. Then one day my mum told me my friend Debbie was going on the transplant list. I was only 10. I know I have written about Debbie in the past and have probably told you all similar things in a round about way, but I'm going to go into the whole decision to have a transplant a bit more.

See Debbie got her new lungs, but it was to late, she didn't make it. She was 16 & I was 10. That was my first loss to cf and it was a big one, it was in the days of cf holidays, we mixed in clinic, ran around and played together, she looked after me and I adored her. I thought she was basically the best thing since sliced bread. Well it turned out she was a whole lot more amazing than slice bread could ever fantasise about being. Losing Debbie I instantly decided I didn't want transplant, I can't really see my reasoning, transplant was a ray of hope but to me all I could see was death and false hope. I was scared of it and all it ment, I was scared of my own mortality and by some how rejecting transplant and life embracing my mortality it didn't get the better of me and I was over coming my fear of it. Little bit messed up I know.

I also knew it wasn't forever, I was a real smart kid at 10, I don't know how I even knew these things. But I knew I didn't want to go through the getting iller process and then get well to only get ill all again.

I would quite matter of a fact tell my friends that I was going to get ill and need a transplant and I wasn't going to have one, it wasn't what I wanted. Do you know I even told Stuart I was never having a transplant.

I always said that by the time I'm that sick, I would be ready to die anyway. I was very dramatic in a calm nonchalant way. My embrace of death, it doesn't seem so brave and heroic as it did back then.

Then one day my doctor brought up transplant in clinic, he said that all my lung function was transplant criteria. The tears came blurring into my eye. I can't remember it all now, Just the convosation with my mum on the way out the hospital, as I stopped 5 times to catch my breath and sit down. I told her I wasn't ready to discuss it with anyone yet and would do so when the time seemed right. I told stu and I can't remember that convocation either, it's like this boulder had hit me and everything went blurred, but suddenly my mind wasn't screaming no any more.

It was a whole year from it being brought up until I actually decided I had had enough and actually yes I desperately wanted a transplant. It was me who asked to be referred then.

What changed? It became real and suddenly my life had just started to become all i had wanted it to be, I didn't want to go out in a blaze, like I had seemed to think I would. I hadn't lived long enough to change the world, do all the things I wanted to do. I hadn't even lived yet. Suddenly embracing death wasn't brave at all, i needed to be braver and learn to fight. I think Stuart saved my life, I had lots to live for before, but he just gave me that one thing I needed to fight for. I know it sounds cheesy but I guess love made me fight that little bit more.

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