Monday, 5 November 2012

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.


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.

- Posted using BlogPress from my iPad


  1. Your such an inspiration to me Kirstie, I watched your documentary and can relate to what you're saying here, although I haven't been through anywhere near what you have. I can't even imagine how tough that must have been, but I have Chrons disease and felt that sparkle disappear at one time too. But its great when you start to feel like your getting it back. I hope your doing well Kirstie, best wishes to you, Katie :)

  2. I have been Ill all my life Kirstie and all you have said is so true of me and many like me. I have (amongst many other things) non-cystic fybrosis bronchiectasis, very largely it takes away ones life,character and spirit, just like you. It is chronic so it grinds on and because it very often does not become critical you lose things gradually (usually-not always sometimes it is like cf you sink fast, overcome by repeated infections.) I have all the cf treatments to do with bronch just do not have so much digestive problems (I do have some just not as many and as bad) The big difference here is your age, to face these things so young like you had to is tragic. How you dealt with these problems is very near miraculous and you are such an inspiration in the way that you have dealt with it. To be told that you are terminal and how you are going to have to wear a ventilator and all they can do for you is to dose you up with morphine, well you and your fellow young cf sufferers have my greatest respect. I have got to a goodish age and still get depressed so for you to do what you have done since this greatest gift is to your credit, you could have been quiet about it and just enjoyed yourself but you have devoted time and effort to help your fellow sufferers by bringing everything into the public eye. God Bless you Kirstie, I hope very much that you can carry on as you are for the foreseeable future,best of luck to you. Kelvin xxx

  3. I have good days and bad days, and on the bad days these are the feelings I feel especially when I go places especially in a wheelchair or my friends tell me they are doing something or going somewhere and I can;t help the jealousy and sef pity from seeping in. I do however try and focus on the good days where I feel happy and positive :-) I think this post is great though because it lets fellow transplant listers know that what they are feeling is normal and it's okay to vbe feeling this :-)

    stacie xoxo

  4. Hi Kristie

    I really wanna say how amazing and brave you are. In someways i can relate to story. when i was 18, an energic ballroom and latin dancer, iceskater and all round crazy lady i was suddenly taken very ill with repeating collasping lungs. I had to have 3 operations, 2 of them were emergencies and i had to be awake because my lung capacity was so low. Before my third operation I was told that i may never be able to dance again and mum was told without the operation i would die and i may need a lung transplant if the operation does not work, I was terrified. It took 3 months to recover and i had to give up my degree but i am now doing much better.

    sending you HUGE love and respect xxx

  5. Hi kirsty i read on your fb page your suffering with ezcema round cannula site have u tried duoderm extra thin??? Cut it to fit under and around cannula site stick to skin. Then stick opsite or tegaderm on top as usual. it protects skin but also id great for wound healing...see link hope it helps xnat childrens/ neonatal nurse x

  6. I dont know if u can get link but its readily available on prescription we use it under ng/oxygen tubing on preterm babies then stick tegaderm on top. protects their fragile skin xx google duoderm extra thin to see pictures natalie:)