Thursday, June 19, 2008

When I decided to start writing this blog, I had 3 main reasons for doing it. 1) To document the struggles and triumphs pre-transplant so that I would never forget the journey 2) to raise peoples awareness of CF and organ donation, and 3) To help me get through the hardest time in my life by having an oulet for my feelings.
Writing my blog does soothe me sometimes and makes me feel as though I can get out some of the feelings that seem so huge inside me its a wonder they fit. I find it hard to be honest with people a lot of the time as to how I'm feeling and try to put a gloss on what i say. Not always, but sometimes.
Every now and again I feel like I'm having real trouble coping, and there are days where I just feel overwealmed by emotion. There are no reasons for it, it just happens.
I wish that phone would ring with the call that will turn my world around, sometimes I wish so hard it feels like I might burst with longing. It feels as though I am in a bubble and distanced from other people, my life is on hold while others rush around me doing normal everyday things unaware of how my life is so different to theirs. If they knew they wouldn't take anything for granted, but I don't begrudge them, how could they know how this feels.
I think of those who lost the fight and how their lives were so similar to mine. I look at old emails or texts and feel like crying inside at the hope they had for a future that never came. I want to live life to the full in their honour but its very hard when your world is getting smaller. Still I realise how lucky I am to still be alive, not in hospital and with my family, then I'm ashamed at my complaining.
There are (frequent) times when I realise how much I have gained from my illness and my current situation. I have a respect for life and I do believe I'm stronger for the bad times. I can't say I wouldn't change things if I had the chance but I dont regret anything. I've faced things I never thought I would overcome, but I have.

I don't want anyones pity which is why I use the glossing technique,but sometimes I need to vent so I don't explode. Thanks for listening to my vent.


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  1. Heck, let it on out! I saw your blog on Nate and Tricia's site you are 21 and life seams to be waiting for the next step if anyone deserves to let it out its you. Keep your chin up and remember God is Good!!

  2. I can completely relate. I do feel a bit isolated from the "normal world" in that I can't do many things.
    I should be running around with my 3 year old boys, but instead I just sit on the couch and quietly watch them (when I'm not doing treatments or sleeping).
    I love life, but it's "getting hard to be someone" while waiting...

  3. Hi Tor
    I saw your blog via Nate's blog and have read some of your old posts and will probably read the whole blog when I have more time . Its fascinating . I am amazed you manage to keep so upbeat , youve been on the transplant list for almost a year which seems like a lot ot time waiting to get your life back on track to someone who doesnt know much about these things . I hope the blog can help you keep your spirits up but know its ok too when you feel low .
    I will keep in touch with your blog now xx

  4. hey tor

    never gloss with me please, i know when i was more ill when i was younger i did want to explain fully how i was feeling, so if you ever need to vent even a little you have my number

    im glad you have this blog, and that sam inspired you for it, and thats good that she passed something or advice on to you, which you in turn could do to someone else!

    please try keep your hope there, dont let that fade, its what makes you YOU!!!

    love ya xxxx

  5. Tor hunni, pity is the very last thing I think about when I read your blog, Admiration - yes! Inspiration - yes!

    Letting stuff out isn't looking for pity, its a coping mechanism that gets things out of your head and into words and blogs are perfect for that so go for it, I do.

    I'm praying loads here for your call to come very soon.

    Great big (((HUG))) and loads of love.

  6. tis very hard at times honey and you're only human so vent away!! Thinking of you lots, big hug xxx

  7. Sending you a huge pink fluffy hug with a cherry on top, you so deserve it for putting up with this long and difficult wait. We're all here for you in any way we can be xxxxx