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.