It's been finding things a bit tough since I last wrote. First piece of news, my lovely friend and fellow ambassador Rachy Wakefield has got her transplant! She is recovering well and you can read more about her transplant journey here. I am so happy for her as she has had a tough old fight to even be listed, but like I have said over on the ambassador blog, it is very hard to see other people get the call that you are longing for so badly. While it doesn't change the fact that I am really pleased for Rach its still makes me question and be afraid of my own future. We were an example of the statistic that out of both of us statistically only one of us would get our call, the chance at life.
I have also been struggling physically as detailed in my last few blogs. Its been 2 years 8 months well over my original life expectancy. To be honest I feel I have been overlooked in terms of the support I need and it makes it even harder to get through each day. Life has been reduced to a very limited existance. I can't work anymore (havent for years), I can only manage to get out at weekends, every task leaves me breathless and exhausted, I have virtually no independence. If I do manage to do a bit more one day I end up completely worn out and in a state for the next two or three days, I just can't bounce back from things anymore. I hear about people who are out most nights, or off doing loads of things during the day and its a distant memory to me. I honestly don't know how much longer I can continue like this and feel for the first time that my call may not come after all. I feel as though thats the forbidden thing to say but its true.
I am still determined to keep going and to keep raising awareness as long as I possibly can. This week I appeared on GMTV to talk about organ donation and to tell my story. You can see the clip below. Despite how exhausting these stints are I love doing them, because it makes me feel empowered in a world which sees me feeling less in control with every passing day. I had to get up at 4am in order to do all my treatment and allow myself time to get ready which left me very tired. I already knew the presenter Ben Shephard from our brief meeting at the Breathing Life Awards, and we also keep in touch via twitter fairly regularly (as well as being a reader of this blog, Hi Ben!). Ben does a lot of work for the CF trust and is a generally lovely guy. I was quite nervous before the interview but Ben chatted away and really put me at my ease. The interview went well and I have had so much positive feedback as a result. It was a pretty full on day and I admit I did overdo it a little bit which resulted in me having to go to bed during the afternoon and losing my voice from over exersion. I heard later that the Organ donation website had double their usual amount of hits! An amazing response! It really made the effort involved worthwhile, so many people have told me that they watched and signed up or know someone who did. It has made me want to do even more because despite the aftermath of feeling crap, it is on my terms and the work is worth the prize. Feel free to pass on my post/interview, the more people that see it the further the message is spread.
I'm resting like a good girl this week in order to get some strength back. I have a visit to my transplant centre on Wednesday so will be completely zapped after that. Good wishes for the visit would be appreciated please.
Much love x