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

Sorry for taking so long to write properly but I literally haven't had a spare minute to do anything these last few weeks. Advance warning that this is likely to be a very long post so I can tell you everything thats been going on. I really miss it when I dont get time to blog and I find my mood starts to go down hill when I'm bottling things up that I can't get out of my system via a good old blog post,silly but true.

Right, so first news I suppose is that I am now writing for two blogs! Yes the woman who can't keep one blog up to date is now writing 2! The reason I'm doing this is because I have been made a patient ambassador for the transplant charity Live Life then Give Life. Along with my lovely friend Rachael Wakefield , we will be telling our stories, helping people put a face to the transplant statistics and writing a blog about life waiting for transplant (you can read the blog here or via the link in the right hand column). I'm really honoured to have been asked to do this and will do my best to keep people thinking about organ donation.

Another piece of good news is that I'm doing realy well on my Open University course. The last two essays I have written were some of the hardest I've encountered and no one could have been more suprised than I was when I recieved an A grade for both of them!!! The first A grades I've recieved on any of my OU courses. It really has made all the hard work worthwhile but more than that its made me feel valuable and like I've achieved something. As I have said over on the ambassador blog, studying is something that has nothing to do with illness but is the one thing that remains just for me. To do well on it makes me unbelievably satisfied and happy.
The course has done more for me than just cheer me up, it has made me seriously consider what I want to do study wise. I have enjoyed this literature based course more than any of the others I have done and am so far doing well on it. It is making me think about changing my degree subject to a BA in Literature. This would mean me doing a few more courses but I really think deep down this could be right for me. I know it sounds completely mad to change this late in the day! (and very unlike me) but I have to compromise on so many things why should I not take a leap of faith here? A Literature degree would make more sense for any acting dreams I have and if I find the work more enjoyable then I think its worth it. I'm still yet to decide properly but its something I'm very seriously considering.
On the not so good side I have been finding myself struggling more lately. I have reached the point in my course where I'm kept very busy and there is a lot riding on these last few months/essays. I am also struggling more with my health. I had a good clinic visit at the end of January but for months now I have been getting more breathless/exhausted with trivial things. Last month I had my oxygen levels checked to see if I required more oxygen to make my life easier. Everything is coming back as stable, my lung function is stable, oxygen is ok, blood tests showed my infection markers are fine, all definate positives......but I still feel awful on a day to day basis. It sounds awful but I almost feel as though I'm hovering in an area in between 'ill enough to do something and ok enough that theres nothing that will make a difference' and to be honest I'd rather be one or the other. Its been over 2 and a half years since I went on the list and while I expect things to have declined, it is very very hard to feel you need help and support but not to recieve it. Over the last few weeks I have become very wheezy and my chest often feels very uncomfortable. My treatment regieme barely leaves me any time to study and I feel like what I want to do has to take a back seat. Its like the CF is getting bigger and I'm getting smaller.
I'm determined to finish my course and to do it to the very best of my ability but when I am constantly doing meds or feeling ill it is becoming almost impossible (see here). Things like my blog, keeping in touch with friends etc are falling down my list and I'm struggling to keep my head above water at the moment.
That said, I will keep going until things get easier. I will do as much as i can even in the small snatches of time that I get away from treatments. I will keep on because of how lucky I am to still be here and because I will not let CF take away something else I hold so dear to me. I want this transplant so badly now, this life at the moment is making me appreciate how good things are going to become one day. There are so many things right now that I have to push to the back of my mind because I can't do them and to think about them physically hurts me. I miss so many aspects of the life I haven't even been able to begin yet.
If I'm not around much lately you will now know why, I'm still here (even if a little worse for wear) and I'm keeping on, the only way I know how.