Am I getting smaller?

Wednesday, March 03, 2010

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.

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  1. Cathy (chrikes)8 March 2010 at 18:37

    Well done Victoria - eloquently written as always and sorry to hear that you are having more bad days than good healthwise.

    You are really an inspiration to all with your positive attitude and managing to cope so well with your studies on top of your condition (well done on those A Grades).

    I really do hope that you get your transplant soon and you are certainly a very worthy Ambassador for Live Life then Give Life along with Rachael.

    Good luck to you both in your quest for treansplants.

    Cathy (chrikes)

  2. Glad you are blogging again, know it's difficult but I'm a fan, and hope you get that call soon.

  3. Well done with becoming a patient ambassador for LLTGL :) And well done with the results of your 2 latest OU essays.

    Sorry to hear about your health. Hugs. Thinking of you.

    Take care,
    Moll x x

  4. I am glad to see your message about donation. My husband and I are ambassadors for OneLegacy - the organ procurement agency for Southern California. My husband donated his kidney to his brother in 1998. We have been committed to the cause ever since. My prayers are with you. I hope your transplant comes very soon. Best of luck to you.

  5. Best wishes with your blogging and it is inspiring that you are making good grades while juggling so much.

  6. Cute Blog. ^_^
    From Bangkok THAILAND

  7. you have such a huge spirit! and you did so well on your exams! plus your appearence on TV was such good news!
    You are still in contact with friends so dont worry about that - be it email, text or facebook, and everyone will understand if you take a few hours or even days to reply!
    you do write so well that i think literature would be a good idea, but its up to you.

    speak soon xxxx

  8. Yes hunny youi're doing whats best for you and thats so important right now. You will make it hun keep strong and holding on. You're doing so well and have created a lot of transplant talk amongst my friends and fam who watched you bravely on GMTV. Everyone says how much the team at GMTV love you, they could tell by the interview. Makes u special darling...not everyone can build a rapport like that. Much love and keep doing what u can xxx