Before I begin, I'd like to inform you all of a charity event we are organising!! :) On the 10th of July, some of my family and friends are taking part in an abseil down Ipswich Hospital for Cystic Fibrosis, the hospital is pretty high so for those with a fear of heights, it will be quite a challenge! I'm so disappointed I can't do it, but with my health as it is, I can't exactly abseil with my oxygen lol.. So I'm sorting out the organising and cheering everyone on from the safety of the floor!!
I've added a 'justgiving' page on the left where you can donate online ->
If you could, please donate some money to CF, to sponser my wonderful family and friends who are doing this! It's quick, easy and could help towards changing the lives of people, like me, living with Cystic Fibrosis.
Now, on to the blog..
Something I've been thinking about, which has kind of been relevant lately, is death. I know it's not a very happy subject and it's not something people want to think/talk about, but it is something I am faced with daily and I'd like to share my views on it.
The first thing I want to point out is that I'm not scared of dying!
What I am scared of, is what will happen afterwards - I don't want my family to be suffering, I'm frightened of how they will take it, I don't want Josh to move on quickly, marry someone else and completely forget about me, I don't want to be forgotten full stop.
When you go for a transplant assessment they usually talk about writing a will and perhaps thinking about your funeral - I know I would want my funeral to be a celebration of my life, as opposed to mourning my death. I'd want it to be a happy occasion where people can have closure on the fact I am no longer suffering. I know I definitely want to be cremated because the thought of being freezing cold underground certainly doesn't appeal to me ;) I always prefer being nice and warm!
I have also been thinking about where I'd like my ashes scattered and something that has always been an idea to me, is to have half of them in England and the other half in America - because if I don't get my transplant and don't get the opportunity to go, at least I would have visited America somehow!! I know my Mum wouldn't travel to America but Josh could and it would mean he is be able to go to Vegas like we had always planned, I'd just be with him in spirit instead!
What you need to understand, from my point of view, is that for 20 years I have faced the prospect of not living a long life, I always knew the life expectancy was in the 30's and I knew transplant is usually only a last resort option.
I think that is why it doesn't frighten me, perhaps if I had never known how CF worked, I would be a lot more scared, but as it's nothing new to me, I can look at death in a completely different light. Of course it is something I have never experienced before, so the 'unknown' is always a scary thought! But I'm not going to spend however long I have left worrying about what it will be like, as they always say life is all about living in the moment and to be fair, with having CF, sometimes living in the moment isn't easy but I try my damn best and I can honestly say I don't regret anything, the people I've met, the places I've been, the things I've done, it has all made me who I am.
Every breath to me, however hard it may be, is precious and is something I will never take for granted.
On a lighter note - I do have a bit of a dark sense of humour and often make jokes regarding life and death, for example, Mum has asked me before what would I do if my hair was grey (because I love my blonde hair) I then respond with, I don't know, not many people will see it in a box...!
People often wonder how I could joke about things like that, but it's just normal to me!! I honestly am so happy with what I have done in my life and I'm not going to lie, I do have so much more life left in me, I know it! I'm positive, but also very realistic, I know my chances of getting a transplant are only 50% and then surviving 1-2 years afterwards isn't a definite, then 5-10 years is even less of a chance etc but if I spent my life dwelling on the statistics and what might or might not happen, I would not be living at all!
CF takes a lot of things away from me, such as my independance, but it will never take away my determination and spirit! I can guarentee you that up until my final breath, I will be fighting with every single inch of my mind and body.
I will not go down without a fight and if I don't win the battle, well at least I won't have to worry about that grey hair will I ;)!
Thank you for reading and thank you for all your support! :)
&If you haven't already signed up to be a donor, please do it now. It's so easy and something amazing could come out of a really horrible situation, I know death isn't something anybody wants to think about but it's something that I can't help but face, unless I receive a transplant - Becoming a donor genuinely saves lives. Sign The Donor Register!!!!