Thursday, 16 January 2014

How CF makes me feel! Just a few things I thought I'd say

Firstly before anyone gets the wrong idea I'd like to say that this is my own opinion but I'm sure others feel the same 

How does CF make me feel?

Well actually it doesn't make me feel any different to anyone else because I've never felt like others have so if I don't know the difference how can I feel different??

I've only lived with what I've got and that to me is what I am and who I am but to me I'm not different. 

Have I ever been treated or scene as a different person?

You will always get someone who sees you as different but in general nothings been different for me or my friends or family

Okay some people do see you different and may treat you different but I've never experienced that in a negative way only in a loving caring way 

For example when I go out with my friends they always watch out for just to make sure I'm okay but they have never stopped me doing anything because they know I will do the same things they do even if I can't I will always try and they know I hate to be seen differently but they just care and there's no harm in that 

In fact I'm very grateful to all my friends who have watched out and care for me over the years and I cannot thank them enough for what they have done for me 

Even though I'm not healthy I still know no different so to me I'm just me I'm a normal person no amount of drugs, needles, tests, mucus or infections have changed me or will change me

I like my life and to me I'm just lucky to have enjoyed it so much as I have I've had my down days like anyone but they make you wise 


Is there anything that I see differently at all?

I don't think I see anything differently but I think I maybe appreciate things more than some others may be do. Why? Well I think and may be I'm wrong but with any serious life long illness or a near death experience it can change you and you learn to love things more and for me CF has made me love and appreciate more things than most people would and I'm open to trying and falling in love with any new things I've done

For example my grandad Tony used to love his classical music and when I was younger I never really understood classical music and opera music but I always loved hearing it when I walked in to my nan and grandads and seeing my grandad sing it and make it fun and for me my grandad gave me a gift from a young age and that was to teach me what it was and it meant. For me it's something I hold special to me as I've got older I've fallen more in love with this type of music and it holds some amazing stories and love and romance. A lot of people don't know about my certain types of music choices and some may laugh but answer me this

I bet you know the words to this song called

O sole mio from 1898 what is it?? Well someone eventually re wrote it to become the cornetto song and I bet we can all sing that aye

And I still listen to classic music to relax too there's just something I love about it
Oh and by the way my favourite songs are many but to pick a few I love
Ava Maria
O sole mio
Experience by ludovico einuadi
 And my big favourite
Con te partire by Andrea bocelli


Do I worry about the future?

Yes of course I do who doesn't, except I'm not worried about what the future holds for me as such I'm more worried about how people will cope with my future as my health inevitably gets worse and how they haven't excepted it as much as I already have or don't understand it yet which isn't there fault learn sing about cf and how to live with it takes time it always will and some people are just to young to even begin to understand it yet. I'm more worried about who I will leave behind


What about my future plans with cf?

Well you can never plan with cf as such but I have my future work plans prepared, my paperwork is done but most of all I am really hoping to become more involved with cf charity work and cf research like I want to take part in more trials because it's been great fun being on gene therapy trials I've learnt a lot about it and more importantly I've learnt a lot about myself. And I've always been willing to risk myself to help out 

Just think they may find out something that doesn't help me but they learn from it and that helps someone else I don't see it as giving something up I see it as giving something to use for the good no matter what it does to me

Final thought

Am I scared??

I'd be lying if I said I wasn't scared of cf. Not because I'm living scared of it I'm just scared of the things I haven't learn about CF yet and what it holds for me for the future not as in what will happen I just don't like pain haha 

And Death?

Do you know what I'm not going to answer that it wouldn't be fair but I will say that I like to live my life by this saying

The Brightest Star Lives Half as Long

And that's how I like to live by taking in everything because I intend to do and see more in half the time and enjoy every opportunity I get life is for living after all


Why am I writing this blog entry

I just simply wanted to share some thoughts with you 

I hope you enjoyed it


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