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

It's January 2014 and it's also my final month of Gene Therapy trials dosing

So firstly happy new year to all that read this blog.

Well where do I start??

Well the last couple months have been a challenge mentally and physically. CF has been trying its best to give me a rough Christmas period but I've kept my head above water JUST but I think I've come out in 2014 okay. I hope my lung function has stayed consistent I hope but I will know more later today as I'm having lung function tests this afternoon I'm excited but nervous and exhausted. Last nights sleep didn't exactly happen, I think I may have nodded off around 4:30am well that's the last time I checked the clock!! 

And I'm noticing changes with my body not related to my lungs or stomach but definitely as a consequence of suffering with cf. My left ankle now constantly locks up and my right knee is always on fire. I'm now depending on ibprofen gel 24/7 and I need the hospital to work out if it's cf directly causing issues or if it's my tablets causing an issue. Either way the pain is becoming worse and my Ankle is a real worry as I've had problems with it previously and it's been operated on twice and still not fixed it. It's worrying me a lot as it feels like it may collapse or break at any moment. This morning it felt like I hit a nerve and my leg collapsed on me resulting on me falling up the stairs, a skill in itself I tell you haha

I've also noticed that I'm always feeling exhausted despite sleeping loads and chest pains are becoming a regular thing. Oh and I've also had the odd heart flutter.

I thought my diabetes could be causing a problem but I've really been nailing that lately and can rule that out as causing a problem

All of this I will have to discuss with my cf team and no doubt have to have tests and scans to see what's wrong and if they can help. My priorities are sort the exhaustion out and get my ankle figured out.

Chest wise it's been a struggle but lots of autogenic drainage pulmozyme and antibiotics have cleared something nasty that I had over Christmas and during December, I'm not sure it's killed it yet but it's doing something positive.

Like I mentioned earlier I have been having another go at getting more understanding of my body and diabetes and in short I think I've got a better plan to cope with it and control it better which I know is very important to help keep my chest healthier. 

And last but very much not least.

Next week I will be inhaling my final dose on the gene therapy trials. I still don't know what is going on in terms of what I'm inhaling but it's been a privilege to have been apart of the trials.

I'm excited to finish it but will be sad to finish and know that I will soon have to say goodbye to the trial team. They are an amazing bunch of people and it's been great getting to work with them and know them I will be sad to leave for the final time.

Mind you it's not all completely over just yet

I have 3 more visits after final dose to finalise the research and the most important bit of all??? 

Well my final visit for my last bronchoscopy. I'm not looking forward to that bit mainly because I know how awful I will feel after and it takes a few days to get over the effects of it but more worrying is the day after the bronchoscopy I'm due to jet off for a stag do. 

Hhhmmm,, scared??? yes

Stupid???? I always am

Determined??? Of course I am

I will of course keep you updated

I will also write a final trial blog when I know everything that happened and will let you all know what really happened ;-)

I'm off now time to get poked and stabbed by nurses and doctors 

oh and finally and the best news of all.

id like to announce that I asked my girlfriend to marry me over the christmas period and she said YES :-) 

and now we must plan the whole thing :-) 

Thanks for reading