About time I updated

Well what do I write??

Im still me nothing has changed 

Still working on improving my lung function and enjoying the CF gene therapy trials

Im still semmingly improving my physio techniques and noticed that I should really start doing gym work again to help with improving myself.

I have recently started doing core work to help try and build up my chest and sotmach muscles to try and give my lungs another push adn hope I can improve my lung function further.

I have sort of come to the conclusion that my chest and stomach muscles are a bit weak so by improving these I can improve my lung clearance by having stronger muscles to help clear the usual sticky mucus :-) One can hope at least anyway.

Im still determined to put together my fundraising plans for the summer. Once ive had more time to write it down and prepare a good plan i am going to send it on to CF trust to see if they wish to take part and hope to get more people involved.

But im not giving anything away yet as im convince its such a good idea im worried if I tell people my idea may get stolen.

That said once ive made some enquiries, put a plan together and got some essential people to like the idea I will reveal all. I just need people of certain specialist areas to help me

Anyway all that in good time.

I have been trying to spread the word of CF of Course as you may have seen I did the CF trust cystic fibrosis IS poster idea along with many others and so many had such great replies

And on a visit to Bluewater I noticed Nikon doing a free photo opportunity

There head line was
Nikon

I AM

So guess what I wrote for my Photo

I AM

A CF SUFFERER

he he

Sneaky I know but any publicity is good publicity and Of course spread the photo all over twitter and facebook

By the way if you wish to follow me on twitter I am @fox1985

I love to spread the word and im certainly not one to shy away from who I am and what ive got im very proud to be a cf sufferer


On a serious note

I do wish to say a short few words a few people that have recently passed away due to CF and to those in mourning for the lost.

We wont let cf win, it may have unfortunately made some pass away but when we lose some, others appear and notice and we gain more fighters and supporters and the fight against CF is only getting stronger.

Time and Money are the essentials to pointing a CF Life  to a better life and it will happen, its only getting better, results show that and people are noticing it

Death and how its scares some, and why im scared of it but for a rather odd reason

Death does scare some and no doubt about it I do get scared sometimes, not because I dont want to die but that I will run out of time to do the things ive always wanted to do.


That said I still have plenty to do and keep making excuses as to why I havent done certain things yet. That is changing though.

 

CF and a unique sense of humour

I saw the young lads audition on X factor the other night who had very bad cerebal pausey (Sorry my spelling awful) and he couldnt stand without his frame and sat down when he performed and I have to stay I loved it. Not just because he was funny but by the principles he clearly lives by and its something I think alot of CFers can relate too

I for one have a very good sense of humour and im not scared to use my situation as a cf sufferer to make a joke or two (And yes no doubt some are terrible) and my friends are all too aware of that as they regularly join in with a joke or two.

My bowel action being a very well used joke indeed by a few (You know who you are)


Im not the only one who has a sense of humour like this with CF and how I look at it and laugh sometimes even at my own expense

Someone I recently started talking to who also suffers from CF and has had a transplant summed up CF and a cfers typical sense of humour in a great one liner

Cystic Fibrosis is

BREATHTAKING

Absolutely brilliant.

The young comedian on Britains got talent and how cfers can relate

That young lad on X Factor was just amazing

His line off stage was amazing

When Ant and Dec said "you got a standing ovation well done"

His reply

"Yes I think they were trying to rub it in a bit"

We all need to learn a thing or two from him as so many people take life and comments too seriously

I love how i am and CF has made me this way and I wouldnt change it for anything.


A final Note

Some people say why do you do the things you do? Dont you worry?

I dont worry

Why would I?

Im not one to lie down and accept my fate.

I may know my ending but I also know I can keep the pen away for as long as possible that will eventually write it

You could say my story is still at its begining and Ive got plenty of chapters to come up with yet.

What is your cystic fibrosis is? And dose 2

Well what's been going on lately I hear you ask?

Well your not but I'm asking myself

Not much just been doing the usual, tablets, physio, sleep eat, tablets

Like I said just the usual

I recently done a cf poster for a cf trust competition,

I will attach a photo to show it but I had loads of ideas

The question is what does cystic fibrosis mean to you

The headline

Cystic fibrosis is?

Mine was

To live, to inspire others, not by
Disability
But by
Ability

But I had so many ideas

I will not be down with what I have been given but will excel with what I have got
THIS IS MY CYSTIC FIBROSIS

Cf is

About letting your heart lead you and your head store the memories of where you've been

The list could have gone on

I didn't win :-( but was amazing to see so many people's different thoughts and the usual cf sense of humour

I liked

Cystic fibrosis is
BREATHTAKING

Sums up cf and the unique sense of humour cf gives us and our outlook on life quite nicely in one sentence

Anyway well done to the winner I loved his cheeky idea very cool.

I'm still smiling so much about my lung function results from a few weeks ago and I'm hoping today will show it's stayed the same or got better :-) well I'm allowed to be optimistic

And I found out I'm still clear of pseudo which is great but I'm continuing with the drugs for a few more months just keep it away and make sure I don't grow it back again.

So what am I doing now?

I'm on HS1 on my way to London for dose 2 on my cf gene therapy trial

I'm very excited if not a little tired I've had a dreadful cold this week which has exhausted me but I think it's all gone apart from the odd sniffle lol so not too bad and I think I've kept my lung function up okay so not too worried

I love being apart of this trial it's so unique and fun and very educating in terms of how people are trying to progress medicine and research and in their hunt for the cure

Will a cure happen one day?
Well I wish they could and I hope they do but with medical advances now and this research, they are hoping to minimise lung disease in cf with gene therapy and kalydeco and that's the biggest killer 90% of all cf deaths in fact so if these medicines help then that's a huge boost to cf and will extend the average age of CFers so much so it's a big step in the right direction. :-)


But it all takes time and for some people that time is running out before treatment can help them

CF is cruel it's what it's sole purpose is to destroy life and to hurt the people around that destroyed life.

I have to be honest alot of people seem to forget this side of cf including some CFers who think it won't happen to them and I'm the same but the difference is I've also accepted that if it does happen to me never mind I went out trying :-)

I'm fully aware it may kill me and that's fine. Just maybe not yet ay ;-)

Why am I like this?

well I accept I may die and it's my way of confronting it and it helps me live easier because I don't worry about it I just get on with life and if it happens well never mind

I've enjoyed life I've certainly tried not to waste any of my time


And if another cfer loses their fight others must still carry on theirs because theirs no point giving up just yet that just means cf is winning the time trial of life and I'm not prepared to do that.

I'm very lucky with cf that I've had the time I've had and I hope to continue to be lucky but that doesn't mean I won't stop working to fend it off and stay healthy.

I work harder now than I ever have to stay in good health and its a price I'm happy to pay.

Work hard and reap the rewards of what you create

Life isn't to be wasted thinking others will help you.

That's just lazy

Help yourself first, then you can help others at times of difficulty


Anyway I'm waffling on


I have a question for all of you who reads this blog and please please do this

I want you to tell me what you think cf means to you?

What is your cystic fibrosis is?

Come on tell me?

It could be a harsh reality or a fun gesture but I want to hear from my friends family and blog readers?

I want to hear your thoughts?

Here's my picture of me

Enjoy

And on a serious note RIP to the unfortunate who are no longer here and recently lost out to CF

We won't forget you