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