The dark side of the Force is strong with me!

The dark side of the Force is strong with me!

Sunday, 22 July 2012

Greetings and Salutations.

So, I finally decided to get off my lazy ass and start writing something on here. I'm feeling particularly reflective today and I find that those times are the best times to write. But first, a little bit about me. Why am I doing this? And why should you waste your time reading this blog?

As some of you who are following me will know, I was born with Cystic Fibrosis (CF).

Some of you will be wondering what that is and what the hell it means. In an effort to dissuade those of you that don't quite know what CF is from quickly Googling it and probably reading something which is wrong then I guess I'd best start there and break you in gently (ooh Matron!).

Here's some basic facts from the CF Trust website:

Cystic Fibrosis (CF) is one of the UK's most common life-threatening inherited diseases.

It is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body.

Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.

Over 9,000 people in the UK have Cystic Fibrosis.

If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.

Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population.

Over 95% of the UK CF population is Caucasian, but CF affects many ethnic groups.
Each week, five babies are born with Cystic Fibrosis.

Each week, two young lives are lost to Cystic Fibrosis.Currently half of the CF population will live past 41 years of age, and improvements in treatments mean a baby born today is expected to live even longer.

In a further attempt to show you what having CF feels like, grab yourselves a straw and undertake this quick experiment. After all, learning is fun! Right?

Knackered now aren't you? Ha! Welcome to my world.

So yeah, in layman's terms having CF is pretty much having fucked spazzy lungs that sometimes stop you doing the simplest of things, or making them extremely difficult for you to undertake.

Me personally? I'm not like that all of the time so I manage for the most part when I'm moderately well even though the days of me running like the wind are long gone so it's not too bad for the most part. Then you have those times when you're breathless getting a bath, walking up some stairs, or having a wank which is frustrating as hell. And so not sexy.

Things have started to become more difficult over the last few years for me, but that's as a result of exposing myself to various bugs caught from the general populance because of studying at university. That definitely sucks but fuck it, I'd rather try and do something with my life no matter what my situation is, or how much of a risk to my long-term health it may be.

What is also mega important to get across is that: EVERYONE WHO HAS CYSTIC FIBROSIS HAS IT DIFFERENTLY.

This is why when people Google it, it pisses me off because they inevitably end up finding, and reading the doom and gloom stories, or blog posts about it via media news, or that are written by people at end-stage which is just inaccurate, but lo and behold due to the power of the internet the information is absorbed and judgements are formed.

End-stage I hear some of you say? Yeah, about that there's no current cure for Cystic Fibrosis. It is fatal. Eventually. As mentioned above the current life expectancy is 41 years of age.

Again, I have to stress that this is just a statistic and by no means I'm going to croak within the next few years. Fuck that if I have anything to say about it.

The only hope for people like myself is a life-saving double-lung transplant as we will eventually get so ill that our lungs will be pretty much useless. I'll write more about that in a later blog though before I depress you all and you go emo and get the razors out.

So yeah, this is pretty much going to be my story. How I live and survive with CF. How I love, laugh and strive to succeed with it.

I'm writing this blog in the hope that it will educate, inform and amuse those of you out there that don't know what it is like living with CF, and in the hope that it will help people understand myself, and my fellow disabilists because we're awesome. And modest about it too.

Happy reading.

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