The dark side of the Force is strong with me!

The dark side of the Force is strong with me!

Monday, 26 November 2012

Fear Costs Life

This latest blog isn't going to be particularly in-depth about an aspect of living life with CF. It's more a statement about life and what life is really about. Deep huh? It's going to be one of those blogs that will probably come as a shock to people who read it (Andy has actual feelings - shock, horror!).

About three years ago, I was reeling from a break up with someone I was on and off with for about two years. At one point I decided to dip my toe in the realm of online dating which was overall a nightmare as in my opinion, most people who online date are completely emotionally damaged for the most part and batshit crazy.

Don't get me wrong, there are diamonds out there on the t'interwebs, but overall it's just a huge NO for me.

And that's what this blog is about: the person who walked into my life that is a diamond.

I didn't realise it at first, I took her and her feelings for granted and in all honesty didn't believe her intentions were true. You see, for all my confidence when it comes to life and women in general, pretty much every woman who has said all the nice things that we all want to hear has inevitably fallen short of proving them with their actions at some point so I've been hesitant to believe them.

That's not to say all my exes have been bad, just most of them have.

Also, when you throw into the mix societal pressures regarding gender roles in relationships, 'men must have a job' and 'you must be able to have kids' and so on (a lot of women are incredibly shallow and fickle these days), being an adult male with CF is quite troublesome at times and as a result I was simply too scared to believe my diamond was genuine. I mean why would any woman be seriously interested in a man who can't work anymore, can't naturally have children and most of all who would want to love/risk loving a man where there is a good chance that they will die at some point in their relationship/life together?

That is the absolute truth of the matter but what a fool I was for thinking that bullshit eh?

I believe fear is mankind's worst trait. Quite simply put it holds us back, it denies us so much in life, so many good things that many more people would experience if they just had the balls to acknowledge it, process it, and laugh in its face.

I know I like to sing and dance about being awesome all of the time but the brutal truth is that at times, I am just as guilty of being as weak and fearful as many people are these days.

To her absolute credit, my diamond stayed in my life and I now absolutely couldn't imagine it without her. She's never faltered once, doesn't care that I have Cystic Fibrosis or that I am unable to work anymore as a result and has been steadfast in showing me how much she loves me over and over again. She's been there for me when I've been seriously ill, happy, sad, grumpy the whole nine yards and we've also shared some really great times together too. In short, she's the only person who has ever truly made me feel like being 'me' is acceptable and when we spend time together it is as though the rest of the world and its problems just don't exist. She's been completely infallible.

That's a very special thing indeed. It's that thing which we read about and see in films and cultural narratives/discourses. And its that thing which many people search for their entire life but unfortunately never attain or find.

I've recently decided to face how I truly feel about her, and she knows this, because quite frankly and as much of a cliche it is life is just too bloody short and I'm bored of pretending and lying to myself, and most of all lying to her.

You don't take for granted what we have and regardless of the fact that if this particular part of my life has an happy ending or not as that is up in the air at the moment, then I know I won't ever take her or her feelings for granted ever again.

In short, what I want to say is don't be scared to love people, or BE loved by people. It's incredibly hard at times I agree as so many are not true to their words these days which I have experienced over and over again, so if you're lucky enough to find a diamond who is then grab it and cherish it. Your life will be enriched infinitely.

If my diamond is reading this then I just want to say thank you, for being you.

Oh, and to everybody else I'm not having an emotional breakdown or anything or turning into an emo.

Real talk.

Peace out.

Friday, 23 November 2012

Naso - Gastric Feeding. What It Do?

Greetings blog readers, that's if there are any regular blog readers that is. I've been off the radar for a while making positive changes to my life which have led to a happier me, so all good there then.

I thought I'd best just pull my finger out and get blogging regularly again then. Every little helps with CF awareness and all that. So, what to blog about pray tell?

As it is coming upto to the festive period, I've started noticing all the token 'must start dieting for the Xmas' type tweets and Facebook statuses from people.

That's right, human beings are annually gearing up for their two week greed and gluttony fest as is the case every year, starving themselves or indulging in some revelationary 'new' diet fad which consists of fucking their bodies up by ingesting only juice/soup/grass or whatever the multi-billion dieting industry tells them is the 'absolute guaranteed' way to lose weight this year.

Hello manipulation central. And all for what?

Anyways, before I engage full rant mode about normals and weight I thought i'd write about weight gain and the problems people with Cystic Fibrosis face in trying to keep theirs up, so here we go.

As some of you may, or may not know CF doesn't just affect the lungs it also affects most primary organs in the body in some way including the pancreas. The same thick, sticky secretions which clog and infect our lungs also inhibit our ability to digest food properly. This leads to malnutrition in many people with CF and a constant, neverending and quite tiresome at times battle to gain and maintain weight.

Here's a picture of all the stuff CF *can* do to someone:

In order to assist our pancreas in breaking down food properly many of us take pancreatic enzymes with all food and drink consumed. Here's a pic of the ones I take called Creon 10,000:

These are little capsules which I take whilst eating all meals and snacks that help break the food down and assist the pancreas in absorbing nutrients and vitamins and so on. My dose currently stands at 6 with meals and 4 with snacks although I can change this depending on size of meals and fatty content of what I eat.

What happens should I forget to take them or if I run out? Intense stomach cramps that floor you and epic runs requisite with ring sting on the old brown eye so it's usually a good idea to make sure you always carry some in your bag.

Now, I've always managed to keep a good weight on me over the years. When I'm well it is usually between 70-73kg and I'm not a fussy eater so it has never really been an issue with me, I've been one of the lucky ones for a long time.

However, last year when I split with The Girl and all of the associated emotional trauma that come swith such things, my weight plummeted to its lowest ever of around 66kg in just over two weeks from what had been a respectable 72 kg (relationships - bad for your health or what?!).

At the time I was in my critical final semester of my undergraduate degree and desperate to stay well so I could successfully complete that with gusto. After discussion with my hospital dietician about the potential risks of any added infection which would cause my weight to plummet further (when you're ill your body uses calories to fight infection hence why good weight is essential for people with CF) and leave me seriously ill, a joint decision was made for me to start Naso-Gastric feeding regularly in the hope that it would help me regain lost weight and act as a buffer in the last few stress filled months of university.

I was gutted, I won't lie. Despite being mature about it and knowing treatment increases the older you get due to your CF getting worser I was still pretty upset by this as, well, feeding with a tube down your nose just isn't sexy so the vanity worries/issues of how it would look to any potential girlfriends raised their heads. Needless to say I soon put those to bed and was admitted into hospital for the weekend to learn how to undertake the treatment at home. I mean, if anyone can make a plastic tube going down your throat and then stuck to the side of your face sexy, I can. Right?

SO. All went well in hospital as I was only admitted for the weekend and I swiftly returned home to continue to feed overnight under my own supervision.

Here's a run down of what happens and the equipment I use. Firstly we have from left to right: a standard infant feeding tube, some scissors, the all important tape, lube (handy for the ladies too, if needed), a PH strip and a 20ml syringe:

I usually start by unwrapping the feeding tube, which is numbered and adding a little tape at the mark of number 65. Why? Because the tube is lined up from your belly button to your nose when you first start feeding to provide a rough estimate of how much length is needed to get down into your belly, too little and your feed could run into your throat, and too much could result in it coiling up in your windpipe which wouldn't be cool at all.

I then dip the end in some lube, sliding it in gently, but deeply as the moist, sticky wetness engulfs my..... oh shit, sorry I was going all '50 Shades' then. My apologies. So yeah, I lube up the tip (it still sounds sexy - fuck!) and slowly start inserting it down my right nostril. Now this is the bit that usually makes people gip, my ex couldn't bare to watch me do this but it really isn't that bad and doesn't feel bad either. It is akin to slowly swallowing a really long piece of spaghetti, the only tricky bit is when you get to your trachea as if you get it wrong you inevitably gag and start coughing loads which is what happened to me on my first attempt.

I should just now make a personal apology to all the girls who I have made gag in the past whilst performing sausage swallowing on me as I now know what that feels like in some sense. You have my heartfelt and sincerest apologies ladies.

Anyways, once you get to the marker on your tube and if all feels well then it is usually a good bet that you have successfully completed accessing your stomach so you strap your tubing to the side of your face with some tape. In order to further underline things are right you must then draw some bile from your tube into the syringe, not much, just a ml or so and then test it on the PH strip. This ensures it is in the right area as you really don't want to have mistakenly threaded it into one of your lungs.

That wouldn't be cool. AT ALL.

Next step is making your feeding bag up. I'm prescribed 4 tubs of Ensure TwoCal which is a weight gain supplement rich in calories and nutrients. Each tub contains 400Kcal meaning I'm ingesting 1600Kcal whilst I'm sleeping as my feeding pump is set to a 100mls an hour rate. Some people with CF choose to have their feeds running at higher rates to get it over and done with quickly but not me as rushing it can lead to exacerbating bowel problems which really isn't cool so I'm a good boy and stick to the guidelines set by my dietician.

Here's the tubs of Ensure TwoCal:

Here's the feeding bag attached to the pump:

And here's me all tubed up (with oxygen too). Who could resist such sexy bedtime appendage I ask you?

So yeah that's the basics of it all. After a few months of overnight feeding I successfully managed to regain all of the weight I lost and it was decided to continue feeding as I could feel the benefits. I had more energy, my weight was up and my appetite was better throughout the day too on account of the feed stretching your stomach which is all great stuff. I've even recorded my best weight ever at clinic since starting the treatment so if anyone is thinking of starting it, or it has been suggested by their CF team then I'd really advise them to go for it.

It does have its drawbacks though, sometimes and especially if you have overnight oxygen too you can wake up in the night with your tubes wrapped round your neck and such, and overnight feeding can exacerbate/help the onset of Cystic Fibrosis related Diabetes, however regular checks on your blood sugars at outpatients and as an in-patient will help keep an eye on this and shouldn't put anyone off. And as mentioned, it doesn't look the sexist but you know what fuck it, who cares?

That's about it then, if anyone has any questions then feel free to comment. I'll write another blog following this one up about why normals moaning about their weight pisses me off when I have some more free time.

Until next time, stay sexy you beautiful bastards.

Sunday, 14 October 2012

What I Do.

First off, I'm actually gobsmacked at how long it has been since I last blogged, and there I was thinking it would be easy to write regularly about the myriad thoughts and opinions whirling around inside my brain.

Note to self: must do better in future!

That is, of course, assuming anyone is reading these posts and gives a shit about my rantings and ravings.

So. Here I am just about to start the 4th week of my Master's degree and all is going swimmingly. I have a raging education and knowledge boner about the topics we're learning, a small and diverse range of fellow coursemates who all seem lovely, great tutors and all is well. It's exciting to be back in education again and I can honestly say it is one of the things which keeps me going during the tough times of my illness.

Learning, knowledge and education really should be at the forefront of more people's lives as it truly isn't appreciated these days.

One of the things which myself and my coursemates have been discussing amongst ourselves is how we explain to people just exactly what it is we do. I mean, when asked by numerous people, ''what are you studying?'' The answer of, ''Cultural and critical theory mate.'' usually falls on deaf ears and tumbleweeds of silence ensue from a whole range of people. I kind of like that though, an air of mystery and all that, like a badass intellectual James Bond only without the dry Martini, shaken, not stirred. I'm more of a Jack Daniel's and Coke guy myself.

So what is cultural and critical theory? I guess the best way I try to explain what it is that I do is that I deconstruct ways of viewing the world, society and culture around us, and then I reconstruct them into new ones.

What is the point of that I hear you ask? Well, for starters you can tell a whole bunch of things about a society by the culture they produce and invest in. Like, for example the fact that everyone who seriously invests in vapid shit like The X-Factor and thinks it is a serious contest to find a genuine musician is being manipulated by the mass media and exploited by people like Simon Cowell.

I must state that is common sense knowledge to those of you with a brain so you won't be surprised in reading that example. Kudos if you are one of those people.

However, what I like about Cowell, who, to his credit may be a smug arrogant cunt but at least he's still honest about the fact he's making his gazillions from exploiting the stupidity exhibited by the vast amount of sheeple out there. I do respect that level of arrogance somewhat.

Kudos to you 'bro. I totally would too. There's money to be made in them there lack of brains after all.

So yeah it's stuff like that, it covers a whole range of sociology, psychology, literary theory, art, sculpture, architecture, politics and pretty much all aspects of society. It's knowing a lot about the systems and mechanisms which make the world turn that most people know zero about and don't realise they are being controlled and exploited by.

It's kind of being on the outside of the knuckle dragging masses looking in, which when I thought about, it draws a similar parallel with Uatu the Watcher, a character from Marvel Comics.

Who? This big, bald-headed fuck right here:

This is Uatu the Watcher on the cover of Fantastic Four #48 (March, 1966 Marvel Comics)
He's a member of the extraterrestrial race known as the Watchers. These big, bald, beautiful bastards stationed themselves across the universe to observe the activities of other species. Uatu is the Watcher assigned to observe Earth and its solar system. Kind of like the ultimate nosey bastard then.
I bet you're all thinking what a fucking comic book geek I am right now, right? Yeah, and what?!
The emphasis I'd like to place on the similarity of cultural and critical theorists to these big, bald-headed fucks is that of observing. Cultural and critical theorists observe and constantly analyse the world around us.
Sometimes that's really hard because there's a lot of fucking stupid people and situations in the world as I'm sure you all know so it can sometimes feel like a curse and burden that we see and analyse things on a much deeper level than most can, or ever do. It's also hard because our opinions and viewpoints can often be brutal and controversial, fortune favours the bold though, right?
It's especially hard to do for me at times, because being born with Cystic Fibrosis gives me an outlook on the world and society which has made studying cultural and critical theory a natural and perfect fit for me. The hard part is that I see the world differently from the norm, but then my view takes on a whole differnt slant and weight when you incorporate my existence as someone who is dying from an incurable illness.
I kind of see myself as a specialist within a specialist field, if you will.
Myself, and fellow CFers literally exist within a completely seperate reality from everyone else, and nobody can ever, or will ever understand that, except those others also born into this existence. It's just how it is and always will be. For example, you can be the most qualified medical specialist in the world at dealing with CF with a list of prestigious qualifications as long as your arm, but you are still an outsider and somewhat of a novice looking in on the world of someone born with it. I know my doctors would shit bricks if I ever said that to them too haha
And that's where I want to focus my work. I want to contribute to society's wider understanding of both disabled people in general, but especially so as to the understanding of the lives and experiences of those of us living, and most importantly of all, surviving and thriving with CF.
I'll leave you with a quote I like by Jack Keroauc, which I think resonates on this particular subject of just what it is that I do:
"Great things are not accomplished by those who yield to trends and fads and popular opinion."
Indeed. Until next time, peace out bitches.

Tuesday, 4 September 2012

Death, Rage and Why I Can't Stand Most People

So. I haven't blogged for a while, mainly due to being incredibly busy since coming home from my latest bout in hospital as I had Megababe staying over at mine for bank holiday weekend and then we went to Bingley Festival this weekend so it has been good times aplenty.

However, I logged into Facebook this morning and read the sad news that a fellow CFer had passed away on Thursday. His parents had requested that this information be kept private over the weekend to understandably grieve and come to terms with their loss and this sad news.

He was a great guy. I know everyone says this about people when they pass which a lot of the time is fucking bullshit.

Case in point, I've attended some funerals where the people who have croaked were absolute cunts and yet there were predictably glorified in death which I find hypocritical to say the least. I understand why, partly for comfort of family to ease their loss, and partly a cultural practice but that's just my personal feelings on such matters.

This guy genuinely was a great guy though, he was intelligent, witty, and had a dry sense of humour that enriched everyone who knew him. He was one of the good CFers - those who just get on with it and don't bleat on about it all being emo and depressing (boil my piss do those types).

Instantly in my cool book then from day one of knowing him.

I'm obviously now feeling a lot of rage at this news. Rage which has been exacerbated by the daily incessant whining on Facebook and Twitter. People whining and complaining via their posts, statuses and tweets about shitty, self-made minute problems that can be solved by a simple case of manning the fuck up and dealing with their shit quite frankly.

It bores the absolute fuck out of me most days in general and is one of the reasons I post my offensive thoughts and commentary on life in an effort to block out their bland pointlessness.

I have zero tolerance and empathy for weak people you see. This has also been exacerbated by getting older and generally caring less, and also the fact that everytime I lose a CF friend who just got the fuck on with life without any moaning, it has chipped away at being empathic towards most other people.

I just genuinely don't give a fuck about people who choose to mess their own lives up. Be it through whatever means, drink, drugs, bad relationship or life choices, or just plain stupidity.

Ooh. Controversial as always then.

Now before you all think I'm going all depressive, or am dead inside I'm not. I'm just being brutally honest.

You see, death is no stranger to those of us with CF. During my formative years in paediatric care we were shielded from it. When in hospital, if one of our CF friends passed away we were simply told that they had 'gone home' and chances were we would never bump into them again. As transition into adult care came about during our teenage years we were exposed to it, and as CF is CF, this was a pretty regular occurance, still is to this day and will continue to be the case for the rest of my life.

I've had regular occasions where I've lost 3 close CF friends every couple of months once or twice a year, and they've all been of various ages. All would be considered 'young' by society though. Some were just hospital acquaintances, but most were people who I had grown up with throughout in-patient hospital care. An extended family, if you will.

Death is normal to us. We don't fear it. We laugh at it. Mock it. Almost welcome it by pushing ourselves towards it in the pursuit of hedonism. Stick one finger up at it and say fuck you reaper, you'll take us when we deem it to be time, or at least we'll make you wait as long for as is possible you cloak-wearing, cock-juggling thundercunt. Most of you will be lucky to only lose maybe one of your parents, or your grandparents in your lifetime so as you see, things are very different for those of us born with Cystic Fibrosis.

We also take the piss out of death and dying. I genuinely do find the whole thing hilarious and am often chastised for mocking deaths, especially those of pointless celebrities. I mean if you can't see the funny in people like Michael Hutchence and David Carradine croaking from some kinky powerwanking choke sex games then you are very boring in my modest opinion. After all, what's not to laugh at about that scenario?

Call me and my sense of humour sick and twisted all you like, no fucks are given. Nor are they ever.

I've probably pissed people off by saying I have no sympathy for weak people but I don't. I don't mean those people who suddenly have horrible life-changing events thrust upon them. Not at all. I mean those cunts we all know who can't go a day without whining about some insignificant bullshit that 9 times out of 10 they had a hand in causing and perpetuating themselves.

You know the types, when you see statuses and tweets with stuff like this on them:

''Waaaah. I hate my job.'' - fucking change it then, retrain or re-educate yourself. Simples.
''Waaaah. My boyfriend/girlfriend treats me bad.'' - fucking dump them then. Followed by...
''Waaaah. But I 'love' them.'' - in that case you're a daft cunt and deserve all you get then. Bore the fuck off.
''Waaaah. I'm ill.'' - pop some Lemsips and shut the fuck up then.
''Waaaah. I feel so shit after a weekend of plying myself with drink and drugs.'' - just shut the fuck up you stupid fucking fuck.
''Waaah. I'm bored.'' - get OFF the internet then and just fucking do something you lazy attention seeking cuntrag.

This is pretty much how my thought processes go everytime I read that inane shit. In fact I may now cross the line and just start replying with what I actually think instead of ignoring them like I normally do.

It is at times like this that having, living with, and dealing with CF can feel very much like a massive burden. Not the day to day treatment stuff part of it, just the having to be strong and deal with it side of things when you're dealing with a society of mass fuckwittery. Every. Fucking. Day.

I mean, just when did the shift occur within society that the weak, knuckle dragging fuckups outnumbered the strong, sane, fun people and why the fuck do we have to tolerate their bullshit? Truth is, we don't, so fuck them.


So yeah. I'm going to wrap this one up now as I have shit to do with my life.

If you're reading this and are one of the weak people I've mentioned, please smash your face into the keyboard as hard as is physically possible and then start making some changes in your life. If you surround yourself with shit people, ditch them. If you are unhappy with your life, just fucking change it already.

You only get one shot at it and if you waste it, then it is YOUR fault and nobody else's. Personally, I don't intend on looking back on my life from my deathbed and regretting the stuff I didn't do. Hell no.

I give no fucks either way, and the rest of us are really tired of your bullshit.

Peace out and big respect to the arse kickers out there. I love you all dearly.

As Jack Kerouac said: 

“The only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn, like fabulous yellow roman candles exploding like spiders across the stars and in the middle you see the blue centerlight pop and everybody goes "Awww!”

Monday, 20 August 2012

Hospital Times

So, yeah. I'm in hospital at the moment for some routine treatment after my last checkup didn't go too well. My lung function had dropped to 25% (a bit shit) and I was called for a bed after waiting a week. It's all very routine as I expected to need treatment after finishing university which drained me.

I've been thinking about writing a blog about it as time in here is difficult in many ways and time itself passes incredibly slowly indeed. Sometimes, seconds and minutes seem like hours as we await the IV drugs doing their thing to slowly aid our bodies back to a decent level of health.

So what happens when I am admitted into hospital for a two week period of treatment?

First of all I'll head to my room and unpack all my stuff, make things slightly more homely.

We're incredibly lucky at our CF Unit in Leeds as it was purposely built for us a few years ago at a cost of about £2.1 million if I remember correctly. It is comprised of 13 in-patient beds, 5 out-patient rooms along with several admin offices and conference rooms for the staff and doctors who work tirelessly to nurse us back to health after bouts of bad infection.

A lot of hospitals with CF Units around the UK are pretty dire from what I've seen and been told via other CF patients on Twitter and Facebook. This is due to a lack of awareness and facilities. There's currently around 9,000 people with CF in the UK and that makes it a minority disease, which in turn means lack of funding and facilities that have a knock on effect to patients care depending on where you live.

The CF Trust and NHS are doing sterling work though to make sure all hospitals have a good standard of CF care facilities. I am very grateful I live in Leeds as ours is a recognized centre of excellence so I'm in good hands. We have about 400 patients registered at our unit which is astounding so again I'm grateful for the high standard of care we recieve here.

Anyways, enough with the ass kissing. Once all my crap is unpacked and I check that everything is working in my room and then we are usually seen by a doctor who will assign the various treatments that we are going to undertake during our stay. Sometimes it is done by junior doctors (usually don't have a fucking clue as they are still learning) and sometimes by senior consultants. It all depends on how the cookie crumbles.

I'm prescribed high strength IV antibiotics to combat the bacteria growing inside my lungs which I take through a drip at 10pm, 6am, and 2pm and boy do they kick the shit out of you in all manner of ways.

You see, they have side effects. The ones I'm on make you incredibly tired and just generally make you feel weird but it's a necessary evil. Most of the side effects from the drugs and from having CF itself I can handle but the tiredness is something else. Spending two weeks constantly drained no matter how much sleep you may get is just no fun whatsoever and leaves you feeling quite emo eventually which is where I am with them now. I'm tired. I sleep. I wake and am still tired. It's a relentless cycle. And, combined with the fact that I have daily exercise that tires me out further as part of my treatment and some deliciously hot and muggy weather at the moment then I am not a happy bunny at all.

That's the bit that winds me up. I'm usually one happy bastard despite my rantings on Twitter and Facebook and I'm pissing myself off now at not being very cheery and constantly feeling like I want to tear everyone's heads off for the slightest little indiscretion. I miss being my happy normal (ish) self.

It's a neccesary evil though as I said, I have to endure this as it is just how it is and at least after 10 days of treatment I only have 4 left until I can go home and have my freedom again. The light is at the end of the tunnel. I can finally see it. Thank fuck.

I should in all honesty just shut the fuck up and deal with it as there are friends who have had to endure months in hospital whilst being severely ill and I sometimes wonder how I will cope when those times come for me in the future. I live nought but a 20 min bus journey away and have plenty of things I can occupy myself with whilst many patients are from farther away from their homes and loved ones. The tiredness has claimed me though. My concentration is shot and I don't have the energy to do normal stuff. If I manage to then I'm usually a muted druggy mess which frustrates me further as I feel like I'm being shit company If I do spend time with mates and loved ones.

It's even taking a while to organize my thoughts into something coherent whilst typing this. Lame.

I honestly cannot wait to get home. The first thing I always do is drop my bags as soon as I'm inside my flat and go straight to bed. That thought alone is making me so moist right now I kid you not.

*le sigh*

At least feeling like this is not permanent and after lots of sleep I will be back on top form.

I'll write something more cheerier then and may edit this as I'm sure there's plenty more I can write.

Peace out.

Sunday, 29 July 2012

That Was The Week, That Was...

So, a week has gone by since my last blog and nothing much exciting has happened really... oh wait, I only went and graduated motherloving University on Tuesday didn't I?!

It. Was. Ace.

My official title is now Andrew Ward BA (Hons) in Media and Popular Culture. Fuck yeah.

I had two graduation ceremonies to attend as myself and one of my closest friends had bagged some prestigious awards. We were nominated by our tutors and won The Dean's Prize for Outstanding Student Achievement which was nice. I also bagged the Best Dissertation Award and The Alan McGregor Award too which is given to the mature student who has made an outstanding contribution to University during their time there - go me ey, a hat-trick of awesome!

We were slightly worried that our prizes were something like Boots or Poundland vouchers but instead we got a cheque for £50 each, and then I also got two £50 Book vouchers. Maybe I'll purchase 50 Shades of Bullshit or Twishite with them eh girls? Nahhh, I can't see that happening in all honesty so they shall go toward my impending Master's degree book buying activities. So all in all a good haul I think.

The main graduation ceremony lasted about an hour. University dignitaries congratulated us all and gave speeches and so on, then our moment of glory came as we ascended the main stage to shake the Dean's hand. This bit was really surreal as I think everyone was concentrating so hard on not faceplanting the stage and tripping up over their gowns that it now seems a bit of a blur looking back. This was especially true of the girls as most wore the most ridiculous shoes ever and yet they all managed to cross the stage without faceplanting (good skillz girls!). I scooted over without any mishaps too and gave the waiting audience and my family the thumbs up (classic celebratory stylee), before slapping a firm manshake on the Dean so he knew how I rolled and then went back to my seat.

After that, it was time to drink! I hung around for a few hours seeing tutors and chatting to friends for what will be the last time, or not for a very long time again anways and I was really chuffed to see everyone so happy and celebrating with their families. Once everyone had snapped and papped us all to death we ditched our caps and gowns (it was sweltering in them with the heat!) and we all made our way seperate ways home to prepare for evening drinkage in Leeds once everyone had gone for their family meals and such like.

I had a quick log in to Faceache once home and was chuffed to see friends from America had logged in to watch the ceremony which was streamed live along with countless congratulatory messages and compliments stating that I apparently looked handsome in my gown even though I was sweating like Katie Price at an STI clinic. Ewww, what a horrible comparison I just made.

So yeah, here's me being all proud and shit with my first class honours degree:

I guess I am really proud in all honesty. I had the worst time in my final six months of university which makes my final grade all that more special as I really doubted I would get there at one point. I split with The Girl right before New Year's Eve, did the whole heart broken thing, lost loads of weight (yeah, it happens to guys too) and was then struck down with a serious CF-specific virus in early May on top of all of that.

I remember when I was in hospital at that point, my lungs were down to 25% which for those that aren't aware is pretty serious and I was just finding everything a little bit difficult if I do say so myself. I wondered if that period of ill health at that time would drag my grades down and also scupper an exam I was trying to prepare for whilst I was in hospital.

But, thankfully it didn't. I somehow managed to write my dissertation from my hospital bed in 10 days with zero rewrites and I gained an 84 mark for it too. I also aced the exam I had to prepare for as well which was a shock as I thought I was done for and really didn't want to sit it. I remember walking into the exam room the day after discharge from hospital and thinking, ''there's no fucking way I'm passing this one after being a druggy mess in hospital for the past two weeks.''

Guess what though? I got a 74 mark for the exam. Fucking get in *victory fist punches the air*

I'm just glad I didn't give in and battled through. I worked hard in some of the worst circumstances i've had to endure, both in my personal life and my academic life and made that shit my bitch. Fuck yeah.

The night out round Leeds was more low-key than previous post exam drinkage, I think everyone was knackered as it had been a long and draining day but we still managed to smash some champers:

All in all it was an ace day. I even got a cheeky snog too from someone who I was supposed to go on a date with a few weeks ago as she was out in Leeds that night, which was nice. That reminds me of the Fligh of the Conchords song 'A Kiss Is Not a Contract' haha. YouTube it if you don't know what I'm talking about.

So, what else has happened this week?

One of my good CF mates I've gotten to know on Faceache only went and got her call for transplant on Thursday which is AMAZING news as she was seriously ill indeed. She's ace and has been fighting so hard like a trooper to stay positive despite being so seriously ill at end-stage, so it was brilliant to hear she had recieved the call for some shiny new lungs. She is recuperating well and her blog can be found here which chronicles her journey:

It is definitely worth mentioning that thoughts go out to the donor's family who had to lose a loved one in order for this to happen. If you want to join the organ donor register and help save lives then here's the link:

Saturday was a mixed bag. I attended a soiree at my good friend's house in Wakefield. A family BBQ to celebrate her achieving first class honours and the award I mentioned earlier. I had to leave earlyish as my back was aching from my chest being bad at the moment which pissed me off a treat as I was all set to party for a few more hours. I'd already necked some painkillers at the party and they didn't even touch it so I knew it was best to go home and get some rest. Fuck you CF.

It is SO frustrating at times when it starts fucking over you doing stuff you enjoy and I was in agony by the time I'd got back to Leeds so I necked more painkillers and hit the sack. In bed for just after 11.30pm on a Saturday night. Fuck my life!

I'm feeling pretty vile mood-wise today as a result so think it is time for more IVs as I am in need of a boost. My spirits and energy levels have been flagging for weeks now so I should be admitted to recharge my batteries. I have my checkup on Friday so I'll get that sorted then. Handy timing so I will be back to my normal cheery self and ready to party for my 34th birthday in September which is another achievement, and then the start of my Master's degree which I'm gonna' rip that bitch's panties off and ride her on the love length train to success - fuck yeah!

Whatever that means.

Peace out motherlovers.

Sunday, 22 July 2012

To Know Me, Is To Understand Me. Maybe.

Wow. One blog in and I'm suddenly a combination of Oscar fucking Wilde (without the bum sex) and ol' Bill Shakespeare (god rest his soul).

So many thoughts and things to write about. Here's hoping I can keep this up and not fade into obscurity ey, because you know, internet fame is the shit these days, right?

I was inspired to write this blog as I recounted the countless times people often get the wrong impression of me which in all honesty I find hilarious.

If you know me 'in the real world' or even have added me on Faceachebook then you'll probably have thought I'm a cunt at one point or another due to the things I say and post. Which is great, because I am. Not in the negative, tossy, fuckwittery sense like most people are these days. I mean, let's be honest we all know a cunt don't we and their masses seem to be growing exponentially daily at an alarming rate, whereas genuine, decent people seem to be on the decline.

Maybe society is in a state of devolution. Behold the Cuntocalypse. Hmm.

Anyways, back to me.

I am brutally honest in all areas of my life. Always have been, always will be. I can hands down say that is one of the most beneficial things which has come with being born with a terminal illness such as Cystic Fibrosis. I am truly grateful for that outlook too. I just cannot be arsed lying or pandering to people, or their expectations of how they think we should all act and behave. The older I've gotten the less I've cared about offending people too. Life is just too bloody short for tolerating fuckwittery in my book.

Fact is, most people are full of shit and lie their arses off daily about the most inane and stupid things, and that kind of stuff boils my piss as I just don't see the point in it. There's even some cultural theory that backs this up (one of the reasons I fucking loved my degree).

In 1959, a sociologist called Erving Goffman wrote a book called The Presentation of  Self in Everyday Life in which he proposes that human beings use theatrical performance in their daily face-to-face social interactions.

Goffman proposes that we all have two distinct regions, a stage managed front and back region. For example, say a well-known celebrity projects the image of being a clean living, happily married man or woman and then they are revealed via the press to be a drug addled cheating fuckwit which is often the case for most of them. Ugh celebrities, definitely need to write a venomous blog about why I hate most of the pointless oxygen thieves at some point.

If you think about your own social interactions for a minute with people I guarantee you can think of occasions where this theory rings true. I mean, just look at how much women bitch about their mates or other women as a shining example, or how much you have to tolerate that cunt you work with who you secretly despise and wish dead on a daily basis. It is human nature.

I guess what I'm saying is that I have a truly unique perspective on the world and life in general. Even more so now I'm getting older with CF and face a very uncertain future. I rebel in the face of normal expectations, assumptions and just the general mind-numbing boringness of most people these days (boringness is totally a real word by the way).

I seem to have very little of a front or back region (sorry Erving mate). I don't have one of those switches in my head that stops you saying what you think. Mine seems to be permanently on 'speak your mind' mode. Often with offensive and hilarious results.

I love life, I love taking the piss out of myself, people and situations every day as it is true that a day without laughter is a day wasted. Inappropriate humour is the best kind of humour for me and pretty much most things are fair game to be poked fun at.

I'd also admit that my cunty demeanour is a test. If people can hack it and give as good as they get then they are pretty much in my awesome book. And those are the type of people I want in my life.

Those with spirt. And passion. And vitality. And most of all the sheer balls to say what they think.

I know so many people who have so much shit going on because they choose to surround themselves with shit, weak and dodgy people and I'm fucked if that is ever going to be me. I have an extremely low tolerance for bullshit, drama and just the general stuff that we all hear people bleating on about everyday and think, ''who fucking cares you stupid cuntnugget?''

So, in closing statement to the court, yes I'm a cunt your honour. I may well be the cuntiest cunt to ever cunt a cunt in all honesty. But, before judging, take some time and think, or attempt to understand that in the face of insurmountable odds I just want to enjoy life and embrace it. as we all should but so often so very few of us actually manage to.

That's not an excuse by the way, I more than welcome criticism and appreciate being told off sometimes as we all need it.

In short, I'm a good cunt and if you're like me then you're very welcome in my life.

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.