You're Only Allowed to Die With A Smile On Your Face

So this is something that's really pissing me off lately. I guess it has become more of a prevalent topic for me to notice, and in turn analyse since I went active on the transplant list nearly a whole year ago (!) and it seems to be an issue that is constantly reoccurring. In a nutshell, it seems that you're only allowed to die if you're doing it in a super positive way. What do I mean? Let me go back to the beginning. I've always known that death was an intrinsic part of having Cystic Fibrosis. I think I was first exposed to it when I transferred from paediatric care to adult care at around the age of 16. Before that if you were in hospital and someone that you knew had passed away you were merely told that they had 'gone home' which I completely understand as it's really hard broaching the topic of death and mortality to a bunch of kids who spend long periods of time in hospital with as vicious a disease as CF. I think the first couple of times that I experienced death during the early years of my stay at my adult CF unit it was through conversation with other patients, some of them had lost siblings or other friends and it just kind of came out in conversation during the many late nights when we were all allowed to mix. I remember that it was generally just accepted by the hedonistic group of patients that I fitted in with who used to make their hospital stays as enjoyable as possible via whatever means that they could, none of which I can go into here as my lips are forever sealed. Let's just say that you wouldn't believe some of the stuff that we used to get up to. I just fitted into that mindset and attitude to life perfectly as it reflected my own personality and beliefs of just getting on with it and trying to enjoy every iota of being alive that I could, for as long as I could. There were other groups of patients at the unit who were insular, or complained about every aspect of hospital life and having CF and I just couldn't be arsed with those types, I still can't to this day so that's something that hasn't changed at all. People LOVE to complain, and some poorly people LOVE to complain a lot. Personally, I see those types as whiny cunts. Just my opinion. I don't think I every sat there thinking, ''oh shit, I'm actually going to die from CF one day'' as we all used to take the piss and mock it all, even death which is where my sick and un pc sense of humour developed. A lot of people with CF have this and I 100% believe that it has saved my life and their lives countless times. It's true that if you can crack a joke in the darkest of hours then you can pretty much get through everything. That's not to say that it doesn't take it's toll on you, believe me it does but it helps, it really helps as an outlet so you can release some stress and then refocus on making sure that you don't join the rest of the fallen. Well, try your best not to anyhow. One memory that does stand out from my formative years in hospital was when I needed a course of treatment and there wasn't any beds free on my specialist CF unit so I was given a bed on the outlier ward until one came up. This was probably the first time that I was properly exposed to death. One night I needed the toilet which was situated at each end of the ward so I left my room in the early hours and slowly walked down the ward glimpsing into each room as I passed. You'd often see some sights like old people crapping on the floor right next to their commodes, generally not giving a fuck and undertaking some kind of dirty protest at the fact that they didn't want to be there even if it was for the good of their own health. One even escaped once to buy some fish fingers in the local town centre and was brought back in their pajamas by the police but that's a whole other story to tell. Anyways, where was I? Oh yeah, so as I walked down to the toilet I looked into one room and saw a person with the sheet pulled right over them, I'd seen enough horror films to realise that they were dead and I felt a chill down my spine and just thought, ''oh fuck'' and nothing particularly profound. The worst bit was that their arm wasn't completely covered by the sheet and was slightly hanging out of the bed. Like I said I had seen enough horror films so rushed to the toilet and completed the quickest late night piss that I've ever had in my life whilst also trying hard to not shit myself and looking around in case some kind of pensioner zombie rolled up and attempted to bite my increasingly shrinking dick off. It wasn't a nice feeling at all. It was the reality that there was an actual bona fide dead body a few rooms away from me. It was chilling. I went back to my room and just thought about it logically for a bit, I was on a ward of predominantly old people and old people died. It was as simple as that for me. A few admissions later I was again on the outlier ward but had taken a stroll up to my unit to use the dayroom facilities that we had and shoot some pool. As I was waiting for the security door to open a trolley came out being pushed by a porter with a body bag on it, again covered by a sheet and again chilling me to the bone. I guess it was just unfortunate timing as I know that hospitals generally try to move the bodies of people who have passed during quieter times to cut down on these kind of incidents but it was around mid day and there wasn't really anything that they could do. I felt slightly different than I did about the old person passing away on the outlier ward as this was someone else with CF, a fellow patient, not one that I was close to thankfully but still someone with CF was dead and their lifeless body had just been wheeled right past me. The worst bit was seeing the sadness and pain on the faces of the staff as they are often all so super professional I had seen the real impact on them of doing such a difficult job as working on a specialist CF unit where unfortunately death was par for the course as part of the disease. I reckon those two experiences and the people that I had become friends with on the unit shaped my mindset of, ''well, there's not much that I can do so fuck it. I'll do my treatments, kick arse and see what happens'' which is all I could do really. I think I owe a lot of my mindset to how I was brought up too. My mother never really made a fuss of me having CF which helped loads, not in a bad way but I never used it as an excuse, or to think that I should be treated differently because I had it like LOADS of people with CF do these days. There's the whole 'i'm a precious little snowflake' mindset within a lot of people these days which I find nauseating, attention seeking and quite cunty to be honest. Back to this death thing then, over the following years as I grew up into adulthood I lost a lot of friends and fellow patients in hospital, 100s of them to be honest so death and dying became a really normal part of life for me. I think part of the problem is that most normal people lose an elderly relative, or a parent during the course of their life whereas a lot of people with CF lose countless people. These people are often the only ones who have any kind of insight into what living with the disease is truly like and so your mortality is constantly reflected back onto you. the unpredictability of CF is paramount to shaping your viewpoint of death as you could leave a friend in relatively good health after one admission only to return a few months later and find out that they've passed away after a particularly bad infection. The foundations with which you view life, death and everything are built on quicksand, often suddenly changing and reforming as a new landscape which you have to relearn how to navigate in order to keep sane. Unfortunately, there's nothing that you can do about your CF friends dying. One of my CF psychologists theorised that I subconsciously accepted this and just decided to get on with it all. I found myself over the years becoming numb to it happening as the group of friends that I made when I first joined the adult unit at 16 dwindled and dwindled. I guess I probably did it to survive as you can't let yourself get caught up in the emotion and upset of it all, being that it happens with such frequency that at times you'd be losing friends every couple of months. You have to put yourself first to survive so that's pretty much what I did. I'm nearly 38 now and I can probably name on one hand how many long term CF friends I have left that I've met and known since I was 16. I recently lost one of my oldest friends of 20 years and it crushed me but there's not many left at all now. Fast forward to the original point of this blog now though. When I was put on the active transplant list I let everyone know that this was the point of no return just as I always had as I've always tried my best to present an open and honest picture of what life with Cystic Fibrosis is like. I've never done this for myself, I've wanted to be as open and honest as possible to help others understand but I fear not many people got the memo on that one. I see a lot of people posting things on social media and a lot of their stories are ridiculously over the top and nauseatingly positive about end stage Cystic Fibrosis and being on the transplant list. It generally feels like nobody has the balls to show the real, hard hitting side and I find that incredibly frustrating and, if I'm being honest, a little bit cowardly too. End stage isn't called end stage because it's a fluffy part of life that is filled with rainbows and puppy dog tails. It's called end stage because if you don't get a transplant then you're going to fucking die. Simple as that. It's the cold hard truth and the clock is ticking. And yet, nobody really wants to talk about it or engage with you on the subject or even the fact that you have to consider your mortality now every single day. That seems wrong to me, yes? You even get the charities and organisations that are supposed to be there to support you ignoring or shying away from the subject. Again, that's wrong in my book. To ignore, or shy away from death is to ignore those of us fighting so incredibly hard every day to make it when the chances are stacked against us, like really fucking stacked against us too. Nobody wants to talk to you about how you're feeling about how long you may have left, or how incredibly hard it is for you and your loved ones every single day, nor the incredibly strain on your mental health, major depression and incredibly high levels of stress that are constant and a huge drain on you on top of an already gruelling regime that you're forced into. In the last year or so I've had to do a lot of deadwood clearing of people from my personal life, I can't afford to have shit people in it anymore so I've culled quite a few people for very good reasons but still a lot of people just don't get it. Not many people call or text anymore to see how you are, people seem to just assume that if you're showing a presence on social media then you're ok which really couldn't be further from the truth. I can totally understand people being upset by what's happening but really if you stand back and look at things, shouldn't the focus be on helping the person with the illness who is dying and not pandering to the feelings of those who don't have it that can go home and forget about it at the end of the day? You don't get a break from things at this point, the treatment burden is massive and all consuming running your life from morning until night. Inevitably you're left alone, or with very few people to be able to talk to about end stage life. It's made even harder by the fact that not many people make it to transplant stage or through one so there's not many others that can offer an understanding opinion on things and some empathy. There's no room for excuses anymore though. As a society we are fundamentally failing not just people with Cystic Fibrosis at end stage but also anyone who is faced with the end of their life. It's staggering to me that we spend so much time and effort of bringing people into this world but really seem to not give a flying fuck about those of us on our way out. We're all going to die too so just why is it that people can't man up and discuss death in a mature and understanding way? There are so many people suffering alone and things REALLY need to change. Fuck the overly positive people too, you're not helping anyone and you're lying to yourself living in cloud cuckoo land. NOBODY is super dooper positive 24/7 when they can't even breathe whilst having a poo. They're just not. I'm not saying be a miserable fuck about things if you're at end stage but at least be honest, and don't be scared of being REAL about it all. It's such a headfuck and emotional nightmare that people need to know. Since I've started speaking out about this I've had so many people tell me that they agree but they have no voice or representation. A lot of CF parents have said that they fully want to know what to expect in the future if things don't work out so the fact that The CF Trust and other organisations seem to focus solely on the young and not being more honest about end stage because they don't want to upset the CF parents is not cutting the mustard with me. As a community we're shite at supporting adults and those at end stage and it has to stop. I guess what I'm saying is that it is completely legitimate to be realistic and show just how awful things are at this point and I find it offensive that there's a real, palatable feeling off 'ooh, that's a bit grim let's ignore it and focus on being super happy alllll the time'. Case in point, when my close friend passed away recently the church was packed with people crying their eyes out at her passing. For the last two years of her life when she was isolated at home distressed very, very few of them made the effort to be there and visit. It disgusts me that this is a common occurrence. I'm living it myself so I know what I'm saying is true, In my opinion being like that doesn't help anyone at all. Awareness covers ALL aspects of life and death so let's start doing something about the latter. Talk about this shit, show people that you care and get involved with them - they might not be here for much longer and you'll only regret it when they're not. Peace out and don't die. Andy.

National Transplant Week 2015 - A Day in the Life....

Hi everyone. As it's National Transplant Week 2015 here in the UK right now I thought I'd dust off the blog to try and help to raise some much needed awareness of organ donation and the transplant process. As some of you may know I am now active on the transplant waiting list so I thought I'd try and get across an average day in my life and exactly what it entails. If anyone has any questions about Cystic Fibrosis, organ donation, or the transplant process then please feel free to ask in the comments. I hope it helps people to understand things a little better.

09.00am - I wake up exhausted no matter how much sleep I have, which is usually a lot less since going on the list. Bedtime brings thoughts about being on the list, if you'll get a call, about your friends who have already died and just how long you will have left if you do get a transplant. As soon as you wake up you have to clear your chest of the sputum which has built up overnight so there's lots of coughing and hacking which adds to the tiredness. I'm usually in some kind of pain too, if you sleep in an awkward position or slip down your pillows (I use quite a few now to prop me up in bed and assist my breathing) whilst asleep then you'll wake up aching so you'll need to take some pain relief which leaves you doped up so already a great start to the day. 

09.50am - the carer comes to help get my nebulisers, tablets and anything else together whilst checking that I'm ok. Whilst I'm doing my nebulisers which have to be spaced out at 30 minute intervals she makes me breakfast which I have to eat no matter how sick and exhausted I may feel. It's massively important that you keep a good weight on when you're on the transplant list as it is vital to getting through the operation and recovering well afterwards. She helps get my clothes ready whilst I'm eating and then I get showered. 

10.45am - Showering isn't as simple as it used to be. I have to wear my oxygen whilst getting showered now as it makes me very tired and breathless. I know that sounds ridiculous and it makes me feel like an invalid at times and I now have a shower stool so I can sit down. The worst part is that I have to rest for 15 minutes after a shower too to let my oxygen saturation levels return to normal and I literally don't have the energy to do anything else. I haven't lost my dignity yet by being showered by my carer but that will come, eventually. 

11.05 - I'm exhausted and desperate for a sleep. I can't have one though as I need to complete my morning treatment regime by taking my steroid inhalers which help keep my damaged airways open. 

11.15 - I still can't rest. I have to do a morning physiotherapy session. 30 - 45 minutes of exhausting breathing and coughing using a PeP mask. It looks a little bit like an old fighter pilot mask and helps open your airways so you can cough up more of the thick sputum filling your lungs. 

12.00 - I finish my morning physiotherapy session and I'm shattered. I now have a little free time. I may nap. I may read. I may watch something or play video games. I'm limited as to what I can do now. I'll usually have calls to make to oxygen companies, chemists, arrange appointments and such like to make sure that I'm fully stocked up with all of the things that I need to keep stable. 

14.00 - my carer returns for my afternoon call. I only have one nebuliser to take which is a slight relief. Whilst I'm doing it she'll make me an afternoon snack and drink, you gotta' keep those calories going in! Then I have my pulmonary rehab exercises to do. These are designed to keep your strength up whilst you're on the transplant list so it's stuff like standing press-ups, weights, walking up and down a step for 5 minutes, core strengthening. All to keep your muscles strong so you can recover from the transplant procedure. At this point however, it adds to your exhaustion so is very, very difficult to maintain. 

15.15 - I'll try and sleep, or watch something but I'm usually overtired and don't have much success, or my mind will be wandering so I usually come on here or Twitter and piss people off. 

16.00 - 18.00 - I'll try and get up and about the house to do some chores, sitting on your arse because you're ill is not an excuse and I need to stay mobile too but again, this is now very difficult for me and going upstairs makes me breathless. This is usually the time that the family are due home as well so I like to help out and still have Dad duties to attend to. It's hard because you want to support your family but you're exhausted from your daily schedule. If I'm relatively stable then I will make the family meal but more often these days Helen has to do it after a long day at work which upsets me as I just want to support her and provide for my family because I love them. I couldn't ask for a better family though as we all pull together and support each other so everything gets done, with teamwork, and love. 

18.00 - time for my early evening nebuliser. Just the one to help keep my airways open along with my early evening oral antibiotics. 

20.00 - 21.00 - the nursing team will come and see me. They come in a pair, one healthcare assistant and one nurse. They'll help me get ready for bed and get me anything that I need plus make up and set up my NG feed which I have to insert down my nose and into my stomach. The calorie rich liquid slowly drips through the tube overnight and gives me 1,600 calories whilst I sleep. I usually have it 3-4 times a week but sometimes more if my weight has dropped. This is because CF also affects your digestion making it incredibly difficult to put on and maintain weight. It often leaves you feeling bloated and full though which isn't great when you're attempting breakfast the next morning. The nurses will also get my evening nebulisers, inhalers and tablets ready too and thus, the cycle continues. 

21.00 - 21.45 - evening physio. By this time I generally really can't be arsed but have to force myself to do it, or Helen has to bollock me. It feels like an endurance test as I just want to rest. I want a break from the daily regime of treatment, medication and exhaustion. It pisses me off but I know that once it is done then I will finally have peace. I'll be in pain again so will require more pain meds as you're constantly battering your already weakened lungs every day, desperate to keep them clear and free of infection. 

21.45 - 22.45 - now I have free time to spend with Helen. We'll usually curl up together in bed, with a brew and watch something to laugh at on tv to give us some respite before passing out to sleep, or she'll fall asleep before me so I'll try and read to reclaim something for me in the battle for normalcy, but not before I set my feed off, hooked up to two machines and two sets of tubes coming out of me. One for oxygen, and one for feeding. I'll usually fall asleep at midnight. 

This is a snapshot of my daily life and it's often much busier than this. I don't know how long this will continue for. I do know that it will get worse and much more complicated the longer that I'm on the transplant list. I'm tired of this now. I need a transplant. 

Please sign up to the organ donor register and inform your family of your decision.

#‎CysticFibrosis‬ ‪#‎OrganDonation‬ ‪#‎Transplant

Redux

Well, it's been an age since I posted anything on here. 16 months in fact. November 2012 was my last post and in all honesty there's no real reason as to why I haven't kept up with blogging. I guess I just got bored of it.

I see a lot of blogs, bloggers and blogging in general via Twitter and most of it just leaves me feeling a bit 'meh' really. I find it really hard to be stimulated by the blogs which are just a poor excuse for the writer not having kept a diary when they were a teenager. The same goes for fashion blogs = yawn, celebrity blogs = yawn and so on.

Some of this boredom undoubtedly stems from the fact that a lot of the time I feel disconnected from society and the culture that the masses promote via the collective consciousness. I just don't find the stereotypical things that interesting which most people do and which most people fill their lives with on a daily basis.

New shoes? Nobody gives a fuck about the essay you wrote about them. Went out and got laid? Nobody gives a fuck about 10 paragraphs about that either. Writing about your favourite celebrities and how much you bum them? Go ahead, end yourself and save us all the inanity of reading your bile praising the talentless turds you worship because you have no ability to construct a meaningful identity of your own.

Don't get me wrong, there are some actual decent blogs out there in some dusty areas of the t'internet, and some great writers too. The next time I come across some I'll drop their links off for anyone interested in reading something different for once.

This isn't me proclaiming that my blog is some revolutionary new discourse that you all must read and praise either. Truth be told, I'm not bothered if anyone reads what I write, I'm not doing it for any other reason other than when I can be arsed, sometimes I like to write.

I do think I should at least 'try' to make more of an effort though. As I've said before if my blog can help one young person who is growing up with Cystic Fibrosis to realise that you can live a good and fulfilling life with the condition then I suppose that's a good enough reason as any to write.

I think I'll also focus on my personal interests a lot more too and explore some of the things that I like to do and fill my time with as I'm not just an opinionated culture bashing tosser all of the time for the most part.

So beware, I'm back bitches!

A.

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.

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: http://kimberleyliane.blogspot.co.uk/

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: http://www.organdonation.nhs.uk/ukt/default.asp




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.

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.