Happy Anniversary

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.

Yours Sincerely...

Hi I, Hi C! *waves* I'm so glad that you guys have found my blog and are continuing to stalk me up online, and all because you know that you've been very silly people indeed and are pissed that you've been both caught out, and called out on your disgusting views.

For anyone who isn't clear what's going on here regarding the comments on my previous blog then here are the facts, pure and simple which can all be backed up by screenshots.

So, a few weeks ago on Facebook I saw that I had posted a mind numbingly dumb and incredibly ignorant status mocking the plight of Syrian refugees not long after the horrific stories and images of dead children washing up on beaches and people attempting to flee to Europe for their lives were all over the world's media (and rightly so). I's comments were racially tinged and he often comments similar stuff on his Facebook. Now after seeing plenty of mindless stuff like this over the years I decided that my eyes could no longer be exposed to his stupidity so I deleted him. However, this wasn't before screencapping the aforementioned status and posting it on my main page.

Now, in his status he said something along the lines of ''why are people trying to come over here if they can afford HD brows doing'' and hinted that Syrian refugees fleeing from horrific circumstances were basically bullshitters and just trying to come to the UK and other countries 'for da benefits and jobs' suggesting that 'we' should 'look after our own first' and 'more people should die'. It's the same tired, thick and ignorant rhetoric that those decent minded members of society witness every single day and quite frankly makes my teeth itch.

Anyways, so yeah I posted his delightful status on my Facebook and captioned it asking anyone who held the same beliefs as this c*nt should delete myself from their Facebook. I also added that his wife (C) should sort her own eyebrows out before I mocked refugees in an attempt to validate his ignorance and hideous views. I added a photo of them both to the thread and people on my friends list looked at the evidence before them and made their own minds up that both of them were really very silly people indeed.

Laughter ensued and jokes were made, that was that. Nothing more, nothing less.

A few weeks later I had gotten word of my actions and then decided to take offense, posting his own status asking for people to let him know where I live or work so he could 'sort me out face to face' and calling me a fanny which was met with amusement and much laughter as I mean, really? You're going to go track someone down because they took the piss out of you and your wife's eyebrows but it's completely ok for you to mock and laugh at innocent people running for their lives?

Double standards much?

I then decided to start inboxing me in a threatening manner, telling me he knows where I live, he's going to come and 'sort me out' and 'make me apologise' and so on, and so on. He even attempted to track my location using Google and had his Navy friends try to add me. As if he thinks I'm dumb enough to do so. Please. When he eventually realised that I don't scare easily, or maybe he realised that being in HM's Navy that he really should conduct himself in a more appropriate manner as it is obvious that he needs to brush up on their equality and diversity guidelines he blocked me on Facebook and that I thought was that, until he started leaving comments on my blog like the one above and C decided to join him.

Also, I think that wishing that someone does not get a transplant is pretty much wishing death on them so by publicly posting that you've really just proved how hideous you are.

Here's hoping that you're not on the organ donor register I as it would be pretty ironic if I were to receive your lungs in the event of your death. Hmm. I'm sure that you'll both be reading this at some point guys so let me reiterate what I told I via inbox. I could not care less what threats you make, what supposed actions you think you can take. I have nothing to hide. I have evidence to back up everything that has been said. If you continue to spout your bile then I WILL email all of the screenshots to I's Commanding Officer in Yeovil.

Here are the Royal Navy's equality and diversity guidelines guys, I strongly suggest that you read them and think very carefully about what you post online in future. Ok? Oh, and I'm fully aware of the laws surrounding social media and nothing that I have done is illegal ok. Ta.

Thanks for the entertainment. Yours sincerely, Andrew. xoxo

HM Navy's Ethics and Diversity Guidelines: http://www.royalnavy.mod.uk/equality-and-diversity

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

Back Once Again with The Renegade Master!

It's been aggeesss since I've blogged on here! I keep feeling the urge to write and then, well, life just gets in the way really, or I'm too busy enjoying it to be arsed sitting at my laptop writing. A lot's happened since I last blogged though so I *promise* to start blogging again a bit more. I know, I know, I've said that I'd return to blogging more times than Christians have awaited the return of Jesus but you know, it's me so I'll get around to it eventually. Scout's honour and all that.




Anyways, here's a short video which focuses on the treatment regime of people with Cystic Fibrosis, have a watch.

This is Cystic Fibrosis from Aram Chalmet on Vimeo.

No Future?

So, yesterday was a pretty significant day in the Cystic Fibrosis community. Vertex pharmaceuticals in the USA announced very promising data from their phase three trials of a combination drug that will treat the genetic cause of Cystic Fibrosis directly. The data claims that if and when the drug should become available in the US and EU markets that it *could* offer suitable patients with the double delta DF508 gene mutation anywhere between a 6-10% (or maybe more) increase in their lung function and see a decrease in the amount of time spent in hospital as it seems to also reduce the amount of exacerbations of CF too.


People with the double DF508 gene mutation make up about 50% of the CF community.


What does this mean? Well, it's a bona fide scientific breakthrough as, since now, all medicines and treatments have been tailored towards treating the underlying symptoms of Cystic Fibrosis - this would be the first drug ever to attack the cause directly. The real world implications of this could be staggering indeed, young children born with CF could now take this drug and live a whole and normal life, requiring much less treatments and time in hospital and experiencing much less serious long term damage to their lungs, perhaps for some, none at all.


And yet, I'm not jumping around with happiness... I don't really feel anything about it. Should I?


Undoubtedly this is a major scientific breakthrough the likes of which have never been seen before and I'm glad that many people won't have to go through many of the horrible things that I did growing up. However, part of me feels angry too. There's a lot of people throwing the words 'miracle cure' around right now, people are elated with the news of the breakthrough, which is completely understandable. There's lots of hope and there's lots of optimism that this drug will lead to other drugs and new treatments and that this whole process could potentially be the first baby step towards an eventual cure for Cystic Fibrosis.


I guess, being the super dooper realist that I am I'm just deeply entrenched in cold, hard reality. If the FDA approves the drug in the US it will probably take between 8-12 months to do, then subsequent approval has to be sought in Europe too which will most likely take another year. Then there's the question of whether the already under strain budgets of the NHS can afford to purchase it. There's all kinds of cost quotes flying round right now, some say in the US it will cost anywhere between $160-250,000 dollars per course of treatment for each patient so it is likely to cost a shitload in the UK.


Another issue is one of what about the people who don't have the double DF508 gene mutation? They continue to wait and hope for a similar breakthrough as that's the problem with genetic diseases like CF - any breakthrough in treatments invariably denies another group within the community as it is just that complex to gain any ground on. Irritating bastard that it is.


My anger is for those of us who the drug offers very little for, the older people with CF who have struggled and fought their way into adulthood. Those of us close, or already on the transplant list, and yes, those of us who have already lost the battle.


Time is always against you when you have Cystic Fibrosis, and discoveries like this are too late for many. I can't help being angry about that. I'm not 100% sure if I qualify for this new treatment *should* it become available, my CF unit are busy attempting to categorise people's secondary mutations if they have them so I'm sure they will tell me once they have assessed the information. I'm more concerned that If I am viable then by the time the drug is approved and if the NHS can fund it what state will my health be in by then? 2-3 years is a lifetime away right now, despite me doing really well and busting my balls to stay that way with another transplant assessment coming up.


Don't get me wrong, I'm happy and recognize the massive importance of yesterday's breakthrough. I just wanted to share some thoughts about the harsh reality of how it will affect the CF community as a whole.


*throws gang sign with hands and struts away from laptop*

That Time When I Experienced Disability Discrimination

Hey guys,


So, as some of you Twitter and Facebook followers know, me and H went to the Kings of Leon concert at Sheffield Arena on the 18th June and things didn't go quite to plan. In a nutshell, we arrived at the arena to find that our pre-booked disabled seats had been given to a non-disabled couple who were claiming a 'bad back' after booking sto. After much explaining of my condition and state of health we were then forced to move allll the way around to the other side of the arena despite several further explanations that this would be potentially dangerous for me as my breathing wasn't great.


Still, we were forced to move.


I wrote this letter to the arena manager to complain:

Dear Mr O’ Shea,

I am regrettably writing to you to make a serious complaint about the way in which myself, my carer and partner, H were treated during our attendance at the Motorpoint Arena on Tuesday 18^th June 2014 for the Kings of Leon concert. On arrival at the concert we were greeted by friendly and helpful car park staff which lessened the extortionate blow of being charged £20 for a disabled parking space.   

On entry to the arena, friendly and helpful door staff showed us to the disabled access lift which led us to the level on which we had pre booked our disabled seats many months ago. On arrival at seating bay 116 which hosted our seats we were dismayed to find that our seats had been willingly given to a non-disabled couple. Myself and my partner explained to the Showsec steward that we had booked our tickets months ago and that the couple were wrongly seated in our seats. He apologised and called for a supervisor who turned up and we explained to them both about my disability, Cystic Fibrosis. If you have no knowledge of this disability then please allow me to explain. I was born with Cystic Fibrosis and it is an incredibly serious lifelong terminal lung disease which affects all of my major organs. It constantly fluctuates and I spend a huge amount of time every single day undertaking an invasive and exhaustive treatment regime which also results in frequent long hospital admissions. There is no cure for it and it will not get better. I am now clinically at the end stage of the disease meaning that I am not expected to live longer than the next 2-5 years without requiring a lifesaving double lung transplant that I am currently being annually assessed for. In short, I am dying.              

As a result of being at the end stage of Cystic Fibrosis I now have to wear a heavy portable oxygen backpack wherever I go, 24 hours a day as my lungs are seriously damaged and currently operating at 30% capacity which is equivalent to the air within 4 empty cans of fizzy drink. Once we had explained my health situation to the Showsec supervisor he left to arrange alternative seating and then returned and asked myself and my partner to move to seats on the opposite side of the arena in seating bay 107, directly opposite where our pre booked seats were. We explained again that I would find walking to the other side of the arena very difficult indeed as I had just walked into the arena from the disabled parking spaces which in itself for somebody in my condition is quite a considerable task and dangerous for me. We were still asked to move. The couple who were wrongly seated in our seats claimed that they had booked standard tickets and then as the male had ‘injured his back’ since booking they had been given our seats to sit in. The only solution that the Showsec supervisor offered before moving us was that were we to go and discuss the matter with the customer information staff who I believe were named Carol and Sam.                                                                                                                                        

This is completely unacceptable for a number of reasons. As we had spent the best part of 15 minutes explaining our situation to the Showsec stewards and supervisors, and then were forced to walk around to the other side of the arena which made me very breathless and requiring my medical treatment to be administered by H such as inhalers until my breathing calmed down some 15-20 minutes into the Kings of Leon’s set it incredibly soured and spoiled our first visit to the Motorpoint Arena. The whole thing had gone from being an event that I had paid great expense for and were very much looking forward to for months, to one of stress, disappointment and emotional upset - none of which were our fault. Once Helen had made sure that I was ok and that my breathing had returned to normal she had to leave me to deal with the staff at the customer information point that were initially cocky and frosty in demeanour towards her. Once she rightly explained the whole situation to them they were incredibly apologetic and admitted that the incident was a huge mistake and that it should never have happened in the first place, advising us to write an email which I will do alongside this letter. However, to add insult to the already soured evening, once we had been seated in our replacement seats which as I stated were directly opposite our original ones, I witnessed the male from the couple get up, walk around freely and go to the toilet unaided with my own eyes which made me doubt his ‘bad back’ story.                                                                   

It seems to me that your staff are not correctly trained in how to deal with disabled people, there seems to be a mind-set prevalent that ‘if you’re not in a wheelchair then you’re not disabled’ which is wrong and highly discriminatory in nature. This especially seems to be the case when you consider that we explained my very serious health situation several times over to all parties and not once were we neither offered seats nor was action taken on our behalf which would and should have been to move the couple who were wrongly seated out of our legitimately booked seats. The evening was very distressing for me and my partner and I very much doubt that we will be returning to the Motorpoint Arena in future as it was an experience that was in no way justified when considering my serious health condition and the fact that tickets and parking charges amounted to £141. I expect a better level of service for that amount of money as it is a lot indeed for someone to afford who is too ill to work and reliant on my disability benefits to survive. I also expect to be treated as equally as non-disabled customers are which as you can see me and my partner clearly weren’t. We have been to many different venues and gigs as it is one of the few things that we can do together which help us get through the toughest of times living with a terminal illness and we have visited Leeds Arena, o2 Apollo in Manchester, Bingley Festival and the Leeds o2. They have all been absolutely fantastic at supporting the needs of disabled people, provide friendly and helpful staff and the facilities are second to none. For instance, Bingley Festival offers a dedicated team of ‘Event Buddies’ who will collect drinks from the bar for you to avoid long queues and the Leeds o2 have their disabled seating area upstairs so it is nearer lift access and a quieter bar area. All the aforementioned establishments also offer free tickets for carers to be able to attend gigs and concerts with their disabled friend, family member or loved one too. Those may be areas of improvement that you may wish to review in future along with the extortionate £20 charge for a disabled parking space in the name of equality and fairer access to facilities for the disabled which you are legally required to do under the Disability Discrimination Act 2010. It is a shame that Sheffield’s Motorpoint Arena has not lived up to these high standards too.

I would like an explanation in writing of the above incident.

Regards,

Andrew Ward.


I emailed a copy of this to the customer services, and received this replay some 48 hours later:

Dear Mr Ward

 

Thank you for your email.  I was disappointed to read that you had cause for complaint.

 

We do not charge £20 for a disabled space.  All of our car parking spaces are £5.50 when bought in advance and £6 if bought on the day of the event.

 

I passed your email on to our Head of Security who has investigated and I have since had a report from the Showsec supervisor in the area.  It is true that we had relocated 2 people to the seating bay in which you were allocated 2 spaces.  This was a mistake by a member of our box office staff and may I take this opportunity to apologise on their behalf.  However, the Security Supervisor offered to move these 2 people to another bay, but says that you said you would go to the other bay instead.

 

We have to take people at face value.  If they say they have injured their back and ask if we can help them, then if it is possible we will help them.  On this occasion they should have been located in a different seating bay, but there were spaces available for anyone who had been injured since they purchased their seats.

 

It is incorrect to say that our staff are not trained to deal with the disabled.  They are trained in all aspects of customer service, including dealing with disabilities of all kinds, and not just wheelchair users.

 

Regarding seats for carers, prices for our shows are set by the show’s promoter, and the vast majority do not give free seats for carers.

 

I am sorry that you were disappointed with your evening at the arena.

 

Yours sincerely

 

Joe Waldron

As you can all see, their response was dismissive of my genuine complaint and eloquent explanation, and it comes across a tad arrogant and completely insincere. It's obvious that we have a 'you said/they said' situation now between myself and the arena staff and I expect that this is where they think the matter will end. They're wrong.

My grievance is as simple as this, pre-booked disabled tickets should not be given away to anybody else, no matter what the circumstances, and especially not when over £100 had been spent on them. It's disgusting enough that disabled people are charged more than the able bodied in the first place for access to cultural events such as this so why should we stand for that access to be denied because somebody claims that they have a 'bad back'.

I think my next course of action will be to take the matter to the higher ups at Live Nation - the promoters and if I get a similar response to this then I will have to contact the papers because, remember fellow disableds, nobody gives a shit about you if you're not wheelchair bound. I mean, that's the gist of what this disagreement is, am I right?

Let me know your thoughts, or possible advice for solutions below.

Cheers,

Andy.

Guest Blog on Josie's Journal

Hey all, so I was asked to write a guest blog by fellow CFer and all round lovely person Josie as part of CF Awareness Month in May. In the UK we normally have CF Week every year, but this year The CF Trust has chosen to promote a year long 'No Party' campaign as they turn 50 and don't really want to celebrate being that CF is still wiping us all out. I know, it's a different kind of campaign but I suppose it is their choice on how to focus their efforts.






ANYWAYS, as a result of this many UK CFers are hijacking the yanks CF Month that runs all throughout May in the good ol' US of A to do their bit and fight the good fight and so on.




So yeah, Josie asked if I'd write something for her so here's the link pretty much. Let me know what you think and check her blog out too: Josie's Journal
















Thanks,


Andy.

No Make Up, No Awareness, No Hope For The Human Race

I posted this today after I'd woken up from very little sleep with a banging head 11 days into my IVs and was then confronted by hordes of ego boosting selfies on Facebook . None of them had any info on Cancer, or how to donate, or how to do anything apart from nominate a mate to show solidarity. I think something's been lost in the message and as my old friend Marshall McLuhan said 'The medium is the message'. Oh dear.

 

Anyways, it pissed me off so I wrote this and set it as a status:

 

 

I'm going to have another *long* rant about this whole no make up crusade by narcissistic bell warriors who insist on raising awareness of awareness by posting selfies without any kind of detailed medical information regarding cancer or links to donate money, you know, the two actual things that will make a difference to fighting The Big C along with giving up their time and volunteering for a can...cer charity too (I guess that's three things then). You want to know why it rags me off that social media trends like this pollute my timeline? It's because most people doing it do fuckall else the rest of the year but as soon as some trend hits Facebook and Twitter they're Marie Curie and Florence Nightingale all rolled up into one because 'lol' it gets them attention from their equally derpy friends too and they can give themselves an ego boosting pat on the back, thinking they're actually doing something without actually DOING something. You know, just like that time when they stopped Joseph Kony, stopped child abuse by changing their profile pictures and such like - all hail the power of the internet and Facebook likes! Charities have spoken out about how it is damaging to proactively helping and there's even a name for it now: slacktivism. I'll be honest too, most of you will willingly join an internet crusade but when it comes to anything to do with CF you give zero fucks. I constantly post links to information, fundraising opportunities and stories about how the CF Trust receives very little at all and you all stay silent. Your silence damns you. You're all quite happy for me to entertain you and to laugh at my offensive outlook on life but when I post anything serious about CF - there's nothing, no response, no crusading, zilch. Now, I know that I'm a massively opinionated knobhead and not the easiest person to understand in most people's eyes but of course, what will happen is you'll wait until I'm critical and desperately in need of new lungs to live, or worst case scenario you'll wait until I die and THEN you'll all become charitable crusaders on my behalf, tribute nights, fundraising, organ donation sign ups, swathes of comments on my Facebook wall about how much I meant to you and how much you miss me - all in honour of your good friend Andy. I mean after all, you're all constantly entertained by my give no fucks attitude to life and straight talking demeanour you lap that shit up but, oh look, when I discuss the very real possibility of my death being that now I'm at end stage you're all passive and apathetic to helping the cause which has kept me alive this long which does absolutely fantastic work with very little trendy media campaigns, celebrity support and Facebook/Twitter bandwagons. It just doesn't sit well with me, case in point that it's usually only people with CF or their families who donate on the links that I do share and that's just wrong in my eyes. You all know mine and my friends situation and you should all be doing more if you genuinely care about me. Any of you could have a child with CF at any time, or you could be a carrier of the CF gene so CF could very likely affect any of you or someone you love at any time but of course THEN you'll care won't you? As I said this is aimed at those of you who do NOTHING most of the time, my own father and aunt are both currently undergoing treatment for cancer so before anyone accuses me of being insensitive to the disease I'd like to circumvent that with a big fat fuck you. I just haven't felt the need to bleat on about it via Facebook ok? If you're offended by the truths in this status then, well, I'm not bothered to be quite honest as everything I've said IS true and I've been wanting to say this for some time indeed. To those of you who have survived cancer or who do actually fundraise at other times and not just when the internet deems it cool to do so then well done. Peace out.

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.

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.

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.

 

 

 

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.

Ugh.

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!”

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.