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

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!”