Privilege

[Paul]

Not sure we are actively favoured because we’re white, male and middle class but I’m absolutely certain that those who aren’t get overlooked or worse. Or is that just semantics?

[stringvest]

let me tell y'all what it's like, being male middle class and white...

 

[VERBAL DIARRHEA]

Working clas and proud. Fucking hell just dropped my iPhone in the Hottub.

[skend04]

The LSE had a talk on this called "Toxic Inequality in the United States: economic inequality and racial injustice driving ugly politics"

 

http://www.podbean.com/media/share/dir-cm4s2-370d1a7

 

There's a bit on the UK too.

[sir roger]

I made this business what it is, from scratch, hard work, toil, blood , tears and sweat.

 

 

 

 

 

 

 

 

 

 

And $6m from my father.

 

Reminds me of a documentary I saw with that Stelios guy , where he was saying that the EasyJet business was all his own sweat and toil & other than his dad giving him two planes to start with , nobody else was involved in his success.

[VERBAL DIARRHEA]

Reminds me of a documentary I saw with that Stelios guy , where he was saying that the EasyJet business was all his own sweat and toil & other than his dad giving him two planes to start with , nobody else was involved in his success.

Trump the same. Laughable lack of self awareness. Reminds me of Craig T Nelson in Get Hard.

 

"I built this company with my own two hands, me, this old computer and hard work. And a $8 million dollar loan from my father "

[Fabio]

My sister is currently working with a 6 year old with a muscle wasting disease he was fine at first but it's slowly taking over, he's frustrated he can't catch the other kids when playing and struggles with things he never used too. Hes going to get worse and by the time he is about 13 he probably won't be able too move very much of his body at all. He wants to be a racing driver.

 

My brother died age 21 of cyctic fibrosis when my sister was going to have a baby he said if its got cyctic fibrosis get rid of it, because he knew what living with it was like, pain, constant tiredness, hospitals and tablets but most of all knowing you have no future while everyone around you is planning for there's. My health is a privilege and my problems are minor and can be changed with some effort. I apologise if that's all grim but I force myself to take a step back as often as I can to put some perspective to where I am in life. I'm incredibly lucky and though I've got my own house, an okay car and money in my pocket thats not the stuff I base my life on. You'll miss your health, your family and your friends more than all the shiny shit in the world.

Im so sorry about your brother. I work on a cystic fibrosis ward, and have done for 8 years, so I've seen the heartache and horror watching relatively fit 20 year olds, turn in to shadows of themselves within 2 years. Ive always maintained I wouldn't wish it on my enemy.

 

And as fate has a twisted sense of fucked up humour, my daughter got diagnosed last year. So I fully know what horrors await my beautiful baby girl.

 

Life's a prick init?

[Lee909]

Fuck thats horrible.

[Fabio]

Fuck thats horrible.

The one positive is she's got a dad who knows what the script is

 

Fucking awful for me like, but gives her a good start like

[Bjornebye]

Sorry to hear that Fabio

[Fabio]

Yeah it's shite, but everyone has shite. Just mines a different form

 

 

Privilege though. As a white Englishman from a middle class upbringing, I don't believe in privilege, I believe in working hard

 

*Tongue firmly poking through cheek, call a fucking doctor*

[Dr Nowt]

Fuck, so sorry to hear that lads. Been living with CF for just shy of 41 years now, and it sure is one relentless, treacherous bastard. However, the age I just wrote tells me how lucky I am.

 

I’ve been friends with others who had it and barely made their teens, in the days before cross-infection was fully understood and you could mix with other patients, and my ex-girlfriend lost two cousins to it very young. I’ll never forget my parents’ faces when they at my insistence used to bring me to visit my mate Tony in hospital at 11 years old, and especially those of his parents’. Words were redundant on those occasions, in what was an unbearable situation for both sets of adults. Tony was the least concerned human in the room, an unfeasibly tough little lad made from something not of this world.

 

The brother of my exes’ cousins has not long had a daughter with CF, so similar to Fabio has been served a horribly cruel blow psychologically. I’ve talked to him about it since she was born (at his own request), trying to put over another perspective; as hard as it is to live with it’s not always a guaranteed death sentence, and sometimes people are luckier for reasons that defy rhyme or reason.

 

Especially with personalised medications like Orkambi in the pipeline. I’m sure you know already Fabio, but for people of your lass’s generation, should such drugs become widely available before major damage can be sustained, they have the potential to be transformative as compared to what is available currently. I’ve heard a senior doctor liken their potential effect as akin to insulin for diabetes, and of course such professionals have always been hugely reluctant to divulge such positive comments for obvious reasons. There seems to me to be a clear significance to the change in mood music on future treatments for CF, which makes the potential picture the best it has been in my lifetime, especially for the next generation.

 

I’ve been involved in drug trials for such medications and personally experienced stunning improvements in energy, quality of life, alertness, get up and go, ability to be active everyday, etc, even at my age and stage of the CF life cycle. Coming back off them when the trial is over and seeing those gains slide away is a merciless gig, but all part of the process to ensure one day it’s a significantly easier condition to live with for everyone. I now doubly hope they get cracked and licensed as soon as possible, so your daughter can benefit from them and get the life and unlimited future she deserves.

 

Also, as I feel you guys don’t hear it anywhere near enough, thanks for everything you and everyone else looking after patients with CF do for us. It seems to be a phenomenally demanding job, and cuts to the NHS have meant that for people like me, it’s the goodwill and professionalism of those working to keep us well in often thankless conditions which keeps me alive, sometimes to the detriment of their own well-being.

 

I nearly died in February. Was a freak yet perfect storm that saw me admitted 4 times in two months, and just threatened to sweep me away. You’re always one bad exacerbation from life changing forever with CF, which helps keep what really matters in sharp focus. Have since managed to turn it around at a level that has caused open surprise among my clinical team, and will hopefully be like it didn’t happen at all in another couple of months.

 

Anyway, one of the sisters had commented to me about my perspective on and attitude towards my illness during the depths of this process. As I was later preparing for discharge, a shattered middle-aged guy walked past me with a haunted look in his eyes, and for a split-second I thought he looked a bit out of place as a patient on the ward, before I realised the dynamic and remembered how my folks used to look.

 

As the sister said goodbye to him, and he faded up the corridor...very slowly, a good deal behind him, came a dreadfully frail teenage lad, oxygen backpack on, vacant, thousand mile stare. Barely even had a chance at life. My eyes filled with tears immediately, and after he’d turned the corner and gone, I said to the same sister, “That’s where my perspective comes from...I’m an immensely lucky man”.

 

I guess what I’m saying is that apart from those at the absolute extremes, all privilege is relative. In some ways I have possibly been a touch unlucky, but in most I know I have every reason to be nothing but eternally thankful. Most of us on here are in that boat, ultimately. The hand of cards you get dealt is obviously hugely significant, but though few of us have any say in which ones we get, most of us have at least some say in how we play them. And that’s how I always have and always will feel. We’ve all got our own crosses to bear, but I know personally that things could always be devastatingly worse. It’s a good life, well worth living.

[Rico1304]

Fuck, so sorry to hear that lads. Been living with CF for just shy of 41 years now, and it sure is one relentless, treacherous bastard. However, the age I just wrote tells me how lucky I am.

 

I’ve been friends with others who had it and barely made their teens, in the days before cross-infection was fully understood and you could mix with other patients, and my ex-girlfriend lost two cousins to it very young. I’ll never forget my parents’ faces when they at my insistence used to bring me to visit my mate Tony in hospital at 11 years old, and especially those of his parents’. Words were redundant on those occasions, in what was an unbearable situation for both sets of adults. Tony was the least concerned human in the room, an unfeasibly tough little lad made from something not of this world.

 

The brother of my exes’ cousins has not long had a daughter with CF, so similar to Fabio has been served a horribly cruel blow psychologically. I’ve talked to him about it since she was born (at his own request), trying to put over another perspective; as hard as it is to live with it’s not always a guaranteed death sentence, and sometimes people are luckier for reasons that defy rhyme or reason.

 

Especially with personalised medications like Orkambi in the pipeline. I’m sure you know already Fabio, but for people of your lass’s generation, should such drugs become widely available before major damage can be sustained, they have the potential to be transformative as compared to what is available currently. I’ve heard a senior doctor liken their potential effect as akin to insulin for diabetes, and of course such professionals have always been hugely reluctant to divulge such positive comments for obvious reasons. There seems to me to be a clear significance to the change in mood music on future treatments for CF, which makes the potential picture the best it has been in my lifetime, especially for the next generation.

 

I’ve been involved in drug trials for such medications and personally experienced stunning improvements in energy, quality of life, alertness, get up and go, ability to be active everyday, etc, even at my age and stage of the CF life cycle. Coming back off them when the trial is over and seeing those gains slide away is a merciless gig, but all part of the process to ensure one day it’s a significantly easier condition to live with for everyone. I now doubly hope they get cracked and licensed as soon as possible, so your daughter can benefit from them and get the life and unlimited future she deserves.

 

Also, as I feel you guys don’t hear it anywhere near enough, thanks for everything you and everyone else looking after patients with CF do for us. It seems to be a phenomenally demanding job, and cuts to the NHS have meant that for people like me, it’s the goodwill and professionalism of those working to keep us well in often thankless conditions which keeps me alive, sometimes to the detriment of their own well-being.

 

I nearly died in February. Was a freak yet perfect storm that saw me admitted 4 times in two months, and just threatened to sweep me away. You’re always one bad exacerbation from life changing forever with CF, which helps keep what really matters in sharp focus. Have since managed to turn it around at a level that has caused open surprise among my clinical team, and will hopefully be like it didn’t happen at all in another couple of months.

 

Anyway, one of the sisters had commented to me about my perspective on and attitude towards my illness during the depths of this process. As I was later preparing for discharge, a shattered middle-aged guy walked past me with a haunted look in his eyes, and for a split-second I thought he looked a bit out of place as a patient on the ward, before I realised the dynamic and remembered how my folks used to look.

 

As the sister said goodbye to him, and he faded up the corridor...very slowly, a good deal behind him, came a dreadfully frail teenage lad, oxygen backpack on, vacant, thousand mile stare. Barely even had a chance at life. My eyes filled with tears immediately, and after he’d turned the corner and gone, I said to the same sister, “That’s where my perspective comes from...I’m an immensely lucky man”.

 

I guess what I’m saying is that apart from those at the absolute extremes, all privilege is relative. In some ways I have possibly been a touch unlucky, but in most I know I have every reason to be nothing but eternally thankful. Most of us on here are in that boat, ultimately. The hand of cards you get dealt is obviously hugely significant, but though few of us have any say in which ones we get, most of us have at least some say in how we play them. And that’s how I always have and always will feel. We’ve all got our own crosses to bear, but I know personally that things could always be devastatingly worse. It’s a good life, well worth living.

Negged

[Strontium]

Reminds me of a documentary I saw with that Stelios guy , where he was saying that the EasyJet business was all his own sweat and toil & other than his dad giving him two planes to start with , nobody else was involved in his success.

That sounds like sarcasm to me. Stelios is a man who is fully aware of his privileged upbringing.

 

https://www.theguardian.com/business/2006/may/05/theairlineindustry.travelnews

 

Stelios's publicity stunts may endear him to journalists but so does his self-deprecation. Often asked for advice for budding entrepreneurs, he answers: "Have a wealthy father."

https://www.telegraph.co.uk/news/newstopics/nationaltreasures/2191986/Sir-Stelios-Haji-Ioannou-portrait.html

 

Stelios is famously modest about his wealthy roots, underplaying the hard work and business acumen needed to make the easyGroup a success. “I always respect self-made people more than rich boys like me,” he once claimed.

https://www.tutor2u.net/economics/blog/learning-lessons-from-sir-stelios-haji-ioannou

 

He started off by explaining how he got to where he is today. He was unabashed of his privilege: hard work and an enterprising mind are prerequisites, but it always helps to have a sugar daddy

[Dr Nowt]

Negged

Repped.

[Fabio]

 

 

Fuck, so sorry to hear that lads. Been living with CF for just shy of 41 years now, and it sure is one relentless, treacherous bastard. However, the age I just wrote tells me how lucky I am.

 

I’ve been friends with others who had it and barely made their teens, in the days before cross-infection was fully understood and you could mix with other patients, and my ex-girlfriend lost two cousins to it very young. I’ll never forget my parents’ faces when they at my insistence used to bring me to visit my mate Tony in hospital at 11 years old, and especially those of his parents’. Words were redundant on those occasions, in what was an unbearable situation for both sets of adults. Tony was the least concerned human in the room, an unfeasibly tough little lad made from something not of this world.

 

The brother of my exes’ cousins has not long had a daughter with CF, so similar to Fabio has been served a horribly cruel blow psychologically. I’ve talked to him about it since she was born (at his own request), trying to put over another perspective; as hard as it is to live with it’s not always a guaranteed death sentence, and sometimes people are luckier for reasons that defy rhyme or reason.

 

Especially with personalised medications like Orkambi in the pipeline. I’m sure you know already Fabio, but for people of your lass’s generation, should such drugs become widely available before major damage can be sustained, they have the potential to be transformative as compared to what is available currently. I’ve heard a senior doctor liken their potential effect as akin to insulin for diabetes, and of course such professionals have always been hugely reluctant to divulge such positive comments for obvious reasons. There seems to me to be a clear significance to the change in mood music on future treatments for CF, which makes the potential picture the best it has been in my lifetime, especially for the next generation.

 

I’ve been involved in drug trials for such medications and personally experienced stunning improvements in energy, quality of life, alertness, get up and go, ability to be active everyday, etc, even at my age and stage of the CF life cycle. Coming back off them when the trial is over and seeing those gains slide away is a merciless gig, but all part of the process to ensure one day it’s a significantly easier condition to live with for everyone. I now doubly hope they get cracked and licensed as soon as possible, so your daughter can benefit from them and get the life and unlimited future she deserves.

 

Also, as I feel you guys don’t hear it anywhere near enough, thanks for everything you and everyone else looking after patients with CF do for us. It seems to be a phenomenally demanding job, and cuts to the NHS have meant that for people like me, it’s the goodwill and professionalism of those working to keep us well in often thankless conditions which keeps me alive, sometimes to the detriment of their own well-being.

 

I nearly died in February. Was a freak yet perfect storm that saw me admitted 4 times in two months, and just threatened to sweep me away. You’re always one bad exacerbation from life changing forever with CF, which helps keep what really matters in sharp focus. Have since managed to turn it around at a level that has caused open surprise among my clinical team, and will hopefully be like it didn’t happen at all in another couple of months.

 

Anyway, one of the sisters had commented to me about my perspective on and attitude towards my illness during the depths of this process. As I was later preparing for discharge, a shattered middle-aged guy walked past me with a haunted look in his eyes, and for a split-second I thought he looked a bit out of place as a patient on the ward, before I realised the dynamic and remembered how my folks used to look.

 

As the sister said goodbye to him, and he faded up the corridor...very slowly, a good deal behind him, came a dreadfully frail teenage lad, oxygen backpack on, vacant, thousand mile stare. Barely even had a chance at life. My eyes filled with tears immediately, and after he’d turned the corner and gone, I said to the same sister, “That’s where my perspective comes from...I’m an immensely lucky man”.

 

I guess what I’m saying is that apart from those at the absolute extremes, all privilege is relative. In some ways I have possibly been a touch unlucky, but in most I know I have every reason to be nothing but eternally thankful. Most of us on here are in that boat, ultimately. The hand of cards you get dealt is obviously hugely significant, but though few of us have any say in which ones we get, most of us have at least some say in how we play them. And that’s how I always have and always will feel. We’ve all got our own crosses to bear, but I know personally that things could always be devastatingly worse. It’s a good life, well worth living.

Excellent viewpoint, and one I'm ridiculously grateful for.

 

I try to be as positive as I canz thinking about orkambi (that's the one for her gene type), thinking about early diagnosis, early physio, seen every couple of months... Everything that's possible to maintain health is well and truly underway

 

But as you say, it just takes one exacerbation to do years of work. That's where my dear comes in. Everyone's a bit precious with their babies, but I'm probably too far. Dear of taking her out if it's too cold/wet/high pollen/too sunny etc etc. Seen too many twentyish people take the knock from flu and the likes, that I'm perpetually on guard.

 

Still work on the cf ward too. Whole things not good for my sanity. But I keep thinking "I'd like someone who gives a shit like me to look after her in 17 years; so let's make sure I'm there to cheer up/talk to/laugh/cry with this current lot", so I can't bring myself to leave.

 

Words can't begin to describe my gratitude to you and your Ilk for doing the research. We're in the throes of one now where she's perpetually on an antibiotic (as that's what alder hey do as standard, and they're seeing if that's a good or bad thing). 3 years, and then we can decide if we want to continue with flucloxacillin BD, or try without. Already I'm leaning towards continuing for my own fear.

 

Also baby Creon is fucking irritating.

[Captain Turdseye]

That last page of the thread was a tough read. I really thought Spunkmouse would have renewed his membership by now.

[Bob]

Im so sorry about your brother. I work on a cystic fibrosis ward, and have done for 8 years, so I've seen the heartache and horror watching relatively fit 20 year olds, turn in to shadows of themselves within 2 years. Ive always maintained I wouldn't wish it on my enemy.

 

And as fate has a twisted sense of fucked up humour, my daughter got diagnosed last year. So I fully know what horrors await my beautiful baby girl.

 

Life's a prick init?

Sorry to hear that, pal. And your story too, bobby.

[Bob]

Content removed to save space only. What a bloody excellent post.

 

Thanks for sharing that. I don’t know anyone personally that suffers and know relatively little about the illness, and I found that touching to read, so I’m sure those that do will even more so.

 

Good luck to you all.

[VERBAL DIARRHEA]

Fuck me I'm upset now, came on here to read on from where I left off and tell you about my new pair of Balenziaga.

 

Some self-centred people on here.

[Fabio]

Fuck me I'm upset now, came on here to read on from where I left off and tell you about my new pair of Balenziaga.

 

Some self-centred people on here.

I decided that I wanted to take the thread somewhere else

 

As a new poster, I feel like it's completely my right to throw my weight around.

[VERBAL DIARRHEA]

Oh ok then, seen as you're new and all.

[Anny Road]

Honesty courage and fortitude as illustrated in this thread makes me feel like an ungrateful and highly privileged individual.

All the luck to you lads.

[Champ]

Been living with CF for just shy of 41 years...

Master of the understatement, you, Ben.

 

Just when I think I'm done with all you argumentative, pack hunting misogynists someone pulls a stunt like this. What an outstanding post.

 

I can feel a batch of cookies coming on x

[Oh Buoy]

Thought I found £1 in my wallet for lunch today. 

 

But it was 20CZK from a recent holiday - absolutely fucking gutted as I couldn't buy the sausage roll I wanted.

 

Even had to walk back to the office in pure shame that I had to use my Tesco Pay app.