Wednesday, 25 May 2011

The "We're Fine" Update

And from the whole of the Broken of Britain team I can say we are. Fine I mean. Ok so one of us has just got out of hospital from yet another infection, one of us has a 'wonky' heart, one of us has just moved and is suffering the increased health consequences, one of us has been diagnosed with dehydration, malnutrition and exhaustion, and another has a chest infection. But we're spoonies so we're all fine. 

To us 'fine' can mean not knowing what day it is, what our own names are or where we are. It means the people who love us standing over us with fear and worry etched on their faces, begging us to slow down, to see a doctor. It means those who care saying with broken resignation in their voices " but it shouldn't be like this, this is Britain". It means sitting back and watching us deteriorate until we have no strength left to argue otherwise, overruling and sending for the doctor. But still we'll tell you that we're fine if you ask.We'll probably even claim we're fit for work when we're like this, to us it's just a natural consequence of the risks we all knew we were taking with our health by campaigning but felt we have no other option but to continue anyway. 

To help you understand our 'fine' it might help to explain that not all of the 5 of us will live to see the end of this fight. Our conditions vary, but we are united in our shared understanding that this battle is bigger than each of us, more important than our individual lives, that it is literally a war we will wage with our dying breaths to protect those who we know will come after us, those we wish a better future for.

But it is a war with huge, terrible costs associated. Not bullets and bombs but no less lethal all the same. We step back and regroup because we have no choice, our bodies are weakened by the ferocity of attack against us. When ordered to rest we fret and worry about those with no-one to care for them, to fight for them and through our delirium insist on trying before falling back in a grudging, tactical retreat. 

The energy to fight will always be found - it's taken 3 days to write this much. To try to explain to you that this is the reality of 'fit for work'; that no matter what we do, what efforts we go to, we fight this because it is wrong. It is wrong to traumatise sick, disabled and dying people already living difficult enough lives for being unable to manage their bodies or minds well enough to sustain work.

But please don't believe that we are 'fit for work' or even that it's true when we insist to you

"we're fine"


Sue said...

To know that some people are fighting for those of us who can't, especially knowing what it costs you all, means more than I can say.

It means there is at least some degree of hope & I salute you all.

Thank you

Anonymous said...

crayzee always say fine when people ask how i am its a way of deflecting how we really feel. maybe we just sick of explaining every time yada yada yada

fourbanks said...

[QUOTE]To know that some people are fighting for those of us who can't, especially knowing what it costs you all, means more than I can say.

It means there is at least some degree of hope & I salute you all.

Thank you[/QUOTE]#
I think you speak for us all sue

MRadclyffe said...

Fine stands for 'f***ing incapable (of) normal engagements' in my book...

Invariably, people ask how because they feel they ought to ask because they know I'm sick, but they're not really interested in knowing the truth. Saying "Fine" gets us both out of a hole.

MRadclyffe said...

P.S. I echo the sentiments of others here: I think you're doing an incredible job on behalf of the millions who can't, don't or won't speak out, and it's worrying to know that it's affecting your health. Living this life is stressful enough without having to fight for the right to live it. I support your every move, and hope you all aren't too adversely affected in the long run.

Anonymous said...

(I am not questioning anything but really am open question that perhaps you can answer..

Why do what you do?

Why keep fighting?

Why when its so much of a personal cost to you...


Douglas said...

My pain and mental state have both deteriorated greatly over the past few weeks (it happens, I expect to be feeling slightly better soon), so I haven't been very active online or anything as I have been saying things that I normally wouldn't.

But I just want to thank you again, for everything you are doing. If there was any justice in this world, it would be the sick and disabled with big hearts who would inherit the earth and not these slimy bankers and politicians who care only for themselves and their money.

MRadclyffe said...

@Anonymous, who asked "Why?"

Because someone has to.

Because it is necessary.

Because they are willing to.

Because otherwise, who will? You? Your friends and family? Your GP? Your MP? (You = generic, it could mean anyone.)

Because someone asks "Why keep fighting?"

Rhydian said...

MRadclyffe: Thanks. Having logged on here for the first time in a week, you've cheered me up no end.

I do what I do - and this goes for everyone at The Broken of Britain - because if we don't nobody else will.

suecv said...

My son was left severely disabled after an untterly random attack left him with a 10" screwdriver track through his brain. He has known the best of NHS care, and suffered its worst nightmares too. As a carer and as a witness to what can be achieved through gritted teeth and being 'fine', I salute you, and those like you.

I, his mother, have seen absolute courage and absolute despair first hand. 'Fine' is an all encompassing shield. It means pretty much the same as 'stable' in ICU.

( 'You' hereafter is used generically and aimed at no-one in particular.)

'Fine' means the same for carers too. Not the ones who work as carers for a living, though there are many wonderful and caring people doing so. But to the huge workforce of unpaid and invisible carers who care for friends, family and neighbours. Who care, without pay, often without benefits, accepting inevitable poverty as part of their lives.

'Fine' means you can pretend that we do not have to fight against the system every step of the way. It means you can forget the poverty and the daily financial stress of just making ends meet. 'Fine' means ignore the fact that the vast majority of us have no time for a life of our own, that our social networks collapse when we become carers, that the internet which is difficult to afford, is often the only way we can communicate with other people.

'Fine' means we are as used as our carees to being treated like second class citizens and being overlooked by the system. We, too, are used to reading about the legislation to 'protect' us, and laughing hysterically when comparing it to reality.

'Fine' means that you can ignore our health needs, mental and physical. Ignore our age and creaking joints, or our youth and lack of childhood. You can ignore our exhaustion.

'Fine' is the smile with which we greet every day, even if we have to paint it on, to hide the fears and worries, the isolation, the terror of what happens when we are gone (as many of us have our own desperate care needs that are also ignored, and have little time left).

'Fine' means pretty much the same for the broken and for their carers, who are also broken, often unnecessarily, from the inside out.

'Fine' is aptly illustrated by my own tiny 'event' on Facebook. I asked people to spare a thought for carers, just for a day. Just a tiny moment of time to think about a carer one knows, maybe pick up the phone or write an email... just to remind them that carers are people too.!/event.php?eid=154656641267924

The 123 'attending' are mostly carers, carees, or friends of carers. They have propagated this 'event' through their friends lists.. at this moment, 19 'maybe' attending, 41 chose 'not attending' and a wonderful 695 have not replied. Of those, I know some are genuinely unable to do so for various reasons. Many simply can't even be bothered to click a button.

So what IS the final definition of 'I'm fine,'? Basically, whatever the listener chooses. It can be the precursor to a true conversation from heart to heart, or a simple way to allow the listener to walk away. It can mean, 'I don't have enough time left to tell you,' or it can be the gritted teeth of determination and quiet courage. It can mean, 'If I tell you, I would break in pieces'. It can mean, 'I'm dying'.

What is the correct response? Only your own conscience can answer that.

Myrrien said...

My six year old son's standard phrase at the moment is "right fine".

I'm sitting here at the moment trying not to move as it hurts so so much.

You are heros folks, never give in please. If wishes came true I would wish for you health but I wish even more for a continued voice.

As for why? Because we must never give in - this travesty must not continue unchallenged or unfought.

None of that makes sense probably I am too sore and feel really sick with the pain but be well folks, we are "right fine."