I made it!! for those of you who don't follow me on twitter, it's taken me all day to negotiate the endless journey to out-patients so that I can blog on one of the public access computers.
I'm afraid I've rather taken a turn for the worse. It seems I was in denial and in fact, my crohn's has been playing up all along. Perhaps I got so used to saying "fine" when anyone asked, so used to not eating when it might cause embarrassing symptoms or unbearable pain that I didn't notice the Sickie-Jinx sneaking up on me again.
Well, he has now. I'm sitting here, in mis-matched pyjamas, in a public lobby with hair like a slightly radical brillo pad. I've got a feeding tube in my nose, and tomorrow I will be hooked up to a pain pump until I wait for surgery.
Yep, surgery. Because my obnoxious bowel has decided to get all blocked up again. This is what made the journey from bed to PC so arduous. I couldn't even sit up until about 2.30 this afternoon and I had to negotiate the endless coridors in small chunks. So why today? Why did I have to write today?
Yesterday morning, my world decided to implode. Or rather, the few remaining bits that worked.
I'd woken up that morning to find that the liquid feed, that should have been drip-dripping into me all night, had in fact, been drip dripping on the floor, forming a sticky, sugary, gloopy puddle around my laptop. The poor thing didn't stand a chance. It was death by drowning.
I do everything on my laptop in hospital - watch tv, DVDs, blog, Skype, tweet and listen to music. Faced with an endless hospital stay without it and no money to replace it, I was desolate. At almost the same moment, Dave rang. He had been on the way to visit me to snatch a few precious hours with my boys before they had to go home again. The car had broken down on the M11, spewing oil everywhere in what sounded like a fairly terminal tantrum.
With no money at all for repair bills, I faced the rest of my stay with no visitors at all. I wouldn't see my babies for weeks - it was unimaginable.
In misery, I splurged my disasters all over twitter, then set to making calls and searching websites to help Dave get the car sorted out.
They got here in the end, in time to spend a few hours with me.
When I checked twitter a bit later, the amazing @fionajnicholson and some other friends had set up a fund to buy me a new laptop and help with the petrol and repair costs to the car!!! By the time I found out about it there was over £500 in the account and this morning it had reached a thousand!!!
I'm amazed and humbled that so many people wanted to help me. Dave and I were in desperate straits, already borrowing money from family to afford the visists to Cambridge and unsure how on earth we were going to manage.
Last night, for the first time, I went to bed without worrying and this morning, my first thought was relief. That's worth all the money in the world. More than that though, it reminded me how amazing people can be, how kind and generous. In a world where everyone and everything seems corrupt and rotten, it was a beautiful thing
This won't be the most eloquent post I've ever written, my hands are shaky and I think my blood is about 80% opiates, but even if the rest makes no sense at all, I just wanted to say "Thank You" from the bottom of my heart.
Monday, 30 April 2012
Saturday, 21 April 2012
It's all in your Head
Every time I'm in hospital, I learn something.
Sometimes the lesson's been very, very hard to learn. To survive a long term illness, you have to be prepared to search your soul. You have to be brutally honest with yourself. You have to set goals every day and there are lines you must never cross.
However painful or uncomfortable, the lesson is what it is and you can't run from it. It follows you. Because no matter what happens, you can't wish the ill away. You can dump a selfish lover or sell a dingy flat. You can change your job or your friends but you can never wish the ill away.
I've seen great cruelties. There it is, it's a fact of life. There are many excellent nurses and dedicated doctors, but wherever there is vulnerability, there is cruelty.
But the greatest cruelty of them all is doubt.
In the 8 days I've been in hospital, I've met a woman with crohn's. Hard to believe, I know, but her crohn's is even worse than mine. She's had more operations, she gets more symptoms. But even now, after all those years, she still has to fight the doubt. The casually dismissive GP, the suspicious pain specialist, the nurse who thinks she knows best. And a little voice, still whispers in her quiet moments "It's all in your head."
There was the girl celebrating her 21st birthday, today, alone in an NHS bed. Her face was gaunt, her bowels had all but stopped working, her heart rate was all over the place, her joints frequently dislocated. But for the last two years she'd been told that these oh-so-physical of symptoms had to be "all in her head"
Then I met the lady in the wheelchair. Frequently admitted to intensive care, unable to breathe. Unable to walk, unable to eat, fed through a tube. But guess what? A consultant, somewhere way back in the mists of time had concluded she had "conversion disorder". You know what that means? Yup, you guessed it. It's "all in her head" Actually she just got a diagnosis, but that one doctor, all those years ago ensured that no-one would take her seriously for nearly a decade.
And then there's me. 6 years of vomiting, 6 years of pain, tears on the way to school, delirious through long nights of misery. But I was "just" anorexic or "just" depressed. I was surely bullied at school or my parents beat me? Either way it was "all in my head".
Do you know what that does to you? Do you know how much strength of character it takes to face 6 doctors, all stood around your bed and tell them you think they're wrong? To refuse a course of treatment you know is irrelevant? To do it for weeks, months, even years, until you find a saviour? A good doc after all the bad docs?
It doesn't stop with a diagnosis. Even with a label, you then have to justify your symptoms. If they don't fit neatly into the box the label came on, it must simply be "all in your head." You can spend all day telling a doctor you feel miserably nauseous, but if it isn't a symptom of your condition, he'll conclude it's "all in your head." You might be told that you "think about minor aches and pains too much" You can claim that a drug gives you a rash or a fever, but if it isn't a known side effect, the doctor will reassure you that it's "all in your head" Only when you find yourself with septicaemia will anyone begin to listen. If you get too much pain, you'll get a new label - "drug seeker" to go on your box. If later, they find a huge, weeping abscess to explain the pain, you won't quite be able to scrape the label off the box again.
Do doctors realise how dangerous this is? Do they understand that because of this constant doubt, we all wait until our head has actually fallen off before we can be dragged kicking and screaming to accident and emergency? Us sickies all know - there is only one thing worse than trying to get an out of hours doctor to see you and that's having to do it on a bank holiday.
We wait until we can't walk, talk or eat before we'll go near a hospital bed. We spend weeks longer than we should convincing ourselves we're really fine. In fact, convincing ourselves that it's "all in our heads"
You find yourself justifying things with friends that you don't need to explain. You doubt yourself - did you cry off your sister's birthday because you were heaving over the sink, or did you somehow make it happen because you didn't really want to go? Did you come into hospital for a nice rest and a few weeks away from the kids? Are you really just an attention seeking drama queen?
It never goes. Every new symptom brings a new set of challenges. Every test that comes back fine makes you wonder if this really is the time it's "all in your head"
Luckily I have an amazing consultant. Every time I'm in hospital, waiting for surgery, he brings a scrummage of student doctors to come and play Diagnosis or No Diagnosis. I have an atypical case of crohn's and it's not easy to diagnose from my symptoms.
A dozen or so pale and studious looking very-young-people (they didn't used to be so young....) troop into my cubicle and look nervous. Before they are allowed to ask me any questions, or examine me at all, my consultant picks on one poor unsuspecting soul and asks "Right, what can you tell me about this patient" He will invariably reach for my notes, but my consultant stops him.
The student squirms for a while (I can tell how much my consultant likes or dislikes them now by how long he makes them squirm for) and just as his discomfort starts to seep out onto the ward, my doctor does his party trick :
"Well, Sue has her own blanket, her own tea cup, her computer and a picture of her family. That tells you she's done this many times before. It tells you she knows she will be here for weeks not days. There are non-fiction books on her dresser, that tells you she's perfectly intelligent enough to explain her symptoms to you and she has no flowers or cards. That tells you she's been in for more than a week, because no-one thinks to send flowers after that and no-one sends cards to people who are always ill. You can be fairly sure that this patient will give you an informed, specific account of her illness and her current symptoms. If you listen to what she tell you, you've probably got 95% of your diagnosis."
After 30 or so hands all take a turn at tapping my chest or listening to my heart or palpating my bowel, he leaves them with a warning :
"Don't ever be one of those doctors. If you cannot find out what is wrong with a patient, you have failed, not the patient. Don't ever blame a patient if you can't find out what is wrong with them, blame yourself. Lazy doctors blame the patient. Good doctors listen to them.
And with that, he wafts off in a cloud of quiet importance.
Doubting your patients, judging them, labelling them, is dangerous. But most of all it's cruel. It leaves scars deeper than any surgeon. Yet I've met precisely four people to talk to so far this stay and it was ALL "all in their heads." Unlikely, isn't it.
Sometimes the lesson's been very, very hard to learn. To survive a long term illness, you have to be prepared to search your soul. You have to be brutally honest with yourself. You have to set goals every day and there are lines you must never cross.
However painful or uncomfortable, the lesson is what it is and you can't run from it. It follows you. Because no matter what happens, you can't wish the ill away. You can dump a selfish lover or sell a dingy flat. You can change your job or your friends but you can never wish the ill away.
I've seen great cruelties. There it is, it's a fact of life. There are many excellent nurses and dedicated doctors, but wherever there is vulnerability, there is cruelty.
But the greatest cruelty of them all is doubt.
In the 8 days I've been in hospital, I've met a woman with crohn's. Hard to believe, I know, but her crohn's is even worse than mine. She's had more operations, she gets more symptoms. But even now, after all those years, she still has to fight the doubt. The casually dismissive GP, the suspicious pain specialist, the nurse who thinks she knows best. And a little voice, still whispers in her quiet moments "It's all in your head."
There was the girl celebrating her 21st birthday, today, alone in an NHS bed. Her face was gaunt, her bowels had all but stopped working, her heart rate was all over the place, her joints frequently dislocated. But for the last two years she'd been told that these oh-so-physical of symptoms had to be "all in her head"
Then I met the lady in the wheelchair. Frequently admitted to intensive care, unable to breathe. Unable to walk, unable to eat, fed through a tube. But guess what? A consultant, somewhere way back in the mists of time had concluded she had "conversion disorder". You know what that means? Yup, you guessed it. It's "all in her head" Actually she just got a diagnosis, but that one doctor, all those years ago ensured that no-one would take her seriously for nearly a decade.
And then there's me. 6 years of vomiting, 6 years of pain, tears on the way to school, delirious through long nights of misery. But I was "just" anorexic or "just" depressed. I was surely bullied at school or my parents beat me? Either way it was "all in my head".
Do you know what that does to you? Do you know how much strength of character it takes to face 6 doctors, all stood around your bed and tell them you think they're wrong? To refuse a course of treatment you know is irrelevant? To do it for weeks, months, even years, until you find a saviour? A good doc after all the bad docs?
It doesn't stop with a diagnosis. Even with a label, you then have to justify your symptoms. If they don't fit neatly into the box the label came on, it must simply be "all in your head." You can spend all day telling a doctor you feel miserably nauseous, but if it isn't a symptom of your condition, he'll conclude it's "all in your head." You might be told that you "think about minor aches and pains too much" You can claim that a drug gives you a rash or a fever, but if it isn't a known side effect, the doctor will reassure you that it's "all in your head" Only when you find yourself with septicaemia will anyone begin to listen. If you get too much pain, you'll get a new label - "drug seeker" to go on your box. If later, they find a huge, weeping abscess to explain the pain, you won't quite be able to scrape the label off the box again.
Do doctors realise how dangerous this is? Do they understand that because of this constant doubt, we all wait until our head has actually fallen off before we can be dragged kicking and screaming to accident and emergency? Us sickies all know - there is only one thing worse than trying to get an out of hours doctor to see you and that's having to do it on a bank holiday.
We wait until we can't walk, talk or eat before we'll go near a hospital bed. We spend weeks longer than we should convincing ourselves we're really fine. In fact, convincing ourselves that it's "all in our heads"
You find yourself justifying things with friends that you don't need to explain. You doubt yourself - did you cry off your sister's birthday because you were heaving over the sink, or did you somehow make it happen because you didn't really want to go? Did you come into hospital for a nice rest and a few weeks away from the kids? Are you really just an attention seeking drama queen?
It never goes. Every new symptom brings a new set of challenges. Every test that comes back fine makes you wonder if this really is the time it's "all in your head"
Luckily I have an amazing consultant. Every time I'm in hospital, waiting for surgery, he brings a scrummage of student doctors to come and play Diagnosis or No Diagnosis. I have an atypical case of crohn's and it's not easy to diagnose from my symptoms.
A dozen or so pale and studious looking very-young-people (they didn't used to be so young....) troop into my cubicle and look nervous. Before they are allowed to ask me any questions, or examine me at all, my consultant picks on one poor unsuspecting soul and asks "Right, what can you tell me about this patient" He will invariably reach for my notes, but my consultant stops him.
The student squirms for a while (I can tell how much my consultant likes or dislikes them now by how long he makes them squirm for) and just as his discomfort starts to seep out onto the ward, my doctor does his party trick :
"Well, Sue has her own blanket, her own tea cup, her computer and a picture of her family. That tells you she's done this many times before. It tells you she knows she will be here for weeks not days. There are non-fiction books on her dresser, that tells you she's perfectly intelligent enough to explain her symptoms to you and she has no flowers or cards. That tells you she's been in for more than a week, because no-one thinks to send flowers after that and no-one sends cards to people who are always ill. You can be fairly sure that this patient will give you an informed, specific account of her illness and her current symptoms. If you listen to what she tell you, you've probably got 95% of your diagnosis."
After 30 or so hands all take a turn at tapping my chest or listening to my heart or palpating my bowel, he leaves them with a warning :
"Don't ever be one of those doctors. If you cannot find out what is wrong with a patient, you have failed, not the patient. Don't ever blame a patient if you can't find out what is wrong with them, blame yourself. Lazy doctors blame the patient. Good doctors listen to them.
And with that, he wafts off in a cloud of quiet importance.
Doubting your patients, judging them, labelling them, is dangerous. But most of all it's cruel. It leaves scars deeper than any surgeon. Yet I've met precisely four people to talk to so far this stay and it was ALL "all in their heads." Unlikely, isn't it.
Friday, 20 April 2012
One Ermine to Go, please!
Could there be anything more insulting to ordinary people, anything that would better confirm how totally out of touch our MPs are, than resignations over Lord's Reform??
As we, the voters, plead with MPs to save our NHS, protect sick and disabled people from the cruel attacks of the Welfare Reform Bill, beg Government not to increase tuition fees, privatise our schools or scrap legal aid, yet again, we see the only issue to stir their self-serving, venal, decadent egos is something that might affect them.
The public couldn't care less about Lord's reform. They absolutely could not give a fig.
MPs are, they say, concerned that an elected second chamber might start to "impose it's will on the commons." This translates into "Might stop us from doing exactly what we like, when we like."
According to the Telegraph
"A third MP warned of widespread rebellions in the Commons if the plans went ahead. He said: “If the Government presses ahead with this you will see rebellions off the scale with what we have seen so far.”
So the loss of ermine, the potential loss of a comfy place to rest one's slippers at the end of an arduous career in Westminster is the only issue that will drag them towards actually doing the job they were elected to do?
Never mind the disabled children losing half of the support they rely on, or cancer patients being sent to the jobcentre. Never mind poor children going hungry in our schools or homelessness rising dramatically. Forget a lack of affordable housing, rising crime or the sinister rise in suicides since austerity won the day. No thought for riots or gangs or forced prostitution? No flicker of concern over removing justice from some of our most vulnerable?
Nope. Not a LibDem or Conservative rebel in sight then, when we so desperately needed them, so desperately tried to engage with them.
It really is time our politicians took a good long look at themselves through our eyes. Their selfishness gets more breathtaking by the day.
As we, the voters, plead with MPs to save our NHS, protect sick and disabled people from the cruel attacks of the Welfare Reform Bill, beg Government not to increase tuition fees, privatise our schools or scrap legal aid, yet again, we see the only issue to stir their self-serving, venal, decadent egos is something that might affect them.
The public couldn't care less about Lord's reform. They absolutely could not give a fig.
MPs are, they say, concerned that an elected second chamber might start to "impose it's will on the commons." This translates into "Might stop us from doing exactly what we like, when we like."
According to the Telegraph
"A third MP warned of widespread rebellions in the Commons if the plans went ahead. He said: “If the Government presses ahead with this you will see rebellions off the scale with what we have seen so far.”
So the loss of ermine, the potential loss of a comfy place to rest one's slippers at the end of an arduous career in Westminster is the only issue that will drag them towards actually doing the job they were elected to do?
Never mind the disabled children losing half of the support they rely on, or cancer patients being sent to the jobcentre. Never mind poor children going hungry in our schools or homelessness rising dramatically. Forget a lack of affordable housing, rising crime or the sinister rise in suicides since austerity won the day. No thought for riots or gangs or forced prostitution? No flicker of concern over removing justice from some of our most vulnerable?
Nope. Not a LibDem or Conservative rebel in sight then, when we so desperately needed them, so desperately tried to engage with them.
It really is time our politicians took a good long look at themselves through our eyes. Their selfishness gets more breathtaking by the day.
Sunday, 15 April 2012
48 Hours and the World Changed
48 Hours. Just 48 Hours.
That's how long it takes to turn me into a frightened shell of Sue. How long it takes to take away all sense of who I am, of how the world usually works.
Through 28 years of Crohn's disease accompanied by just about every medical emergency you can think of it's not the symptoms that have hurt me most. Not the tubes, or hunger or endless nights retching in agony. Not the sudden haemorrhages or failed procedures. It's the people.
Nurses are not all angels. Some are cruel bullies. Some exist purely to leave you, writhing in pain when all the doctors have gone home. They leave you with a smile, or a shrug. We see it on the TV. We read reports, we witness the cruel abuse, exposed by a hidden documentary camera. But we don't like to believe it do we? What does it say about us - what does it say about human beings to accept that when we are at our weakest, our most vulnerable, when we literally have to hand our lives over to those charged with caring for us, they might let us down?
I know them, after all this time, from the clip of their footsteps, the way they speak at you but never wait to hear your answer. I know them the minute they come onto the ward. I sense the resulting chill in the atmosphere, the collapse in moral.
For two whole days things went well here on N2 in Addenbrookes hospital - flagship teaching hospital, beacon to the country.
We got a call at 5pm on Thursday night telling me they were going to admit me. They couldn't promise they could hold the bed til the next day, so Dave and I frantically arranged childcare, borrowed the petrol money to get here, dropped everything and drove the two or three hours up the motorway to Cambridge.
It all went well. The nurses and healthcare assistants were lovely. I'm in a private room and they got Dave a mattress so that he could sleep on the floor. My consultant ordered every test known to man in a bid to make me better before I actually die of malnutrition. The food was OK. People brought me cups of tea every hour or two and I have all 157 episodes of West Wing to watch - what more could I want?
Until last night.
My drug chart had been written up wrong by the doctor who admitted me. No big deal, I simply mentioned it to a nurse in the morning. It was for painkillers - the only painkillers I can take, but I'm not here because of pain, so I didn't agitate or fuss. Until some time around lunch yesterday.
They've got me drinking funny little cream shots for calories. They appear to be making my crohn's grumbly. I waited and waited for the chart to be changed, only for a Dr to say...... no. Not my doctor of course, noooo a doctor who doesn't know me at all and hadn't checked my notes!!
He said what now? He said I couldn't have the only painkiller I can take? One I have used responsibly for 29 years? One I take at home if I need it? He couldn't erm, write me up for my own prescription????
By 10 Oclock, I was writhing. Here I am, in a hospital in more pain, suffering more than I would at home. Finally a 12 year-old-netball-team-most-junior-of-junior-doctors came out and wrote me up for a one off dose in amongst many hints and outright suggestions of junkieness. We got past all that about 20 years ago. This, however, does not stop me from having the same old conversations, the same nights in agony while some jobsworth tells me it doesn't matter.
But that's not the worst bit. Noooooo. The worst bit is coming into my room after midnight and threatening Dave with security if he didn't leave!!!! Completely out of the blue!! After no hint at all that he shouldn't be there, after being told it was fine for him to stay (they bought him the bloody mattress to sleep on for God's sake!!) after 2 whole days of no-one batting an eyelid or even suggesting it might be a problem, they throw him out. At 12.30 am in the morning.
He had nowhere to go!! We live, as I've mentioned, three hours away. He'd had a beer with his dinner. He couldn't drive. We had no money for a hotel - I've already mentioned we had to borrow money for petrol just to get here - and I imagine, would not have been able to get one that late at night anyway.
They didn't even ask him to leave!
The first we knew was literally an aggressive Sister threatening him with security!! At midnight!!!
Being Dave, being calm and sensible, he simply got dressed, put his shoes on and went to sleep in the car outside. When he told the sister he would do that she told him "Go home now!! Why can't you go home now!! If you sleep in the car park, security will make you leave. Go home now!"
I just stood there in shock. I couldn't quite believe it.
Human beings would not act this way. Imagine being invited to stay with a friend only to be thrown out in the middle of the night. More terrifyingly, imagine if your friend seemed to see nothing at all unusual or out of the ordinary about ordering you to sleep in your car when you have no-where else to go?
These people are odd. Slightly un-hinged. This is not the way the world usually works, but once you become a patient, it doesn't matter. "They" can do what they like to you. "They" can leave you hungry, if they feel like it. "They" can refuse to get you a drink. "They" can watch you writhe in pain with a shrug or simply not come to answer your pleas at all.
No amount of eloquence or calm reason will help. There is literally nothing you can do to appeal to the better nature of these people. They don't have one.
My consultant has ordered every test known to man. They will take weeks to arrange and schedule. I have no realistic idea at all how I will make myself stay here. I cannot lose myself again. I can't spend weeks watching the PTSD flashbacks whirl through my mind. I can't voluntarily offer myself into the jaws of people who treat the weak and helpless with cruelty.
How? How do I make myself do it? The only answer anyone has ever managed is "You have to, to get better" Well, no. This makes me worse. So very, very much worse. Oh, I might survive. They might, in the end, find out what's wrong with me. But at what cost? You must all know me by now!! I'm not given to
unreasonable outbursts. And I HATE injustice. More than anything else in the world.
I cannot choose to be bullied, choose to stay in a place that frightens me beyond measure with people who act inhumanely.
That's how long it takes to turn me into a frightened shell of Sue. How long it takes to take away all sense of who I am, of how the world usually works.
Through 28 years of Crohn's disease accompanied by just about every medical emergency you can think of it's not the symptoms that have hurt me most. Not the tubes, or hunger or endless nights retching in agony. Not the sudden haemorrhages or failed procedures. It's the people.
Nurses are not all angels. Some are cruel bullies. Some exist purely to leave you, writhing in pain when all the doctors have gone home. They leave you with a smile, or a shrug. We see it on the TV. We read reports, we witness the cruel abuse, exposed by a hidden documentary camera. But we don't like to believe it do we? What does it say about us - what does it say about human beings to accept that when we are at our weakest, our most vulnerable, when we literally have to hand our lives over to those charged with caring for us, they might let us down?
I know them, after all this time, from the clip of their footsteps, the way they speak at you but never wait to hear your answer. I know them the minute they come onto the ward. I sense the resulting chill in the atmosphere, the collapse in moral.
For two whole days things went well here on N2 in Addenbrookes hospital - flagship teaching hospital, beacon to the country.
We got a call at 5pm on Thursday night telling me they were going to admit me. They couldn't promise they could hold the bed til the next day, so Dave and I frantically arranged childcare, borrowed the petrol money to get here, dropped everything and drove the two or three hours up the motorway to Cambridge.
It all went well. The nurses and healthcare assistants were lovely. I'm in a private room and they got Dave a mattress so that he could sleep on the floor. My consultant ordered every test known to man in a bid to make me better before I actually die of malnutrition. The food was OK. People brought me cups of tea every hour or two and I have all 157 episodes of West Wing to watch - what more could I want?
Until last night.
My drug chart had been written up wrong by the doctor who admitted me. No big deal, I simply mentioned it to a nurse in the morning. It was for painkillers - the only painkillers I can take, but I'm not here because of pain, so I didn't agitate or fuss. Until some time around lunch yesterday.
They've got me drinking funny little cream shots for calories. They appear to be making my crohn's grumbly. I waited and waited for the chart to be changed, only for a Dr to say...... no. Not my doctor of course, noooo a doctor who doesn't know me at all and hadn't checked my notes!!
He said what now? He said I couldn't have the only painkiller I can take? One I have used responsibly for 29 years? One I take at home if I need it? He couldn't erm, write me up for my own prescription????
By 10 Oclock, I was writhing. Here I am, in a hospital in more pain, suffering more than I would at home. Finally a 12 year-old-netball-team-most-junior-of-junior-doctors came out and wrote me up for a one off dose in amongst many hints and outright suggestions of junkieness. We got past all that about 20 years ago. This, however, does not stop me from having the same old conversations, the same nights in agony while some jobsworth tells me it doesn't matter.
But that's not the worst bit. Noooooo. The worst bit is coming into my room after midnight and threatening Dave with security if he didn't leave!!!! Completely out of the blue!! After no hint at all that he shouldn't be there, after being told it was fine for him to stay (they bought him the bloody mattress to sleep on for God's sake!!) after 2 whole days of no-one batting an eyelid or even suggesting it might be a problem, they throw him out. At 12.30 am in the morning.
He had nowhere to go!! We live, as I've mentioned, three hours away. He'd had a beer with his dinner. He couldn't drive. We had no money for a hotel - I've already mentioned we had to borrow money for petrol just to get here - and I imagine, would not have been able to get one that late at night anyway.
They didn't even ask him to leave!
The first we knew was literally an aggressive Sister threatening him with security!! At midnight!!!
Being Dave, being calm and sensible, he simply got dressed, put his shoes on and went to sleep in the car outside. When he told the sister he would do that she told him "Go home now!! Why can't you go home now!! If you sleep in the car park, security will make you leave. Go home now!"
I just stood there in shock. I couldn't quite believe it.
Human beings would not act this way. Imagine being invited to stay with a friend only to be thrown out in the middle of the night. More terrifyingly, imagine if your friend seemed to see nothing at all unusual or out of the ordinary about ordering you to sleep in your car when you have no-where else to go?
These people are odd. Slightly un-hinged. This is not the way the world usually works, but once you become a patient, it doesn't matter. "They" can do what they like to you. "They" can leave you hungry, if they feel like it. "They" can refuse to get you a drink. "They" can watch you writhe in pain with a shrug or simply not come to answer your pleas at all.
No amount of eloquence or calm reason will help. There is literally nothing you can do to appeal to the better nature of these people. They don't have one.
My consultant has ordered every test known to man. They will take weeks to arrange and schedule. I have no realistic idea at all how I will make myself stay here. I cannot lose myself again. I can't spend weeks watching the PTSD flashbacks whirl through my mind. I can't voluntarily offer myself into the jaws of people who treat the weak and helpless with cruelty.
How? How do I make myself do it? The only answer anyone has ever managed is "You have to, to get better" Well, no. This makes me worse. So very, very much worse. Oh, I might survive. They might, in the end, find out what's wrong with me. But at what cost? You must all know me by now!! I'm not given to
unreasonable outbursts. And I HATE injustice. More than anything else in the world.
I cannot choose to be bullied, choose to stay in a place that frightens me beyond measure with people who act inhumanely.
Friday, 13 April 2012
The Road to Hospital - Part 1
Where do I begin?
You might all remember I was admitted to my local hospital just days after we released the Responsible Reform (Spartacus) Report
I'd been unwell for months, hacking and spluttering my way through one chest infection after another, but by the end of last year it was obvious that, in fact, I was "Unwell".
"Unwell" is the point where I realise I'm not just unwell. You probably have to have had a chronic illness for a decade or two to know what I mean, but it's that moment of creeping realisation, that flutter of recognition flashing through your mind like scenes from a film : Compass conference, June = Unwell. Singing my welfare song, July = Unwell.Camping with the boys last August = Unwell. Oldest son's 7th birthday (October) = Horribly Unwell. Working on Spartacus Report = Unwell, Unwell and Very Much Worse.
I realised I'd been living on paracetamol for low grade fevers for most of the year. I realised that I'd had a cough that had never really gone away. I realised I was losing weight, always complaining of exhaustion. I wasn't walking far, struggled to get the kids to school or get around a supermarket. Even by my usual standards things were Not Right.
By the time I went into the local hospital, I could barely get out of bed, my face was swollen, I was coughing so much it was choking me and I'd lost more weight.
Because of the strong, chemo-style immune-suppressants I take, this not a good thing. As I recently explained Humira (or Adalimumab) increases the risk of severe infections and most commonly, TB. It is not just a "Oooh, be careful if you take this drug your head will fall off" standard warning - it's in bold type on the front screen of the website;
"Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB."
It goes on to say;
" In HIV and other immunosuppressed persons, any abnormality may indicate TB or the chest X-ray may even appear entirely normal.[1]"
I never really blogged about my stay in the local hospital (Worthing). It was so odd, so traumatic and surreal, I wasn't quite sure what to say. Dangerously, they made me doubt myself.
It all went fine in A&E. The doctor who admitted me immediately knew why a nasty fever and persistent cough in someone like me needed to be treated with caution. He admitted me to the Acute Medical Unit ( the clue is in the name!)
A House Officer came to see me that night. He'd just finished his gastro roatation and was newly on the respiratory team! Perfecto. He did all the right things. He explained how because of the Humira, they would need to test me for "things we wouldn't normally test a 38 year old for". He put up a broad spectrum IV anti-biotic and took blood cultures and ordered a sputum test. So far so excellent. I have no idea who he was but I'm confident he'll make an excellent Doctor.
The following morning, a female consultant marched into my room with the House Officer and the usual team of heavily cowed minions.
She barely spoke to me (never a good sign that, when they talk above you rather than to you.) and the first thing she did was shout at the House Officer "You'd better start realising this is NOT gastro". With that she started scrubbing lines through my prescription chart and tutting.
She listened to my chest and said that it was clear. She said my X-Ray was clear. She said I just had "a virus" and I could go home (?!?) I hawked up my best throat rattle for her, but she said I "probably had a touch of asthma". I started to say I'd never had asthma, no-one in my family had ever had asthma and that
my symptoms had been going on for 8 months, but she swooshed out of my room majestically in a puff of
disdain. I heard them discussing my X-Ray in the corridor "Well, the bronchia are a bit thickened but that doesn't mean anything"
I was shocked and upset - what had changed in 12 hours? I must have cried a bit, because the nurse asked me what was wrong and said she would call the doctor back.
Dr Arrogance never returned however, and an energetic, kind South African doctor appeared to be "assigned" to me. Nonetheless, Dr Arrogance had made her mind up. With none of my copious notes, (which reside at Addenbrookes in Cambridge where I have all my bowel treatment) no idea of the history to my symptoms, without even weighing me. We were done, thanks awfully.
I was 6 Stone 9 by this stage. Both of my children were at home with raging temperatures, but they wanted to discharge me! I was mystified. Every time I tried to get out of bed, a nurse had to catch me, but Dr Arrogance still insisted I was fine.
Dr South-Africa did his best. He ordered a load more blood tests, but kept telling me how great my bloods looked. I explained over and over that they always do (even when my bowel was one huge festering infection my bloods barely roused themselves to notice) but he became more and more frustrated, his hands tied.
In the end, at 9pm that night, as I very calmly tried to run through the reasons I didn't think I was fine, he exploded. He screamed at me - yep screamed - for twenty minutes, an incoherent attack. It was so bad and so loud a nurse came into my room and looked at me as if to say "WTF?" but he ranted on regardless.
Crying and scared, I stopped answering him in the end - it was just making him worse - and stared at the bedspread.
Finally, he stormed out, but I was so exhausted, so poorly, I barely knew my own name. Half an hour or so later, he came back. His attitude had totally changed. He'd printed out the drug leaflet for Humira and seemed to have realised I wasn't just being a silly little girly. I pointed out, very reasonably, that in the 17 years I'd lived in Worthing, I'd never once come to his hospital and said "I know something is wrong". With my 28 years of crohn's experience, did that not tell him something?
*Sigh* I could go on, but I might as well cut a long story short. Dr Arrogance had made her mind up, Dr South Africa turned out to be frustrated but his heart was in the right place. There was a split - he and my nurse clearly didn't think I should go home, but the decision wasn't their's to take. They washed their hands of me.
**This is a long story, so more tomorrow
You might all remember I was admitted to my local hospital just days after we released the Responsible Reform (Spartacus) Report
I'd been unwell for months, hacking and spluttering my way through one chest infection after another, but by the end of last year it was obvious that, in fact, I was "Unwell".
"Unwell" is the point where I realise I'm not just unwell. You probably have to have had a chronic illness for a decade or two to know what I mean, but it's that moment of creeping realisation, that flutter of recognition flashing through your mind like scenes from a film : Compass conference, June = Unwell. Singing my welfare song, July = Unwell.Camping with the boys last August = Unwell. Oldest son's 7th birthday (October) = Horribly Unwell. Working on Spartacus Report = Unwell, Unwell and Very Much Worse.
I realised I'd been living on paracetamol for low grade fevers for most of the year. I realised that I'd had a cough that had never really gone away. I realised I was losing weight, always complaining of exhaustion. I wasn't walking far, struggled to get the kids to school or get around a supermarket. Even by my usual standards things were Not Right.
By the time I went into the local hospital, I could barely get out of bed, my face was swollen, I was coughing so much it was choking me and I'd lost more weight.
Because of the strong, chemo-style immune-suppressants I take, this not a good thing. As I recently explained Humira (or Adalimumab) increases the risk of severe infections and most commonly, TB. It is not just a "Oooh, be careful if you take this drug your head will fall off" standard warning - it's in bold type on the front screen of the website;
"Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB."
It goes on to say;
" In HIV and other immunosuppressed persons, any abnormality may indicate TB or the chest X-ray may even appear entirely normal.[1]"
I never really blogged about my stay in the local hospital (Worthing). It was so odd, so traumatic and surreal, I wasn't quite sure what to say. Dangerously, they made me doubt myself.
It all went fine in A&E. The doctor who admitted me immediately knew why a nasty fever and persistent cough in someone like me needed to be treated with caution. He admitted me to the Acute Medical Unit ( the clue is in the name!)
A House Officer came to see me that night. He'd just finished his gastro roatation and was newly on the respiratory team! Perfecto. He did all the right things. He explained how because of the Humira, they would need to test me for "things we wouldn't normally test a 38 year old for". He put up a broad spectrum IV anti-biotic and took blood cultures and ordered a sputum test. So far so excellent. I have no idea who he was but I'm confident he'll make an excellent Doctor.
The following morning, a female consultant marched into my room with the House Officer and the usual team of heavily cowed minions.
She barely spoke to me (never a good sign that, when they talk above you rather than to you.) and the first thing she did was shout at the House Officer "You'd better start realising this is NOT gastro". With that she started scrubbing lines through my prescription chart and tutting.
She listened to my chest and said that it was clear. She said my X-Ray was clear. She said I just had "a virus" and I could go home (?!?) I hawked up my best throat rattle for her, but she said I "probably had a touch of asthma". I started to say I'd never had asthma, no-one in my family had ever had asthma and that
my symptoms had been going on for 8 months, but she swooshed out of my room majestically in a puff of
disdain. I heard them discussing my X-Ray in the corridor "Well, the bronchia are a bit thickened but that doesn't mean anything"
I was shocked and upset - what had changed in 12 hours? I must have cried a bit, because the nurse asked me what was wrong and said she would call the doctor back.
Dr Arrogance never returned however, and an energetic, kind South African doctor appeared to be "assigned" to me. Nonetheless, Dr Arrogance had made her mind up. With none of my copious notes, (which reside at Addenbrookes in Cambridge where I have all my bowel treatment) no idea of the history to my symptoms, without even weighing me. We were done, thanks awfully.
I was 6 Stone 9 by this stage. Both of my children were at home with raging temperatures, but they wanted to discharge me! I was mystified. Every time I tried to get out of bed, a nurse had to catch me, but Dr Arrogance still insisted I was fine.
Dr South-Africa did his best. He ordered a load more blood tests, but kept telling me how great my bloods looked. I explained over and over that they always do (even when my bowel was one huge festering infection my bloods barely roused themselves to notice) but he became more and more frustrated, his hands tied.
In the end, at 9pm that night, as I very calmly tried to run through the reasons I didn't think I was fine, he exploded. He screamed at me - yep screamed - for twenty minutes, an incoherent attack. It was so bad and so loud a nurse came into my room and looked at me as if to say "WTF?" but he ranted on regardless.
Crying and scared, I stopped answering him in the end - it was just making him worse - and stared at the bedspread.
Finally, he stormed out, but I was so exhausted, so poorly, I barely knew my own name. Half an hour or so later, he came back. His attitude had totally changed. He'd printed out the drug leaflet for Humira and seemed to have realised I wasn't just being a silly little girly. I pointed out, very reasonably, that in the 17 years I'd lived in Worthing, I'd never once come to his hospital and said "I know something is wrong". With my 28 years of crohn's experience, did that not tell him something?
*Sigh* I could go on, but I might as well cut a long story short. Dr Arrogance had made her mind up, Dr South Africa turned out to be frustrated but his heart was in the right place. There was a split - he and my nurse clearly didn't think I should go home, but the decision wasn't their's to take. They washed their hands of me.
**This is a long story, so more tomorrow
Tuesday, 10 April 2012
Opinions please?
One other short but very important post :
The excellent DPAC (Disabled People Against Cuts) Are planning a mass day of protest on 18th April.
Disabled people, their friends, supporters and carers will be meeting at 1.30pm in Leicester Square. If you think you can possibly make it along, every last person will help.
A few days ago, DPAC were appealing for funds to help cover the costs of transport to help people get to the protest.
We have £956 left in the Spartacus Report fund and I wanted to ask you all if you think it would be a good idea to make a donation and if so how much you all think we should give.
It's your money, given with trust and generosity. We agreed that we would keep the money for fighting the £9.2 Billion of cuts disabled people are facing. If you think this is a good cause, do please leave a comment but equally, if you don't like the idea, feel free to say that too.
The excellent DPAC (Disabled People Against Cuts) Are planning a mass day of protest on 18th April.
Disabled people, their friends, supporters and carers will be meeting at 1.30pm in Leicester Square. If you think you can possibly make it along, every last person will help.
A few days ago, DPAC were appealing for funds to help cover the costs of transport to help people get to the protest.
We have £956 left in the Spartacus Report fund and I wanted to ask you all if you think it would be a good idea to make a donation and if so how much you all think we should give.
It's your money, given with trust and generosity. We agreed that we would keep the money for fighting the £9.2 Billion of cuts disabled people are facing. If you think this is a good cause, do please leave a comment but equally, if you don't like the idea, feel free to say that too.
PIP survey - Please help?
The wonderful Sam Barnett-Cormack and wearespartacus.org have designed this survey to help them put together an official Spartacus response to the PIP consultation.
We'd be REALLY grateful if you could spare a few minutes to take part. The more people that reply, the more reliable the results will be.
We don't feel that we should speak for you - but would love to base our response on what YOU think and need.
Thank you so much.
SURVEY
We'd be REALLY grateful if you could spare a few minutes to take part. The more people that reply, the more reliable the results will be.
We don't feel that we should speak for you - but would love to base our response on what YOU think and need.
Thank you so much.
SURVEY
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