Editorial Note: In her comment, reproduced below, Sally was the person who best got to grips with what I was struggling with in last week’s post and this week’s and for the next few weeks. Drug induced injury is one sphere in which we get injured. Turning to other spheres may give us some ideas about how to handle the dilemma of a treatment induced injury – how to avoid being singled out the system, how to build a community that can resist and seek redress.
The Silver Lining Clouds the View outlined how working with mercury can cause a distinct psychosis or tremor or confusion that clears when the person leaves work.
But what about when a worker gets an illness like tuberculosis? This is not a specific industrial injury.
For fifty years around 1900, North Wales had the biggest slate quarries in the world. At a time when deaths from tuberculosis were falling in Britain, these quarries had increasing rates of tuberculosis and deaths. Repeated enquiries reviewed all options. Quarrying gave the workers silicosis. Did silicosis make tuberculosis more likely?
Local doctors said no. The problem was down to poor diet. The modern housewife spent too much time at school and her only domestic skill was the ability to use a tin opener. These medical views passed muster as the considered judgments of scientifically trained men.
Silicosis does predispose to TB. But, just as the mirror workers in Furth fifty years earlier took their chances with mercury, so too the quarrymen kept quiet about their chest problems. They steered clear of doctors. There was no other employment in the area if they were signed off. Both workers and employers knew that jobs in the mines were dying out.
You don’t have to silver a mirror or go down a mine to appreciate the psychology and politics at play here. You just have to take a medicine. Drugs come with risks. Even when things go wrong on treatment, short of being invalided, most people opt to cope with it, often silently, rather than own up. Owning up, especially if there is no treatment, makes you a loser, and the herd leaves losers behind. The injured worker or patient is like a dog barking at the passing caravan.
Sometimes truth is not something you dig for.
The link between treatment and injury may be a social one. The entire community may know what is going on. But the doctor will see a picture where it is not proven what causes what, and one of his options is to take your moral failings into account. This is often the most convenient option – for him, especially if you’re a woman.
This is a delicate world, a world in which there are no accidents if by accident we mean random events. An unexpected or unintended event is not an accident – although we use the word that way when we are knocked down by a car, and lawyers advertise their expertise in accidents. But Road Traffic Accidents, no less than Drug Traffic Accidents are rarely Acts of God.
An Act of God is when a cow jumps over a ditch and onto your car. In Road Traffic Accidents or Drug Traffic Accidents, someone has always been careless. It may be like the carelessness that started with the American Civil War when rifles that could hit a target at long range replaced muskets that couldn’t and all of a sudden troops could be picked off by a sniper. Being picked off by a sniper sounds almost random, but after the first time it happens, the military top brass are responsible for your death if, having seen what can happen, they do nothing to prevent it happening again.
If the event is not random, the question of responsibility comes into play. Before 1800 roughly we used to be able to attribute misfortune to God or Fate. It is now down to us. If I didn’t intend to hurt you, I am unlikely to concede that something I did in fact did hurt you. The bystanders, those with a superficial knowledge, will side with the likely winner rather than the likely loser, unless forced to delve deeper. Everybody takes steps to avoid being the person responsible, or on the side of the person responsible.
In nurseries for 4 year olds now if a mother brings in a cake on her son’s birthday, the staff will not let other children have a piece because they cannot validate her cake-making. A piece of cake will be put in a take home bag for the children, whose parents can let them have it, if the parents take responsibility.
For the loser in games like this, beyond the injury an identity is destroyed, as surely as if acid has been thrown in a face. I am now marked as a loser and the only people who can understand that are those marked in the same way. But no-one, not even a loser, likes the company of losers. The loser in the lottery of life will also likely lose any contest about what has happened her.
In the world of treatment induced injuries, God fails as an explanation. The modern replacement for God, Science, also fails. We are Shipwrecked and on our own.Share this:
Copyright © Data Based Medicine Americas Ltd.
From Sally MacGregor:
The idea that workers could and should be protected against industrial accidents and disease is presumably founded on retaining an efficient system, which is thus more economically productive. Workers had a long established right to compensation for injury caused by careless employers through the courts – but who could afford to hire a lawyer until the trades unions provided legal representation? Health and Safety legislation was very, very slow in arriving in the UK – not till the 1970s during an expansionist period of protecting and extending the rights of citizens: along with the Equal Pay Act 1970, the Sex Discrimination Act 1975, the Unfair Contract Terms Act and the Consumer Credit Act and the Sale of Goods Act in 1979. All these new Acts curbed the hitherto absolute sanctity of the freedom to trade, unfettered by the state.
But – all those pieces of liberal/humanitarian law were grumbled about before they were passed and have been widely regarded by big and small business ever since as a fetter on the freedom to make goods, sell them and create profits. The trading community has long maintained that any interference by the state in what they pay their workers, and the conditions in which they work causes business to collapse like a pack of cards. The ‘red tape’ trope – widely and incorrectly believed here in the UK to have been imposed by the EU – has, apparently, strangled expansion and innovation at birth. Fact is, really small businesses have always been exempt from much H&S regulation but it’s a dearly held belief. They suffer much more from high local taxation on their premises.
I’m not sure where you are going with this series David and even less idea what I’m saying here – except that the freedom to trade has always trumped the safety of workers – except and unless workers’ safety and wellbeing is in the economic interest of the state. So, to extend the theory to medicine, only if one can make a convincing argument for the economic benefits of less medication rather than more – are things likely to change.
Possibly there’s a link to the 21st century’s obsession with preventative medicine? As I understand it, the economic argument for widespread and costly screening for diseases or conditions which people didn’t know they had (and which might have caused them no bother anyway) was premised on saving money in the long run. Economics, not altruism. Start treating diabetes, or raised blood pressure early – and the burden on the NHS will be less in 10 or 20 years time. Frankly, although it’s an attractively easy equation to understand, I have yet to see any evidence whatsoever of money saved by the vast screening programs with which anyone over 50 is badgered and bullied into complying with. No figures. No evidence. No actual sums of money.
No figures either for dollars handed to Big Pharma by the desperately financially stretched NHS for the drugs used to lower blood pressure, cholesterol, blood sugar and so on – when a ‘pre-disease’ is identified.
In animal health – the much sought-after golden eggs were in finding drugs for heart or liver conditions in ‘companion animals’ – dogs, cats and rabbits, which (arguably) required lifelong medication. That traded on the deep affection people have for their pets. No insurance company was likely to fork out a hefty monthly sum for chronic conditions, so the cost falls on pet owners. And the basic, very simple equation used for the cost of the drug to them was – as much as they would pay.
There are several modern day injuries which can possibly be caused by current technologies, but the official line on them is that the systems/ items are safe. There is, I feel, always a background of ‘if we admit there is a problem, we shall alarm the public, sales will cease, court actions will follow’. A couple of examples: our older son used to have to drive from the Midlands each day to Heathrow. His girlfriend, later to be his wife, chatted with him on his mobile phone for a great deal of the journey, there and back. His phone sat in the same place in his trouser pocket everyday, and he spoke on a remote. After many months of this, he presented with a problem to his GP. He was diagnosed with testicular cancer, which had spread. The mobile phone had rested exactly where the cancer appeared. Prior to this, he had worked in a petrol station where he regularly oversaw tanker deliveries of fuel. The older owner had sadly died of a brain tumour. Also, prior to the driving job, our son had worked in a vehicle paint spray shop, despite having had childhood asthma. Now, how do we pinpoint which of these ‘hazards’ precipitated the cancer? The GP he saw when having the final problem said, somewhat alarmingly, ‘you are the 4th young man I have seen this month with the same problem’. Meantime we are reassured by the powers that be that mobile phones are safe. And indeed they are a part of most people’s lives, young and old. In years to come, will we look back and think, how could we have let this happen, when maybe brain and other cancers mushroom, especially thinking of the young developing brains. Dr Roger Coghill’s book ‘Electropolution’ was spelling it out for us back in 1992, but the Nat. Radiological Protection Board were in complete denial, and I expect they still are. How would the public live and work without their mobiles now? How would they react if shown how dangerous some of us think it is to live in close proximity to overhead electricity power lines carrying oscillating current, to which our brains have to adjust their own electrical rythmns thus taking a toll on the energy of our immune systems? To raise these issues is highly unpopular. We therefore each need to be well informed and try to limit the dangers to ourselves and our families. (We never use a mobile, except in emergencies, and moved away from a farm where our ram died from cancer in his field even nearer to the power lines than we were sleeping in the house). But many people, due to their work, do not have these choices. Also they are reassured that there isn’t really much of a problem ‘or it wouldn’t be allowed to happen, the Government would protect us’. But maybe we are sleepwalking into unimaginable consequences, and do we only have ourselves to blame? Or not…..
When we pause and take on board all that has been said above, it makes one wonder if this ‘modern’ life of ours is the blessing that it’s meant to be.
In days gone by, life was, undoubtedly, physically more demanding – for the workers as well as for housewives. Today, we have all the gadgets that we can imagine at our disposal, yet, in many ways, we are less physically fit than ever before.
Mentally, we suffer today, in greater numbers than ever before – despite the ‘modern’ approaches to treatment.
What can we make of this? Has mankind, somehow, changed along with all the other changes? Were our real needs over the centuries not sustained by the easier physical lives that we have? Nor by the range of medications now available to us?
When we look through our History books, we read of many ‘hardships’ that were met and overcome by many – but which, in turn, meant the death of many others.
It is a poor reflection on the ‘modern man’ (and woman – she’s just as guilty too!), that the emotions that we feel when looking back are just as true of today. Different problems they may be but they are attacking our present generation with the same ferocity as those from long ago.
What of the next generation? Will things change yet again, and, if so, will those changes be for the better – or will it simply be a case of replacing the old problems with new, equally challenging ones?
Through all of this, maybe we need to take heart – that faith (of whatever type), kindness, compassion and resilience will still be part of the human make-up whatever challenges may need to be met.
We may put up the most ridiculous Health and Safety rules possible – they will not save us from many of the consequences of life, which seem totally beyond our control. In the same way, we must believe that, whatever hurdles are put in our way, our inner strength will pull us through – leaving us with just enough to pull others through, by our actions, too.
1986: Coal mine canaries made redundant
Allen Frances Retweeted
Bad pharma and the canary in the coalmine for problems in modern medicine #statins #AllTrials https://cosmosmagazine.com/society/bad-pharma-and-the-canary-in-the-coalmine-for-problems-in-modern-medicine …
Your point being?
Sometimes truth is not something you dig for.
“Any sign of distress from the canary was a clear signal the conditions underground were unsafe and miners should be evacuated from the pit and the mineshafts made safer.”
Mary encapsulates so much here, and so well. We have been running faster and faster but losing so much whilst convincing ourselves that this is Progress. But maybe we have a deep longing too for it all to slow down, hence the popularity of Mindfulness, ‘to live in the moment’.
The problem with Mindfulness is that once Anxiety has overcome you, with all its physical limitations, concentrating on the moment is not, maybe, so helpful, and maybe distraction helps more. Mindfulness is more effective before we get too low, surely. To avoid stress overwhelming us in the first place.
We need our minds to work. A lot of today’s breakthrough labour saving inventions and life enhancing goodies may be affecting our minds, and there is little or no regulation for these. Take for instance the air freshener Febreeze. This can affect mood, according to scientist colleagues of ours. Same goes for plug-in air perfume blocks like Airwick. There are also plug-in ferromone dispensers to calm down the minds of cats when they seem nervous in your home. If it’s affecting the unsuspecting cat’s mind, what’s it doing whilst transmitting to you?
And then there is the synergistic effect of various things in our environment, like pesticides and medications, and even electro pollution. Formaldehyde in carpets, insulation materials etc. No doubt we are adapting to cope with all this, evolving, as humans have always done, but what if some of us can’t, or if we are vulnerable cos we are unwell right now?
WiFi invisibly permeates our homes. Like the effects of mobile phones, do we stop to consider what its doing to our neurology. Physically too there is now a condition called ‘texter’s neck ‘, never mind repetitive strain injury from typing and sitting too long without a break at a computer. When we are concentrating hard on writing or painting, ( and here I am very guilty of this), we may not notice how still we sit, for how long and how this may affect us. This can lead to inflammation, which we now learn, can affect the brain and cause depression.
One more thing – when we sleep, we apparently miraculously recharge our cells. It’s nature’s way of healing us, fuelling up our immune systems. But if we are battling intrusion by microwaves which are depriving our brains of that peaceful regeneration time each night, or if we have to work the night shift, couldn’t this be affecting both our mood, and our ability to live healthy calm lives. All the Mindfulness in the world may not counteract this.
So, maybe, unplug the TV at night, put the WiFi on a time clock so it’s off at night, don’t sleep next to a radio alarm clock, don’t sleep near TV or other remote controls that contain batteries. I know all this can sound ridiculously alarmist, and we mustn’t get over anxious about it, but we can just be aware of doing the best for ourselves where we can, and measure the results. Notice how we feel after a month of this. Keep a brief diary, jot down notes on how our concentration is. I haven’t mentioned alcohol, but that’s something else which probably has a bigger effect than we’d guess. (I sound a real killjoy here, sorry 🙂 ). Unlike all the expensive NHS preventative testing that Sally so wisely highlights in her post, we can just treat ourselves to a little slowing down for part of each day, in our own personal bubble. And even if we can’t sleep, we can lie there imagining beautiful places where we would like to go, safe in the knowledge that our trusty brain cells are refuelling our immune systems, giving us the best help for dealing with whatever tomorrow throws at us. Nature is amazing, if we slow down and embrace it, it can hug us back.
I fear that in dealing with injuries by mental health medication there is an additional complication – ignorance.
In the slate quarry villages of North Wales, as you say, ‘chest problems’ were numerous – almost a badge of honour for your time spent at work. The same was true of the coal mining villages of South Wales. All workers knew of the risk and all of society – at least in the local vicinity – accepted the reality of the risk and of its consequences. It was accepted with the same view as a mine or quarry ‘accident’ The only difference being that the former was a slow death. The respect shown at such funerals – be it a ‘works accident’ or a lost individual – encompassed the gratitude of the whole community for the ‘job well done’ that had cost lives. As you also stated, generation after generation carried the same trade on – mainly because there was very little other employment available in those areas. The stakes were high but not being able to feed your family was unthinkable.
With mental health problems, there is a difference. Very many individuals find it very hard to share the fact that they have a problem due to public misunderstandings of their situation. It is unknown for anyone to be actually proud of their infliction, that’s for sure!
In times gone by, the location of a mental hospital to which a relative had been taken would be whispered by family and friends – as if such an illness was unacceptable in a respectable society. Have we moved on from that situation? I would say that not a lot has changed. Our large mental hospitals are gone – sufferers are now ‘in the community’, but are they ACCEPTED by us? I fear that in many cases they are not. Let the local council decide to grant permission for a ‘respite care house’ to be available in an area – then you can judge whether or not we are accepting of sufferers today! Even family members sometimes have problems with accepting the reality of such illnesses – and to make it easier all round the patient keeps the true extent of their illness hidden.
If we add to this the ‘adverse reactions’ to such medications which often lead to poor behaviour patterns, the bad luck of lack of acceptance plummets to an impossible depth.
How often do we see reports of such behaviours describing the culprit as ‘lonely’ or ‘wasn’t a good mixer’?
Unless we can change the attitude from this ignorance of the reality of mental health problems and the, quite possibly, horrendous unexpected side-effects to an acceptance that it can happen to any one of us, I cannot see how we can arrive at answers that we are seeking.
The quarrymen could be heard wheezing their weary way around the villages. The dust on the faces of the coalminers was enough for anyone to know that their lungs were bound to suffer eventually.
What of mental health sufferers? – they look like you and me, in the main they behave like you and me, society’s expectations of them are the same as is expected of the rest of us – why? – simply because there are no obvious physical signs, no accepted difference that can be measured BUT, you only have to listen to their plight to find out exactly how we make them feel. Due to our ignorance, they feel like the lepers of old – unfit to be in our midst lest their affliction will catch on to us too.
Our only chance of changing things and getting the full pressure of public opinion on- side is by educating society . The easiest way to do that, surely, is by showing our full support for inclusion and pushing for a better, more sympathetic attitude from all concerned parties. In order to do that, we must ensure that our example is one of encouragement whereby all patients – new or old – feel comfortable enough to open up to their problems and share them . They can only be expected to do this when the groundwork has been done and we have their confidence. The answer lies within their experience – but they will only share when they are reassured that, in so doing, they will not be blotting their copybook even further.
Mary has it right when she says people suffering mental distress look just like you and me. That’s cos we ARE all, at heart, just the same. The Welsh villagers all knew each other, they had a sense of community, they cared about each other – even if there was gossip when someone was ill, it wasn’t cruel and excluding. Loneliness was not the problem then that it is now. And loneliness is apparently one of the major causes of mental distress. Some people, especially the elderly, may sometimes even go to see their GP partly to sit in the waiting room and see all life going on around them, young and old, as maybe that’s the only human contact they have that week, and they see the GP as an anchor who knows and cares about them when no one else seems to. They can talk to him or her, just for a few moments.
If we can rebuild the small communities again, set up little centres where those who are feeling they’d like somewhere friendly and accepting to go, to share ideas and activities, maybe we can kindle a sense of belonging and care for all again. One way of doing this is to use rural churches as community places, where everyone is welcomed, faith or no faith. Lots of them, like ours, are little used. We’ve been creating a Friendship Room in ours, so we can welcome anyone who wants some companionship. We are all going to give talks and demonstrations on our special interests if we’d like to, (I’m doing arty stuff and one on Vaughan Williams’ music!) and get to know each other. This way we can maybe get back to how things were and talk our troubles out and we don’t need to specify whether we have mental distress or not, unless it helps to do so to gain understanding. Hopefully less of us will then need medication! But we can share information about what helps us to cope from day to day, and of course, knowledge is power when it comes to looking after ourselves and our communities. It will be fun to paint together, listen to music, share favourite books, play ping pong, and lift our spirits….maybe not whiskey though 🙂 .
You know, I don’t doubt for a minute what y’all say about the fatalistic attitude of Welsh quarry workers towards the awful hazards of their job. Lord knows I have seen the same sad attitude here, in the steel mills and other settings. But we also have to remember the times that workers have come together, and stuck their necks out big-time, to challenge being treated as disposable tools. It’s happened at so many points in our history, but perhaps never more than in the 1960’s and ‘70’s. At least here in the States.
The most dramatic example was the nationwide coal miners’ rebellion of 1968-72, when coal miners formed the Black Lung Association and later, Miners for Democracy to take back their pro-company union. That led in 1969 to a statewide wildcat (illegal) strike of 40,000 West Virginia miners – and a second one when thugs hired by the union president murdered Miners for Democracy leader Jock Yablonski. But the coal miners’ revolt wasn’t alone; it inspired a significant movement among textile workers against Brown Lung. Not to mention struggles among California farm workers against the scourge of pesticides and the short-handled hoe. (Imagine that: having to fight just for a tool with a wooden handle long enough that you didn’t have to bend over ten hours a day!)
And it’s been just about the only thing that has ushered in change. It didn’t happen because of new discoveries in medical science, or because a dangerous old technology was replaced by a safer one. I’d like to believe the state imposed it in the interests of a more efficient system – but it’s kind of hard. As long as there’s plenty of workers waiting in line to take the places of the dead and injured, they don’t seem to care. Sad to say, in conditions of rising unemployment and poverty in West Virginia, Black Lung is making a comeback. As are nonunion mines. When they see no choice at all, people will do desperate things.
So what does it take to usher in that kind of rebellion against those poisoned for the profit of corporations–not as workers, but as consumers? And allegedly for our own good? I don’t have any good answers. The coal industry got plenty of help denying any problem between coal dust and Black Lung — but nothing to what pharma gets from doctors who, after all, rely on the product in order to ply their trade! I think the atmosphere of the times led people to actually believe they were worth more, and to see a huge gap between the world we had and the one that was possible …
A fairly decent introduction to the Black Lung Movement here:
Johanna,I also think that people, in those days had the courage of their conviction which, surrounded by tight-knit communities, pushed their ‘fights for rights’ forwards. Today, we seem to have lost sight of ‘strength in numbers’ mainly, I fear, as Heather says, due to a huge loss of ‘gathering together’. Our moral fibre seems to have all but dissolved or perished.
Urban life has met with a loss of ‘belonging’ due to the disappearance of industries. Rural life has completely changed with many village properties advertised for sale “within commuting distance of” an urban area. Coupled with this is the fashionable buying of chapels/ churches and pubs and converting them into living quarters. Once such places disappear, the life is removed from the village. Ours is one such village. Built around the local coalmine (n. wales had a couple too!), it had, at its busiest, a school, around 5 pubs and roughly the same number of chapels. When we moved here, just over 30 years ago, the school was long gone, all but one of the chapels and pubs had closed. The last chapel closed soon after and the last pub disappeared about 6 years ago – to become a private dwelling. Whereas we all used to know each other within the village, now, with no meeting point, news spreads very slowly and due to that people are beginning to lead insular lives even out here.
Heather, your ‘gatherings’ are similar to the uses made of our chapel hall – down in the nearest town may I add, not in the village. Every day and evening, it is being used by different groups – many chapel linked but also non-denominational clubs. Maybe a chance to share the Rxisk message at such meetings?
Oh YES Mary, absolutely! We will spread the word about Rxisk, and offer all the support for mental health distress that we have learnt. We will pay for Mindfulness teachers, run relaxation sessions, offer self help courses, all interspersed with creative fun things, painting, writing, music, and learning about each others’ special interests and hobbies; we are also having a library there, of books people have donated. In other words, we hope to re-kindle village life, and even attract others from surrounding villages and hamlets.
Like you, we once had a Post Office and a school and maybe once there was a shop, long ago. Now the old pub, which had been closed for a year or two, has been bought and turned into a ‘gastro pub’. There is a travelling Post Office for one afternoon a week. That’s all we have. The pub is smart but not as affordable for many as it once was.
We decided we needed to do something. This all came about cos our little church was going to be de-consecrated and sold off, and the group of us who live near or around it and go to services (we have a monthly one) were asked what we felt about it. I got up at the meeting and said I thought the best use would be to use it to help those suffering from anxiety, depression etc, who felt alone and excluded, and usually this was linked to feeling afraid that no one could identify with them.
The church is small but cold. When at the worst moments in his medication induced Anxiety, Olly would go over there and sit in the peace, absorbing the lovely calm energy, and try to feel stronger again. He felt there was something about the timelessness of it, that people had been sitting there through the centuries, life had gone on, adversities had been overcome etc. it was a comforting space.
Also, I have to say that it was our local vicar who went to see him in hospital when he was first ill in 2001, and encouraged him and acted as advocate. Olly was not particularly religious but very spiritual and caring and tuned in to Nature. The vicar had once been a chef in a London hotel, become a monk, and gone out with food to feed the homeless each night, before coming here and adopting, with his wife, two little boys with Down’s syndrome and a little girl with other developmental difficulties. You can see that he was well in touch with life’s lottery.
So after Olly died, and the church was to be closed, we launched a project to save it, to adapt part of it to make an easy to heat area by dividing up the space, removing some pews, adding facilities like a kitchenette and loo. We are calling it a Friendship Room and some of Olly’s money, which he left, asking for it to be used to help people like him who suffered anxiety, has been used for it, and we have fundraised, and the Heritage lottery have contributed to vital repairs to the church. It is nearly finished. There will be services just as before, but a regular activity programme the rest of the time. When you are depressed or suffering Anxiety, its hard to even get out of bed sometimes, but if there’s somewhere to go, when you feel up to it, (some days you may feel more able to than others), where you don’t feel you are different or not understood, where there are creative distractions to lose yourself in, it surely will help your healing and bring hope. Especially when others tell you they too have felt uncertain and unwell, but things have got better, and will for you too. We think Olly will be pleased with the first steps we’ve taken to ‘help others’ and doing it in concert with neighbours, has helped us keep busy and deal with our grief. We have plans to do more, this is just the beginning :).
Well, on DH’s theme on being occupationally made ill from a cause known to be possibly hazardous, here’s another one hot off BBC2 ‘Victoria Derbyshire’ programme this morning, with more to come. Lord Dannett, head of the army, now suddenly admits that cos his son, also a serving soldier, was made mentally ill by Roche’s antimalarial drug Lariam, he himself refused to take it!! Questioned as to why he felt it was acceptable to subject the rest of his troops to this concoction when he had personal experience of its severe adverse affects – termed ‘the worst kind of friendly fire’, he sort of said he was sort of sorry, but they had been busy with Iraq and Afghanistan, and also, ‘the army doesn’t have much money’.
.Lariam is a cheaper drug than other antimalarials and you only take it once a week. Literally hundreds and hundreds of army personnel have been reporting awful mental side effects for ages, but nothing has happened. Cynically I can’t help wondering whether now that a lawyer is putting together a case for a mass class action, people at the top are getting twitchy and coming out of the woodwork.
I can remember Esther Rantzen talking about its dangers on the BBC ‘That’s Life’ prog back in 1996 I think.
We did a few paragraphs on this Roche drug on the ollysfriendshipfoundation.org.uk Facebook page a while back and met up with one of the damaged civilian sufferers, who only took it once and has been left mentally scarred. Interesting that no one so far on the programme named the manufacturer Roche in words out loud, we could just barely discern it in print on the packet, small, in green letters, right hand corner. There is more discussion on this drug later this morning, so maybe they will then. I am not holding my breathe however.
So, I was both incensed and delighted to see this coming to a head. We have had correspondence with the MP Johnny Mercer who has been trying to get a Review of this drug in Parliament. Jolly good job he was himself ex-army and listened.
So, go figure that, for another case in point.
Lord Dannett said he was lucky when his son was invalided out from duty with his mental health disruption, he got prompt treatment. One wonders how he is now and what treatment he got? There have been a number of reported suicides from Lariam, never mind the broken marriages and one dad on the programme saying he feels he has been turned from a nice person into an ogre. It’s the thought that his little girl needs a daddy that helps him to hold on when suicdal thoughts plague him. He said it was like his brain had been retired. ‘In many respects I am a broken man.’
What in heaven’s name do Roche (who also make RoAccutane, the acne drug that we feel made our son so ill) think they are daring to do with people’s neurology?
More to come…..
PS – a few small corrections from the next part of the programme –
MP Jonny Mercer did manage to say the word Roche once,
For ‘brain being retired’ please read ‘re-wired’
Lord Dannatt’s name I spelt wrong
Apparently 17,316 people have been affected…..one senior army officer’s wife wrote to Dannatt after her husband’s suicide begging them to stop prescribing the drug, particularly as the very nature of the job pre-disposes one to PTSD. Dannatt already knew what it had done to his son – who wasn’t actually at the time serving in the army, he was going to Africa before army service (so apologies too for getting that out of sequence). One wife said her husband after showing signs of mental damage from Lariam, was given 20 different antipsychotics, he got worse and worse, he had terrible reactions to these and other drugs, she repeatedly told them he couldn’t tolerate them, but the medics wouldn’t listen…..here we go round the mulberry bush, again and again and again…..
Please if you can, watch this programme again on Iplayer but take a few calm deep breaths first. Especially when listening to the defence of what has happened, and how it was allowed to happen, by the ex Surgeon General, Dr Louis Lillywhite. Not well named, in my fury I venture to say.
Great pair of comments.
You’d think it would be better for people taking a drug for other than psych reasons.
It does appear that it literally has to happen to you. It’s fallen on deaf ears to get my doctors to understand or believe me. It’s also been completely futile and very invalidating when I have told friends and close colleagues in the field. I am a psychologist. Nothing has changed with how they work with their clients. They are all on SSRI’s themselves and it hasn’t changed their outlook on their own treatment. I am discredited. Probably think that there is something wrong with me and I am some kind of nut.
I also told a psychiatrist who is involved with treating residents. He was one of the few people on the planet who sorta believed me though thought it was rare and something with my history not the drug. He said he won’t change how he teaches and won’t tell his clients when he goes over the medicine about the type of adverse events I have.
I’m starting to think we are doing it wrong. Like you, I want and even expect people to believe me. I’m not a therapist, but I am a psychologist, a distantly former academic. The word is out about psych drugs. The drugs can have adverse effects. We have led the horse to water, and by gum, it’s drinking. So what’s next? I say massive settlements with the drug companies for millions of harmed individuals world wide.
Being listened to and believed is so important, especially when you are feeling shaky and vulnerable cos you are not on top of your game.
It never ceases to amaze me how backs are turned and ears go deaf when unacceptable information is tentatively offered.
Here follows another case in point, re occupational hazard v closed ears. (Please excuse me for keeping adding snippets to this string, but this subject really captivates my interest).
We’ve looked at miners, hatters and mirror makers (mercury poisoning), and the army. There are also serious mental health hazards for farmers, and as we know, suicide rates for them are high. It’s put down to the isolation of the job. But could there be other less obvious reasons too?
We used to run 100 Llyn pedigree sheep on a Worcestershire farm, bounded by other farmland. We dipped our sheep in July cos otherwise they could get fly strike – a really horrible problem which I won’t go into here, but which causes great suffering to sheep and in the worst cases, they have to be put down. The regulation Dip used to contain organo- phosphates, and however well covered up the farmers are, you can get splashed or even soaked, helping the sheep to swim through the tank. (My cousin even once got in with a sheep who’d gone under, to rescue it!). Soon after July, many farmers used to get a sort of ‘sheep dippers’ flu’, sweating, fever, headache, weakness, muscle aches, nightmares. But they had to keep going cos animal care is constant. Gradually some of them lost their memories, couldn’t speak without slurring, had mental fog. They thought it was weird but tried to keep going, till some just sat in a chair and some became really suicidal and died.
On our farm, we always dipped on 14th July. We were always below par by 21st, which was our older son’s birthday. Naturally this really annoyed him. It took us ages to realise it was the reaction to the Dip! We also had water from a bore hole which may have had ‘run off’ containing nitrates from other adjacent farmland so that wasn’t good for us either, in retrospect.
But then, one day, when our younger son Olly was out playing on land near our boundary, the farmer next door was employing a crop sprayer who used a low flying plane. It was too windy and a whole cloud of spray came onto our garden and engulfed and soaked our son. He soon collapsed, and we carried him inside. (His little friend who luckily was far enough away, ran for help and told us what had happened). Olly was about 9. His tongue and mouth seemed odd and his right arm and leg wasn’t working right either. Our GP said he should be checked out in A&E. They did a lumbar puncture as he was by now twitching and behaving oddly. We meantime found out the name of the branded sprayed pesticide so we could tell the doctors treating him.
Now, here”s the interesting bit – they didn’t seem at all interested and wouldn’t even log it in his Notes! They discharged him a few days, still weak and having nightmare dreams and visions, saying he’d had a mild encephalitis probably, but would slowly improve. He ended up with a sort of slight ME but always after that had problems with memory. By the time he was 16 and doing GCSEs this was really worrying him. So he managed to see a Consultant (Dr Bob Davis) in Taunton who specialised in pesticide damage to farmers. He examined him and gave Olly a Report, explaining how the chemicals can affect his body’s acetylcholine activities, but also encouraging with hope by telling him that the brain can find new pathways when some get disrupted so the damage did not have to restrict him, with time. This helped our son enormously and he went on to get 13 GCSE’s, some were A stars, and later 3 A stars in Biology, Physics and Chemistry and an award for his school for his A level project work on ‘Absolute Zero’ which the Examiners said deserved publication. He had found little memory tricks which helped him a lot. I say all this, partly as a proud bereaved mum, but mostly cos it shows that when a Specialist listens and explains, gives reasoned hope, one can move forward. Dr Bob Davis sadly died quite early in his life.
The even sadder for Olly downside of this, however, is that Dr Davis warned Olly (and us) to steer clear of antidepressant medication as his tolerance to these would be poor if he was ever offered them. So when he got ‘low’ after being prescribed RoAccutane/isotretinoin at Uni for his acne, and saw a psychiatrist, this man amazingly absolutely refused to take any notice of Dr Davis’ Report and just pronounced it ‘unproven science’. Olly was given Seroxat, and a whole plethora of other similar drugs, even actually fitting on one. But no one would listen to the history as we tried to explain it, and Olly couldn’t, cos he was into a mini-psychosis by then. And so began his downward slide, despite enormous efforts to keep productive, running his own very successful business, for 11 years. We packed up sheep farming in the early 1990s to get away from the chemicals. We did however join with others and got organo phosphate removed from the compulsory Dip. There are still farmers out there however, damaged neurologically, who probably don’t know what caused their problem. Some have committed suicide. Dr Sarah Myhill in Wales is an expert on this, now a private GP.
One wonders if this is yet another example of the powers-that-be ‘not wanting to dig too deep’….pesticides are used on farms as the norm. Old ill farmers are not good at standing up for themselves or meeting up with others to compare symptoms. They may not even be able to drive any more. Might the suicides in farming be due to more than ‘loneliness’ alone?
So, yet another example of the patient not being listened to, because the evidence they are offering is not acceptable to those who are ‘in charge’.
Culturally it seems there are a lot of similarities with alcoholism in that some can use without problems, others have a definite allergy or reaction to the substance, and those who do are often stigmatized, left behind. People including doctors are often uninformed about the true nature of the illness, don’t recognize it when they see it, or are in denial. As in the other cases, free enterprise and basic profit motive are underlying.
And yet 12-step groups flourish peacefully (not in reaction to anything). Would there be support for putting something together along those lines? Not overtly religious or for the purpose of staying off substances but for the purpose of identification, sharing Rxisk’s message, and supporting all who seek support? Do you think the mere presence of groups like this in our communities would speak to those communities? Any other ideas? Let’s put something together.
Laurie that sounds a great resource. When little creative groups get together, sitting round making things, they get absorbed and start chatting whilst they work, about their ailments, difficulties etc. I’ve noticed this particularly when running painting groups. One could introduce the subjects which have come up on this Rxisk string, including alcoholism and why different people react to it differently, and where to find a 12 step prog group to join. People love to share resource knowledge when they feel they are helping others – there is a real feel-good factor when one does it, so long as one doesn’t thrust it on people uninvited :). I don’t mean they do it for the feel good factor, I mean they discover the feeling afterwards. It’s like empathy and spreading a little sunshine by a kind word or smile. It’s what we are here for really, I think.
Katie – I admire your attempts and efforts to spread the truth; just so sorry that there are so many weak-willed and jellied-backbone professionals judging you. Where is THEIR proof that these things are so safe? Keep at it Katie – you never know, the next one you approach may truly believe you.
Laurie–the idea of in-person support groups sounds great. I wonder though how we transition from online to in-person? I think in-person would be very powerful.
Katie, I think the main thing needed would be people who could commit to getting the groups off the ground. Not leaders so much as facilitators who would nurture groups until they become self-sufficient (modeled after 12-step groups).
There are elements to 12-step groups that make them quite resilient and it wouldn’t be too difficult to try to put together a group format that each of us could replicate in our own communities. These groups, if done correctly, are immune to many of the problems that can come up. (For example, becoming distracted from their primary purpose or co-opted).
Much of what Heather has suggested is what I’ve envisioned. A space for supportive relationships, healing, and for the sharing of information. In 12-step groups we share our experience, strength, and hope while avoiding crosstalk or giving advice. Everyone has a chance to be heard and participants are encouraged to “take what you like and leave the rest.” If necessary, people can follow up on a topic in conversation after the meeting.
So this would require people who are willing and able to become part of a network and to actually build the network. A starter kit of materials might be made available online pretty easily, but it would take the dedication of many to see these face to face meetings actually taking place in our communities.
Laurie, a brilliant idea. Exactly what I feel we need. Maybe if we can get a core group going, like Mary and Jane have suggested with a prelim meeting, we can formulate ideas like this and set some aims. We can then gain strength from mutual support. Many of us are not as fit as we’d like to be these days, so doing it alone is daunting, but to be part of a designed process which has simply the wish to help others in situations we or our families have suffered/are suffering, would surely give us strength.
There are several courses on self help that the NHS offer for carers and sufferers and we’ve been on them all, but none discuss the stuff we in RxISK all now know about medication, its possible hazards, how to get a listening response from their doctor, what information to put before him/ her etc….how to really help a loved one who is going through mental distress, where our help would be welcomed, how not to be afraid at times of crisis….what facilities are really available to us ( not just what we are told should be) and which really work.
we very much need something tailored to the respecting of the patients’ right to be believed over Big Pharma (like Katie B-T said), something showing we have access to the latest science, our facts are right, and we are using common sense and compassion. And this group resource could be spread all through UK, Ireland, everywhere. I hope this doesn’t sound at odds with what you all think, but if we meet, we can maybe work something out together that fits. I know it would be perfect as a core resource for our own Project, so we could use our Friendship Room group as a pilot for it and see how it was received and get a feeling of results.
Hi – just wanted to say, some EXCELLENT essays on this thread – you ‘guys’ write so well.
No time, unfortunately, for me, right now, to put ‘pen to paper’ to express my opinion – but, then, its already been done so very eloquently by Sally, Heather, Mary et al.
PS. I am still seeking to convene a get-together meeting of us like minded DH’s Blog followers – so, do please email me (through David) to get in touch so I can work out the most suitable location, time and date (and/or Skype arrangements for those who are interested in chatting with us but can’t attend).
Aiming, now, for something late autumn time ……
ben goldacre @bengoldacre Aug 31
I’ve prescribed a lot of SSRI tapering regimes in my time. This petition for tapering kits is an interesting idea.
Design a new one for Treatment Resistant Depression
I have just signed that petition – a brilliant request and so necessary for successful tapering. Guess the ‘Specials’ producers won’t be too happy though! It’s a way to make a very positive difference though isn’t it – both for individuals (to ease the pain of withdrawal) and for the NHS service (in reduced costs). Such a simple request, hopefully, with a brilliant outcome. Annie – well done, again, and thank you.
Heather – since reading your comment about the sheep dips about a half hour ago, I can still smell the sheep dip! The disinfectant at the gate during an outbreak of foot and mouth is another vivid memory!
The work that you are doing is ABSOLUTELY FANTASTIC and will support so many – during which, as you say, it supports and helps to heal you too. Two-way traffic – exactly what’s needed. Am highly concerned about lack of info. etc. in the Welsh language here for farmers ( in particular) and trying to work towards improving that at the moment – hoping to encourage a young person on board and, by so doing, gather in a younger generation too.
Thanks so much Mary for your warm support.
For Welsh farmers and getting help re sheep dip damage, I suggest Googling Dr Sarah Myhill and looking on her very comprehensive site, then maybe emailing her secretary with request for info and guidance. Sarah is a wonderful energetic and extremely bright person whose research is always up to the minute, and who cares deeply for her patients. We’ve known her since Olly was a teenager and the Dip etc made us ill. If you want to, you could say we’d suggested you got in touch.
A GP we’ve come to know via a meeting at a Loneliness Conference last year in Hereford, has recently written to me…. (he knew what had happened to Olly and had just had a young girl patient who’d attempted suicide on RoAccutane). His ideas are very much in tune with Rxisk, and his attitude to medication very balanced. He says he worries about medicalising unhappiness where it is due to inequalities in society or unhappiness, and he feels very uncomfortable ‘patching people up’ and sending them back into the same untenable situation, ‘one has to consider the deeper causes, rather than antidepressants being used as a quick fix’. He also says that there is now more research going on into gut microflora in all sorts of conditions, ‘while there is actually very little evidence for the serotonin hypothesis of depression, so the one thing we do know is that most of what we believe is wrong!’ He says other counties are reporting very good results from peer support and MH drop-in cafés and he feels this is the way forward.
I know Dr Myhill is very interested in the gut flora stuff too.
When we had the sheep dip problem, we got a sort of spreading sensitivity, couldn’t stand the smell of bleach, petrol, polish, frying onions – all our sense of smell was intolerably heightened. We started taking a vitamin powder, devoid of anything one could have allergy to, mixed with water, each morning before eating, to line the stomach. At first we took it before each meal, now, 20 something years later, we just have a small scoop in water before breakfast. It contains a balance of all vital vits and mins. There are 2 categories of it, one a detox for the body, supported by vits and mins, and one an ongoing supporting mixture. I don’t have shares in it :), but I do wonder if it might be of interest to anyone dealing with medication damage, just to supplement the diet and help the body’s recovery in some way? Its made by Nutri and called UltraClear Sustain. The detox one is UltraClear Plus. There is another called just UltraClear without the word ‘Plus’ but don’t use that! I did after a bad reaction to a steroid, and it was too strong a detox for my liver to cope with. It worked, but made me feel terrible in the process. The other two are bland and easy to tolerate, I find. I don’t think you’ll get it on the NHS but your GP will probably grudgingly agree to you taking it, adding that you get all your vits and mins from food! But at least one can test it to see if it helps. If you order it from Nutri, they will want to know that your GP has authorised it, so if interested, Google it and take the details to show. It isn’t cheap but comes in a large pot and we can make one last 2-3 weeks with one scoop each every morning.
I hope this doesn’t sound like advertising, but if inappropriate, feel sure it will get deleted by the Moderation process. We are not sensitive to smells etc now and our immune systems pretty good. We don’t take any medication except paracetamol occasionally. I guess the powder must help our gut flora.
Actually, I should have made it clearer that my concerns re;-Welsh farmers is more to do with mental health issues as a whole rather than sheep dip in particular, although that obviously needs to be dealt with as part of the whole picture. It concerns me that suicide in the farming communities is on the increase at an alarming rate. MIND now has a special outreach facility which visits rural areas but, as we all know, MIND too is rather limited in their acknowledgement of adverse reactions in real terms. Getting that info out there, in Welsh, is my dream. To be able to discuss your innermost feelings is difficult enough – having to do it through your second language can prove impossible I would imagine.
Archives To ron to
Presumably, Ludwig’s experience as a survivor informs her sense of humour throughout the book. On the inside cover, Ludwig explains in large, red-ink lettering: “Your subconscious makes a good burial ground. Don’t excavate!”
The dedication inside the book may also resonate with many: “Dedicated in a playful spirit to our head shrinkers, some of whom I’m sure have helped some of the people some of the time.” Hey, psychiatric humour can be fun.
I’m Baltimore, Maryland, USA if anyone lives anywhere nearby. We could discuss launching the in-person support group and/or support each other.
Picking up on Johanna’s point about the impact of worker’s groups – aka trades unions and the fight to get industrial injuries recognised and compensated – I couldn’t agree more. (and thanks v much for the link – fascinating). But – here in the UK the economic impact of strikes for better working conditions was a huge bugbear politically. Bringing down the unions was an explicit aim of Mrs Thatcher. However, belonging to a union, with access to legal representation remains a massive help to many people.
As for the reluctance of working communities to threaten their livelihood by drawing attention to industrial health injuries – one pharmaceutical company back in the 1990s foresaw the eventual demise of organophosphates – mainly, as Heather says, used in sheep dip which killed I think – blow fly? A disgusting, distressing problem for sheep. The company started to develop an alternative, less toxic way of controlling the problem. The biggest nay-sayers and most reluctant group to consider a new, probably safer (more expensive) treatment were – the farmers. They couldn’t see why on earth they should use a newfangled chemical that cost 10 times as much as the old stuff. And carried on using it as long as they could. Which was basically as long as they could get hold of it by fair means or foul.
Ah, Sally, with regard to the farmers’ reluctance to take on the new product ( which I think was called Vetrisin if I remember rightly), the thing was, it was far more expensive, but no one, including Government, were keen to come out and say that the OP one was so dangerous, as it would have opened the flood gates for compensation for those, like us, and many worse, damaged. We only lost our living, not permanently our minds or even lives. So the farmers were ill informed.
Round the mulberry bush again – same old story, just like effects of antidepressants and anti psychotics again. ‘ Don’t explain and they won’t complain, just carry on with the same ‘. Of course farmers would worry about extra cost, many of us were running on a shoestring anyway, no good wool price anymore, sheep price right down in Recession in early 1990’s. And dipping was compulsory, we had no choice.
Another hazard was what the farmers did to get RID of the Dip fluid afterwards. Supposed to safely deposit it somewhere. We were introduced to a couple in Scotland who rented a cottage from a farmer, and unknown to them, he’d been tipping his finished-with Dip over a hedge into the cottage garden for some years. They dug a veg patch there, and, with their youngsters, started eating the ‘healthy organic homegrown lettuces’. They all got terribly ill. They followed the same treatment as us and we think they all eventually got better. They came to stay with us so they could visit Dr Myhill in Wales.
Getting rid of asbestos is equally concerning. It costs so much to do it officially that some people just dump it anywhere. Local Recycling refuse tips won t accept it.
Government seems to turn a blind eye to these things, instead of accepting that low paid people can’t afford high priced official removal of hazards, it’s wrong of course but it’s economics and human nature.
Forgive me for going totally off-track!
I read that Helen’s trial (re:- The Archers : Rob and Helen 12/4/16 post) is being aired this week – starting at 7 this evening on Radio 4. If no mention of ADs whatsoever in the ‘defence’, I plan to contact the BBC. Anyone else up for it?
Also found that the Album of the Year Award in the Progressive Music Awards 2016, went to the Russian duo (? or group?) called Iamthemorning with their new album called Lighthouse which is wholly about the ‘journey’ through mental health. Musically absolutely beautiful, gentle and uplifting – due to my hearing, can’t comment on the words ’til I get a copy of them!
Just a word of caution – final track is about a ‘mental health breakdown’ therefore need to be in right frame of mind for that one I suggest.
Bad Science affects us all:
Nobody is protecting us from unsafe drugs — not the government regulators, not the drug manufacturers, not the medical researchers, not the journals that publish their work.
The system is broken. Restoring Study 329 provides clear evidence of this.
So how do we fix it?
Justin is a Corporate, having an affair with his glamourous aide, who has re instated Rob as Estate Manager which has upset the locals who are wurried ’bout ‘elen..
Not to worry, Ian married to Adam, is up for speaking up for ‘elen..
‘Elen’s barrister is beside ‘erself, as her wife has left her..
Cue; Barrister to take anti-depressants..?
Elizabeth is about to embark on a dalliance with the Doctor..
If you don’t keep up with everyday farming folk, you are seriously missing oot…:)
The Trial…….at last..
Oh, whoops, no Annie, can’t let non devotees of The Archers think it’s that simple. The BIG current issue with the story is that Helen’s wife Rob, being, I personally think, someone with a Narcissistic Personality Disorder, has wormed his way (a good word for him) into the life of Helen, a very honest, straight wore arid trusting young woman, whose previous partner was a gamekeeper, depressive, and shot himself. After that she tried other relationships with guys and got very let down. It is only Ian, the gay partner of her cousin Adam, who has been a long time supportive understanding friend to her. Longing for a child before she was too old, she went used a donor and had her little son Henry, now 5. Very happy together with her market gardening family, she making organic cheese and yoghurt, suddenly along comes Rob, seemingly unhappily married. He bewitches her, ditches his wife, telling Helen how the wife is unstable etc. he
Initially Helen’s family do not like him (we should always trust our first gut reactions!) but he flatters and woos them, and then marries Helen, who thinks he’s wonderful, kind to Henry etc.
But things are not what they seem. He’s now got access to money left to H by her Gran, living in Gran’s cottage. He systematically cuts H off from all her friends and family. He gets sacked from his own job, and takes over hers. He is homophobic and makes endless trouble between her friends and family members, with a carefully placed ‘little word here, little word there.’ He discovers that after the suicide of her former partner, H became anorexic. He uses this to make her family believe him and not her. He rapes her to make sure she is carrying his child – he wants a son – and constantly confuses her between showing her love, undermining her self esteem, and terrifying her into believing she is going mad. Then he makes an appt for her to see a psychiatrist and gets her put on anti depressants. Her friend Kirsty can see what’s going on, particularly when Rob’s mother Ursula, arrives on the scene to back him up. The mother-in-law from hell cos she too is afraid of Rob and will do anything to appease his bad moods, even booking Henry into boarding prep school to get him away from H. H discovers this and is witnessed shouting ‘if you dare send Henry away Rob, I will kill you!’.
This is unfortunate as both Ursula and H’s mother hear it. They are by now intoxicated with Rob’s supposed heroics, especially as he rescued villagers from severe damage from a flood that, without their knowing, by blocking gullies, he had caused.
In the end, seeing H looking ill and a shadow of her former self, Kirsty suggests she ring his former wife. She does, and learns that ‘Rob is a monster’. Kirsty lends her a mobile phone (Rob has a tracker on her own, we later discover) with the number of a Help Line for those suffering domestic abuse. H has admitted to Kirsty that Rob has slapped her….’but it was my own fault, I made him angry’ (!)
She calls the service and we assume she discusses the rape. Rob is still forcing himself on her in the last weeks of pregnancy and Ursula pushing her, against her will, to have a home delivery, despite the fact that she had eclampsia with Henry’s birth. H manages to get the courage to discuss it with the Consultant and get her personal wishes respected.
The most important thing, for DH’s Blog followers, is that thanks to Rob she has wrongly been put on antidepressants. When she finally decides to leave Rob, she packs a case and tries to do it in a civilised way, explaining to him, but he goes berserk, takes a kitchen knife from the drawer, hands it to her and says ‘the only way you will get away from me is by killing yourself, so go on then, do it! ‘. Henry, frightened, comes downstairs, Rob lunges at him, shouting obscenities at him, so she stabs Rob with the knife he’s put in her hand. Prior to this, she’s called Kirsty to ask her to collect her, saying she’s leaving, and to collect her in her car. (Rob has curtailed her driving herself from the start of the pregnancy).
H uses Kirsty’s loaned phone to make this call.
My hope is that that call may have picked up and recorded what really happened.
Currently Rob has custody of Henry and wants the new baby too, which is in prison with H where she is on remand.
So now the Trial begins. We have all learnt what Narcissistic Personality Disorder had cause, the wrecking of lives. I just hope justice is done….
Oh yes Mary, we are all geared up and ready for the final countdown. My friends smile cos I keep sending them plot lines I hope will emerge. With you all the way re ADs, definitely up for it. I realise some people don’t think it’s cool to acknowledge that they follow The Archers, but we have, since I was a little girl and Grace Fairbrother died in the fire. We always liked it especially so once we became small time farmers. And since we’ve lost our family, we find it’s an anchor point to look forward to whilst we cook supper. We feel its like a club we belong to, full of old friends. You could term this as ‘sad’ but actually I think it’s a mental health resource in a way. Eastenders was too dull and repetitive and pretty miserable. So, now let’s have justice for Helen, and see Rob hoist by his own petard! :).
Thanks for the recommendation of ‘Lighthouse’ music, we’ll get it. Music is such a soothing, timeless, wonderful thing. Just listening to Vaughan Williams’ Lark Ascending as I write. So beautiful and so everlastingly calm.
For Heather and other music lovers, here’s another music link – by Lucy Spraggan, who is an Ambassador for Young Minds and appeared on X factor 2012 but had to drop out due to mental health problems. Writes all her own stuff – slightly reminiscent of Victoria Wood but a more solemn version. Song ( with video) is called Dear You, and this one too is about mental health. Twist in the tail, Heather, please be aware of that.
I’ve been reading an earlier post series on the RxIsk blog by Sally on benzodiazepams, and I just wanted to add something on this thread about the link with physical occupational injuries which may not be realised.
After an art training, I became a very junior social worker in a hospital Social Service Dept, (they used to be titled ‘Lady Almoners’ historically, then MSWs, before they were taken out of the hospitals and put to work out in the Community). But I never lost my love of art and used to design cards for Save the Children, wanting to make a contribution to their work but not earning enough as a social worker to make much of a donation. When I married and moved to the Midlands there was no immediately available suitable social work job to be found, so I carried on with my art and became, over the next 10 years, one of the main designers for ‘Gordon Fraser’, at that time a well known greetings card company.
Having been born with one rather dodgy eye, I used to work often bending over a magnifying glass when parts of the picture required a lot of detail. I got a lot of migraines, which were investigated, and I used paracetamol to alleviate them, but I never made the physical connexion.
After the birth of my first child, a botched Caesarean left me having several miscarriages, cos of internal damage, so I was given an artificial hormone (not needed, as it turns out) to which I had a terrible reaction – overwhelming fear, akathisia, terror of being alone, etc). It started the day after I took the first pill. This awful reaction went on for a year. Looking back, I remember how irrational and weird I’d also felt in the 3 months before my wedding when given the contraceptive Pill, and had to stop it. I don’t think this did much for my reputation with my husband’s family, coupled with the fact that my lovely clever dad was manic depressive, so they assumed I would inherit it, as would my kids! (None of us did, by the way!)
Anyway, I was given Valium for 12 weeks to deal with my post-Caesar anxiety, and it worked like a dream for me. I went on painting, caring for my little son, and I have to say, the artwork I produced, was the best I’d ever done. I was lucky that when I tailed them off and stopped, I had no problems. The problems I had were physical, my bladder having been stitched up with the womb in the wrong place after the birth, so passing water was agony, for 2 years. I wasn’t of course believed, until I finally went off and got a second gynae private opinion, who discovered at once what had happened, opened me up, put things right, and I was just left with some adhesions but much less pain. There was residual damage though, so we were only able, with careful pregnancy monitoring, to have one more baby, our son Olly.
I went on working at home as a designer, using a sloping drawing board, and often the hand held magnifying glass. And over time, I experienced hearing problems, giddiness on a regular basis, tinnitus (so I could never use headphones) nausea, and neck and back pain. My face became flushed, like a little beetroot. I reported the giddiness and was told it was physiological, ‘a mother trying to work and care for kids at the same time, too ambitious’, It was all apparently down to self induced stress. When it worsened, a neurologist told me my brain was cross lateral ( whatever that meant) and to breathe into a brown paper bag.
When it got so bad that I could hardly see, and was too dizzy to walk across a room, a cousin of my mother’s introduced me to a book called The Slipped Disc and the Aching Back of Man’ by Dr J. Walker Naddell. He maintained that symptoms like mine could be due to vertebrae misalignment. We rang him and he agreed to see me. My husband took the seat out of the car so I could lie flat and drove me hundreds of miles that night to Glasgow, where next day, I was Xrayed privately by Dr N and shown to have a neck like the leaning tower of Pisa. Vertebrae touching the spinal cord. He gave me a couple of Valium, and when it had had time to work, manipulated it back to straightness.
Suddenly the giddiness stopped, the nausea abated, and I could see clearly again. My ears stopped ringing. Dr N said lots of women present with symptoms like mine, are told they have ‘stress, anxiety, depression’ and given antidepressants. If they are ‘lucky’ they get Valium, which relaxes the neck muscles, but no one thinks to Xray the neck. So the misdiagnosed problem goes on and on and they can’t live without the drugs.
In later years I painted a one-off design featuring my book characters for a wellknown wallpaper company. (I was a writer by now too). They sent one of their designers up to my Studio to give me format instructions on layouts etc. He told me that most of their in-house designers are a bit deaf, have bad posture and neck pain, cos of the endless siting hunched over the drawing boards, concentrating hard as they paint. This constricts the blood flow to the brain. It’s an occupational hazard!
So my point is (and I apologise for the time taken to get to it!) – how many people start on Valium and antidepressants for a physical cause like this, and are never properly diagnosed and treated? So for them begins a lifelong hell of unnecessary medication.
The upshot for me was that I no longer looked like a beetroot, was rarely dizzy, did exercises, and altered my work routine. I had to pay for regular physiotherapy for years. When I first went back to see my then GP with a letter from Dr N, he said ‘how much did you pay this quack?’. He didn’t acknowledge what good had been done and wouldn’t authorise physio, so we did it ourselves. But had my wonderful husband not carted me off, at once, to Glasgow, I dread to think what would have happened to me. I did have a small ischemic stroke years later, from this rather dodgy ‘occupational’ neck (also misdiagnosed as a bad migraine) but then in 2001 in a bad car crash, broke the neck anyway and got miraculously fixed with titanium nuts and bolts. But I understood my occupational cause and tried to avoid further problems but kept managing to work.
I just wonder how many people are walking around nursing vertebrae problems which could be adding to the horrible side effects they are suffering when trying to cut down their medication. Valium definitely helped my neck muscles, even in the early days of designing for
Gordon Fraser in the 1970’s so for anyone to come off Valium who has hidden neck problems, the effect could be far worse than the average, dizziness, balance, etc. I’m simply suggesting that an X-ray might be a good simple way of making sure all systems are working to best capacity and that blood is getting to the brain properly.
It is no surprise to learn that you are a writer! – but to read everything that you’ve gone through in your life is an eye-opener. It is amazing how the human mind and body can, and does, bounce back through allsorts of problems.
I used to love the Gordon Fraser designs – never thought I’d come across one of their designers though!
I have not come across a cross-lateral brain as such before but cross-laterality is present in many people who are dyslexic. It simply means that the leading eye, hand and foot, usually are all on the same side of the body whereas in a ‘cross-lateral’ person, they are mixed. This causes all sorts of problems for them.
The brown paper bag I have heard of using to calm the breathing and increase awareness of the measured breathing in anyone on the verge of a panic attack.
I can’t see where your neurologist found a connection between the two things – there again, I’m not medically trained am I!
Not a listener usually, but the Archers is on my ‘to do’ list this week for sure.
Hope you enjoy Lighthouse – have just been told the words are ‘powerful stuff’!
PS – correction – for ‘physiological’ please substitute ‘psycholgical’. If they’d really seen it was physiological, it might have saved me a lot of later trouble!
Shipwrecked makes sense to me…the aloneness of it…the sadness of it. When a Psychiatrist lies to your face, even though he knows that you know he is lying…as he continues the charade…somewhere deep within one knows there is no rescue for the shipwrecked patients in our times. Times where we have War planes and rockets going after ISIS…we have a pharma controlled Medical Cartel pursuing wars against the Patient…and there is no way out…just further suffering until the Patient is broken down…the human Spirit broken until the fragments of life attempt to whisper “keep going”…whilst the Human Soul cries How?