Time to write - now, wouldn't that be a wonderful thing? Of course, all of us have access to the same amount of time (in the present moment, nobody knows what the future may hold) and we choose how to spend that time. I am constantly trying not to squander mine, to make the most of every minute, to focus on the things and people that are the most important to me. To lead a fulfilling life.
Recently I have found myself shooting off in all sorts of directions, all of them very interesting, and found myself struggling to sort out my priorities. Last weekend was extremely busy. On Saturday I attended a writing workshop in Bournemouth (thanks, Amy Mason of LitUp who organised the day, and Andrew McMillan, poet and very inspirational speaker). The day confirmed the thing I keep coming back to - I am a writer, I need to write and want to write more than anything else.
I just need to find the time to write. Well, the workshop day was about exactly that - how to be a full-time writer, how to fund your writing. Amy spoke very knowledgeably about writing residencies, and about bids for Art Council Funding, and Andrew, who has just been appointed Senior Lecturer in Creative Writing at Liverpool University, also spoke about how to make writing pay.
It was the Arts Council funding information that I found most interesting. If you are a writer with a proven track record - a published poet, or an author with at least one book under your belt, you can get a 'Time to Write' grant. Time to write my novel, without have to rush around trying to do everything else simultaneously! I have already made preliminary enquiries to the Arts Council, and now I am going to keep my fingers really, really tightly crossed until I hear back.
A few days ago, I temporarily stopped trying to write my novel. It had been progressing very slowly, so I decided to schedule time into my diary to get on with it, and headed off to the library to do my work where there were no distractions. The first time I did this, it went really well. But then other things happened, I became busier than I wanted to be, and the appointments I had made for myself in my diary were all missed. I was disappointed in myself, but I soon rationalised this. I realised that it was not a failure and not my fault - I simply could not cram any more into my life than I am already doing.
I need to be able to look after my family, above all. Do the cooking, washing, cleaning, and give each of the children, and Paul, as much of my time as they need. And then when they are all out of the house (Monday to Friday, nine am to three pm, I can get on with other stuff. But ghost-writing, studying, teaching, helping out at the kids' schools... How on earth can I write a novel with all this already going on? Not to forget the fact that I need to walk the dog every day - which is a pleasure, but still takes time.)
So I am scaling back my efforts now. I have applied for the Arts Council grant, and if that doesn't work out I will find another way to follow the correct path to get to where I need to be. I am sure it will all work out.
Now, I said we had a busy weekend... We had planned to go and visit my sister on Saturday, stay with her on Saturday night, then go up to London on Sunday morning to 'do' the Science Museum. Meanwhile, the writing course came up, and so did a party for our youngest. So Paul had to ferry all the children around, and do all the packing for our trip, while I attended the writing course (who got the best part of that deal...?) He picked me up at the end of the course, and we went straight off to my sister's. It all worked out fine, although it felt like a bit of a rush.
The Science Museum was wonderful - although we couldn't see a fraction of it in the time we had available. Partly because with four children in tow there was a great need for refreshments and toilet trips and visits to the museum shop and so forth. But it was great nevertheless, and we are planning a return trip to London in the Spring, probably to the Natural History Museum this time.
Enough for now... I must get on and finish my entry for the Rethink your Mind competition. Here's the link again: http://www.rethinkyourmind.co.uk/ The deadline is looming, so do enter soon if you get a chance, and pass on the word. It's a very worthwhile project, and if that's not enough of an incentive, the prizes are iPads and a trip to the House of Lords!
Monday, 28 January 2013
Sunday, 20 January 2013
Wise words
Here's a link I came across while following another link from an article on Mad in America. I spend a large part of my days reading around the subject of mental illness, and when I come across a gem such as this, I feel that I should pass it on.
I just wish that this guy operated in England - I would love to be life coached by him. (Actually, with the Net, all things may be possible. I think I'll contact him).
Read on, anyway. I particularly liked Dr Borelli's discussion of the muddle that the defence of insanity has made in the criminal law. It says just what I have been voicing on here, but more succinctly (although I do think that allowances should be made for the adverse life circumstances that account for almost all crimes).
http://www.nelson-borelli.com/
By the way, (on another tack entirely) I am reading 'The Thousand Autumns of Jacob de Zoet' by David Mitchell. It is a very interesting book, although it does take some concentration. I'm about a third of the way through, and I would definitely recommend it.
I just wish that this guy operated in England - I would love to be life coached by him. (Actually, with the Net, all things may be possible. I think I'll contact him).
Read on, anyway. I particularly liked Dr Borelli's discussion of the muddle that the defence of insanity has made in the criminal law. It says just what I have been voicing on here, but more succinctly (although I do think that allowances should be made for the adverse life circumstances that account for almost all crimes).
http://www.nelson-borelli.com/
By the way, (on another tack entirely) I am reading 'The Thousand Autumns of Jacob de Zoet' by David Mitchell. It is a very interesting book, although it does take some concentration. I'm about a third of the way through, and I would definitely recommend it.
Wednesday, 16 January 2013
Sale Bargains
Luckily I hadn't planned to do any writing today - otherwise I might have been very disappointed in myself. I went to see my ghost writing chap this morning (the man I am ghost writing for - there doesn't seem to be an elegant way of expressing that). So I suppose I did some work...But then I hit the shops!
I had heard that there was a 75% off sale in Boots the Chemist, so I headed to our local branch. I bought several Gok Wan nail sets for £3.50 each instead of £14. So far, so good... in fact that might have been enough shopping, especially considering that it was freezing cold today. Most people must have been at home, because the shops were much quieter than usual. I probably should have gone home myself at that point.
But, having scented a bargain, I was not to be deterred. My children are lucky enough to be invited to lots of parties, and since some of the larger Boots stores sell toys, I decided to head to the nearest one in town, to stock up on discount toys for the boys to give to their friends for birthday gifts. (The Gok Wan sets are also for gifts, these ones for the girls to give to their friends. I think nail stuff will make nice birthday presents for girls).
I had some more luck in the Boots in town. I bought a SpongeBob Squarepants alarm clock, to go in the boys' bedroom (they were delighted. I will have to remember to check the time on the alarm before I go to sleep tonight though, as the little one has been threatening to set it for 3am).
I bought a family organiser calendar (always useful). I bought more cut-price gifts (I won't list them all. In case any of the recipients ever read this, look at their gifts and think 'cheapskate'). And then I headed over to Debenhams (they have been sending me emails trying to tempt me to their sale for weeks, but I have resisted - until today). There I bought four bath towels at 70% off, and a half price coat for my eldest daughter (she just came home at school and I couldn't wait for her to try it on - it looks lovely). I got sucked into paying for these things on a new credit card that I didn't want, because the sales assistant lured me in with the promise of an extra 10% off my purchases.
That's it now. I have fully satisfied all my shopping urges for at least the next three months. Debenhams were a bit naughty to push the credit card, I must say - and they gave me a voucher for a free tea or coffee in their restaurant in the next 7 days, which is quite a clear gambit to lure me back again soon to spend even more. But I could afford my purchases - I will pay for them in full when the bill arrives, and then cancel the credit card (this is what I did the last time I had a credit card pushed on me, in Argos, and gave in during a moment of weakness. Usually I say 'No' very firmly, and that's that).
But anyway, I am all shopped out now. I feel that I got some bargains, and I am pleased, but I have no desire to go shopping again in the near future. Which is good - a few years ago I was in the shops an awful lot, and wasted a lot of time that way (and money, I suppose, although I am usually quite strict about only buying things we need).
Tomorrow is my writing day. The kids have been back at school for just over a week now, and although I have been very busy indeed, I have mostly been writing emails and blogs and so on, and organising stuff generally (and revising for my exam, I suppose. That took me until last Thursday).
Now I need to get on with my recovery book. I am aiming to finish that in the next few months, so I am going to have to get into a strict writing routine. And I feel ready for it - I am quite looking forward to it, in fact.
It will be an austere writing regime for me now for the foreseeable future. I'll keep you all posted, but don't worry if this blog is not updated as regularly as usual.
I had heard that there was a 75% off sale in Boots the Chemist, so I headed to our local branch. I bought several Gok Wan nail sets for £3.50 each instead of £14. So far, so good... in fact that might have been enough shopping, especially considering that it was freezing cold today. Most people must have been at home, because the shops were much quieter than usual. I probably should have gone home myself at that point.
But, having scented a bargain, I was not to be deterred. My children are lucky enough to be invited to lots of parties, and since some of the larger Boots stores sell toys, I decided to head to the nearest one in town, to stock up on discount toys for the boys to give to their friends for birthday gifts. (The Gok Wan sets are also for gifts, these ones for the girls to give to their friends. I think nail stuff will make nice birthday presents for girls).
I had some more luck in the Boots in town. I bought a SpongeBob Squarepants alarm clock, to go in the boys' bedroom (they were delighted. I will have to remember to check the time on the alarm before I go to sleep tonight though, as the little one has been threatening to set it for 3am).
I bought a family organiser calendar (always useful). I bought more cut-price gifts (I won't list them all. In case any of the recipients ever read this, look at their gifts and think 'cheapskate'). And then I headed over to Debenhams (they have been sending me emails trying to tempt me to their sale for weeks, but I have resisted - until today). There I bought four bath towels at 70% off, and a half price coat for my eldest daughter (she just came home at school and I couldn't wait for her to try it on - it looks lovely). I got sucked into paying for these things on a new credit card that I didn't want, because the sales assistant lured me in with the promise of an extra 10% off my purchases.
That's it now. I have fully satisfied all my shopping urges for at least the next three months. Debenhams were a bit naughty to push the credit card, I must say - and they gave me a voucher for a free tea or coffee in their restaurant in the next 7 days, which is quite a clear gambit to lure me back again soon to spend even more. But I could afford my purchases - I will pay for them in full when the bill arrives, and then cancel the credit card (this is what I did the last time I had a credit card pushed on me, in Argos, and gave in during a moment of weakness. Usually I say 'No' very firmly, and that's that).
But anyway, I am all shopped out now. I feel that I got some bargains, and I am pleased, but I have no desire to go shopping again in the near future. Which is good - a few years ago I was in the shops an awful lot, and wasted a lot of time that way (and money, I suppose, although I am usually quite strict about only buying things we need).
Tomorrow is my writing day. The kids have been back at school for just over a week now, and although I have been very busy indeed, I have mostly been writing emails and blogs and so on, and organising stuff generally (and revising for my exam, I suppose. That took me until last Thursday).
Now I need to get on with my recovery book. I am aiming to finish that in the next few months, so I am going to have to get into a strict writing routine. And I feel ready for it - I am quite looking forward to it, in fact.
It will be an austere writing regime for me now for the foreseeable future. I'll keep you all posted, but don't worry if this blog is not updated as regularly as usual.
Friday, 11 January 2013
Anti-Psychotic Medication
Never let it be said that I am afraid of the big subjects, or those on which my views might make me unpoular...
A few days ago I posted about disability benefits. I am not sure I expressed myself all that well - I was writing pre-exam (hurrah, it's over now) so I was slightly distracted. One might say obsessed - I do have an obsessive sort of a nature. Everybody I bumped into in the last week or so - casual acquaintances, shop assistants and so on, was informed that I was doing a psychology exam, whether or not they needed to know (none of them did). Friends heard about the exam many times more than once...
I don't think I am self-obsessed (although I am pleased with myself for doing some formal education, it has to be said. I very nearly talked myself into not taking the exam, because I couldn't seem to find the motivation to revise, and I convinced myself that I didn't really need another qualification anyway. I already don't use the ones I have. Then I picked up my 'Selfhood' book by Terry Lynch, and read the next section. It was on self-efficacy - how people with a low sense of selfhood often don't see things through. So I thought - ah, that's what happening, and as a result I pushed myself on to do the thing).
So, not self obsessed (but working on it). I just get something in my mind and find it hard to think about much else, and feel the need to communicate those thoughts. Yesterday morning I resolved not to tell a soul about the exam pending that afternoon (there weren't many people left within a three mile radius who didn't already know anyhow). I went to walk the dog, and the first person I encountered said, 'Good luck for the exam this afternoon!' I mean, I knew the person obviously, but still. One of my new year's resolutions is to keep more of my thoughts to myself - speak more of things that interest other people (their lives, rather than my own).
Anyhow, I did okay (I think) and have now made up my mind to study in a more organised fashion for the next part of the exam in June. I enjoyed the process of revision, to my surprise, once I forced myself to get on with it. I even enjoyed the exam itself (strange, I know) although I found it frustrating that I couldn't answer some of the questions as well as I felt I should have been able to. It all reminded me of being back at school (the exam was held in a local school) but it was so much better. For a start, I could see where I was going (I refused to wear my National Health glasses when I was young, out of pure vanity, so was blind as a bat for many years until I got contact lenses).
About disability benefits in relation to mental health (in case I wasn't sufficiently clear the other day): In my opinion, everyone who needs them should have them, but people should be helped out of the benefit trap once they are ready (and benefits should be held in place as an immediate back up in case they turn out not to have been ready). And nobody should feel they have to take medication so that they continue to be entitled to disability benefits (I know people in this situation. It didn't happen to me - I was on benefits for many years without being on medication).
Anyway. Anti-psychotic medications.
I am on this subject because something started me off about it on Twitter last night. Twitter is good for getting you thinking - and for interacting - although you do have to watch the time when you are on it. I finally switched it off and got on with what I was supposed to have been doing at eleven o'clock last night, which is late for me. I still got to bed by midnight, so fortunately I am able to function today.
Anyway. I am rambling again. I don't have much time left (I am ghost writing a book for a chap and I have to go and see him in a minute) so I will try to present my views about medication in a succinct manner. I want to be clear about this - I don't want to be seen as anti-medication, but I want people to understand where I am coming from with this. It is especially important now that I am acting as a voluntary physical health activist for Rethink Mental Illness. A lot of the physical health problems that the mentally ill suffer are due to the medication. But this doesn't mean that I think medication is all bad. And I don't want people to just stop taking their meds - that would be the worst thing they could do, for all sorts of reasons.
Here goes:
Right. First of all, anti-psychotic drugs don't 'cure' or even treat psychosis. They are major tranquilisers - like valium. They were re-branded as 'anti-psychotics' which makes them sound more efficacious than they are.
That doesn't mean they are bad. It just means that their effect is limited.
People who become psychotic are treated with anti-psychotics (tranquilisers) because nobody likes to see another human being in distress, and sedating people means that they are more manageable and then hopefully more amenable to treatment.
The trouble is that the treatment - at least while the patient is in hospital - consists of anti-psychotics, which don't cure the symptoms, just dampen them down. I believe that in fact no drug could cure these symptoms, because they are not symptoms of a brain disease (as we are led to believe) but symptoms of emotional distress caused by problems within a person's life - basically anxiety, caused by stress caused by money problems or abuse of some kind or all sorts of other issues. Compunded by misuse of drugs or alcohol, very often (a nurse at a day hospital told me recently that every single medical record he has ever seen has cannabis in there right at the start. I don't know whether this is true).
Breakdown is often also to do with a loss of the sense of self. Obviously, this subject is on my mind because of the 'Selfhood' book I am reading, but I started thinking about it long before that - the Newcastle University exhibition last October 'Reassembling the Self' made me re-consider it in a more coherent way. Breakdowns often happen to people who are overly sensitive to the thoughts and opinions of others, and usually this occurs in early adulthood. Medications obviously can't help people find their sense of 'self' or re-assemble themselves, their shattered egos. They can calm people down, but their use after that is very limited.
The medications have serious side effects, as we know, and people tend not to like taking them, so issues of compliance arise. In hospital you become a 'good' patient by taking medication (you eventually realise that it is much better to accept pills than to be forcibly medicated on the ward). The compliance with medication becomes far too important, and continues long-term.
The reason this happens is that when people stop taking their medication, they often suffer mental breakdown. This is painful for mental health professionals to see, and difficult for them to deal with. So continuing the medication is seen as the answer. However, the reason for these breakdowns is not that staying on the medication keeps you well - it is that coming off it makes you ill. This happens because the medications work on dopamine receptors in the brain, switching them off and therefore calming people down. However, the dopamine receptors adapt to the drugs over time and start to work again, at about fifty per cent of their usual function. This is why people become accustomed to the sedative effects of the drug over time, and why symptoms (mainly of anxiety) sometimes start to creep back.
Often, once people are out of hospital, with some of their problems attended to (for example they have accessed disability benefits, which makes their lives easier) they begin to feel better. They want to play their proper part in the world again, and they decide to stop taking their medication, because it has dampened down their spirit and has made them thoroughly overweight. However, this puts them outside the psychiatric system, who all too often won't support them in this endeavour to come off their drugs. And so itstead of stopping slowly, with medical supervision and emotional support from psychiatric care workers, people stop their medication unilaterally.
When the drugs are suddenly stopped, the original dopamine kicks back in, plus the extra fifty per cent capacity. This over-stimulation of the brain causes mental breakdown. What doesn't help is that because the patient has become non-compliant (stopped taking the drug) the psychiatric profession is less than sympathetic, and thinks that the only way to help is to get him/her started on the drugs again. But the drugs don't solve the original problems, of anxiety, poverty, stress and so the cycle continues.
This is such a huge subject. I just want to make another quick point - some people are happy to take their drugs, the drugs work for them. That's good. But I honestly believe that as a matter of human rights anybody who doesn't want to take drugs should not be forced to do so. They should be helped to try to manage without them. I am living proof that such a thing is possible - I was extremely mentally ill, on several occasions, and I have taken no drugs for many years now. There are many others like me, who were given diagnoses of schizophrenia as young people and yet have gone on to lead completely normal lives - they just tend not to advertise the details of their past, for obvious reasons.
There's another point here. Often the thing you believe does you good, does. I don't believe that psychiatric drugs are capable of helping me to live the sort of life I want, which probably goes a long way to explaining why they don't. If you take a drug in good faith, and with trust in the person who has given it to you, it makes a huge difference. (This is something I hope I will remember if I ever get sectioned again - it is also probably something that will prevent this ever happening to me).
The placbo effect is very powerful. Lots of other things (not drugs) help other people with their problems - a long walk, yoga, herbal drinks, a healthy diet. If you believe it is good for your physical and mental health, that helps it work.
One last very quick thing - the issue of compliance with psychiatric drugs has become muddled because mental health problems have been associated with violence. The last time I spoke to a psychiatrist about my views on forcible medication he silenced me by saying that there had been two deaths in the local psychiatric hospital in the previous year. Two murders.
Well, it's a huge subject, it's been on my mind for a while, but I can't go there now - have not got time to even summarise it properly. But it needs sorting out! People who are violent and who commit violent crimes should not be treated in a hospital with drugs - they should be treated in prison, with whatever means may help them. Then the hospital staff could concentrate better on treating those who are ill without fearing for their own lives or safety - which would mean no forcible drugging, which would mean the patients take any drugs willingly, the drugs would do them more good and there would be more space and time to tackle the important issue of how the patients will manage post-hospital. There will be a corresponding increase of trust in the mental health system - it needs it!
I have a lot of sympathy for those who are mentally ill who commit crimes. I have heard people say that they would never have committed these crimes if they were in their right minds. But then, in my opinion, an awful lot of crimes could never have been committed by anyone in their right mind - even if they are not subsequently diagnosed with an illness. There is obviously a link between mental ill health and crime. But by treating criminals in the same hospital as non-criminals the issues are confused, the system becomes increasingly brutal, and everyone suffers as a result.
Apparently, most prisoners have been diagnosed with mental illness of one sort or another, anyway, and they are treated better in prison than in hospital. So I heard, directly from the mother of a man diagnosed with schizophrenia who has been treated in both sorts of institution.
As long as Peter Sutcliffe (the Yorkshire Ripper) is seen to have the same sort of illness - 'Schizophrenia' - as I am supposed to have, there is no hope for me, or for the many others with that awful diagnosis. There has to be a way of differentiating. And in my opinion, committing a criminal offence is crossing the line between being harmless to the general public and being harmful, regardless of the person's state of mind at the time.
Obviously, good sense would have to be applied. There are many people who become aggressive while in hospital, having shown no sign of violence previously - these people are reacting to the fact that their liberty has been suddenly and brutally curtailed, and that they are now living in circumstances that are totally alien to them - where, when they refuse to take a tablet, a 'team' of five or six burly nurses descend, drag them off to a room, pull down their trousers and inject them with a substance they do not wish to imbibe. What would you do in those conditions? How many people would remain truly pacifist, treated in this way? Violence begets violence. If forcible medication was stopped, hospitals would be far more peaceful places, even without the 'weeding out' of those patients who have demonstrated violent tendencies previous to admission.
Psychiatrists know exactly what they are doing to a person when they label him or her 'schizophrenic'. It's not acceptable. This is why many more people are now diagnosed with bi-polar disorder instead - because it is more socially acceptable, even fashionable in some circles. It does not taint lives in the same way.
Anyway, I am getting off the point again. I don't want my diagnosis changed from schizophrenia to bipolar. I do want it acknowledged that I have recovered from the emotional distress I once suffered, that my mental state is now my own concern and nobody elses's, and that I don't need a label to hold me back in life.
As long as recovery is left to go unacknowledged, those who are presently suffering will have no hope for their own futures. I don't think my own sort of recovery is the only 'proper' sort. I don't like taking medication - who knows, maybe I would be even better if I took some! Certainly there is no shame in taking medication of any sort - most people in this country probably take medication of some sort, to ameliorate the effects of mental or psysical pain, or both. Or self medicate. People must do whatever they need to do. People have choices.
I just think the options should be made clear. People who have been mentally - as long as they are not dangerous - should be given the same choices as anyone else about how to lead their lives, including whether or not they wish to take medication, and they should be given help to stop taking it if they wish to do so. Cognitive behavioural therapy has been known to work wonders in this regard.
As for people who present a danger to themselves - suicide risks - that is a whole separate category, and one on which I am not qualified to opinionate. (Is opinionate even a word, or am I getting carried away with myself here?)
I do know that as human beings we all need to learn to be responsible for our own selves - only then will we find a truly worthwhile and meaningful way to live our lives. We are all equally entitled to follow our own paths, and the psychiatric services - even the well-meaning members of those services - need to take a step back. It is their duty to keep everyone properly informed of all the risks and benefits of medication, and then provide support as necessarily. That's all their duty amounts to. The present system is out of kilter, and by depriving people of power over their own lives it is disabling far more of them than necessary. It is such a shame, when it would be better for everyone concerned if those people were healed instead.
Conclusion - no diagnosis, please. No forced medication, please. Full information given about medication in all circumstances. Including the fact that it stops you conceiving. Which is where I started, last night on Twitter, getting all hot under the collar about all this. And where I will stop.
A few days ago I posted about disability benefits. I am not sure I expressed myself all that well - I was writing pre-exam (hurrah, it's over now) so I was slightly distracted. One might say obsessed - I do have an obsessive sort of a nature. Everybody I bumped into in the last week or so - casual acquaintances, shop assistants and so on, was informed that I was doing a psychology exam, whether or not they needed to know (none of them did). Friends heard about the exam many times more than once...
I don't think I am self-obsessed (although I am pleased with myself for doing some formal education, it has to be said. I very nearly talked myself into not taking the exam, because I couldn't seem to find the motivation to revise, and I convinced myself that I didn't really need another qualification anyway. I already don't use the ones I have. Then I picked up my 'Selfhood' book by Terry Lynch, and read the next section. It was on self-efficacy - how people with a low sense of selfhood often don't see things through. So I thought - ah, that's what happening, and as a result I pushed myself on to do the thing).
So, not self obsessed (but working on it). I just get something in my mind and find it hard to think about much else, and feel the need to communicate those thoughts. Yesterday morning I resolved not to tell a soul about the exam pending that afternoon (there weren't many people left within a three mile radius who didn't already know anyhow). I went to walk the dog, and the first person I encountered said, 'Good luck for the exam this afternoon!' I mean, I knew the person obviously, but still. One of my new year's resolutions is to keep more of my thoughts to myself - speak more of things that interest other people (their lives, rather than my own).
Anyhow, I did okay (I think) and have now made up my mind to study in a more organised fashion for the next part of the exam in June. I enjoyed the process of revision, to my surprise, once I forced myself to get on with it. I even enjoyed the exam itself (strange, I know) although I found it frustrating that I couldn't answer some of the questions as well as I felt I should have been able to. It all reminded me of being back at school (the exam was held in a local school) but it was so much better. For a start, I could see where I was going (I refused to wear my National Health glasses when I was young, out of pure vanity, so was blind as a bat for many years until I got contact lenses).
About disability benefits in relation to mental health (in case I wasn't sufficiently clear the other day): In my opinion, everyone who needs them should have them, but people should be helped out of the benefit trap once they are ready (and benefits should be held in place as an immediate back up in case they turn out not to have been ready). And nobody should feel they have to take medication so that they continue to be entitled to disability benefits (I know people in this situation. It didn't happen to me - I was on benefits for many years without being on medication).
Anyway. Anti-psychotic medications.
I am on this subject because something started me off about it on Twitter last night. Twitter is good for getting you thinking - and for interacting - although you do have to watch the time when you are on it. I finally switched it off and got on with what I was supposed to have been doing at eleven o'clock last night, which is late for me. I still got to bed by midnight, so fortunately I am able to function today.
Anyway. I am rambling again. I don't have much time left (I am ghost writing a book for a chap and I have to go and see him in a minute) so I will try to present my views about medication in a succinct manner. I want to be clear about this - I don't want to be seen as anti-medication, but I want people to understand where I am coming from with this. It is especially important now that I am acting as a voluntary physical health activist for Rethink Mental Illness. A lot of the physical health problems that the mentally ill suffer are due to the medication. But this doesn't mean that I think medication is all bad. And I don't want people to just stop taking their meds - that would be the worst thing they could do, for all sorts of reasons.
Here goes:
Right. First of all, anti-psychotic drugs don't 'cure' or even treat psychosis. They are major tranquilisers - like valium. They were re-branded as 'anti-psychotics' which makes them sound more efficacious than they are.
That doesn't mean they are bad. It just means that their effect is limited.
People who become psychotic are treated with anti-psychotics (tranquilisers) because nobody likes to see another human being in distress, and sedating people means that they are more manageable and then hopefully more amenable to treatment.
The trouble is that the treatment - at least while the patient is in hospital - consists of anti-psychotics, which don't cure the symptoms, just dampen them down. I believe that in fact no drug could cure these symptoms, because they are not symptoms of a brain disease (as we are led to believe) but symptoms of emotional distress caused by problems within a person's life - basically anxiety, caused by stress caused by money problems or abuse of some kind or all sorts of other issues. Compunded by misuse of drugs or alcohol, very often (a nurse at a day hospital told me recently that every single medical record he has ever seen has cannabis in there right at the start. I don't know whether this is true).
Breakdown is often also to do with a loss of the sense of self. Obviously, this subject is on my mind because of the 'Selfhood' book I am reading, but I started thinking about it long before that - the Newcastle University exhibition last October 'Reassembling the Self' made me re-consider it in a more coherent way. Breakdowns often happen to people who are overly sensitive to the thoughts and opinions of others, and usually this occurs in early adulthood. Medications obviously can't help people find their sense of 'self' or re-assemble themselves, their shattered egos. They can calm people down, but their use after that is very limited.
The medications have serious side effects, as we know, and people tend not to like taking them, so issues of compliance arise. In hospital you become a 'good' patient by taking medication (you eventually realise that it is much better to accept pills than to be forcibly medicated on the ward). The compliance with medication becomes far too important, and continues long-term.
The reason this happens is that when people stop taking their medication, they often suffer mental breakdown. This is painful for mental health professionals to see, and difficult for them to deal with. So continuing the medication is seen as the answer. However, the reason for these breakdowns is not that staying on the medication keeps you well - it is that coming off it makes you ill. This happens because the medications work on dopamine receptors in the brain, switching them off and therefore calming people down. However, the dopamine receptors adapt to the drugs over time and start to work again, at about fifty per cent of their usual function. This is why people become accustomed to the sedative effects of the drug over time, and why symptoms (mainly of anxiety) sometimes start to creep back.
Often, once people are out of hospital, with some of their problems attended to (for example they have accessed disability benefits, which makes their lives easier) they begin to feel better. They want to play their proper part in the world again, and they decide to stop taking their medication, because it has dampened down their spirit and has made them thoroughly overweight. However, this puts them outside the psychiatric system, who all too often won't support them in this endeavour to come off their drugs. And so itstead of stopping slowly, with medical supervision and emotional support from psychiatric care workers, people stop their medication unilaterally.
When the drugs are suddenly stopped, the original dopamine kicks back in, plus the extra fifty per cent capacity. This over-stimulation of the brain causes mental breakdown. What doesn't help is that because the patient has become non-compliant (stopped taking the drug) the psychiatric profession is less than sympathetic, and thinks that the only way to help is to get him/her started on the drugs again. But the drugs don't solve the original problems, of anxiety, poverty, stress and so the cycle continues.
This is such a huge subject. I just want to make another quick point - some people are happy to take their drugs, the drugs work for them. That's good. But I honestly believe that as a matter of human rights anybody who doesn't want to take drugs should not be forced to do so. They should be helped to try to manage without them. I am living proof that such a thing is possible - I was extremely mentally ill, on several occasions, and I have taken no drugs for many years now. There are many others like me, who were given diagnoses of schizophrenia as young people and yet have gone on to lead completely normal lives - they just tend not to advertise the details of their past, for obvious reasons.
There's another point here. Often the thing you believe does you good, does. I don't believe that psychiatric drugs are capable of helping me to live the sort of life I want, which probably goes a long way to explaining why they don't. If you take a drug in good faith, and with trust in the person who has given it to you, it makes a huge difference. (This is something I hope I will remember if I ever get sectioned again - it is also probably something that will prevent this ever happening to me).
The placbo effect is very powerful. Lots of other things (not drugs) help other people with their problems - a long walk, yoga, herbal drinks, a healthy diet. If you believe it is good for your physical and mental health, that helps it work.
One last very quick thing - the issue of compliance with psychiatric drugs has become muddled because mental health problems have been associated with violence. The last time I spoke to a psychiatrist about my views on forcible medication he silenced me by saying that there had been two deaths in the local psychiatric hospital in the previous year. Two murders.
Well, it's a huge subject, it's been on my mind for a while, but I can't go there now - have not got time to even summarise it properly. But it needs sorting out! People who are violent and who commit violent crimes should not be treated in a hospital with drugs - they should be treated in prison, with whatever means may help them. Then the hospital staff could concentrate better on treating those who are ill without fearing for their own lives or safety - which would mean no forcible drugging, which would mean the patients take any drugs willingly, the drugs would do them more good and there would be more space and time to tackle the important issue of how the patients will manage post-hospital. There will be a corresponding increase of trust in the mental health system - it needs it!
I have a lot of sympathy for those who are mentally ill who commit crimes. I have heard people say that they would never have committed these crimes if they were in their right minds. But then, in my opinion, an awful lot of crimes could never have been committed by anyone in their right mind - even if they are not subsequently diagnosed with an illness. There is obviously a link between mental ill health and crime. But by treating criminals in the same hospital as non-criminals the issues are confused, the system becomes increasingly brutal, and everyone suffers as a result.
Apparently, most prisoners have been diagnosed with mental illness of one sort or another, anyway, and they are treated better in prison than in hospital. So I heard, directly from the mother of a man diagnosed with schizophrenia who has been treated in both sorts of institution.
As long as Peter Sutcliffe (the Yorkshire Ripper) is seen to have the same sort of illness - 'Schizophrenia' - as I am supposed to have, there is no hope for me, or for the many others with that awful diagnosis. There has to be a way of differentiating. And in my opinion, committing a criminal offence is crossing the line between being harmless to the general public and being harmful, regardless of the person's state of mind at the time.
Obviously, good sense would have to be applied. There are many people who become aggressive while in hospital, having shown no sign of violence previously - these people are reacting to the fact that their liberty has been suddenly and brutally curtailed, and that they are now living in circumstances that are totally alien to them - where, when they refuse to take a tablet, a 'team' of five or six burly nurses descend, drag them off to a room, pull down their trousers and inject them with a substance they do not wish to imbibe. What would you do in those conditions? How many people would remain truly pacifist, treated in this way? Violence begets violence. If forcible medication was stopped, hospitals would be far more peaceful places, even without the 'weeding out' of those patients who have demonstrated violent tendencies previous to admission.
Psychiatrists know exactly what they are doing to a person when they label him or her 'schizophrenic'. It's not acceptable. This is why many more people are now diagnosed with bi-polar disorder instead - because it is more socially acceptable, even fashionable in some circles. It does not taint lives in the same way.
Anyway, I am getting off the point again. I don't want my diagnosis changed from schizophrenia to bipolar. I do want it acknowledged that I have recovered from the emotional distress I once suffered, that my mental state is now my own concern and nobody elses's, and that I don't need a label to hold me back in life.
As long as recovery is left to go unacknowledged, those who are presently suffering will have no hope for their own futures. I don't think my own sort of recovery is the only 'proper' sort. I don't like taking medication - who knows, maybe I would be even better if I took some! Certainly there is no shame in taking medication of any sort - most people in this country probably take medication of some sort, to ameliorate the effects of mental or psysical pain, or both. Or self medicate. People must do whatever they need to do. People have choices.
I just think the options should be made clear. People who have been mentally - as long as they are not dangerous - should be given the same choices as anyone else about how to lead their lives, including whether or not they wish to take medication, and they should be given help to stop taking it if they wish to do so. Cognitive behavioural therapy has been known to work wonders in this regard.
As for people who present a danger to themselves - suicide risks - that is a whole separate category, and one on which I am not qualified to opinionate. (Is opinionate even a word, or am I getting carried away with myself here?)
I do know that as human beings we all need to learn to be responsible for our own selves - only then will we find a truly worthwhile and meaningful way to live our lives. We are all equally entitled to follow our own paths, and the psychiatric services - even the well-meaning members of those services - need to take a step back. It is their duty to keep everyone properly informed of all the risks and benefits of medication, and then provide support as necessarily. That's all their duty amounts to. The present system is out of kilter, and by depriving people of power over their own lives it is disabling far more of them than necessary. It is such a shame, when it would be better for everyone concerned if those people were healed instead.
Conclusion - no diagnosis, please. No forced medication, please. Full information given about medication in all circumstances. Including the fact that it stops you conceiving. Which is where I started, last night on Twitter, getting all hot under the collar about all this. And where I will stop.
Tuesday, 8 January 2013
Inspirational Stories
I just found this link to 'I got better' posted by Julie Leonovs on the 'Recovery from Psychiatric Diagnoses' Facebook page. It has stories about recovery - the one I have read so far was wonderful - and you can add your own story. Which I intend to do as soon as possible, which will be at the end of this week.
Here's the link: http://igotbetter.org/stories/ALBrown
Enjoy!
Here's the link: http://igotbetter.org/stories/ALBrown
Enjoy!
Saturday, 5 January 2013
Disability Benefits
I am supposed to be revising for my exam - but found myself on Twitter, and then found myself impassioned, following several threads, offering (unsought after) advice and thinking out loud in public... Then looked at the time and realised that I am not going to get any more revision done tonight. So I thought - I might as well get impassioned on my blog, where I can express myself in whole sentences, not just however many characters Twitter allows (a hundred and sixty something? Pah!) So here I am.
First thing - saw Seaneen Molloy's Twitter feed - she is due to appear on Radio 4 tomorrow morning, speaking about benefits. Apparently (I don't want to spend more time reading around all this just now, so am just writing from memory and perhaps limited understanding) John Bird of the Big Issue criticised the benefits culture, saying that benefits stop people (recovering?). And Seaneen is going to appear on the radio in defence of benefits, saying that they helped her immensely, gave her time to gather herself and to recover. I hope I have that right.
Benefits are a subject that are close to my heart. I am not on them now, but sometimes I wish I were. Although I don't really. Let me explain.
I was on benefits for many years, although outwardly I was well. I kept the fact that I was on benefits a secret, because I was ashamed. I got the benefits because I have a diagnosis of schizophrenia, and the benefits continued despite the fact that I had no symptoms of psychosis and took no medication for many years. However, I did suffer from extreme anxiety. Panic attacks were a regular, often a daily, occurence in my life, and I was terrified of things that to other people would seem almost insignificant. I was a nervous wreck if I had to drive my car on any road that necessitated me going faster than thirty miles an hour. Social occasions would turn me into a blushing, sweating wreck. And by social occasions I include every human interaction you can imagine. I covered all this up pretty well, by the way. But inside I was absolutely paralysed by fear.
Mostly, I was filled with fear because of the fact that I had been told that I was a schizophrenic, and I had been told that I would get worse as I got older, and so apparently another breakdown was always potentially just around the corner, and that could mean that my kids could be taken away, and perhaps I was capable of doing something awful to somebody because I was a schizophrenic. And apart from all that I was very insecure and spent a lot of my time worrying about people not liking me and trying to get them to like me better, and worrying if they didn't...
And I had worked hard for most of my life, as a cleaner and waitress mostly (although I had a law degree) and now I was pretty busy looking after my four kids full time, but what I really wanted was a quiet job in an office somewhere during school hours so I could have some pin money but wouldn't feel guilty about being on benefits, but I knew I wouldn't last long in an office because of my nerves, and so I kept on taking the benefits and feeling guilty and worrying and panicking and blushing and sweating...
God, I was a mess! I deserved that money! But it didn't make me well.
What made me well was starting to write this blog, more than three years ago now. Writing down how I felt day to day and what I did day to day, and what I was about as a person. Which was mostly, at that point in time, just a mother, and a darned good one, even if I do say so myself. Reading back what I had written and realising that I didn't sound all that mad. Reading it again and realising that I didn't have to accept that I was a schizophrenic just because I had been told I was, when there was no evidence at all to back up that fact, and plenty of evidence to the contrary.
Writing my book, and publishing it. Opening up about my history, finding that my many friends still liked me, that nobody I was acquainted with suddenly seemed frightened of me. Realising that my recovery had begun many years before, and might actually be complete now, or one day soon, when I was ready to recognise the fact.
Getting off benefits was the last step. I was getting those benefits for being a schizophrenic, and I think in my heart I always knew that I was not a schizophrenic and that was why I felt guilty for having them. In fact, I have learnt now that there is no such thing as schizophrenia, not as we are supposed to believe in it. That may be too much for some people to handle - but thanks to the Internet I know that I am not the only person to recognise that manifestations of emotional distress do not always equate to mental illness, and/or that when a person is or has been mentally ill it need not be a lifelong condition. Hopefully as time goes on, more people will become aware of all the issues.
But anyway. When I said at the beginning of this post that sometimes I wish I was back on benefits what I mean is that I would not feel guilty if I was on them again. I would welcome them for the peace of mind they would provide. All too often mental health problems are caused by money worries - panic sets in when you realise that you are in extreme danger, that you may not physically survive - I have been there, I know.
But this is the problem with benefits too. I haven't read the John Bird piece, I don't know how he puts his case (but I have read other stuff he has written and I have always found him very insightful. Don't forget, he has been there too. Down and out, I mean). In my opinion, the problem with benefits is that they can stop people working to get better. Because if they do relapse again, they will face the same danger as before - life with no financial support, danger of extinction.
I am not sure of the solution. I think perhaps anyone with a mental health diagnosis should get benefits for life - or until the diagnosis is taken away, because it stands in the way of recovery, stops people from finding decent work and so on. (Especially in the case of 'schizophrenia'. Nobody can really value themselves when they believe that they are 'schizophrenic'. It is such a degrading term.
I think that if people on disability benefits do find work, and then relapse, their benefits should automatically be re-instated to the previous level. I don't say this for myself - I have no intention of relapsing, and believe that I am safe from doing so, since I have finally allayed the anxiety that made me susceptible to nervous breakdown (sorry for repeating myself so often. I do so because nobody can be expected to read all of the back posts on this blog!)
Anyway, I could write more about all this, but this piece has already taken more than half an hour (I should edit it really, but it will have to do as is. I have an exam to take on Thursday!)
There are other things I would like to write about too. I promised to do some physical health activist work for Rethink a month or so ago, and haven't got started yet. They just sent me an email about obesity and diabetes being linked to 'schizophrenia' (it's the medication, stupid). They also wrote about a 'schizophrenic' woman who didn't want to have a hysterectomy because she believed she didn't have cancer. The lawyer appointed to act in her best interests also recommended that she shouldn't have the operation because there is quite a high risk that she will die in surgery (due to other factors, like her weight). Shockingly, the judge decided that she should have the op, because her three adult children want her to have the best possible chance to live. I was talking to Paul about this last night, and he couldn't get why I was so outraged - 'She's obviously delusional' he said.
Yes, but if my husband was found to have a brain tumour and chose not to have the operation, nobody would question his choice. Because he is not 'schizophrenic' (even though the brain tumour might have caused him to lose his power of reasoning). His choice would be respected. He would have rights. Even if I and our children wanted him to have the operation, he would not be forced to do so by any court. Because he is a human being, not a 'schizophrenic'.
And it is not just the woman's rights which have been disregarded. The lawyer appointed to act in this woman's best interests was overruled by the judge in this case. Why? Because 'Schizophrenics' (even those with lawyers to look after them) are supposed to be less than human, and they are treated as such. Therefore what her adult children want for her - the operation - is what will happen, regardless of what she wants and regardless of the risk (deemed too high by an independent lawyer) that she may die in surgery. It's wrong. It just is.
But who's going to listen to me? After all, I'm a schizophrenic. Aren't I?
It's late, and I must go now. Goodnight.
First thing - saw Seaneen Molloy's Twitter feed - she is due to appear on Radio 4 tomorrow morning, speaking about benefits. Apparently (I don't want to spend more time reading around all this just now, so am just writing from memory and perhaps limited understanding) John Bird of the Big Issue criticised the benefits culture, saying that benefits stop people (recovering?). And Seaneen is going to appear on the radio in defence of benefits, saying that they helped her immensely, gave her time to gather herself and to recover. I hope I have that right.
Benefits are a subject that are close to my heart. I am not on them now, but sometimes I wish I were. Although I don't really. Let me explain.
I was on benefits for many years, although outwardly I was well. I kept the fact that I was on benefits a secret, because I was ashamed. I got the benefits because I have a diagnosis of schizophrenia, and the benefits continued despite the fact that I had no symptoms of psychosis and took no medication for many years. However, I did suffer from extreme anxiety. Panic attacks were a regular, often a daily, occurence in my life, and I was terrified of things that to other people would seem almost insignificant. I was a nervous wreck if I had to drive my car on any road that necessitated me going faster than thirty miles an hour. Social occasions would turn me into a blushing, sweating wreck. And by social occasions I include every human interaction you can imagine. I covered all this up pretty well, by the way. But inside I was absolutely paralysed by fear.
Mostly, I was filled with fear because of the fact that I had been told that I was a schizophrenic, and I had been told that I would get worse as I got older, and so apparently another breakdown was always potentially just around the corner, and that could mean that my kids could be taken away, and perhaps I was capable of doing something awful to somebody because I was a schizophrenic. And apart from all that I was very insecure and spent a lot of my time worrying about people not liking me and trying to get them to like me better, and worrying if they didn't...
And I had worked hard for most of my life, as a cleaner and waitress mostly (although I had a law degree) and now I was pretty busy looking after my four kids full time, but what I really wanted was a quiet job in an office somewhere during school hours so I could have some pin money but wouldn't feel guilty about being on benefits, but I knew I wouldn't last long in an office because of my nerves, and so I kept on taking the benefits and feeling guilty and worrying and panicking and blushing and sweating...
God, I was a mess! I deserved that money! But it didn't make me well.
What made me well was starting to write this blog, more than three years ago now. Writing down how I felt day to day and what I did day to day, and what I was about as a person. Which was mostly, at that point in time, just a mother, and a darned good one, even if I do say so myself. Reading back what I had written and realising that I didn't sound all that mad. Reading it again and realising that I didn't have to accept that I was a schizophrenic just because I had been told I was, when there was no evidence at all to back up that fact, and plenty of evidence to the contrary.
Writing my book, and publishing it. Opening up about my history, finding that my many friends still liked me, that nobody I was acquainted with suddenly seemed frightened of me. Realising that my recovery had begun many years before, and might actually be complete now, or one day soon, when I was ready to recognise the fact.
Getting off benefits was the last step. I was getting those benefits for being a schizophrenic, and I think in my heart I always knew that I was not a schizophrenic and that was why I felt guilty for having them. In fact, I have learnt now that there is no such thing as schizophrenia, not as we are supposed to believe in it. That may be too much for some people to handle - but thanks to the Internet I know that I am not the only person to recognise that manifestations of emotional distress do not always equate to mental illness, and/or that when a person is or has been mentally ill it need not be a lifelong condition. Hopefully as time goes on, more people will become aware of all the issues.
But anyway. When I said at the beginning of this post that sometimes I wish I was back on benefits what I mean is that I would not feel guilty if I was on them again. I would welcome them for the peace of mind they would provide. All too often mental health problems are caused by money worries - panic sets in when you realise that you are in extreme danger, that you may not physically survive - I have been there, I know.
But this is the problem with benefits too. I haven't read the John Bird piece, I don't know how he puts his case (but I have read other stuff he has written and I have always found him very insightful. Don't forget, he has been there too. Down and out, I mean). In my opinion, the problem with benefits is that they can stop people working to get better. Because if they do relapse again, they will face the same danger as before - life with no financial support, danger of extinction.
I am not sure of the solution. I think perhaps anyone with a mental health diagnosis should get benefits for life - or until the diagnosis is taken away, because it stands in the way of recovery, stops people from finding decent work and so on. (Especially in the case of 'schizophrenia'. Nobody can really value themselves when they believe that they are 'schizophrenic'. It is such a degrading term.
I think that if people on disability benefits do find work, and then relapse, their benefits should automatically be re-instated to the previous level. I don't say this for myself - I have no intention of relapsing, and believe that I am safe from doing so, since I have finally allayed the anxiety that made me susceptible to nervous breakdown (sorry for repeating myself so often. I do so because nobody can be expected to read all of the back posts on this blog!)
Anyway, I could write more about all this, but this piece has already taken more than half an hour (I should edit it really, but it will have to do as is. I have an exam to take on Thursday!)
There are other things I would like to write about too. I promised to do some physical health activist work for Rethink a month or so ago, and haven't got started yet. They just sent me an email about obesity and diabetes being linked to 'schizophrenia' (it's the medication, stupid). They also wrote about a 'schizophrenic' woman who didn't want to have a hysterectomy because she believed she didn't have cancer. The lawyer appointed to act in her best interests also recommended that she shouldn't have the operation because there is quite a high risk that she will die in surgery (due to other factors, like her weight). Shockingly, the judge decided that she should have the op, because her three adult children want her to have the best possible chance to live. I was talking to Paul about this last night, and he couldn't get why I was so outraged - 'She's obviously delusional' he said.
Yes, but if my husband was found to have a brain tumour and chose not to have the operation, nobody would question his choice. Because he is not 'schizophrenic' (even though the brain tumour might have caused him to lose his power of reasoning). His choice would be respected. He would have rights. Even if I and our children wanted him to have the operation, he would not be forced to do so by any court. Because he is a human being, not a 'schizophrenic'.
And it is not just the woman's rights which have been disregarded. The lawyer appointed to act in this woman's best interests was overruled by the judge in this case. Why? Because 'Schizophrenics' (even those with lawyers to look after them) are supposed to be less than human, and they are treated as such. Therefore what her adult children want for her - the operation - is what will happen, regardless of what she wants and regardless of the risk (deemed too high by an independent lawyer) that she may die in surgery. It's wrong. It just is.
But who's going to listen to me? After all, I'm a schizophrenic. Aren't I?
It's late, and I must go now. Goodnight.
Subscribe to:
Posts (Atom)