Friday, 11 December 2009

Schizophrenia re-examined

It is quite odd - last night I failed to write a blog entry for the first time since I started this. I think because - taking myself by surprise - I talked myself through the illness to the point where I decided I might not have it at all, I kind of felt there wasn't much left to say.

However, I feel it would be a pity to stop blogging - I have been enjoying it so much. Apart from anything else, it is a regular writing routine, which I badly needed. Last night I was feeling quite poorly - I had been far too busy during the day, and the cold that I thought I had shrugged off earlier in the week crept back and snaffled me up. But I still missed my tapping session.

Also, there is a lot left to say, in particular about the glaring injustices present in the mental health system. And the lack of information available out there. For example, I was never told that schizophrenia is liable to burn itself out by the age of fifty. I was expressly told the opposite, by my notorious 'Team' - that I would just go on getting worse and worse as I grew older. My outlook was correspondingly bleak.

It was only because a friend of mine, a psychiatric nurse who married one of her former patients, shared this news of 'Schizophrenic Burnout' with me, that I was aware of it. In a stroke my attitude was changed - to fear of what would happen to me as I got older, to the immense relief that came with knowing that whatever happens now, I will be well in the future. What a revelation - so why was this the first I had heard of it? Even if it isn't true (and my friend certainly believes it is - she only mentioned it in passing, and was surprised I hadn't known it already) it makes me feel better. Which raises the question of why was I given such a gloomy prognosis in the first place? Surely rather than effectively informing me that life as I knew it was over, the psychiatrists coould have admitted that the prognosis was uncertain, and perhaps even said that there was some hope that I would go on to live a full and happy life. I might not then have lost the best part of my twenties in an extremely scared and vegetative state, living in fear of myself as a schizophrenic, paralysed by the knowledge that things could only get worse.

I find that when you first enter a mental hospital, the most striking aspect of this most alien of places is the uniformity of the patients' condition. Of course some of them are floridly ill - many others are withdrawn, or havily sedated. But what I am referring to is the physical condition - these people are almost all thin, shabbily dressed, and chain-smoking cigarettes.

Their thinness is soon remedied - unfortunately, in fact it is over-corrected. The medication takes care of that. The most common side-effect of psychiatric drugs is to increase the appetite. Obviously, because patients become extremely hungry, they rapidly put on weight. Then, because of the next most common side-effect of the drugs - over-sedation, they find it difficult to shift the weight, and so the cycle continues. The end result is an assortment of overweight, sluggish, demoralised and rather depressed individuals, who are however - hurrah! - not floridly mentally ill. These individuals are then sent out into the world to fare as best as they are able.

So, their extreme skinniness has been effectively remedied. Smoking is not discouraged in mental hospitals however - in fact mental hospitals, along with prisons, are virtually the only exception to the new laws against smoking in public places. I find this very odd - the medical profession know better than anyone the risks of smoking, so surely they should actively campaign to stop smoking in all hospitals? Why treat the mentally ill differently from anyone else in this respect? Does their health matter less? Or is there some fear that without the stress relief provided by their cigarettes mental health patients will become uncontrollable?

I have given some thought to this matter, and I still cannot fathom it. I speak as an ex-smoker, one who is aware that smoking is bad for mental and physical health. I have stopped and started smoking on several occasions over the years, and it is one of the clearest indicators as to my state of mind. I have often warned my husband that if I should start smoking again he should immediately contact the mental health services.

I am sure that this ties in with my third point, about the fact that patients are shabbily dressed. What I am getting at here is not of course their attire, but their poverty, and thus their place in society. The mentally ill, almost to a man, are down on their luck, destitute and thus desperate. I have seen this time and time again in the people I have been hospitalised with over the years - and of course in myself.

Having said this, I am not quite sure what can be done about it. I just feel that something should be done - why should a lack of money equate to such suffering? An effort to assimilate people back into society as quickly as possible, preferably through the workplace, would be ideal. But I know from my experience that I was laid so low after hospital that I would have been quite useless in the workplace. This is why there are so rehabilation centres, or half way houses, like the day centre that I attended for years after my second breakdown.

But these places set their standards far too low - no-one is expected to do anything, or think anything. Televisions are on all day, and most of the patients sit around smoking. It is certainly not the right atmosphere to foster motivation in anyone.

By contrast, those people who can afford private treatment fare much better. There is far less stigma associated with a stay at the Priory - indeed, such a stay might be seen as a badge of honour, or a status symbol. And I am sure that at the Priory, and other such hospitals, patients are involved as early as possible in programmes to attempt to educate them about playing a part in their own recovery, and that they are not just allowed to sit around smoking and watching TV all day. This is all pure guesswork, and I am not the betting type, but if I was I would wager that in the Priory nobody is allowed to smoke indoors - because the issue is treated with the gravitas befitting a hospital.

Enough for now. I have no idea how long I have been writing for - I am glad to be back on track though.

Wednesday, 9 December 2009

Christmas is near; are you stressed?

We watched a Nativity play this morning, and this evening we have been out at another carol concert - so lovely, all these opportunities to revel in the amazing children we have been given. I really feel so proud of them all, and so priveleged to be their mother.

I am looking forward to Christmas - although I feel detatched from the religious aspect, I enjoyed singing at the last carol concert I attended, in church at the weekend, and I was surprised to enjoy it.

Having children means being given the chance to relive your own youth and improve on it. I don't mean by living their lives vicariously, but by getting the opportunity to go to theme parks, fairs, pantomimes; all those leisure activities that would otherwise be lost in the mists of time.

It may sound strange, but being a mother is such a healing experience for me. There are occasions when I become stressed, but mostly I am too grateful for the chance to be a mother to risk getting it wrong.

This is all for tonight - a paean of gratitude.

Tuesday, 8 December 2009

Forecasting the Future

As far as yesterday's blog went, I think I am going to try thinking of myself as not being schizophrenic for a while, and seeing how the change of attitude affects my life. I realise that when the diagnosis was made the doctors thought there was a dead cert of them being right - I had all the symptoms, I broke down on more than one occasion, I must have fitted the model that they base their diagnoses on.

But the trouble with the diagnosis is that it is one that is meant to last for life. I was told that I had an incurable illness in a pronounced form and that I was going to get worse over the years - effectively, that, 'There is no hope for you lady, so you might as well give up now'. And I did give up, for a number of years. It is a bit like the old witch doctor routine. Witch doctors scared people to death; they got into the pysche of their victims and made them believe they were going to die, and so they obligingly did.

Well, it is finally beginning to occur to me that no one can forecast the future. I am not living the life those doctors forecast for me - thank God. And I really should stop myself thinking that I come under the umbrella term that they tried to tar me with - although I am scared to stand out against it, because that would be termed non-compliance and I could be said therefore to have no insight into my condition, and so on, culminating in the worst-case scenario that I end up sectioned - I know, I have an over-active imagination, but I also have a point).

I do have many failings as a human being. I often wish I was not so nervous. I wish I could communicate more effectively in spoken conversation. I get very stressed at times. I have many other shortcomings. However, by and large these things are improving as I get older - as is to be expected.

In my case, the events of my childhood were, I believe, the main cause of my trauma. Now I am older, calmer and more in control of my life. Also, now I am a parent myself and so I have gained some understanding of why things might have been so difficult for my parents in the light of their own shortcomings. I am on the path to forgiveness of the wrongs that were done to me when I was young, and during that journey some of my own problems are becoming fixed. There are many sources of help out there, once you start looking - Al Anon, for example have a wonderful spiritual and non-judgemental outlook on how to salve the wounds caused by our upbringings.

I feel that I am healing gradually, but I am aware that just as doctors cannot predict the future, neither can I. It is perfectly possible that if life were to place another trauma in my path, I might be unable to cope and could retreat into psychosis again. I do not wish to become complacent. But neither do I want to build a wall in the path of any progress I might make - to say to myself - you can never be completely well. That would be stupid - and yet that is exactly what I have been doing for years, by agreeing that I am a schizophrenic.

In some ways mental health treatment has not moved forward for centuries. We have gone from a complete lack of understanding, and completely inhumane treatment - lobotomies for instance, to the position we are in now, where individuals are still denied recovery, but by more insidious means.

The thing I find most shocking - and most undercover - is the chemical sterilisation of women. Most people today are horrified to learn that not too long ago, in this country, mentally ill women were subject to forcible sterilisation - as were single mothers, and other 'social deviants'. However, this horror is still alive today - although under cover. Many years ago, when I expressly asked my 'team' of psychiatrists, social workers, psychologists, mental health nurses and so on, whether my medication would stop me conceiving, I was categorically told that it would not.

I was engaged to be married. I was well, but compliant with the fact that I had been told that I should stay on a low dose of medication, for prophylactic purposes -ie to prevent the likelihood of my becoming ill again. I accepted that this medication was safe, and had very few side effects, because that is what I was told by the doctors - who I thought were trustworthy, honourable people with my best interests at heart.

I later found out that the drugs I was on - like many psychiatric drugs - had caused levels of a particular hormone, prolactin, to be 'sky high' as the GP termed it, in my system, and that the presence of this hormone in this concentration definitely prevented ovulation. I refuse to believe that the 'Team' were ignorant on this matter - to me it is obvious that they have full knowledge of the effects of these medications, over and above anything a layman could be expected to know or discover. I only found out by pure luck, but the information was in the public domain. I happened to be reading a health and fitness magazine and a tiny paragraph mentioned that some medications can prevent conception, and I picked up on the possibility that mine was one of those drugs, then went to my GP to check. He looked at me askance when I mentioned that I thought my prolactin levels might be high 'Your what?', but he did fill out the forms to send me to the hospital for a hormone profile test.

I still remember the look on his face when I went to see him to get the results of those blood tests, and he told me, 'Your prolactin levels are sky high'. It was a look of something almost approaching respect. And from there he referred me to see an endocrinologist, and under her supervision I was weaned off the drugs. It strikes me now that had I not read that magazine article, my life now would be hardly recognisable - and four of the most wonderful, marvellous people on this planet would not exist.

So, in my opinion; in my experience, sterilisation of mentally ill women still occurs, but by underhand means. This is a real tragedy, because many of the women I met over the years in hospital and in so-called 'rehabilitation centres' longed to have children, and would have made wonderful mothers. I believe their illness was in some cases caused, in others compounded, by their childlessness.

As a mother myself, and someone who so nearly might not have been, I recognise how important, how awfully important, this issue is. I do not believe psychiatrists would willingly inflict such misery on women if they recognised them as people - instead of as patients, dangerous ones who must be controlled.

Monday, 7 December 2009

Is there any such thing as Schizophrenia?

I was thinking today about how to explain the incident I hinted at yesterday, to do with something that happened in hospital when I was nineteen. I decided that I can't go through all that here. It will have to be enough to say that it was assumed that I was accusing somebody of doing something when I wasn't intending to say that at all, and I put the record straight at the earliest opportunity, and luckily no harm was done.

I was also thinking that I should probably ask to look at details of the records kept when I was in hospital - but I haven't the energy for it. Whatever has been said about me is done now, and I have very little hope of changing any inaccuracies. The best I can do for myself is make sure I stay out of hospital henceforth.

I think a laissez faire attitude can be very useful in life, essential at times. In practical terms, when things go wrong you have to move on. You cannot afford to linger on thoughts of the past, or fret about things that can't be changed.

I am aware that my writing is rather obscure today. I am just really, really tired. It is the time of year when the children have to be all over the place several times a week for performances of this and that, and it takes its toll on all of us. It is wonderful in a lot of ways - I am so proud of them all, and I love watching the carol concerts and so on - but it is exhausting.

I had all sorts of scribbled notes about what I was going to write in this blog today, but I am going to shelve them for now. Luckily, nobody will complain - the beauty of blogging is the complete control that it affords the author.

What I have been considering today, is what a shame it is that I feel so hidebound by my diagnosis. It stops me doing things that I would otherwise enjoy - like helping more at the schools - for fear of what people would think of me being close to their kids if they knew about my schizophrenia.

As far as I know the diagnosis is not apparent to those who know me, and my kids are well balanced and properly behaved. I know that I pose no risk to anybody. But I do worry about what people would think even of letting their children come to play with mine after school if I revealed my mental health history. There would be a lot of nervous parents out there.

The psychiatrist who I saw after my last three children were born - who kept an eye on me for signs of disturbance - ended up being quite convinced of my normality, and even offered, completely of his own volition, to get my diagnosis reviewed, when I told him how it bothered me.

He spoke with 'The Team' and came back with a completely changed attitude - almost as if he thought that I had tried to pull the wool over his eyes and the others had luckily set him straight. He made it clear that the diagnosis was founded on very firm foundations and there was no question of changing it.

In some ways I don't mind - my life at the moment is generally satisfactory. But I do feel hidebound and typecast by the diagnosis - sometimes I wish that I had never accepted its validity. After all, I lead a very busy life, and I function well without medication, and have done so for many years.

So why should I accept that I 'am' something so awful sounding as 'Schizophrenic' just because that is what I have been told? By the same people who told me that the prognosis was very bad, that I would gradually deteriorate, that in other words I might as well give up all hope of a normal life. By the same people who told me that the medication I was on twelve years ago would in no way stop me conceiving, when the truth was so very different. Why did I ever trust these people?

There is no test for schizophrenia. It seems to me to be possible that I suffered three breakdowns because events in my childhood and early adult life led me to feel under such overwhelming pressure that I could no longer cope with reality, and so I retreated from that reality. And that by dint of a combination of luck and determination I am now in a place in my life where I am much more able to cope and so all memories and thoughts of those breakdowns can be consigned to the past and forgotten.

I can thus ignore the medics if I choose - I have no need of them for drugs or therapy, and I don't really need their permission to stand up and say, 'Hey, I am not schizophrenic just because you say I am'.

The reality is more complex though. I have been labelled, and for many years I have accepted that label. To shrug it off now I would need a lot of strength, and a pile of self-conviction.

I have always had a lot of faith in the medical profession - and felt a lot of awe for doctors in particular - but as I get older I come to realise that they are only humans as fallible as the rest of us.

I have read that nowadays psychiatrists are much less ready to diagnose mental illnesses, or to divulge diagnoses if they do make them. Largely because they realise what great margins for error there are, and because they are starting to see what implications these diagnoses have on individuals. Tell somebody they are a schizophrenic and watch them flounder - it certainly worked for me.

So if they are changing their attitudes to diagnosis now, I wonder why they are so loathe to say that they may have been wrong in the past? Could it possibly be professional pride? Is there a chance that the aim of some these psychiatrists is not solely to mend minds, but also to try to keep their patients in their proper places, to make themselves seem even loftier in comparison? Psychiatrists surely know even better than most how thin is the line we all tread. What it comes down to surely, is that the only person who is able to free me is me - if I am only willing to do so.

This really is heretical thought for me. Also, it is rather rambling. But it's fun to be a rebel for a change. Interesting how this blog keeps leading me in directions that I had no notion of exploring. It is quite a revelation.

Sunday, 6 December 2009

Family Life and Schizophrenia

I had a thought earlier today - maybe one day my kids can read this blog, and save me long, meandering and probably confusing explanations about my mental health history. Although I doubt if they will ever have the time to read it all, if I carry on at the pace I have been writing. It would make sense in a lot of ways though - I write much more clearly than I speak, which is a shame because I would love to be able to communicate more effectively in person.

I think 'Less is more' is a definite necessity in conversation, but unfortunately I have veered a long way away from that in recent years. I have gone from being a person who was so shy that I was permanently tongue tied, to someone who uses speech to ward off shyness. In other words, I talk more than I listen, and in a strange way it helps to calm my nerves. Although I know this is wrong, inadvertently I keep doing it. Anyway, on the page, it doesn't matter so much - nobody is forced to read this stuff.

As far as the children go, I have been working on them for years. They know my views on binge drinking (an alcoholic mother has made me quite staid and I rarely drink at all, but I really do hate the way that teenagers, and even some Mums I know, see having a hangover as a badge of honour. No, it means that you poisoned your body and it is struggling to right itself).

They know my views on smoking (I just loved the quote from Lorraine Kelly in the Sunday Times today about how she doesn't smoke because it gives you a mouth like a bum, yellow skin and hair like a brillo pad. That should prompt a few ladies to stop.)

Ditto tattoos. They may look pretty to begin with, but they all turn green in the end. I prefer the ones that you stick on and peel off. I have some really nice sparkly ones, and although to me they are very obviously not real tattoos, a surprising number of people don't seem to realise this.

The subject of mental health has not yet come up, but when it does I will endeavour to foster in my kids a good level of understanding and fairness on the subject, illustrated eventually by my own experience (when I feel they can cope). So hopefully this blog will prove useful.

We haven't done much today - the boys are still quite coldy. I did take the girls out for an hour; we had afternoon tea at a posh hotel. It is a treat I have been promising them since the summer holidays, and since my other half is still nursing a cold, it suited him fine to stay home with the boys. I was a good wifey, and prepared their dinner before we left.

I am so glad to be half of a couple, speaking as a mother. I honestly don't know how people manage to go it alone. Often by the time the weekend is over I feel like I've lost touch with one or more of the kids, because their Dad looks after one or more of them while I spend more time with the one or more of the others.

Sometimes I feel this is necessary so I can rest a bit, or sometimes we see that one of the kids needs some one-to-one, or somebody has some place they need to be, so we have to do things separately. I realise that we have more children than the average family, but it still must be so hard for single mothers to be everything to everybody all the time.

I am really lucky - I know I say that I am lucky a lot, I can still hardly believe my good fortune - that my husband is so good. As a father, and as a man. Sometimes I am moody to the extreme - maybe it is my illness, maybe it is just the pressures of life, but he puts up with extremely bad behavior from me sometimes. And he still loves me! It is amazing.

A psychologist might day that I am testing him because I had so little security as a child i.e. I behave badly to try to force him away, so that I can be sure he really loves me when he stays, but if this is true it is not conscious. I am making a definite effort to be better. Writing helps, and writing daily helps a lot - I think it channels my nervous energy.

I have been clicking on the 'next blog' button, and then spending far too long reading reams of stuff. Apparently it is tailored to what you write about, so the subject of my blog must be quite unclear - I started off getting a lot of stuff on spirituality, some Portugese blogs (I suppose schizophrenia might be picked up as a Spanish sort of word by a computer), then I got some mental health stuff, and now when I hit 'next blog' it takes me to some lovely family blogs.

However, I don't want to veer to far from my mission to inform the world of how I think 'schizophrenics' might be helped to function normally, and to be seen to do so.

So, my insight today is for those lucky people amoung you who have never seen the inside of a mental hospital. I hope you never do - they are deeply horrid, inhumane places, certainly from a patient's perspective.

I have met some lovely nurses, I have some very good friends who are nurses, and my mother was one. She may be an alcoholic but she is one of the loveliest people I have ever met in many ways. That is another story.

But a lot of the nurses who work in mental hospitals are hopelessly jaded (I do realise that it must be a very difficult job). And some of them, I fear, have little understanding of the actualities of mental illness - I don't mean from a treatment perspective, but from a much more personal one.

For example, although when I was hospitalised I was extremely ill (I was in for three months on three separate occasions) I still had moments of lucididy. In fact I had long periods of lucidity, as time went on. I can still remember things that were said to me, who was kind or unkind, who talked about me as though I was simply not there. Some of the nurses seemed to work from the assumption someone in the initial throes of psychosis must be so crazy that there was not an ounce of understanding present. But is not the case - or rather, was not true in my case.

Also, the fact that I was mentally ill did not make me a liar. I don't want to go on about this too much at the moment, but I was sexually assualted by a male nurse in hospital - this was when I had just given birth to my first child, and suffered post-pueral psychosis. This man, up to that point, had seemed to be kind and understanding. One day, for no apparent reason, he did something really strange. I was in the dining room. I had queued up to put my lunch on my tray, and was reaching for the salt - this nurse was standing by the condiments and cutlery, at the end of the counter. He took my hand and put in on his trousers, over his penis, which was hard.

How weird is that? I still have no idea why he did it - maybe he was proud of his erection and wanted me to know about it. (If he should ever read this, I would like to note for the record, just so he knows, that it was neither long nor wide, and so he has nothing to be so pleased with himself about. I am joking, but the horror in all this is that he may have done the same to other women, in fact may still be doing it, or worse.)

Anyway, I was totally freaked out. I burst into tears. I think that must have been the shock, and because of a sense of betrayal of trust. I sat down heavily at a nearby table and sobbed for some time. He came over, asking what was wrong. Then (I know this is crazy, but I was a patient for good reason, and also I was angry but I am not violent so I suppose I felt that this was the only form of retaliation at my disposal) I threw the snotty napkin that I had violently blown my nose into, in the nurse's face.

At this point, I had to return to my room. Another nurse, a female one, came to talk to me about what had happened. I told her exactly what he had done. And she said 'But he is one of our best nurses'. She was totally in denial, totally disregarded what I told her. I don't know if she spoke to him or not. I do know that at my next meeting with the psychiatrist, the male nurse who had sexually assualted me was assigned to be my key worker. It felt as though a point was being made - we don't believe this man hurt you in any way, so he is now going to be put really close to you.

I was terrifed every time that man was on night duty. I had not felt particularly traumatised by the assault itself - I felt like he was a silly little man trying to show off - but I felt very threatened by the fact that it had happened in a punlic environment, and I had been disbelieved. What would he now be able to do to me in private? There were only two nurses on the ward at night time, and I was heavily sedated - I took the little white pill that knocked me out at night in the most extreme state of fear. I find it hard to describe how I felt.

But I never lost sight of the fact that there was much more at stake. From the minute I gave birth I adored my baby beyond belief. I think my devotion to her was one of the factors in my breakdown.

I had a very quick labour, and was given pethidine within an hour of the birth - it affected me adversely. Then I quickly became stressed and tired. My daughter had been born a month early and was taken into the neo-natal intensive care unit. I was trying to breastfeed but couldn't get to grips with it. I started to lose the plot. When I was told that the consultants thought she might have Down's Syndrome, and that they were sending off for chromosome tests the results of which would be available in three days' time, I completely lost it. None of this is an excuse, just my attempt at an explanation for the breakdown.

Anyway, when I was in hospital, even when I was really ill, I was always aware that I needed to get a grip on reality, to become sane and capable as soon as possible, in order to get my baby back. I knew that there was a very real risk that I would not be deemed capable of looking after her. So I really tried my hardest to become as well as I could, despite everything.

I was devastated when my own sister refused to discuss the fact that I had been assualted. She took the same tack as the female nurse who I had first spoken to - straight denial. I couldn't understand it. My husband - not yet my husband, said that he believed me but that he couldn't so anything about it. Yet he still looked the guy in the eye and nodded civilly when they crossed paths.

I can only suppose now that those concerned assumed that because I was deranged I had imagined the assault, or lied about it. But I have never been a liar. Although there was another incident at the same hospital when I was only nineteen, on the occasion of my first breakdown - well, I will write more about that tomorrow.

As for the nurse himself - I hope to God that he actually was, or is, a good nurse, and that what he did was an aberration. I still don't understand it. But I do realise that far worse things than that have happened to far better people than me. It is just the fear I felt, the fear of him and the fear that I would lose any chance to prove my right to my daughter if I insisted on pursuing my accusations. I find that hard to forgive. And although I don't intend to stick my neck out after all these years by going to the police with a statement, if I ever heard that this nurse had been accused of sexual assault by another patient I would be the first on the witness stand to back them up, no matter at what personal cost.

Gosh - I really didn't know that I was going to blurt all that out. Now my kids won't be able to read this blog until they are at least sixteen! I actually meant to write a bit about the state of mental health hospitals, and the sort of people who generally find themselves incarcerated in them.

That will have to wait until tomorrow now.

Saturday, 5 December 2009

An apology

I have to say sorry for going on at such length this morning. I hope I haven't bored any readers to death. Sometimes I fail to realise that the things that interest me have no relevance to anyone else's life... Though I still have hopes that some of my thoughts will chime with other peoples' sometimes.

I am far too analytical about stuff - I have a lot to learn about life in general and relationships in particular. In my defence, I really did have very little guidance when I was a child - then I was ill for a number of years, so in a way I am still growing up. But very belatedly.

And I know I said I was only going to blog once a day. But everyone else is asleep, so it can't really matter. I am not taking my time away from anybody else who needs me right now. Even my husband has retired to bed with his cold.

I neglected the children this morning, promising to take them to the shops, then getting bogged down by my blog. I did enjoy the writing though, and as Mummy I need some me-time to be able to give my best to the kids the rest of the time. Or so all those parenting magazine articles tell me.

I took the children to Pizza Hut instead, so everybody was happy in the end. Well, almost everybody - the food was not great, and the five year old actually ate none of his fish meal. All he had was loads of tortilla crisps from the salad bar, then he guzzled loads of Diet Coke, then complained of a tummy ache. Reminds me why I usually avoid eating out.

I don't usually neglect the children - normally I am a rather smothering mother. Lucky for them that I can spread myself between them - if I had just one child the poor thing would be overwhelmed by me. None of my kids has ever been to nursery - mainly because I haven't worked outside the home so I haven't needed to send them. Also because I have issues with trust. But mainly because I want them for myself - my lovely little people, who make me laugh and listen to my opinions and who need me to plait their hair or tie their shoelaces. Why would I want to pay someone else and let that person have all my joy?

I do let them go to pre-school of course, once they are eligible for their early learning grants. And the three older ones are all at school now, and all loving it. I still have my baby at home - and I am hoping that by the time he goes to school I wil be busy enough with my writing career not to mind letting him go. I am definitely not having any more - though I am one of those people that goes all gooey when they see a newborn.

I realise how very fortunate I am to have this family, and to be where I am in my life today. I do count my blessings constantly, and I apologise again for todays earlier rant. It is just that I still have a long way to go on the road to becoming a totally secure person. I was insecure for so long, it is still difficult to adjust to the realisation that I no longer have to worry about small upsets in my life, now that almost all of it is on track.

Does that make sense?

Anyway, the baby is shouting for me, 'Mama! Mama! Muuuum! Muuuuuuuuum!' Gotta go.

More musings on Schizophrenia

I want to divulge a little bit more about my background, and why I think I succumbed to psychosis. In my opinion most children have a sense of their own powerlessness, because they are basically under the control of adults. Imagaine not being able to choose what you want for your own breakfast, or to be able to watch TV when you choose, or even leave the house unless somebody takes you out, and that somebody decides where you are going on your behalf. It's not surprising really, when I think about it, that my two year old throws tantrums.

Well, in a family like the one which I grew up in, the adults are not just powerful, they are unpredictable. There was no pattern to my father's outbursts. There was no way of penetrating the mists of my mother's alcoholism. Boarding school was a haven for a while, but then I was unexpectedly moved to another school, right at the start of those teenage years, those times that are terrible even for carefully tended children.

I was always a nervous, introverted child. Some of my earliest memories are the feelings of resentment I had when anybody made me speak to them - I always preferred just to be left alone to read a book. I had a number of siblings, all of them more articulate than I, and since I was one of the youngest, and my nature was solitary, I had a definite place in the pecking order - somewhere very close to the bottom.

Academically, I did very well. Although I would say that I learned very little after the age of about thirteen, I had learned enough by then to get me through some O levels. I passed good enough A levels to get to University (I am not sure how, because I was stoned through most of my teenage years). But when I was young, all I knew about myself was that I was clever, and this was the only facet of myself that I was proud of, so I was determined to get a degree.

Once I arrived at Uni, though, I was outclassed and I knew it. It might not have been noticeable objectively - I dressed well, I was pretty enough. Academically I was more than capable of holding my own. But socially, I was an absolute cripple. I made some female friends, but I found it really hard to function in a group. I was a permanent bag of nerves. And I had no self-confidence whatsoever - I can only say now that I was pretty and well-dressed, I would not have thought this of myself back then.

It was this sense of inadequacy, rooted deep in my psyche, and my total inability to communicate effectively that brought me down. I was terrified by the other students on my course - they seemed to all be so harumphingly self confident. I knew I could never measure up.

I still cringe to think of the symptoms of my psychosis, and I do understand how people become so frightened of mental illness. It must have been absolutely bizarre to witness my distress and my erratic behaviour, to the point that eventually I was taken into hospital under a section of the Mental Health Act.

I can only assure you that it is worse to be that person who is dragged of screaming, in a straitjacket (honestly!) and then forcibly injected with all manner of drugs. I was convinced that I must have committed some awful crime to be treated in this fashion. And there is not much humanity in mental hospitals - to some of the nurses you are a person, but to an awful lot of them you will never be more than a patient, and a potentially dangerous one.

Violence has never beeen part of my nature. I am so grateful for that. Because when I was ill I was so unaware of what I was doing - or of the impact of what I was doing - I did and said things that I would never have considered under usual circumstances. If my upbringing had made me angry instead of sad and overly humble, I dread to think of the consequences of my breakdown. As it was, the only person who was hurt was me.

Of course, family members were affected. My mother was devastated, and for once she behaved like a normal mother, visiting me daily, sitting for hours in that awful hospital. For those of you who have never been in a mental hospital, it is a real eye opener - as a nineteen year old I was overwhelmed by the noise and chaos, what seemed to be constant fires starting, or people lying on the carpet bleeding from self-inflicted wounds.

It was awful. But in some perverse way, it was also exciting. I spent three months in that place, and by the end of that time I was semi-institutionalised - I would not go so far as to say that I liked the place, but I felt comfortable there. I had accepted that I was crazy enough to be in this crazy establishment.

I did leave, and quickly got back on the path to normality - away from home and back to University. I was functioning well enough to be able to complete my studies - I started my course from the first year again, and I got a good degree. I was still nervous, still had plenty of social issues, regular panic attacks - but I expected no less of myself. Living on my nerves was a part of my personality.

I was very lonely, but I got used to this too. I had boyfriends, but was too restless to settle down properly with anyone. I was disengaged from my family - I hadn't lived at home since I was 16. My siblings, mostly older than me, were starting to have families, and I adored their children, but was not ready to have a family of my own.

I find family relationships disappointing. Siblings, those people who we grow up with and who we hope will understand us best, are not always on our wavelength. Most people accept this and move on - but I found moving on hard, because I had no central stability, no notion yet of who I was, so I kept trying to root myself back in the past. But I kept finding myself rejected - my sisters had their new families now, they didn't need any other dependants.

Nowadays the thing that bothers me is that, having seen all three of my breakdowns at close quarters, my siblings seem not to understand that now I am 'mended', well again, I am as normal as they are. My friends, and I am lucky to have a lot of friends, accept me for who I am. But my family hold me back - we must be careful not to overstress her, it is implied, you know what might happen. They are watchful, as if distrustful of me, thinking I might go mad at any time. I suppose that it is the result of having seen me flip before, each time when they least expected it.

And I still have my place in the pecking order. I am a useful point of reference for the other members of the family. However erratically any of them behave, they can't be mad - because I am the mad one. I am the let out clause. They need to keep me in my place, so that they can continue to occupy the spots they have carved out for themselves - the achievers, the sane ones.

This was evident recently at a family wedding - I had had my hair done, bought a new outfit, and I sensed that my siblings were unnerved - I looked more together than they did. I had shaken the natural order. And things were said and done to reassert that order.

I don't mean that they don't love me, or even that they are conscious of this need to put me in my place. But it is well known and documented that family attitudes do play a part in schizophrenic illnesses. I never felt fully supported by my family, and now that I am fully grown - not just an adult but a complete person with a family of my own, I still feel a familial pressure to keep me in my place. A lack of trust, an undermining of my achievements. It is very slight, and I am very sensitive to nuance, but it is not imaginary.

Of course, I understand that they come from the same background as I have, and are damaged too, but have learned to cope with it differently. So although I may feel that I would have been more nurturing, more understanding of my siblings had the shoe been on the other foot, perhaps I would not have been. Perhaps it is all just a manifestation of the survival of the fittest.

And to be honest, I am unnerved these days if I bump into anyone who was ill at the same time as me, and who is clearly still not quite compos mentis. I wouldn't want to socialise with them, I would see their illness as a threat to the sense of calm and harmony which I have tried to foster in my young family. I feel terribly guilty about this. After all, if I am prejudiced, what hope is there for the rest of the world? This blog, though I have hidden behind the internet, is my attempt to redress the wrongs that are done against the mentally ill - but I am well aware of my own shortcomings in this respect.

Back to the family issues. Mental illness does leave you very weak - it also leaves you frightened to be strong, in case of what that strength might do. So for many years I have been accepting of my place in the family dynamic, as the one who was not quite right, the one who needed to be protected. But now I have four children of my own, and I have a need to look after them and to bring them up to be strong. I have to be a role model.

I would hate for any of them to be sentenced to schizophrenia. My husband and I are conscious of trying to make their lives as stable as possible. They are loved, they are indulged, but they know right from wrong, they understand the limits of their behaviour. I am not exaggerating when I say that we have four model children.

But also, if any of them should ever get mentally ill for any reason, I want to be able to say to them,'See here, you will get better' and to mean it, and to be able to hold myself up as an example. Because I was very, very ill, probably at the extreme end of the paranoid schizophrenic spectrum. And now I am a normally functioning member of society, albeit one who still feels haunted by her background. But I am working on that.

I have promised to take the kids to the shops - said I would be writing this for forty five minutes, and have taken almost twice that long. Lucky my other half is home - although he has man flu, poor thing, he is looking after the kids for me. They are distracted by a parrot which arrived early this morning, lent to us for a month by a friend who is off to New Zealand on holiday. Now, back to the squawking fray!

Friday, 4 December 2009

Family History

I have been thinking about which parts of my background I can share, and I have come down firmly in favour of keeping as anonymous as I can. None of my family are likely to read this blog unless I direct them to it, which I have no intention of doing.

But if at any stage they should get wind of it, I would not want anybody to feel threatened by what I have written. I know that some of the family are sensitive on the issue because a few years ago I wrote an autobiography and sent it to some agents. I got a reply - I can hardly believe it now - from a top agent, who said he might be interested but that he would like me to put more of a sense of time and place into the book.

When I asked one of the older members of my family for details of my parents' background, my father's business and so on, this person went ballistic. He was convinced that I would be compromsising his privacy (no, it is my autobiography, it is not about you), and was so upset that I decided to shelve my hopes of publication. Actually, I intended instead to turn to novels, short stories and poetry - I am still writing as much as I can, whenever I find the time.

This story about myself refuses to be shelved though. Probably because where I came from impacts so much on who I am, it needs to be excised through a good airing. And I am vain enough to think that it may help others to learn about how I became psychotic, and how I recovered.

My wider family aside, I want to protect my children as far as I can from the stigma of mental health issues. I really couldn't bear the possibility of them being taunted in the playgound for having a schizophrenic mother.

Readers, you might wonder who I think I am that anybody might be interested in my problems, but I live in quite a close knit community and people do seem to know an awful lot about one another, some of which information gets distorted by being over-shared.

So, I will say that I had a miserable childhood, which was not however, all bad. I had a good education, at least until my teenage years. My family had some peculiarities (whose doesn't?) but now that I have grown up I am quite glad that I come from the background I do. After all, my childhood is probably the best qualification I have in my claim to be a writer - I have been gifted with some tales to tell.

Also, anybody's childhood could result in an adult breakdown, especialy if the young person concerned had as little support as I did. And if that person used cannabis, as I did, then the danger is compounded.

So, families, do not blame yourselves if one of your number suffers a breakdown. Life is full of unfortunate happenings. It is how the person recovers that matters, and a great deal of that is to do with how they are treated - not medically, but in the attitude that others show towards them.

The chance of fully recovering from a serious breakdown in this country is very low compared to some so called lesser developed places - because here we are seen as outcasts when we suffer a mental illness. The mindset of others towards us really takes away any hope we have of being a normal person in society again - because we fear that other people will never see us as normal.

Of course, in my opinion nobody is entirely normal - I mean there is no blueprint for what makes a human being. That is another matter, however. In fact, I have to sign off now. I'm determined to only blog once a day - so the family are not neglected - and today I only allocated myself twenty-five minutes to do the job, which are now up. Pity, I could happily witter on for hours.

I like blogging on this subject. I feel like that person in the Greek myth who shouted his secret down the well because he couldn't hold on to it any longer. The one with the asses ears. If anybody out there reads it, good, if anybody benefits, then even better. If not, the process is cathartic for me in any case. Win-win.

Thursday, 3 December 2009

Post natal depression

Tired again today - this is probably a permanent condition of motherhood, especially with young children. We had a power cut at about one o'clock this morning. It lasted about an hour, and we would probably never have known about it if our five year old had not woken up - which caused quite a palaver as he is scared of the dark. We armed him with a torch and explained that there was nothing we could do to get the lights back on - but he couldn't settle, kept climbing out of bed and wandering around with the torch on, genuinely confused. In the end I took him into our bed and cuddled him to sleep.

Meanwhile the little one had woken up, started shouting and didn't stop. He doesn't cry in the night, just shouts very crossly, 'No bed! No! No dark!' until I get up to see to him. Then he will quieten down and wait until I am back in my cosy bed, just getting warm and sleepy before he starts yelling again. 'Mummy! Mummy! Now! NOW!'

That went on until three am this morning. In the end I stayed with him until he finally fell asleep. I got back to my bed, saw the five year old sleeping peacefully and was tempted to leave him there - until I remembered that I did that one night last week and have had a sore back ever since, from being thoroughly kicked in my sleep. So I picked him up and carried him back to his own bed. Peace at last...

Anyway, I was mulling this over today, feeling slightly under par as you do when you haven't had enough sleep, and I decided to share on my blog a piece of advice for new mothers. Try not to worry about any strange post natal thoughts or experiences, and if anything does happen which worries you, tell a health visitor, doctor or other professional. Don't be put off because you think that they might think you are going mad.

After my first child was born, I did suffer postpueral pyschosis, and believe me the doctors can tell when you are properly crazy. I won't go into it now, but it was probably the most distressing of my three breakdowns.

Probably because they knew how ill I had been, several people later confided in me about their own postnatal experiences. I though I was the only person I knew who had had any of these symptoms, so I was extremely surprised to find out that these women, who were some of the most organised and professional people I have met, had also suffered paranoia and unwanted intrusions into their thoughts.

One girl (well, thirty year old) had thought for several weeks that she was being followed in her car whereever she went. She was terrified whenever she left the house, alone or with the baby, but she suffered in silence, because she knew she was suffering from paranoia and she was even more frightened of telling the medics about it.

Another friend of a similar age confessed to me that she had seriously thought of driving her car off the edge of a motorway, with all the family in it including the new baby - or, as she explained it, the thought had come unbidden into her head, which had greatly alarmed her.

A lot of these upsets can be put down to sleep deprivation, and the rest to hormones. For most people, things settle down within weeks or months. If pychosis does set in, it is on a whole different plane. Meanwhile though, it does help to talk about these things, and health professionals should be able to reassure you about what you are going through and suggest ways to alleviate the symptoms - like making sure you rest enough, eat healthily and so on.

So, not exactly what I promised to write about yesterday, which was some of my background, with an aim to trying to explain how I ended up with a diagnosis of schizophrenia.

That will have to wait until tomorrow.

Wednesday, 2 December 2009

How I became a blogger

I had a restless night's sleep - partly the result of my son's coughing (we took him to the doctor yesterday morning and apparently his chest is clear, but listening to him last night you wouldn't have thought so), and partly because of the step I have taken in starting this blog.

I have been thinking about writing it for a while. I am over a lot of my history, realising that many people had terrible childhoods, and many people have current issues, but schizophrenia is the one bogey that I have not yet banished from my life.

I can't deny that I have it, much as I am tempted to. I had three breakdowns in eleven years, and was hospitalised each time. I am functioning well now, without medication, but there is always the fear that if I deny that the illness exists, I will leave the way open for its return. I recognise the signs of stress now, and the triggers - for example, I always try to make sure that I am eating properly, and sleeping well, and generally living an orderly life. Having a family to take care of makes all of this much easier - if I look after everybody else, then I am looking after myself too.

I am hoping this blog will help me to regain more self-confidence, as well as be informative for anyone else who is suffering or recovering from schizophrenia. Recovery is possible - I was given the bleakest prognosis imaginable by a team of psychiatrists, psychologists and other mental health professionals. I believed in their prediction of my future for a long time, but with some discipline and determination I have slowly worked my way forwards again, to the point where I believe you would have difficulty in distinguishing me from any other schoolgate Mum.

It is only my perception of myself that still lags behind - I persist in seeing myself as in some sense flawed, damaged by the illness, and perhaps even further by the label of it.

I often wish that schizophrenia could be re-branded; called something more acceptable, less frightening, much as manic depression is now known as bi-polar disorder. 'Nervous debility' was the term that my GP used to put on my sick notes - he claimed not to know how to spell schizophrenia, and shut his ears to my attempts to tell him. I should have taken the hint.

I am working against the clock - I have a seven year old daughter who is an excellent reader, and who may catch me at this blog any time. I do intend to tell my children my deep dark schizophrenia secret one day, but hopefully that will happen on my own terms. Apart from anything, substance addiction seems to run in my family, and since cannabis played a part in my downfall, they will need to be told about the risks.

If anybody out there finds any of this useful, please pass it on. I have read several other blogs on this subject, mostly American, and some of them are really informative and well written. (I particularly liked, and the websites of Rethink and Mind are also very helpful).

However, I think what distinguishes my experience is that I have found a way through - the others seem to be still suffering to some extent, though they may have learned to live with their voices, or manage well on their medication.

I have been well for more than ten years, without mediation, and although I am still wary of boasting about it, in case everything goes belly up, I think my experiences may be of help to others. I am sure I am not the only person to have recovered totally from the schizoexperience - maybe others are frightened, like me, of going public.

Tomorrow I will write a little about my background (and try not to give too much away!)

For now, my last comment is a useful hint - I hope. From what I can make out now, a lot of severe breakdowns involve religious elements, and it is not unusual to think that one is the Messiah or something similar. I sought out the mental hospital chaplain on one occasion when I was an inpatient suffering from very severe symptoms, and his advice to me as I was rambling on about goodness knows what was simple, 'Shut that door'. I took that to mean a door in my mind, and after that if I heard voices, or felt panic, or had other unpleasant experiences, I used to visualise that door closing, leaving me firmly in the here and now, and giving my mind no space to wander elsewhere.

Tuesday, 1 December 2009

Starting Out

My husband was really scared just now when I was setting up this blog. I have never seen him quite like that before. Usually, he is the rock and I am the quaking limpet.

'People aren't going to like this' he told me. 'People don't want to see schizophrenia and school in the same sentence'.

But that is my whole point. There is so little understanding of mental illness out there, and to my mind schizophrenia is the least understood of all.

I am the schizophrenic at the school gate. I am also a loving wife and a devoted mother of four young children.

I was diagnosed with schizophrenia when I suffered a nervous breakdown at the age of nineteen. I recovered well from this illness, and was only told about the diagnosis when I was twenty-five, after my second breakdown. I was so badly affected by the label that I then withdrew from society for several years.

So no matter how many times I read now that schizophrenia is nothing to do with having a split personality (rather, the only divide is between the emotions felt and the outward display of those emotions, like laughing at moments of sadness) or that schizophrenics are no more dangerous than any other members of the general public, I know the potency of that single word.

In recent years I have lived my life to the full - I was lucky beyond belief to meet my wonderful husband and build a family with him. I have many friends, and a really active life. Yet I live in fear in case these friends should find out about my mental health history - I really feel that most of them wouldn't be able to cope with the information about my diagnosis and that some of them would go so far as to shun me.

I hope I am wrong. But I am going to cover my bets, and write this blog anonomously for now. It is about my daily life, and about the events which have led me to where I am now. I hope it may help someone - anyone who finds themself in the position that I was for years after my diagnosis, with the world tumbling to shreds around me and all my self-confidence vanished, as a newly labelled 'Schizophrenic'.

I will relate more about all this tomorrow.