Friday, 28 October 2011

Johnny English Reborn

Hi All

Been to see Johnny English Reborn this evening.  Younger daughter has been desperate to go - insisting that all her friends have seen it and found it really funny.  I have been refusing to go, because I have read several reviews of the film, all dismal.  But actually it was really good - more than a few laugh-out-loud moments, plenty of tongue-in-cheek humour...better than the first Johnny English, if I remember rightly.  Although of course seeing a film on the big screen does make a difference.  Anyhow, I am glad we went.

I don't know where this week has gone, I honestly don't.  I am going to look at my calendar and write down all the things we have done, because I don't even feel as if we have had a half term holiday.  I meant to do stuff with the boys - some maths with my elder son, some drawing and stuff with the little one.  And some eleven plus work with younger daughter.  And just some hanging out with the older one.  Instead of which, I feel as though I have just been tidying and shopping and cleaning and washing and grumping around.  What a waste of a week.

I know that in fact it must have been more constructive than it seemed.  We have had a few long dog walks, for a start.  We have had friends over.  We went out with my Mum one afternoon.  We saw Horrid Henry.  And the kids have had a chance to relax and chill out, which is the main point of a holiday - it's just I suppose that I don't feel that I have spent enough time with them.  Oh least the house is in a reasonable state, ready for next week when the kids will be back at school and I can knuckle down to some work.

Toddler has been coughing a lot recently - the cough went but seemed to come back after just a couple of days.  He had a real attack of it on the way to the park this afternoon - I had to pick him up and carry him in the end.  I think he may be getting asthma - although of course he may just be suffering from a virus or a series of them.  He is not coughing tonight for the first time in ages, so touch wood, perhaps he is on the mend.

I put in my job application to Time to Change, and now have my fingers tightly crossed, hoping to be invited to an interview.  Que sera, sera. 

I have read some brilliant stuff on the net in the last day or two, on Rossa Forbes' blog and the Beyond Meds one.  I won't be able to post for the next few days, but promise that as soon as possible I will set up links to these pieces - meanwhile, do explore those sites for yourselves.

Enough for now - take care all of you, and I will be back soon.

Louise x

Monday, 24 October 2011

Horrid Henry

Hi You All

Took my kids and some of my elder son's friends to see the Horrid Henry film today.  Elder son had a lovely time - he was really in his element.  So that was nice.  I love watching him when he is animated.  He has the most beautiful smile, all the more precious because it is quite rare - at least in comparison to Toddler, who is a ray of sunshine, with a permanent beam. 

Toddler is sweet too.  If I call him names, 'Pumpkin' or 'Sausage' or whatever it might be ('Stinky' this evening, when he was refusing to have a bath, which epithet made him giggle delightedly) he says, 'I am not a ......(insert term of endearment)....I am your darling'.  Which he is. 

It is the half term holiday here, and I can tell that it is going to go far too fast.  I haven't arranged a lot of things to do, but at least one thing for each day - friends coming to play, arrangements to meet other friends for walks, that sort of thing.  I wish the half term was two weeks long...

I have a bit of writing to do - a theatre review, a job application to complete.  I am going to knuckle down in a moment.  I did do the job application the other day, but didn't send it in, and now want to look it over and improve it if possible. 

I am disappointed that Rethink have turned down my offer to help at their campaign next Tuesday.  They had enough volunteers already apparently.  Huh.  Still, I wish them luck with it.  Look out in the media, guys, for details of the 'Unhappy Birthday Schizophrenia' campaign on the 1st November, in London.  I could have been there!

Anyway, hope you are all well and happy.  I am in half term mode now, but will try and check in with some semi-intelligent posts over the next week or so.  All the best,

Louise x

Thursday, 20 October 2011


Hi Everyone

I went out last night - to what I suppose might be described as a business networking event.  It was interesting - to see what I have been missing all these years, for one thing.  I have been shrinking away from social functions for some years now, basically because of my problems with anxiety and nerves. 

Well, I don't really have those problems now.  I have managed to reason to myself that there is no inherent threat in a gathering of people, that my nervous reactions developed when I was a very young child and those feelings are just not appropriate to my life any more (as an old lady.  I mean mature woman.   I mean grounded individual).  I think my system finally had enough of the constant rushes of adrenaline, and decided not to bother responding with the old flight and fight response.  It got bored.

So, I went out in response to an invitation, as other people having been doing all their lives without thought.  It was a pleasant enough evening.  We listened to a couple of speakers, who had incredibly different styles of addressing an audience, which was interesting in itself - perhaps no way is the right way.  (Note to self:  Clarity seems to be the most important quality when expressing oneself in public). 

I am ashamed to say that I did no networking - I knew I should make the effort, but just didn't feel in the mood.  So instead I guzzled my tea, ate more than my share of biscuits and busied myself with my notebook (I had a free ticket for the evening, because it had been assumed that I was there to write about it for a local magazine.  Which I may do, but whether or not any article makes it as far as print is quite another matter).

If I go again, which I may well do (these events are monthly) I think I will try to talk to more people.  I will know what to expect next time.  Which is basically that this sort of event is very low key, or at least as low key as you want it to be.  All those years when I was young, when I craved social contact but was scared of engaging, I was missing the point - that these functions are not all that exciting.  Business life, or work life, is just a different way of behaving - no more or less challenging than looking after children and making conversation with other parents and various people I meet in the course of the day.

If I had known all this when I was young - not just known it, but been able to act on it, I could have had a very different life.  I could have used my law degree, and gone into a professional job or even public life.  (Well, maybe!)  But then of course, it would have been a different journey, and what I am also coming to realise now is that I have actually enjoyed my journey - or, more precisely, if I had not lived the life I have I would be someone completely different, and almost certainly no happier than I am now.  After all, I have Paul and the children - and I might never have crossed paths with Paul, if I had been a high flyer.  And whatever happens to me from now on, it is my home life that matters most.

I would like to get that job though!  I managed to complete my application on Tuesday, and although my work experience is a bit thin on the ground over the last many years, I think the job is well within my capabilities.  Whether it is within my grasp is another matter.

I finished the grand tidying-up indoors too.  Well, almost.  Although now I am following everybody around and as soon as they put something down I remind them that is not the right place for it and ask them where it should go.  Who will tire of this game first, me or the children?  Me, of course, and then our home will return to its usual chaotic state...That's life!

Hope all of you are well and happy.

Louise x x

Tuesday, 18 October 2011

Whatever Normal Is

Hi again

I fear this is going to be one of those wittering posts - I sat down with no clear idea of what I was going to write, only a sense that a post is due because it has been a few days since I wrote one.  You have been warned..

Back to normal today - in that this is one of my three days a week when I have several hours of 'free' time, and this week I have no lectures or mental health functions to attend.  Toddler was a bit poorly at the weekend so had a day off play school yesterday.  But it is a measure of how much he likes the new play school that he volunteered to go back today.  He is better, although still coughing a bit at night, but I would have let him stay home if he had wanted.

Maybe it is also a measure of how boring he now sees my days at home - I cleaned and tidied the house for hours and hours yesterday, we walked the dog and that was all.  Maybe he just doesn't want to be a part of that, when he can be lego-ing and play dough-ing and painting to his hearts content, surrounded by his loyal friends and acolytes.  Yes, that's probably it. 

I am just glad he is happy.  He is much easier these days - now that he has settled into the new play school and everything at home has settled into the new term's routine, he is reassured and so doesn't feel the constant need to follow me around and assert himself in all matters to make sure he has my full attention at all times.  Phew!  He really is a delight of a child, whether he is being difficult or not, but I so perfer it when he is not.

Anyway, here I am back to 'normal', and I realise that I am not sure what 'normal' is.  What shall I do with my fours hours of freedom?  I could carry on tidying - I got an immense amount of satisfaction yesterday from the rooms I organised and there is still plenty more to do.  But maybe while one day of manic tidying is satisfying, two might tip the balance and make me feel oppressed.  I could write - always rewarding.  I have to walk the dog of course, which will be a pleasure on this bright sunny morning. 

Have to hang out the washing too - I feel so guilty when I bung it all into the tumble drier to save time.  The conservatory is likely to be very hot this afternoon, and it won't take long to shove it all out there on airers.  Then I put it into the tumble drier while it is still damp, so that it doesn't need ironing.  Cunning, eh?

I should make myself concentrate enough to fill out the Time to Change job application - no rush for that, but probably better to do it before the half term holiday when there will be other claims on my time.  The more I think about this job the more I think it will be perfect for me - only two days a month and working from home, so I can still be here for the kids.  And in the mental health field, which is probably the thing I have the most experience of and feel the most passionately about (apart from childcare, which I wouldn't consider as a career.  My own kids are enough for me to look after.)  But will they want me?  Watch this space...

Anyway, what I am not going to do is spend so long worrying about what to do today that I get nothing done.  It has happened before.  So I am going to hang out the washing, take my little dog for a lovely long walk at the beach and then FOCUS.

Have a good day, you all.

Louise xx  

Saturday, 15 October 2011

Unhappy Birthday Schizophrenia

Hello again

And I was supposed to be having ' A day or two off'.  I just wrote an answer to my friend's comment from yesterday (a different friend from the one I referred to in the blog post itself).  Then turned to my email to find about seven emails from Rethink Mental Illness.  (All on the same subject.  Last time it happened we got a letter of apology through the post, signed by the chairman himself.  Note to Rethink, this is a waste of your resources.  We understand that computers have blips.  We don't take it personally).

The email was asking for volunteers to help with an 'Unhappy Birthday Schizophrenia' campaign.  The email was so timely, given my recent upset on the schizophrenia subject, that I am determined to join the campaign.   Even though it means cutting a family holiday short.

So I already feel energised, and am back on my mission.  I think yesterday's confusion was caused by me forgetting that when I say, 'I have a diagnosis of schizophrenia' people assume that I am saying 'I have schizophrenia'. 

Which I am not saying, because there are so many conflicting ideas of what schizophrenia is, what is does, how long it lasts for, whether a person can ever recover.  When I was diagnosed I was told by a team of psychiatrists that I would have to be on medication for ever, and would get worse as I got older.  A nurse from the same establishment (who married a patient with the same diagnosis) told me later that the term 'Schizophrenic Burnout' is well known - that even floridly ill patients recover by the time they are about fifty - the illness just wears itself out). 

The term itself is useless - there is no test for the illness, so who is to say whether it really exists.  There is no medication or operation that cures it completely.  And people who do get better are reluctant to admit to ever having 'had' it, for obvious reasons.  It is a muddle.  And my friend who commented yesterday was right - I can't say what is true of anybody else with the diagnosis.  It is hard even to be confident about myself, sometimes.  It is Paul's constant reiteration that I am normal that helps me most.

Anyway.  Thank you Rethink, for pulling me out of my trough of despair this morning.  I will be happy to help with your campaign, if you will have me.

Louise x

Friday, 14 October 2011

The Nature of Schizophrenia

Hi Everyone

I have to confess, I am a bit confused today.  I have had a bit of an upheaval this week - family troubles, not in my immediate family, but close enough.  I was already starting to suspect I may have been overdoing things, what with the Mental Health Week stuff up at the Uni and all.  Incidentally, I did head up there again yesterday, but there was no sign at the campus I went to of the groups that should have been there, and frankly I was a little relieved.  I went to see my Mum instead, and met Paul for his lunch hour.

I am not sure how much more of this I can take - the whole schizophrenia thing seems such a muddle suddenly and I am not sure any more that I am capable or knowledgeable enough to try to help.

Not sure I can even get my ideas across with sufficient clarity in writing - yesterday's blog post should I suppose have been framed in more equivocal terms.  Rossa commented that people may be violent when psychotic yet normally have no violent tendencies, just like some alcoholics turn 'mean' when under the influence.

Is this the case?  Probably.  I only know what is true of me - that I would never be violent, and never was, even on the three occasions when I suffered from psychosis. 

But if people have been violent - have murdered, as in the case I wrote about yesterday - it is too much of a risk to release them into the community and hope they won't have a relapse. 

I was talking about this to a friend this afternoon, and she thought I was totally wrong.  She said that in that case nobody should be released into the community.  I am rubbish at expressly myself verbally - I get too emotional, become incoherent.  But actually this really hurt me; not on a personal level, because I know she didn't mean it like that, but because even she thinks that people who have been mentally ill, or diagnosed with schizophrenia, are a risk.  All of us.

'How do you know that anybody released into the community won't do something violent?' she asked.  'You don't' I said, 'But you don't know that anybody is not going to do something violent one day'.  But I was astonished that my friend (who knows more than the average person about mental illness) actually thinks that because you have been mentally ill - pyschotic, diagnosed as schizophrenic, whatever - you are then automatically more of a risk to the public.  If you have never been violent before.

The upsetting thing is that I had already tried to explain to her how unfair I feel it is that schizophrenia is associated in the public consciousness with violence and that the only way to stop this was to stop giving people this diagnosis.  A person who is violent when they are ill is completely different to someone who is not.  If nobody can differentiate between those two types of people (not clinicians, not personal friends and family of sufferers) then charities like Time to Change are fighting a losing battle trying to stop stigma and discrimination against mental illness.

To be honest, all this is doing my head in!  If I believed that I am a risk, a danger to the public, if I might go off the rails any day and hurt someone, then I would take medication, or go to hospital voluntarily and stay there forever.  I would lose all belief in myself as a person, if I believed that I had an illness which made me a potential murderer.  I lost years of my life already for that very reason.  I swallowed pills, attended a day hospital for years where I smoked fags and got fat along with everybody else there.  Eventually I managed to work out for myself that I am fine, safe, etc etc.  And this has been borne out by my daily life for many years now. 

But if even my friends think I am potentially dangerous, am I the only one who does not?  Why am I allowed to be in charge of children, in that case?

In trying to destigmatise mental illness, in coming out and saying, 'I was diagnosed with schizophrenia, it is not the end of the world, you can recover as I have done', am I just laying my head on the block?  Should I be trying to direct my efforts instead at getting my diagnosis removed?

Maybe there is just not enough known about 'schizophrenia'.  It is such a pity that there is no objective test, no properly effective medication.  What a muddle.  But still, if in Finland they can almost always stop people getting ill again after their first epsiode of psychosis, there has got to be hope here.  I wonder what they do with their violent cases...  I should look into that.

I don't even know whether all this has been clear.  I just know that I need a day or two off now.

Louise x x   

Wednesday, 12 October 2011

Sad News

Hello again

I have been out volunteering this evening, with one of the few groups of people who still don't know my diagnosis.  Sometimes I wonder if I did the right thing opening up - on the other hand, it felt like the right thing at the time, and there is nowhere left to go but forward.

I was really upset today by a case that I read about in the paper.  Nicola Edgington, aged 31, a schizophrenic, killed her mother in 2005.  She was put in hospital.  Four years later - FOUR YEARS LATER! - she was freed.  She was considered fit and well for release,  and conditionally discharged with the approval of the Ministry of Justice.  She lived in supported accommodation and received treatment in the community.

Now, just another two years down the line, she has 'allegedly' (we have to use that word since the case has not yet come to court, although the facts are not in dispute) murdered again.  She used a stolen butcher's knife to kill Sally Hodkin, a 59 year old grandmother, on a busy London street and also slashed the hand of a twenty-three year old who was waiting for a bus. 

Excuse me, but what sort of a doctor was it who let this woman go free?  What sort of Justice is dispensed by a Ministry who authorised this action?  They let a murderer back into the community.  (Presumably her supervision arrangements failed, we don't know all the details yet).  She suffered a relapse of her illness and killed again.  But that was predictable - she had killed once when she was ill, they must have realised that if she became ill again she might do the same.

This has been bothering me all day.  It is only this evening that I have found the words to express my unease.  I cannot believe that medical professionals think that it is schizophrenia which kills.  This is the only explanation for their action.  This woman was ill, they think, she was not in control of her actions.  The poor woman had an illness.  She had schizophrenia.  Her schizophrenia made her murder someone.  Now we have cured her, she is well, she can go and carry on with her life.  (Although of course she will always have schizophrenia because we have said she does, so we will make sure that she takes her medication and lives by our rules.  Then nobody will get hurt again).

Schizophrenia is not a murderer.  Mental illness does not wield a kinfe and thrust it into the body of another human being.  Any more than alcohol does (I have mentioned here before that a lot more murders are committed by those under the influence of alcohol than by the mentally ill).  A violent person commits a violent crime, and there is no excuse for that.

I do feel some sympathy for the murderer.  I have been severely mentally ill and I wouldn't wish it on anyone.  I know how frightening psychosis is.  But she is still responsible for her crime.

When I was told my diagnosis at the age of twenty-five I was terrified.  The label 'Schizophrenic' made me scared of myself.  I was so relieved that I had never hurt anyone when I was ill, and I confided in a mental health nurse that I was frightened that one day I might.  But she said straightaway, 'If you are not a violent person you will not be violent when you are ill' and she was right.  I had suffered two breakdowns by then and I had never harmed anybody or anything.  I had another breakdown (my third and final as I like to think of it) six years later and I was still completely harmless. 

And I have been harmless ever since, and always will be.  I abhor violence.  (Incidentally, I have never raised a hand to any of my own children.  I think that to do that would make me a failure as a parent - to me it is completely obvious that just as one should never assualt another adult one should even more importantly never assault a child, one's own or anybody else's).     

If you are a violent person though, perhaps a mental illness may bring out the violence in your personality, just as alcohol may.  This should not absolve the perpetrator from responsibility.  If when you are mentally ill you lose control of yourself and you murder another person, or indeed harm anybody in any way, you should not be able to hide behind the protection of a diagnosis.  Okay, put the woman in hospital (although whether a secure hospital is a better environment than a prison is in my opinion open to debate.  I have never been in prison so I can't be sure, but a mental hospital is bad enough).  At least in hospital though, the ill woman can be treated.  But then keep her there.  Keep her there for many many years, as long or longer than if she had been in prison.  Keep her when she is ill, keep her when she is well, protect the public for as long as possible until you are sure you have a reformed character, not just a person who is no longer mentally ill. 

If it is wrong to keep a well person in a mental hospital (is it?) then move her to prison.  This woman killed her mother!  Her own mother!  Her mental illness did not do it.  She did.

Because otherwise, if you let her go, as you did, what you are releasing into the community is a time bomb.  You are letting a murderer go.  You are absolving her of all responsibility for her actions.  Don't worry, you are saying, you did not kill your mother.  Your illness did it.  And you are leaving her free to kill again.

And what you are also doing, doctors and ministry officials, is you are creating more people who will look askance at the other so-called schizophrenics in their midst.  The people who became ill and who suffered but who never hurt a soul in the process.  The ones who are law-abiding, anxious, fearful, often over-medicated, sometimes visibly 'strange', who would never hurt a fly.  The ones with a low life expectancy because of the cocktail of anti-psychotic drugs that they have been taking for most of their lives.  Their neighbours will look at them and shy away, shunning them, fearing them, wondering when they are going to commit their next atrocity and hoping to be as far away as possible when the dreaded event occurs.

I have never hurt anybody and I know for a fact that I never will.  When I was very unwell, I suffered all sorts of delusions, received messages from the newspapers and television.  The world seemed to be set to a constant spin cycle.  I was completely and utterly doo-lally.  But I never got the idea that I should kill anyone - and if I had I never would have acted on it.  Instead I got fearful, stopped driving my car, stopped going out.  Stopped eating.

In the deepest throes of mental illness, even when we have no apparent control over what we are doing or saying, we are still people and we do still know right from wrong.  I was as ill as anybody could be - I cut off from reality because I could no longer cope with it.  But I was not a murderer, and nothing could have made me become one.  'Schizophrenia' whatever it may be, does not create killers.

Schizophrenics who kill are not innocent victims of an illness.  They are not robots who have to murder because a voice tells them to.  They are dangerous, violent individuals.  They need to be locked up.   

Schizophrenia is indelibly associated in the public consciousness as the disease of killers.  It is massively unfair.  So how to stop these assumptions?  There is only one way.  Stop diagnosing people.  Stop labelling them, making them live under the weight of diagnosis and prognosis.  I was told I would have to take medication for the rest of my life and that I would never get better.  I have now been free of medication and free of symptoms for many years.  During this time I have raised a family, seen my mother go through treatment for throat cancer, had a child hospitalised with a serious illness; lived, in other words, through periods of extreme stress.  So maybe there is room for error in the pronouncements and predictions of psychiatrists and mental health workers.  Maybe they don't in fact know everything there is to know about mental illness.  Perhaps their patients know more.

And whether or not this woman does have schizophrenia, if there is such a thing as schizophrenia, it doesn't make any difference to the outcome, except to confuse matters so that she was released four years after murdering someone to go and murder someone else.  (I just had a thought, will they let her go again in another few years?  They could do, with an 'improved supervision package', if they fail to realise that they have been looking at it all wrong).

So on Nicola Edgington's medical record, why not write 'Mentally ill.  KILLER.  DANGER.' (In huge red script).  And on mine 'Mentally ill.  SAD'. (Or LONELY.  Or STUPID.  Or anything really, as long as they don't tell me about it.  Because it is after all, only their opinion). 

Why do I, and hundreds, thousands, millions more like me who have been diagnosed with a mental illness have to be discrimated against because a proportion of the population is violent?

Why did Sally Hodkin have to die on Monday?


Tuesday, 11 October 2011

James' story


This is the link to a blog post written by one of the trainers who Paul and I met on the Time to Change Roadshow.  This guy is my inspiration - he is incredibly articulate and well presented in person and I really found it hard to believe that he had been through so much.  This is exactly the sort of person who is going to help us all overcome our prejudices.  I hope he continues with the good work:


University Beckons

Hi Guys

The title of this post is a bit optimistic - the University is not beckoning me yet, except in my dreams.  I didn't make it there yesterday, I ran out of time.  But I did get there today - went to an author talk (which turned out to be more of a round table discussion) with Minette Walters (of The Ice House and many other stories).  She was lovely - very articulate, and passionate about her cause, which in this case was fund-raising for a charity called 'Footprints' which helps to rehabilitate ex-offenders. 

The other people present were mostly connected with the University, or the NHS Trust.  Some were there because they had an interest in mental health, some just because they liked Minette Walters, some because they were interested in talking about funding for their own charities.  A mixed bunch, in other words, but all quite professional. 

And then there was me.  Everybody introduced themselves and said a bit about themselves.  I said I am a writer and a mother, and then admitted to having 'a diagnosis'.  I didn't say what, but then Minette talked a bit about depression and I realised that was probably the general assumption as to my problem

An interesting discussion ensued.  Minette talked about funding for a while - I didn't realise there was so much competition between charities for access to the same pot of money.  She spoke of the differences between central and local funding.  Then the discussion broadened onto offenders and the reasons for them ending up in prison, the fact that most of them have drug or alcohol addictions, or mental health problems.  Minette said that the only schizophrenics who are dangerous are those with paranoid schizophrenia.  My heart began to thump.  Other people pitched in, the word schizophrenia was being bandied about more and more, and the need for staying on medication was mentioned.  Then someone said that some schizophrenics actually don't want to be on medication because they enjoy their distorted view of the world.  None of this was said disparagingly, but I am pretty sure the discussion would not have taken place if anyone had known the nature of my 'diagnosis'.

By now I was going a bit red and my heart was thumping fit to burst.  I knew I had to say something, but I was so scared of drawing attention to myself.  But I told myself there was no real threat.  I took a deep breath.  I remembered Gianna's post yesterday on the Beyond Meds site about how we should focus on the issues about medication and about diagnoses.  So I knew what I needed to say.

And I said it!  I am not as articulate in person as I am on paper - I am working on this, but I have so little experience of speaking still.  (I only really learned to talk after I had the children, I was perpetually tongue tied before that.  I never learned the art of conversation as a child, I could only ever see the pointlessness of the spoken word).

But I said that my diagnosis is schizophrenia, and paranoid schizophrenia at that.  I should have said that the 'paranoid' refers to fear of others, not wanting to hurt them.  But I am sure they could all tell that I am not dangerous by looking at me.  I said that drugs often do more harm than good (well, that is what I was trying to say, I am not sure how clearly it came across).  I said that I am free of medication. 

They were all intrigued, and Minette was lovely.  Afterwards, she asked if I have finished a 'whole book' and was impressed when I said that I had.  She asked if I had a publisher, which is where if I had any sense I would have asked her to pass my details on to her agent.  But I am too thick for that.  I just muttered a while about how I have published on Amazon Kindle...  (Minette Walters writes a book most years.  How amazing is that?  That is where I need to get to).

Anyway, I got a chance to speak to the very nice man who is currently in charge of the Press Office at Bournemouth University, wrote my details down for him, and said that I would be happy to give a lecture of some kind, or a talk to students.  (They teach a lot of nursing students there).  I even directed him to this blog (hello, very nice man). 

I spoke to another couple of people afterwards, one of whom was very open minded (but so erudite it was hard to follow his train of conversation).  I told him about the success rate of treating psychosis in Finland, and aired my views about how drug companies have a vested interest in drugging people. 

One of the ladies then came up to thank me for speaking out about my diagnosis.  She works in dementia now, but worked in mental health for many years.  She seemed very pleasant and we had a good chat - until I aired my views about the unhelpfulness of diagnoses and the fact that although I have been told I have schizophrenia I don't necessarily believe it any more.  She immediately closed the conversation down, said goodbye and moved right away.  I was fine to speak to when she thought I was 'Owning my Illness' but once I disclosed that I was 'In Denial' she just couldn't cope. 

There is such a long way to go to get these people thinking out of the box that they have been taught to think in.  My problem is, that they will always expect me to be on the verge of another breakdown.  If I ever have one, then I will have proved them right.  If I die without having had another one, well then I will be dead.   I will never be accepted as 'normal' by mental health professionals while I am alive (or so it seems to me.  It would be nice if I am wrong here).  This particular lady was talking about brain scans - I said that I would be more than happy to be brain scanned if the whole population was brain scanned too.  I said it would be impossible to say that any one person was the 'most normal' and any other was the 'least normal'. 

But maybe the results of the brain scans would differ according to whether people had had fish for breakfast, or had been for a long walk the day before.  Or whether they were on psychiatric drugs, of course. 

What if David Cameron's brain scan purported to show that he had schizophrenia?  Would he be put on medication?  I tried to tell the woman that she should not judge - no human being should judge another, should have the power to 'diagnose' their mental health.  But she had already switched off and moved well away.   

Which was just as well, because I had parked outside the flat of an old friend and had promised to have tea with her when I returned.  This was at the sheltered housing project that had given me my first proper home, when I was in my mid twenties.  She is still there.  Happy enough.  She was very hospitable and we had a good chat.  What made me sad was that she is worried about the upcoming reviews of the incapacity benefit system, about how she would cope with less money.  I tried to reassure her that it would be fine - I am sure it will be.  But it reminded me of how mental health patients are kept in place by the benefit system in this country.  Protected by it too, of course.  But it is hard to get better when you are paid for being ill. 

I have seen a job advertised today, for one of the mental health charities, that I am definitely going to apply for.  Being at the University today, being part of a stimulating discussion, made me realise that I am not so very different from other people out there in the workforce, and that I have something to offer, especially in the mental health field.

The trouble here is (or might be, it is only my opinion) that I am coming at the issue of recovery from a different angle.  The medical model is so entrenched.  It is probably too late for those of my generation who have been on medication long term.  They need it, mentally and physically.  (I think, from observation).  But I would like to see the younger patients coming through the system getting a different deal.  I want to see them treated as they are in Finland, with the system of' 'Open Dialogue' so that their first experience of psychosis is also their last and so that they live long lives, as free of medication as the next 'sane' person. 

I feel that it is my duty to help people see that recovery - real recovery, not the re-defined version - is a real possibility.  Maybe I am not the only person I know who has survived a diagnosis of schizophrenia, but I am the only one I know who owns up to it.  Even the old friend I saw today, who shares my diagnosis, and who is on the dreaded 'depot' injections (which make her feel really ill, but does anyone care?)  keeps the whole thing to herself.  I don't blame her, or anyone else for doing this.  I did it myself for long enough.

But I have come out into the open now, and there is no turning back.  Next up - a job, I hope, with 'Time to Change' to help to continue to spread the message.

Hope you are not worn out from reading all this, guys. And, nice man from the Press Office at the University, please email me if you can see any use for the story of my experiences.  I am sure it would be helpful for your mental health nursing students....

Louise x.   

Monday, 10 October 2011


Hi Guys

Well, the hullaballoo has died down somewhat.  I heard from another sister, who has just read the book and thinks it is ok, but that the writing itself could have been better.  Ouch!  But I know really that my writing is fine, although if and when I publish a paperback version I will revise the book to make it more punchy and compelling. 

Trouble is, all my family have their own perspectives on my book.  In the book, I am writing about my experience of childhood, but for obvious reasons they have their own ideas about it.  Because they were there, or in the background.  What they keep failing to realise, no matter how I spell it out, is that I have not written a book about my childhood.  I have written a book about my experiences within the mental health system, and I have had to fill in certain details about my background because they help to explain why I had breakdowns, why I didn't cope better.

Interesting, actually.  I have only just properly realised that is the subject of the book - when I was asked before I have said it is partly about me, and partly about the system.  Now I have clarified that to myself, it helps.  And it will help with my next endeavour, which is to be a book about recovery.  I don't know how long that will take me to write, but I feel now that I do have the distance to write it.  I am not afraid that I will break down at every turn - which is hard to explain, because in some ways I do feel quite fragile at the moment.  But I think it is a normal sort of fragile, not a completely vulnerable state of being.  I don't think I will ever be as vulnerable as I once was - because I have Paul now, and our children, to buoy me up.

I keep coming across a quote from Jung, to the effect that a schizophrenic stops being a schizophrenic when he feels understood by someone.  (On the Beyond Meds site).  So, whether or not I once was a schizophrenic (not a word that I would ever call anyone else) I am certainly not now.  And personally, I think that I was only a very vulnerable and frightened young person, with a total lack of support and understanding, and that my breakdowns were pretty much unavoidable.  I was lucky that I had them in a way, although it may take me a while to explain that properly.

Anyway, I must get on with some other stuff now.  It is World Mental Health Day and I am thinking of popping along to the local University, where they are hosting some events.  Shall I, shan't I? 

I will keep you all posted.

Louise x

Friday, 7 October 2011

Friday continued

Too tired to work out how to correct the last one, so will just carry on.  Sorry, readers.  Was going to say, would never put him through surgery.

Anyway, we had a good day.  The time just flies past until three when I have to start the school run, and then it is mayhem until Paul gets back at about six.

Tonight I am emotionally drained - I had a horrible phone call from my elder brother who has just found out about my book and is totally overreacting, without having even tried to read it.  I won't go into details here about what he said, but it was really not nice - not the way anyone should talk to their sister or anyone else.  Really properly unpleasant.  He is worried about what is in the book.  I did try to tell him that if he read it he would find out that it is about me, not about anyone or anything else in the family.  But he wouldn't have it.

What I didn't tell him, but wish I had now, is that almost everybody else in the family already read the book ages ago and that nobody else has had any problems with it.  He is convinced that the whole family is outraged.  Because he spoke to my younger brother earlier, who denied all knowledge of the book.  I know this because my younger brother phoned me earlier this morning, told me the older one had heard about the book and was on the warpath, and asked me not to tell the older one that he has in fact already read it.  Basically because he is scared of him and of his reaction if he knew that he knew about it already and hadn't said.

Is anybody following all this?  I'm not even sure if I am.  It reminds me of an American TV programme I used to watch decades ago, which took the mickey out of Dallas et al and detailed the most convoluted and impossible plots ever in a voiceover at the beginning of the show.  I wish I could remember what it was called...Paul is saying something about Burt.

Anyway, the only person who has the right to be upset about the book - the only person who is really presented in a bad light - is my mother.  And she has been saintly, bless her.  She just said 'It's the truth'.

I just hope my brother will calm down in a few days.  Maybe he will even read the book and come to understand a little more about life, or at least about my experience of it.  As things stand he has told me never to contact him ever again and to burn all evidence of ever having known him.  Reasonable, non?

Going to stop going on about it.  One of my sisters has just called and reassured me that it is all nonsense and everybody else actually likes the book etc.  So I will put it out of my mind.  I knew this particular brother would go nutty when he heard about the book - he was the one who objected eight years ago when I first wrote it.  I decided then to put it on the back burner - not worth upsetting him, I thought - but the book just wouldn't go away.  It needed to be written (that sounds very grand and self-important, I don't mean it that way.  But sometimes in life you need to do what is best for you.  I have spent a lot of mine trying to please others and tiptoe around people.  Trying to make myself loved. 

Now the worm has turned.  Ha!

Hope you are all having a peaceful weekend.  Bye for now.

The worm.  x.

That Friday Feeling

Hi Everyone

I am tired tonight.  I think I pack too much into a day - but then, I get restless if I don't have enough to do.  It was Toddler's day off from play school today.  We met one of my friends for a stroll around some scenic gardens and a chat.  Toddler dominated the conversation, of course, as he so often does.  He has so much energy - he reminded me today of the midwife who told me to expend my energy pushing, not shouting, when Second Daughter was being born.  She had a point. 

Likewise I feel that Toddler would be capable of literally anything - his strength is apparent in his wonderful voice.  Constantly.  I think he could even be an Olympic athlete one day - although, drat, he already has bunions; hard to believe on one so young, but his second toes already overlap the big ones, just as mine have always done. I will try to get it sorted with Orthotics as soon as he is old enough, but would never put his

Thursday, 6 October 2011

A new (to me) and interesting (to many, I am sure) Blog

Just glancing at the Beyond Meds site, and noticed this.  Fascinating, I thought, must go and have a proper look later.  So this is a note to myself as much as you guys - take a look (and drop in on Beyond Meds if you haven't yet; I posted a link a few days ago).

Looking Up

Greetings all

Went for a walk on the beach this morning.  This is something that I can only do at certain times of the season, because dogs are banned from most areas of the beach in the summer.  A good thing as far as my monster is concerned; she is far too friendly (and greedy) and would be bouncing everywhere, kicking up sand at the sunbathers (and eating their packed luches). 

It was lovely to be back at the beach.  I mostly walked on the promenade, only venturing onto the sand when toddlers approached and I didn't want the dog to greet them too effusively (she has been known to knock toddlers flying, which is awful, even if she does only want to lick their faces).  It was just nice to be near the sea, in the open air (because our walk most days recently has been far more sheltered).  And when the dog jumps at me, which she does often, to get at her treats, she only covers me with sand.  As opposed to mud, which has been getting really annoying. 

Half the day has gone already - a friend just popped in and we have been talking about schools.  I am afraid I talked her head off. I don't seem to have much awareness of the normal rules of conversation, especially when I get on my hobbyhorse.  Must learn to slow down. 

My blog post is up on the Time to Change site.  Here is the link:

I must go now.  Hope you are all well and happy.

Louise x

Tuesday, 4 October 2011

Quote from Albert Enistein

I just read this and thought it worth repeating.

'Everyone is a genius.  But if you judge a fish on its ability to climb a tree, it will spend its whole life believing it is stupid'.

Albert Einstein.


The Power of Lists

Hi Everyone

I am learning from my children, more and more, these days.  It is quite incredible, actually, that I have created such astounding little people: so calm, so knowledgeable, so sweet.  Incredible.

Anyway, Little Daughter has taken to writing herself a To Do list before she goes to bed each night.  And I have decided to follow her example.  Obviously, I have made lists before, but I intend to do it on a regular basis, and intead of writing huge tasks, like 'Tidy House' I am going to break it down into small, and more pleasant, chunks.  For example, 'Practise Piano', 'Walk Dog' and 'Write Blog Post'.  Ergo, here I am!  (Next up, 'Hoover').

But what to say, now that I am here?  I am having a good day.  I look reasonable, because the hairdresser came yesterday.  And my feet are (dare I say it?) flourishing. 

Interestingly, I just read an article in The Times about how 'Fitness Footwear' is not all it is cracked up to be.  And buried in the small print was a little nugget of information about how these 'rocking shoes' are used occasionally to help in the case of mid-foot injuries where the foot won't bend.  'Aha!' I thought.  'Could this be the reason why I took a (metaphorical) step backwards recently?  Were my rocking shoes to blame?' 

Because I did have a pair, which I wore most of the time, and I have changed shoes since the last infection, and (touch wood again) I seem to be healing again now.  Maybe the old shoes were weakening the feet, putting pressure on exactly the wrong spot (although they did feel comfortable). 

Anyway, I have been off the antibiotics for several days now.  The scars on both feet are healed over.  So I am hopeful that over the next few weeks I will grow stronger and can put all the foot stuff behind me (although I am aware that I have said, and written, that before).

I really want to go swimming again.  In fact, I could probably fit it in this afternoon.  But I daren't, not just yet.  I can't risk another infection.  I just want to move on now.

I am finally beginning to feel a little more light-hearted.  It's nice actually, not to have to hide my fears any more.  My daughters were taking the mickey a couple of days ago, talking about me going to hospital.  And I said, 'I wouldn't mind at all going to hospital now.  You would all have to find someone else to clean and cool and do your washing while I am gone though.  And I'm not coming back until the house is clean and tidy!'  They rolled around laughing.

Well, that is half the battle won, isn't it?  If I have no fear of going to hospital, I realised, I am far less likely to get into the state which would mean I am going to be carted off there.  I am what I am these days, and I am really trying hard to not care so much about the past. 

I have finished my latest writing project (quite a success, if I say so myself).  It was a short book, for Kindle again.  I have published under yet another pseudonym, for reasons that are clear to me but hard to explain (mostly to do with protecting the privacy of my children).

And now I am free to embark on another project.  I think that for now though I will try to concentrate on the subject of mental health, both on this blog and further afield.  I was considering editing my book again and then putting it out in paperback, but I don't have the resources just now, in more ways than one.  And anyway, it says what I want it to say, that there is hope out there.  It is worth a read.  So I will just keep promoting it.  

Anyone who has not yet read 'Schizophrenia at the Schoolgate:  A Tale of Sound and Fury' by Louise Gillett, do go ahead and buy a copy from Amazon Kindle.  It's all about how I had three nervous breakdowns, and maybe a bit about why I did, and then some more about how life is actually pretty good now, if only I can keep on ignoring the fact that the word 'Schizophrenic' is writ large in my medical records.

Because I am really no madder than the average person, and nor, Dear Reader, are you.

More anon.

Louise x