Sunday, 30 December 2012

Psychology Exam Looms

I have a psychology exam in ten days' time - and thank goodness, I have finally started on my revision.  I don't know what was up with me until now, but luckily a conversation with a friend on the phone today helped snap me out of my apathetic and helpless attitude. 

My friend had asked how my studies were going, and I replied that I didn't know what was wrong with me, but that I couldn't seem to get interested in the exam.  I told her that I would only sit the exam if I felt prepared - I don't need another qualification at this stage in my life, and there would be no point taking it unless I started to revise soon.   She listened sympathetically. 

I then asked how her studies were going.  She is studying at a more advanced level than me - she already has a psychology degree, and now is going down the counselling route, with a view to getting a doctorate in counselling psychology (I think).  She has all sorts of projects going on, actually. 

My friend told me her studies were going well.  She is tackling them methodically, while making sure that her child has not been neglected over the holiday period.

I put down the phone feeling encouraged, although nothing had been said to make me feel that way.  I just thought, here I am, in the first year of an A level course (if I pass this year I will gain an AS qualification).  It's not actually that hard.  I enjoy the weekly lessons very much.  But, by not putting any effort into learning the material, I am ruling myself out of even taking an exam that I have enrolled for and paid for.  I have enjoyed studying the material over the last few months.  So why on earth not make the final push to learn it properly, and give the exam the best I can?  Who would that help?  Who would it hinder not to do the work?

Apart from anything else, if I don't get on with it, I will be setting a very bad example to my daughters.  So I am pleased and relieved to say that this afternoon I have spent an hour and a half poring over my revision book, making copious notes.  I have a way to go but I am confident that, now I have started, the only way is up.

I just hope I have left myself enough time!

Tuesday, 25 December 2012

Happy Christmas!

I know, I know...what am I doing on the computer on Christmas morning?

I just quickly wanted to say Happy Christmas, or other Festive Greetings as appropriate!

Louise x

Thursday, 20 December 2012

Literature as Therapy

I have been reading 'The Help' by Kathryn Stockett, and am finding it very hard to put down.  I liked 'Beloved' by Toni Morrison, and have read another book this year on the same subject - slavery or the period just post-slavery in the deep South - which was also brilliant, although I can't think of the name of it just now.  I will amend this post to include it when I remember.

I usually only have the time (or allow myself to have the time) to read much fiction when I am feeling under the weather.  This time though, I am not poorly - but the kids have been, all of them in turn.  It has been exhausting - emotionally as much as anything else.  I find it so hard when they are ill, and this has been quite a bad virus.  They've had very high temperatures, coughs and colds, aches and pains, been off their food...  Flu symptoms really, but thank goodness it has not been as long lived as proper flu.  I feel like it has been going on for ever, but the first one to get ill was last Wednesday, and all four were finally back at school this morning.  Fingers crossed, we are more or less through it now. 

Anyway, yesterday I was starting to feel quite drained.  I did some Christmas shopping at the weekend, anticipating being stuck indoors again this week.  And I knew Paul could always buy the food and gifts we needed, or I could go out in the evenings when he got home from work, so I wasn't panicking too much about the festive stuff.  But I haven't been able to leave the house much, even to walk the dog, and I think that the lack of exercise, the disturbed nights and the stress of it all was starting to get to me.  I needed some sort of therapy.

So I picked up my book group book of this month - The Help - and got stuck in.  It was no effort of course, as it never is with the best books.  This one is a page turner - and it was such a relief to be immersed in another world, one that doesn't involve Nurofen or Calpol or cool flannels or hot water bottles..  Not that the alternative world of black people in 1960s Mississippi was any easier - but goodness, it made me feel grateful for what I have, and for what I don't have to put up with.

I am half way through the book already, which is a lot of reading for me.  I read for at least three hours most days, but almost all of that is on the net - I even read the newspapers on the net now, except at the weekend when I treat myself to paper copies.  Apart from the newspapers I mostly read about mental health - whatever is on Mad in America, and other blogs as and when I find the time.  It is reading for pleasure, in a way - I find it all very interesting so I don't feel that it is a chore - but it's not nearly as relaxing as reading fiction. 

I feel a New Year's resolution coming on - to read more fiction.  I make a lot of New Year's resolutions, I enjoy the process for some reason.   Most years the resolutions are all more or less the same - which is to say, I suppose, that I don't often see them through.  But this will be a new one, and I will try to prioritise it. 

Other books I am reading at the moment include 'Selfhood' by Terry Lynch and 'The Divided Self' by RD Laing.  Which is part of the reason why I turned to fiction this week.  It is all very well taking an interest in mental health, but sometimes I feel that it is in danger of becoming an obsession - and that paradoxically, too much learning about it all does my head in! 

Balance, as ever, remains key.  I'm going to start yoga in the New Year too.  Ommm....   

Saturday, 15 December 2012

'It's all very iffy, this diagnosis business'

Quote of the year - from the professor of psychiatry at the University of Toronto, Dr Gordon Warme, - 'It's all very iffy, this diagnosis business'.


Thirty years ago, he was taught by the psychiatrist (and icon) Karl Menninger that, 'Calling somebody a schizophrenic is no different from calling somebody a nigger'.  Again, a point that I have been trying to make - I am astounded how many seemingly rational people apparently think 'Schizophrenic' is an appropriate and/or helpful term. 

I'm going to put Dr Warme's book - 'Daggers of the Mind: Psychiatry and the Myth of Mental Disease' on my Christmas list.  (Which means I will buy it for myself).

Below is the link to the YouTube video - less than 2 minutes long.  It's definitely worth the time, to hear such an eminently sensible man speak!

Thursday, 13 December 2012

Myself, interviewed at Newcastle Uni by Tom Feltham

Below is a link to an interview carried out by Tom Feltham (a science kid) at Newcastle Uni, when I was up for the 'Reassembing the Self' exhibition in October.  I have never been interviewed before, and so I am quite pleased with the way this turned out.   Thanks are due to Tom:

Friday, 7 December 2012

Bournemouth University

It's only two months since I last attended an event at Bournemouth University.  And yet, chatting with some other attendees before the talk last night about Early Intervention in Psychosis, I had already forgotten what the last talk was about.  It does not bode well for my upcoming exam.  Anyway, I have remembered now - the last talk, of course, was called 'What's in a Name?' and it was about labelling - aka diagnosis. 

Well, we have not got very far with that particular mission.  (Boo, Schizophrenia Commission!)  But let's keep on keeping on...

This talk was by another mental health nurse, and featured a case study.  It was interesting the way that the case study was used to illustrate the various points that the speaker made.  I made a lot of notes about what he was saying, and I only wish that he had left the slides up longer so that my notes would have been more complete - my handwriting is not very speedy these days. 

I think the speaker assumed that most of the audience would already have a working knowledge of the subject.  There were attendees from across the country, although most of them were local, and they were a mixture of mental health professionals and students (and the odd 'service-user' - horrid expression).  The talk was put on by the local branch of the British Psychological Society.

The nurse spoke about Psycho-Social Intervention (PSI).  His slides often mentioned that PSI should be used as an alternative to medication, or in addition to it, but when he spoke about the practice of it, it always seemed to be as well as, not instead of, medication.  This confused me a little - but then I realised that as a mental health nurse he has probably never tried not to use medication - it is still the first port of call of psychiary - and so he probably didn't even notice that the proponents of PSI (I understand that it is the brainchild of Alison Brabban but I could be wrong here)  mentioned its potential as an alternative.  Hopefully, that will seep in eventually.  

Anyway, I won't go too much into the talk, only to say that it was delivered articulately and with humour.  The only hope for the mental health system is that the practitioners are compassionate - and I felt encouraged by the fact that there are people working locally who understand this fact, and who are trying to teach it to the students who will soon qualify to work in the system.

Actually, everyone I met last night was kind and interesting.  The food was good too - there was a giant and delicious fruit platter as well as various sandwiches, other snacks and lots to drink.  (Did you need to know that?) 

I had already been introduced to the faculty members by my Psychology tutor, so they were expecting me last night, and made me feel very welcome.  Which was good, because I had gone on my own, which made me feel like a bit of a Billy No-Mates (most of my mates are either Mums or working or both and my ultimate mate - Paul - was of course looking after our kids).  So it was nice to find people so easy to chat to. 

I suppose psychologists are usually friendly, it is the sort of trade that attracts caring people.  I felt a bit guilty, because while talking to one lovely lady - and it was a fascinating conversation on my favourite subject, children - I kept looking over her shoulder, to the point that eventually she turned to see what I was staring at.  I was too embarrassed to admit that I was trying to keep an eye on my handbag!

In any case, the upshot of it all was that I have now been invited to give a British Psychological Society talk at Bournemouth University early next year, so I am looking forward to that, and to further contact with the nice people who work there!

Saturday, 1 December 2012

Rethink Your Mind Competition

I really, really want to win this competition:

The prize is an iPad (I've coveted one of these for a while) and the prize-giving ceremony is at the House of Lords, in the 'Cholmondeley Room'.  (For those who are not familiar with the vagaries of the English language, you pronouce this word 'Chumley'.)  I want to go there!!!

And, by the way, another odd word - 'Featherstonehaugh' is pronounced 'Fanshawe'.  The unusual things I know (and don't know how I know)...  Those are the only two, actually.

Anyway, I cannot in good conscience keep this competition to myself - so feel free to enter, everyone, and spread the word yourselves. 

Good Luck.

May the best person win. 

(Best people - there will be six winners).

Ohio University Resilience Study

A month or so ago I was contacted through my Facebook page by Suzanne Beachy. Suzanne happens to be a role model of mine - I watched this TED talk a while ago and was truly inspired by her humanity.  So when she asked me to participate in a Ohio University study about recovery from mental illness, I jumped at the chance.

Suzanne put me in touch with Professor Mo Yee Lee, of the social work faculty at Ohio.  After I'd signed the relevant forms, and we'd communicated briefly via email,  Mo Yee called me yesterday, and interviewed me for an hour on the phone.  She is conducting a resilience study - interviewing people with diagnoses of schizophrenia, bi-polar and schizo-affective disorder, who have been free of medication for at least twelve months, and who consider themselves to have recovered from mental illness, to see what she can discover about factors for resilience and to try to help others in their recovery. 

Mo Yee seemed like a lovely person - it felt like I was chatting to a friend on the phone, and the hour whizzed by.  Of course, recovery is something I have given a lot of thought to in the last year or so, and I enjoyed the opportunity to share my opinions.  The professor asked me to rate certain things - such as what had and had not been helpful in my recovery - on a scale of one to ten.  She asked extensively about what had helped me, often asking if there was anything else I could think of, and I did my best to rack my brains. 

I had to be honest and admit that what has helped me most is my children - although I am conscious that children may not be an option for everyone.   I know that I have been incredibly lucky to be blessed in this way - and also I realise that I always longed to be a mother and this is why I have found it so fulfilling.  Motherhood is not everyone's cup of tea, and neither is it a walk in the park!  (Two cliches for the price of one, anybody?)

Most of the factors that are important for recovery are well known - I am not the only person to have benefitted from a healthy diet, exercise, writing, mindfulness and so on, and the study reflected this.  The only time I think I may have surprised Professor Lee was when I suggested pet therapy - and canine therapy in particular.  I think that those of us who are lucky to have a dog to look after, to walk and to love, and to be adored by in return - who experience the two-directional power of unconditional love - know well how therapeutic that is. 

Anyway, that's about it for now.  It's been a good day - a long walk, time playing with the kids, friends to talk to - and now a quiet evening (children asleep in bed) in which to relax and savour the good things in life. 

Wednesday, 28 November 2012

Celebrity - no thanks!

I watched a podcast (I am not sure if that is the right word) last night.  It was of Caitlin Moran speaking to David Aaronvitch, about her book 'How to be a Woman'.

Here's the link:
You can click on the 'Watch Caitlin' button at the top to see it.  It's definitely worth looking at - although it is an hour and forty minutes long.  Look at it as an evening's entertainment.

She said she gets two thousand tweets a day from people she doesn't know, and that is why she doesn't reply to them - which made me squirm with embarrassment, as I tweeted her a few weeks ago.  She had written about schizophrenia in The Times Saturday magazine, so I wanted to point her to this blog, and others, which she might have found informative.

But of course, Caitlin Moran doesn't have time for mental health - or only as a passing topic.  It is not her specialist subject, it is mine (and not exclusively mine, obviously).   During this talk Caitlin asked why there are not more people with specialist interests writing columns - who better to write a column about being on benefits, for example, than someone who is?

Well, apart from the fact that if you had a column about being on benefits you would get paid for it and therefore not be on benefits any more, it is just not that easy to get a column.  Caitlin is obviously talented, but her success owes something to luck - or fate - too, and as she said nowadays it would be almost impossible for a working class person to break into top-level journalism as she did.

But maybe I should pitch a mental health column to The Times.  Who knows..?

Watching the podcast (?) gave me much pause for thought.  There were apparently one thousand people in the audience, and I am pretty sure that a lot of them were aspiring writers, or aspiring celebrity writers.  What I mean is, they looked like media types, or other sorts of professional people, and I am sure because of the nature of the event (an author talk) that plenty of the audience were hoping to learn something about how to take a similar path to Caitlin Moran - the path to success.  I have been to a few author talks over the years, and there are always a good smattering of aspiring writers in the audience.

What I am trying to say is - it is almost impossible to learn how to break through.  Apart from writing and writing (and it's surprising how many aspiring writers - probably the majority - neglect to put pen to paper very often at all) - we have little control over how successful our books will be.  A lot of it is down to marketing, being in the right place at the right time, and so on.  Caitlin slogged for twenty years before reaching her current dizzy heights of fame.  I reckon that's about an average length of time. 

And anyway, after watching the (film thing) I am not sure if I aspire to celebrity at all.  I don't think I have the stamina.  Caitlin has a huge fan base, but she has some detractors too, and she was defending herself against some of them (eg the people who complain that she only communicates with other celebrities on Twitter).  I don't think I would like to live under that degree of scrutiny.

I would like to be recognised for my writing, though.  Each time I get a good review of my book it makes me so excessively happy - I know I am a writer now, but confirmation of that fact will always be sweet.  I entered a memoir writing competition a while ago; the prize is publication by Hodder, and I can't help but hope...

But if I don't ever get an agent or a proper publisher, I don't think I would despair, as long as I could continue to write and to earn a small income from it.  We have everything we need in our little home - it's warm and dry, and best of all there's plenty of love.  I just cribbed that line from a children's book called 'Little Kitten Gets Lost' or something like that - but it fits, it really does.  There are some things that money can buy and some that it can't, but in certain circumstances fame can be a spoiler, I'm sure of it. 

Now I'm going to get on and pitch that column.

Sunday, 25 November 2012

Woolly Weekend

I've been trying to practice mindfulness recently - it's not easy to keep pulling your thoughts back to the present moment, especially if, like me, you have formed lifelong habits of worrying and daydreaming.  During my recent transformative sessions of CBT I learned about the power of thought - how strongly your thoughts influence your emotions and therefore how important it is to keep them positive -  but I do keep slipping back.

I've had a bit of a 'woolly weekend' - it's my head that's been woolly.  I had a sore throat at the end of last week that turned into a cold.  Frequently I have found myself thinking about the likelihood of some or all of the children catching this cold, and wondering how ill they'll become, how much time they'll have to take off school, how I'll cope...  Then I have to pull myself up and realise how thinking this way drags me down.  At least I realise when I'm doing it now.

When I'm not feeling so well physically I often get a bit glum and muddled mentally - I am sure that's the same for everyone.  By the end of Saturday I ended up in quite a state.  I spent several hours in the morning helping at the school Christmas Fair, which I found quite draining.  Then I took my Mum to the shops - again because I felt I should, although I was not really up to it and did not really want to.  There was so much traffic and so many people around, and by the time I got home I just felt close to collapse.  Luckily for me, Paul had cooked a meal, and after eating with the family and  having a quiet evening in front of the TV things were much improved.

I had a quiet morning at home today, then this afternoon I took three of my children and one of their friends to see Skyfall, the new Bond film.  I've already seen it - Paul took me on my birthday - but I didn't mind going again (I'm noble like that).  I made myself pretty unpopular at the cinema, handing out packs of crisps and popcorn to all the kids.  I never intend to choose the noisiest snacks, it just always seems to happen that way.  Anyway, it was a good way to spend a wet afternoon.

So the most energetic thing I have done today is to brush the dog (it's been too long since the last time) and trim her fur.  She loved all the attention, sweet little thing that she is.  Now I'm going to get an early night, and hopefully by tomorrow morning my thoughts will be less woolly - ideally not woolly at all. 

Friday, 23 November 2012

Wild Comments

Houston, I have a problem...

While trying to do two things at the same time (straighten out a babysitting situation with a friend and publish a recent comment on this blog) I made a major mistake.  I somehow published ten unmoderated comments, instead of the one I had been intending.  Aargh!  I am short of time this morning, but have just spent half an hour looking for the errant comments, and only found one of them (it was the most important one, somebody had sent me her private email address, so I took that off straightaway).

The others had remained unpublished either because they were from friends, or because they were abusive, or they were spam.   So, now there are some  unpleasant or unecessary remarks under some of the blog posts, for which I apologise.  The trouble is that there are so many blog posts, and so many comments attached to them, that it is like looking for a needle in a haystack.  I have a list of all the published comments, but it is eight pages long, and although I looked carefully, somehow quite a few seem to have slipped under the radar. 

Sorry, again.  Please let me know, anybody who sees anything they don't think should be there.  I will have another thorough look this evening.

Wednesday, 21 November 2012

Progress of the Hall

Since writing yesterday's post I have been worrying, in case anybody thought after reading it that I must be losing the plot, or that I had lost all sense of gravitas, nattering on about the decorating.  Although long-term readers of this blog will know that it does drift around to various subjects, it has mainly been purely on mental health issues recently. 

The truth is, that writing and thinking about mental health too much wears me down.  So I don't do it all of the time.  Although I don't seem to be able to get off the subject for long.  But then sometimes I feel that although mental health is not particularly on my mind but I should write a blog post - that the blog would benefit from being updated - and that is when I seem to go off on a tangent, blogging about how I have just walked the dog, or am going to clean and reorganise the house (again) or decorate the hallway...

I am starting to think that I might need a new blog, as a creative outlet for my frivolous days. I might just do that.

Anyway, the hall is not quite finished yet.  Tonight the noticeboard has gone back up, and very nice it looks too, IMO.  Hopefully, the pegs will also go up this evening, so I will have somewhere to hang the coats, which are currently the bane of my life, floating about between the porch and the conservatory, unsure where is home.  The laundry basket has been moved out of the front room, which can only be an improvement.  And...oh, there I go again, sinking into urbane domesticity.  STOP!

I went to Psychology today (the second class this week; we have ground to cover before the looming exam).  And I am proud to say that I have already completed my homework - after getting about three weeks behind and starting to feel pretty panicky until I caught up the other day, I have decided to stay in front from now on.  I do feel pleased with myself, especially since I have also been working on my ghost-writing today and now that is all done too.  Smug, I think is the word to express how I feel.

I may even find some time in the next few days to finish the short story I started at the weekend.  It was inspired by a recent encounter in a supermarket (such are the parameters of my life) and it has given me lots of ideas for other stories.  I can't help feeling that short stories are a cop-out and that I should really be in it for the long haul - but they are fun, and that is what matters.

Meanwhile, some time ago I offered to help Rethink Mental Illness, as a volunteer on their physical health forum.  I have waited a while for a response to this, and the volunteering opportunity has now changed - apparently there are four volunteers and the intention is that a contact at Rethink will feed us snippets of information which we will then disseminate via social media.  Their physical health campaign is centred around the tragic fact that people with a serious mental illness die on average many years younger than the general population.  So this is what we will be seeking to address.

Hopefully, this voluntary work will tie in with my paid work for Newcastle Uni, and one will inform the other.  I am not sure how it will all happen yet, but I have faith that happen it will.  Watch this space! 

Tuesday, 20 November 2012

Life, love, laughter

This is going to be an odd sort of a blog post - I know that, even though I haven't written it yet.  How can I tell?  By the title.  Duh.

I feel like writing something positive and upbeat.  I have started reading the 'Selfhood' book by Dr Terry Lynch.  I am not very far in at all, so I can't comment yet on the quality or content of the book.  It has done me good already though, just to know that this sort of a book exists - that there are people who are interested in helping other people, 'even' so-called 'schizophrenics' and others with serious mental health problems, towards a better life, and who don't think that they should be written off.

I was just reading an old issue of the Sunday Times Style magazine, which I had somehow not read but not yet thrown away.  And there were some recommendations for other books in there, that I have noted - The Yellow World, by Albert Espinosa, and Breakthrough by David Carter.  I will get those at some point.  I do like a self-help book!

Paul has been busy non-stop since Saturday morning, stripping, sanding, filling and painting.  He worked all through the weekend on the hall, and in the evening after he comes home from work as soon as he has eaten his dinner, he carries on.  I like this new, energetic husband. 

He's working very fast.  The hall is now getting its second coat of paint - the radiator should be back on the wall tonight, and so should my massive notice board.  I am not sure what colour the walls are - it is a pot of paint that he has collected at some time (have I ever mentioned that my husband is a hoarder?)   It seems like a nice enough colour - light and bright, much better than the garish yellow that has been the hall decor for the last few years - and goodbye to that horrid old thick textured wallpaper that we have been painting over since we moved here eleven and a half years ago (how long?!) 

I love my notice board, it is one of my favourite things.  It is not much use, because it is usually so weighted down by sundry bits of paper that I can never find/see the information I want.  But I love it because it reminds me of how full my life is now, and how lucky I am that I have to find time for all this stuff that the pieces of paper are supposed to remind me to do.  Most of them are from the schools.  But I don't mind that my social life consists of children's parties, school fayres and Christmas carol concerts.  What on earth else could I do with my time that would give me half as much satisfaction?

Since the board came off the wall I have taken off a lot of the extraenous paperwork, and now it looks immaculate and orderly.  I am going to get some new pens tomorrow, and keep some space free on the board for scribbling and doodling.

I have moved my desk, which was in the hallway, into my bedroom, where it fits in fine, and makes me feel more organised already.  The next step is to actually do some organising.  I have too much paperwork in and around the bedroom, but I feel that now I have a place to keep it all, things will improve. 

I am also going to think of some ways to improve the hall area, rather than just move everything back into the original positions.  The desk will stay here, so I am thinking of using that space to maybe put a cupboard, or at least some shelves, for storage.  The notice board will go on a different wall.  The possibilities are endless!

Youngest son (note, not Toddler any more!) had his first friend back from school today.  They had an absolute riot, played non-stop, and the noise got louder and louder...  It was nice to see him so excited and happy.  Although, come to think of it, he is permanently excited and happy.

Long may it last!

Anyway, apologies for banging on about the hallway.  I did warn you at the outset that this was going to be an odd blog post.  Just be grateful I haven't figured out how to upload pictures of the hall yet...  I may do that, and then put them on here. 

If I do it quickly enough, you might be able to watch the paint dry. 


Saturday, 17 November 2012

Health and Wellbeing Boards, and ImROC

I received a question on the comment section of my last blog post - I was asked what Health and Wellbeing Boards are, and what is the concept of public health all about?  It was one of those jolly good questions which focus the mind - I had been meaning to update the last post anyway because I knew it lacked clarity, but now I will just write a new one instead.

Here, in a bit of a cop-out, is a link to the Department of Health page about the new Health and Wellbeing Boards, which will take on their responsibilites from April 2013:

And here is a link to some information about ImROC (which is a project to help services focus on recovery within mental health treatment):

Basically, insitutional change is afoot in the mental health system - hurray!  And, in my opinion, those of us with an interest in such matters should try to get involved to ensure that real change takes place on the ground.  This is our opportunity.  The Boards do not have to accept service-user input, but almost certainly will do so - if approached properly and politely (note to self- behave nicely!). Certainly judging by the fact that I was allowed to join the ImROC webinar and that my questions during it were taken seriously, I would say that people with lived experience who can suggest improvements to the current system will be welcomed. 

I say it is a bit of a cop-out just to provide links to the relevant pages, because I would like to digest and rephrase all of the information they provide as clearly as possible, but I just don't have the time today.

However, all the necessary information is on those pages, and more can be discovered by following the links on them.  As for public health, in answer to the same comment, the definition I have found is that it relates to the protection and improvement of the health of communities through education, promotion of healthy lifestyles and research to prevent disease and injury.

Because I was away from my family last weekend, I am playing catch-up now.  I am determined to spend more time with the kids (trying to only work while they are at school or asleep).  Although I am on the computer right now, my excuse is that I am also in the kitchen cooking dinner (slightly late for us, but Younger Daughter made a lot of chocolate cakes this morning, which have warded off everybody's hunger pangs for a little longer than usual this afternoon). 

I have decided to try to sort out the house properly before Christmas - I know the chaos will always creep back, but I just think if for once I can have all areas properly orgnanised at the same time it will be easier to keep it in check.  Plus, I have to find some space to accommodate all the new Christmas gifts that the children are about to accumulate.  Visitors to my home always say that it is clean and tidy and can't see why I should think otherwise - but I know what needs to be done, and it is pretty much constant.  I am sure that with more organisation I could simplify things, and cut down on the amount of housework that needs doing - but it may well be impossible, as Paul always states. 

On the bright side, both the girls now keep their bedrooms wonderfully neat, so that is two less rooms for me to tackle. 

Paul suddenly decided to re-decorate the hall this morning (a surprise for me - he went out for a drink with a mate last night and usually the last thing he wants to do the 'morning after' is anything that involves any sort of action at all).   So real disorder reigns today - but I am hoping against hope that he will get the whole thing done by Monday morning, so that the upheaval does not continue into next week.    

I will let you know what happens there...

Thursday, 15 November 2012

ImROC Webinar

I just attended my first 'Webinar' - strictly speaking, I virtually attended it.  It was called, 'Public Mental Health, Wellbeing and Recovery' and was hosted by ImROC - you will have to look that up.  It's an official organisation but I am not the best person to explain what they do - there has recently been a paper published on the subject of this webinar apparently, which I felt I should have read before the webinar (and would have done if I'd known about it).  I stumbled across a notice about the Webinar on Twitter and asked to join it.  I had heard about ImROC through my short-lived engagement with the Dorset Mental Health Forum.  Apparently they will be publishing a new paper soon on Peer Support and another on Carers, and once I am up to speed with all this I will provide a link to their publications here (and advance notice of any more webinars, so that anyone else interested can join in).   

I enjoyed the webinar experience and understand a little more now about the official attitudes to public mental health, recovery and the establishment of the new Health and Wellbeing Boards.  I may even try to wheedle my way onto one of these boards - apparently they welcome service-user input. 

The trouble is though, I am a bit of an agitator (unfortunately sometimes it is necessary to agitate in order to effect change).  I don't mean to offend anyone, but I do like to be able to speak freely.  Which is why although it is a shame in some ways that I don't now work for the Forum (especially as they are partners in the local NHS trust and therefore all local peer support workers seem to have to be channelled through them) it is probably for the best that I operate independently.  I am not on bad terms with the Forum, and hopefully we can work together in the future.

Having stated on here that I was asked to alter my case study for the Schizophrenia Commission report, I opened a can of worms, because obviously it is unethical to ask someone for a case study, then try to remove from it the crucial point that they are trying to make (about diagnosis).  Although on the scale of corruption, this was a pretty innocuous offence - especially since when I said 'No' to its removal, they consequently included the offending line in the case study.  It's on page 64 of the report, by the way (link below).  My first name was attributed, not my full name.  I notice that another case study has also mentioned the adverse and unhelpful effect of the word 'schizophrenia', so I'm not alone (although I never thought I was).

As it turns out, the recommendation of the report re. the diagnosis is laughable - that clinicians should think carefully before giving the diagnosis, because of the stigma and sense of disablement it produces (they didn't say disablement, I forget the actual word they used).  I mean, they know that already, and yet they still ruin people's lives with this label.  If the label wasn't an option, that could only be a vast improvement.

Link to the SC report:

I am still working my way through the report - have not yet found anything in there that I didn't already know.  In fact, I have been considering writing an 'alternative report' just for a laugh - but I am worried that it would take too long (must do that Psychology homework this week!) and that any humour I might try to inject might not end up being particularly funny. 

I suppose the mention of Recovery Houses in the report is good - especially if these would be used as alternatives to hospital treatment, not just for recuperation afterwards.  Any alternative to hospital treatment under the present system could only be a good thing.

My hackles were raised when I got to the section in the report on medication.  I try not to write too much about this issue - although I know for a fact that I would not have recovered as well as I have, if I was still on antipsychotic drugs.  However, I recognise that this is a sensitive issue - many people try to stop their drugs and break down as a result, and nobody wants to feel responsible for the breakdown of another human being. 

I know many people see their drugs as a necessity, and don't mind taking them, despite the side-effects.  Each to his own.  But I think that more help should be given for people who wish to stop taking them.  I was lucky - each time I had recovered from a breakdown, I was helped by a medical professional to slowly wean myself off the medication.  I am grateful for this - even though after my second breakdown it was not the mental health professionals who helped (more of this in my book,  don't want to keep bleating over old ground).

Now, what the report says is that antipsychotics are 'the cornerstone of treatment' - that when people were asked - 'What is the single most effective support for those with schizophrenia or psychosis?' they said medication.  But surely - surely - this is because there are all too often no alternatives - drugs are the only support offered!

Here's a link to a You Tube video about antipsychotics.  It's not long, but it's a real eye-opener:

To sum up - I think more people should be helped to recover from emotional distress (aka mental illness).  There are lots of ways of doing this, so let's try to explore them all.  And let's not use the word schizophrenia any more - let's let it die out, just as the old terminology of 'lunatics' and 'lunacy' has done.  Let's allow common decency to replace it with kinder words, since the Schizophrenia Commission have failed to do so.  (Thanks to Kate Hudson of Newcastle Uni for that thought.  It has given me hope).

I suppose really I should re-name this blog - 'Thoughts from the Thought-Disordered' or some such.  But then how would it reach the people who might be helped by it?  I am almost certainly going to re-name my memoir soon though, with the word 'Schizophrenia' edited out - so please, take care not to buy it twice, anybody who already has a copy!

Incidentally, I wrote this blog post against the clock.  I hope it's all clearly enough expressed - if not, my rush is the reason/excuse.

Tuesday, 13 November 2012

Schizophrenia Commission Report out Tomorrow

I had a Direct Message on Twitter yesterday from the Schizophrenia Commission - thanking me for my blog and telling me that there had been differing views on the diagnosis within the Commission. Which I thought was rather polite of them, considering my slightly uncouth behaviour ('dissing' them on Twitter recently).

 I also received an email yesterday, telling me that my case study has been used in the Commission Report, and attributed to me by name, as with the case studies they had requested from others.  Also, apparently, there has been a recommendation about the diagnosis in the report, although 'not as strong as you would like'.  And apparently, when the report is released there will be information about where we can continue the debate.

I considered being churlish and refusing to engage in any further debate.  But that would, in effect, amount to cutting off my nose to spite my face.  So, I look forward to reading the full report tomorrow - although I am still mightily offended by the failure of the Commission to recommend a change of name for the diagnosis, and baffled by how on earth they could have thought that this was a fair and reasonable course of action. 

Monday, 12 November 2012

Paula Caplan

Below is a link to a ten minute video - it is well worth a watch:

The video was posted on YouTube by Paula Caplan, an eminent American psychologist.  It is about the harm done by psychiatric diagnosis - 'portrayed as scientific, helpful and harmless' when it is completely the reverse.  At the end of the video she gives links to further sources of information and ways to take action.

Sunday, 11 November 2012

Rethink Mental Illness National Members' Day 2012

I returned quite late last night from Nottingham.  I had travelled up with my friend on Friday night, and we had stayed overnight at a hotel in preparation for the Rethink Mental Illness Members Day on the Saturday.  I had fond memories of this event from last year, when it was held at the Russell Hotel in London.  My friend, incidentally, is a Trustee of the charity - I won't divulge her name here as I don't know whether she would appreciate that.  Thanks to her, I got to travel up for free (she will get her expenses reimbursed by the charity) and I shared her hotel room for just a small subsidy.

The best part of the whole weekend was - coming home, of course!  I was homesick almost as soon as I left on Friday morning - so just arriving home last night and walking into my bright warm comfortable house, filled with the people who I love so much - was blissful.  My younger daughter had been baking, and presented me with a tray of biscuits, each with an iced letter, spelling out the words, 'Welcome back!'  It was almost worth going away, just to come home.

However, I do wonder what I am doing sometimes, with this mental health activism, and why.  I wonder if it is damaging to me personally.  On a very basic level, I would have had a much more peaceful and relaxing weekend at home, and on a more complex plane, the potential harm done to my social life and career by identifying myself as a person with schizophrenia is possibly quite serious, although not quantifiable in any way.  (The most important factor is of course the possible effect on my children of being identified as the offspring of someone with a diagnosis of schizophrenia).

On the way home, after we had discussed the day's events, my friend suggested that I should write something else for a while - a nice romance, perhaps, or a children's book.  She said she thought it would be better for me.  She may well be right.

The thing is though, that I have no real choice.  I just feel compelled to carry on with this work.  I have never had a career anyway, prior to identifying my vocation as a writer (possibly because of the damage that was done to my psyche by the infliction of the diagnosis in the first place) and I have never been one of those people who is impressed by the social standing of others or who wishes to pretend to be something I am not in order to impress other people.  And I still maintain that my children are more likely to benefit from all this than they are to suffer from it - as long as I remain firmly rooted in the home, loving and nurturing them, and don't get carried away by my wish to improve the mental health system and end up neglecting my own family's needs as a result.

I suffered a major disappointment yesterday - I learned that the Schizophrenia Commission have not recommended that the label be abolished or changed as I had hoped.  (The report is not due to be published until next week but I feel no sense of loyalty that would prevent me from publishing this 'spoiler'). 

I was not actually surprised to find out that the label has not been changed - I suspected as much by the fact that after asking me to write a case study (of my own case) I was asked if I would mind if it was 'tweaked' to reflect the fact that some members of the Commission do not agree with my view of the damage done by the diagnosis of schizophrenia.  After some thought I rejected my instinct towards compliance and wrote back to say that if they did use my case study I would prefer the wording left intact.  They agreed to use the case study as I wrote it, and apparently it has been included in the report (although I think anonymously.  I am not sure, I have not seen it, but one of the other Trustees who I spoke to yesterday dropped a big hint to this effect).  Although of course, it might be removed after I have published this blog post!

So I had an inkling of what the outcome of this report would be - and it was confirmed as soon as I saw the title of Robin Murray's talk at the meeting yesterday - 'What next for the Schizophrenia Commission?'

So the Schizophrenia Commission will continue - having already let down the people they are supposed to be helping.  The parts of the report that Robin Murray disclosed yesterday say nothing that anybody didn't already know - that there are problems in the system and in the use of medication and so on and so forth.  As there always have been.  I listened hard, and I didn't hear anything ground breaking in anything that he said (although I was surprised at the extent of his criticism of mental health nurses, speaking of how they become hardened over time. Of course they do, by having to earn their living in a system that provides so little in the way of care.  He also said that psychiatrists are not as good in private hospitals as in the NHS.  Interesting, that - I wonder why the recovery rates are so much better in private hospitals, in that case.  And I can't help wondering whether, if Robin Murray himself ever became mentally ill, whether he would choose to be treated at the Priory or by his local NHS Trust.  I'm pretty sure I know the answer to that.  Although the head of the Royal College of Psychiatrists just might have a slightly different experience than others in the mental health system).  I am not trying to be bitter and bitchy, by the way.  I just can't help it.  I am deeply disappointed.

I was actually close to tears yesterday on at least two occasions.  The first occasion was when listening to a poem read out by Peter Cox, who won the Pringle Prize for Poetry.  The poem told how it felt to be an outsider from society, about how others' perceptions impacted on his view of himself, how he couldn't even enjoy a sunny summer's day without feeling guilty for his brief happiness.  When Peter was given his prize, he asked humbly if we would like him to read out the poem, and there was hesitation from the award giver and the Board (proceedings were already running late).  Fortunately, several members of the audience filled the gap by calling out 'Yes!' and Peter was allowed to read his work.  That hesitation though, made me feel physically sick.

Later, I almost wept again when I realised that my suspicion that the Schizophrenia Commission had rejected their opportunity to effect any real change for sufferers was true.   Luckily I didn't disgrace myself (or conform to anybody's expectations of volatile behaviour from a 'schizophrenic') by actually crying in public, but it was hard to prevent myself from doing so. 

I know that so many lives could be changed, so easily and simply, by simply changing that word to another term.  Thought disorder - or, if that is not sufficiently 'serious-sounding' for mental health professionals, psychotic disorder syndrome or some such nonsense, as suggested by a member of the audience.  Anything, any change in the name, would reduce the stigma of diagnosis at a single stroke, and would improve the outlook and chances of recovery for sufferers. 

Changing the name would be an act of simple human kindness, and keeping the name is a cruelty.  An unnecessary cruelty, that benefits nobody except the psychiatrists themselves, and the rest of the mental health industry, who consequently get to continue to enjoy their power over other people's lives.  I can't imagine what else their motivation can be. 

I am staggered that they haven't effected the change.  Robin Murray was questioned on the subject by a member of the audience and he couldn't produce a coherent reply - he stuttered and stumbled over the issue, saying there were differing views, even claiming that, 'The Schizophrenia Commission doesn't have the power to say one way or another' (really, Sir Robin?).  Eventually he told us that although the diagnosis had been changed in some countries it wasn't going to happen here at the moment, but that maybe in a few years time, things would be different.

And the cynical part of me was thinking - oh yes, maybe after a few more years of enjoying the power and the glory (and the pay, and the public recognition) of being Chair of the Schizophrenia Commission - maybe when he has milked that for all it's worth - maybe then Robin Murray might get around to changing this damned label and thus alleviating the suffering of all those who have been led to believe they are less than human - that they are schizophenic and therefore 'other' and incapable and powerless and hopeless and helpless.  And helping too the young people who have been recently captured by the mental health system - preventing them from losing their hopes and their lives to the malicious diagnosis of 'schizophrenia'.  A lot of human beings could be spared a lot of suffering from that name change.  But not now. 

Not yet.


Let them eat cake.  

Tuesday, 6 November 2012

Residency at Newcastle University

Whisper it... I may be getting a writer in residence post at Newcastle Uni!  I have been buzzing with ideas, and have been busy this evening running them by various people to see if they hold water. 

I am well aware that I shouldn't count my chickens before they are hatched - and that a public announcement that something may happen is hardly advisable - but, be away with you, superstition!  What will be, will be (or que sera, sera, as I sing to my beautiful little boys at their bedtime). 

I have been singing them the same four bedtime songs for years.  Que sera (or, as they call it, 'The Little Girl Song' is their favourite.  One evening, the littlest one (who was not quite four at the time) superimposed his own lyrics.  I only know one verse, 'Will I be famous, will I be rich?' but he changed the words and sang, 'Will I be pretty, will I be silly?'  Honestly.  The child is supernaturally bright - the other day he wanted me to play with him, and when I replied that I was busy tidying, he said, 'A tidy house brings a tidy mind, that's what I say!'

I was staggered - it is not something I say, and although I know he must have seen it on TV or heard someone else say it, I still think it demonstrates pretty impressive powers of retention. 

(Incidentally, I just found the YouTube clip for the song - very sweet: (although spoiled by the distasteful comment underneath) )

Anyway, I will have to work pretty hard to keep up.  I was looking at the notes for my psychology course the other night, and realised that I need to put in a major amount of work if I am to get through the exam with a decent grade.  So that is going to be my main task over the next couple of weeks - printing up all the powerpoints, writing up my own notes (just useless scribbles at present) making sure I understand and can recall the material.  Exam in January!

Going to listen to Radio 4 'All in the Mind' now.  Great programme.  Tonight the subject (or one of them) is CBT and psychosis.  Here's the link:


Monday, 29 October 2012

A Writing Weekend

I have been lucky recently - I have been out and about to various events connected with writing and with mental health.  I think I have catalogued most of them on recent posts here.  This weekend I attended two writing workshops - one co-ordinated by Cyprus Well and, I think, both run by LitUp

The Cyprus Well event was billled as a networking event for writers in residence, although attendance seemed to be fairly open to all.  The event was free.  It was aimed at those who lead writing groups connected with mental health, and particularly for those who work with people recovering from addiction.  A chap from Vita Nova running it, and he seemed very nice - modest too (he was very down to earth, said he talked from a non-academic viewpoint and you would have been forgiven for thinking he had no qualifications, but it turned out he had taken a degree as a mature student and is now doing an MA).

There were lots of interesting people there - perhaps fourteen attendees in total.  I was really impressed with the venue - Pavilion Dance in Bournemouth  That place must have had a lot of money spent on it recently.  They have really modernised the inside while keeping the outside structure intact, which is wonderful because it is a great old building that deserves to be preserved.  There is also a new modern bistro next door.  The view from the huge windows was of the Lower Gardens, and as I watched a bouncy castle was inflated on the grass below us.  It was a lovely sunny day, fresh and clear, and I couldn't help thinking of my kids, who would have loved to be with me in Bournemouth.  I hate taking myself away from them at the weekend.

I was pleased I went, though.  We talked about various ways of running writing workshops, different ice-breakers and exercises (one lady pointed out that we should use the word activity rather than exercise, so as not to intimidate those people who don't want to be reminded of their schooldays).   I met somebody called Tania Hershman, who is a writer in residence at Bristol University in the Science department.  Aha, I thought - I could learn a lot here (I am thinking of the opportunities which I hope will soon present themself from Newcastle).  I chatted briefly to Tania and gave her a copy of my book, although I have told myself  I should not keep giving them away - but in return she very kindly gave me a copy of hers 'My Mother was an Upright Piano'.  A real book - in exchange for mine!  It's fab - a book of really short stories, very original and striking.

Now I really do hate taking myself away from the kids at the weekend - and I realise it sounds quite contradictory that I attended two workshops on one weekend.  What can I say - it's like buses (and men, according to Wendy Cope) - they all come at once.  The Saturday event had only been for a couple of hours in the morning, but the Sunday one ran from ten until four pm.  It only cost five pounds (it would have been more but you got a discount if you attended more than one event). 

And it was really good too - although there were only four of us so the atmosphere was not as dynamic, the teacher was fine (John Foster, a tutor from the Media School at Bournemouth Universtiy) and he gave us lots of useful handouts to take away.  It is always good to be in the company of other writers, and I feel privileged to have been able to take part.  Although I now have plenty of domestic weekends ahead (no jaunts planned at all now) I am sure the double injection of motivation will help keep me writing more regularly from now on.  Thanks to Cyprus Well and to LitUp - and to Tania Hershmann for her lovely book!

Thursday, 25 October 2012

Thoughts on Thought Disorders

Just found this excellent podcast

Actually, I have not listened to the podcast myself yet, just read the excerpted chapter, from the book 'Hallucinations', which was wonderful.  I particularly liked the non-judgemental way in which the hearing voice phenomenom was discussed. 

I don't hear voices, and have only had the experience twice, shortly after I was out of hospital after my second breakdown, when I was taking a lot of psychiatric medication.  It was incredible how real the voice sounded.  It was my mother's voice, and I spun around both times, convinced that she was standing by my side, talking in my ear. 

Incidentally, it is unusual to be diagnosed with schizophrenia if one does not hear voices (as the above article states). 

But I do experience a fair amount of internal dialogue.  That is to say, I think a lot.  Not knowing how other people think, I have sometimes wondered whether my thought patterns are normal.  For example, generally I just have a milling around of ideas in my brain, some of which I follow through and think about more deeply and others which are just passing through.  But I remember on one occasion, when I was pregnant with my younger daughter, I was sitting down somewhere in town, speaking to another Mum.  I was enjoying the conversation, but not ecstatically, so when suddenly a thought manifested, 'This is fun!' it surprised and slightly alarmed me.  It was the suddenness of the thought that shocked - it was in my own voice - but the thought seemed to have come from nowhere, in the middle of an ordinary conversation.  It was not my usual pattern of thinking. 

And obviously when I was psychotic, my thoughts were so disturbed that very little of my thinking was normal.  I do occasionally wonder whether this was a separate phenomenon, because I was mentally ill, or whether all my thinking is 'wrong' but I somehow manage to function most of the time despite that fact.  I don't suppose I will ever know, or that it matters much, as long as I stay sane.

Well, having read the above article, it is obvious that all sorts of thinking patterns are normal - in that quite sizeable chunks of the population hear external voices, others have internal voices and so on, and that there are many different ways in which people organise their thoughts, or their subconscious organises the thoughts for them. 

A lot of the time my mind is busy, but I don't always pay attention to my thoughts.  This was especially the case when I was at school - my mind used to drift off all over the place, and I often found it hard to concentrate in class because I would drift off into daydreams.  I take more notice of my thoughts nowadays, because often a random thought will give me an idea for a story, or a blog post, and I so I like to catch those ideas (often I note them down on my phone).

I wonder how many others who have, or have had, thought disorders (my new term of choice for 'schizophrenia') were very shy, or suffered social anxiety when they were young.  I used to find it extremely hard - almost impossible - to verbalise my thoughts.  This was especially so in social situations - I can remember as a teenager sitting at the pub with my boyfriend and his friends, longing to join in the conversation and knowing just the right thing to say but finding it impossible to speak out.  I was paralysed by fear. 

I also remember when I was very young - four or five - when adults spoke to me I would just gaze at them, answering in my head but unable to say the words out loud.  I had to speak sometimes, because I was so scared of my father and he insisted that I talk, but I think left to my own devices I would have been an 'selective mute'.  (Selective mutism is a very interesting condition which affects children; they can usually talk to their parents and other children but to literally no other adults - I suspect that, as in my case, it is fear that holds them back.) 

I have gone the opposite way in recent years - I talk rather too much and say things which I think most people would keep quiet about, and unfortunately I don't always express myself terribly clearly.  I think because I didn't learn conversation when I was young I still have a lot of catching up to do.  I am working on improving this, and one day soon I intend to enrol on some sort of speech or conversation programme and sort it all out properly.

Maybe I will wait until I have finished the psychology.  I am really enjoying my psychology course - it is doing me good to learn something new.  We have been learning about memory, and I have discovered that mine is very visual.  In our text book was a list of ten shopping items - the idea was to mentally link the items to a route walked, and remember them that way.  That was on Tuesday and I realised this morning that I can still remember them - eggs in my letterbox, butter in the boat parked in front of a nearby house, biscuits for the dog in the next house along, tomatoes where the road bends around the corner, potatoes in a garden, cheese in the alleyway, pasta in one shop and jam in another, cornflakes in the supermarket at the end of my journey.  I have forgotten just one item, which bugs me - but still!  I will utilise that technique more now I know I can do it so easily.  Not necessarily for shopping lists - I find a pen and paper handy - but maybe for the psychology exam itself!

But I digress.  I was wondering if this is part of the initial problem with sufferers from a thought disorder - that they think too much and can't manage to express these thoughts, so internalise them and then this manifests later as disturbances in thinking.  Which helps to explain why writing is so therapeutic, because it can help a person to organise their thoughts, as well as giving a sense of pride in a created product, and perhaps too, if one is lucky, a career and income.

I have all sorts of theories about mental illness - and I am sure some of my insights could be useful.  The problem is that they remain just theories.  Earlier this week I attended a meeting at the local university - we were talking about speaking to social work and nursing students from a service user perspective.  The member of faculty staff present was worried about giving what he termed unsubstantiated information to students - he seemed to think that it would cloud their judgement.  (I am guessing that he would disapprove of me telling them that I have a diagnosis of schizophrenia and yet am well and don't take or need medication, because this is not something he thinks they need to know).

I believe otherwise - that students should be taught how to learn, not what to think.  And judging from my experience at Newcastle, young people are much more discerning that we perhaps give them credit for - surely they should be allowed to access several different types of information and then decide for themselves what is the most effective, or learn it for themselves later on in the workplace?  Also, the advantage of bringing new young people into a system is that they can bring a fresh perspective - and therefore work forwards.  Wouldn't it be great if young people working in the mental health system believed in recovery and therefore could convey a sense of hope?  What could be wrong with that?

Anyway, I must thank 'Tea and Talk' on Twitter, because this is where I found the link to the Oliver Sacks piece above.  'Tea and Talk' is funded by Time to Change and looks like a brilliant initiative - I hope to see more of them in the future.  Here's the link to the twitter feed, from which you can find the website:

Friday, 19 October 2012

Community Celebration Event


Hi Rossa 

You are right - it would be certainly be healthiest for me personally to stay right away from mental health professionals - although I do think that peer recovery work is invaluable.  I went to a community mental health event 'To celebrate and explore ways to improve mental health and wellbeing'  for an hour this afternoon.  My ex-employers were there and various people from local mental health services.  I had known about it for some weeks but not particularly planned to go - but then I decided it would be a good thing to turn up and show my support for their enterprise.  But when the nice man who welcomed me at the door asked if I was 'a service user or from one of the organisations' my heart sank.

I said, 'Not really,' which sounded rude, so I elaborated that I had used services a long time ago, and that I used to work for the Dorset Mental Health Forum, which reassured him because then he knew how to classify me (basically, I had a foot in both camps).

I must emphasise that there was no malice involved at all and that these people genuinely want to be inclusive - but I just don't feel comfortable identifying myself as a service user.  (Although of course, by being there today, I became a service user). 

I chatted to a few people and then attended a talk on nutrition, which I found simplistic and slightly patronising - when the (again very nice and well-intentioned) speaker said to the group assembled 'You should not eat too much salt because it affects how your medication is absorbed in your bodies' my heart just sank (again).  He was talking at a 'mental health' event, so I suppose he assumed that everyone must be on medication. 

And when someone asked him about the link between IBS and mental health, he said that there was not really a connection there, although there is a link between IBS and anxiety.  So he does not even consider that anxiety is a mental health problem!  This guy seemed to have specialist knowledge of mental health conditions - he certainly reeled off the names of enough drugs during his talk.  But what on earth does he think anxiety is, if it is not a mental health problem?  It is at the root of all these conditions, darn it! 

I think he might have been confused by the fact that a lot of people with IBS are offended by the thought that it is 'in their mind'.  'How can it be in my mind?'  they ask.  'I feel pain!  I have symptoms!'  Well - the body is a wonderful thing.  And it houses the mind as well as the intestines and lots of other organs, and nobody quite understands the full complexity of all their interconnections.  But we should keep trying.

Anyway, I had to leave the talk early to pick the kids up from school, so it might have got a lot better after I left.  And I don't want to spend my time attending, then finding fault with, this sort of event, or picking holes in other people's speeches.  I want to improve things, but I don't think this is the way to do it. 

I am starting to think that perhaps I should not have been there today in the first place - perhaps all this stuff is actually none of my business.  I can't help wondering if I am even slightly institutionalised on some level, in that I still feel some sort of subconscious pull to these sort of environments?  After all, I did voluntarily attend a day hospital for several years!

But I will carry on.  As Chris Muirhead (the Scottish mental health activist) wrote to me recently on the Mad in America site when I expressed misgivings about being involved in the system as a 'service user', you can't put the cat back in the bag once you've let it out.  Also, in her words, 'I've started, so I'll finish, sort of thing'.  Bravo, and ditto.

I certainly don't feel as grounded as I should, this week - and yes, it's because I have been identifying myself as a person with a problem.  I didn't have these sort of concerns at Newcastle - maybe because I was in a more enlightened academic environment there, or maybe because the events I have attended this week have been literally too close to home.  Perhaps the difference is that I was invited to Newcastle, and the audience I spoke to there wanted to hear what I had to say - here, I have been trespassing on other people's parades. 

Good to hear from you, Rossa.  I will go over to your blog now - haven't been there for a few weeks.  All the best, Louise.  

Thursday, 18 October 2012

What's in a Name?

So, on Tuesday (it seems like longer ago) I attended a talk at Bournemouth University given by a nurse called Ciaran Newell, who specialises in treating eating disorders.  He spoke about labelling as it relates to stigma and discrimination, something he says he has personal experience of, being a) a male nurse, and b) Irish. 

He was an eloquent sort of chap (I suppose it would not be PC to speculate here on whether he has kissed the Blarney Stone.  I wish I could kiss the blarney stone, come to think of it...  I wonder where it actually is?  Does it exist, or is it just one of those expressions?  Anyway...)

The talk was interesting enough.  It marked the end of Mental Health Awareness Week at the University, which is a whole programme of events around World Mental Health Day, a commendable enterprise.  I attended a talk during the same programme last year - Minette Waters, the author, gave a talk relating to the charity work she does with the criminally insane (what an awful expression that is!  I don't think I have ever written it down before - can it really be the correct term for people who have committed a crime due to illness?)

So.  Ciaran talked a little about the offensive nature of labels, but then said that on the other hand, labelling helps treatment and understanding.  I hate it when mental health professionals say that!

Labelling does not help anything or anybody.  I can't be any clearer about this.  Let's take the label 'Schizophrenic'.  It does not make any difference to the treatment - because the same medications are used as in bi-polar, schizo-affective, and other disorders.  Basically, when a patient suffers psychosis a cocktail of drugs are tried in an attempt to remedy it, until something works.  Sometimes, if after several years a medication is changed and a patient responds well, the diagnosis is changed as a result.  Psychiatric treatment fundamentally operates by a process of guesswork. 

I am not making this stuff  up, although I would not blame anybody for thinking that I am.  There is a huge weight of literature on the subject of the complexity of mental health treatment - just take a look at the Mad in America website (link on the left hand side of this page) which will bust a few myths to say the least. 

(I am aware, by the way, that I may be preaching to the converted here, but I am hoping to have rustled up a few new readers recently and if there is anybody new here I want to point them in the right direction from the outset).

So that's treatment.  And as for understanding...  How can anybody possibly understand me better once they are told I am schizophrenic?  Surely it will just cause them to look at me in a different light, rather than accepting me as the human being they previously thought I was?  Not just me, obviously, but anyone.  There is no understanding of the condition, not even amoungst mental health professionals.  To them, I am schizophrenic.  Foolstop.  The fact that I have been on no medication for more than ten years and have no symptoms of mental illness, or any degeneration of the brain, counts for nothing - supposedly I am just waiting for the next breakdown.  And if it never comes?  That will prove nothing.  And if it does come?  Ah yes, then they were right.

I asked at the end  of the talk whether the speaker thought it would be beneficial to change the label of schizophrenia, and he replied that it certainly had helped to reduce stigma and discrimination by changing the name 'manic depression' to 'bi-polar disorder' but that 'Schizophrenia isn't quite there yet'.  I didn't quite understand what he was trying to say, but another member of the audience (who I have seen before, I think he is a member of the University staff) jumped in then and said that there is currently a move to change the diagnosis to 'thought disorder'. 

Now, how much good would that do?  How many people would feel that they have been given their lives back?  'You are not schizophrenic, you have a thought disorder'.  What a huge relief that would be.  Even for me, who maintains that I don't care what I am called, because the fact that I manage without medication and don't have any symptoms of mental illness is enough proof that I am not schizophrenic, even if the medics still insist that I am. 

Truth is - the label still hurts.  Nobody is that strong that calling them a lunatic, and saying they will always be one, wouldn't hurt. 

I don't want to diss Cieran - I was embarrassed after the talk because I had asked a lot of probing questions at the end.   I didn't want to show him up, but I just think this kind of stuff needs to be properly understood.  And what better opportunity could there be than during a talk about labelling?

Cieran demonstrated a high level of understanding - he spoke of how a label impacts on the identity of an individual, and can block self-realisation.  He spoke about how the individual with a label can adopt the characteristics linked with that condition.  That is exactly what happened to me during my day hospital days - I was taught what to expect from life as a 'schizophrenic' and I conformed, because by being compliant I was protected (I gained housing and state benefits, I had a place to go every day). 

Cieran spoke about how the labels can cause social exclusion because you feel unable to tell others about your condition, and then because you are forced to hide you always feel at risk of being found out.  Again, spot on.

But - he said then that this sense of shame and the resultant not-telling, was an 'adaptive response'.  He said that the fault in stigma lies with society, not with the individual.  What he failed to recognise - because he doesn't have the label 'schizophrenic' - is that not-telling is a necessary response to extreme labelling. 

Why should you tell the world that you are a 'schizophrenic'?  Because it makes things easier for others in the same position.  But in doing so you are making a personal sacrifice of yourself - of your own standing in society, perhaps compromising your family, perhaps as a result losing your hard-won peace of mind.

I do it, because I am lucky to be in a position of strength - on the days when it all gets too much I can hunker down with my family, who thank God don't see me as a 'Schizophrenic'.  Just take a few days to re-gather myself.  But I wouldn't recommend it to others.

Apart from anything else, when you stand up and say, 'I'm a Schizophrenic - but I'm better now' (knowing that this does sound mad, no matter how sane you try to look)  you are not holding out any real hope for other people.  The mental health professionals won't acknowledge that I am better - so why on earth, I wonder at times, did I ever expose myself in this way? 

I mentioned the anomoly to Cieran - that recovery from schizophrenia is supposed to be impossible without medication and yet I don't take meds and the professionals still won't accept that either I don't have the illness or that I am recovered. Another member of the University staff said that some professionals see schizophrenia as a relapse/remission syndrome - but that all of us are equally at risk of having a psychosis some time (and this was meant kindly - the implication was that therefore I should not take it personally). 

But there is a big difference between a general concept of being at risk (which would not impinge on most people's consciousness - we are all at risk of everything all the time, and we have to ignore that fact in order to function in our daily lives) and being told by professionals that you should never consider yourself mentally well because you have a brain disease that you will never recover from.  Psychologically, there is all the difference in the world.  It takes an effort some days to convince myself that I am sane - even though I am clearly not insane - because of the darned label and what they tell me I should expect from my life and from myself.  How can I expect other people to believe that I am normal under this sort of stigma? 

This is why when an enlightened mental health professional like Cieran stands up and makes enlightened statements like, 'Diagnosis can make what is transient, permanent' (a quote from Burke and Porter) or explains the faults in service provision, as he did, I can't be simply grateful, I have to keep pushing for further understanding, proper understanding. 

Yes, a diagnosis of schizophrenia can, as he points out, open the door to all sorts of services and provisions (even ensure that one is fed and housed, as I was).  But it sucks the soul out of an individual.  It makes them fear themselves.  It even makes them fear recovery (because if that happens, by some miracle, one will no longer be fed and housed, and then how will one survive in the world?)

How exactly is one suppose to survive as a schizophrenic in a world of human beings?  One is not allowed to recover - you are told that recovery is impossible, it is a lifelong condition, and you need to take medication for ever (regardless of the impact that medication has one your health).  Recovery, if it does occur, is not acknowledged - the label stands.  You must learn to live with that label - it is society's problem, not yours, apparently.

Would you employ a schizophrenic?  I don't know that I would...

Ciaran does have insight - he proposed solutions to the problem of labelling, which included re-education, use of the internet, of peer support and advocacy.  But that is just tinkering around the edges of the problem - the label itself needs addressing.  Nothing else could make as big a difference to the actual living of lives - nothing could be kinder - than simply to remove the stigma from our shoulders.  'You are not schizophrenic.  You have a thought disorder'. 

Job done.  Then people who have experienced the problems will feel more able to speak freely about the condition, the symptoms, the risk factors.  Then young people can be educated on how to be watchful for the signs, how to guard their mental health. 

I did not mean to heckle Cieran - on the other hand, I really wanted to educate those students.  (The room was packed by the way - perhaps a hundred people in the audience, in contrast to the event I attended last year, which had perhaps ten, and far more than the thirty or so I spoke to in Newcastle).  Of course, Cieran's field of expertise is eating disorders, not schizophrenia, and so I suppose I couldn't have hoped that he would understand the impact of the diagnosis that I have.  I should not have taken it personally perhaps - but throughout his talk he constantly referred to schizophrenia, and in the end I found that I could not stay quiet. 

I didn't know quite why I have felt so teary and vulnerable for the last couple of days, and why my self-esteem had suddenly plummeted.  Now, writing this, I am beginning to understand.  It has been an emotional time since Tuesday (it wasn't easy standing up and announcing that 'I have Schizophrenia' to a room full of people who were there to listen to somebody else) but I feel better already.

Writing helps, as I have been saying for a long time.  If you are new to this blog, and have suffered emotional distress or are still battling with it, try writing down how you feel about it all.  You don't have to show anybody what you have written, but just try it and see.  It helps.  The tears may come (tears of self-pity? of anger?) but afterwards you can re-read what you have written, and you can feel proud. 

Wednesday, 17 October 2012


If anyone logged on here earlier today and found an advert for a mature dating website, I sincerely hope you ignored it.  I have now had to remove all the social network links from the right hand side of this blog, in order to get rid of the advert.  Grrr.  I have no idea how it got on here, and I find it really annoying. 

Anyway.  I went to an event called 'What's in a Name?' at Bournemouth University on Tuesday, as part of their Mental Health Awareness Week, and had an interesting time.  I intend to blog about it very soon - probably tomorrow, as it provided much food for thought and deserves a longer post than I can manage at this time of the evening. 

I have also been active on the Rethink Talk website in the last couple of days - I find it quite addictive, so will definitely have to be stringent about limiting my time on there.  Have also been having a good look around the Mad in America website, which I think is a brilliant resource - I really can't praise it highly enough.

I walked my dog at the beach today for the first time in months - during the summer I tend to take her to the parks, as they are quieter.  We had a lovely time - I had missed the sea more than I had realised.  It seems like longer than six weeks or so since the summer holidays, when the children and I were at the beach hut and in the water most days. 

I don't know where the time is going this week.  I had got on a bit of a roll with the recovery book; worked on it a lot last week and over the weekend but have been too busy with other stuff to look at it since Monday - hopefully tomorrow will see some progress with that. 

I can't believe it is almost half term.  Little one is loving school now - no hint of tears in the morning, although he does insist that I have to wave goodbye to him through the window when I leave (he blows me kisses!)

The others are also thriving - but this is a long term, and they are all ready for a break.  I have some writing workshops and suchlike planned for the next couple of weekends, so life will continue to be hectic for a little while yet, but in a good way.  I think I will have a proper holiday over half-term - hide the computer from myself, and just concentrate on being with the kids.

So, more tomorrow about the Bournemouth Uni jaunt (or if not, definitely the day after, or if not, then most certainly over the weekend).

Wednesday, 10 October 2012

Surviving Schizophrenia: A Memoir

Paul was up late last night compiling this - a list of places where my book can now be bought.  Unfortuntately, self-publishing entails marketing - not my favourite thing - but luckily for me, my husband works hard to help.  He has made the book available in many places.
Here goes:
Surviving Schizophrenia: A Memoir
The E-BOOK is available from...
Amazon Kindle
United Kingdom.
United States of America
The PAPERBACK is available from.....
United Kingdom
Amazon (Online).
Waterstones (Can also be ordered in store)
Also other good book shops and public libraries.
United States of America
Amazon (Online).
CreateSpace (Online).
The Book Depository (World wide).
The Nile (Australia)

Friday, 5 October 2012

Newcastle (2)

Well, I slept fantastically, so here is the new blog post as promised.  I am not sure what else to say about Newcastle though...  maybe I will just describe my visit.

I went to the hotel when I arrived, to chill out a bit.  I was lucky - they let me up to my room early (I wasn't supposed to book in until after three pm).  The girl at the desk was quite amusing though.  She asked if I had any room preferences.  Confused, I asked what choices I had.  To which she responded, 'I am sorry, we have no rooms left with river views'. 

Clearly, if I had said I had a preference for a river room, I would have got one.  I was too thick to know what she was asking, so I got lumped with the inferior room (I am guessing the receptionists are told to save the river view rooms for those visitors who ask for them).

But, to be perfectly honest, I really did not care what view was out of the hotel window.  It was not as if I was going to be sitting looking out of it for recreation.  Having worked in hotels myself, I was always surprised about the fuss certain guests made about the view from their room - their insistence on a sea view, for example.  They were out for most of the day, and at night time it was dark - so what difference did they think a view from the window would make to the enjoyment of their holiday?

Anyway.  I had lunch at the University, with Kate Hudson, the University Public Engagement Officer who had invited me up to Newcastle.  She turned out to be lovely - right on my wavelength.  She had invited a student from the new University Science magazine to interview me - and he was lovely too.  I am amazed at how articulate, confident and calm all the young people I met at the University were actually.  To be so young and yet so capable - how wonderful.

Anyway, after the interview I went straight off to give my talk, which was good as I didn't have time to think about it too much first.  My lovely daughters had helped me set up a Powerpoint presentation to go with the talk, which worked like a dream.  They are so smart (or perhaps I am just the converse)!

There's not much to say about the talk - I spoke for about half an hour and said a lot of the things I have written about on here.  I didn't read from a script, but I had notes to help me when I floundered.  Afterwards, some of the students asked questions, which I did my best to answer.

It was a really positive experience - empowering.  Or, as little daughter once said, 'I feel like - Woman can Build'. 

Afterwards, we headed off - Kate, myself and Dr Fiona Le Beau.  As I have mentioned on here before, my talk was part of a series of events around the 'Reassembling the Self' exhibition curated by Susan Aldworth.  Fiona is the Professor of Neuroscience who had initially arranged the exhibition with Susan.  At the Hatton Gallery, where part of the exhibition is currently housed, we listened to a reading by Henry and Patrick Cockburn, author's of 'Henry's Demons'.  They took questions afterwards too.

Then Patrick, Henry and Henry's younger brother, myself, Kate, Fiona, Susan and some students went for drinks and on to dinner.  I think there were about ten of us.

The next morning I had no engagements, so I went sightseeing.  I saw the Baltic - an amazing Arts Centre, and the Sage, a music centre, both of which were right by the hotel.  Then I visited the Hatton, to view the Reassembling the Self exhibition properly, to the Vane in town where the rest of the exhibition is housed, and to the Laing Gallery, where there is an exhibition of Quentin Blake's work.  I also went to the Central Library, which has been built recently and is really impressive.  All of it was actually really impressive - Newcastle was much lovelier than I had imagined.   

Then lunch at the hotel, and home.  Taxi, plane and train - from North to South in less than four hours.  Amazing.

I have used the word lovely several times in this blog post.along with various other superlatives.  Maybe my brain is disintregrating - or perhaps it was all just lovely.  I feel really priveleged to have had the experience.

There is a possibility that the Reassembling the Self exhibition may tour at some future point - and that I may be involved in some way if it does.  I think it would be a really good thing - and I am not just saying this because I enjoyed the experience.  I thought it was an excellent way to encourage dialogue about mental health, something that badly needs to be done.  The exhibition has apparently been extremely popular - so fingers crossed for a tour. 
There is also a possibility that I may be involved in the Science Festival which Newcastle are hosting next September.  This is the biggest Science Conference in Europe, with 50- 70,000 attendees, if I understood what Kate was telling me correctly.  I won't say what my role will be, as I don't know for sure if or when it will happen, but I am really excited about the chance of becoming involved.  I will keep you all posted.

So - to conclude - and to quote Miranda Hart's Mum - such fun!