Saturday, 28 April 2012

Radio Daze

I have just been on the radio!  I have an old friend who works at the local hospital radio station and recently I got in touch, sent her a copy of my book, and asked if I could come onto her programme to talk about it.  It was all arranged a week or two ago.  I only told a few people because I was already nervous and I didn't want to put too much pressure on myself by announcing to everyone I knew in advance that I was going to be live on air.

The programme lasted about an hour and a half and Helen and I talked for a good forty minutes of that.  Two of the friends I had told about it both texted while I was still in the studio to say it had been fantastic etc, but I was convinced that they were just saying that to make me feel better, because I was sure it had not gone very well.  There was so much I had wanted to say that I had not expressed properly.  And my fears were confirmed as soon as I got home - before I had even walked through the door Paul greeted me by saying that I had sounded very nervous on air. 

Paul had managed to record the show, so I sat down straightaway to listen to it.  And actually it was not nearly as bad as I had thought - at times I sounded quite coherent.  Although I hadn't put across all of my views on the subject of mental illness, I did manage to voice some of them.  And although the beginning of the 'interview' was a bit disjointed - Helen had asked questions about my early childhood and education and that all seems such a long time ago... - there were times in the middle when I became impassioned by what I was saying and it all seemed ok.

The main thing, I think, is that by being on the radio talking about mental illness and the diagnosis of schizophrenia, the subject seemed to be normalised.  I do think these sort of things benefit from being aired.  I am going to try to put Paul's recording onto this blog tomorrow, and then you can let me know what you think.  I might send it to the Time to Change campaign people too.  Because that is what they are all about - starting conversations, normalising the subject, and after re-listening to myself on air I can see their point even more than usual. 

So that was my evening.  Much more exciting than usual.  Another thing I have done that I have never done before and never thought that I would.  Actually I have been on Helen's show once before, many years ago - she used to read out some of my poetry and one evening she asked Paul and I to join her for a quiz live on air - but I remember being completely crippled by nerves on that occasion and almost totally inarticulate as a result.  So tonight really was a whole new experience - another big step forward.  Thanks to Helen, for giving me the opportunity.

Whatever next?  Watch this space!

Friday, 27 April 2012

A Social Day

I had a very social day today - two friends over for coffee this morning (not at the same time, oddly; one left as the other arrived) and then lunch at another friend's house.  One of the play school Mums had invited several of her son's friends for lunch - and Toddler, always the centre of the action at play school, was of course one of the invitees.  We had a good old chat, the Mums and I, while we watched our four year olds 'hanging out' together.  Lovely.   And the best thing about it all was my lack of nerves - in the old days any sort of get together would have been a trigger for all sorts of anxieties, instead of which I just relaxed and had a good time.

Later on I took Toddler and one of his sisters to walk the dog.  (The other children were out).  The weather was inexplicably hot and sunny - after a week of heavy winds and driving rain this felt like a momentous thing.

We walked a short distance, then climbed up a grassy verge, and Toddler and I sat down about a hundred yards away from his sister.  We then took turns calling the dog so she dashed back and forth between us like a mad thing, her huge ears flapping as she ran full pelt, putting her brakes on at the last minute to slide across the grass to a stop mere inches from where we sat.  It was hysterical - not my usual method of exercising the dog, but the perfect way to wind down with the kids after a busy day.

I copped out at dinner time.  I served up bacon sandwiches and ice cream to the troops - hardly a balanced meal.  I am just about to chop up a pineapple in an attempt at damage limitation.  In my defence I have been a Stepford mother all week, providing masses of vegetables and lots of exotic fruit at every turn.  And it is Friday night.

Have a good weekend!

Wednesday, 25 April 2012

Apologies for the Absence

I have been neglectful of this blog - a whole week without a single post.  Shame on me!  I have no particular excuse - just the pressures of ordinary life.

My eldest had to have a minor op earlier this week.  I hate seeing her under par, although on the other hand it has been nice in a way to have her at home.  We had such fun at the hospital before she went down to theatre - she taught me to play a card game called 'Slam' - a bit like 'Snap' but instead of calling out you have to slam your hand down on the cards, and the object is to get rid of all your cards, not to collect them all.  I haven't laughed so much in ages - and I had forgotten the therapeutic power of laughter.   It made me feel able to cope with the day ahead, where previously I had been feeling overwhelmed by the pressure of it all.  Note to self - must play with the children more often.

I have been doing a little 'work' although I am not yet formally employed by anybody.  Yesterday I went to a meeting about the redesign of mental health services.  It was part of the NHS consulation process - they wanted the opinions and input of service users and carers.  It was an interesting morning, and I enjoyed the opportunity to meet new people and learn more about all sorts of things.  It still feels odd though, suddenly identifying myself as a 'service user' when really I have not used mental health services for at least eleven years.

Most people who recover from breakdowns and integrate into the community keep well away from the mental health system - as I did for a long time.  It feels more comfortable that way.  But I want to play a part in improving the system - and the experience I have had of it is very relevant to that desire for change.  So I have had to make myself vulnerable by suddenly being up front about my past involvement with the system - although I don't think I have got the balance quite right yet.  We were divided into groups for discussion yesterday, and I told everybody on our table about my diagnosis during the first part of the debate - I think in future it might be more professional to hold back a bit on that.  On the other hand, if we are not open with each other (and I mean humankind as a whole) how can we hope to move forward, to gain further understanding, to learn tolerance and acceptance? 

I suppose I will learn more as I go along.  This was not a typical experience yesterday anyway - I think in future I will be working more in peer support, so I will be in an entirely different sort of working environment.  And I guess if the professionals do decide that actually I never had schizophrenia, I won't be able to go around accidentally disclosing the diagnosis any more. 

It is amazing (as a mother) how life changes once work comes into the equation.  Suddenly my focus is more on me, because I am actually doing something of importance out of the house.   Luckily the children are old enough to cope with the shift of attention, and my work is very much part time.  I am also taken aback by how many arrangments I have to make in order to be somewhere other than the home.  Dropping the children off beforehand, travelling to and fro from the meeting yesterday - I found that the vast majority of the day had gone, for a meeting of just a few hours.

Anyway, it is progress, and that is a good thing.  So I will keep going with it all - and make sure I still find the time to blog, and to keep on writing the new book.  I feel like I am juggling a lot of things just now - but as long as I have Paul and the kids to keep me grounded I am sure it will all turn out fine.

Wednesday, 18 April 2012

Some Links I Like

I have so much to write about this evening - but it is already late so I am going to keep it brief.  I met Dr Alison Brabban at the Schizophrenia Commission in London.  Dr Brabban is a consultant clinical psychologist and honorary senior lecturer at Durham University.  She is a lovely person, extremely enlightened about mental health, who has been carrying out some valuable work in the field.  I have recently been in touch with her and she sent me an article about recovery rates from schizophrenia with and without medication.  It was written by Martin Harrow and Thomas Jobe in 2007.  Here is an abstract  (summary) of the findings.

I can reproduce the whole article if anybody is interested, but the summary just about - well, sums it up, really.

Next, here's a link to an article in the Guardian citing a study on anti-psychotic medication and its effectiveness in warding off early signs of psychosis in young people, preventing the oncome of schizophrenia - or rather its ineffectiveness.  To quote this study, which was done by a group of five universities, '  ''Benign'' psychological treatments such as CT (cognitive therapy) and counselling were effective at reducing the severity of psychotic experiences that can lead to conditions such as schizophrenia'.


Finally, a blowing-my-own-trumpet link to a wonderful review of my memoir that my lovely husband found for me (he actually spends his time trawling the net looking for stuff like this - how lucky am I?!)


That's it for today, folks!

Tuesday, 17 April 2012

Another ridiculously long reply to previous comments.

OK - first I will reply to Anonymous 1 - the mother who has been communicating with me for a while.  Thank you for your comment - I was a little concerned in case you thought I was being harsh.  Rossa Forbes (the Holistic Recovery from Schizophrenia blogger) commented recently on here that her son is more sensitive than his two brothers and she thinks that may have been one of the factors in his illness.  So too with your son perhaps.  I know I have been over-sensitive in the past, and if I was tougher I may never have broken down in the first place.  So yes, unfortunately he needs to become an actor, as we all are at some level, in order to get through life successfully.

Truth is important to me, as I have often stated, and I hate the fact that people often lie, or obscure the truth, and think this doesn't matter.  I would advise your son to write his story down - he doesn't have to publish it, but if he wanted he could send it somewhere anonymously, and if he feels that he is being heard this might make him feel better.  I think the psychiatric system makes us feel powerless, and unfortunately there are people in the system who abuse their power.  We are still lucky when you look at the situation historically - at least now when we get better they let us out!  And, as I have also said lots of times before, I am glad now of the lessons that I have learned.  I blundered through life when I was young, making numerous mistakes because I knew no better.  Now I know enough to look after myself and have been blessed with a young family to be proud of and safeguard - every day I appreciate how fortunate I am,  and constantly check myself to make sure I am doing everything to the best of my ability.

Anonymous 2 - or new Anonymous.  Thank you for your comment too.  I look at my situation from all angles all the time - indeed it is fair to say that I have over-anaylsed it.  I am very aware that a lot of people will not believe my version of events, which is why I always try to be as clear as possible about what has happened in my life, so that people may find it all easier to understand.  I have only said what needed to be said - I have held back from some disclosures that may harm others.  But what I have said is the truth.

I can assure you that everything I have written in my book is true.  It may well be that the medical records tell a different story, but there is nothing I can do about that.  And I am not trying to 'prove myself right' against trained professionals at all - I only went to see the psychiatrist last week because I wanted to record that I have recovered from the so-called schizophrenia.  I want to regain back the freedom that has been taken from me, so that I can take my proper place in society, and do things that are presently legally barred to me (like jury service).  I never suggested that I had been misdiagnosed, but I am not objecting if that is what the doctors in their wisdom decide has happened.   

I would love to do a Masters.  If anybody ever wants to fund me for further training, I will be delighted to undertake it.  (Incidentally, do you have a Masters degree to back up your own strongly held views?  If not, then maybe we should enrol on the same course..)  Meanwhile, I will do whatever work I can get in the mental health field, probably in Peer Support.  I don't know if you have looked at the Mad in America site, but there are lots of medically qualified people on there saying the same sort of things that I say from personal experience - that there is a fundamental lack of dignity in the mental health system, that the diagnosis acts as a barrier to recovery, and so on.

It is the mental health system that I object to, not the individuals who work within it.  I have learned a fair amount from being in the system for so long.  I have met many people with mental health problems on a personal level, and I do know a lot about what led them to breakdown and what helps them to recover.  I know this from speaking to them, because they have told me.

As for respect, I respect those people who respect others - as I made clear in my book, there were good nurses and bad nurses when I was in hospital, and the quality of care made a world of difference to the patients.  I certainly don't 'constantly knock' the 'knowledge and experience' of mental health teams per se.  'cbtish' commented here yesterday that I know more about mental health than the psychiatrists - I have never made that claim for myself, and nor do I think it is true.  I am only an expert on my own mental health - although I do extrapolate from this to say what I think would be good for other people who find themselves in emotional distress, because I want to help those people to become well. 

You also talk about 'my wish that it had never happened'.  I don't wish this at all.  I have said countless times on here that I am grateful for the whole experience - I have learned a lot from it all and I am still learning.  If I had never been ill I would never have met Paul and had my kids - I have been priveleged to be able to stay at home with them for so long - my life is just great, and getting better all the time.  If I had not been ill I might be a lawyer now with a nine to five (or nine to seven) job, with maybe two children who I never saw when they were growing up because they had to go to childcare so that I could work.  I might be richer, but I could not have been happier than I am now (don't intend to sound smug, obviously no-one's life is perfect...) Partly I am happy now because I was so unhappy in the past.  That's fine.

And yes, I was psychotic and sectioned three times, and no, I don't believe this was necessary for my protection or that of the public.  I was not suicidal or violent.  I was scared, and desperate.  If when I was nineteen and I became psychotic (or extremely emotionally distressed, if you want to look at it in human terms) there had been another safe place for me to go rather than St Anns (and by safe I don't mean secure, I mean staffed by human beings that I could trust and who would have seen to my basic human needs - food, shelter and so on) I think I might have recovered better and not had the subsequent breakdowns. I don't know this for sure of course - hindsight again - but what are experiences for if not to learn from?  I would like to go to a Soteria house if I ever become ill again - which I hope I never will.  Apparently there is a new one opening soon in Brighton.  I am going to establish some links, just in case!

I try to write about what I have learned - the healing power of human kindness, for example.  'Dr Jameson' was/is kind to me and speaks to me as a human and an equal - I made that clear in my post.  I have had good, bad and indifferent treatment from other mental health professionals.  I know the difference, and it is vitally important.  I repeat, it is the system that needs to change, so that bad treatment does not become or remain institutionalised. 

I had better stop here or all this won't fit in the comment box again!  But let me end by saying that you are welcome to 'switch off' from my story any time you like - I don't need anybody's attention, I am just trying to help and I do this by writing my blog because I enjoy writing.  But do try to keep your mind open to other views.  It is important in your line of business!

You could start by taking a look at Ron Unger's blog.  Or Duane Sherry's 'Discover and Recover'.  Or some of the others that I have referred to on here - all written by capable and understanding people, some of them medically qualified.

PS Obviously it was too late to stop - the comment wouldn't fit the box again.  I must stop this over-lengthy replying habit soon, or I won't have time to do anything else.

Monday, 16 April 2012

Link to this blog and my memoir on the Schizophrenia Commission website

I am very proud - yesterday somebody pointed me to the Schizophrenia Commission website.  My recovery story has been highlighted in the 'Personal Perspectives' section, and they have referred to my 'fantastic' blog and book.  My head is growing as I type...

Here's the link:

Lengthy response to comments on previous page

I have had to publish this separately because it was too long to go in as a comment - I wrote it as a reply to yesterdays comments.

Thanks for the comments.  Rossa, I think the psychiatrist is more likely to 'find' that I never had schizophrenia when he goes back over the old records, despite the fact that he may be contradicting colleagues - because it is now in the interests of psychiatry to do so.  (Also, I wonder if some of them have retired by now?)  As I said, if I never had schizophrenia, my case does not then go against the received wisdom that there is no possible recovery without medication...  Don't worry, I am not in suspense.  I do wonder if I have scuppered my chances of being declared sane by airing the topic on here before he has reached his decision (there is a possibility he will be reading this) - but I wouldn't have done it if I was that bothered about the outcome.
I do wonder, in my more paranoid moments, whether there is a risk that others may stop their drugs because I am seen to manage well without them.  I wonder if this worries the mental health professionals, and that is why they are cautious about my apparent recovery.  If anybody ever asks me how I stopped the medication I always say (truthfully) that I did it under the auspices of the psychiatrist.  I would not have dared to try otherwise - I was always so frightened of being seen to be non-compliant and thus getting sectioned again.  But I wish more psychiatrists could see that breakdown is not the inevitable result of stopping medication - that people could learn to manage their own lives, given the chance, with the necessary support and if their life situation is sufficiently stable.

'Dr Jameson' asked whether I thought the diagnosis was wrong, and I said that although I think my problems should be seen in a human context - chidlhood trauma, extreme stress, anxiety, dope etc leading to a breakdown, I did fit all the diagnostic criteria for schizophrenia.  He said those criteria have changed now - and in view of the fact that I was relatively well between breakdowns and am well now, I don't fit the usual pattern for the 'syndrome' of schizophrenia, as he called it.  I was going almost cross-eyed, I was trying so hard to concentrate and understand what he was on about...  I was mostly bemused but at one point a bit offended at how he was re-writing history as he spoke - he told me that I had suffered separate psychoses but had 'responded well to treatment'.  Responded well to treatment? I think not!  I think I recovered in spite of the bloody treatment!  I didn't dare say so though...

He was much softer when I first saw him ten years ago.  He used to listen a lot more than he talked; I used to leave his office feeling that I had talked too much.  But he was a good guy - and I don't think he is bad now (despite his delusions and fixations - so funny, cbtish!)  His outlook has certainly changed and he does seem entrenched in his viewpoint.  He did write down the stuff I told him about Finland and Mackler though...

I think it would be good if we could learn from each other - if we don't verbally attack psychiatrists they will be more likely to take our views on board.  It is frustrating sometimes, though - and I did find your comment so funny!  I would like to have a go at writing in your style!  But I have to go back and see the guy again - I don't want him to hate me, so I can't join in. 

And I have to be honest, even if you guys do see me as craven, or over-empathetic, or whatever.  (A friend once told me I was servile.... That hurt, but she was right.  She is not my friend any more though.  And I am not servile any more, thank goodness!)  'Dr Jameson' was supportive when I saw him years ago - he supervised my while I stopped the medication after my second daughter was born (although he advised me to start taking it in the first place).  I suppose he could have said I was deluded and stuck me on a regular depot injection instead!  Also, he saw me for quite a few appointments, each for quite a long time, probably going beyond the call of duty.  He was also the person who referred to my post-pueral breakdown as my, 'Third and final breakdown' which was a very clever way of putting it, and which certainly helped me to start thinking in positive terms of my illness being behind me. 

You are right, cbtish, I do go over old ground, often because I forget what I have said last year or the year before or because I just enjoy ruminating about it all over again.  Also I know that not everyone who reads this blog has read all the back posts, so I am sometimes deliberately repetitive.  The new book that I am writing about recovery from serious mental health problems will probably cover a lot of the ground that this blog does - so be warned!  I intended to write something completely different once the memoir was done - hopefully I will after the recovery book.  I would like to write something humourous - my writing used to be quite funny, but since I embarked on detailed analyses of mental health issues I seem to have lost my sense of humour.  I wonder why?

Anonymous: It will be interesting to see what conclusions the psychiatrist, or the 'Team' reach.  If they say I never had schizophrenia they will still be taking a risk as I could break down in the future, which I suppose would then be seen as a recurrence of the old 'illness'.  (I think a future breakdown is unlikely, but I can't be sure of that).  Then again, they seem to be in the business of forecasting the future, so maybe they will go for it.  Your son may have to wait a bit longer before he receives the benefit of hindsight - although hopefully meanwhile the Schizophrenia Commission will do away with the diagnosis of schizophrenia, which should help.   

I feel very sorry for your son.  He should defintely insist on getting his case looked at again.  Why should he have his life blighted by someone else's mistake?  However, he should not wait around for someone else's opinion to re-vadidate him, because that outcome is out of his control.  I know what happened to him was unfair, but he survived, and he should not feel any shame about being in a mental hospital.  Personally, I quite enjoy dropping the subject into conversations nowadays (odd, I know, but liberating).  If he can rebuild his confidence and maybe do some further study, or come up with some explanation for gaps in his CV, there is no reason why he should not get a good job in the future. 

In fact, I would advise studying as much as possible.  One of the people who most impressed me in London at the Schizophrenia Commission recovery meeting was an Asian man who said that following his breakdown he recovered by taking every course he could and gained lots of qualifications - in stark contrast to me who sat in Hahnemann House and ate and smoked for two years!  Another chap in London had a psychotic breakdown and now works in mental health research - an honourable and worthy thing to do.  Actually I would quite like to follow his example and have a career in academia - I will add that to the list of all the other things I would like to do with my life now that I feel able.

Tell your son he should not feel the need to disclose his medical history to a prospective employer - a friend of mine who is a solicitor told me to lie through my teeth about my breakdowns to get a job, because no-one would ever give me one if I was honest about the diagnosis.  I really believe now that mental health problems are preferable to physical ones (not that we have a choice) because full recovery is possible and we can even end up stronger than before.  Your son will have learned a lot about life along the way - once he lets go of the hurt and the injustice of it all he can move forward.

It does take time though, and I know I have been very lucky.  Getting the diagnosis retracted may help him to heal from the unfairness of it all - but it may take a while and may never happen (as for me) so he needs to take steps to move away from it himself.  It is a huge psychological burden - but he needs to reason his way out of it.  He knows he is a person not a diagnosis, and he needs to live as if he was never burdened with that label.  He needs to learn to disregard it.  I wish I had!

And with or without a retraction of diagnosis, I don't imagine any apology will be forthcoming, Anonymous, for me or for your son.  But if my diagnosis (and his) is retracted and that makes psychiatrists more cautious about diagnosing people in the future this can only be a good thing. They need to realise the impact these labels have on lives.  In fact, a friend told me today that her friend, who works in a private mental hospital, told her that in his hospital they now treat the symptoms of psychosis and avoid labelling, because they realise the negative effect that a mental health diagnosis has.  

My case is quite different from your son's - I was definitely psychotic on three occasions, and although there were explanations for why this happened, it wasn't the fault of the medical professionals.  And I don't think anybody diagnosed me for malicious reasons - although psychiatrists should realise what they are doing with these labels.

Anyway, good to hear from you all.  This reply has taken me over an hour to compose, I hope it is worth it!

Sunday, 15 April 2012

Visit to the Psychiatrist

I went to see the psychiatrist on Friday morning, and have been debating with myself ever since about whether to blog about the meeting.  In the end, my big mouth has got the better of me as usual - I didn't get where I am today by being reticent, after all.  (Is that a good thing or a bad thing?  Discuss).

So here's what happened.  Paul came with me to the meeting with 'Dr Jameson' - not his real name, but the one which I used for him in my memoir (he was the psychiatrist I saw after the birth of my second daughter, and my subsequent children).   The three of us talked for about an hour.  The doctor did most of the talking, I said what I could (although I felt a bit overwhelmed, which is unusual for me nowadays) and Paul joined in occasionally. 

The upshot of the meeting is that the psychiatrist now thinks I do not have schizophrenia after all.  That is to say, I have not recovered, because it is not possible to recover from schizophrenia (without the long-term use of medication).  The fact that I am so well nowadays can therefore only be attributed to the fact that I was misdiagnosed in the first place. 

I did remind him that he suggested the misdiagnosis thing some years ago, only to be talked out of it by 'The Team' (this is in my memoir).  He said, though, that ideas have changed, the criteria for the diagnosis are different now...he was very articulate and very convinced of the rightness of what he was saying. 

Well, hindsight is a wonderful thing, is it not?  I don't like what this means for people who are being diagnosed with schizophrenia now.  It means they can still be told there is no chance of a full recovery.  On the other hand, as he put it, what would be best for me?  Obviously, it would be to be told I was misdiagnosed.  Hurrah, redemption, no schizophrenia after all!  And who am I to look such a gift horse in the mouth?

I did a short counselling course a couple of years ago, and I remember during one of the last sessions, the teacher (who was lovely) telling me that I had a tendency to over-empathise.  She said that instead of standing at the side of the pit offering a helping hand to the person who was in there suffering and then pulling them out, I had a tendency to get down into the pit with the sufferer.  Thus creating a problem for myself, and not proving much use to them.

She was right.  But isn't this a bit different?  Isn't this like being in the pit with a whole load of other people, scrabbling my way out on to the edge and then walking off without a backwards glance at those I have left behind?

I just thought I would air the situation here.  Nothing is settled yet - 'Dr Jameson' has to sift through the old records, and come to a decision (presumably aided by 'The Team').  And I am probably not doing myself any favours by blogging about it here right now.  But I just wondered what other people's thoughts are on this. 

It is complicated by the fact that I don't actually believe in schizophrenia as a term anyway.  I don't think it has any foundation.  Psychiatry is based on a lot of guesswork.  So how stupid would I have to be to insist that I am (or was) schizophrenic, just to try to help other people with the same label see that recovery is possible?  I did talk to the doctor about this - I said that nervous breakdown would be a much kinder term for the experience of extreme emotional distress. 

I also managed to refer him to the work of Daniel Mackler, and the Finnish system of Open Dialogue (he wrote these things down).  And I spoke to him about the brutality of the system, the wrongness of forced medication and the fact that if there was more trust between mental health professionals and patients then the system would be vastly improved. 

He countered by talking about violent incidents that he had seen in mental hospitals in the last year, and how he has to protect the public and the patients themselves, which shut Paul and I up nicely.  And I can kind of relate to where he was coming from, because some of the things he sees in his job must be awful.  But still.  There must be an awful lot of people who are not violent who are brutalised by the system, and there must be some way of differentiating between the violent and the non-violent patients.  Plus, the system itself brings out the worst in people - if you are not treated kindly you are far more likely to respond with anger, in any situation.

Anyway, I will await the outcome of all this, and meanwhile my message remains the same.  Recovery from a serious mental illness is a reality.  In fact, if you recover from a diagnosis of schizophrenia you are likely to be told you never had it in the first place.  Maybe that's how you know you've recovered.

Confused by all the doublespeak?  Me too.  But I am no less fascinated by the subject of mental illness - I really, really want a career in it now. 

Back to the recovery book - I wrote a new chapter yesterday, about my meeting with the psychiatrist, and I suppose there will be more to come when I get to hear the decision about the 'Schizophrenia'.  He did say that if it was schizophrenia then clearly I have recovered, so that was good.  I will let you all know in due course - meanwhile, feel free to comment on the issues in this post.   

Thursday, 12 April 2012

Who Would Have Thought it? Risperdal is Unsafe...

The title of this post is, of course, meant without a trace of irony... The side effects of psychiatric drugs are terrible, and everybody knows it.  So well done, American Judge, for striking a blow for justice - perhaps now psychiatric patients will be better informed of the risks and won't be put on these drugs and kept on them for ever.  We can hope.

This news made me shudder actually - Risperdal, aka Risperidone, was the drug I was recommended to take while I was pregnant with my second daughter.  I was told it was perfectly safe in pregnancy, but said I preferred not to risk taking any drugs while I was pregnant - although I did obediently start on the Risperidone after my daughter was born.  I was not ill at all, but apparently taking medication after childbirth was a sensible precaution, for 'prophylactic reasons'.  Ha!  It made me feel unwell (funny, that) so I soon stopped. 

I am so lucky though - I did take thse drugs for several years in my mid-twenties, but did not end up dependent, and hopefully will have a long and healthy life.  So many don't, and I feel it is so unfair.  I feel so sorry for the people I see who have lost their lives to the psychiatric system.  It is so sad to witness people who are so demoralised, so hopeless about their own prospects.

Anyway, here's the link to the news story:

Monday, 9 April 2012

Free Memoir on Amazon Today!

My memoir 'Surviving Schizophrenia' by Louise Gillett, is free to download on Amazon today.  You do not need a Kindle - it can also be read on any PC or mobile device.  Please pass the word on to anybody who might like a good read.  Here's the link:

Sunday, 8 April 2012

I'm OK, You're OK

'I'm OK, You're OK'.  This was the title of a book by Thomas Harris I read years ago - I understood the principle of it, that you should live and let live (a vastly simplified summary, sorry) but I still find it hard to apply in practice.  I enjoy anaylsing people and situations, and it has become a habit over the years that is hard to drop. 

I think it is ok to analyse, as long as you can do it without judging.  I am making headway on this habit - I have always judged myself harder than anyone else, and so I am trying to be kinder and more understanding of other people's foibles and of my own. 

I have had a rough couple of days, health-wise.  I have had a sore neck and shoulder for a couple of weeks, and yesterday it took a turn for the worse - I had to give in and take painkillers, and I still didn't feel much better.  Plus, I got an eye infection, so have had to wear my glasses instead of my contact lenses for the last two days.

I used to be so vain that I would never wear my glasses, even though without them I couldn't see a thing (as those of you who have read my memoir will know).  I don't suffer from vanity now - but I still don't like wearing my glasses.  I am used to the better vision that comes with contact lenses and I find it annoying to have something perched on my face all day.  And because I usually only wear my glasses for an hour or two in the morning and evening, when I am just about to sleep or have just woken up, I feel oddly tired when I have to wear them all day.  I don't quite feel myself, as if I am at one remove from the real world. 

Anyway, on the bright side, although I retired to the bedroom to nurse my misery yesterday afternoon (once we had done the family trip to the nature reserve, dog on her new extendable lead) and I was upset since I couldn't write because my shoulder hurt so much, I got a lot of reading done.  I finished this month's book group book 'Restless' by William Boyd, which I really enjoyed.  So I will write up the review on Amazon this evening.

I surprised my elder son, who came in to see what I was up to, when I told him I was reading a spy book.  I think I went up a notch or two in his estimation for that...  Spies are his terrain, and of course that of Toddler, who copies everything his big brother does.

I made lunch for ten today (not as much of a big deal as it may sound, as I cook for six every day).  After lunch we had an egg hunt for the kids, which was over in about five minutes flat.  Every year they insist that I hide the eggs and write clues - it has become something of a tradition.  Later in the week we are having another hunt for cousins - I am hoping to buy the eggs reduced after Easter, skinflint that I am.

Not much is happening for me in the wide world just now.  I was excited last month when a film company declared interest in consulting me about a project they had on - but that seemed to fizzle out.  The peer support work that I was due to start at the end of this month appears to be on a go-slow.   The person who has commissioned me to ghost-write his memoir wants to start in early May.  Which is all fine - I am not in a hurry to have all my free time taken up with other projects, but it does feel like an anti-climax after the excitement of my day in London with the Schizophrenia Commission.

The lack of activity elsewhere does present an opportunity to get on with my recovery book, of course, which I shall grab with both hands, as soon as the school holidays are over.  Not that I want them to be over - two weeks never seems like enough at this time of year.  We could do with an extra week now and one less in the summer perhaps...

Anyhow, ciao for now.

Wednesday, 4 April 2012

Food and Health

Thought I would link to this too, partly to remind myself to have a closer look later.  I found this link on Gianna's blog too, and Emily Deans also referred to him, so I thought he must be worth a read (lots of information about health and nutrition, from the very brief glance I have already taken).

Schizophrenia and the Gut

Please read this article by Emily Deans; it is really illuminating

I found it through clicking on a link from Gianna Kali's Beyond Meds.  I was idly reading an article about the benefits of exercise to release trauma in the body, for some reason clicked at a link on the side and found this article about schizophrenia and the gut.

Because I have been gluten free for several months now, it has just become part of my routine.  I am starting to forget what a big effect it has had on my health, and this article reminded me.  My anxiety levels dropped almost immediately when I cut out gluten - although I was having CBT at the same time, so it is hard to separate these causes. 

Somebody commented on Emily's article that perhaps everyone suffering psychosis could be checked for antibodies to gluten etc.  Apparently one American mental hospital that instituted a gluten-free menu found that many more patients recovered, and much more quickly, than usual.  Amazing.

Food for thought, at the very least (sorry couldn't resist that!).

Sunday, 1 April 2012

The Great Outdoors - Again

Well, we had a long tramp around the nature reserve yesterday, and it was great, as I had anticipated.  The only drawback was that the dog had to be kept on her lead, and she is not good on her lead - she pulls us all over the place.  I keep meaning to get her an extendable one, so that she can roam a little as we walk, which is all she really wants to do.  And after yesterday's experience I promised myself not to take her with us on Saturdays until I have bought the new lead. 

We went out again today, but this time without the dog - to Legoland.  I love it there - I am not bothered about the rides, I just like to see the kids enjoying themselves, and to walk around in the open air.  I keep myself busy people watching, or reading from my Kindle while everyone else is on the rides or queuing for them.  Very civilised.

We arrived early and left early today, to beat the rush and because we did not want to leave the dog at home on her own for too long.  We still had plenty of time there - I think these things are best done in short bursts, before everyone gets too tired and grumpy.  And one picnic meal out is plenty for a day.

What has this got to do with mental health?  Not a great deal.  But I do feel that I am continuing to change for the better - I am much calmer when we are all out, hardly ever anxious about anything, and as a result I enjoy myself much more.  I am constantly marvelling at these changes - it may still take some time before I truly believe that they are permanent.   

The poor dog has been suffering a bit.  She had a phantom pregnancy which laid her low for a couple of weeks, although she is better now.  It was sad to see her whimpering and fussing around the house.  Her symptoms were quite severe - she seemed to have put on a fair amount of weight and had even started lactating.  She really looked pregnant, although when I weighed her she had not actually got any heavier.

We will give her another chance at puppies in the autumn, and if she doesn't fall that time then we will get her spayed.  It just doesn't seem fair to let her keep on having phantom pregnancies - this was her second time and it was much worse than the first.

I suppose, thinking about it, a phantom pregnancy is a bit of a mental health issue for dogs.  I mean, I know it is hormonal, but if a human exhibited those symptoms they would probably be put on medication to sort their heads out, would they not?  They might even be left on medication for ages, even though the problem resolves itself in a couple of weeks.  I am not sure what point I am making here, except to say that it is lucky dogs don't have psychiatrists.  Well, they probably do, but not on the NHS.

Anyway, following that random, irrelevant and frankly quite stupid train of thought, I will sign off now, and get back to the important business of catching up on the Sunday newspaper.  We left so early for Legoland that it hadn't been delivered yet, but I was pleased to see it waiting on the mat when we returned.  Up and at it!