Tuesday 21 January 2014

Surviving Schizophrenia: A Memoir

At the end of my last blog post I wrote about Russell Blake, who has churned out an incredible number of books in a very short space of time.  He has earned a fortune (and I believe he deserves it for working so hard).  I forgot to include a very important piece of information about this writer - he is self-published.  (As am I).

Blake says that a self-published author must spend 75% of their time actually writing and 25% marketing.  So, here goes - my memoir is doing very well at the moment.  It is riding high in the Amazon charts.  It has several new recent reviews, and a five star rating.  And it's discounted at the moment, on a Kindle Countdown deal.

Here's the link, so you can check it out for yourselves:  http://www.amazon.co.uk/Surviving-Schizophrenia-Memoir-Louise-Gillett-ebook/dp/B0057P6M46

Blake also contends that the cover is all important, and I know he's right - I am quite embarrassed now of the family snap that adorns the front of my book.  It is so not professional.  I am resolved to do something about it at some point - but for now I have to get back to my task of manically putting words on the page. 

I have a target to meet!

Changes to Mental Health Services in England

Nick Clegg made a statement about mental health yesterday.  He says mental health services have a lower priority than they should have, and that more NHS resources should be allocated to addressing the imbalance of provision for mental and physical health.  Other proposals include stamping out mental health discrimination.  Mr Clegg - quickest way forward - change the 'schizophrenia' label.  Please. 

Anyway, here's the link: https://www.gov.uk/government/publications/mental-health-priorities-for-change

I read about Nick Clegg's statement in today's paper of course.  It was Dr Mark Porter again, and he goes on to make the point that physical and mental health are linked, and states that people with 'schizophrenia' (my inverted commas) nearly always have associated physical concerns.  Another piece in the Saturday paper had a piece by a neurologist, Dr David Perlmutter.  It was about how eating well can prevent the onset of dementia and other degenerative brain diseases.  And he mentioned that gluten is often a trigger for headaches, depression, schizophrenia and other conditions, as well as intestinal disorders.

This is nothing new - I have been convinced for a long time of the link between mental health and digestive disorders.  Monica Cassini is very good on the subject (see her 'Beyond Meds' blog).  But it was good to see the information going mainstream - and it reminded me that I really should start cutting down on, if not cutting out, gluten again.  And not just for me, but for my family, if I can find a way to do it that does not shake up the usual mealtime menus too dramatically.  I have to make subtle changes, otherwise I get accused of being the Food Police. 

Anyway, the book that Dr Perlmutter was promoting is well worth a look, I'm sure - it's called 'Grain Brain: The Surprising Truth About Wheat, Carbs and Sugar - Your Brain's Silent Killers'. Here's the link for that: http://www.amazon.co.uk/dp/1444791907

Another article which was on my wavelength in today's Times was Robert Crampton's column about the dangers of cannabis.  As Crampton puts it, 'Governments should be making cannabis harder to acquire, not easier'.  And he makes a convincing case for the dangers of cannabis, referring to the very expensive rehab clinic in Zurich that he visited in order to write an article that was previously published last year in the Times magazine.   This practitioners of this clinic say that people suffering from cannabis-induced psychosis are their most intractable cases.

So, that's my summary of today's newspaper over with.  And now, back to work.  I am currently on a writing roll - after reading (in the Times, naturally) about Russell Blake, an American author who has published 25 novels in the last thirty months, I am inspired to follow his example.  Maybe I will never be that prolific - in fact it is physically impossible at the moment, because he writes for ten to twelve hours a day and I just don't have that much free time. 

But I can still try - and his blog post about how to increase your output - basically, don't self-edit until you finish your first draft, don't turn on the Internet when you are supposed to be working and so on - was very useful.  Here's the link to that post on Blake's blog, for anyone who is interested:  http://russellblake.com/how-to-sell-loads-of-books/

I have written two thousand words so far today (not including this blog post).  The quality is not relevant - the fact is, I wrote them and that is enough of an achievement in itself, for now.  It's good to have a goal, and a challenge.  Even if I only manage twenty-five short stories in a month, or twenty-five blog posts, I will still be writing, and improving. And enjoying myself, which is, or should be, what it is all about.

Thursday 9 January 2014

Schizophrenia - it's a Syndrome!

I was prompted to write this blog post by an article I read in The Times this morning.  The article was by David Aaronovitch.  I know this is the second post in a row which has come on the back of a Times piece - and all I can say is that I am like this in real life too.  A lot of my usually rather inept conversation is an effort to put across something I have read in the paper.  Sometimes I say, 'I read in the paper yesterday....' but often I am specific about the fact that it was The Times.  Because otherwise it could have been the Daily Mail, or worse, and I don't see such sources as authentic and hope that others would not either.

I know that not everything written even in The Times may be an exact reflection of the truth.  But that paper does not just contain propaganda, it also has a lot of educated debate.  And the journalists don't seem to be gagged - their viewpoint is by no means pure Conservative, although it is the case that The Times is a Tory paper.  To wit: the front page on the day of the latest general election screamed - 'We can't tell you to vote Conservative - but we think you should!' 

Well - I don't agree.

Anyway, I suppose you get used to reading a paper.  A left-wing paper would probably annoy me more, because I doubt whether they would give a genuine airing to the opinions of others - and The Times does.  In fact, I remember a full page article by JKRowling - a very left-wing lady - that was published in 'my' paper around the time of the election too.

I like the journalists who write in The Times - well, I like most of them.  Some of them seem so fiercely confident that I would be absolutely terrified of them if I met them in person.  As a writer myself, I appreciate learning how the minds of other writers work, and because of the way that journalism is moving now, we are often given some insight into the lives of the writers.  For example, Helen Rumbelow's piece today about how she tried to wean her kids off sugar - or onto the newly recommended level of 5 teaspoons a day - made a really good read, although I was disappointed that she didn't succeed.  I had hoped that she would find a way to achieve the target and spur me on to do likewise.  I expect, like me, she will keep on trying, and I appreciate her honesty.

So.  I had a good morning reading the paper.  I am a bit under the weather, in that I have a chest infection, and it was good to sit quietly with a nice cup of tea and engage in some light intellectual stimulation.  Sometimes after reading The Times, if something has really piqued my interest, I go onto their website and join in with the comments of other readers, but today I thought I'd write a bit here instead.

Getting, finally, to the point: Aaronovitch wrote about 'Syndromes'.  He started by writing about Sudden Adult Death Syndrome, which as he pointed out, is a diagnosis of exclusion - if coroners have no explanation for a death, they accord it this one.  He makes the point that many medical and psychiatric diagnoses are 'diagnoses of exclusion' ('what is left when the doctors have excluded everything else') and that calling these things syndromes 'creates an impression of knowledge, not, as it should do, of a lack of knowledge'.

Aha!  So that is why the last time I saw a psychiatrist he said that schizophrenia is a syndrome. 

And then he went on to write about neuroscience, and how wondrous a subject it is, and yet what an early stage of understanding has been reached so far.  Leading neuroscientists, he said, are completely dismissive of diagnoses such as schizophrenia and bipolar disorder.  And he goes on, 'That doesn't mean that some of the drugs prescribed for those suffering psychotic events don't alleviate some or all of the symptoms.  But quite often we don't actually know why.  And sometimes it turns out that a drug has no greater effect than a placebo'.

Aaronovitch goes on to say that this is partly because of 'Big Pharma' and partly because we and our families so desperately want to have an explanation for suffering.  We want to know what is wrong, we want certainty.  Hence the creation of 'syndromes' - Chronic Fatigue Syndrome, Gulf War Syndrome and so on. 

So: 'Syndrome' is a term for those things that may have all sorts of causes, all sorts of symptoms, all sorts of potential cures.  We need to be honest with ourselves about the fact that sometimes we just don't have the answers.  That leaves open the possibility of future growth in our understanding.  But in the case of schizophrenia, whether it is now classed as a 'syndrome' or not, when the term becomes so damaging to the future of the patient it is really time to coin a new one.

I didn't just get the urge to write this so that I could repeat everything another writer has just published, with a healthy appendage of inverted commas.  I wanted to add my own personal experience to the debate - because when Aaronovitch wrote that we don't know why anti-psychotic drugs sometimes work, I think I know why they did - or seemed to - in my case.

Each time I had a breakdown I was given a huge cocktail of drugs.  I am sure that everything was tried in turn.  Eventually I calmed down, and this was attributed to whatever drug I was on at the time.  That is the simplistic explanation.

But I don't think it was just about calming down.  Towards the end of each of my stays in a mental hospital - for the last ten days I was there - I was given a small white pill at night.  A sleeping tablet.  This, combined with the progress I had already made, enabled my brain to finally switch off and for me to further recuperate.  I was not given any of this sleeping medication to take home, but I did have to take the anti-psychotics for a long time after I left the hospital - as has been documented elsewhere...

Even that is simplistic.  I am not ungrateful for the fact that I was taken to a safe place, fed, and that some people there endeavoured to help me.  I try not to be resentful of those who were unkind, and for the cruelty of practices such as forced medication - but I will always insist that none of this was helpful. 

And I particularly remember my final breakdown.  I think there are lessons to be learned from that.  There was a lot at stake.  For a while my baby daughter had been at the hospital with me.  Then she was taken away - just as I came out of a ward round in which the psychiatrist told me 'We are not going to take your baby away'.  (What a bare-faced lie.  Astounding). 

She went off to live with her Dad - now my husband - and came back to me about three weeks later.  I knew that I had to hold on to her, because otherwise we would both be lost.  I knew that the doctors did not consider me to be well.  And then I had a meeting with a doctor at a time when, mercifully, I was lucid.  (This the thing with psychosis.  You are not psychotic during the whole of the episode.  You drift in and out of it).  Anyway, he said that they were trying one last drug.  It was the last resort, the only thing they had left to try.  It was very expensive.  It was called Quetiapine, and the brand time was Seroquel.  Thankfully, I listened to him and I understood what he was saying.  I knew what was at stake.

Well.  A nurse gave me the tablet and a glass of water.  I was back in the mother and baby unit by that time.  I sat on the edge of my bed, my daughter asleep in her pram beside me, looking at the pill and the water.  And I thought - this has to work.  This is my last chance.  If this does not work, I will lose her forever. 

So that is why it worked.  Because I understood that it had to.  And I had the choice - nobody shoved that tablet and water down me.  I picked it up and swallowed it.  And I knew it had to make me calm and to keep me calm.

And - this is stupid, I know - the name of the medicine helped.  Quetiapine.  Quiet.  Seroquel.  Sequel.  I kept repeating it to myself. 

Quiet.  Sequel.

I still don't think that the chemicals cured me.  I think my desperation did, or my determination, or whatever you want to call it.  And maybe there was a dash of self-hypnotism involved.

That's that for now.  I know a lot of it has been repeating things I have said here and elsewhere already, but I hope it may be useful.  In the case of emotional distress, no matter how severe, it really is true that if you believe you will get better, you have a much higher chance of that happening.  It is possible to make a full recovery, even in the most extreme cases of mental breakdown. 

That's why I wrote the book, that's why I continue to put myself out there as a poster girl for recovery.  (Poster woman, in fact.  I will be a poster pensioner soon enough - but I hope we will make some headway with psychiatric treatment before that day comes.)

I should probably have written this on The Times online comments under David Aaronovitch's article, it would have got more readers.  They won't let you link to blog posts on there though.  And, truth be known, I am still a coward.  My Times account is under my real surname, and although everybody who knows me personally knows all about my history, and my photo is on the front of my book and in lots of other places now, the world at large does not yet know my real name. 

I may take that final step soon.  The only thing that holds me back is that I have such a distinctive surname and I have four kids and I don't want to embarrass them any more than I have already done, or to stigmatise them as the children of a 'schizophrenic'.  But this is all so important that I may have to 'come out' properly one day.  It would make publicising the cause so much easier.  And it probably would not be a big deal at all, to anybody except for me and my family, who are (or will soon grow to be) more than capable of understanding the importance of the issues involved, even though many other people in the world still seem not to be.

Tuesday 7 January 2014

The Yellow Card Reporting System

I just read a short piece about the Yellow Card scheme, written in The Times by Dr Mark Porter.  This is a system which was set up in in the wake of the thalidomide disaster for reporting adverse side effects of drugs.  He made the point that GPs are presently under fire (fairly, he says) for under-reporting side effects to the Medicines and Healthcare products Regulatory Authority (MHRA) through the system.  But he says that patients should bear some of the responsibility too.

Well.  I, for one, had no idea that such the Yellow Card scheme existed - as Dr Porter puts it, 'uptake has been slow due to a combination of poor awareness and uncertainty about what to report'.  The scheme was extended to include the public in 2005, but last year only 2,216 cards were submitted by hospital doctors and only 2,715 cards were sent in by patients despite the fact that every year adverse drug reactions account for 1 in 16 of all hospital admissions - one million people in England alone. 

He says that Yellow Cards are a 'cornerstone of drug safety in the UK'.     

And when I read this article in the paper, I thought to myself - aha, I know a group of patients who suffer an awful lot of adverse side-effects, so much so that they can outweigh the effects of the drugs.  And I wondered to myself, hmmm, how many of these people are aware of the Yellow Card scheme?

So, mental health patients of the UK, or rather those who suffer from emotional distress (a more unwieldy, but less stigmatising, use of terminology) - report these symptoms, if and when you get them.  Feed back to the MHRA and to those who make psychiatric drugs.  Because more work is definitely needed to make these medicines safe - and you (we) deserve safe medicines.  If the drug companies or the regulatory authorities don't know about the problems because they are not officially reported, then they should be told.

To conclude - the MHRA wants to hear about any side effects which you think might be linked to any medicines - conventional or alternative, prescribed or over the counter.  For example (and I am not trying to put words into anybody's head here): excessive tiredness, obesity, infertility and so on and so forth might be seen as severe side effects.  Headaches, nausea, and so on might be seen as minor - everything should be reported.

The MHRA is particularly interested in knowing about a suspected side-effect that is not mentioned in the information leaflet, or that is severe enough to disrupt your day-to-day life. 

Visit mhra.com to send in a report online or to download a Patient Yellow Card.  Or call the Yellow Card Hotline on 0808 100 3352 (weekdays 10am-2pm).

That's all folks!

Saturday 4 January 2014

Puppy problems

My little dog had a litter of five puppies, twelve weeks ago.  Did I mention that on here already?  I think so. Anyway, our intention was to sell four and keep one, but we seem to have been left with two.  It's a long story, but basically someone strung me along for a couple of weeks, asking me to hold on to the puppy until she was ready to have her - and then changed her mind.

Meanwhile, it has been chaos at home, all through the Christmas holidays. Mostly in a good way, because let's face it, puppies are gorgeous and we have been lucky to have two of them to play with and look after.  But it has been troublesome too - due to the torrential rain, toilet training has not been going well in recent weeks.  I have been trying to ignore this, thinking that I would sort it when the second puppy went to her new home.  But learning yesterday that this was not going to happen, I realised that I had to take urgent action.  They needed to be taught to obey basic commands too. Twelve week old puppies begin to become quite a nuisance if they are not disciplined - these had become rather wild.

So today has been a blur of puppy training.  The two of them have learned to sit on demand incredibly fast, I am really impressed with them.  It helps that they are always ravenous, so will do anything for a treat. I have discovered that one puppy is a lot further forward with toilet training than the other, which gives me something to work with (previously I had not worked out which one was messing where).

It is all coming back to me now, and I am confident that I can get the pups sorted in the next week or two. I need to socialise them - they need to learn to walk on the lead and to go for short walks around the neighbourhood.  We tried this a week ago and the walk went really badly - and I felt awful when I realised this was my fault for not getting them used to walking around the garden on the lead first. I knew all this, but had forgotten.

I am surprised at myself for letting things slip thus far.  I suppose to be fair, it has been a busy time of year, but I was much better when I got my dog as a puppy - I sorted her out very quickly.  Anyway, I'll get there.  I think I'll take the puppies to a training class next week - that will be fun for me and for the children. And for the puppies of course.

I have certainly learned a few things from raising this litter - chief among them that homing the puppies is the crucial thing to get right.  I haven't done badly - the other three have gone to lovely homes.  And my little dog has really enjoyed motherhood, so it has been a worthwhile exercise.  But I don't think I should do it again - the second puppy will have to go to a new home when I find the right one for her, because three dogs would just be too many in our small home, but we have had her for so long that I know we will all miss her immensely.  It's been an emotional wrench parting with all of the puppies, of course, but knowing they are being well looked after has helped a lot.

Well, puppies will keep me busy now for the next couple of weeks - another reason why I won't be getting on with my writing! I will try, actually.  I feel very motivated at the moment, probably because it is the start of a new year.  I love the new year - anything seems possible, and on January 1st I was in a whirlwind of activity.

Then I came down to earth with a bump because the next morning I woke up with a really sore throat and a cold and painful ears... Now I am recovering, which is great, as I thought I was in for a lengthy illness.

So, did any of you need to know any of that? Don't worry. It's a rhetorical question.  Happy New yeR (again).

Wednesday 1 January 2014

Happy New Year

Well, it's been a good start to 2014 for me. Exercise - tick. Healthy eating - tick.  Quality time spent with husband and children, stress-free, etc etc...all good.

Now I just have to keep all those plates spinning for the next 364 days. And try not to feel too bad when I drop some of them, which is bound to happen.

I hope you are all having/had a good holiday. It occurs to me more and more as time goes on (i.e. as I get older) that a lot of the pressure we feel in life is self-inflicted. Certainly in our pampered Western existences.  Here we sit, warm and full, healthy and fortunate. And yet instead of enjoying our lives we complicate them. We worry about our future, about the futures of our children. We convince ourselves that we haven't got enough resources despite all evidence to the contrary, and we try to accumulate more.  Instead of basking in the company of family and friends we complain, we mistrust. We find fault with others and we mock them.  Why do we live like this?

It's not everyone, I know that. I firmly believe that the majority of humans are good, for the vast majority of the time.  I am no better or worse than everyone else - I don't always behave well or think well of others. Although I am acutely aware of my failings nowadays that doesn't stop me failing.

 What I am getting at here is the fact that in the West our collective mental health is not good, and that it is within our power to change that. I am sure that a change in attitude from one person must have a ripple effect on others - if I let go of bitterness, aggression, disappointment and so on, people will no longer react to me in those ways.

 In the year ahead I have decided to work on my mental health by being more conscious of the quality of my relationships with other people. I will keep you posted.