Tuesday, 28 February 2012

Bureaucracy and Red Tape

I have just had the most incredible series of conversations with various civil servants about one of my children's birth certificates.  Apparently the birth was wrongly registered and so the Passport Office won't issue a passport in his name.  But the Register Office refuse to amend the certificate - they say it is fine the way it is.  So I am caught between a rock and a hard place.  Luckily we are not planning to go on holiday in the near future...

Anyway, there is nothing more I can do.  Apparently someone from the passport office will call me soon, and hopefully that somebody will give me some idea of how to progress.  I don't mind what I have to do - attend an interview, swear an affadavit, pay (again) for the birth certificate to be sent off by recorded delivery.  Whatever.  I just want some direction of how to proceed....

Since last week when I was advised of the problem with the birth certificate I have called the local Register Office four times and still not been able to make an appointment with somebody to sort it out.  Today I called the General Register Office and spoke to a lovely lady there, but still came to no resolution.

I do realise though, that the real problem lies in my atttitude.  A more laid back person would just sit and wait for the phone call I have been promised from the Passport Office.  Me, I get agitated and irritated, and restless to sort the thing out. 

What helps or hinders us in life is not the external annoyances, which happen to everybody, but how we choose to react to them.  An over-reaction like mine is wrong: therein lies madness, so having vented my spleen on the subject here I am going to forget all about it now and be completely calm.  Ommmmmmmmmmm................................  

Time to Change

I have had a few long conversations on the subject of mental health recently - the Time to Change people would be proud of me...

They are a sterling organisation, doing extremely valuable work.  Here is a link to more information:

Of course, most of the time I get really positive feedback, especially when I am confiding to friends, and I feel that both they and I have benefitted from opening up.  Because it is a two way process - every single friend I have spoken to has told me about mental health issues that they, or a close family member or friend, has had. 

There have been one or two occasions when things have not turned out exactly as I would have wished from telling people all this.  Sometimes I wish I hadn't emailed everybody I know about my book when it first came out... Paul did say it might not be a good idea at the time.  I suppose I was over-excited at the thought of finally having a book published and I hoped that my friends and acquaintances would read it and understand - whereas some people might have just been frightened off by the title.  'Surviving Schizophrenia: A Memoir' - could have been quite a shock I guess.  In fact, when I first published, the book was called 'Surviving Schizophrenia: A Tale of Sound and Fury' which has even less of a cheery ring to it.

But if there have been one or two people I haven't heard from much since, I am too busy to really notice who they are.  And the reason for their silence is as likely to be embarrasssment as distaste.  And actually some people have read it and been in touch, and they have been just wonderful.  If I hadn't emailed everyone I know at the beginning I might never have got around to telling some people, so no regrets really.

I think if people do get as far as reading the book then they will understand more.  I was a bit disappointed yesterday to find that somebody I had told about it had not read it, and yet clearly had a different opinion of me as a result of just knowing the title of a book I have written.  But that is their loss, not mine.

Sometimes I still don't have the courage to come out with it.  I was talking to a lady just this morning and got a bit stuck at the usual questions of what do you do (I'm a writer) and then what do you write (ah...nervous laughter).  I explained that I write on the subject of mental health, and then we had a really good conversation about a member of her family.  I felt able to contribute usefully, but I couldn't help worrying that I had cheated somewhat by not explaining that I had experienced bad mental health myself.  She was consulting me as an expert, and I felt she might have viewed me rather differently if she knew the title of my book...

Then again, maybe it is a lesson to me that sometimes a little information is enough.  After all, I am rather an expert on mental health - from the inside, which does not make me any less knowledgeable, I just have a different sort of knowledge.  And I try to be dispassionate (although I couldn't help saying that I thought she should keep her sister out of the local mental hospital at all costs!).  I was able to help this lady by providing a listening ear, which will help her to think more clearly now about the situation.  And a listening ear was clearly what she needed - a lot came tumbling out...  She probably didn't need to know the details of my own experience at that point - I will tell her next time we meet of course, but maybe try not to blurt out too much information even then.

In the summer I helped on a Time to Change roadshow.  You may remember me writing about it here.  We had a stand at Bournemouth Pier, and the idea was to involve as many members of the public in conversations about mental health.  We had some training the day before, and were expressly advised not to open up too much - not to put ourselves at risk of stress by over-exposing personal details.  I did overstep the mark on one occasion - told a lovely couple that I wished as a teenager that I had suffered a brain tumour than mental illness - and their expressions clearly told me that I had imparted rather too much information.  Poor things!

The worst criticism that can be levelled at me - and has been - is that what I am doing is not fair on my children, and will negatively impact on them in the future.  I have thought this through, and it has actually made me more determined to continue with my course of action.  I am doing this for the children, as much as for myself.  If anybody does not want to know them as a result of my writing, then I am helping them weed out the wrong sort of people from their lives.  And in fact, I don't think there will be any such deleterious effect on my kids. 

The point of what I am doing is to help to de-stigmatise mental health issues, so my being open now will enable more people to be open in the future, until eventually the Time to Change campaign will have worked and mental health will be as respectable a topic of discussion as physical health.  Which will help people so much - if fear is taken out of the equation, the problem can be tackled so much more easily.

So, I am becoming more open now, rather than less.  I don't resent the feedback about the kids - it helped me to focus more clearly on what I am doing and why, and I am now able to dismiss niggling doubts with added certainty that I am on the right path.

And my book is doing really well - reviews are continuing to come in, slower than I would like, but from members of the public who say that I am changing their view of mental health and helping people - which is exactly what I wanted my memoir to achieve.  Look at this:  I am currently in the top 2,000 (out of an awful lot of books on Amazon).  Here's the link to prove it:   http://www.amazon.co.uk/Surviving-Schizophrenia-A-Memoir-ebook/dp/B0057P6M46

Although if you don't look until tomorrow things may change - ratings are fickle, which is why I try not to obessively check them more than - oh, about twenty times a day.  Guess what I am going to do next...

Sunday, 26 February 2012

Ron Unger - another good man

This is so worth a read


Dr Hugh Middleton on Mad in America

On my post of a couple of days ago, 'Juggling', an anonymous comment led me to Hugh Middleton's article on the Mad in America site.  I just got around to reading the piece, and it is indeed hopeful - Dr Middleton sees that the system is badly failing people, and makes the point that as a result young medical students are increasingly reluctant to specialise in psychiatry.

A comment at the end of the piece, by somebody who seems to be blaming psychiatrists for causing the problem, seemed to be slightly unfair.  The person who commented says that there are plenty of medical students in America wishing to specialise in psychiatry, because it is a lucrative practice.  This may be true, but I would be surprised if there are many medical practitioners (if any) who don't at least start their career by wanting the best for their patients - although over time it is perfectly possible that they become disillusioned or somehow immune to properly understanding the human factor in mental health breakdowns. 

So I couldn't resist adding my thoughts to the mix, and made myself smile in the process... here's the link: http://www.madinamerica.com/2012/02/illnesses-like-any-other-the-challenge-of-a-multi-disciplinary-approach-to-mental-health/

I always had a lot of respect for doctors - that is probably why I took the pills for so long... But I was thinking about that today - and it occurred to me that really they are not that special - they just chose to study medicine, instead of another subject.  They are not Gods, after all....

Nowadays, it is much easier to acquire knowledge through the internet, which evens out the playing field quite a lot.  But we still need to follow certain routes when we are unwell, and it is useful to us if we can start from the point that medical professionals are there with the intention of helping, although they may be misguided in their application of that help.  Of course, there is no harm in healthy scepticism (I have realised since reading today's Mad in America column by Bruce Levine http://www.madinamerica.com/author/blevine/  that I am definitely anti-authoritarian)  but we should not let this blind us to the good in people.  We all need to educate ourselves and each other, and then maybe one day the system will change - both from the inside out, and from the outside in.

Saturday, 25 February 2012

A Sunny Saturday

It has been a lovely sunny Saturday.  We all piled into the car this morning and went on a drive to a village on the outskirts of Dorset.  The ostensible aim was to go to an arts centre, where there was a kids' toy and clothes sale and a cake sale.  Luckily, the real aim was just to go on a family jaunt - luckily, because the sales weren't up to much.

We bought the kids some new bath toys and DVDs anyway, then sat outside the arts centre in a little park and ate a picnic I hastily cobbled together from the nearby supermarket.  A french baguette, still warm (gluten free bread for me, boo) quality crisps to stuff the bread with (I know 'quality' and 'crisps' are terms that do not go togther, but sometimes I choose to overlook the fact) some spring water, some oranges... Paul and I watched the kids playing in the park, and all was good.

The glow continued when we reached home - I walked the dog on the beach (the others stayed home and watched spy kids) - and happened to bump into my brother and sister-in-law walking their dog, so I had somebody to chat to, which enhanced the experience and encouraged me to go further than usual.   

I guess the correct balance in life lies somewhere between doing enough work to feel useful and having enough leisure time to appreciate life for its own sake.  I have been a bit out of synch with this recently (probably why I succumbed to the cold germs last weekend, which have hung around all week).  I am either at the computer or manically trying to stuff the washing machine full of dirty clothes, or emptying the bin or doing the school run....sorry, I won't go on.  Even when I walk the dog or read a book I am trying to do it all at speed. 

So I have decided to slow down, to appreciate all that I have.  And the major change I am going to institute is to go out as a family for one day, or part of it, every weekend.  I am plotting a trip to a theme park next Saturday, so will leave this now and go to investigate whether the place is open for the new season yet.

More soon.

Thursday, 23 February 2012


I gave away a thousand books on my free promotion day yesterday - I am delighted to think that my book is being so widely read, or at least widely downloaded.  I have received two more reviews in the last couple of days, which is also great.

I am still working towards getting a print copy out there.  I just need to do one final edit.  On the Kindle there is lots of white space between paragraphs, but in a print book this would look odd, so I am busy closing up all the spaces.  Paul finds this frustrating - he wants me to just do it by word processing, but I see it as an opportunity to catch a few more typos on the way.  No matter how sure I am that I have got every tiny typo, another one always seems to find its way through.  And I hate that!

Anyway, the print book should be out soon.  I am going to do it on Amazon CreateSpace - seems like a good option, no wastage...  Apologies if I have written about this before.

I have been checking out the Mad in America site regularly, partly because there have been a few comments there on my recovery story, and I want to keep up with the replies.  Every time I look at the site, I get sucked in - there is so much quality information up there, all regularly updated, and new articles each day.  The site is also really easy to use.  We need a 'Mad in the UK' offshoot...

Here's the link to the Mad in America site again: http://www.madinamerica.com/  (It's on the left hand side of this page too).

I am racing against the clock today, even more than usual.  I need to head out to the shops, and the library.  I want to work on my recovery book.  I have a new job application form to fill in (for the same job because the old one got lost).  I have been sent an invitation to join a writer's network which I need to check out.

All those balls to keep juggling.  Oh well, one thing at a time.  Deep breath.     


Wednesday, 22 February 2012

Free Book again today


Here's the link http://www.amazon.co.uk/Surviving-Schizophrenia-A-Memoir-ebook/dp/B0057P6M46 to my book, which is free again today.  I am also proud (very proud!)  to announce that my recovery story is featured on the Mad in America site, so here's the link for that too: http://www.madinamerica.com/

Have a good day!

Monday, 20 February 2012


This article, which I found by following a link on Rossa Forbes' blog, 'Holistic Recovery from Schizophrenia' says just what I feel about diagnoses, much more articulately than I am ever able to articulate!  I might try to commit it to memory. 


What Happened There?

I recently applied for a job but had not heard back from the organisation.  I had already been more or less offered the work verbally, but I knew I had to formally apply and be interviewed.  I hoped it was just a formality.  But when I did not hear back from them I started to worry - last week I wanted to phone them but forebore because I didn't want to make it seem as though I was pressurising them, and I knew that they must have had plenty of applications. 

I phoned their office today.  To my surprise they had no record of my application - they had never received my completed form.  I clearly remember posting it - I posted another letter at the same time, a form to a Government department, and also picked up some passport application forms.  I remembered talking to the lady who gave me the forms and took my letters.  She had queried something on the envelope of the job application one.

I was very polite on the phone, of course - it was clearly nobody's fault - but I did privately wonder whether the organisation I had applied to for work had somehow lost my application form.  The lady on the phone said she would send another, I thanked her, and that was that.  But then the post arrived - and with it a letter from the Government department I had written to, saying they had not received the form I sent them.

Clearly then, something had gone awry at the post office.  I have never experienced anything like this before - problems with the post, yes, but not two important letters, both handed over at the counter, seemingly disappearing off the face of the planet.  And then I started to worry - what if I had lost my chance of the job, and it had been given to somebody else?  I phoned somebody I knew at the organisation and tried to explain what had happened.  I phoned the other people too, the civil servants, and asked to be sent another form.  They were all very understanding, but I still felt a bit wrong-footed and slightly embarrassed because I was aware of the unlikelihood of the scenario I was describing.   Why, I couldn't help feeling,  had this happened to me?

Anyway, it did, and I am sure it will all work out ok.  At least I phoned and found out that the application form had been mislaid.  And the job, as far as I know, is still open. 

I am so looking forward to being a part of the working world - it is one thing to be working by myself at home, it will be quite another to be venturing out and applying my skills in the workplace.  I will only be employed part-time, probably for just a few hours a week.  So I will still have time to write and to look after the house and kids - it will just be good to be able to consider myself officially a working person as well as everything else.

Watch this space! 

Saturday, 18 February 2012

Colds and Schizophrenia

I have a rotten cold.  I managed to walk the dog this morning, but found myself ambling along rather than marching as I usually do - the walk took literally twice the usual length of time.  It felt odd, wandering about like that - and my thought processes also felt numbed, much slower than usual.  Generally as I am walking I have a million ideas crowding my mind, and often nowadays I note them down on my phone, intending to do something with them later.  Then I forget, and chance upon them weeks later, 'Me, you in a crowded room/You keep staring at my shoes' and think, what on earth was that about...oh yes, I started to write a poem about claustrophobia.  Must get back to that one day...  But no interesting thoughts or snippets came to me today.  I decided not to fret about it, but to just enjoy the sunshine and the surroundings.

I have been teaching a writing class - well, more of a writing group, just some friends.  We meet in a lovely location, with an amazing view out over the river, and write for a couple of hours once a fortnight.  I set exercises and we all write them, and have a coffee and a natter half way through.  I suppose, really, I have realised a dream - I always wanted to be a teacher and now I am, in my own small way.  Anyway, although the groups are only fortnightly they seem to creep up on me very quickly, so this afternoon I asked Paul to look after the children while I shut myself in the kitchen to do my 'homework' while I cooked the dinner.  I feel it is only fair that I should do the homework I set for the others.  I also intended to write up a lesson plan for the next class. 

Two hours later I have just finished my homework and am very pleased - not because it is very good, but because I have written a whole poem for the first time in ages and that feels like an achievement.  Also because I did get my brain into gear after all - on the dog walk I felt as though I wasn't able to fully function, but all I needed to do was to sit down and force myself to concentrate.  I haven't done the lesson plan, but can do that this evening when the children are in bed.

I'll put the poem up here in a week or so once I've had another look at it.

That's all for now.  More soon, when my brain is functioning properly again.

Oh, my poetry book 'Mudeford Quay and other poems' is free today on Amazon Kindle.  Sorry, I should have mentioned it earlier in the day.  Here's the link: http://www.amazon.co.uk/Mudeford-Quay-other-poems-ebook/dp/B005BVL66U

Wednesday, 15 February 2012

Chemical Sterilisation or Castration?

I am writing this response to Rossa Forbes' (Holistic Recovery from Schizophrenia) comment on my last post.  I started writing this as a comment, but it wouldn't publish as a comment because there were too many characters in the HTML.

Rossa: this relates to something I wrote about in my memoir - that my prolactin levels were too high for me to conceive due to the medication I took throughout my 'day hospital years' and not only was I not told about this, I was expressly told the opposite when I asked about starting a family with my then fiance; that the medication was no barrier to conception and was safe to take during pregnancy.

I was on Risperidone; a very low dose of it at that time.

I am pretty sure that I am not the only person this has happened to.  I realise it is quite an extrapolation to suggest that it is a common occurrence.  I am sticking my neck out, I know, to suggest that there is some kind of psychiatric conspiracy to prevent people with a mental health diagnosis from conceiving, but I cannot believe that this information was in the public domain (I was lucky to chance upon in a small paragraph of a health magazine that said certain types of medication can affect prolactin levels and it rung a bell) and that the psychiatric staff did not know anything about it.

It is not long at all since female mental patients in this country were literally sterilised as a matter of routine (fifty or sixty years?) although this seems almost unbelieveable now.  So perhaps it is not such a leap of the imagination to conclude that there is an unspoken chemcial sterilisation still happening - or, at least, that it is seen as a 'lucky' side-effect of certain medications?

When I found out that my prolactin levels were 'sky high' as the GP put it, that GP referred me to an endocrinologist, and I tapered off the medication under her supervision.  Then I had to take another medicine to kickstart ovulation (I can't remember the name of it but I only took it once a day for five days - it is quite a commonly used drug for that purpose).  Then I was able to conceive (I had married by then).  I lost the baby (I think a first pregnancy very often results in miscarriage and although I was devastated at the time...anyway, don't want to go into all that again just now).  I don't think the pregnancy failed because of the prolactin thing and it is good news that the barrier to conception caused by the medication was reversible. 

A year or so ago I spoke about this to my friend who is a psychiatrist - she was not shocked at all when I told her what had happened to me.  When I asked if she didn't think it was wrong per se, she clearly did not - I did not like to press her on the subject, but I know she deals with some very disturbed teenage girls and it would be seen as a catastrophe if they were to conceive, so the medics are probably quite pleased that this is a side effect of the medication.  As with mental patients generally.

If you look at my post from 24th January, 'Schizophrenia and Transport', under the comments somebody else has said that high prolactin levels render men infertile too (she has written to me a few times recently; like you, her son has been ill, in his case he was extremely badly treated by the system).

I have referred to this 'chemical sterilisation' of women before, but I had no idea that it happened to men too, as a sort of 'chemical castration'.  I think it is a total scandal - and no, I have no proof, except what happened to me and the fact that nobody I know who takes psychiatric medication long-term has ever had a baby, added to the fact that my friend the psychiatrist was not surprised and did not try to deny that medication is used in this way - or that the medics are secretly quite pleased about this particular side-effect of the drugs and deliberately do not communicate it to patients.  Even when directly asked! 

I thought she would deny it immediately and tell me that my case was very unusual - she did not. As I say, I didn't press her on the subject - she is a good friend of mine, a lovely person, and clearly believes strongly in the branch of medicine that she practices; she takes medication for her own bi-polar disorder (although she has had several breakdowns in the ten years since I have known her, which goes to show, if we didn't know already, that medication is not the answer.  But I can't bear to tell her I think that.  Who am I to do so?)

Actually, one girl I met in the day hospital did have a baby, but her sister (who was also a patient) told me that she never took her medication.  I am not sure what happened to her and the baby - they were taken to a mother and baby unit to see how she managed. 

So Rossa, yes, I am jumping to conclusions perhaps, ruled by my emotions to some degree, but I think I have some foundation for my convictions.  I would love it it I was proven wrong - or if I was proved to be right and some action was taken as a result.  Mental health patients have so few rights, and it seems so unfair to take away their chances of a normal life. 

Do look at the comment on 24th Jan.  If anybody else has any information, anecdotal or not, I would love to hear it.  Let me know if you do any research and find out anything Rossa - I am itching to go to Google now but have to feed the kids!  (The four gorgeous, amazing, lovely, sweet and wonderful ones who would almost certainly never have existed if I had not chanced upon a tiny paragraph in 'Health and Fitness' magazine about fourteen years ago.)  x.

Tuesday, 14 February 2012

Half-term Holiday

Our family are enjoying the half-term holiday.  I love having the kids off school.  The weather has suddenly become more clement, and there seems to be no urgent need to do anything in particular - so we can go for long walks with the dog, or have friends around, and just let time pass. 

Until I remember that I have a blog to write, turn to it and realise that it has been three days since I wrote a post.  And also that it has been quite a few days since I wrote about anything except domestic matters.  So how is this a mental health blog, I hear you ask (I have eagle ears).

Well, it is and it isn't.  I have a diagnosis of schizophrenia, but that is something that I have recently decided to dismiss.  However, although I could say that I am better now, and leave it at that; get a job perhaps and put the whole thing behind me, in all conscience I can't do that.  Because then I would be turning my back on all those people who are still suffering from the effects of mental illness, or the effects of the diagnosis they have been given, or both.  And this would not be fair.

By standing up for what I believe in, by saying, yes I was extremely ill but now I am better, I am in a position to help others, to give them hope for their own futures.  By pointing out that the label of schizophrenia is an unscientific and nonsensical way to write off people's lives - that telling people they have a 'brain disease' that they will never recover from is wrong and cruel, I am not saying anything new or revolutionary, I am just adding my voice to thousands of others out there.  It helps though, that people can look at me and say,'Yes, she seems quite normal.  Perhaps it's true, perhaps recovery from schizophrenia is possible'.

If I was to say, well obviously there was a mistake, and I was misdiagnosed; I was not as ill as they thought I was, I am not schizophrenic and never have been, then I would be acting immorally.  I know I was extremely unwell, the diagnosis I was given was the one that fitted - but in my opinion it was wrong for all that, and not just for me but for everybody who is labelled schizophrenic.

I have stated this sort of thing before, quite frequently on this blog, but people still seem to misapprehend what I am saying, and that bothers me.  There is a school of thought - perpetuated by the medically trained, who find it hard to accept other viewpoints - that the diagnosis of schizophrenia is useful as all diagnoses are, because once the correct label for an illness is found, the correct treatment can be applied.

This is so untrue.  Perhaps it is true of a broken leg - the leg can be x-rayed, the problem clarified and a diagnosis given, the leg splinted or plastered, or whatever they do.  But a mental illness is just not quantifiable in the same way.  A state of mind does not fit into a box that can be ticked, 'This sort, or that sort'. 

And the treatments are ineffective and damaging.  There is no drug that can 'mend' schizophrenia.  The same 'anti-psychotics' - basically major tranquilisers re-named anti-psychotics for marketing purposes - are used for schizophrenia, bi-polar disorder, all sorts of nebulous conditions such as 'Schizo-affective disorder' (which seems to be to be a name for 'it could be schizophrenia or bi-polar or a bit of both').  It is really not good science.

There are no easy answers to the problems of how to recover from mental health problems.  Well, perhaps there are - rehabilitative programs such as Soteria have helped a lot of people.  For myself, recovery has occurred through the medium of the family and home.  I have found a sense of security and self-esteem through becoming absorbed in these things.  I have been immensely lucky - but this path is closed to many (partly because anti-pschotic medication prevents conception, a scandal in itself because this fact is not communicated to the people who are forced to take it, or scared into taking it because they are warned that they will otherwise become unwell). 

When I look back on my life I am grateful for everything that has happened - I have learned a lot about myself and about life.  I had some lessons that nobody would ever have enrolled for, but which I think I benefitted from.  I wouldn't change a thing.  But I do sometimes think that there could have been a quicker path to health; I am forty-three now and have only just learned to combat the anxiety that I now realise lay at the root of all my problems.  What a simple thing - if only I had tried to tackle it a long time ago.

If any of my loved ones ever became mentally unwell I would want a faster path to recovery for them - no label, no shame, just understanding, support and help to become stronger.  So this is why I am continuing to shout from the rooftops:  THERE IS NO SUCH THING AS SCHIZOPHRENIA!  NO-ONE NEEDS TO BE MENTALLY ILL FOR EVER!

And hope I don't get sectioned. 

(I am not actually shouting from the rooftops, don't worry: unlikely to get sectioned, today at least).  X.

Saturday, 11 February 2012

A Funny Few Days

I have been down in the dumps a bit, since I fell the other day when I was walking the dog.  A couple of days ago I pulled a muscle in my shoulder when I was putting my coat on, and then accidentally locked myself out of the house... Then I woke up the next morning with the beginnings of a cold.  And it has been so darned freezing recently - that doesn't help anybody's mood.

Anyway, today I stopped moping.  Paul and I had to ferry the kids around a bit this morning - a cake sale here, a birthday party there... I actually quite enjoyed the being out and about.  Most of the time I am at home in front of the computer these days, except when I walk the dog, so it was just nice to circulate.  Then this afternoon Paul had to go to work, so I took the children and the dog to a local beauty spot.  And it really was beautiful - the views were just stunning.

I read an article about George Clooney in the Times today - I think he was publicising his latest release, The Descendants.   Apparently, he is living in constant pain, since he injured the base of his neck a few months ago.  And I thought - gosh, George Clooney, who seems to have it all - I actually feel sorry for him.  All I have had to contend with - for months - is a minor muscle sprain, and I was readly to cave in with misery and self pity after just a day.  So that puts it in perpective.  And all my aches and pains are subsiding already anyway - by tomorrow I reckon I will be as fit as a fiddle.

So, I have decided to appreciate life more, from now on.  Just spending time with the children is so wonderful - there is so much to be grateful for.  It is the half term holiday now, and I am going to make sure that we all have a break to remember.  And before we know where we are, spring will have sprung once more. 

Friday, 10 February 2012

Memoir at a new reduced price

My memoir is now available at a reduced price: £1.95, down from £5.45.  I don't know how long it will stay at this price for.  I was hesitant to reduce the price in a way - it took me many years to write the book and I think it is worth a fiver...  On the other hand, I want the book to be read and my main aim in writing it was to help other people who have suffered mental health problems to have hope for the future - hence the free promotion days every couple of weeks, when I tend to go mad on Twitter and Facebook, and all the mental health charity sites, encouraging people to take free copies. 

I like self-publishing - I like not having to wait on anybody else's decisions and the control it gives me over my own work.  However, I have been seriously considering getting an agent over the last few days, to free myself up from the marketing aspect of things.  I hate self-publcity (although I am getting used to it).

Anyway, instead of looking for an agent right now I decided to lower the price of the book, so that hopefully things will move faster, and I won't need to do so much promotion.  The lower price is for a limited time only, but I am going to see how things go, and decide my next step accordingly.

So, grab a copy, if you want one, or tell your friends if you think they might.  Here'e the link: http://www.amazon.co.uk/Surviving-Schizophrenia-A-Memoir-ebook/dp/B0057P6M46

 Have a good day!

Thursday, 9 February 2012

Schizophrenia and Medication

I am sure you will all be pleased to hear that I feel well this morning.  Went to bed a bit earlier than usual, after a quiet evening in front of the TV.  No dizziness today to speak of, although I still ache slightly from the fall.  I have come to the conclusion that I need more rest - once I sit down at the computer I seem to grow roots, fiddling around with this and that for hours on end (rarely any extended 'real' writing these days, which might actually be relaxing).  I think I have been overdoing things.

So, no need for a trip to the doctor today after all.  The doctor would not have been able to tell me what I have figured out for myself - all she would have been able to do is check my blood pressure, and maybe if she was concerned she would send me off for a blood test, or if she was very, very concerned, a brain scan.  I have saved myself, and at least one other person, time and trouble.  And money of course - the NHS is free from the perspective of the consumer, but the lack of payment is a bit of an illusion.  We all pay, sooner or later, in one way or another.

I have a good relationship with my GP.  She takes my worries seriously.  She knows my physical health has not always been good - my main weakness over the years has been a susceptibility to chest infections, and I have needed a lot of antibiotics to clear them up.  (Of course they always returned and then needed treating again).  I have also had niggling worries over the years, and every now and again I will be sent for an x-ray or a scan of some part of my body, which fortunately always turns out to be alright.

In the last few years, I have learned to take a calmer and more balanced attitude towards my health.  I know a chest pain can signify an impending heart attack - but in my own case the one thing has not yet followed the other.  I decided to stop taking antibiotics for chest infections - in fact, I decided to stop getting chest infections.  I took preventative measures - took a good look at my diet, bought probiotics (acidophilus) which I take regularly.  Slowed down, listened to my body more.  Took steps to get a more positive outlook on life.  Got a dog.  And these things have had a bigger impact than I ever imagined - I am well almost all of the time these days.  (After thirty years of pretty bad mental and physical health, I think I deserve this).

Whenever I went to the doctor, although I was aware that my symptoms might be in my head as much as in my body, it still didn't occur to me that medicine might not be the answer.  I trusted the doctor to be the best judge of what I needed.  So I would be reassured when I was sent for a scan, which showed me not to have some serious problem - but the symptoms would not just disappear, or if they did then another part of my body would then seem to be malfunctioning.  There was always something wrong with me - I think now that the external symptoms were indicative of an inner disorder, and the fact was that I always felt that there was something wrong with me.  (I hope I am expressing this clearly.  I always try to be as clear as possible, but what I am trying to say here is in itself slightly abstract.)

In the last year or so, added to my belief that I am the best monitor of my own health, is the beginning of a slight aversion to being looked after by somebody else.  I did not have a nice time in hospital after my bunion operation last summer.  I hated being physically helpless, and did my utmost to look after myself throughout (which involved some awkward times with the bedpan and commode for the 48 hours when my legs were completely numb).   And there is something else, which I have not mentioned before, for fear of being thought paranoid.

Before the operation, I told the surgeon and anaethestist about my mental health diagnosis.  This was because they expressly asked me, when they filled out their questionnaires.  I wish now that I had not told them, because I am almost sure that when I came round from the operation I was given some kind of tranquilising or anti-psychotic drug.

What happened was this.  Before I was put under I was given an anti-sickness drug.  When I woke up I felt nauseous.  I told the nursing staff, and they waited by me for a while, in the recovery room.  The anaesthetist arrived.  They were making conversation with me, I felt weak but did my best to talk to them as normally as possible.  After a while the anaesthetist said something to the nursing staff, and then he went off.  The nurses said they were giving me something for the sickness.   They then administered two drugs - through the drip that was still in my hand.  They put some from one syringe, then some from the next, then the first again, then the other. 

I didn't want to ask about what was going on.  I feared at the time that they might think I was not fully sane, and I didn't want to appear paranoid by questioning what drugs I had been given.  (This is a fear I have had almost constantly for the last twenty odd years - that people will think I am not normal, and it often prevents me from behaving normally!)

Anyway, I did not feel at all well after I was given those drugs.  I still felt sick, but because I was not actually sick I was taken up to the ward.  I also began to feel panicky, but I kept myself under control.  I reminded myself that there was no reason to panic, and that I would gain nothing by doing so.  When my Mum arrived to visit later I said to her, 'After the operation I felt like screaming and crying' and the staff nurse (the same one who had stood by when the medication was administered) said, 'Sometimes the drug that you were given has that effect'. 

I was not quite right for the rest of my stay in hospital.  I suspect it was the drug, or drugs, that I was given.  I was also aware that it might be my paranoia about the drug that I had been given, and that is my problem - I never quite trust myself.  I didn't want to ask any questions about what I had been given, partly because it was too late (shutting the stable door after the horse has bolted) and partly because I didn't want to seem suspicious.  I was in hospital for two nights after that, and I hardly slept, which didn't help my state of mind. 

Because what I haven't told anybody until now, is that my thoughts were definitely disturbed at times.
 I have not told anybody that before, because I didn't want anybody to overreact.  I was in control, I could just see that there was a possibility of losing the plot, which would actually be made more likely if I had confided in anybody at that time.  It was not a normal feeling of stress - it was something else, something actually slightly deranged (!) and I am positive that it was drug induced, but equally positive that the nursing staff would not have agreed and would have called in the psychs if I had told them what was happening.  This has happened to me before, and it is enough to drive you around the bend, without any other factors.  The diagosis of schizophrenia really does cause other people to behave differently - even medics, who should know better.

Most of the time I was fine, fortunately.  I had a lovely neighbour in the next bed, an ex-nurse, and I felt reassured that she was there - we talked and laughed together about all sorts of stuff.  Paul visited, and the kids, and it was lovely to see them.  Nobody noticed that anything was not quite right with me, which was a good thing in the circumstances. 

I am not good with drugs.  I hate their effect on my mind, and I think I am actually more sensitive to them than most people.  One night I was given morphine when I complained about pain, and then I had a panic attack (a quiet one, I didn't behave abnormally at any time while I was there).  I just wanted and needed to get out of the hospital - I knew when I got home that I would be fine, and I was. 

I have written all that to give a clearer picture of my attitude to medical things generally.  I am not trusting enough to be a good patient - although I gave a very good impression of being a good patient in hospital this time.  I just want to be independent, to get home, to be left alone.  And because of the diagnosis I have been treated differently for so long that matters have got even more confused.  Anybody else would have felt able to say, 'That drug had a really strange effect on me.  What was it?  Why did you only mention one drug when it was administered through two separate syringes?' 

Me, I think all this stuff, but don't let on, because if I do I think they will think I am mad.  Which they would, because it is there in the notes.  SCHIZOPHRENIC. 

I don't even want to ask now - well, I do want to, but I have no hope at all of discovering the truth.  I have asked to see my medical records on three separate occasions over the last ten or so years since I first embarked on writing my book.  I wanted to check details about medications and so on.  I have gone to the trouble of finding out the correct person in the local NHS Trust to ask, and writing her a letter, three times, and not even received a reply.  I assume that because of my diagnosis it is considered to be bad for my mental health to let me see my notes.  I will probably find the strength to challenge this one day, but I have more important things to be getting on with for now.

Like having a cup of tea.  I have been at the computer for long enough now, and it is time for a break.  More, as usual, anon.  And on.

Wednesday, 8 February 2012

Schizophrenia and Concussion

I haven't got concussion, by the way.  I did fall over when I was walking the dog yesterday, but I didn't hit my head. 

I was being a Good Samaritan.  A lady was standing with her dog, both peering helplessly into the bushes so instead of walking past blankly I stopped to ask whether she was ok.  She had accidentally thrown the dog's ball into the hedge and couldn't reach it, mainly because the hedge was full of brambles.

'I've got gloves on,' I said.  'I can do it'. 

She trod on a bramble, I pulled some others out of the way, dived in (it wasn't easy) and picked up the ball.  I felt pleased with myself when I grasped it, but then for some reason I let it go.  It fell further forward, well within reach, but I remember being vauguely annoyed that I had dropped it.  My next thought was rather different - I was about to hit the ground.  I have no memory of why I fell.  I only noticed I was falling when I was very close to the ground - I remember reaching out with my hands to break my fall, pulling myself up to sitting quite quickly, then remaining still on the ground feeling the world spin around me. 

So much for being a Good Samaritan.  The other dog walker was very concerned - wanted to help me get up, but I said I would rather just sit there for a moment.  I felt so foolish.  When the spinning stopped I got up as quickly as I could, and limped off.

The main thing I thought was how old I suddenly felt.  It had all happened so quickly.  This must be how old people fall - unexpectedly, with no awareness.  Unable to figure out why, except that they must be getting old.  It was also a reminder of how unpredictable the world can be - one minute we are fine, the next we are all shaken up, and there is no way of knowing in advance.  I decided that my foot must have become tangled in the brambles as I tried to stand up - although there hadn't been a bramble around my foot when I looked.  I needed an explanation.

I brushed the thing off, but I must have been shaken, because I was out of sorts for the rest of the afternoon.  I went to my book group in the evening, and had a good time, but at the back of my mind something still felt not quite right.  By the time I got home and went to bed I felt dizzy and had a headache. 

I woke up fine.  I have some bruising on my arm and back, but I always bruise very easily.  I am a bit achey and stiff, but I knew that would soon wear off.  But then I dropped a magazine in the hallway, and had to bend down to retrieve it.  The dog rushed up delighted, sniffing and licking around my head.  I laughed at her, started to stand up - and felt dizzy again.  And I have been dizzy for the rest of the morning since. 

I tried to make an appointment with the GP, but the line was busy.  And actually I am quite glad I didn't rush down there.  I think I either have low blood pressure (I usually do) or an ear infection.  Or - I have psychosomatic symptoms.  This is something I always try to assess before I visit the GP.  Can they do something practical to help?  If it is low blood pressure, then no - if it is an ear infection then yes.   Fifty fifty each way.

 And - this is the big one - if it is just in my mind?  I have found over the years that a lot of stuff has been in my mind - that I am overly tuned in to the vagaries of my body and I tend to exaggerate the seriousness of what I am feeling.  The fact that I have been through the psychiatric system affects my attitude to medicine - I will explain this properly in another post, when I am feeling more compos mentis.

At this time of year the surgery waiting room is likely to be packed with people suffering from colds and coughs and other viral stuff.  Toddler and I would have to wait in there for an least an hour, putting him at risk of catching something (and then spreading it to the rest of the family, just in time for the half term holiday).  And the likelihood is that I have nothing seriously wrong with me at all.  Even if the dizziness is from the after effects of the fall, it will soon wear off.  If it is an ear infection making me dizzy, and that is why I fell in the first place, I will survive until tomorrow.

I won't go swimming though.  I had an infection in my inner ear (or was it middle ear?) once, called labyrinthitis.  The GP who gave me antibiotics said that the biggest danger of an infection like this was that you were likely to lose your sense of direction if you were swimming underwater - you would think you were heading to the surface to take a breath, but end up just going deeper and drowning.  I shuddered to think of this - I have always been a regular swimmer and even now I like to swim under the water sometimes, to see how far I can go without breathing.

Anyway.  I find that I keep in a lot better physical shape these days if I stay away from the doctor's surgery.  So I am going to have a nice quiet day at home with Toddler - lots of rest, plenty to eat, and I am sure that I will be fine.  If not, I will go the surgery tomorrow and get checked out. 

Apologies for the me, me, me tack of this post.  I always get like that when I feel under the weather.  Normal service will resume soon.

Sunday, 5 February 2012

Schizophrenia and Disability Benefits

A hundred pounds a week in perpetuity in exchange for a label of perpetual lunacy.

I have just been reading about disability benefits on a blog written by a psychiatrist who seems rather thoughtful and understanding.  This is a subject that obviously stirs up interest - there were a lot of comments to read through at the end of the post.

Here's the link: http://thoughtbroadcast.com/2011/12/28/the-curious-psychology-of-disability/

It is an American blog, and obviously the medical system is rather different over there.  Being on disability benefits does not just mean you get money from the state - it also entitles you to medical care if things go wrong, something you would only usually get if you paid private healthcare insurance.  We still have the NHS, bless it, although I know for a fact that if I had been treated in a private hospital, with proper care, I would have recovered a lot better from my first breakdown, and maybe not gone on to have further breakdowns.  Don't ask me how I know - I just instinctively do.  There are some things money can buy.  Like dignity.

Anyway, the psychiatrist made a valid point, that people who consider themselves disabled put themselves at a disadvantage, and he is right.  He was writing about his patient, who was improving and yet who surprised him by putting in a claim for disability benefit, which he was expected to endorse.  He was reluctant to do so.  He would rather have seen his patient get better and return to work. 

I was surprised that the post generated so much discussion.  Duane Sherry (a great writer, see his site Discover and Recover) jumped in to say that the psychiatric drugs themselves disable people (which is true).  Other people made other valid points.  But I agree that yes, the disability system is messed up.

I should not really have been on benefits for all these years.  But, with the diagnosis of schizophrenia that I had been given, I had no choice.  Even though I recognised that I was better than I had been told I would ever be (not on medication, no symptoms, didn't seem to be deteriorating twelve years after my last breakdown) I knew I was not equipped for the workplace.  Because nobody was about to take that diagnosis away and nobody would employ me with it.  And also because I had no confidence that I could cope in the workplace, because I had been told that I was a schizophrenic and I believed it.

I had accepted my limitations.  It never occured to me to challenge the diagnosis.  I quite liked getting the disability benefit - it stopped me worrying so much about money.  It paid for the kids' piano lessons, and shoes, and outings to theme parks.  I kept very quiet about it though - after all, if people found out I was on benefits, I could hardly explain why - I was never in a million years going to voluntarily tell anyone that I had a diagnosis of schizophrenia.  What was I, mad?

Finally, I have found a way out of this paradox.  I have made a little money from writing - not a fortune, but enough to encourage me to believe that from now on I can support myself and leave the disability benefit behind.  And what a relief that is!  The guilt I have felt for all these years has been overwhelming.  I have often spoken to friends who had to juggle childcare with work, and sympathised with them, while knowing I had a secret income which would have greatly altered their attitude towards me.

Our family is not well off, but we are hardly paupers.  I was caught in a trap - without the benefits I would have had to work.  I couldn't face the kids not having the piano lessons or the trips to theme parks.  I would have found it close to impossible to get a job.  I got stressed just thinking about it.  So I stayed on the benefits.

The last time I had a medical assessment was almost five years ago.  I was pregnant with my youngest.  I went into the office and started to speak to the doctor.  I told him I would like to be well enough to work one day.  He said perhaps, when I was much older, I would be able to do a very low key job.  I broke down in tears.  He curtailed the interview, said that it was not good for me to be so upset when I was pregnant and that I should go home and he would fill out the rest of the forms on my behalf and recommend that the benefits continue.

I came home and told Paul what had happened, how I had cried in the doctor's office and how humiliated I had felt.  And do you know what my husband did?  He told the children and I to put our coats on and get in the car.  He drove us to Tesco and then and there he bought me the first laptop computer I had ever owned.  I was too astonished to even be properly grateful.  My husband was usually so careful with money.  But he told me he knew something about me that I hadn't yet properly recognised about myself.  He realised that I had a vocation.

Recently I have learned to stop worrying so much, and I can see that all my past worries about money were not a healthy way to occupy my mind.  I don't blame myself for being like that - I have been very hard up in my time, and because I have been so nervous and anxious all my life almost all of my jobs have been menial ones, waitressing, cleaning and so on.  So I never earned enough to pull myself out of the poverty trap - I had no self worth, and no self belief, as I have said.  It was a vicious circle. 

Now that I am married though, things have changed, and I have changed too.  My family has given me security, and time has healed, and my writing has given me confidence, and...things just go on getting better.  If we have to do without the piano lessons and the theme parks for a while, that is fine.  I would rather have the dignity of work.

My shame about being on benefits has been tied up with my shame about the diagnosis of schizophrenia.  I could see no way out of the trap, so I made the best of what I got - a hundred pounds a week in perpetuity in exchange for accepting a label of perpetual lunacy. 

Now I reject the diagnosis, I reject the notion of my disability, and I am free to make my way in the world.  I am very lucky though, to be able to make a living out of my writing (or to try my utmost to do so, and thoroughly enjoy the trying, and not care if I don't earn much because we are not going to starve after all) because if I was to fill out an application form for a job tomorrow I would be in an awkward position.

Would I lie about my mental health?  How would I cover up all the gaps on my CV, gloss over the fact that although I have a law degree the best job I have ever held was as a customer service adviser in a call centre?  (And I only got that job by - guess what - lying on the medical section of the application form.  On the advice of my friend from University who worked as a solicitor.  'Lie' she urged, 'Or you will never get a job'.  And I lied, probably the only time in my life I have ever knowingly deceived anybody, and I hated having to do so.)

Oh, life.  Life.

Mad In America Site

Just found this site - as usual, can't help wondering why I didn't find it before...  Better late than never.  I would like to add it to the 'Blogs I Follow' list but can't remember how to do it - really annoyed with myself about this.  I am supposed to be learning more about technology, and this makes me feel as though I am going backwards.  Still, it doesn't matter (this is my mantra at the moment).  And I will figure it out soon.

Here's the link anyhow:

Happy Sunday!

Friday, 3 February 2012

Schizophrenia and Children

I have just given in to pressure from my eldest daughter, and let her start reading my book. She is sitting next to me, reading from my Kindle, and in fifteen minutes or so I shall take it from her and let her continue tomorrow.  Alongside me again.  This way she is speaking to me about the book as she reads - asking questions about the meaning of words as well as about the content of the book.  I wish I had read all books alongside her in this way since she was young - we both would have benefitted - but of course there would never have been the time, even if I had not had three younger children.  She reads a book a day sometimes - full length novels, on days when she also goes to school and does extra-curricular activities.

Anyhow, children have to be allowed to grow and mature in their own space and time - my daughter may well have read some things at an earlier age than I would have wished her to if I had tried to keep tabs on such things, but then so did I when I was young.  Each person has to discover certain things for himself or herself. 

This book is different though - this is something we need to read through together, and discuss as we go.  My memoir is something that may change my daughter's perception of the world, as well as of her mother.  I don't think she is emotionally ready for it.  I would prefer her to read it when she is older - sixteen would be my preferred age.  But I have already decided to get her a Kindle for her approaching birthday.  I know that I will find it hard to monitor her reading matter on the Kindle - she has wanted to read this book so badly since I published it that I feared she was likely to find a way to do so without me knowing.

My daughter will soon be twelve.  But she is a mature girl for her age - incredibly so, in some ways.  I was terrified when I told both my daughters about my mental health diagnosis for the first time, perhaps nine months ago, shortly before the book came out.  Both were amazing - partly because the word 'schizophrenia', which held so much fear for me, meant nothing at all to them.  They had no preconceptions about mental illness, and therefore no prejudices regarding it.  They were surprised and baffled that the whole thing meant so much to me, that I had worried so much about divulging the fact that I had once been mentally ill and the name of my diagnosis.  'You were ill, Mummy,' both said.   'You are better now.  It has never affected us'. 

Reading the book will hopefully make things more clear for my daughter - about my experiences, about mental health in general.  And, of course, for her sister and brothers too, when the time is right.  I feel no shame about my past, and I hope that they never will.  That if anybody ever taunts them in the playground about what their mother is - 'A Schizo' - they will be able to reply, 'My Mum was ill, but she is not any more'.  And this will do them good, and their denigrators - there will be a little more understanding in the world, a little less stigma.

Maybe one day the word 'Schizophrenic' will be obsolete, as it deserves to be.  And perhaps my own children will be part of the generation that looks back and wonders how there was ever such misunderstanding and fear and ignorance in the world about such a  perfectly ordinary matter as a nervous debility.

I hope.

I never want to use my children as my flagbearers.  They are wonderful people.  I want their paths through life to be easy and pleasant.  I am sure they will cope with life better than I ever did - I am here to help them to do so, in any way that I can.  But I have thought all this through.  I am their mother, for better or worse - it would do them more harm to be ashamed of me than it ever will to understand me, and by extension to understand others who find themelves in a similar position.

So that's that.  Daughter has gone off to bed now, apparently happy and relaxed.  She says she doesn't want to read any more of the book for another week - 'Why?' I asked, 'Are you not interested?  Is it not well written?'  And we both laughed, because she understands me.  Right on my wavelength, that child.  A job well done.  Perfection in the pod. 

Wednesday, 1 February 2012

Memoir is Free Today

Please help yourselves to a free download of my book from Amazon today.  http://www.amazon.co.uk/Surviving-Schizophrenia-A-Memoir-ebook/dp/B0057P6M46

Enjoy!  And pass the word on to anybody who you think might be interested in a free copy too.