17. 16th October 2016 – The Happiness Box

The Jewish festival of Succot begins tonight.  For seven days the Jewish people eat outside in a small hut (a succah) with a roof which purposefully has holes in it and perform a very odd commandment – shaking a palm branch (a lulav) and smelling an ugly looking lemon (etrog).

The Jewish people are known for being bookish entrepreneurs who are rather useless at DIY. And therefore asking them to make a hut (OK these days you can buy a prefab version but in the olden days everyone had to make it themselves) and eat a meal in it every day is a big ask and way out of most Jews comfort zones.

A rabbi I know explained to me once that a succah is also known as a Happiness Box – Hashem is forcing the Jewish people to go on a camping holiday once a year because She knows it is good for us.  It is good to be outside, protected only by the forces of Nature and appreciate Her presence. And it is also good to feel the presence of Hashem in something odd and peculiar – in a lulav and Etrog. It becomes tangible to understand the Hashem is everywhere – in the unexpected, in the different and in things that we simply do not understand. It actually makes us happy to declutter for a bit, to become aware that to survive we don’t need much and in a very deep sense we experience joy by revealing in the simplicity of life.

During the Shabbat of the middle days of Succot in synagogue we read from the book of Koheles (Ecclesiastes). ‘Futility of futilities! – Said Koheles  – Futility of futilities! All is futile! What profit does man have for all his labor which he toils beneath the sun?’[1] And so King Solomon – the wisest and richest man of the time – goes on to discuss that even though he has riches, women and wisdom, he really cannot see the point of his existence because, after all, everyone dies in the end.  However, at the end of his deliberation Solomon concludes that everyone can find joy in the mundane and the trivial and that performing Hashem’s commandments is the ultimate purpose to life.  Thus the rabbis throughout the ages have argued that, in fact, Koheles is a positive book which can bring joy to this happy festival. However, I have always considered Koheles as the Torah’s (the bible’s) book on depression.  It teaches us that depression isn’t just a scourge of the modern age – inflicted on us by mobile phones, a fast paced life and consumerism – but a very human condition that has existed throughout the history of time.

Benefits news

I have been awarded Personal Independence Payment (PIP) – with thanks to my benefits advocate, who helped me fill out the form. Of course, I had to appeal on what is called a Mandatory Reconsideration, as my first application got refused.  I, along with about 23% others successfully won that appeal. Of those that appealed the Mandatory Reconsideration decision at went to Tribunal 65% were successful in appeal – anyone would think that the government were trying to wear already worn down people down, to save them money.

On the one hand getting PIP is really good news – the money will be useful also if anyone says to me that I am not really ill and all I need to do is take up a new hobby and do some exercise I can say ‘Well if the government think that I have a chronic mental health problem which is effecting my daily functioning and they don’t think it can be easily resolved, why can’t you?’  However, on the other hand, at the age of nearly 40, being awarded benefits for a mental health condition is the very last place that I want to be.

Medical news

Some epilepsy Facebook groups says that people with epilepsy are Warriors – they have to fight a hard battle.  In the past couple of weeks I have had a warrior mentality in my quest for finding an appropriate doctor give me a second opinion on what is going on in my mind – although I believe that Very Important doctor was correct in saying that I have a dissociative disorder – I do not believe that my problem is psychological – I think it is neurological.  Finding a doctor has not been as easy – I look very closely at a potential doctors research interests to see if they are a good fit for my condition.  However, making an appointment with one has been even harder.  At first I tried Doctor From Abroad.  He would not see be because he said I needed weekly therapy for at least six months and I do not think that this is the right appraoch.  Then there was Doctor NHS.  She said she would be happy to see me but I would need to be referred by my GP and my GP said that because her hospital was in a different NHS area from where I lived, I could not be referred (and I she didn’t work privately so I couldn’t pay to see her).  Then there was Doctor Compassion.  I was very hopeful about her because her research interests looked like a perfect fit, but unfortunately she was on compassionate leave until the end of the year.  But good the news is that I found Doctor Eventually. Eventually I have found a doctor who works privately – his research interests are not a perfect fit but they are good enough.  And because he works privately I can see him straight after succot.  He also works on the NHS so that hopefully I can transfer back to NHS care after I have seen him.

The videotelemetry that I had in July shows that although I am not having seizures I do have epileptiform activity (ie susceptibility to seizures) and I have 24 discharges in a day (24 is not considered a lot).  I was also recorded as having 33 involuntary movements in one hour.  I want to discuss with the neurologist my two theories for the problems that I have  – a) that the discharges are having a disproportionate impact on my cognition b) I am having seizures but they are happening deep within my brain so they are not being picked up by the EEG. Of course the doctor might say that something else is causing my cognitive problems.  But the scariest prospect of all is that not even Doctor Eventually will know what exactly is going on in my head.

Succot samaech to all those celebrating!!!  May it be a joyous one for you all!!!

16. 2nd October 2016 – The Days of Awe

This evening the Jewish people begin The Days of Awe.  In the previous Jewish month of Ellul we started to reflect upon our behaviour and ask others for forgiveness. Tonight – the start of the Jewish new year – Rosh Hashanah – we intensify that process by asking Hashem – God – God for that forgiveness and promising to change and finally next Wednesday on  the fast day of Yom Kippur – The Day of Atonement – Hashem makes a judgement on us and we pray that She will respond positively and we will be inscribed in the Book of Life.

This year, through a period of self-reflection and self-awareness I have discovered that I am not good at keeping promises – to make a promise you need to have a memory – to remember the promise that you made – and also to process that promise – so that it turns into action.  However, surely I am not alone at finding promises hard to keep –  but maybe Hashem understands this difficulty which is why She gives us a new opportunity every year (and indeed every day) to start again.

But the first step towards renewal to ask for forgiveness and that I can do.  I first wrote this blog because I started to realise that my behaviour was a bit odd and I thought that everyone around me was noticing – ‘they must think I’m stupid,’ I thought.  And now I realise that very few people, if any, around me were judging me – they just accepted me for who I was.  And so I want to ask those readers that know me for forgiveness, because I judged you too harshly in thinking that you were judging me.

I used to get amused when a driver would give me expletives when I didn’t put my hand up to say thank you when they stopped for me to cross a road. I really didn’t understand it. ‘They did the good thing,’ I would say to myself ‘they stopped driving when no law told them that they had to – why don’t they have the satisfaction of just knowing  that they did a good thing, they shouldn’t need a thank you for doing a mitzvah – a good thing, – they should just do it for the sake of the mitzvah’.  But now I realise that the reason I didn’t say thank you was because my awareness levels are limited and therefore their good act went by without me noticing.  In this situation I was judging the drivers by thinking that they were angry and rude and they were judging me by thinking I was ungrateful.

A wise person I know told me that when you get angry with someone else the anger usually more about what is happening inside of you than about what the other person is doing.  And that has to be true. My issue with the driver of the car was actually about the fact that I hadn’t noticed that they had stopped for me and I don’t know why the other drivers got so angry, but that isn’t my concern – that’s theirs.  And this year, if I remember, I will try not to judge angry drivers and everyone else for all the weird and wonderful things that they do that frustrate or annoy me.  It is only Hashem who can truly judge us after all.

Wishing all my Jewish readers and happy and healthy (both physical and mentally\ spiritually) new year and well over the fast.

 

In other news

When I started writing this blog I didn’t think that what was going on in my head was unusual – I thought it would be quite simple to fix.  As I said I wanted to use this blog as a forum to explain my behaviour and to show people that mental health issues can have just as much impact on the quality of a person’s life as physical ones.  However after seeing quite a few more doctors and perusing many Facebook groups I now realise that my condition is quite rare and it’s going to take a special type of doctor to help me.  I thought I had found my Pot of Gold doctor, who specialised in in my new diagnosis – a dissociative disorder, but it turns out that he is retired and is only taking legal cases.  My hunt for a good quality of life is now going abroad (after all – as any introductory self-help book will tell you – a good quality of life is not about how much money you earn but about what is going on inside your head).  If anyone in another country knows someone who knows someone who might know something about cognition and epilepsy, please let me know. I don’t mind if it turns out to be a dead end – I have had many of those before.  I do have a lead to someone abroad  who seems very well qualified but he is hard to get hold of……

 

PS As I explained tonight we start the Jewish season of lots of festivals culminating with Simchat Torah on 25th October.  Since I am not being paid for these blogs during this period my blog writing will not be as regular as normal, and I am asking you not to judge me too harshly for that xxx

15. 25th September 2016 – Equality for Mental Health and I have a diagnosis

There has been a lot of good work done to get mental health on an equal footing with physical health – for example those who have are mentally ill can now claim benefits and are covered under the Equality Act. However, there is work that the general public can do without the need of the likes of Theresa May and Jeremy Corbyn.  Today I present three ways that everyone can help achieving equality in mental health – through talking about it, through prayer (or thinking about those in distress) and through funding research.

Firstly – by talking about it.  And by this I don’t mean having a heart-to-heart about your problems – although just talking about your difficulties to someone else is obviously very important.  I mean just normalising talking about mental health.  I’m an experienced mental healthite so I was happy to ‘come out’ but if it’s your first time you just hide under a bush in embarrassment because you feel that no-one else could possibly understand (It’s easier to come out as gay).  And that’s a bit silly because one in four people have a mental health problem every year. So you know lots of people  with a mental health problem – they just haven’t told you about it.  In the 22nd century I pray it will be normal for a colleague who you don’t know that well to say ‘How are you?’ and you will feel quite safe to reply ‘I went to the GP yesterday because I was a depressed and he gave me some tablets’. ‘I am sorry,’ your colleague will reply. ‘I was depressed last year – I started exercising and it really helped.  I’ll be thinking of you.  Get well.’

Which brings me very nicely onto the second  piece of work that the public can do – pray/ think about/ send good wishes to people with mental health difficulties in the same way that you would people with physical symptoms.   As I have tried to describe mental health difficulties can reduce the quality of a person’s life just as much as physical ones – and you can also die or be physically harmed by them.  If a friend has a serious physical illness you might say ‘I’ll be thinking of you’ or ‘I’ll pray for you’.  Why can’t the same wishes be sent to someone with a mental health difficulty?  On online support groups for depression and epilepsy often a member will write a message telling the group of their distress and there is a beautiful tendency of other complete strangers to say that they are thinking or praying for them.  And thus we would know if there was equality in mental health if it became common place for those nearer to home sent these type of wishes to their loved ones in distress.

And lastly – donating money to mental health research charities would do a lot to get mental health on an footing with physical health.  I have now been diagnosed with a dissociative disorder (which I will talk about next).  This is after nearly twenty years of being in the mental health system and having been diagnosed with all sorts of weird and wonderful things before.  And I know that I am not alone with misdiagnosis – People can come into a psychiatrist’s office with generalised anxiety disorder and go out with bipolar or come in with depression and go out with social phobia.  It takes a long time to achieve the correct diagnosis and without the correct diagnosis the illness is difficult to treat.  Research into achieving the correct diagnosis is one of three research priorities put forward by the charity https://www.mqmentalhealth.org. The second one is understanding the effectiveness of therapies for each condition – because there is little point in correct diagnosis if there is not effective treatment.  Finally in the knowledge that 75%of mental health conditions start before the age of 18 there needs to be more understanding of what makes children ‘at risk’.  The charity also state that at the moment mental health only receives 5.8% of the health research spend (in the UK). And although there are charities like MQ for every £1 spent by government on mental health research the general public donates 0.3p. The equivalent for cancer is £2.75.  Therefore, a sign of equality for mental and physical health would be that charities like MQ research became ones that the general public were aware of and gave to generously.

In other news

I went to my expert neuropsychiatrist and he said something like – ‘ I am diagnosing you with a dissociative disorder.  You are distant from the world.  Although you have epilepsy what you are experiencing are not epileptic seizures. You are having pseudo-epileptic seizures.  You are depressed.  You have had some trauma in your life that needs to be unearthed.  Take some anti-depressants, exercise, eat well, plan to do something exciting and come back in three months’ time when you have figured out what’s wrong with you.  I will put you on a waiting list to see a therapist in six to nine months’ time’.  As I said – I believe that the diagnosis is correct – I am dissociative.  It’s just I don’t believe the cause.  I believe that my illness is neurological and not psychological, as he suggested. So I am still on my search down the crumbling dirty track road, looking for my pot of gold.  However, as I have said, diagnosis is key, and now that I have been correctly diagnosed I have been recommended the name of an expert in dissociative disorders and I am trying to track him down.

 

14. 18th September 2016 – Self-Awareness

The purpose of psychotherapy, I am told, is to increase self-awareness – by becoming aware of who you are – you can begin to be proud of your strengths and work on your weaknesses.  And in becoming self-aware you become more accepting of yourself and thus are more self-assured and able to taken on the challenges that you face in life.

I never understood this process before but now I do – and I wanted to tell you that I have found that this process works.  It’s actually quite revolutionary and exciting!!!  Of course, you don’t have to go into psychotherapy to increase your self-awareness – I wise man I know once suggested that for a week I could keep track of those things which consistently crop up, which were difficult for me, and spot the pattern or common denominator in all of these situations. And in doing so I would find out what I needed to work on in life (Of course, I can’t keep a track of anything, so I didn’t do it!)

But by writing this blog I have dramatically increased my self-awareness. I have managed to articulate to myself (and others) that I have difficulty with processing information, with memory, with problem solving and with most cognitive functions.  But in doing so I have realised that none of this is my fault.  It is quite simply out of my control.  So if it takes me a long time to write a blog, to make dinner and I can’t quite ever understand what is going on in my diary, that’s OK. I don’t need to think I am stupid or be angry with myself.

Through this new understanding of myself I have come to learn the extent to which these difficulties are impacting on my life and thus have been very confident in my decision to seek medical help.  And for people with an undiagnosed neurological conditions the process of self-awareness should send them straight to a professional’s door-  a person who realises that they have an attention deficit (ie ADHD), periods of elation and also depression (ie bipolar), or that they have difficulty reading (ie dyslexia) and so on cannot work on their weaknesses by themselves – they need help (we all do from time to time). But of course, everyone can be healed through this process of self-awareness – if a person begins to realise that they are impatient or aggressive or judge too quickly – everyone has something – they can start to work on these negative character traits by trying each day to not be that way (and seek a professional’s help if the character trait is getting in the way of their life in an unacceptable way).

However because I have come to a new realisation about myself I can for the first time in my life be aware of my strengths.  For example I now know that can write and I like doing it.  I am persistent (according to an epilepsy Facebook group discussion this is a common characteristic of people with epilepsy) and I do care about other people. And in becoming aware of my strengths and understanding my weakness, I am more confident about myself, who I am and what I want out of life.

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In other news

I am very excited about my appointment with my specialist neuropsychiatrist next week.  Please g-d next week I will be able to give you some news – even if it is just a ray of light at the end of a very dark tunnel. ‘Fingers crossed’, as they say or to put it another way ‘I am appealing to The Infinite Power that Exists Out There to start to give me the answers that I have been looking for. I still am not seeing any benefits from my naturopathic medicine but on the other hand – it is still worth experimenting with it.  It doesn’t cause any harm, and for some people it really helps.

13. 11th September 2016 – Parenting theories

Over the break I have carried out some extensive research into parenting theories and have come up with my top three which I would like to share with you.  The aim of this process is to discover which theory would be most useful for me to use at the moment, whilst I am going through this difficult time (NB If you decide to plagiarise this blog for an academic essay in psychology or sociology you will almost certainly fail).

Theory one – children are resilient.  Many people are telling me this one at the moment, whilst secretly being grateful that their children have a relatively ‘normal’ life. However having observed the resiliency theory in real life with my own children – there does seem to be a lot of truth to this. Children have no previous experience to fall back on so they just get up and get on with it because it all seems normal.  My children have accepted that when mum sees a bruise on their leg, she might ask them where they got it from – even though she saw them fall over and attended to the incident last week.  It is normal for them.  They cope and they just get on with the various odd things that happen around them.  Still resilience theory doesn’t really resonate with me. It seems to suggest that it’s ok to make things bad for your children because they are resilient so it doesn’t really matter anyway.

Theory two – a classical psychological interpretation – This theory states that parents screw up their children and then the children spend the rest of their lives trying to undo the damage.  This theory was propagated by Freud, Jung, Piaget, Vygotsky and the like who believed that in these formative years a child’s cognitive and emotional development is established for the rest of their life. Oh dear, I think.  This is not good.  I thought children were supposed to be resilient and what I did didn’t really matter.  It looks like my children will spend years in therapy.

As a sub-theory to this theory is the one that says – if a mother is happy then a child is happy.  For my second pregnancy I was depressed almost throughout.  And if being depressed wasn’t bad enough the whole time I was thinking ‘My unborn child is picking up all my vibes and is going to be depressed their whole life.  How can I un-depress myself?   I am a crap mum before I have even started – what chance is there for my child?’ (I later miscarried, but that’s beside the point). And what about the one in ten mums who suffer from post-natal depression – surely all of their kids aren’t screwed up?  But there must be some truth in Freud et al’s theory – my children are not oblivious to my strange behaviour and my eldest can remember when I was chronically depressed.  There must be an impact – it must shape how they make sense of the world – but does it all have to be negative and does that impact have to last a lifetime.  What happens if some miracle happens and I get better – will my kids still be screwed up because there were some difficult years?

And then there is theory three – All a parent can do is try their best.  This is the theory I am going with for now.  I always thought it was a pretty odd theory – how do I know if I am trying my best? (Does an athlete only try their hardest when they score a personal best?).  However, I have come to understand that I am trying my best.  For me making a dinner for three kids is hard work (lots of decision making, planning, use of memory etc) – sometimes the kids have had the same meal more than once a week, often they don’t get veg and the kids only generally get a drink if they ask for one.  But I know 100% I am trying my best.  And if the kids end up in therapy in years to come, I will know that I tried my hardest for them and that life if complex and even though I tried my best it doesn’t always mean that my kids will have the future that I want for them – ie good mental health, a strong sense of self, to be a mensch (a good person who helps others) after all what else is important?

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Exciting News:  My poor suffering husband (and Boris Johnson) were right – if desperate write to your MP.  My MP Oliver Dowden wrote, on his House of Commons embossed-letter-headed paper to the specialist doctor that I want to see and told him I was feeling a bit desperate and the very busy doctor has now mysteriously found space is his diary for me in two weeks time (I would like a pad of Mr Dowden’s paper.).  The natrupathic medicine is not making a difference but this week I am going to add Lithium to see if that has an impact.

12. 21st August 2016 – On Tests

For the majority of people the tests that they do at school are the easiest they will ever experience.  Real tests are much harder – they are not something a person agrees to enter, there is no preparation and, seemingly, they are not something that they have a natural aptitude for.

There is an advert for a cancer charity on tv at the moment that says that ‘Cancer is the biggest test that anyone will probably every face’ – I’m not so sure.  Surely the test comes afterwards to the husband who has to raise his children by himself and try to explain to his children why the world is still beautiful.  And what about the test of a daughter of a high-achieving mother who has to find her own niche and come to feel proud of the person she is. Or 21 year old, whose father was an alcoholic and whose mother was not around much, who, aged 24, for the first time in his life gets a job (as a carpenter’s apprentice).  These are the real tests of life – everyone faces them – they don’t have to be dramatic or grand but they are true stories of tests of strength of character, courage and determination.

As I reflect on my life to-date I now see that I have had big challenges that I wasn’t even aware of as I was going through them.  I’ve had chronic depression, feeling suicidal all day long, feelings of worthlessness and I’ve had to really figure out, with the help of others, why it is that I feel that way.  But perhaps the biggest test is in-front of me – to find a resolution to my pain.

So I need to look for role models for those that have achieved great things to enable me to aim high and stay on track. With Rio 2016 coming to a close the Olympians are an obvious choice as role models who take seemingly impossible tests.  However, I wouldn’t choose my Olympian role models because they have won gold (although in contradiction to what I just said one of them did) but because of the challenges that they faced in getting towards the competition. My role models are Michael Phelps and the whole of the IOC Refugee team – a team as the name implies of athletes going through heartache and trauma[1] .  Michael Phelps, the American Olympic gold medallist swimmer, has ADHD, had trouble with inattention and couldn’t sit still in class.  His teacher once told him that he would ‘never be able to focus on anything’[2].  But he did – presumably with a lot of bumps along on the way – but he did it anyway. And everyone in the IOC Refugee team is a winner as far as I am concerned.  Each has their own story of trauma and heartache but yet each has somehow ‘miraculously’ survived to give others a sense of hope. They are role models because of their back story and although their achievement is amazing it is where they have come from which makes them inspirational.

But actually, for a true Test Taker role model I am looking for more than that – I am looking for the way in which they approached their test and for that my models are Abraham (together with Sarah), Ghandi and Mandela.

Even before the stopwatch was invented Abraham undertook ten tests. As an example – he was told by G-d to get up and leave his home and go to a place he had never heard of. Now this isn’t – at first they were asked to go, they thought about it for a bit, then they got used to the idea, and then they did a bit of research and thought about how they would earn a living and then decided that they would take the challenge.  This is one day being asked to leave everything you had ever known and (in a social media/ plane/ media  free world) get up and going because you were asked to.  Like all biblical characters, Abraham was by no means perfect, but upon his enormous tests he didn’t have a nervous breakdown in the middle and say that he was giving up and he was going to go back home and that he just couldn’t cope.  He had faith that things were happening for the best and he didn’t question it.

The only two other people I can think of who are like this are Nelson Mandela and Mahatma Gandhi.  They both had huge tests in their life (maybe not ten, but they were huge nevertheless) , they weren’t perfect, but they managed to achieve their goals with dignity, courage and grace (I would tell you more about their lives – I have read both of their autobiographies, but I can’t remember a thing).

I know that in this horrible test that I am facing I am not approaching it in even a tenth of a fingertips of Avraham’s, Mandela’s or Ghandi’s way.  Or even those Phelps and the refugee IOC team. I may go on about gratitude and miracles but I wobble, fall down, get up, whinge and then fall down again day after day.  But people like Avraham, Sarah, Mandela and Ghandi will always be the people that I, and many others, shall look up to because in their tests of life they persevered and came through stronger and wiser.

In other news: You guessed it – the reason I am withering on again about nothing is because there isn’t much news (isn’t life so often ‘nothing happening, nothing happening, something, nothing happening, nothing happening etc). After the ‘It’s not what who know but who you know’ approach failed because this doctor did not want to see me, I tried the Boris Johnson (our very quirky and quite funny Foreign Minister) approach in the hope that I could see my October doctor sooner.  Boris Johnson said, ‘The dreadful truth is that when people come to see their MP they have run out of better ideas’ so I wrote to my MP and asked him if I could see my October doctor earlier and he said something like  ‘I will do what I can do but this decision is out of my jurisdiction’.  I have however finally got the naturopath’s medication.  It tastes like nail varnish!! But I don’t know about how it impacts upon me as yet.  I’ll just have to try it out and see what happens. Also, just to let you know that I’m not going to be writing for the next two weeks.  Unfortunately my mind travels with me when I travel, but other than that I’m sure I will have a good time.  Hope you have a good break whilst I am away xx

[1] https://www.olympic.org/news/refugee-olympic-team

[2] https://www.understood.org/en/learning-attention-issues/personal-stories/famous-people/celebrity-spotlight-how-michael-phelps-adhd-helped-him-make-olympic-history

9. 31st July – Benefits assessment

A middle class woman goes to have an assessment for benefits because she has an invisible illness condition. I guess this happens every day – but it is rarely talked about it.

For those of you that don’t know, if you are ill and can’t work you are entitled to Employment and Support Allowance (ESA),  if you are not receiving statutory sick pay the state won’t just take your GP’s word for it and ask you to attend a ‘full medical assessment’[1].

So after an hour and a half wait (they call it ‘overbooking’ – I call it ‘over-overbooking’) I entered the assessment room and was greeted by a doctor – the assessor. The most important thing in the room was the computer. I felt sorry for the doctor and he felt sorry for me. He felt sorry for me because he could tell I was genuine and that I would rather be working than claiming benefits. I felt sorry for him because his job seemed extraordinarily demeaning. Previously, I learnt, my assessor had been an orthopaedic surgeon, but his eyes started to fail him and so he lost his confidence and changed jobs.  As far as I could see, his job involved reading medical notes, asking a list of questions from a computer and doing some very basic health tests (eg ‘Please can you read the letters on the board’, ‘I want to assess your cognitive function – what is 90 takeaway 7?’).  He also wrote a report. However, I felt the most demeaning part of his job was the fact that, at the end of the interview the surgeon, who presumably had a make a few decisions in his previous career, was not deemed suitably qualified to make a decision on whether I was fit to work and therefore could claim ESA.  That decision would go to a bureaucrat called a Decision Maker. As you know I can’t think straight, so the following day I asked myself silly questions like ‘Why can’t a doctor-assessor ask his own originally crafted questions and then make a Decision on whether the ‘customer’ is able to work? ‘Why eas an ex-orthopaedic surgeon asked to asses somone with epilepsy/ mental health problems? Surely there should be ‘mental health assessors’ and ‘specialist orthopaedic symptoms assessors’ and so forth who can specialise in assessing particular health conditions?’. Was a this very nice doctor the best person to assess me? I am obviously too stupid to answer these questions and so I must accept the rather peculiar reality of the cognitively adept world.

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Yesterday I saw a man, dressed in a pink skirt, so short and childlike that it was probably meant for an eight year old and a top that, me being me, I cannot remember the colour of – walking down the high street.  And I felt a huge connection to him – I thought to myself – ‘Isn’t it great, that in this modern age we can so freely express ourselves.’  Even ten years ago that man would probably not have felt comfortable enough to walk down the road such as he was – transsexuals were simply hidden from view and rarely spoken about.  But in our open society it is possible, and in some areas – even acceptable, to dress openly in this way without being lynched.  And today I can express myself through a blog, telling family and friends how if feel because they could not see it if they just looked at me.  Ten years ago only newbies to the tec world would have written a blog and it was certainly not acceptable to write so freely and openly about mental health issues.  So I am grateful that the modern age allows me, and this man that I do not know, to be able to express ourselves in the way that we want to.

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In other news – I am still waiting upon my neuropsychiatrist getting a second opinion.  He is going to be away for much of August, so it is a waiting game.  I have found research that says that epileptiform activity (which is what I have) can have a large impact on cognitive function even if the patient does not have seizures.

The result of my hair test has come in!!!! I had a phone call with the naturopath who explained to me what my hair test said. I can’t remember the details –there was something about a lack of cobalt and lithium (and yes I did try to write down what she said  – but I have lost the notepad and, in any case, the notes don’t make much sense).  She has got to check that there are no interactions with my antiepileptic medication and will get back to me with a detailed email explaining what minerals and supplements I need to take.

Next week I attend a Personal Independence Payment Assessment (the old Disability Living Allowance) interview – lucky me!!!!

[1] See https://www.gov.uk/employment-support-allowance/eligibility for more information

7. 18th July 2016 -Mothering whilst ill

I am not the mother I want to be, but I know that I am not alone in thinking this.

As an example of my unmotherliness, I will explain to you what happens when my children come home from school. My eight year old says, ‘I want to watch tv – where is the remote control?’  Me: Spend 20 minutes trying to find it – I feel guilty because I probably lost it. Think to self, ‘I need to make dinner.  What shall I make?  Don’t know’.  ‘What would you like for dinner?’ I ask my five year old, ‘Pasta with tuna,’ he says.  Think to self, ‘Good plan – we have plenty of time to make that.  I will go and put washing on first because I haven’t done that today.’  Go upstairs to get washing. Think to self, ‘What am I doing upstairs?’ Not sure.  See three year old taking all the wipes out of the packet. ‘Why are you making a mess? Let’s go downstairs’. Take daughter downstairs and when at the bottom think to self, ‘I forgot the washing. I will go and get it.’ Go upstairs to get washing.  Me to self, ‘Must make dinner.’  My son says, ‘I am hungry!!’  Me: Feeling guilty that I still haven’t started making dinner,  ‘Have a yoghurt’, I say (only latterly so I realise that this will mean that he will not be hungry for dinner).  Put pasta on – Not sure how much to put in saucepan so use half the packet. Put washing in the machine. Fifteen minutes later pasta is overcooked and I call children in. Elder daughter starts to put mayonnaise in tuna because she likes it with a very specific amount of mayonnaise which I don’t understand. ‘Need to clear breakfast counter,’ I think – children cannot eat from it with that much mess. My son says, ‘I will get the glasses,’ (this is his favourite job). Me to self, ‘What do I need to do now? Oh yes get – Knives AND forks and serve youngest two good on plates which will fit their meal.’ And so it goes on.

So for all of you whose meal times don’t look like this – Kol akovod (well done) – I am in awe of you (and before you suggest it – writing a list of the 25 things that need  to be done when the kids get back from school does not help).  You have the gift of memory, processing and strategic thinking.  It turns out, I realise now, that strategic thinking is not just something that management consultants do.  Almost everyone does strategic thinking as a result of processing the information around them. It helps them to be organised and make on-the-spot decisions about inconsequential things.  If you can’t strategically think and your IQ is at reasonable level – life sucks.

So I am not the mother I want to be – I want to be present with my children, to feel that in–the-moment connection, I want to be a strategic thinker who understands what is best for my children and am able to prioritise their individual needs. I want to be the solid rock that they can count on to help them along their way. But right now I can’t be that person. Neurologically it is not possible.

However, as I said, I am sure I am not alone in not being the mother I want to be.  There are probably millions of other mothers who are in my position but they just don’t announce it on Facebook! (a very silly thing to do!!!).  So for all those who are going through a tough time – whether you are, bipolar, an alcoholic, having an acrimonious divorce or have cancer –  but-really do want to be a good mother (or father), here is a list of the benefits your children can get from your imperfect situation.  Your children:

  1. Have a much better sense that life can sometimes be hard and is not always the way they want it to be.
  2. Might have to fend for themselves a little bit more than other kids. If they really want something they have to go get it themselves otherwise it might not happen.
  3. They learn sometimes they don’t get what they ask for and that is OK

And in my case, which might not, unfortunately, apply to everyone, they also:

  1. Realise that if you are open about your problems other people often show kindness

Obviously if you are going through a difficult and trying time and think this list is a load of crap then I totally get it. But if you liked the list, I’m glad it helped you.

NB I made two factual errors in last week’s blog which I would like to correct.

  1. Firstly I said that 300 people had looked at my blog. However, due to me being confused 100% of the time I got the number wrong. Nevertheless, the data implies that most of the people I know are aware of my problems.   That’s the way it should be because if I had a physical problems most of my friends would know about it.
  2. Sadly, FedEx are not taking my hair sample to Germany – it was too expensive. The idea of a man coming to pick up my hair in a white envelope and taking it all the way to Germany to be analysed for deficiencies in mineral and vitamins sounded very romantic but it was not to be. However, through Royal Mail tracking services, I can now inform you that my hair sample took the late night flight from Heathrow and is now somewhere in Germany awaiting to be taken to Hersbruck.

 

6. 11th July 2016 – The conclusion is not what I wanted

And so the plot has a slight twist.  The neurologist came round on Friday morning and said to me (more or less), ‘I looked at the computer to see what was in your head and the computer said ‘no’.  It said ‘No we don’t know what causes your problems – it’s not epilepsy.  So you are going to have to sort it out yourself.’ .’I said, ‘What?’ and she said, ‘Well it’s like this I’m a neurologist. I deal with epilepsy and I the data that we have taken from you this week says that although you are having some epileptic activity it’s not enough to make you feel the way you say you are feeling.  So really it’s not my business anymore.  Go back to your GP and see if she can refer to you to someone else.’  As in all cases like this it wasn’t the computer that I was angry with, it was the person operating it.

And so people have told me –  the result is good – ‘At least you have ruled something out – your epilepsy isn’t the cause of your problems’.  ‘Ok’, I think to myself.  ‘But I have a lot of problems.  I really wanted to rule something in’.  ‘Well then at least you don’t have to have brain surgery,’ they say. But the person with epilepsy knows that medication only helps 70% of people with the condition.  The other 30% are a bit desperate and would try anything, including brain surgery, if they thought it would help them.

Others say – there is Hope.  And honestly, I really do believe in G-d.  I don’t believe there is another way to explain everything.  But really when the going gets tough it is hard to believe.  I want to believe, but it’s hard.

The third thing that people say is ‘Look for the positives’.  This I usually think is a pile of crap because how can you look for something positive if you don’t know what you are looking for.   But in this instance I have found two positives.  Firstly, I met some really good people in Chalfonts.  I have found, over the years, that people who are going through a really tough time are some of the most real and beautiful people I have ever met. And when you are going through a tough time it helps to be near like-minded souls.  It doesn’t need to be a structured therapy session – just having a chat with someone that knows is just really good. And it was good to speak to these people (when I wasn’t stuck in a room) and understand their journeys and to share their pain.

Secondly I have found writing.  I like writing.  I have also had good feedback.  And according to the stats 300 people have read my blogs. I don’t know quite how, or if this is even accurate, but that’s what the stats say. Anyway, writing is therapeutic for me. That’s why there is a new type of mental health recovery programme which implies that if you start up a new hobby you’ll feel better.  If you were raped as a child, you are not going to find art and all of a sudden feel great again.  But I guess what they mean is the art helps ease the pain and improves self-esteem whilst time (or medication or therapy) heals the mind.

So tomorrow, like some weird detective story, I am going to cut a piece of my hair and put it in a white envelope and then a Fedex guy will come and take it to Germany.  This piece of hair is going to get analysed by a German or an Israeli doctor and hopefully they will give me a plan going forward.  It’s an ‘alternative way’ recommended by a friend. But it makes sense because apparently there is more information in your hair about the way you are operating than there is in your blood.

But I am also going to get a second opinion – One of the more helpful doctors from Chalfonts is also going to speak to my doctor in London to see if they can come up with anything new. The last option I have been offered is Cognitive Remediation therapy.  I don’t like the last option. This is a therapy that they give to people with brain damage to see if they can find strategies to work around their problems.

I will let you know what happens.

 

4. 6th July 2016 – Sharon’s Mental Health Manifesto Part 1

The NHS always talks about patient participation.  I don’t think that someone who is on the verge of ending their life would be asked to rate on a scale of one to ten if they feel listened to by their social worker –   but the intention is clear – those receiving the mental health services should be involved in designing and assessing the care that they receive.  My mother-in-law, Karen Ross, MBE, told me that she always thought that to be ill you need to be well. And she is right.  I have a lot of experience of being within the mental health system but when I was ill (in that way) I just didn’t have the strength to try and understand the health system, to chase medical appointments and also to get angry – but articulate – when the system wasn’t working for me.  But now I am not feeling so depressed (just cognitively inept) and in the spirit of patient participation, I present to you my own mental health manifesto, part one – the cheap one (part two tomorrow is expensive).

When a patient first visits a GP saying they are depressed they should be given two information sheets – one would have a simple organisational flow chart to explain how the mental health system works in their area and another would detail non-NHS resources that they could turn to, in case, as is 100% likely, their referral doesn’t come through as quickly as they would like.

  1. Organisational flow chart –

After three years in the Hertfordshire Partnership University NHS Foundation (ie the Mental Health Trust) system I am now going to try and explain to you the steps a patient has to take on their mental health journey (although some management consultant is probably plotting to change the system as we speak).  Firstly you have trot off to your GP you say ‘I am depressed’ and if the doc thinks you need more than a tablet s/he will refer you to the As One services.  You can also decide to just skip that bit and phone up As One yourselves. As One then make an appointment with you for a short triage session at their specialist centre (ie a call centre). For those of you that don’t know, there are a hell of a lot of depressed people out there today, and even feeling suicidal is not enough to get you mental health care quickly.  You need to feel that you are going to do the deed in the next ten minutes if you want immediate help.  If you only have the S thought once a week the call centre (maned, it has to be said, by trained therapists and the like) put to the back of the queue.  The call centre then assigns you to one of two services – what I call the Critical or Standard service.  If you are assigned to the Critical Service, about six weeks after going to the GP telling him/ her that you desperately wanting to kill yourself you can finally see a psychiatrist.  You tell them your woes and s/he gives you a tablet and also gives you a nice label eg bipolar, borderline personality disorder, generalised anxiety disorder etc. Sometime after that you might get an appointment to see a clinical psychologist who tells you what type of therapy s/her thinks is best for you (but she won’t be able to tell you what the waiting time to see a therapist is like). And eventually after all these shenanigans you are put on a list to see a therapist.  In between all of this you might also be given a social worker to perk you up every now and then.  So are you with me?  That’s six people (and it could be more) that you have to tell your life story to if you are feeling shit.  I think, it’s much better to be a patient in the Standard group because then you have to wait a bit longer to see a psychiatrist but you are just assigned a Cognitive Behavioural Therapist and you can relax a bit and feel less confused.  Don’t get me wrong, most of people that work in the Service are extremely helpful, caring and work very hard in a particular stressful situation.  But I am sure you will agree with me that an organisational flow chart of how the system works would be useful for each patient, preferably with target wait times for each appointment.

NB – If you think that no-one should have to explain their inner soul to seven different people when you are depressed, then I agree with you.  This will take a lot of extra funding and I will discuss this tomorrow.

  1. The second sheet of paper would have a list of four different types of non- NHS resources that are available to so that patients can be signposted to what can literally be life-saving resources if, as is inevitable their referral takes longer than is expected.
  2. i) Specialist mental health charities

We are blessed in this country to have many mental health charities that can provide excellent support  eg Mind (there’s one in Leeming Road, Borehamwood), the Jewish Association of Mental Illness (JAMI) and many others.  GPs should be fully informed about these services and signpost patients to them if it’s appropriate.

  1. ii) Online support groups.

The NHS has an excellent support portal for people suffering with mental health issues – called the BigWhiteWall – but GPs need to be aware of it and advocate for its ability to show patients that they are not alone and that other going through similar troubles can help them. Facebook also has an array of specialist support groups.

iii) Mindfulness resources.

If you read the literature on mindfulness it says that, if practiced regularly, mindfulness can help you find true inner peace and joy. It might not achieve all of your expectations but it can help.  There are lots of mindfulness apps on the internet (free or paid for) as well as face to face groups – and patients should be given details of them when they first go to their GP (Personally I think that the NHS should have its own free mindfulness app for patients but that’s a different story).

  1. iv) Paid for services

It isn’t really controversial to admit that some people pay for services when they know that the NHS isn’t meeting their expectations. And therefore I think that on this piece of paper should be a list of paid-for mental health services eg registered private therapists listed on the British Association for Counselling and Psychotherapy or the UK Council for Psychotherapists search facility.

So that is the first part of my mental health manifesto. When a patient comes to see a GP – give them two pieces of paper (or to cut costs one double sided-piece of paper).  Tomorrow – part two.