18. 30th October 2016 Happiness vs Joy and a summary of the events so far

Last week the Jewish people celebrated Simchat Torah – the joy of the Torah.  However, I would argue that this is not a joyous festival, rather a festival which, in a very contrived way, tries to make the Jewish people happy.

The idea of the festival is a good one – Jews have had enough of synagogue at this time of year so why not end the holiday season with a party to celebrate how the Torah, the bible, enriches our life.  However, the execution of the festival is poor – the men walk around in a circle for at least an hour; the women look at them from afar and pretend to dance and the children get excited by eating sweets.  Obviously I am referring to an orthodox setting here, but, I don’t think that the customs of Simchat Torah aim to provoke a real sense of joy in any Jewish denomination.  The festival might make certain people happy but I don’t think it makes them joyful.

Jewish scholars and self-help books alike say that happiness is something temporary.  Many people are happy at their birthday party, watching a film and some strange odd balls even are happy at Simchat Torah. However, the same scholars and help-self books argue, that the real joys of life can only be found be in connecting to your partner, to yourself and for Jews at least, to the Torah. And that joy isn’t temporary and certainly doesn’t come because you are at a party – it is, I am told, much more real and long-lasting, and indeed how most people want to live their life.  Thus although I said in my last blog that some people call a succah, the temporary structure that we sit in for the festival of succot, a ‘happiness box’, perhaps that is the wrong phrase – perhaps ‘A joyous box’, is more apt – a succah can, I think, bring a real profound sense of joy, in the knowledge that you can get by quite happily with not that much.  I pray that I, and the millions of others who are in pain for whatever reason, will find that real sense of joy, very soon.

 

In other news

Just to recap the story so far in case you have lost the plot or have missed an episode or two.

The background to the story was that I have suffered quite severely from depression for over twenty years including three voluntary admissions into a psychiatric hospital.  Through an extremely convoluted process I became self-aware of cognitive symptoms which were severely impacting on my quality of life and were probably the cause of my depression.  My cognitive deficit included problems with memory, processing, problem solving, attention and decision-making and other capabilities that most people take for granted. And although I haven’t mentioned it previously in this blog – because it hasn’t seemed as important as my cognitive symptoms – I was also drowsy a lot and, since coming off my antidepressants medications,  had a huge range on involuntary movements (eg involuntary walking, making claw shapes with my hand, involuntary bowing etc).  At first I thought that my cognitive symptoms could be due to absences – 1-2 second seizures that are easy to miss – even by the person who has them. But later I came to realise that they were due to epileptiform activity – the background epileptic discharges which were happening in my brain.

I told my neurologist about my symptoms and she prescribed me to a week in an epilepsy hospital for a videotelemetry assessment.  This involved being in a room 24×7 where I was videoed and a recording was taken of my brain activity (an EEG).  Being a little bit bored in this environment I started this blog ‘Epilepsy and me’.  In my simplistic little mind I believed that by the end of the week a solution to my problems would be found.  But I was severely mistaken.  At this point I didn’t understand that my condition was rare and that epilepsy can be an extremely difficult illness to treat.

At the end of the week the neurologist said to me that there was nothing she could do for me as there were no recorded episodes of seizures on my EEG – even though I had epileptiform activity.  She told me to go home and see my GP.  Hope faded.

However, I knew that I couldn’t live like this, and for the sake of my children, I must be a more together and less depressed person and a solution to my problems must be found.  So I tried the alternative route and sent a clump of my hair off to Germany to be analysed for lack of minerals.  I took all the potions that my naturopath suggested but the brain fog continued.  And so the saga went on.

Then a doctor, who I highly respected, recommended me to Super-Busy-Very-Important-Doctor.  The NHS waiting list to see him was six months long but, not to be put off, I wrote to my MP and explained my situation and sure enough all of a sudden Super-Busy-Very-Important-Doctor could see me a lot sooner than he initially said.  At my appointment a trainee doctor listened very carefully to my story and then relayed it to Super-Busy-Very-Important –Doctor who said something like, ‘Sharon, you are not having seizures – you have having pseudo -seizures/ non-epileptic seizures.  You have a dissociative disorder.   You see Sharon – there are two parts to the brain – the neurological part and the psychological part. You have epilepsy – that is neurological.  But you also have non-epilepsy (indeed 10% of people with non-epilepsy have epilepsy as well).  Non-epilepsy is psychological. Go home and think about what the psychological cause of your disorder could be eg Were you abused as a child?, Have you witnessed mass murder? etc , Take some anti-depressants and come back when you have discovered the work you must do in therapy – the therapy will start in 6-9 months’ time.

Although, the term dissociative disorder resonated with me because I did feel separate from the world, I wasn’t so sure about his plan so I sought out another doctor for a second opinion.  In the meantime the Department of Work and Pensions, after carrying their extensive but very peculiar assessment  of me,  got back and said – we agree with you Sharon – you are too ill to work and, in addition, your disability is so chronic that we believe that the government should give you additional income so that you can manage your lifestyle.  I was pleased for the income but depressed that my life had got into such a hopeless state.

And then this week I went to see Doctor Eventually for a second (or was it third or fourth?) opinion.  He said something like ‘I agree with Super-Busy-Very-Important-Doctor – you have a dissociative disorder. However you are still having epileptic discharges. So try taking these tablets (sodium valproate –an anti -epileptic) – I can’t promise, but they might help.  It’s worth a go.’

So in conclusion no doctor really knows what is going on in my head but perhaps sodium valproate will give me a sense of the inner joy that I crave.

 

 

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

5. 7th July 2016 Mental Health Manifesto – part 2

Yesterday I presented the quick cheap ways to make the mental health service better.  Today I present two, more expensive ones.

 

  1. Simplify the mental health system
  2. Train psychiatrists, therapists, social workers and other people involved in mental health services to recognise undiagnosed neurological conditions.

 

  1. Simplify the mental health system

As I explained yesterday under the current system in the NHS in Hertfordshire, and I suspect elsewhere,  a patient with a chronic mental health problem has to see many (in Hertfordshire it can be up to six) mental health professionals before receiving therapy – and patients have to explain their personal story, who they, perhaps, have not explained to anyone else, to each new person.  If you are a happy person this would make your weary.  If you’re a depressed person just dealing with the system could literally send you over the edge.  However, the private system in the UK doesn’t work that and I think the NHS should copy the private system. In my experience if you want to go private this is what happens: – You go to your GP and you tell them that you are depressed.  If s/he thinks that you need more specialist help she will write a referral letter.  You phone up your insurance company and if you have funding in a week’s time you can be sitting in a psychiatrist’s office (obviously if you haven’t got funding your stuffed, but that’s a different matter).  The psychiatrist is the first, and perhaps only, person that will take a detailed account of your history and s/he decides the best course of action to take eg Do you have a particular diagnosis that needs medication eg schizophrenia, bipolar, an anxiety disorder, Do you need therapy?, What sort of therapy?, Is there a therapist who would be a good ‘fit’ to your particular personality and that convenient for you to get to?  How much therapy is required?  Is the situation desperate – should this person go to hospital? If say the psychiatrist prescribed you ten therapy sessions s\he might see you after that period to assess whether you need more therapy/ medication.  It’s just simple – you see one GP, one psychiatrist and one therapist and ideally you should see the same people on an ongoing basis. Of course, it doesn’t mean that people do not suffer, or die.  Conditions are hard to treat, and wrong diagnoses are made (see point two below). But it does mean that the system is easier to understand and there is less chance of people falling through the gaps.

  1. Train mental health professionals to recognise undiagnosed neurological conditions

 

Everyone knows the a story of the boy, who is not doing that well at school, whose behaviour goes off the rails, who has a single mother with a full-time job and two other kids from other relationships.  Although the mother loves her son very much, she has a below average literacy level, and she never does homework with him.  In manhood, this boy can go one of two ways – either to prison or on the bright side – have low paid jobs and on and off anti-depressants for the rest of his life (there is of course a the third possibility – that he find a passion like music, which dramatically increases his self-esteem, and although difficult, he works hard to improve his literacy and ends up having a career in music, a loving family and very much enjoys life).  In either of the first two examples the man goes to see a therapist and at the back of her mind the therapist is asking herself, ‘Why is this man depressed?  What made him this way?  I can see that he had a difficult childhood but I think I am missing something’. The man, of course, has undiagnosed dyslexia. The reason that the therapist is asking herself this question is because she has absolutely no training in recognising dyslexia or for that matter any other neurological condition like ADHD, autistic spectrum disorder (ASD), dyspraxia, and indeed epilepsy.  She is trained primarily to listen and to understand personality traits and how people behave in relationships. And as a mental health professional she is not alone in not being able to recognise these conditions – many psychiatrists, in my experience, are not able to recognise them or think that these conditions occur only in children.  Therefore, although the therapist might be able to treat emotional issues that her patient might have, from other experiences in life, she will never be able to address the underlying cause of her low self-esteem because dyslexia isn’t something she is trained to treat.

Rabbi Tatz argued, (get reference) that depression is caused by a lack of achieving your potential.  That is why I believe I got depressed – I knew I was different from other people – but I didn’t know how and I couldn’t explain it to anyone because I didn’t his is why I believe I got depressed. And I am not alone – people with ADHD, ASD, epilepsy etc are just much more likely to get depressed[1] than other people. But if as I did, they go to a therapist, to treat this illness, they are unable to because it hasn’t been diagnosed and they don’t have the skills required to recognise it – let alone treat it (of course the patient could have of issues that a therapist could help with but there will always be a part of the patient that goes untreated),

Thus I believe that all mental health professionals, including therapists, psychiatrists, social workers and even GPs should be trained to spot these neurological conditions so they can refer patients who they suspect have one onto the appropriate professional and receive the appropriate care.

So that’s it Sharon’s mental health manifesto – part two. It’s expensive – but could be cheap in the long run.

PS Sorry if this blog sounds a bit antsy, but for those of you that don’t know I have been stuck in a big brother room for four days with 27 electrodes on my head being videoed monitored so the docs can see if I am having seizures.  Tomorrow I get out – freedom!

[1] https://www.epilepsy.org.uk/info/depression   https://adaa.org/understanding-anxiety/related-illnesses/other-related-conditions/adult-adhd#   http://www.autism.org.uk/about/health/mental-health.aspx