25. 23rd April 2017 – You are what you eat

The Jewish calendar is currently between two festivals – Purim and Passover – which are based on two captivating stories – the story of Esther and the story of Moses.  The stories have some strikingly similarities.  However, they also differ in one key respect.

The Passover story is set in Egypt and the Purim story in Persia. These were both countries that the Jews lived, but could not be openly Jewish. And then a protagonist comes forward – in the Purim story, Mordechai – and in the Passover  story – Moses – they are both leaders, wise beyond their years and are prepared to take risks for what they believe in -Mordechai refused to bow to Haman, the Prime Minister, and Moses killed an Egyptian because of the way he was treating an Israelite. Finally both protagonists are humble enough to realise that they cannot achieve their goal by themselves – Mordechai asks Esther, who was either his niece or wife (depending on how you interpret the story),to try and influence the king because he knew he could do that himself and Moses asks Aaron, his elder brother, to be his spokesman because he knows he has weak oratory skills.  And finally both the Purim and Passover story have the most captivating and mesmerising plots – hope lost, murder and the fall from power.  Indeed, if you don’t know the story of Esther or Moses I implore you to read them – if I hadn’t have heard the stories thousands of times before, I would be entranced.

However, that is where the similarities between the two tales end.  Because they have one fundamental difference – in the Passover story the route for the Jewish people to follow is clearly signposted.  G-d through Her supernatural miracles – the plagues and the splitting of the sea – clearly indicates that the Jewish people’s path is to follow Moses out of Egypt (not that all the Jews were keen about this idea, but that is another story).  But in the story of Purim is not one of mind-blowing, wondrous, miracles that clearly show the direction of the plot. Instead, the characters are presented with a series of challenges and at each and every step take decisions that they hope will lead them the right way, but they don’t know for sure.

And so it is with my own life.  I am muddling through.  Sometimes my life seems to make sense but most of the time it doesn’t and I face an uphill battle, I struggle on.  About a year ago, I was randomly searching the internet when I came upon a piece on Wikipedia about Attention Deficit Hyperactivity Disorder (ADHD) and all of a sudden all the puzzle pieces seemed to fit – I was convinced that I had ADHD and finding this article was some sort of miracle.  And so I went to a doctor and she said that although I have executive function problems (because for those of you that don’t know ADHD is a disorder of the executive function) it was my epilepsy that was causing my difficulties. But I was not convinced.  So I got another opinion.  Same thing.  The doctor said – your disorder is about your epilepsy and not ADHD.  And then I went to my neurologist, and I described my symptoms and she prescribed me an extensive stay in hospital for some more tests.  This must be a miracle, I thought.  At the hospital I will find my answers.  And at each stage I thought ‘I know why my story is taking me this way.  It’s all making sense now I understand why my puzzle pieces of life have turned out like this’.  And in some sort of arrogance as my story began to unfold, before I went into the next doctor’s appointment I started to believe that I understood G-d’s mind.  That is until I got a slap in the face and the doctor didn’t provide the answers.  And then once again I am left slowly trying to feel my way in the dark searching for a miracle.

I look to Esther and Mordechai’s story and I see that G-d is there but She’s hidden, unlike is the Passover of story but I am reassured that their story does turn out well in the end (Haman is found out to be the baddy and lots of non-Jews die in battle). But I realise that I have to do, what Esther and Mordechai did, and just what most of us do, when our plot makes twists and turns, – I have to do what is right at the time until, for that moment in time at least, the puzzle pieces of my life finally look like they makes sense.

In other news: No other news.  I am awaiting my medication change and my referral to the neuro rehabilitation unit.  Both things should happen quickly but for whatever reason they are taken time. I really am still looking for a miracle to happen and a magic pill to finally piece together the puzzle of my life.  But my search is now looking a bit desperate and although I pray I am starting to give up on whether it will ever happen.

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.

 

 

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