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!!!

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