7th September 2018 43. Being Busy – part 2

I have been busy of late.  I now have a job coach (through HertsMindNetwork) for people with disabilities.  He’s helping me reinvent myself as a freelance writer and together we have created a separate website with a portfolio of all my writing work  – sharonrosswrites.com.  He’s also funded me to go on some courses.  One of them was called ‘Writing for pleasure and profit’ – the tutor was amazing and said that to get an article published all you have to do was pitch your idea to an editor in a couple of sentences and then say a couple of sentences about yourself.  I had, for some time been thinking about writing an article about a Jewish approach to mental health but the course really gave me the impetus and confidence to share my ideas.  I wrote an email to the Jewish Chronicle pitching my idea and hey presto a few weeks later ‘How Judaism could do more to acknowledge mental health’ was published. I’ve also gone on a course about how to get a book published through an agent (ie not self-publishing) in the hope that one day I can publish this blog.  The conclusion of the course – writing a book is one task but getting a book published is a quite separate activity that takes a lot of hard work and even if you do get published you probably won’t be able to earn a living from it.

I’ve also found someone who is trying to help me organise myself and my family.  To be honest, it seems like a lost cause.  I now have a laminated meal planner on my kitchen cupboard with pictures of all the meals that we are supposed to eat on each day of the week – but I never ‘see’ the planner.  I know theoretically it is there, but I just am not aware of it when I’m standing in the kitchen trying to work out what we should have for dinner. Nevertheless, the two of us are persevering, in the hope that we find one strategy that will make a difference.

It’s also been the summer holidays and I’ve had three growing children to occupy.  We’ve got through it and that is some sort of achievement. Still with all this and making bespoke meals for myself every day on the ketogenic diet (I celebrate my one year on the diet in a couple of weeks!), and with the up and coming Jewish festival season, I don’t feel busy.  After analyzing what other people say they think about when they feel busy I have concluded that feeling busy involves proactively thinking ahead at the tasks that you need to do to achieve your goals; problem solving when difficulties arise; breaking down large tasks into smaller ones and also getting anxious as to whether you can meet your targets.  But I live I live in a fog. I don’t think these things – I just do exactly what I need to do when I need to do it and I get stuff done.  Although, some people crave for a world with little anxiety, in practice it’s no fun at all. However, despite my internal lack of busy thoughts I do realise that slowly, slowly I am making progress.  My life is somehow moving on.

On the medical front things are also moving forward – although not in the direction that I expected.  I tried the CBD oil for three months (in the end not from the naturopath but from a well-known brand that has a reputation for treating epilepsy). I had not noticed any differences in my cognitive function but I was still hopeful.  ‘What if,’ I thought to myself ‘the CBD oil was changing the electrical activity in my brain but because I am taking the anti-epileptic drugs, which in some way disinhibit my brain functioning, I don’t notice any improvement the oil was making.’  So, I had an EEG and the results – no change in my epileptiform activity after being on the CBD oil.  No change at all.

I spoke to my neurologist after reading the EEG report.  ‘Is there anything else you could do for me?’ I asked.  ‘No’, she replied honestly.  ‘What about medical marijuana?’ I asked.  ‘As you know the UK government has now set up a special panel, where on a case-by-case basis they will consider giving a licence to prescribe this drug.  Do you think that this panel would consider that I have a good case for a licence?’  ‘It is unlikely,’ she said.  ‘There is evidence that medical marijuana can treat ethe epilepsies Lennox-Gastaut syndrome and Dravet syndrome[1] but there is not enough evidence to say it will treat your type of epilepsy.  I think it is unlikely that they will grant you a licence.  However, if you would like I can refer you to the professor at the hospital who specialises in medical marijuana to get a second opinion.’  ‘Ok,’ I said. But I realised that she was probably right in what she was saying.  The panel would probably not grant me a licence – there just isn’t enough evidence that it would work for me at the moment (see endourpain.org for details of the process of granting licenses).

But as you might have realised, I’m not one to give up easily.  My motto has been – if something doesn’t work – try something else.  But I am slowly getting to the very bottom of the list of available alternative treatments.  Nevertheless, it’s still worth continuing to see if I can find a solution to my problems.  So – my next treatment is neurofeedback.  I found out about it on a website about alternative treatments for epilepsy. There is some research evidence to say that it works but the reason why this modern gal knows that I am really hitting the bottom treatments available is because there are very few Facebook groups about neurofeedback, and the ones that are there are not very active.

As I understand it in a neurofeedback session the clinician firstly takes an advanced type of EEG to understand the brain’s electrical activity.  The patient is then set ‘training targets’  – ie areas of my brain that could do with improvement. The treatment will involve watching a computer game or continuous movie stream and, just like Pavlov’s dog, when my brain’s activity is meeting those targets, the patient will start winning the game or will watch the movie continuously.  When the brain activity drifts from these targets the patient will lose the game or the movie will be disrupted.  Over many sessions (which can be 2-3 per week), the theory is, the brain will begin to regulate itself (The centre I am going to also offers biofeedback and non-invasive brain stimulation and I will let you know more about these if I am given these treatments). Does all this sound a bit whacky?  No more whacky than putting a chemical pill in your mouth or getting a stranger to open up your brain and fiddle around with its insides.  No-one really knows how the brain works – and sometimes you just have to do things a little ‘outside the box’ to get the desired result.

So just after the Jewish New Year, I will start a new journey, of I hope (and pray) renewal.  It will keep me busy.  I will let you know what happens.

Happy new year and well over the fast to all those who celebrate.

[1] https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy

28. 7th June 2017 – On Dementia

 

I could say that last week was a busy one for me – I attended a batmitzvah of some very special friends of hours, the following day was a wedding of a relative and then it was half term. In half term there was the two day festival of Shavuot (in Israel and for reform Jews it’s one day, but that’s another matter). For various reasons to do with Jewish law I prefer to cook the vast majority of food before the festival began and we also had guests over this period and together before the festival began I calculated that, together with my husband we cooked 30 meals. To top it off it was my six year old’s birthday party on the Sunday of the half term with all that that entails (ie softplay followed by lunch). But I didn’t feel busy. I didn’t feel busy at all. And I have come to realise that the reason why I didn’t feel busy or even involved in what I was doing was because my epilepsy has some of the features of dementia.
I was aware that a good percentage (10-22% )of people with Alzheimer’s (the most common type of dementia) develop epilepsy and I wanted to find out more about it so I decided to read Sally Magnusson’s book ‘Where memories go’ about her mother who had Alzheimer’s Disease. In its’ review The Scotsman wrote the book was ‘profoundly moving’ and I think that this is because it is clear in every page how much Magnusson (whose father was Magnus of BBCs Mastermind) loved and respected her mother, Mamie Baird, and, even in her mother’s darkest days, tried to understand what it was like to actually be her mother, to think like her mother, to approach life like her mother.

As I was reading the book I noticed three features of Mamie Baird’s, illness that were like my own. Firstly Mamie Baird tells her daughter that she cannot be herself – that feels disconnected. And that is exactly how I feel. It is not that I, and I suspect Mamie Baird, do not know who I am in a philosophical way – I have a strong identity; I know who I am and what I want out of life – it is that I have lost (or didn’t have in the first place?) a sense of who I am on a minute-by-minute basis. Somehow, when I go into a shop it takes me forever to decide which sticker I should buy to decorate my son’s book; when I stand in the kitchen and the meal needs to be made, the washing needs to be put on, the children are asking me to do something, I kind of stand still (my mum says I’m prevaricating) – I just don’t know what I am doing. And that decision about where to send my child to school. How is it possible to make a decision like that? But deep underneath the mush – the indecision and the lack of focus, I know squarely and powerfully who I am – but it just seems impossible to obtain.

The second feature my illness shares with Mamie Baird is a lack of sense of time. Magnusson describes a scene where she is standing on a beach noticing the waves and all that is around her and then she thinks about the past and memories of her father and then she remembers something that she has to do in the future and then she understands that her mother cannot have these thoughts – she cannot think about the past; she cannot analyse the present and she cannot think about the future and for the most part that is how it is for me – I sit in the present without connecting to how what is happening now connects to the past or how I can make plans for the future. And by future I mean the next day, the next hour – if the kids need an early night because they are doing something the next day, it sort of doesn’t occur to me.
And the third similarity my illness shares with Mamie’s is a lack of curiosity. I know, I realise what you are thinking, ‘Sharon, you have tonnes of curiosity,’ but I will illustrate otherwise. At my son’s birthday party last weekend my daughter’s friends helped me prepare the lunchroom whilst my son and his friends were at softplay. I started to put a drink carton at each plate. ‘Should we put some drinks in the centre, ‘ my daughter’s friend said, ‘that way the children can choose which flavour drink they would like’. ‘OK’, I said flummoxed as always – how does a child put these questions in her head which simply never in a million years would occur to me? And then she changed her mind, ‘It doesn’t matter – they can just choose where they are going to sit based on which flavour drink they like’ . ‘OK,’ I said really not knowing which was the right approach and also knowing there wasn’t one whilst realising at the same time that my daughter’s friend’s brain worked on a level that mine simply could not do. I know it might seem in these blogs that I am curious – indeed I am absolutely fascinated in how the brain works; in how we can make life better for people that are suffering; in what Hope G-d can offer people in pain – but these are intellectual curiosities, without substance, because I can’t hold facts. What I mean when I say that I lack curiosity is that I am not curious in the mundane – in the seemingly trivial but somehow very important things that happen every day and thus because of that, like Mamie Baird, I suspect my life even when busy, feels boring and a little dull.
As I said the reason why I believe I share ailment with Mamie is because many people with dementia also have epilepsy. Indeed my neuropsychologist said that my symptoms are similar to those of stroke and traumatic brain injury patients (TBI) – that is probably because some of these patients also have epilepsy as well . By all accounts Mamie Baird was an extraordinary person who led a full life with joy which makes her demise, likes those who have suffered a stroke, TBI and with epilepsy all the more tragic.
Election News
Just a plug to all those in the UK – please vote in today’s election! Voting for no-one isn’t a vote for democracy and at this time it is important that we exercise our right clearly and authoritively. But please don’t vote Labour. If you want someone to run a large corporation you don’t choose someone who has never held a management post, who makes friends with people that are notoriously bad for the company, and who although purports to value those who are different in his company is quite happy to let some of his supporters aggressively and openly be racist to a group of people who have contributed so much towards the corporation, and indeed, his own financial backers over the years .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

——————-

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.

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

11. 12th August 2016 On Miracles

On miracles

So the miracle that I wanted to happen didn’t happen – I didn’t get to see the doctor I wanted to see  and, rather grudgingly, I have to accept that G-d works in mysterious ways, of which I am never going to understand.

However,  another very important miracle did happen to me this week and whilst thinking about miracles I have concluded that there are three reactions that people, including myself,  have towards them (I calls these ‘attitudes to gratitude’).  The first is the Ferrari type reaction. And this was the reaction I had to my miracle this week. My miracle was this – my daughter got potty trained.  Let’s face it with my organisational skills and the memory of a goldfish potty training was never going to happen.  But my daughter was ready and all she really needed was a little bit of help.  So piff puff poof – the miracle happened and someone I didn’t know well (and not someone who knew my problems) , but who was looking after her,  was offered to train her.  Now miracles don’t just happen by themselves – the sea would not have split unless Moses had actually got there – I had to find this person and this person and this person had to offer.  So I thank G-d, from the bottom of my heart, that together Her help, my help and the stranger’s help my daughter has now  been potty trained.

The second attitude to gratitude is this:- thanking without thinking.  A lot of people do this – whether they are religious or not eg they say ‘My father recovered from his operation, thank G-d’ ‘My daughter is going to get married, thank G-d’ ‘It’s a miracle that you ever got here considering the traffic was so bad’.  In Judaism there are plenty of opportunities to thank without thinking – you can say a prayer before and after you eat food, a prayer after seeing a rainbow, a prayer when you wake up and before you go to sleep and another most excruciatingly after you go to the toilet (NB – you are not allowed to say it in the toilet – you have to come outside and then tell everyone, by the fact that you are whispering the rather long prayer , that you have done a number one or number two). But for me most of the time (and I’m sure for a lot of other people) these types of thank yous are superficial – they are just a tone of phrase. It’s like saying thank you to your mum for making you a cup of tea – you don’t really mean ‘Thank you mum. You have gone to an awful lot of effort – firstly you thought to ask me if I was thirsty then you switched on the kettle and got out the mug that I like, the teabag, the milk and the sugar  etc etc’ .Thanking without thinking is often just being polite.

And then there is the third attitude to gratitude – Nothing. It’s as if I didn’t say thank you for the tea my mum made or I didn’t think how ‘lucky’ I was that my daughter got potty trained. Even if I didn’t believe in G-d, surely it is polite just to be thankful for something inconsequential or very important, to give me a sense that I am not in control of everything and something else has given me a good turn.

In noticing these three attitudes I realise that the preferred option is Ferrari – to be genuinely grateful for seemingly inconsequential (ie to come out of the toilet and to be genuinely grateful for the ability to function as you have and to meaningful say a prayer or a little thank you to the Power that Exists in the World) and larger acts (that my daughter has been potty trained).  However, thanking without thinking, to some extent does the trick but not being grateful ever for absolutely anything is probably going to make you miserable your whole life. So even in my wholly unpleasant situation, I am trying to have the Ferrari attitude to gratitude.  It keeps me going in difficult times.

In other news – there isn’t much I am afraid.  I was hopeful that the ‘It isn’t what you know but who you know’ approach might work, since someone I knew, knew someone else who knew someone else who was very important in the world of epilepsy.  However all that person can do is refer me to the person that I already have an appointment with in mid-October.  This October doctor is apparently the only person in the country that can help me (if anyone knows anyone who knows anyone who knows someone who knows about cognition/ executive functioning and epilepsy/ neurological diseases in this country or abroad please let me know).  So whilst I am waiting for my appointment and if I get my act together I am going to go to a naturopathic pharmacy and get the ‘medication’ that the naturopathic doctor has prescribed for me and see if that helps me.

———–

And for those observing Tisha B’av a little story – My son wants to be a builder when he grows up.  His biggest ambition is to repair the Western Wall because it has holes in it, where people put their ‘wishes’. He is very sad about the fact that it is broken.  My son is hoping that with his skills, and G-d’s help it will be rebuilt speedily within his days.

https://knightstemplarinternational.com/2017/10/miracles/

 

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

2. 4th July 2016 – Do we really have free will?

2 July 2016 – Do we really have free will / A note on staying in hospital on Shabbat

I like to think that my eldest daughter (aged 8) is mature for her age.  ‘You know sometimes’, she said to me the other day, ‘it seems to me that you just don’t think before you do things’. ‘Yes, I know’, I said ‘that’s why I am going to hospital, so the doctors can find out why that is’.  After all if when I take the drying out of the machine and some of it falls into the pile of dirty washing on the floor and then I wash both clean and dirty clothes in a new cycle and I do this time after time after time, it does look like I am not thinking.  ‘But everyone has control over their thoughts, don’t they mummy?’ she said and I said, ‘I’m not so sure’ and she went away slightly perplexed.  And even for an adult understanding that the truth is we don’t have as much free will over our thoughts and actions as we would like to think is disturbing.  I once met a woman who was beaten up by her husband whilst she was pregnant but she still went back to him.  I also met a man, suffering from obsessive compulsive disorder, previously he was studying to be a doctor, he had a wife and children who he obviously loved very much, but he fervently believed that asbestos was everywhere and couldn’t cuddle them and so slept on the floor – such was his anxiety that asbestos being could be on his bed or on his wife or children (he scrupulously cleaned the floor so he could sleep on it).  Surely if they had enough free will the woman would have left her husband and the man would get back into his bed and study to be a doctor.  Logically they knew that what they were doing didn’t make sense. But they didn’t have as much free will as they would have liked and they certainly couldn’t pull themselves together or snap right out of it – just like I can’t snap right out of my mental state.

 

Samuel Landau, a rabbi, wrote an article about neuroscience in the Jewish Chronicle a few weeks ago.  Drawing from Rabbi Dessler he argued that we are all at different points on some sort of neuropsychological ladder or axis and we can use our internal resources (and maybe some drugs and whatever other help we need) to ascend or descend it. But we should remember that we are all at a different point to begin with.

Thus for some people it is genuinely harder to pass that exam, to speak kindly about other people or to not take advantage of those weaker than themselves. And for me, I start at a place of impaired cognition and I realise that life has been genuinely more difficult for me than it has for some others.  And sometimes, even trying harder, has not worked. But we all start in different places and I, as many people do, will be trying to use the internal resources that I have to ascend this ladder.

 

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A note about staying in hospital on Shabbat:

 

As an observant Jew on Shabbat I cannot use electricity or my mobile phone, use light switches and there is an endless list of other things as well (eg no harvesting of crops). We also have special rituals like women lighting candles to bring in shabbat and saying special prayers over wine. So it has just been Shabbat and over this period I have, more or less I kept to those things.  It was very tempting not to use the electric button to put the hospital bed in a more upright position, but I did not.  However, I am not a saint and I did watch Pretty Woman in the lounge because it was already on and there wasn’t much else to do (strictly speaking this is OK because I didn’t turn on the tv but it isn’t what we would call ‘in the spirit of Shabbat’).  However the main difference about Shabbat in hospital and Shabbat at home is that in hospital it does not have the same qualitative feel, the same awareness that you have put all things aside and are dedicated to spending time with your family and friends, reconnecting and refreshing (although obviously if you feel like complete shit whether at home or in hospital you are still going to feel like complete shit on Shabbat – it isn’t a miracle cure).  The saddest thing for me was that I was unable to light candles.  The hospital were not keen on the idea(!!!) so I asked a rabbi what I could do instead and he said I could switch on an effervescent lamp and say the blessing on that. I did this but of course it wasn’t the same.  Until tomorrow xx

 

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1. July 1st 2016 – epilepsy and me

My eight year old daughter, Gabriella, had choreographed a dance routine with her friend for her school show, ‘Year 3’s got talent’.  They had rehearsed at every available opportunity – at break-time, during playdates and at home by themselves.  They had chosen their own music, decided what they were going to wear and how they were going to do their hair.  I was very proud.  I was more than proud. Gabriella had worked together with a friend in a dedicated way to create something original.  But as I sat there waiting for the show to begin I knew that I wasn’t going to view the dance routine in the same way as the other parents.  Throughout the routine I was asking myself, ‘What aspect of the dance should I be looking at?’, ‘How do I tell whether this part of the dance routine is good or not?’, ‘Is it in time?’, ‘Should I be looking at my daughter’s friend now or should I be looking at my daughter?’  I knew that there was nothing I could do to answer these questions. My mind is a permanent fog.  And then before I knew it – quite literally – the dance had finished.  The mother of Gabriella’s friend had already got up and congratulated her daughter with a cuddle.  I was slow on the uptake and another mother congratulated my daughter before me (not that I blame the other mother – I was slow). ‘Thank G-d I am going to hospital,’ I thought, ‘so that the doctors can understand what is happening with my brain’.  The experience of watching the show was simply too painful for me and I desperately wanted to sort it out.

So here I am at the epilepsy hospital so that they can carry out an intensive assessment.  The theory is that I might be having lots of seizures, where I lose consciousness for a second or two, and I am not even aware of them. This is the hidden face of epilepsy.  As I am learning epilepsy isn’t just about having very obvious clonic tonic seizures which look dreadful, and can cause those having one to injury themselves.  It is also about small millisecond seizures that the person having them might not be aware of.  It is also what happens in between seizures – the epileptiform activity and how that impacts on cognitive function.  This epileptiform activity certainly seems to be impacting on mine – for example I mostly don’t process information (eg my three year old had decided to take off her wet nappy – I also saw that next to the nappy was a pool of water but I didn’t connect the two pieces of information – I didn’t think that the water was urine I thought that it was water), and my memory is very poor (eg if my husband talks about our holiday last year I can remember the fact that we went on holiday but the name of the resort or the details of a particularly day trip that we went on escape me).  But when talking to me no-one would know the difficulties I am facing every minute of the day – indeed this is the hidden face of all mental health illnesses because although I am in immense pain no one (apart from you because I have explained it to you) knows.

However, you will be pleased to know that I am doing 100% better than I was last year when I watched my four year old son perform the Gruffalo show at nursery.  My cognitive function was just as impaired then but I didn’t know that this was the problem.  ‘Why does this show feel boring?’ I asked myself.  ‘I just don’t want to be here’ ‘All the other mums seem to really enjoy watching their child in the show – why can’t I?’ ‘Why am I always like this?’ ‘Oh I think I will just go home and kill myself’.

So starting on Monday, I am going to be in a hospital room for five days and I will not be allowed to come out of it.  I will be wearing sensors attached to my head to measure brain activity, using an EEG, and I will be videoed from all angles.  The idea is that doctors will be able to spot on the video when I am having seizures and measure my brain activity at that point.  And, please G-d, on the basis of those results they will be able to make recommendations as to how to treat my epilepsy.

I will try and write a blog every day – I will be seriously bored (but of course the news is always a drama to watch these days, what with Brexit, the British elections, general political turmoil and of course there is always Wimbledon).  But just to let you know that I might not because I might forget to write.

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