Posted on by sharonrossblog

20. 13th November 2016 – And Now I am 40

And now I am 40

Today is my 40th birthday.  I was going to keep it a secret, but what with Facebook and my newly found desire to tell everybody what is going on in my mind, it doesn’t seem possible.

I really wasn’t looking forward to my birthday.  Forty seems like such a milestone and here is a great amount of pressure attached to it.  If I lived in Perfect Land, when I turned 40 and evaluated my life to date, I would feel proud and humbled at my achievements and with renewed vigour I would see ahead of me green pastures and a pleasant land.  I don’t want to live in Perfect Land – it seems a bit dull.  But in Reality as I turn forty I see behind me a life lost and in front an unknown future.  But at least I know that I am not alone in dreading a milestone birthdays – plenty of people do (look at Rachel’s 30th birthday in Friends!) and there is still time in my unknown future to find a path towards a greenish and pleasant land with some dead flowers – I don’t want Perfect Land , after all.

There are two ideas I know about being 40 – firstly – ‘life begins at 40’ and secondly at 40 you are allowed to start learning the Jewish mystical philosophy of kabbalah. In fact both ideas point to the same thing – at 40 you can consolidate your knowledge of life and begin to see the world differently.

As I turn 40 I do see the world differently. I used to judge people – because their child was rude, because they were a hypochondriac or because they very easily got into arguments with others. But now I see that it is not useful or helpful and that everyone has their own problems and I don’t know why they act as they do.  I only know how I act as I do. So if I haven’t achieved everything I had wanted to at this milestone age, never mind, there is always another day, but at least I know that at this inconsequential age in my life I have turned a small corner in seeing the world a little bit differently.

In other news

I have now got much more clarity about my diagnosis.  I have been diagnosed with a dissociative disorder and my symptoms are mainly brain fog.  However, it might be that the brain fog is caused by absence seizures in which case my disorder is Non-Epileptic Attack disorder (NEAD) (a horrible name). Unlike clonic-tonic or partial complex seizures absence seizures are so short that sometimes not even the person who is having them is aware of them.  Both dissociative disorder and NEAD sit under the general umbrella category of a Functional Neurological Disorder (FND) – ‘a disorder where symptoms are of apparent neurological origin but which current models struggle to explain psychologically or organically’ (www.fndhope.org).  For some people the disorder is a reaction to stress or a traumatic event (eg being raped, seeing terror).  However, only 13% of patients successfully respond to therapy as a treatment – and I think I would be one of the 87% who don’t because I do not feel anxious and haven’t had major trauma in my life.

Unfortunately to date so called non-epileptic seizures have received a bad reputation.  Some doctors think that they are a sign of patients ‘putting it on’.  However, I can safely assure you that nobody would choose to lose awareness as well as control of their body and suffer immense brain fog and tiredness after the event ie have a seizure.  Especially if these seizures were happening several times a day and doctors could not find a medication or surgery that would help and the patient  didn’t know what was triggering them.

My case is slightly complicated by the fact that I have epilepsy.   EEG’s show that I have epileptiform activity (susceptibility to seizures) but I am not having seizures.  And therefore it might be that the activity alone is causing me cognitive difficulties. So therefore I am going to start next week a new anti-epileptic drug next week to see if that helps. If that doesn’t work I will try a ketogenic diet which is proven to help some people with epilepsy. Although, with my brain fog, I know that this will be difficult for me, there is more evidence that this works to control epilepsy than a neuro-gym or a dementia drug – which I don’t think I will be prescribed anyway.

As I said last week, I am going to take a break from blog writing for the moment.  I have seen enough doctors for a life time and now all I can do is wait and see if this drug makes a difference.  But I will keep you updated every now and then on my journey.

 

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19. 6th December 2016 – On nothing

I hear a lot of people say, ‘I wish I could do nothing all day.  I’m so busy.  I really need a lazy day.’  But my question is ‘Do they really mean nothing?’  For some doing nothing might mean not getting dressed all day, watching a movie and catching up on some housework and for others it means doing some gardening, spending time with the kids/ grandchildren and getting an early night.  However for a stereotypical depressed person doing nothing all day means simply that – doing nothing ie lazing in bed or watching tv all day.

However, as in all spheres of life, not everyone is a stereotype. Thus for some depressed people even though they are doing something (eg working in a stressful job, meeting up with friends) it feels like they are doing nothing because they don’t have the koi-uch – the strength, the energy, to fully take part in the activity.

At the moment I am not doing a lot and although doing nothing might sound like some people’s dream, honestly it’s not.  I have come to the conclusion that with a marginalised cognitive function it is difficult for me to do most things eg to have an idea of what needs to take place when my children come home from school; to make a decision as to watch a tv programme to watch or to read a book and to take it in.  I do these things but I now realise that it isn’t in the same way that other people do them and therefore it feels like I am doing nothing.

Most people don’t really want to do absolutely nothing – because really they want to be productive and to go to bed and say ‘I did bla bla today’.  If you can’t say these things to yourself, for whatever reason, you start to feel depressed and the whole thing becomes a vicious circle becoming harder and harder to get out of.  And on top of that a depressed person has to also deal with whatever is ailing them in the first place (eg stress overload, a psychological reaction to a difficult childhood, etc or having an oddball cognitive function like me).  And therefore just ‘snapping right out of it’ is like some sort of mysterious fairy tale that you have only heard about in books and the movies.  So, if and when I get better, I will revel in the fact that I am doing nothing, because actually I will know that doing nothing is actually quite a lot of something.

In other news

It’s is going to take the signatures of three doctors for me to get hold of the medicine which Doctor Second Opinion prescribed me.  Doctor Second Opinion needs write to by NHS neurologist explaining why he thinks I need this medication. The NHS neurologist will be able state that I need this medication which will mean that I do not have to pay for it privately. However, neurologists these days don’t actually prescribe medications – they prefer, I presume for budgetary reasons, to send a letter to GPs asking them to prescribe it.  So perhaps by next week my GP would have got this letter and I will be prescribed this elusive medication which may or may not help me.

Although I may think I am doing nothing, I could also argue that I am chillaxing after a hard few months of carrying out an extensive project entitled ‘the investigation into my mind’.  I’ve consulted with neurologists, psychiatrists, neuropsychiatrists, facebook groups and google and might soon have a conclusion to my project.  However, I have decided that I am not going to write this blog as regularly as I have been because I am worried that one week I will have nothing to say and I don’t want to witter on about simply nothing. But next week I will definitely write and because I know that I have something to say and of course I will still keep you updated on my journey, but just on a more sporadic basis.

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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.

 

 

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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!!!

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16. 2nd October 2016 – The Days of Awe

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

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

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

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

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

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

 

In other news

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

 

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

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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.

 

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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.

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13. 11th September 2016 – Parenting theories

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

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

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

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

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

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

Posted on by sharonrossblog · 2 Comments

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

Posted on by sharonrossblog

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.

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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/