26. 10th May 2017 – The kindness of strangers

  1. 10th May 2017 – The kindness of strangers

About a month or so I was standing at a bus stop outside Tesco and started chatting to an old lady ‘I need to go to the council offices,’ she said.  ‘Is it far?’ ‘No, I said – you could walk’.  But, my directions were a bit vague and I sounded uncertain and then she said ‘I think I’ll wait. I’ve only just lost my licence because I find walking difficult but it is a pain getting the bus everywhere.’  I told her that I also couldn’t drive and it was something that you just got used to. I said that the reason why I couldn’t drive was because I had epilepsy.  She sounded startled because she said that ‘I looked normal’. And I thought it was good that she now knew that people with epilepsy just looked normal.  ‘I do get very confused a lot’, I said, ‘That’s why I don’t drive.  It would be dangerous for me to drive’.

And as we got talking she told me a little about herself.  Every morning, she said, she got up and went and had breakfast at the local bistro because it was important for her to go and talk to someone every day.  And, although I felt slightly sorry that she had to do this just to get company, I also felt kind of proud of her, because she had found a strategy to deal with her loneliness that worked for her.  Just as she had learnt something about epilepsy, I had learnt something about the courage it takes to be old and deal with life on a day to day basis. I suggested that she looked up the University of the Third Age, because my grandmother-in-law had loved it and they had lots of interesting activities and she seemed to like that idea.  The bus came and I told her that the bus was going to the council offices.  But as we sat down, I realised that although it was the right bus for me, it wasn’t the right bus for her – the bus was going in the opposite direction for her.  I apologised profusely and felt awful.  And she said, ‘Don’t worry, it’s OK,’ and off she got at the next stop.  And do, you know I think it was OK.  I don’t think she would have been angry at me for making her go on the bus in the wrong direction.  Although she was a stranger, I knew that she had come to be a friend and that she could just accept that I had meant no harm.

Last week there was an alarming post on a Facebook support group I am on ‘ Please can someone speak to me, I’m feeling really down’. Up went one response ‘I’m here for you hun, if you want to talk’ and another ‘What’s up?’ and I pipped in ,‘Are you OK?’ But there was no response.  Only silence.  People started to get a bit panicky – ‘We are getting worried about you,’ said not one but a few people.   All in all there were about 17 responses to this post in 24 hours until finally a response came ‘ Sorry, for all the worry, I’m OK.  I had turned off my phone and was feeling really tired.’

We are taught and we teach our children to be so wary of strangers that we forget that humanity would not survive without the kindness of strangers.  Whether it’s giving a reassuring smile to someone walking down the street to who looks like they are having a hard time; giving directions to someone who is lost; picking up a scarf on the pavement and putting it on the wall so that the owner might find it or putting money in a charity box so that someone else can be helped, but you don’t know where – all these things can make a huge difference to someone’s life.   A lot can be achieved by the kindness of strangers and we should proudly acknowledge that when we give and receive it so that we become more aware that humanity is much better than we are otherwise told to believe.

 

 

 

In other news

I have started some new meds but I am still on the waiting list for the ketogenic diet. The medication says to call your doctor if you come out in a rash – and I am now awaiting a callback from my doctor because that is exactly what has happened to me.  It doesn’t look good. This week I also went to a neuropsychologist to get assessed as part of my neurorehabilitation programme.  Last week I also went to the neuropsychologist to be assessed.  Next week I will also go to get assessed.  I don’t not fit in a box, the neuropsychologist told me so altogether it will take three weeks for me to be assessed. She is trying to understand if my problems are more psychological or neurological and on the basis of her conclusions she will ‘prescribe’ be appropriate treatment.

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

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

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

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

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

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

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

23. 25th February 2017 – Final Diagnosis/ Sharon goes to a job interview

Super Important Interviewer (SII):  So, Sharon, as you know you are here today to be interviewed for post of Highly-Efficient-Super-Organised-Nearly-Perfect-Person.  My first question is – Tell me about yourself.

Sharon Ross (SR):  Well, I went to a very nice doctor last week and he said that my personality can be described by my frontal lobes.  The doctor said my frontal lobes are not working properly because I have epilepsy.  This means that I find processing, problem solving, decision making and planning very difficult.  I have a poor short term. I also have a poor autobiographical memory – I can’t describe the details of holidays that I have been on or trips to the theatre.  However, the doctor pointed out that the good news is, like most people with this condition -I have above average IQ and I am sociable.  But I am depressed a lot so that doesn’t make me feel sociable and I’m not super intelligent I’m just higher than the average IQ.  Of course, no-one can be described purely by their frontal lobes – I am a mother to three very beautiful children, I am a wife to the long-suffering Michael Ross, I am a sister, an in-law, and I have some very special friends.  I am a committed Jew – although I am finding it difficult to understand why God would screw up my brain so fundamentally  – and I live in the ‘ugly on the outside, beautiful on the inside’ town of Borehamwood.

SII: ‘ Erm, thank you Sharon.  That was very honest of you.’  Can you tell me about your strengths and weaknesses?

SR: I will start with weaknesses – as I said there are many.   Most people do not know this but when you are trying to organise your children’s lives it involves a lot of cognitive or executive functions such as planning and decision making.  And these are things that I just can’t do, no matter how hard I try. If two of my children have to go to two different parties on the same day at different times I just can’t work it out.  The algebraic equation that seems to happen quite naturally in someone else’s mind does just does not happen in mine.  So in such a case I might ask my husband to work out if it is logistically possible for two (or three) different people to go to different parties at different locations and if it is possible how they will get there and get back. I simply cannot do the algebraic equation in my head to work this all out.

And my strengths –  On the plus side I am very determined.  My children always go to birthday parties, no matter what.  Even if it is difficult for me to think through the logistics – I know it is important for them – so they go.  Indeed according to my sister and brother who ‘commissioned’ a very uplifting word art picture for my 40th birthday apart from determined I am also resourceful, caring and want justice.

I can also write.  I am writing a blog about my experiences at the moment which I have received good feedback from.  I am also co-authoring a book about London City airport – the editor, my father, is very sympathetic towards my needs and likes my work.

SII: ‘Last question Sharon, – Why do you want this job?

SR: I would like this job for three reasons.  Firstly I need routine.  I haven’t had a routine for a very long time and I find it difficult to get into one.  If I had a job I would have a routine.  Secondly, I would like to be productive.  Due to my deficiencies I very rarely feel productive and maybe this job would help me feel productive.  And thirdly – I didn’t think that I would get this job but my blog has thus far purely been me wittering on about nothing –  I wanted to spark it up a bit and thought this interview would do the trick.

SII: ‘Ok thank you for coming today’.  I am sorry and I don’t usually do this at interview stage – but I am not giving you this job.  This is for two reasons – firstly, your weaknesses are too vast – although I appreciate your candour. To be honest, I am not sure if you will ever be able to get a job.  And secondly I have already got a candidate lined up who I want to give the job to – it’s company policy to have fair and open interviews.  We are very keen on equality and diversity in this company. The person I want to give the job to has been working here on a temporary contract for six months and she’s very good.

SR: So we are both wasting each other’s time then?

SII: I guess so

SR:  Well nice to meet you – thanks.

In other news

The interview in this blog was made up for the benefit of readers’ enjoyment however, it roughly parallels what a very well versed and Compassionate Professor of epilepsy at a top neurology hospital said to me this week when I went for my 99th(?) opinion (obviously he said it in a much nicer way).  As I have said previous blogs although I did think that Very Important Doctor was correct when he said I had a dissociative disorder/ functional neurological disorder I did not think that cognitive behavioural therapy or antidepressants, which is what he suggested, would treat it.  It wasn’t working so I decided to stop the therapy.  I went for yet another (private) opinion and this professor said that although there was no clinical evidence (ie EEGs or MRIs) that indicated that I had frontal lobe epilepsy the symptoms that I described to him suggested that I almost certainly did. Compassionate Professor recommended a three stage treatment plan.  Firstly I need more sleep – I feel drowsy a lot and he was the first doctor who has told me that I need more sleep. Secondly he recommended a different type of anti-epileptic medication – but he pointed out that the drugs won’t work unless I am having enough sleep.  Finally he said that I need to go and see a neurorehabilitation unit – so that I can work out some strategies to deal with my condition – however at least six months ago I was referred to one by a different doctor but this referral has not yet come through.  People that go to these units are usually those recovering from traumatic brain injury or a stroke. Really I just want the magic pill to take away the pain that I am feeling.  Coming up with strategies to deal with my disorder seems too exhausting. But the nice compassionate doctor just said: ‘You’re intelligent.  You’ll be able to work it out.’

 

21. 15th January – An Update – Still Ill

After two months on my new medication my cognitive function has not improved and therefore I am still ill.  I know my cognitive function isn’t working because of hundreds of seemingly innocuous events that happen to me every day that make me think that my brain isn’t working. For instance a friend of mine told me that she bought a new coat because her current one was two years old and looking a bit worn.  I was really baffled – how did she know her coat was two years old? Has it got a ‘bought in’ date on the label?  No – she just knows it.   And how does she know the coat is looking a bit worn?  Has she got a high tech ‘very warn’ app that tells her that her coat has had it’s day.  And then how does she put all this information together and chose a coat that meets her personal taste, budget and the season. I’m really not sure how people come to these conclusions but I know that I just can’t do and that’s why I know that I am still ill.

The self-awareness of my difficulties is making me feel very warn and depressed. But unless I had let you into my little secret, if you met me you might not have guessed.  And that is the point.  Mental illness isn’t seen.  Nobody knows who is suffering, unless the person suffering tells you.

Say tomorrow you buy a card from a shop and notice that the shop assistant has beautiful nails and a bit too much make-up. But did you know that underneath that thin veneer the lady finds it difficult to get out of bed, let alone go to work each day because she feels like she can’t go on after she lost her husband two years ago?  In the afternoon you go to see your cousin who you haven’t seen in a while.  He seems his normal self and he talks about the movie that he saw last night.  Did you know that the reason why was wearing a long sleeve top was because he has gashes all the way up his arm – a sign of the harm that he inflicted on himself as a reaction to the bullying he had received from older girls at school?  In the evening you want to relax and go to that movie that your cousin saw.   You sit next to a man, in his 40s, who with his partner. He is quite fidgety and quite frankly a bit annoying.   If you knew him a bit better, and you knew about various mental health conditions, you might realise that he has bipolar.  The man has also always thought this – but he has never seen a doctor about it because he is scared to take the medication – the periods or extreme elation and then the inevitable depression mean that his relationship with his partner is suffering but he doesn’t know who to turn to.

In this open, diverse, multi-cultural, mutli-lingual, open to everyone society that we live in we are not as open to everyone’s behaviour as we would like to be. People cover up their anxieties with a superficial smile (and that’s OK) but other people are just not aware that that is what is happening. But as we go through our everyday routines we should be aware that that mental illness exists everywhere, in every shape and form and just being aware of that as we go about our business could help those suffering as they go about their’s.

Fashion news – for ladies – but it might interested men as well

Not many people know this but a size eight skirt can, in special circumstances, fit a person who is a size 14 (for those of you who are not British size 10/12 is as not too skinny not too fat size).  I know this because two years ago I lost a lot of weight due to depression – I went from a size 12 to a size 8.  For those wanting to lose this much weight the trick to this weight loss programme is simple – put less in your mouth, miss a meal or two here and there and don’t nosh. For me the best aspect of the programme was that I didn’t even realise that I was eating less.   However – now for the sad news.  I have now put on a lot of weight.  This is a side effect of my new medication.  I am basically on a see-food diet.  I see food and it must, no matter what, put it in my mouth. I am now a size 14 (it’s a secret – don’t tell anyone). However, and here’s the good news – some of my size eight clothes still fit me. They have to be the right type – an elasticated waist is a must, floaty is also good; the sort that you can cover up with a baggy jumper can enhance the look.  The skirts are quite comfortable and I have started to wonder what the point of clothes sizes are anyway.  So my top tip is if you are feeling a bit down about your weight – when looking for new clothes try on a skirt with an elasticated waist in a lower clothes size.  No harm in trying and if you buy a lower skirt size it will make you feel good about yourself!!!!!

Medical News

The doctor said that I should try the new medication for two months, and as I mentioned, I haven’t seen any improvement. As suggested by the Very Important Doctor I will now enter the bizarre world of going to therapy to improve my cognitive function.  I am not convinced that it is going to work but that’s the only thing that is being offered to me right now so I might as well try it out.

I have now analysed other routes available to me to find a cure to my problem. Option A – ketogenic diet (a specialised low-carb diet) which is proven to help people with epilepsy.  However, given my issues I think that I will find any dietary changes simply too confusing and therefore I wouldn’t be able to keep to it.  Option B – a neuro gym – this is one-to-one sessions with a non-medical specialist to discuss methods into improving my cognitive skills plus online training.  This is untried with people with the severe cognitive issues – it might be worth a go if I get desperate.  Option C – Investigating dementia.  Dementia and epilepsy are related because they are both cognitive disorders and people with dementia are particularly susceptible to epilepsy.  There is research that says that anti-epileptics can increase cognitive function in people with dementia – so why can’t dementia drugs improve cognition for people with epilepsy?  I did see some research which investigated that line of thinking but I can’t find it now (if anyone knows someone who knows someone who knows something about dementia please let me know). And so this story continues – even the author doesn’t know how it is going to turn out. But I will give you another chapter next week and after that we shall see.  Only the true Author, the Author of All Things knows how this story will end.

 

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.

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.

 

 

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!!!

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

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.

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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.