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33. 14th September 2017 – The New Year

Unlike secular self-improvement guides on self- improvement, which focus on learning new skills, increasing monetary wealth and setting targets the Jewish way focuses on middot – personal characteristics.  This way says that to improve ourselves firstly we must become aware of who we are, our strengths and our weaknesses.  We all have good traits such as being generous or hospitable.  But to improve we must focus on our weaknesses. If your weakness is that you are impatient, it would take a lot of energy and effort to try to be even a tiny weeny bit less impatient, but that’s what you should do, if your weakness was that you were always late then getting to one place on time might seem like an enormous obstacle but you should try it.  You won’t earn more money for making this sort of change but in Jewish terms you have achieved something absolutely huge and it is even said that perfecting just one of these character traits is the reason for the existence of humankind[1].

In Jewish tradition there is no better time to focus on middot than Rosh Hashana – the Jewish New Year (which falls next Thursday and Friday).  Thus, in Judaism, a new year’s resolution – to work on a particular middah (the singular of middot) – is not something superficial, but if thought about seriously, and over time and with sincerity and effort worked upon, can invoke real change in a person.

In theory I think this this method of self-improvement sounds great – self-depreciation is all too easy but then so is keeping to the same behaviour patterns year after year – so picking on the one middah that needs working on the most does seem like a sensible way to improve yourself. However, this year I have decided to take a break and not make any effort in improving myself at all (not that I did very well at it before).  I have decided that I am too ill to make such changes.  I think I do quite well to get out of bed, get my children to school in clean clothes, give them some sort of dinner and get them to bed (in a completely chaotic sort of way).  If I tried to give myself any other target I would surely fail, so what’s the point?  This isn’t because I am too lazy or have had enough of religion, it’s just that I’m too exhausted.  I don’t have the energy to self-improve. And looking around I can see that there are other people that might feel the same way as me – those living with cancer (and their spouse who is a full time carer); those who are chronically depressed or have dementia or for whatever reason life just seems to be a bit too much.  Surely Judaism should give me and these people a bit of a let our clause for the New Year?

However, having done a quick scan of Jewish law I have decided that there are two reasons for the get-out clause I and many others need not try to self- improve this year. The first is that I am ill and the Jewish law can be very lenient on those are ill (for instance if you need to use a car to go hospital,  because you are ill, on the Sabbath- a day that you normally wouldn’t be able to drive – then you can[2]).  And the second reason why I believe that I and many others who are ill, who are full time carers or who are generally exhausted and life-is-too-much don’t have to try at self-improvement is because that we are already expending all our energy  trying to, in whatever way, make life just a tinsy wincey better for ourselves minute-by-minute day-in-day out. Day after day I

write letters and phone doctors in the hope that I will achieve full health and this is a huge challenge.  Each ill person is on a different journey and faces different challenges but they are all hard and require extreme effort. In this way surely I am along with the other exhausted-life-is-too-much people surely acting in the best of Jewish traditions of self-improvement – of meeting an internal struggle straight on and day-by-day trying very slowly but steadily to overcome it.

Alternative therapy

I’m up for any crack pot idea if I think it will help me get better.  You name it, I’ve tried it – hair analysis, drama therapy, sacro-cranial therapy, cognitive analytical therapy and soon a new diet.  This week someone who I very much respect suggested that I went for some free alternative therapy which involved a very limited time commitment.  I was very much up for it. And so, in the spirit of self-improvement, this week I went to see a  Very Important Rebbe. For those of you that don’t know a Rebbe is a rabbi who has had a job promotion – he’s a rabbi and then some.  People seek a Rebbe’s advice because he’s on a higher spiritual plane than us mere mortals.  And I have to say, I was impressed with my visit. The Rebbe listened very carefully to what I had to say, gave me a blessing and a short regular task to carry out.  I actually thought the task was a lot more useful than the many tasks that cognitive therapists have suggested over the years and I truly felt blessed from his very sincere and heartfelt blessing. I don’t know if the visit will have any influence on whether I get better or not but as I said it didn’t cost anything and no harm done. So Sharon’s assessment on visiting a Rebbe: an alternative therapy definitely worth trying out.

 

PS  Happy tenth English birthday to my lovely daughter Gabriella, whose Hebrew birthday is the second day of Rosh Hashanah.  I don’t know if you will ever read this, but if you do you probably won’t be ten and it won’t be your birthday but I just I just want you to know that I wanted you to have a happy birthday.

PPS The Rosh Hashanah self-improvement thing is obviously a pretty hard thing to achieve many, if not most, Jewish people that I meet do not try at it.  That’s because it’s hard, they think that they might fail and maybe they will. And I believe that a compassionate all-knowing god understands that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[1] Shlah – Leviticus 1:18

[2] There are various law surrounding how you would use a car on the Sabbath if you are ill, so check them out – by speaking to a rabbi or Jewish person educated to a high level in Jewish law, if you think you will need to do this or if you’re just nosey. or Jewish person educated to a high level in Jewish law.

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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.

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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.

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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.’

 

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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.

 

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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.

Posted on by sharonrossblog

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

Posted on by sharonrossblog

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.

 

Posted on by sharonrossblog

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.