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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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15. 25th September 2016 – Equality for Mental Health and I have a diagnosis

There has been a lot of good work done to get mental health on an equal footing with physical health – for example those who have are mentally ill can now claim benefits and are covered under the Equality Act. However, there is work that the general public can do without the need of the likes of Theresa May and Jeremy Corbyn.  Today I present three ways that everyone can help achieving equality in mental health – through talking about it, through prayer (or thinking about those in distress) and through funding research.

Firstly – by talking about it.  And by this I don’t mean having a heart-to-heart about your problems – although just talking about your difficulties to someone else is obviously very important.  I mean just normalising talking about mental health.  I’m an experienced mental healthite so I was happy to ‘come out’ but if it’s your first time you just hide under a bush in embarrassment because you feel that no-one else could possibly understand (It’s easier to come out as gay).  And that’s a bit silly because one in four people have a mental health problem every year. So you know lots of people  with a mental health problem – they just haven’t told you about it.  In the 22nd century I pray it will be normal for a colleague who you don’t know that well to say ‘How are you?’ and you will feel quite safe to reply ‘I went to the GP yesterday because I was a depressed and he gave me some tablets’. ‘I am sorry,’ your colleague will reply. ‘I was depressed last year – I started exercising and it really helped.  I’ll be thinking of you.  Get well.’

Which brings me very nicely onto the second  piece of work that the public can do – pray/ think about/ send good wishes to people with mental health difficulties in the same way that you would people with physical symptoms.   As I have tried to describe mental health difficulties can reduce the quality of a person’s life just as much as physical ones – and you can also die or be physically harmed by them.  If a friend has a serious physical illness you might say ‘I’ll be thinking of you’ or ‘I’ll pray for you’.  Why can’t the same wishes be sent to someone with a mental health difficulty?  On online support groups for depression and epilepsy often a member will write a message telling the group of their distress and there is a beautiful tendency of other complete strangers to say that they are thinking or praying for them.  And thus we would know if there was equality in mental health if it became common place for those nearer to home sent these type of wishes to their loved ones in distress.

And lastly – donating money to mental health research charities would do a lot to get mental health on an footing with physical health.  I have now been diagnosed with a dissociative disorder (which I will talk about next).  This is after nearly twenty years of being in the mental health system and having been diagnosed with all sorts of weird and wonderful things before.  And I know that I am not alone with misdiagnosis – People can come into a psychiatrist’s office with generalised anxiety disorder and go out with bipolar or come in with depression and go out with social phobia.  It takes a long time to achieve the correct diagnosis and without the correct diagnosis the illness is difficult to treat.  Research into achieving the correct diagnosis is one of three research priorities put forward by the charity https://www.mqmentalhealth.org. The second one is understanding the effectiveness of therapies for each condition – because there is little point in correct diagnosis if there is not effective treatment.  Finally in the knowledge that 75%of mental health conditions start before the age of 18 there needs to be more understanding of what makes children ‘at risk’.  The charity also state that at the moment mental health only receives 5.8% of the health research spend (in the UK). And although there are charities like MQ for every £1 spent by government on mental health research the general public donates 0.3p. The equivalent for cancer is £2.75.  Therefore, a sign of equality for mental and physical health would be that charities like MQ research became ones that the general public were aware of and gave to generously.

In other news

I went to my expert neuropsychiatrist and he said something like – ‘ I am diagnosing you with a dissociative disorder.  You are distant from the world.  Although you have epilepsy what you are experiencing are not epileptic seizures. You are having pseudo-epileptic seizures.  You are depressed.  You have had some trauma in your life that needs to be unearthed.  Take some anti-depressants, exercise, eat well, plan to do something exciting and come back in three months’ time when you have figured out what’s wrong with you.  I will put you on a waiting list to see a therapist in six to nine months’ time’.  As I said – I believe that the diagnosis is correct – I am dissociative.  It’s just I don’t believe the cause.  I believe that my illness is neurological and not psychological, as he suggested. So I am still on my search down the crumbling dirty track road, looking for my pot of gold.  However, as I have said, diagnosis is key, and now that I have been correctly diagnosed I have been recommended the name of an expert in dissociative disorders and I am trying to track him down.

 

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14. 18th September 2016 – Self-Awareness

The purpose of psychotherapy, I am told, is to increase self-awareness – by becoming aware of who you are – you can begin to be proud of your strengths and work on your weaknesses.  And in becoming self-aware you become more accepting of yourself and thus are more self-assured and able to taken on the challenges that you face in life.

I never understood this process before but now I do – and I wanted to tell you that I have found that this process works.  It’s actually quite revolutionary and exciting!!!  Of course, you don’t have to go into psychotherapy to increase your self-awareness – I wise man I know once suggested that for a week I could keep track of those things which consistently crop up, which were difficult for me, and spot the pattern or common denominator in all of these situations. And in doing so I would find out what I needed to work on in life (Of course, I can’t keep a track of anything, so I didn’t do it!)

But by writing this blog I have dramatically increased my self-awareness. I have managed to articulate to myself (and others) that I have difficulty with processing information, with memory, with problem solving and with most cognitive functions.  But in doing so I have realised that none of this is my fault.  It is quite simply out of my control.  So if it takes me a long time to write a blog, to make dinner and I can’t quite ever understand what is going on in my diary, that’s OK. I don’t need to think I am stupid or be angry with myself.

Through this new understanding of myself I have come to learn the extent to which these difficulties are impacting on my life and thus have been very confident in my decision to seek medical help.  And for people with an undiagnosed neurological conditions the process of self-awareness should send them straight to a professional’s door-  a person who realises that they have an attention deficit (ie ADHD), periods of elation and also depression (ie bipolar), or that they have difficulty reading (ie dyslexia) and so on cannot work on their weaknesses by themselves – they need help (we all do from time to time). But of course, everyone can be healed through this process of self-awareness – if a person begins to realise that they are impatient or aggressive or judge too quickly – everyone has something – they can start to work on these negative character traits by trying each day to not be that way (and seek a professional’s help if the character trait is getting in the way of their life in an unacceptable way).

However because I have come to a new realisation about myself I can for the first time in my life be aware of my strengths.  For example I now know that can write and I like doing it.  I am persistent (according to an epilepsy Facebook group discussion this is a common characteristic of people with epilepsy) and I do care about other people. And in becoming aware of my strengths and understanding my weakness, I am more confident about myself, who I am and what I want out of life.

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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.

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13. 11th September 2016 – Parenting theories

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

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

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

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

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

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

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12. 21st August 2016 – On Tests

For the majority of people the tests that they do at school are the easiest they will ever experience.  Real tests are much harder – they are not something a person agrees to enter, there is no preparation and, seemingly, they are not something that they have a natural aptitude for.

There is an advert for a cancer charity on tv at the moment that says that ‘Cancer is the biggest test that anyone will probably every face’ – I’m not so sure.  Surely the test comes afterwards to the husband who has to raise his children by himself and try to explain to his children why the world is still beautiful.  And what about the test of a daughter of a high-achieving mother who has to find her own niche and come to feel proud of the person she is. Or 21 year old, whose father was an alcoholic and whose mother was not around much, who, aged 24, for the first time in his life gets a job (as a carpenter’s apprentice).  These are the real tests of life – everyone faces them – they don’t have to be dramatic or grand but they are true stories of tests of strength of character, courage and determination.

As I reflect on my life to-date I now see that I have had big challenges that I wasn’t even aware of as I was going through them.  I’ve had chronic depression, feeling suicidal all day long, feelings of worthlessness and I’ve had to really figure out, with the help of others, why it is that I feel that way.  But perhaps the biggest test is in-front of me – to find a resolution to my pain.

So I need to look for role models for those that have achieved great things to enable me to aim high and stay on track. With Rio 2016 coming to a close the Olympians are an obvious choice as role models who take seemingly impossible tests.  However, I wouldn’t choose my Olympian role models because they have won gold (although in contradiction to what I just said one of them did) but because of the challenges that they faced in getting towards the competition. My role models are Michael Phelps and the whole of the IOC Refugee team – a team as the name implies of athletes going through heartache and trauma[1] .  Michael Phelps, the American Olympic gold medallist swimmer, has ADHD, had trouble with inattention and couldn’t sit still in class.  His teacher once told him that he would ‘never be able to focus on anything’[2].  But he did – presumably with a lot of bumps along on the way – but he did it anyway. And everyone in the IOC Refugee team is a winner as far as I am concerned.  Each has their own story of trauma and heartache but yet each has somehow ‘miraculously’ survived to give others a sense of hope. They are role models because of their back story and although their achievement is amazing it is where they have come from which makes them inspirational.

But actually, for a true Test Taker role model I am looking for more than that – I am looking for the way in which they approached their test and for that my models are Abraham (together with Sarah), Ghandi and Mandela.

Even before the stopwatch was invented Abraham undertook ten tests. As an example – he was told by G-d to get up and leave his home and go to a place he had never heard of. Now this isn’t – at first they were asked to go, they thought about it for a bit, then they got used to the idea, and then they did a bit of research and thought about how they would earn a living and then decided that they would take the challenge.  This is one day being asked to leave everything you had ever known and (in a social media/ plane/ media  free world) get up and going because you were asked to.  Like all biblical characters, Abraham was by no means perfect, but upon his enormous tests he didn’t have a nervous breakdown in the middle and say that he was giving up and he was going to go back home and that he just couldn’t cope.  He had faith that things were happening for the best and he didn’t question it.

The only two other people I can think of who are like this are Nelson Mandela and Mahatma Gandhi.  They both had huge tests in their life (maybe not ten, but they were huge nevertheless) , they weren’t perfect, but they managed to achieve their goals with dignity, courage and grace (I would tell you more about their lives – I have read both of their autobiographies, but I can’t remember a thing).

I know that in this horrible test that I am facing I am not approaching it in even a tenth of a fingertips of Avraham’s, Mandela’s or Ghandi’s way.  Or even those Phelps and the refugee IOC team. I may go on about gratitude and miracles but I wobble, fall down, get up, whinge and then fall down again day after day.  But people like Avraham, Sarah, Mandela and Ghandi will always be the people that I, and many others, shall look up to because in their tests of life they persevered and came through stronger and wiser.

In other news: You guessed it – the reason I am withering on again about nothing is because there isn’t much news (isn’t life so often ‘nothing happening, nothing happening, something, nothing happening, nothing happening etc). After the ‘It’s not what who know but who you know’ approach failed because this doctor did not want to see me, I tried the Boris Johnson (our very quirky and quite funny Foreign Minister) approach in the hope that I could see my October doctor sooner.  Boris Johnson said, ‘The dreadful truth is that when people come to see their MP they have run out of better ideas’ so I wrote to my MP and asked him if I could see my October doctor earlier and he said something like  ‘I will do what I can do but this decision is out of my jurisdiction’.  I have however finally got the naturopath’s medication.  It tastes like nail varnish!! But I don’t know about how it impacts upon me as yet.  I’ll just have to try it out and see what happens. Also, just to let you know that I’m not going to be writing for the next two weeks.  Unfortunately my mind travels with me when I travel, but other than that I’m sure I will have a good time.  Hope you have a good break whilst I am away xx

[1] https://www.olympic.org/news/refugee-olympic-team

[2] https://www.understood.org/en/learning-attention-issues/personal-stories/famous-people/celebrity-spotlight-how-michael-phelps-adhd-helped-him-make-olympic-history

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11. 12th August 2016 On Miracles

On miracles

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

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

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

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

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

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

———–

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

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

 

Posted on by sharonrossblog · 4 Comments

7. 18th July 2016 -Mothering whilst ill

I am not the mother I want to be, but I know that I am not alone in thinking this.

As an example of my unmotherliness, I will explain to you what happens when my children come home from school. My eight year old says, ‘I want to watch tv – where is the remote control?’  Me: Spend 20 minutes trying to find it – I feel guilty because I probably lost it. Think to self, ‘I need to make dinner.  What shall I make?  Don’t know’.  ‘What would you like for dinner?’ I ask my five year old, ‘Pasta with tuna,’ he says.  Think to self, ‘Good plan – we have plenty of time to make that.  I will go and put washing on first because I haven’t done that today.’  Go upstairs to get washing. Think to self, ‘What am I doing upstairs?’ Not sure.  See three year old taking all the wipes out of the packet. ‘Why are you making a mess? Let’s go downstairs’. Take daughter downstairs and when at the bottom think to self, ‘I forgot the washing. I will go and get it.’ Go upstairs to get washing.  Me to self, ‘Must make dinner.’  My son says, ‘I am hungry!!’  Me: Feeling guilty that I still haven’t started making dinner,  ‘Have a yoghurt’, I say (only latterly so I realise that this will mean that he will not be hungry for dinner).  Put pasta on – Not sure how much to put in saucepan so use half the packet. Put washing in the machine. Fifteen minutes later pasta is overcooked and I call children in. Elder daughter starts to put mayonnaise in tuna because she likes it with a very specific amount of mayonnaise which I don’t understand. ‘Need to clear breakfast counter,’ I think – children cannot eat from it with that much mess. My son says, ‘I will get the glasses,’ (this is his favourite job). Me to self, ‘What do I need to do now? Oh yes get – Knives AND forks and serve youngest two good on plates which will fit their meal.’ And so it goes on.

So for all of you whose meal times don’t look like this – Kol akovod (well done) – I am in awe of you (and before you suggest it – writing a list of the 25 things that need  to be done when the kids get back from school does not help).  You have the gift of memory, processing and strategic thinking.  It turns out, I realise now, that strategic thinking is not just something that management consultants do.  Almost everyone does strategic thinking as a result of processing the information around them. It helps them to be organised and make on-the-spot decisions about inconsequential things.  If you can’t strategically think and your IQ is at reasonable level – life sucks.

So I am not the mother I want to be – I want to be present with my children, to feel that in–the-moment connection, I want to be a strategic thinker who understands what is best for my children and am able to prioritise their individual needs. I want to be the solid rock that they can count on to help them along their way. But right now I can’t be that person. Neurologically it is not possible.

However, as I said, I am sure I am not alone in not being the mother I want to be.  There are probably millions of other mothers who are in my position but they just don’t announce it on Facebook! (a very silly thing to do!!!).  So for all those who are going through a tough time – whether you are, bipolar, an alcoholic, having an acrimonious divorce or have cancer –  but-really do want to be a good mother (or father), here is a list of the benefits your children can get from your imperfect situation.  Your children:

  1. Have a much better sense that life can sometimes be hard and is not always the way they want it to be.
  2. Might have to fend for themselves a little bit more than other kids. If they really want something they have to go get it themselves otherwise it might not happen.
  3. They learn sometimes they don’t get what they ask for and that is OK

And in my case, which might not, unfortunately, apply to everyone, they also:

  1. Realise that if you are open about your problems other people often show kindness

Obviously if you are going through a difficult and trying time and think this list is a load of crap then I totally get it. But if you liked the list, I’m glad it helped you.

NB I made two factual errors in last week’s blog which I would like to correct.

  1. Firstly I said that 300 people had looked at my blog. However, due to me being confused 100% of the time I got the number wrong. Nevertheless, the data implies that most of the people I know are aware of my problems.   That’s the way it should be because if I had a physical problems most of my friends would know about it.
  2. Sadly, FedEx are not taking my hair sample to Germany – it was too expensive. The idea of a man coming to pick up my hair in a white envelope and taking it all the way to Germany to be analysed for deficiencies in mineral and vitamins sounded very romantic but it was not to be. However, through Royal Mail tracking services, I can now inform you that my hair sample took the late night flight from Heathrow and is now somewhere in Germany awaiting to be taken to Hersbruck.

 

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

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

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

 

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

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

 

———————-

 

A note about staying in hospital on Shabbat:

 

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

 

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Posted on by sharonrossblog · 4 Comments

1. July 1st 2016 – epilepsy and me

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

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

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

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

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

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