25th June 2017 – Epilepsy – Not ‘just’ a seizure disorder

Epilepsy – Not ‘just’ a seizure disorder

Nearly a year ago I wrote a blog explaining epilepsy as I knew it then.  Having spent many hours trawling through Facebook groups, trying to find an answer to my problems, I now know a little bit more.  Therefore, in this blog, I will explain the mantra of every discerning epilepsy Facebook group ‘Epilepsy – it is not just a seizure disorder.’

However, before I begin, I have to admit that epilepsy is a seizure disorder, so I better explain what a seizure is. A seizure is a sudden surge of electrical activity in the brain which can cause convulsions, a range of physical symptoms, thought disturbances, or a combination of symptoms. The most well- known is the tonic-clonic seizure – involving a loss of consciousness, rapid jerking of the arms and legs and falling to the ground.  But there are over 39 other types including absence (loss of consciousness for a few seconds), partial complex (staring blankly, repetitive movements) and myoclonic seizures (spontaneous quick twitching of the arms and legs). Epilepsy can be genetic, it can be caused by brain injury, a secondary disease (like dementia) or there can be no apparent cause (I think that mine was caused by a slight knock to the head when I was nine).

Seizures are not pleasant to those that are having them in the moment, but it is the impact that the seizures have on the rest of their lives that can cause the real problems and here’s why:

 

  1. Your life becomes a little unpredictable (but not in a good way). Although some people find that they have certain triggers for their seizures (eg heat, loud noise, lack of sleep, drugs, alcohol and don’t forget strobe lighting) some triggers are hard to manage (eg stress, menstrual cycle, interaction with medications\ medication changes) and some are just unknown. And realising that at any moment you might not be in control of your body or your mind is just a little bit scary.

 

  1. Post-seizure impacts – Post-seizure you might have to deal with the physical consequences of a seizure eg I saw a photo of a person who had serious burn injuries because when she started her seizure she was holding an iron. But also post-seizure you might have to deal with the wooziness and fogginess that it leaves you with – I’ve have four clonic tonic seizure and it took be several hours afterwards until I was compos-mentis. I heard of one instance where a lady was raped post- seizure but she was only made aware of it because her ‘boyfriend’ told her, otherwise she would not have known.

 

  1. You can’t drive – Once you have a seizure the driving licence authority, quite rightly for safety concerns, takes your driving licence away. This is bothersome for me – I have lost some degree of independence, but it is not devastating because I live in a place with good transport links and my children go to school on a bus. But it can be devastating if your job requires you to drive or if you live in a place with poor transport links .

 

  1. Cognitive impacts – As I have explained in my blog the impact of these electrical surges are having on my planning, processing, ability to focus, memory and so forth is huge. I believe that this is not due to seizures as such, but eliptiform discharges, of which, when last measured, was having 16 in a 24 hour period. Many people with epilepsy suffer to some extent with cognitive dysfunction, and whatever the extent it can be distressing.

 

  1. Depression – people with epilepsy have a higher prevalence of depression. There’s probably more than one reason why this is so – for some it’s the anxiety of knowing that at any moment they could have a seizure; for others the side effects of the anti-epileptic medication; for others the loss of the driving licence; for me the cognitive impacts of the disorder or most likely it’s a mixture of factors including non-epilepsy factors. But for some people the depression related to the epilepsy can be worse than the seizures themselves.

 

And so in conclusion this is why, I hope you will agree, epilepsy is not just a seizure disorder. It’s a disabling condition that can have severe impacts on the person living with it at all times.

In other news

I have been taking my new anti-epileptic medication but I don’t like the side effects – when I am stressed I involuntarily stick out my tongue and become inarticulate.  My doctor looked in the BNF (the doctor’s medical bible of pharmaceutical side effects) and it didn’t list these as side effects so he said not to worry about it.  But I am worried about it and I won’t be sticking with this medication and I will discuss with him how I can come off of it. My next step it to go on a medicalised diet called the ketogenic diet – but to do that I need to be under a nutritionist and I have an appointment with her in October.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

7th June 2017 – On Dementia

I could say that last week was a busy one for me – I attended one beautiful batmitzvah, the following day was a beautiful wedding and then it was half term and I had three kids to looked after.  During half term was the two day yom tov – Shavuot. As an observant Jew this involves a lot of cooking – together with my husband we cooked 30 meals (as happily we had guests over the festival).  To top it off it was my six year old’s birthday party on the Sunday with all that that entails.  But I didn’t feel busy.  I didn’t feel busy at all. And I have come to realise that the reason why I didn’t feel busy or even involved in what I was doing was because I have some of the features of dementia.

I have been ready Sally Magnusson’s book ‘Where memories go’ about her mother who had Alzheimer’s Disease. In its’ review The Scotsman wrote the book was ‘profoundly moving’ and I think that this is because it is clear in every page how much Magnusson (whose father was Magnus of the BBCs Mastermind) loved and respected her mother and, even in her mother’s darkest days, she tried to understand what it was like to actually be her mother, to think like her mother, to approach life like her mother.

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

The second feature I relate to is a lack of sense of time. Magnusson describes a scene where she is standing on a beach noticing the waves and all that is around her and then she thinks about the past and memories of her father and then she remembers something that she has to do in the future and then she understands that her mother cannot have these thoughts – she cannot think about the past; she cannot analyse the present and she cannot think about the future and for the most part that is how it is for me – I sit in the present without understanding cognitively what has happened before or make plans for the future.  And by future I mean the next day, the next hour – if the kids need an early night because they are doing something the next day, it sort of doesn’t occur to me.  And the third feature is a lack of curiosity.  At my son’s birthday party last weekend my daughter’s friends helped me prepare the lunchroom whilst my son and his friends were at softplay.  I started to put a drink carton at each plate. ‘Should we put some drinks in the centre, ‘ my daughter’s friend said, ‘that way the children can choose which flavour drink they would like’.  ‘OK’, I said flummoxed as always – how does a child put these questions in her head which simply never in a million years would occur to me?  And then she changed her mind, ‘It doesn’t matter – they can just choose where they are going to sit based on which flavour drink they like,’ . ‘OK,’ I said really not knowing which was they right approach and also knowing there wasn’t one whilst realising at the same time that my daughter’s friend’s brain worked on a level that mine simply could not do.  I know it might seem in these blogs that I am curious – indeed I am absolutely fascinated in how they brain works; in how we can make life better for people that are suffering mentally; in what Hope G-d can offer people in pain – but these are intellectual curiosities, without substance, because I can’t hold facts.  What I mean when I say that I lack curiosity  is that I am not curious in the mundane – in the seemingly trivial but somehow very important things that happen every day and thus because of that, like Mamie Baird, I suspect my life even when busy, feels boring and a little dull.

The reason why I believe I share ailment with Mamie is because many people (estimated at 10-22%) with dementia also have epilepsy.  Indeed my neuropsychologist said that my symptoms are similar to those of stroke and traumatic brain injury patients –  that is probably because many of these patients also have epilepsy as well (again the statistics very).  By all accounts Mamie Baird, like many many people with dementia was an extraordinary person who led a full life with joy and achievement so she is indeed someone to aspire towards.

Election News

Just a plug – all those in the UK – please vote. Voting for no-one isn’t a vote for democracy and at this time it is important that we exercise our right clearly and authoritively.  But please don’t vote Labour.  If you want someone to run a large corporation you don’t choose someone who has never held a management post, who makes friends with people that are notoriously bad for the company, and who although purports to value those who are different in his company is quite happy to let some of his supporters aggressively and openly be racist to a group of people who have contributed so much towards the corporation, and indeed, his own financial backers over the years.

28th May – A multi-billion pound cost saving initiative that should be in every party political manifesto but isn’t – Spend £1 billion on Special Educational Needs and Disabilities (SEND) in schools 

Nothing breaks my heart more than knowing that I haven’t achieved my potential in life. And that doesn’t mean that I didn’t get good grades.  I got good grades at school.  But in employment and in the way that I organise my home life I haven’t realised my potential.

I now understand that the reason for my lack of achievement is because I have had, up until now, an (albeit rare) undiagnosed special educational need or disability (SEND).   My frontal lobe epilepsy has impacted on my cognition so that planning, processing and remembering things are difficult for me.  Before I was diagnosed life seemed difficult, but I wasn’t sure why.  But the truth is that I know that I am not alone in thinking that life seems difficult, but not understanding why.  I now know that there are tens of thousands of people out there who were not diagnosed with a SEND at school or who had inadequate SEND provision and who are living with the knowledge that they think they can achieve more, but somehow they can’t.

In contradiction to public perception some people with Attention Deficit Hyperactivity Disorder (ADHD), dyslexia, dyspraxia, Asperger’s Syndrome Disorder (ASD) can sit in a classroom all their school life, and if their parent’s or teacher’s don’t understand that something is amiss, still do OK at school but at the back of their mind realise that they realise that they are different from all the other kids.  They sense that they are not learning in the same way as other kids – in every lesson and every day they feel substantially different. Even if they have been diagnosed, sometimes provision is so poor that if their parents don’t push and push some more and push again they won’t get the help they need. And because people with these conditions aren’t treated their self-esteem can perish.  Perish.  It can literally fall apart.  Like mine did.  And in the end they go to the psychiatrist’s office or a prison cell – around 30% of people in prison have dyslexia and 20% have ADHD.

And even if children are getting some treatment at school, the stress that the system can put their parents under whilst they try to get that treatment can be enormous and can lead some families towards  breaking point.

So here’s my idea – let’s spend £1billion on SEND and this will create a multi-billion saving for the future. It will go a long way to helping hundreds of thousands of people achieve their full potential.  How will this money be spent? I think we should spend the money two ways – firstly we should look to a future where we don’t wait until something goes wrong – where all children have a neuropsychological/ cognitive assessment (or even some sort of brain scan), just like they currently have hearing and sight tests. Once children have been correctly diagnosed then the right treatment can be found – if there isn’t any diagnosis there can’t be any treatment. The tests are probably a long way off now but we should at least have this as a goal in mind and fund appropriate research to make it happen.

For those kids that have a diagnosis my second proposal is that every locality should have a SEND school where local children who are attending regular schools could be given extra specialist provision for one or two days a week .  It would mean that these children can meet other kids who are a bit like them – they will know that they are not alone in thinking the way they do – and they will also get the specialist support that their own school cannot provide.  There are already private schools that provide these services but there need to be publicly funded ones if real change is going to be made.

And how is this going to make a multibillion pound saving for the future?  In – in the long run it could reduce prison numbers; reduce referrals to mental health services; it could increase the incomes of SEND parents because their stress levels would reduce and finally as these children become adults it could increase their earning potential and indeed their potential in life. I am not an economist but that sounds like multibillion pounds cost savings to me.

NB For those that don’t know the British people are having an election on June 8th. The Conservative manifesto does not mention SEND – seemingly no improvements in this area need to be made; both the Liberal Democrats and Labour party mention it but both strategies are a bit vague and they don’t mention any extra funding. I realise that the £1billion that I mentioned looks like I worked it out from the back of a fag packet, but nevertheless, it would have been nice if one of the parties had at least put some numbers down a page which expressed their intent towards SEND.

In other news

Next Wednesday, and for those outside Israel, Thursday as well, the Jewish people celebrate the festival of Shavuot – a festival where we rejoice in remembering receiving the Torah from Mount Sinai. I was reading my six year old son a story (with thanks to PJ library) about a girl who was taking part in all sorts of exciting Shavuot activities at school in the week proceeding the festival – the children were going to climb a ‘mountain’ with the staff they had made, and then eat the lunch that they had prepared.  But the girl was getting very worried ‘I don’t think I’ll be able to climb a huge mountain,’ she said.  But her teacher said she should not worry because the mountain that they were going to climb, just like Sinai, was not a very big one because Hashem wanted to make Sinai, and therefore the Torah, accessible to everyone. The little girl seemed comforted by that. Except, for me at any rate, sometimes the challenges in life, seem insurmountable, the mountain, however small, seems too high.

10th May 2017 – The kindness of strangers

About a month or so ago 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 for that, 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 telling her to go in the wrong direction.  Although she was a stranger, I knew that she had come to be a friend and 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 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.  It all adds up.   A lot can be achieved by the kindness of strangers and we should proudly acknowledge when we give and receive it so that we become more aware that humanity is much more good than we are otherwise told to believe.

 

In other news

I said in my previous blog that I would start the ketogenic diet to assist me will my ailments.  However, I had a change of heart.  I thought that a diet would be much too complicated for me what with all that planning and decision making.  I decided to try out some new meds and go back to the diet if that didn’t work out.  So I started the meds but I have come out in a rash.  But the medication says to call your doctor if you come out in a rash – which doesn’t sound good.  I am awaiting a call from my doctor but it looks like I will have to start the diet after all.  This week I also went to a neuropsychologist to get assessed.  Last week I also went to the neuropsychologist to be assessed.  Next week I will also go to get assessed.  I don’ fit into 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’ me appropriate treatment.

23rd April 2017 – You are what you eat

Around the world, Jewish people, no matter what level of observance, are in a state of collective relief – Passover has finished for another year, and their digestive system can go back to normal. We have just spent a week eating flat bread, and excluding all other forms of wheat, barley, rye, oats or spelt from our diet (with an optional extra of rice, pasta and beans).  What with that and our other peculiar diet – kashrut (not eating milk and meat in the same meal is one thing but what sort of diet imposes that you have to wait one, three or six hours between eating one type of food and another???) – it seems that Jewish people understand an important maxim – ‘You are what you eat’.

The real reason behind these funny food laws is that the Jewish people understand that what goes into your mouth becomes a part of you not only physically but spiritually as well. The idea of Passover then, is not only to remember that Jews were originally slaves in Egypt and that they were set free by Moses and those wondrous plagues but also, on a deeper level, to become aware of those thoughts that we are slaves to  – be it envy, making decisions in haste, gluttony, or having poor cognitive skills and focus on freeing ourselves from those. Eating the right food at this time is an important vehicle for making that happen.  And by a similar logic eating kosher food on this deeper level, helps a Jewish person imbue a sense of their own Jewish identity, connection with God, and their place in the world so that they can enact this identity in the world.

And I am about to start another diet which I hope will give me spiritual relief – the Atkins diet. The Atkins diet is a high-fat, adequate-protein, low-carbohydrate diet that can be successful in weight loss.  The diet forces the body to burn fats rather than carbohydrates.  However when the diet is much more exacting and neurologists and dietitians are involved to measure ketones (an acid remaining when the body burns its own fat) it is called the ketogenic diet.  Traditionally it has been used to treat difficult-to-control epilepsy in children but now adults are being treated using a slightly different diet called the Modified Atkins Diet.  And I am now on the waiting list for treatment.  However, because my new neurologist thinks outside the box a little he said that I might as well try the Atkins diet in the meantime to see if it makes a difference.  I know that dieting is going to be a problem for me – we have a whiteboard in our kitchen with a list of our kids favourite foods – but I forget to look at the whiteboard, so remembering what I am supposed to be eating for my diet is tricky.  But I might as well give it a go.  Nothing to lose.

Thus just as I prayed during Passover that the food I was eating would somehow free me of my mental anguish, I am going to pray that not eating potatoes, rice, pasta and bread can help rejuvenate my mind to a state of peace.

Financial news

I have already been awarded Personal Independence Payment – the old Disability Living Allowance.  This is to help me with expenses because I have a long term disability.  However, I was also getting Employment and Support Allowance.  This was because I am so ill that I am not able to seek work.  However I have been place in the ‘The work-related activity group’. This means that the DWP has decided that my disability or health condition does limit my ability to work right now, but that there are things I could do to improve this.  I am really not sure what those things are, but I would LURVE the DWP to tell me.  Because I have been on the work activity related group for one year the ESA is about to stop. So therefore I am going to write to them with more doctors letters to request that I can be placed in the ESA Support Group – a group that means that DWP has decided that I can’t find work and that it doesn’t expect me to do anything to improve my chances of finding work.   

 

 

19th March 2017 – Puzzles

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 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 his niece/ wife to try and influence the king because he knows he cannot 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, miraculous that clearly shows the way that the characters should go. 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.  This 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 and difficult to see – the story of Esther and Mordechai’s story does turn out well in the end. 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 it looks like, for that moment in time at least, the puzzle pieces of my life finally looks like it 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 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.

 

25th February – 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 memory and  – my autobiographical memory – thus as with one third of people with my condition 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 make such a screwed up person as myself – 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 just does not happen in mine.  So in such a case I might ask my husband to help me out with the problem.

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 – she 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 – I have to pretend that I am having fair and open interviews you understand.  We are very keen on equality and diversity in this company.

SR:  Well nice to meet you – thanks.

In other news:   As you are aware I went for a 23456th opinion this week. The very well versed and compassionate professor of epilepsy at a top neurology hospital was the one who said that I had a problem with my frontal lobes.  He 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 and also said that I should try some ADHD drugs – but the drugs won’t work unless I am having enough sleep.  Finally he said that I need to go and see a neuro rehabilitation unit – which I have already been referred to – so that I can work out some strategies to deal with my condition. People that go to these units also include 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.’

NB:  The interview in this blog was made up for the benefit of readers’ enjoyment.

29th January 2017 – Functional Neurological Disorder – A serious case of man flu

A husband wakes up in the morning and tells his wife ‘I’m really not feeling very well today.    I can’t get out of bed.  I have an ear infection.  I have a saw throat. I have looked up all my ailments on the internet and I might be dying’.  ‘Go to the doctor’, his wife says whilst thinking, ‘Not man flu again’. Mysteriously the husband musters enough energy to go the surgery and the wife looks perplexed when he comes back and says, ‘The doctor told me I have an ear infection and that I should rest in bed for a couple of days’.  The wife can’t understand it and thinks, ‘I thought the whole man flu thing was psychological and now the doctor says my husband has a bonafide medical reason for being ill. The human body is very strange.’

We may never get down to the bottom of what causes man flu (although I am sure many a Phd has been written about it) but that’s OK.  It might cause a marital disagreement but not a divorce. But this week I wanted to introduce you to Functional Neurological Disorder (FND) – the condition that I have been diagnosed with.  This is an extremely serious condition – which even a man might think is more serious than man flu.   The symptoms vary greatly and can include blackouts,  extreme pain (so that you cannot walk upstairs), paralysis, seizures, partial vision, and memory and concentration difficulties like me.

We go back to the same couple – Man flu husband and Perplexed Wife visit a specialist (this is not a condition that a GP can deal with)  – the wife is very supportive of her husband and hopes desperately that something will be able to help him because she knows that his life has become unmanageable.  Her husband explains his condition to the consultant and he carries out lots of tests and then says  ‘We can’t find anything wrong with you – I’m going to call your condition Functional Neurological Disorder so that I can feel that I have done something for you.  Depending on what your ailments you might need physiotherapy, occupational therapy, medication or psychotherapy.  Expect to experience derision from the medical profession, friends and family alike who think that you are just making it up .   I will refer you to another specialist who you might be able to see in 6-12 months time.’  Perplexed wife comes out of the consultation and thinks,  ‘I do not understand the human body – but I don’t think these doctors do either’.

That is my rather biased account of FND.  It has also come to my attention (from Facebook groups – where else?) that people with this condition also have another bonafide condition such as epilepsy (like me), CFS, arthritis and others.  Thus my non-expert conclusion is that the rather all-encompassing condition of FND might be related to the  other conditions and it’s not wise to put all the conditions into one big lump.

Other news

I had said that I would write to you last week but unfortunately ….. I forgot.  And that’s the thing with me – I’m OK at picking up the kids from the bus stop every day but if something is irregular like this blog has now become or remembering that this Thursday and only this Thursday I will be meeting a friend I have to be reminded. Otherwise I forget (and my family are very good at reminding me about everything I need to do so it doesn’t come across that I forget that much).

I told my neurologist that I have been feeling really tired on my new drugs and so this week I had another EEG to see what was happening in my brain. I also had some Cognitive Behavioural Therapy to look at my thinking patterns and try to challenge them.  I’m really praying hard that I will find the magic key that opens the hidden door to a life filled with normality and gratitude.    I’m going to write on an ad-hoc basis and will let you know if anything interesting happens.

 

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 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 very wizzy ‘very warn’ app that tells her that her coat has had it’s day.  And then how does she put all this information together – I bought it two years ago; I can afford a new coat if I spent xx amount on it; the weather is about to change so what type of coat shall I wear?  I’m really not sure how people come to these conclusions after taking into account all the available information.  They seem to do it quite easily – but I don’t.

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 this excruciating pain. 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 – older girls have been bullying him at school and he feels ashamed of himself.  In the evening you want to relax and go to that movie that your cousin saw.   You sit next to someone who is quite fidgety and quite frankly a bit annoying.  He has always thought that he might have bipolar but has never been to the doctor about it because he doesn’t like the drugs – he got into a lot of trouble at school; has periods of elation but it is the extreme depression that really makes him feel that his life is hopeless.

In this open, diverse, multi-cultural, multi-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 as we go through our everyday routines we should be aware that that depression exists anywhere, in every shape and form and it could be helpful just be that little bit warmer and open-minded about everyone that we meet.

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, enter 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 to try the new medication for two months, and as I mentioned, I haven’t seen any improvement. 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.

 

13th November 2016 – And Now I am 40

MiToday 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. There 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 birthday – 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 a few muddy patches and some pretty flowers).

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 they supported Trump/ Corbyn, because someone else’s child shouts was rude (or the parent was rude), because they had a certain type of job or identified to a different religious stream than I did.  But now I see that it is not useful or helpful. That everybody 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, 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.

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.