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

And now I am 40

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

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

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

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

In other news

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

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

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

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

 

19. 6th December 2016 – On nothing

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

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

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

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

In other news

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

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

16. 2nd October 2016 – The Days of Awe

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

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

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

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

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

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

 

In other news

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

 

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

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

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

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

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

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

In other news

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