Posted on by sharonrossblog

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.

 

Posted on by sharonrossblog

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.