National Epilepsy Week 19th May 23rd May 2013 What Treatment Do You Prefer?

National Epilepsy Week this week and there is a reason to celebrate, because this month Epilepsy Action magazine published an article about an epilepsy research project titled; ‘Which treatment would you prefer?’.

A very sensible question, its always nice to be asked what you want!

🙂

you can take part by following the information in this link;
http://www.epilepsy.org.uk/research/take-part/projects-you-can-take-part-in/patient-preferences-treatment-options

BIG THUMBS UP TO THIS PORJECT!

*Actually its full title is ‘People’s Preferences and Priorities for Treatment Options and Outcomes in Epilepsy’ but I like to get to the point.

BIG EQUALITY

‘Where’s your job you scrounger?’

I filled in all my forms,

The ones that said disabled,

The ones that said I’m worn.

 

I feel fatigue and lethargy from trailing JCP,

The department that plays ‘Vivaldi’ constantly at me.

I phoned up nearly thrice per day to say that I’m still ill,

The cancer in society wants me to foot the bill.

 

My debt to the economy,

The banks and to the lenders,

One more stat on the balance of

Parliamentary spenders.

 

Does it matter that I’m broken,

That is all you see?

What employer do you really think,

Will want to employ me?

 

I tried the Big Society

I tried to volunteer,

‘Sorry love but we don’t want

Your sort round ‘ere.’

 

Out of work and out of place,

Not the first time it’s been bad

You can’t miss the things you dreamed of

The things you never had.

 

Take pills for all these ills,

So that I can numb the pain,

That society doesn’t want me

That I may never work again.

 

Give them the satisfaction

Of driving me to drink

Another excuse for the recession

Tea totalling on the brink.

 

Do you know who I am?

Do you even care?

Not really, Not in the slightest,

The books are balanced so it’s fair.

 

Loss of consciousness is infectious

Computer says no! ATOS Who?

See I said it was infectious

The computers got it two!

 

Big Society, I know you’re out there

And that Cameron thinks your ace

But, would you know equality

If it smacked you in the face?

 

http://www.independent.co.uk/news/uk/politics/its-a-stunt-iain-duncan-smith-dismisses-demands-to-live-on-53-a-week-8556985.html

 

Advice call after epilepsy drug Epilim study – Epilepsy Care In Wales BBC News

In the wake of the withdrawal of legal aid in the ‘Families who were pursuing a legal case against the makers of an epilepsy drug have dropped their action because legal aid was withdrawn’ BBC News January 20th 2011

http://www.bbc.co.uk/news/uk-england-london-21523434 London reporting on Pregnant women ‘unaware’ of epilepsy drug risks 25th February 2013, BBC Wales are now reporting:

http://www.bbc.co.uk/news/health-12242857

“Campaigner Nicole Crosby-McKenna, from Epilepsy Action, wants the Welsh government to review the way information is conveyed to pregnant patients in Wales.

She said: “We would like to know, if they haven’t got access to an epilepsy specialist nurse, who is giving the women that information? Are the GPs passing the information on to women? And also, do the GPs have enough specialist knowledge to accurately give them pre-conception counselling?”

http://www.bbc.co.uk/news/uk-wales-21733153

See BBC news links for full details.

fire in the blood.

The Earthbound Report

This week has seen some excitement over the possibility of the first case of someone being ‘cured’ of HIV, generating a lot of hope and expectation for future treatments. This week has also seen a little attention on the story of HIV drugs in Africa, which is a much darker story. It’s been told for the first time in a new documentary, Fire in the Blood, which is currently screening in Britain.

It’s the work of Indian-Irish historian and filmmaker Dylan Mohan Gray, and it tells the story of how the pharmaceutical companies blocked the sale of cheap anti-retroviral drugs in Africa. It protected their profits, but caused an estimated 10 million unnecessary deaths. That’s a crazy number of deaths that could have been avoided. You would need to add the Holocaust and Stalin’s gulags together to match it. It’s little wonder Gray refers to it as ‘the…

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How do beliefs interfere with and prevent recovery? Is there a happily ever after to your fairy story?

I have been recovering from epilepsy for a long time and have become interested in reading a great deal about belief in relation to health and wellbeing. Other bloggers have touched on it recently, for example an excellent post from the http://workitwell.wordpress.com/2013/01/18/what-are-your-core-beliefs/

was titled ‘what are your core beliefs’.

Belief is a big word with few letters. Thinking about it might bring up ideas about your-self, others, religion, believing in something not believing in something, maybe even right and wrong.

So at what stage in your life did you start asking questions about the tooth fairy and Santa Clause?

Why do we believe what we believe and at what point do we begin to ask questions about these beliefs?

In the context of religion for example, asking questions about faith could be a welcome part of the discussion within a place of worship. Spiritual leaders may encourage debate about beliefs and use them as an opportunity to Shepard their flock to safer pastures.

However examples of how much resistance has been encountered in relation to changing beliefs can be found throughout history.

One such example of this would be the geocentric model (1) of the earth as the centre of the universe, and the resistance faced by Galileo Galilei (2) when he tried to present his case that things might be different.

Without reconsidering and changing beliefs such as the Earth as the centre of the universe, humans may never have made it to the moon. We could still be trying to leave the ground instead of taking into account new physics to take us upwards on an evolutionary path towards new technologies.

Can you imagine what would have happened if Galileo had suggested that you could communicate with people the other side of the world on an electric light box?

Bearing this in mind, how difficult is it for us to challenge or own beliefs and those held by people who are charged with our health care?

This type of difficulty is well illustrated by the distressing experience of Well Call me crazy here:

http://wellcallmecrazy.wordpress.com/2013/02/16/the-irony-of-it-all/

Having had experience of how difficult it can be to hold the ‘reflective mirror’ up to myself at what point do you question the beliefs of your doctors?

It is a sad fact that the men in white coats are often given great power by us. We look to them to answer our health problems but sadly don’t question their fallibility, and even if we do we can easily be put off by the sheer dazzling power of the white coat complex.

‘With great power comes great responsibility’ (star wars), which is sadly often abused. Pharmacy is big business and there are many millions of billions of motivations why modern medical culture doesn’t encourage us to ask questions about what is in our medication, how does it work, and what is it doing to the body?(3)

Great strides have been made by modern medicine in the mechanistic understanding of the body and yet the deities charged with our health care are only human. Why do we not ALWAYS ask what are you putting into my body?

A lot of people like my-self may have had the experience of being told that they would be on medication for life and that they need to be cured.

I prescribed to this belief for many years, despite experiencing side effects that were detrimental to my health and emotional wellbeing. This belief was driven simply by the fact that I thought my doctors new best. As a result of taking medication without question I didn’t get any better and ended up with significantly more health problems as a result.

I can’t remember exactly when I began to question the men in white coats, but I can remember that it was after I began to seek help from a white coat who went against the grain and decided to reduce my medication. The problem was it was turning me into a zombie – and zombies defiantly don’t think for themselves or ask questions.

My white coat was actually not convinced that I was epileptic at the time, so although I have to give him some credit for removing the medication it wasn’t because he had acknowledged that I am epileptic; although this did change once he had removed enough medication to find my EEG.

Whilst alternative therapies continue to be held up as many things (including the last resort for patients such as myself) there are a number of common denominators that I feel are important to mention.

The power of belief.

I have been following the work of Lissa Rankin MD.(4) You may have seen her TedX talk which I have posted at the bottom of the page. The placebo and nocebo effects are covered and Lissa speaks about the work of the institute of noetic Sciences (5) spontaneous remission project.(6)

Lissa’s blog has recently run a 4 part series http://lissarankin.com/is-it-your-fault-if-you-cant-heal-yourself-part-1 which asks is it your fault if you can’t heal yourself? This question in particular is relevant to recovery from ill health and was sparked as a result of the suggestion that we perhaps may be able to heal ourselves without medication and/or despite it.

Lissa’s work is an encouraging step towards introducing the notion that the body and mind may be intrinsically woven together in a more complex way than is currently outlined by modern Big Pharma medicine.

Would now be an appropriate time for Western medicine to start asking questions about how the mind is woven into the fabric of the body? Or is it too much of an expensive and painful prescription to swallow for Big pharma?

For me I it is not too late. I have had the lights turned on. The fog has lifted, and now I can ask questions.

For years I have been labouring under the impression I can’t learn, but last year I went to college and got 88%, 84% and 69% in exams in the same month as having seizures all month. I have spent this week twitching and seizing but I can still think.

The question had to be how?

All the time I couldn’t think I believed it was because I have epilepsy.

Now I have come to the conclusion that this isn’t so. I couldn’t think because I was on vast quantities of mind bending prescription medications.

I have had to address my core beliefs.

It has been very challenging and I still haven’t had time to integrate this new view of myself into my mind and body.

Socially epilepsy can be a very stigmatising health problem to experience. My experience has made me question how much society, attitudes, and beliefs play a part in recovery.

Thankfully I feel like I have been given a second chance. Realising that I can think and study has meant that I can go back to college to study with the support of my family.

Maybe one day we will all believe that the body, mind and environment are linked and that they are all as necessary for health as each other; just like we can now see we are only a small planet in a solar system in a universe that doesn’t revolve around us – or does it?

This post below illustrates how a different world view can influence recovery, and how diet is important to blood chemistry.

http://freeupliftingbooksonline.wordpress.com/2013/02/15/cup-of-green-juice-for-life-eating-light-with-michiyo-mori/

Why do we consistently reach for pills when diet can be so powerful?

It is sad to think that so many people may never know who they are without medication. I am glad that I found out.

http://www.youtube.com/watch?feature=player_embedded&v=LWQfe__fNbs

Lissa Rankin MD TEDX

1)http://en.wikipedia.org/wiki/Geocentric_model#Historical_positions_of_the_Roman_Catholic_hierarchy  Geocentric model

2) http://en.wikipedia.org/wiki/Galileo_affair

3)http://www.alternet.org/story/147318/100,000_americans_die_each_year_from_prescription_drugs,_while_pharma_companies_get_rich

4) http://lissarankin.com/is-it-your-fault-if-you-cant-heal-yourself-part-1

5)http://noetic.org/library/publication-books/spontaneous-remission-annotated-bibliography/

6)http://noetic.org/research/program/consciousness-healing/

Guest Post – Who Am I?

Today I am very honoured to have a guest blog post from http://rosewinelover.com/

Thank-for sharing your experiences!

First of all, I would like to thank Epilepsy Me And Neurology for inviting me to guest blog here. This has added a whole new aspect to my line of “work” – to advocate for epilepsy  from my living room, reaching a target audience all over the world.

So, who am I? Allow me to introduce myself…

My name is Gemma. I’m a thirty-nine year old housewife, married to a wonderful man who I have been with for five years now. I have a profoundly autistic son from a previous marriage, who lives with a foster family because I am not strong enough – physically or mentally – to be able to handle his behaviours without significant harm coming to others and myself. I do love him fiercly though, and so my husband and I visit him as often as we can.

‘Disability is a crushed spirit’ as defined by Aimee Mullins –‘Ability’ or ’Disability’ what is it all about?

For me disability is about education and empowerment. Of myself and others.

Not talking about disability, in my case epilepsy, leads to fear and ignorance, it creates taboo and prejudice.

Not embracing epilepsy or disability as a part of me would be to deny my whole self. Until it sits alongside me as my reflected other half I am not whole.

Treating disability with a ‘Fight Club’ mentality (The first rule of Fight Club is: you do not talk about Fight Club) (1) will not lead to health (you only have to watch the film to see how destructive this type of thinking can be! (2)).

Disability for me is about acceptance of myself, but in the wider social context to be accepted by society would be the ideal.

Not accepting our differences leads to disharmony within the self and society.

There is a fine line between ‘accepting’ and ‘labelling’ disability. It is about how we see ourselves as much as how others see us.

http://www.drfranklipman.com/aimee-mullins-redefines-the-word-disabled/

Frank Lipman’s blog about Aimee Mullins is one of my favourite posts from 2012. In it she talks about all the disempowering negative language that is associated with the word ‘disability’, and gives her new definition.

One of the most frustrating things about having epilepsy is people who tell me I’m sick. Actually, they often never get as far as the word disability, I am ‘sick’.

Disability its self is a big label to be handing out, but sickness!

Normally, I might add, my personal experience of the word ‘sickness’ is that it is banded about in the context of work!

I am NOT sick, I am not DEAF, I am epileptic, but I am capable, I am intelligent and I can use my voice and prove everyone who ever said I can’t do something that they are wrong about me! I don’t define myself by my disability but it really did help to make me who I am today.

‘Disable’, (verb)

To crush a spirit, to withdraw hope, to deflate curiosity, to promote an inability to see beauty, to deprive of imagination, to make abject.

Ant.  To make poss-able

Aimee Mullins 2009 new (and better!) Thesaurus  2009 Edition

Here she is in her TED talk, which is titled ‘The Opportunity of Adversity’.

She’s my heroine.

1)      http://uk.imdb.com/title/tt0137523/quotes

2)      http://en.wikipedia.org/wiki/Fight_Club

some of you may be interested in making a contribution to this post about ‘abiltiy’ or ‘disability’. I know I am.

The Autistic Voice

Hi Readers

Playing devil’s advocate today…

I recently gave a session on autoethnography and reflexive writing at Sheffield Hallam and I included several examples of autoethnography of my own.  One example was some reflexion I had done during the Paralympics.  Someone suggested I put it in a blog to encourage debate:

‘So the past month has been about planning, and watching the olympics and paralympics, which have really got me thinking about disabilities – in fact it is not about disability but all about ability.  Even the language used is interesting – political correctness talks about people of restricted height for example, but paralympics talk about dwarfism.  Language is much more direct, honest and matter of fact.  Is PC for the benefit of the ‘inflicted’ or is it to make the public feel more empathetic to individuals’ feelings?  Do we worry too much about upsetting people?

One amputee…

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Invalid and Invalid – A walk on the dark side of health

One word I hear mentioned a lot in relation to health is invalid.

Not so much as a description of a sick person, but from the mouths of the sick I hear a lot of;

‘My feelings aren’t valid’

‘I feel invalidated’

‘No one listens’

‘I need an advocate’(1)(2)

From the vulnerable I hear it crying out like an echo, coming up again, and again, and again.

It’s like a sound that isn’t heard.

Why do sick people feel invalid? Why do we need advocates to speak for the sick? Does being sick mean that you can’t speak?

Or does it mean that others don’t hear what is being said?

There are lots of situations where having another person or ‘advocate’ to fight for someone else’s corner is necessary, not just in legal situations but in health settings as well.

I decided to look at where the words invalid and invalid come from.

One word two different meanings. (3)

One is ‘invalid’ in relation to sickness, one means ‘invalid’ in relation to having no cogency or legal force.

How does suffering from disability, illness or injury lead to invalidation?

How did sickness become to invalidate? (4)

As I read around the subject I came across this article http://eqi.org/invalid.htm it defined invalidation in the following terms;

‘Invalidation is to reject, ignore, mock, tease, judge, or diminish someone’s feelings. It is an attempt to control how they feel and for how long they feel it.’

‘Psychiatrist R.D. Laing said that when we invalidate people or deny their perceptions and personal experiences, we make mental invalids of them. He found that when one’s feelings are denied a person can be made to feel crazy even they are perfectly mentally healthy’.

‘Invalidation goes beyond mere rejection by implying not only that our feelings are disapproved of, but that we are fundamentally abnormal. This implies that there is something wrong with us because we aren’t like everyone else; we are strange; we are different; we are weird.’

‘Psychological invalidation is one of the most lethal forms of emotional abuse. It kills confidence, creativity and individuality.’

The article ends with;‘I still remember many years ago when I was driving my car thinking about how people in my family would so often argue and debate about everything. I stopped the car, opened my laptop and wrote in a large font ‘

‘Feelings Are Not Debatable’

I found this article very sobering,

Not only can people feel invalidated when they are unwell, but by actually invalidating people’s emotions healthy people can become sick.

The article actually links this type of invalidation to personality disorder. (5)

This made me think about another area of invalidity.

In Britain there has been a welfare state (6), which has supported the vulnerable and provided subsistence level state benefits to live off.

In 2008 a new benefit called ‘Employment and Support Allowance’ was introduced to replace the old ‘Incapacity Benefit’.

As part of ‘Employment and Support Allowance’ sick people have to complete a questionnaire and sit a medical assessment.

‘Charities and disabled groups say the assessment is “not fit for purpose”, with appeals against 40% of claims that are turned down. They cite cases of suicide where the coroner has said denial of benefits was a contributory factor. The BBC’s Panorama this year found a case of a man who died of heart failure just 39 days after being found fit for work’ (7)(8) Randeep Ramesh Social Affairs Editor The Guardian Thursday 13 December 2012

So, invalids who don’t have their health needs validated and recognised by the state are actually dying because of the lack of recognition or validation of their health needs for benefit purposes.

In terms of health I would argue that validation of health needs, experiences and emotions would lead to a healthier society.

If invalidation leads to sickness I would argue that currently our society is heading in the wrong direction, people can only be well when they are valid.(9)(10)

1)      http://www.mind.org.uk/help/rights_and_legislation/mind_guide_to_advocacy

2)      http://en.wikipedia.org/wiki/Advocacy

3)      http://www.thefreedictionary.com/invalid

4)      http://www.thefreedictionary.com/invalidate

5)      http://en.wikipedia.org/wiki/Personality_disorders

6)      http://en.wikipedia.org/wiki/Welfare_State

7)      http://www.guardian.co.uk/society/2012/dec/13/disabled-man-government-court-benefit-test

8)      http://www.citizensadvice.org.uk/not_working.htm

9)      http://www.thefreedictionary.com/valid

10)   http://ahmritanaturalmentalhealth.wordpress.com/2012/12/10/recovery-living-the-experience-of-hope/

Recovery – Living the Experience of Hope

more about recovery, this time recovery from mental illness which is not given enought advertising or promotion. A lovely post from a mental health advocate about a mental health advocate.

Ignite Your Life Though Action

I have found the link to this video in my spam folder, boy am I glad I checked it out. The message of Hope and Recovery from a Mental Illness Diagnosis from someone who has lived it, is a ‘must share’ to encourage everyone not to give up.

http://www.youtube.com/watch?feature=player_embedded&v=_FolgAZ3YuU

 

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