Thursday, October 23, 2014

a good health system means we have a modern society

i really do feel that the ONLY way we can judge a society is by how we treat people who are ill, marginalised and elderly.

this means in effect, making sure they are healthy, cared for and equal.

i cannot even begin to describe the lack of care, the lack of professionalism and the lack of management in order to begin, i mean BEGIN the journey of being called a modern society.

Enda, our Enda says we are a modern society and because we are a modern society he isn't putting up with anymore nonsense such as clerical sexual abuse, yes, he announced this in the Dail.  Is it easy to forget?

but what he fails to recognise is a vast minority of his people, the Irish people are suffering severe abuse of a different kind.
FAR more are actually suffering... disadvantage, ill health, lack of care, lack of equality and a rather butchered, unequal approach to health.

a vast swathe of people do not get a health care package at all.
i mean nothing, bar the statutory, obligatory bits of caring which are so minimal it cannot sustain a healthy body, cannot sustain a healthy mindset, lifestyle and therefore leaves a person unequal, dis-empowered and out of the bracket of employment which seems to be the lynch pin to 'a modern society.'

if you have no health, you have no wealth.
the saying says so.

Ireland is brilliant at doing 'health forecast to achieve best practise.
we are brilliant on doing investigations, also brilliant in offering its people a vehicle to complain, especially about the services they receive.
we are very good at writing reports, reviews and criteria.

lets see where this all gets us.

the forecast for best practise for mental health for instance was drafted and drawn up well over a decade now yet its always has had the lowest budget.  alarm bells ringing after a year which saw this lowly budget absorbed into the general pot and left mental health again further diminished as a concept.
we had the result of a large proportion of the population needing mental health care like never before and a growing suicide rate, numbers being  unrepresentative of the real figures.
we have many more seriously ill people thrown out of institutions to fend for themselves in the community when the best practise was announced that this was the way to go.  NOT when you throw them out with no support it isn't and that never was the goal of 'Vision for Change.'
it stated that people should be in community, not in institutions, it didn't say 'throw them out and throw away the key' and have security men barring entry to the hospitals and care facilities, which is what has happened.  the most worrying effect of this document was that when the people were in the community there was no backup whatsoever if they got into trouble. people DIED because of this lack of foresight.

when things go wrong, we investigate.
how many investigations are ongoing at present, and at what cost?
why not disallow things to go wrong in the first place, which is achievable in many instances yet still the investigations do not bring change for the better nor bring a clarity of knowledge and foresight, vowing never to make the same mistakes again.
we are just good at it, the investigation bits.

we have a few vehicles which allow everyone the right to complain of poor services, no services and down right wicked practises and procedures.
where does that get us?
we know that more people are making complaints.
where do the stats go for these, they are not in the public domain.
nor are the results of the complaints, many go un-investigated and those who investigate are sometimes the boss of the department to which the worker belongs!
in once case i know of a HSE official investigated a complaint about a practise which she herself put in place so effectively she was investigating herself and the result of this investigation found the practise should not have happened which is incredibly bizarre by any one's standards, only in Ireland can we see this happen.

we see this happen because of enmeshment between departments, lack of transparency and a small country which doesn't seem to understand - you do not investigate yourself!

when Irish professionals write reports and do investigations the one thing that is on their mind is wait for it - repercussion - for themselves, as an organisation and i am specifically saying here Health for this is what i know about, but its probably the same for Dail Eireann and also any state or semi-state body (Irish water)s.

management -
we are out on our own in this department.
we wouldn't even know what that means if it was near  to and equated to a wet fish slapped across our laughing faces.

little things tell you we do not understand this, again in health for this is my experience official travels 40miles to sort the issue of a cushion for a wheelchair.
....the cushion is duly  delivered after a few visits, (only dealing with a cushion). call...what type of cushion did i give you.
answer:  it was standard.
response:  oh was it.

....the official drives 40miles to check.
response:  oh, yes, standard, you are right.

....sorting a bath chair for a disabled person. official drives 40miles to measure the bath.
...the official rings.
....i need to make a visit again to look at the bath.
...response:  oh, did you not look at the bath the last time?
...answer:  yes, but i forgot my measuring tape!

she had driven 40miles
she was to drive 40 miles back to her catchment area.
she then was to drive another 80 miles just to carry a measuring tape on her person and measure a bath.
result:  we can't sort that problem now.
meaning after the measuring! official arrives with a company supplier of a wheelchair.
...two vehicles, one containing the wheelchair.
...big smiles is your wheelchair
response:  is this temporary, i was told i was getting a temporary one.
answer:  oh, were you, we don't know anything about that.
man with the wheelchair, starts to bring wheelchair back to van carrier.
i get my laptop where it clearly says in an email from the Taoiseach's office, 'yes they say they will supply a temporary wheelchair.'
this didn't seem to ease their mind,
the wheelchair was taken away until the official could check on this.
...where is the (expensive) phone ffs.
exit man, official and my temporary chair.

its checked as correct, its to be temporary.
all come back.
next i have to sign for it.
question:  'will you be stating this is a temporary chair on this form.
answer:  'oh i cannot touch forms.'
answer from me:  (written)  Ann K accepts the temporary wheelchair handed to her today, signed.

its mind boggling crazy way to run a system.
that man in that van would have charged over 50e each way for the call out visit alone.

how many times was the old banger of a wheelchair repaired and how many times did a technician come to fix an 11yr old wheelchair.
well alot and i have just discovered his call out charge to the state is in fact 50e plus vat, and lunch!

when we then have an austerity problem, an over spending problem within the HSE and the community, the hospitals and far more besides, its the minutiae of absurdity that causes pain, distress to patients, that is the citizens who are sick, disabled, vulnerable, elderly and need care.

if we do not do this well, i contend we are an ignorant bunch who crass all over the land making nothing useful of professionalism we do not seem to have acquired in any school, university or philosophy of thought.

we just bang through walls of bureaucracy and crap efficiency.
its then becomes a cesspit, a hell hole of despair for everyone.
efficiency breeds contentment from all angles, not least for the professionals, if they were that.
all need to understand where they stand in order to be at ease and less chaotic.

when will we even begin to understand this concept.
no bull yowling at the Dail chambers that we are 'a modern society' will convince me of this fact.
i am living through ignorance my leader, utter ignorance.

Tuesday, October 14, 2014

Asperger syndrome, lonlieness and understanding

I was speaking to someone today about difference and perception of people and how people behave.
We have the ‘norms v. the ‘not-so-norms.’

This is an interesting concept,  ‘Difference’.

The word ‘neurotypicals’ is a word I also dislike intensely.
What is ‘A typical person?

I, personally,  am not typical we do know this.

I also knew this as a young child.
I was reminded every day, words screamed at me - ‘stop shouting’ ‘stop running’ ‘stop talking so much.’  ‘WOULD YOU BE QUIET’  ‘WOULD YOU BE STILL.’
 I could not and I still cannot and yes, I do know why, NOW!

Decades I have spent trying to be what others considered ‘normal’ and join the conformed world of ‘neurotypicals.’
Difference made me very depressed and trying to be something I could never be also made me very depressed and very anxious indeed.
I tried.
I failed.
I lived a life of misery – decades of it, because of the effort and the abandonment of my effort as well, the more I failed the more I withdrew.

My difference wasn’t the difference others thought it to be.
I was not a mental head case, which has stuck and there isn’t much I can do about this, although I wish I could try  but that is way beyond my powers.  I doubt I would succeed because it does suit people to believe this.

I have asperger syndrome.
It is interesting to note that this syndrome has now been merged back in with the term Autism, when once it was separate and that according to the mental health experts in the USA.
I believe this is so to make it possible to drug people if they are not conforming and so the weightier label of Autism is a one-stop shop for the ‘stop that’ pill.

So in all the years I tried hard to be like everyone else, I failed.
In all the years I was something defined by medicine, I was defined by many others as something entirely different and I doubt I will make any headway in redefining it back to either a norm or indeed to what it should be as is now known, Asperger Syndrome.
By someone else I have been redefined as Autistic and there is nothing I can do, even though there is a vast swathe of people stating that psychiatrist re-definition is the wrong one, as Asperger syndrome is not actually Autism.
Its Asperger syndrome.

Lets look again at how hard I tried to belong and join a world I didn’t understand due to Asperger syndrome.
Let us look at how people who are termed ‘neurotypical’ are trying to help autistic children, mainly and asperger symdrome children to join the world and integrate and be  part of the world.
They, the neurotypicals, have started ‘Assistance dogs for Autism’, in this country that costs 47k a year to train a dog up for one person alone.
They also have associations and groups and parenting groups and problem solving groups and facebook pages and all for the aim of improving the lives of those with autism etc.
Their main way of doing this is through teaching children how to behave, in effect the ‘normal’ way.  How to relate, the normal way.  A simple way of saying this is the ‘dummies guide’ to The 100 best tips to be ‘normal.’

 This is all done ‘at’ the child, ‘to’ the child and ‘for’ the child.

What is Asperger Syndrome?

It is in a nutshell a difference in ways of communication that are different to the vast majority of the population, and the vast majority have decided that we, are actually defective because we do not relate, er ‘normally.’

The ‘normals’ are attempting to bend, teach, train and bend again the ways, which are normal for the minority to the ways that are considered normal for the majority and foist these ways on the minority.

Communication my friend is between one group of people and another group of people and its called communicating.  It’s a process and is also pro-active and shared, its not active for one and passive for another.

Asperger Syndrome people tend to be a lonely bunch simply because they are in effect, different and communicate differently.
What normal people (they consider themselves normal) do not realize that whilst they spend most of their energies working hard and hell bent to bend, asperger people to be what they cannot be, ‘normal,’ they spend little or no time at all learning or bending themselves, to related as in relate with knowledge and in an active way to the other.

 The aspie is working hard to be ‘normal,’ as from the age now of about three it will be noted that they are not normal so the mind bending begins early so too does the notion within that child of ‘difference.’  The child cannot help but understand this concept, for they now have a dog beside them with a coat on emblazed with an emblem for the condition of Autism and also  Assistive Dog for the person who is hanging on to it!

Can it not be a two way process, all this hard work for the asperger person, all this learning, bending and learning again?
Why can the ‘normals’ or ‘neurotypicals’ not join the minority groups?
Can they not meet in the middle and attempt that social dialogue with a large degree of acceptance of difference rather than changing everything there is about a lonely asperger child or adult.
Can they actually attempt ‘friendship’ with an asperger child or adult and attempt to understand the difference rather than changing it outright and from conception to ‘forever amen?’
Why not?
No one said that asperger people are not as interesting, if not in many ways more interesting!
No one said that asperger people do not want friendships, they very much do
No one actually said they cannot be a good friend, cannot relate because they can and do, but they do it differently.

Why do the neurotypicals not try to retrain themselves to be less majority and more minority, in thinking?  The two can meet somewhere in the middle and less of Difference is noted.

Aspies like normals, do like to withdraw into their own quietness and peacefulness.
No one is denying that for the neurotypicals, like most humans we all need to know when to release another to their own space and peace.

But I see all this enlightenment to ‘change’ and in understanding, very much one sided.

Like everything that is health or personality related, we see now a pathologizing of ‘difference’ even by splitting the definitions that high functioning asperger people are in fact now high functioning autistic people, this isn’t quite exact but only surmising and in doing so draws more into the net of psychopathology.
 Definitions of norm are ever decreasing and I see a day the majority of people now normal will be the minority of to day, defective.
Imagine this, weeping at a funeral now is to be given a medical term and it is being considered to consider it a pathological manifestation!

Sunday, October 12, 2014

about having a chronic illness

oh Ann! you look really well...I am very sick.
oh Ann! You are walking........ I am still very ill.
Oh Ann!  why can't you? ........I am too sick.
Oh Ann!, Oh Ann!...................  you were ok yesterday.

the trouble with being so ill, its not visible.
I do not exactly wear it on my face, in my dress, or actually on any part of my body.

You will see me looking as people call 'normal.'
You may see me in a wheelchair, you may see me then stand up, or walk, and say...she walks!

You may also see her lying sick as a parrot for hours on her swingseat in the garden.

what you do not see is Ann weeping with depression because she feels so awful.
you will not see her go to bed, fearing the fact she cannot breath properly.
you will not see her waking, her gasping as her head spins badly and needs to get up for food and liquid because her disease demands she has these and all she can feel is her head screaming and her head spinning so she must rise and drink plenty, she cannot rest on.
you will not see her as she tries to physically get out of bed and scream with pain, in her joints, in her feet.
you will not see her as she steadies to stand, being fixed to a spot in agony before she takes that first step forward, stiff as a board, in pain.
you will not see those eyes, dry as a crisp leaf in autumn and sticky tacky with not enough moisture.
you will never see her feel so shattered even after a nights sleep so so tired all the time.
the feet buzzing in pain, or tingling or numb or burning or on fire.
you wont feel or see the skin creeping as even finger touches finger sometimes causes far too much pain.
how she doesnt sleep with jammies anymore.
how sometimes she needs a bed cradle to prevent the clothes touching her.

these are all the signs of a woman with a neurodegenerative disorder.
her muscles are wasting and dying.
her immune system doesnt function so all that is going too.
her brain functioning is going down.
she is living in constant chronic pain, no matter what medication she takes.
she spins from exhaustion if she has done too much talking or even sitting and typing.
she lives like a zombie with not a lot of support.

she is treated as if she was 'normal' as if nothing was wrong and almost as if she is faking it.

she also has asperger syndrome, which she herself is very aware of and yet so late in life has never really learnt that many skills to deal with this.
she also knows that maybe only maybe if seen sooner there would or could have been a way out and over her chronic inability to be part of a functioning world, she sees and experiences but cannot touch.

remember when you next see me and say 'Oh Ann, you look so well.'
Look with your imagination to the call of morning, waking, trying to get out of bed, standing, screaming, moving, and attempting to embrace another day, with profound exhaustion.

no cure and no treatment for Mitochondrial disease.
just looking normal is what you will see, feeling ghastly is how i feel.