Tuesday, August 13, 2013

disability is a stat and a pop up!

Living in Ireland...... After the Crash......

living with Mitochondrial disease

 Bashing up disabled people and considering us a drain to society is not compatible with the idea of ‘society’ in the first place.

myself and my dear twin sister 'dr. raging wheels.' 

Many government ministers are well aware that if you put us up against a wall and shoot us it will leave thousands unemployed.

If you shoot also the many in social housing as people who are eating into the economic pot you also are losing many civil servants.

To get rid of us is not that easy.
For we pop up again and again thoughout the three score year and ten.

We are the daughters of a loving father and mother.
The sisters of a group of children who are being brought up and edcuated to be part of a society of caring.
We also may be the husbands or wives of those who are doing good to the society already and may in fact have created little children who in turn will create more for the exchequer once their time in the educational system is done.

If you selectively do away with us you are then depriving those who are healthy without food on the table.

For you have effectively decommissioned the professional who grew in education, status and skill to provide for us.
We are talking about the Occupational Therapists, the Physiotherapist, Orthotists, the psychologists and also Social workers and the Social Service system manned by many thousand of civil servants.

The ripple effect is known and there to be seen and is realised that disabled people actually keep the rest of a good proportion of society in food and nourishment.

What the cuts are doing to me on a personal level

There is only one way to explain the benefits we offer the healthy by describing only part of my living but in turn we deserve more than hatred and grief.
 I awaken each morning after usually a ghastly
                  night of pain and discomfort.
actually i still have no summer shoes! 
August 2013!

I ache all over, my eyes and mouth are dry as paper.
My limbs are stiff and weighty and my joints do not work.
There are few teeth left in my mouth and my two hearing aids are on the table before me.
My spectacles are waiting for me to see what time, this time i am either fortunate to be alive or less fortunate.  Its a matter of perception and belief in the idea of living.

           I believe in living – with a vengeance.

 Sarah Henderson bringing her whippets to see me and i speak with dystonic posturing.
The immediate problems for me are –activate, medicate, work on the body that now has awoken in pain to pretend to do the Art of Living.
Stretching and loosening up alone is the hardest part.
Putting in the aids then is about the least stressful, if you do not have an ear infection and i get many of these.  They would not be the most efficient on the market and in fact they dont make it that much difference to me.  I have lost 70% of my hearing capacity.  They amplify yes, but they are not fine tuned as the more expensive models would be.
I have though extreme problems with otitis media.

I step outside the confines of warmth and stretch out hands for the shoes.
These, now in summer are summer shoes.
My feet are deformed from birth and the lower legs are showing signs of quite severe muscle wastage.  I have shortened achilles tendon and one foot is a good size bigger than the other.  I also have one leg shorter than the other.
The shoes are about as important as they get.

All people walk and walking is an act which is amazing, it separates us from the ape and chimp who still depend on the top arms to manover.
But walking upright means that weight of the whole body is put on the wee end feet.

It is no mean feat.
If the shoes for a deformity of the feet are not the best we can manage now with our sophisticated society and science then the body in turn is ruined.
It is ruined irreparibly.
My shoes were denied me after 2008.
So i have been trying to make do with shoes now that are floppy, with holes in the soles and with soles that decide they wish to depart from the life and job it has been given.
They too are flapping.

They will get stuck down this day instantly.

Teeth will be put in but with the economic cuts they are loosened and so i have to wait until the dental hospital has funding to reline my dentures and allow me eat decently without struggle.
I do have sjogrens syndrome which means my saliva glands are dying.
If i do not do the chomping well i can choke to death.
The teeth are more than that, they control how the food is administered to the stomach.
I have nearly choked a few times now.

I will then walk, i am in so much pain...the achilles now are so damaged from lack of support that they cannot be repaired at this stage.
They are only being attended to now after eighteen months of begging for treatment and longer for shoes that will cope with the feet deformities.
The amount of phone calls, begging letters and tears not to mention the amount of times health officials and the company involved have put the phone down on me would take up a complete shelf on some HSE office

I will also need that injection.  Crohns disease has lopped out my ileum where vit b12 is absorbed.
So this now has to be administered by the district nurse.
There was a fight for a while to do this myself as i was getting badly administered jabs.
But then i was told the gp would do it, but the gp told me he would not.
So i get them by the nurse.  Some jabs are better than others, it all depends on their mood.

An appointment at the doctor will tell me there is no:
Gluten free food products now on the medical card prescription.
There are no vitamin products either for boosting my energy because
He cannot effect change for the fact the cut backs have meant that i have had no physiotherapy since January.
I have dystonia and muscle wasting and a bent spinal column with crumbling discs in the neck and other problems that only physiotherapy can ease.
I am on morphine so badly need this work on the muscles.
He cannot effect change to bring forward any appointments and being on lists somewhere.  i have a echocardiagram in February 2014, so i hope that i will not have a heart attack before this.
He cannot get me Respite after such a huge  move for two very ill people who did a move out of the county all because of bad administration of housing stock for a lady who has spent all her days in social housing.
We had to shift to safety which has led to PTSD and its not pleasant at all to feel so adrift, but then is it pleasant to be taunted and have a child shoot at you?
It isnt.
So we now feel like war victims.

I struggle and fight to retain a clapped out wheelchair which the HSE in their wisdom say gave  to me by mistake!
So fearful i will be left with nothing i use a machine that has already lost a wheel in action putting me into a wall!
I have lost bits off it and also the control knob when i was taking this out of an adapted van yesterday.

It doesnt end with the wheelchair.
In order to live in this country you will at some point alienate yourself with a large group of care givers.
The HSE who in turn will call you a pathological individual for which they have workshops to learn how to deal with a so called ‘atypical behaviour’
I have to remind the HSE, its probably very typical after what they put us through.

The waiting lists are long.
I have it for
Hearing aid
And the fight is mighty.
And so much more.

The waiting for emg, echocardiagram and other is even worse.
The doctor will only do bloods once in a blue moon and protest over doing other types of testing.

We have a system which is taking from us at the bottom and yet doing nothing to put good management at the top.
Another factor of huge note here -i may add- they are too keen in fact to tell you what to do with your own property, as they nearly forced me to have a wetroom for a bathroom in my own private home.

This is the Bath i managed to save! YIPPEEEE!

(I am still looking into the legality of that!)  the HSE are now taking over your life and saying how you live it, demand how you live it.
Even if you protest.
Like how you want your home to look, how you want to use your home as a creative individual and in severe pain, removing everything for the hole in the ground, prematurely is wrong.
Doing so against the owners wishes is also wrong.
She has a mind to decision making and she has made it future planning decisions!
The HSE is not in charge here, I am.

Of my home.

So you are spending all your days phoning up the various departments, getting td’s on your side and not having a life at all at all.

I hate it.
I dont know how i can change the fight.
Change it to peace and quite and purposeful engagement as once before.
Instead of being something pathological for the HSE.
But that i am.

This is an open decree to both the government and the general population.
I am disabled and also disabled by birth as well.
But i am my fathers beloved child, as is my twin sister.
But i could also be the Taoiseach’s child and the minister for Health, who has a grown up man working purposefully with a challenging condition, as a doctor’s son he would have got the help he so needed.

Not so myself and twin who have no one.
Except our wit, mind and pink bowler hats.

If you take all the professionals away from living purposefully and all the disabled people who are living according to yourselves a ‘wasted life’ then society is gone, caput.
We will have no variety.
No choice
No dynamic population.
We may have a country full of IT specialists only.
And banks for the bit of exchange.

What will happen if the banker gets sick or his son does
What will happen if the IT worker is sick and has a family with an out of work social worker for a wife?

What do you do then?
Do you get the gun?

When i weep over the pain of the achilles and the lack of support and weep over the harassment by the HSE taking a wheelchair back.
I ask society and the top thinkers and officials.
“What on earth did i do to deserve grovelling to such an extent?”
Surely to god its written in the constitution that i have my right to life.
Not right to the breath i take without the life i can have, that is.

When you try saving yourselves you are in fact killing yourselves.
Because when you have finished at the bottom then you have to start working upwards because cutting back is not going to impinge on deficit.
Working is, and the creation of jobs is.
Not telling people they cannot work in this country because they are cutting back on provision of care.

In real terms – you are shooting yourself in the foot.
It will Hurt, rest assured, it will hurt horribly.
I know.
When i am gone, one more disabled child will pop up in Ireland, statistically this is so!  You have not got rid of a preceived problem, but created more instead.

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