‘Troika imposed austerity cuts may damage your health’ – Nessa Childers MEP » Latest News » Nessa Childers MEP - a strong voice for Leinster

‘Troika imposed austerity cuts may damage your health’ – Nessa Childers MEP » Latest News » Nessa Childers MEP - a strong voice for Leinster

This is what I mean by 'this blighted house'.  How are those of us needing intensive health care going to fare?

We will die and no-one will ask the questions...because our death will seem like 'normal' given our illness or disability or age related.

This is the scandal.

Death of a Sister

No...it doesn't get easier...despite the passage of years...16 now.   This day my sister went for her morning swim at Marian's swimming pool Dublin.  At 48 years old, a former International swimmer she still competed in Masters swim meets.  She loved swimming and that morning made everyone in the pool stop to look at the morning sunshine as the sun rose.

I lived in England.  I had a call from my oldest sister that Louise was unwell.  I said "I'll phone her"...I never did.  It just went clean out of my mind and well...I had no idea this was going to be her last day on earth.  'unwell' can mean anything...can't it? It's my saddest regret.

But she grew very unwell as the day passed and a neighbour called an ambulance.  in the local hospital, and believe me it WAS a 'local' hospital, not one of the bigger Dublin hospitals, they could not figure out what the hell was going on.  Her bloods were haywire, she herself was 'haywire'. Thrashing and frightened.  'Don't let me die' she appealed, to her brother-in-law she said in the lift to intensive care, together with Ann , my twin, "Brian, you'll make sure they'll look after me", "yes, Louise, of course"... within the hour...she was dead. Sadly now, so too is my dear Brother-in-law. In both cases.  Nothing could be done.

Louise died of a rare rupture of a rare adrenal tumour. a 'silent' nasty. She did not know she had. In rupturing adrenaline, nor-adrenaline and cortisone flooded her system, speeding up her heart and no way of controlling the huge amounts of these hormones which filled her veins and destroyed her heart and life.

and as she died I was having a meal with a friend, laughing, joking, enjoying myself.  I arrived home to the phone ringing...9pm.  I dashed to get it before it stopped. Louise had 'passed on', said my niece.  I could not understand this, "what, what"....'Louise had died'. In fact I knew the minute before as Ann my twin said "hang on Margaret I'll give you to Katie, someone is coming to speak to us..." then I heard an almighty scream.  Ann, collapsing in anguish.

Since that day, I've missed her, loved her and thought about her.  That sister, who was so misunderstood, so unknowable, so secret in her living. That when she died, I had no idea who she REALLY was. Who were her friends?  What did she do/ who did she love/ who did she hate/  who was Louise.

But never mind...there was one thing I knew, I knew her heart, I knew she loved her parents. I knew she was a wounded soul.  I knew she loved teaching, I knew she loved disabled children....I knew a lot.  But I never talked with her, not really...so now I mourn still, because I never really 'connected', and I miss that.  But I loved her.  I miss her and I wish she was hear still.

And today...I will remember her.  That lost soul...who could not 'connect'... but hurt and tried.

Cyber-bullying & proud to be a disabled woman.

I have never experienced 'cyber-bullies' until this past weekend.  There can only be one 'blessing' out of it!  I now know exactly what teenagers feel when they are 'cyber-bullied'.  It is horrendous.  Largely because a) it's put on an open site where hundreds can read it b) you don't know the cyber bully c) it's usually vile and scurrilous .  So what happened?

Well I thought I was just arranging a fun Christmas 'do' to gather together likeminded folk to create a small energetic group of non-disabled people with disabled people to find a creative way of having an 'inclusive community'. Having experienced great loneliness in Greystones, my new home, and finding getting around difficult due to geography of Greystones and wheelchair use, and potholes and suchlike, I invited county councillors to consider getting around in a wheelchair. We did a 'walk-a-bout' and  the mayor came to see and it was hugely successful. Then we had a meeting and a little fledgling group started. it's exciting...yes, it's exciting.

I was chuffed. But now it's gone sour in Greystones. I decided to have a Christmas Cake Competition, with prizes and then raffling of cakes and other prizes to raise funds for the group 'DAG:T' 'Disability Action Greystones:Together'. So I did well gathering prizes and excitedly posted this on a Greystones facebook forum...but then female DISABLED 'cyber-bully' launched in.

'Just because you are in a wheelchair...' 'sympathy getting prizes from businesses fraudulently..' 'you piss me off', 'I am not defined by my disability...' etc. etc...   Well, to say I was floored is putting it mildly.  I was not well with tonsillitis over weekend, still have it...with temperature.  It really, really crushed me.  I sobbed for days...but that was her intention.

But now I find she isn't the only Greystones 'bully'.  My neighbour said she overheard school mums discussing 'the twins...not as disabled as they make out' (my twin has same disease as I have), this because sometimes we use wheelchairs, sometimes we walk.  so this obviously means we are not genuine 'disabled twins'.  more upset, more sobbing...

in actual fact even my own older sibling says this with venom. she hates my 'up-front-ness'. So ignorance knows no bounds.

I have simply NOT experienced disability bullying at all.  And it's hard to be ill and using a wheelchair without this shit.

so what's it all about?

firstly I think there is confusion over why some people 'part-time' use a wheelchair, and this is not well understood.  the common perception of 'disability' is you either use one or you don't. using one = disability, not using one = not disability. and I think this perception is enhanced by using the wheelchair logo to denote 'disability' when actually that's only one disability. there are many more. including hidden illnesses like I have.

and the wheelchair symbol says you are disabled if you use a wheelchair, thus implying, you are not if you walk...and people love simplicity.  they don't have to think.

So part-time users of wheelchairs are not well understood.  The reality is, I have muscle myopathy, I cannot stand for any length of time, nor walk very far.  I am exhausted most of the time since my disease 'mitochondrial disorder' means the mitochondria which converts food and oxygen into energy for cells to function is dying. we have mitochondria in EVERY cell in the body.  it's like an energy battery and well I don't have the batteries any more. For myself & twin the mito affected are those dealing with brain and muscles.  Some people have mito affected heart and lungs. but actually mitochondrial disease affects every organ in the body...except blood.

So it's not I can't walk, I can, but not for long and some days are worse than others. so yes, you will see me getting out of the car, going into a shop sometimes and sometimes I'm in the wheelchair. sometimes being in a wheelchair is determined by one practical consideration...a taxi that can take a powered wheelchair.  in my area of Greystones there is only two  and a special company easi-cabs (could be called 'fab-cabs'), but this is a very busy company and you have to book in advance.

my disabled cyber-bully obviously doesn't like how 'up-front' I am about my disability. I shouldn't publically discuss it, shouldn't publically 'flaunt it' she might say...well, all I can say to that is, we all deal with our restrictions differently.

I see no shame in saying I am disabled which means I shake (Parkinsonism), I have dystonia and my back and foot and hand twists and twists  into spasmodic , interesting, contortions, my muscles are degenerating ...like muscular dystrophy, indeed myopathy is like muscular dystrophy, I am in pain from severe degeneration of my spine, spinal arthritis, and I am severely deaf. I take LOADS of pills!

I can wet the bed overnight, I miss the loo and flood my legs and bathroom floor, and no I don't like it, but I am NOT ashamed, nor am I willing to say I'm just like everyone else, I'm not. I'm not like my disabled cyber-bully who says nobly 'I don't let disability define me'.  I don't either, but sure as hell I am a disabled woman...and sure as hell...it's bloody difficult.

So sure as hell, I'm excited to work towards disabled people and non-disabled people coming together in Greystones, excited by the small bunch of good Greystones people meeting together, excited about the Christmas fund-raising and excited about the future and my chosen place of retirement...

yes, I am a disabled woman, living in Greystones...my twin is a disabled woman living in Greystones and only we, living with multiple illness and disability have the right to define ourselves.  and to boot...we are PROUD of still surviving, still here, still creating...

Proud to be a disabled woman. and no cyber-bullying, or negative gossip is going to shake me again.

You know why?    Because I am a DISABLED woman!

The Irish Budget robbed the elderly and the young.

The Irish Budget today had me depressed and feelings of 'hopelessness' swept over me.  Not because I'm going to be in the gutter, but the hardships increase like a horrible water torture of drip, drip, drip on your forehead.

To see the cuts on all things to do with the elderly makes me realise how the elderly are really not wanted, valued or nurtured.

35,000 over 70's will have their medical card swiped from them, that card will be given to some rich kid under 5. No doubt about it, in order to fund the under 5's medical card the elderly have been robbed.

Single parents too are hurt.

divorced or separated parents are hurt.

Disabled people and ill people will pay more for their drugs. an extra 1euro per prescription is a lot when you might be taking anything from 5-15 different drugs. so the sicker you are the more expensive it will be.

and if they switch your brand name drug to a 'generic' likelihood is it won't be the same and your health will be robbed.

So 'robbed' is my word for today.

Pensioners over 70 will have their income threshold cut for medical cards

Their telephone allowance is cut so those using alarm systems may be severely impacted.

bereavement grants are gone.

Robbed...

There was no mention at all about the mobility grant equivalent promised to be delivered by October.

So they cut the mobility grant, and the motorised transport grant and there is no replacement.

robbed.

Certainly this government has asked (robbed) the young and the old to shore up this country...without any cuts to the rich who are continually protected.

There is little I can do...and that feeds my hopelessness

With the powerlessness of the past wrought by a Catholic hierarchy intend on making us sheep, the present government's power to make us feel helpless where can we turn?

There will be nothing but misery wrought on the Irish people by intransigent overseas powers and internal maliciousness of Government.

Will any government minister be worried how bills will be paid tomorrow, or whether they should go to bed at 4pm to keep warm and save heating costs to pay for the GP visit, or drugs needed?  No, every government minister, every person in that chamber this afternoon, will go home to a warm house, a good meal, a bottle of sherry, wine or champagne on the table...and they will settle down to the internal warmth that they allegedly 'saved the country' but killed its people.

nice work there.

in praise of my lovely 68 year old home help

One of 'the blighted houses' I speak of at the moment is, of course, this body of mine.  it creaks and groans and tells me oh so clearly it's got the 'blight'. Unlike a potato, I can't be thrown on a pyre to rid the curse.  No, that would no be a good idea!

So instead I have some 'little helpers'.  that is, home help and personal assistants. and a tired blighted body sure needs them.  very much so.

My home help was told if she didn't go on this course then she'd have to fund going on it in her own time.  That would be 4,000e.  "God I said, what sort of course is that".  Oh to help you understand 'the blights', bodies, people's needs, and how to support them through the blight and into the next world". 

Well she didn't actually put it quite that way...it was a course somewhat the opposite end-of-life- course to 'child development', more like 'geriatric development'. what she said was "why do I go on that course when I'm a housekeeper, cleaner".

She developed the theme..."I'm 68, I've been a home help for 30 years I'm a cleaner/housekeeper", and frankly that's all she wanted to be, and equally frankly, that's all I want her to be. But you see she's 68 and they want to create a 'professional' and she knows its a ploy to push her into retirement.

But she sees this as a 'nonsense' as I do. I don't want my home help to be a pseudo-counsellor-cum-geriatrician. I want...no need...her to clean my floors, my toilet, and peel my potato's and bring my bin down to the footpath on Thursdays. And happily that's what SHE wants to do and happily she's brilliant at this, more brilliant then the young 'uns who want a 'profession' in home help. who seem to think 'cleaning' is somehow beneath them and resent it.  This is fostered by the 'development of the home help profession' , which slowly and surely is 'killing off' our cleaners.

Home helps are no longer  'cleaners', they are more like 'tidy-uppers' .  except for my 68 year old...oh and a very good young 'un too, both expert CLEANERS.

'Tidy-uppers' straighten the bed, that does not necessarily mean MAKE the bed, they pick up things from the floor, or bring dirty washing from bedroom or bathroom and shove in washing machine, or stack the dishes in dishwasher.

They cannot (health & safety) move the sofa to brush or hoover underneath or behind.  They cannot move a bed, clean the top edge of the skirting board... the cannot clean the glass door into my kitchen where my dog likes do a  'paint by nose' masterpiece, a great picture of whatever comes out her nose!  the 'cannot clean', is not because of the 'nose stuff' danger but the glass danger.

on no account can a Home help wipe dog wee or poo from the floor, heavens no...health and safety.  but should the need arise she's trained to wipe my bum and clean my toilet.

the crises in our home help service here is that everyone has to feel 'fulfilled' and just  cleaning a sick or disabled woman or mans house seems less 'fulfilling' than going on a fancy course and calling yourself a 'carer'.

I want to scream from my roof top (where the Hitchcock crows gather nightly) "come back home help CLEANER, I love you".

The secret ingredient in food - love

Yesterday was a good day on my first 'step' to riding my 'body' house of FAT!  

A good healthy shop with my PA resulted in a hefty bill at checkout. You wonder then how poor people can really afford to buy healthy, so be healthy!  all very well Jamie Oliver saying it can be done...and showing us good nutritious meals...but the issues of healthy eating is strewn with road blocks.

Energy is required to shop, to prepare a meal, to eat it. And buying the stuff is just the first bit! Luckily last night my PA was with me from 4.15-6.15 so she did all that, except of course the eating!

energy and the will to tackle 'food'  when 'food' is no longer 'nice' or becomes a burden is a terrible struggle. That's why elderly people 'give up'.  And the 'meals on wheels' (MOW) I tell you is far from appetising. I've been there, done that...yuck!  Wonderful caring men and women, and no doubt many elderly people eat it because otherwise they know they'll starve!  But after a while, you just feel that you could not stomach another MOW.

But is it the food, or the lack of that secret ingredient.  its not the same as sitting at a table with friends or relatives digging in to home cooking, love, laughter and companionship.

So when elderly people fade before our eyes is it the food or the lack of love? and even the not so elderly...

There's no doubt about it, 'food' is a conundrum for sick, disabled, elderly people...I suspect largely because it is eaten ALONE!

'Food' was never meant to be so...it can only be 'digested' with love, companionship, and help to prepare it.

It can only do its job when the ingredients are in 'balance'. 

Last night this was the case.  today...not so...I can barely face it.