IN THIS BLIGHTED HOUSE: A new blog to describe my return to Ireland. how I feel in this 'blighted house', the land of my birth. it will discuss all the GOOD this land has to offer, yet show the 'blights' that mar the scenes. I live and long...for a land of beauty in the people, in the politics, in the health of this nation. It can be found...but there is 'cost' and is the 'cost' too much to bear...
Thursday, May 12, 2016
Tuesday, May 10, 2016
RARE and ignored in ireland
What's it like to live 'rare' in Ireland? Living RARE is a term used by those of us living with a rare disease, or a disease no doctor understand but knows exists.
There is an organisation entitled 'syndrome without a name': SWAN. It supports hundreds clearly sick or disabled by objective testing but no one know what or why of that disease process. Living RARE is a nightmare.
Being a SWAN is a nightmare.
Your doctor hasn't a clue what to say, how to help, or in some cases accuses you of making it up, or being 'soma form' ( psychiatrically ill).
In my case there are, mercifully, tests results that prove a disease process. I do have parkinsonism, I do have muscle myopathy, I do have dystonia, and I do have a metabolic disorder. But unlike sums that add up to give you a correct total, here there is no total. Adding it up leaves nada under the line!
Living RARE is utterly lonely. Utterly isolating. Utterly frightening.
Your brain is constantly trying to understand, trying to figure out something that is happening in your body. It's exhausting.
Why is my foot turning in?
Why can I not walk?
Why are my muscles dying?
Why do I shake?
Why do my bowels not work?
Why am I incontinent ( intermittent)
Why do I vomit?
Why do I sometimes feel like I'm going to die?
Why is my blood pressure all over the shop?
Why is my sight going?
Why , why, why...drives me nuts in frustration. I want to know. Oh yes, I want to know.
The docs can say your muscles are deteriorating , they can say your brain is buggered, aka disintegrating, they can say, you don't make energy for cells to work...but no-one can say why. No-one can tell me the mechanism of my disease.
They tell me I have mitochondrial disease. This is an umbrella term for a range of mitochondrial disorders. Such as...
Leigh
LHON
MIDD
MELAS
NARP
MERRFF
CPEEO
PEARSON SYNDROME
KEARNS SAYRE SYNDROME
MNGIE
SENGERS SYNDROME
EGDEL SYNDROME
all mito disease. There are more. But though I have the symptoms of some of these conditions, my
cluster of symptoms, or phenotype in medical speak....is not recognised, known, seen before!
I'm living with a beast on my back that no one recognises!
Meanwhile those around you think you are making it up, because you cannot name it, and have never heard of mitochondrial disorders.
I don't like being RARE, I don't like being a SWAN.
I long for the day a doctor will tell me...we know what's going wrong. We know why this is all happening. We have a name for it. We KNOW NOW!
There won't be a cure. There are no cures for mito. You slowly, or not so slowly...edge towards that ultimate end, slowly or not so slowly disintegrating.
But as the saying goes..."Better the devil you know, than the devil you don't"
Until that day of 'knowing' I'll fight to get the answers and no doctor can tell me 'don't focus on finding the 'why', the 'what', focus on the symptom and how to live with it. Er ....NO....( well yes, too) but NO ...I'm focusing on identifying the devil.....for I'm simply not good with a RARE on my back .
No good at all.
There is an organisation entitled 'syndrome without a name': SWAN. It supports hundreds clearly sick or disabled by objective testing but no one know what or why of that disease process. Living RARE is a nightmare.
Being a SWAN is a nightmare.
Your doctor hasn't a clue what to say, how to help, or in some cases accuses you of making it up, or being 'soma form' ( psychiatrically ill).
In my case there are, mercifully, tests results that prove a disease process. I do have parkinsonism, I do have muscle myopathy, I do have dystonia, and I do have a metabolic disorder. But unlike sums that add up to give you a correct total, here there is no total. Adding it up leaves nada under the line!
Living RARE is utterly lonely. Utterly isolating. Utterly frightening.
Your brain is constantly trying to understand, trying to figure out something that is happening in your body. It's exhausting.
Why is my foot turning in?
Why can I not walk?
Why are my muscles dying?
Why do I shake?
Why do my bowels not work?
Why am I incontinent ( intermittent)
Why do I vomit?
Why do I sometimes feel like I'm going to die?
Why is my blood pressure all over the shop?
Why is my sight going?
Why , why, why...drives me nuts in frustration. I want to know. Oh yes, I want to know.
The docs can say your muscles are deteriorating , they can say your brain is buggered, aka disintegrating, they can say, you don't make energy for cells to work...but no-one can say why. No-one can tell me the mechanism of my disease.
They tell me I have mitochondrial disease. This is an umbrella term for a range of mitochondrial disorders. Such as...
Leigh
LHON
MIDD
MELAS
NARP
MERRFF
CPEEO
PEARSON SYNDROME
KEARNS SAYRE SYNDROME
MNGIE
SENGERS SYNDROME
EGDEL SYNDROME
all mito disease. There are more. But though I have the symptoms of some of these conditions, my
cluster of symptoms, or phenotype in medical speak....is not recognised, known, seen before!
I'm living with a beast on my back that no one recognises!
Meanwhile those around you think you are making it up, because you cannot name it, and have never heard of mitochondrial disorders.
I don't like being RARE, I don't like being a SWAN.
I long for the day a doctor will tell me...we know what's going wrong. We know why this is all happening. We have a name for it. We KNOW NOW!
There won't be a cure. There are no cures for mito. You slowly, or not so slowly...edge towards that ultimate end, slowly or not so slowly disintegrating.
But as the saying goes..."Better the devil you know, than the devil you don't"
Until that day of 'knowing' I'll fight to get the answers and no doctor can tell me 'don't focus on finding the 'why', the 'what', focus on the symptom and how to live with it. Er ....NO....( well yes, too) but NO ...I'm focusing on identifying the devil.....for I'm simply not good with a RARE on my back .
No good at all.
Wednesday, May 4, 2016
'Austerity ' creating abusive professionals
I went into social work because I CARED. I knew people suffered, I didn't like suffering, I didn't like the hurt people felt. I wanted them to know justice, love, care. Of course it was mega transference. I never knew love growing up. It hurt. But inside I learned there must be healing. I hoped my work showed that love.
I am grateful my period as a social worker was in a different time. I barely had any conscious knowledge of budgets or constraints on what I could do. I never reached the manager level. Thank god. I went from senior to lecturer. In lecturing I never had to teach staff to work towards budgets!
We had a job to do and we were going to do it because we CARED.
I am appalled at where professionals are 'at' these days. Little more than social 'bankers', or worse, 'money lenders'.
The 'social banker' is the manager. Restricting 'care' because care costs. He / she is NOT concerned about social care, no, they are more concerned with their 'bank' and lie about, manipulate and reconstruct the client in order to save 'the bank'. It is power and it's political.
Thus the costly client is no more vulnerable, but aggressive. No more needy, but demanding, no more suffering, but exaggerating.
What's so pernicious is that complaint about the 'care' received is reconfigured by the 'social banker'...'we have given this client highly skilled professional care', which is never truly defined.
And when the client does define what passes as 'highly skilled professional care', well the Emperor
(banker) has no clothes'. nakedness revealed, maligns the client.
The 'rePositioning' of client as malicious, devious, coercive, aggressive...all saves money, saves 'face', re clothes the Emperor. The 'social banker' is good at their job.
So who is the social 'money lender'? These are professionals who give but want interest back. The professional who demand gratitude, demand thanks, demand nothing but the grovelling client, created as ego builders for the 'social money lenders'. Anything less the professional destroys. For that professional power is needed by the social money lender who cannot function without it. The client, in debt, is a client powerless. And an ego protected from guilt, and shame for what they do.
I am appalled at how some professionals simply have no 'vocation', lost that inner guiding force of love. They have been 'bought' by the greatest 'banker'. The political leaders(s).
Do they truly believe they give the best to the client?
Have they been brainwashed.
How could they BELIEVE what they dare write or say?
How can they blame the client socially, emotionally, economically, medically, 'hungry', seeking help, and give
scraps, not a meal?
What has happened to professionals who give half a service or none yet justify it?
The OT not willing to challenge the crap wheelchairs they are asked to deliver to sick, disabled clients?
How can the social worker 'assess' the client as not needing a social worker full knowing the post is vacant and embargoed by the banker?
How can the podiatrist source cheep alleged 'orthopaedic ' shoes from china and argue they are 'good'!
How can the 'social banker' believe that saving money...is their vocation. Even if it strips the vulnerable to their very souls?
Each and every professional plays the austerity 'game', because they need their job and clients are 'sacrificed' on the altar of austerity so that they can keep their jobs.
They've lost that thing in MY soul when I cared for clients. It was called love.
And LOVE does not allow austerity. Rebels and fights austerity. It is LOVE that ignited MY professional soul....oh I'm so proud that I LOVED. and I DID LOVE...deeply.
I am grateful my period as a social worker was in a different time. I barely had any conscious knowledge of budgets or constraints on what I could do. I never reached the manager level. Thank god. I went from senior to lecturer. In lecturing I never had to teach staff to work towards budgets!
We had a job to do and we were going to do it because we CARED.
I am appalled at where professionals are 'at' these days. Little more than social 'bankers', or worse, 'money lenders'.
The 'social banker' is the manager. Restricting 'care' because care costs. He / she is NOT concerned about social care, no, they are more concerned with their 'bank' and lie about, manipulate and reconstruct the client in order to save 'the bank'. It is power and it's political.
Thus the costly client is no more vulnerable, but aggressive. No more needy, but demanding, no more suffering, but exaggerating.
What's so pernicious is that complaint about the 'care' received is reconfigured by the 'social banker'...'we have given this client highly skilled professional care', which is never truly defined.
And when the client does define what passes as 'highly skilled professional care', well the Emperor
(banker) has no clothes'. nakedness revealed, maligns the client.
The 'rePositioning' of client as malicious, devious, coercive, aggressive...all saves money, saves 'face', re clothes the Emperor. The 'social banker' is good at their job.
So who is the social 'money lender'? These are professionals who give but want interest back. The professional who demand gratitude, demand thanks, demand nothing but the grovelling client, created as ego builders for the 'social money lenders'. Anything less the professional destroys. For that professional power is needed by the social money lender who cannot function without it. The client, in debt, is a client powerless. And an ego protected from guilt, and shame for what they do.
I am appalled at how some professionals simply have no 'vocation', lost that inner guiding force of love. They have been 'bought' by the greatest 'banker'. The political leaders(s).
Do they truly believe they give the best to the client?
Have they been brainwashed.
How could they BELIEVE what they dare write or say?
How can they blame the client socially, emotionally, economically, medically, 'hungry', seeking help, and give
scraps, not a meal?
What has happened to professionals who give half a service or none yet justify it?
The OT not willing to challenge the crap wheelchairs they are asked to deliver to sick, disabled clients?
How can the social worker 'assess' the client as not needing a social worker full knowing the post is vacant and embargoed by the banker?
How can the podiatrist source cheep alleged 'orthopaedic ' shoes from china and argue they are 'good'!
How can the 'social banker' believe that saving money...is their vocation. Even if it strips the vulnerable to their very souls?
Each and every professional plays the austerity 'game', because they need their job and clients are 'sacrificed' on the altar of austerity so that they can keep their jobs.
They've lost that thing in MY soul when I cared for clients. It was called love.
And LOVE does not allow austerity. Rebels and fights austerity. It is LOVE that ignited MY professional soul....oh I'm so proud that I LOVED. and I DID LOVE...deeply.
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