Somewhat Bitter

Dear Nurse O’Connor,

 

I am writing to you because you are my only point of contact. Please forgive the rambling, fragmentary nature of this missive.  As you know I have significant cognitive impairment and this is reflected in my communication style.

I would be grateful if you could pass it on to the relevant authorities and I will no longer attempt to contact you.  You have made your opinion of me quite plain.

 

Yesterday I received an in-home visit from Dr Simon Mitchell (consultant psychiatrist) and Ms Natalie Bo (some kind of social worker).  From the outset their contempt for me was palpable.  I would not expect any health care professional to like every patient they encounter.  My problem is when they make these feelings obvious and they permit this to affect their ability to act in a professional manner. Their attitude perplexed me because I have had very limited contact with them; a *single meeting* with Dr Mitchell (in which he apparently decided I required no more assistance from the CMHT); and a couple of brief telephone conversations with Ms Bo.

 

I was then informed that I was not a priority (even though people with severe and enduring illnesses are absolutely a self-declared priority.) and that my contact with your service would be reduced to seeing   Dr Mitchell every six months, which is extraordinary given the nature of both my illness and the medication I am obliged to take.  I might as well then be getting my medication from a vending machine.  It would probably have a better bedside manner.  In the past, I have had psychiatrists who have approached their patients in a more holistic manner, presumably because they recognise that no mental illnesses occur in a vacuum, detached completely from their social contexts.

Dr Mitchell clearly has a vastly different approach.

 

It was implied that I am somehow unworthy of treatment, that I was a waste of resources.  Need I remind you that I was taking up a whole two hours a month of your time.  Hardly breaking the bank. The manner in which this was delivered was hurtful, devoid of compassion or empathy.  When the meeting drew to a close I was obviously distraught but the pair left the flat with no attempt to address this. And even if it is a matter of resources then why am I specifically being singled out?

 

I would also like to know what process your team went through to arrive at this decision.  You informed me that you and Dr Mitchell arrived at this conclusion in a meeting but he denied all knowledge of this.

 

I was also told that I would henceforth be in the sole care of my GP. I pointed out that I have no working relationship with my GP’s surgery because I have been under the care of your team for until your abrupt & whimsical decision to abandon me at the beginning of the summer.  I have had no regular contact with my GP for five years.  And besides, they are not specialists, and many have limited experience with my complex needs.  This did not elicit a remotely satisfactory response.

 

I get the distinct impression that their treatment of me is being influenced by the personal grudge you seem to have against me.  I am being unjustly treated as a result.  This is not acceptable. Please be aware that  I fully intend to make a complaint and follow it through to its conclusion.

 

Yours Sincerely,

 

Insert Real Name

At An Impasse

I doubt anyone will read this but I want to make a record in case anything happens.  Desperate times call for desperate measures.

First some context. I suffer from a ‘severe and enduring mental illness’ called Schizoaffective Disorder. (I have no time to explain its symptoms here but ppl can google it.) If you don”t mind I will refer to myself in the third person. (It’s easier that way). She was neglected for years by the NHS and then in 2014 her father died and she spent nearly a year slipping in and out of a state of psychosis and extreme changes in mood.

Eventually her GP realised how much she had deteriorated and she was finally admitted to hospital and was at last given the treatment she so desperately needed. An apology was issued (her mother, who lives in another city, had spent the entire year phoning them, informing them of her deteriorating state of mind) and it was acknowledged in writing that ‘(I) do not think this (illness) has been adequately treated at any point in the recent past’. They were also informed that this would never be allowed to happen again.

But now it *is* happening again. In May of this year she was unceremoniously discharged from services, apparently because she had ‘failed to engage in interventions’. (Whatever that means) She was also told that it was a matter of resources, although this has since been denied. She was informed of this in a letter which basically said ’goodbye and good luck’. This decision had been partially made by a new consultant psychiatrist who had seen her a grand total of one time. There was no preparation made for this discharge, no referrals to other agencies that could help, just a letter. She was despatched into the care of her GP with whom she had not had a working relationship for five long years.

These are the facts:

The fact that someone likes being asleep more than they like being awake

The fact that they see their dreams, however horrific, as preferable to being awake

The fact that someone never leaves the house, not even to get food

The fact that someone self neglects to the point of not washing properly for weeks

The fact that medication has reduced efficacy & psychotic symptoms are returning

The fact that this person does not see a real life human being, apart from those who deliver her food, for months at a time.

The fact that she finds it impossible to interact with other members of her own species, even on line

All this time devoid of human companionship when it has been established that this degree of extreme isolation can affect long term cognitive function

The fact that as every day passes her chances of returning to a normal life and interacting productively with society are reduced.

The fact that this person no longer sees any point in life itself

The fact that as each day passes this person is deteriorating further

One would imagine that these ’facts’ would be a cause of grave concern for those who are responsible for this person’s care. But they are not. She telephones the duty team (as she has a right to do under Section 117) and is met with bewilderment (you can’t be that bad if you can eat), indifference, barely disguised contempt and even hostility. She gently suggests that maybe a brief spell in hospital would be sufficient to get her back on an even keel, even a slight increase in anti psychotic medication could help. This is what has happened in the past but she is informed that this ‘is not the the way things work any more’ and that to be hospitalised ‘one of us has to see you’ but they will not see her. And so we are at an impasse. And every day she loses touch with reality even more. She does not know how this will end.

The Chemical Lobotomy

 

When I was first hospitalized as a teenager, I was, or so I was told, very ill. I was experiencing delusions I would rather not discuss in any detail here. Suffice to say I was only ever a danger to myself, never to others. As a result of this, I was forced to spend six months in the local psychiatric hospital. I was heavily medicated with the most primitive antipsychotic known to man: Chlorpromazine (aka Largactil in the UK, Thorazine in the US and the Chemical Kosh/lobotomy in both countries).

Chlorpromazine was the first of a new type of medication known as ‘neuroleptics’. They were introduced in the 1950s and were the only class of medication capable of combatting the positive symptoms of schizophrenia such as delusions and hallucinations. They did not, as far as I am aware, do much for the negative symptoms.

I was reminded of this recently when I saw a documentary entitled ‘Inside Strangeways’ on Channel Five, a terrestrial tv station I rarely watch. In 1985 an infamous riot broke out in the prison. One of its triggering factors was the use of Chlorpromazine to subdue its more troublesome prisoners. They would be forcibly medicated; held down and injected. It is a horrific experience; something I have never really got over. Even though I now see that it was a tragic necessity, I still find it hard to dwell upon. The sense of violation never really goes away.

Throughout my first stay in the hospital, I was on such a high dose of Chlorpromazine that my vision was permanently clouded over. I needed Procyclidine (an anti-Parkinsonian drug) to combat the side effects of the drug I was already taking. Those were the days when the hospital staff would wake you up to give you a sleeping pill then wake you up periodically throughout the night by shining a torch into your bed space. But they were doing the best they could with minimal resources. I know that now but for a long time I resented it. Time does heal some things.

All of this happened in the early ‘90s and thankfully, over the years, much has changed. Atypical antipsychotics such as Quetiapine and Abilify have been introduced. Therapy is no longer contraindicated. People are prepared to actually talk to you nowadays. Medication is no longer the only avenue of treatment.

At the moment I am taking Quetiapine and Abilify. I am told I should be reconciled to the fact that I may have to take this combination of medications for the rest of my life. This does not sit well with me. I worry about the impact these drugs may be having on my physical health. Quetiapine has been known to indirectly lead to diabetes or liver damage. And. if you google it, you will find a list of side effects a mile long. The less serious side effects include dizziness, nausea, vomiting, drowsiness, constipation. The most serious side effects include high fever, confusion and permanent cognitive impairment (something I am terrified of.)

So I stand at a crossroads. I am tempted to simply stop taking the medication altogether so that I can be me again. But those around me say it is beneficial and I should continue taking it. I shall probably compromise and aim for the best possible results on the lowest dose of medication. This, I think, is the most sensible approach.

Myself: A Case Study

Myself: A Case Study:

This will be the bleakest blog entry for a while and for that I apologise. The breadcrumbs have been devoured by the birds and there is no way back. I have to create a new future for myself.  This is a kind of SOS.

This is actually about me but I am writing about myself in the third person. What shall I call myself today: Susan perhaps.

My diagnosis was, until recently schizoaffective disorder but the powers that be have chosen to change it to ‘schizophrenia’. Schizophrenia is a cruel disease. It attacks every aspect of your being and even after a successful medication regime has been established there are problems that may seem unsurmountable but they must be faced up to and overcome. At the moment I am experiencing residual symptoms of my disorder: loneliness, social isolation, suicidal thoughts, panic and anxiety. However, my greatest enemy is poverty of expectation in myself and in others. I find myself longing to give into the temptation to curl up into a ball and lie there forever, to succumb to a dreamless sleep.

Right now I am terrified of the future. I have a tendency to catastrophise. I am finding the world almost impossible to navigate. I am nothing, I am passive, a mere observer. I am characterless, A tabla rasa. My self esteem has been ravaged. I feel socially disenfranchised, as if I have no place in the world. I am living on the edge of darkness, huddled down deep inside myself, wondering whether I will find myself again. “it is my portion to die out and disappear.”

I need to bear constantly in mind that there is a solution to every problem. Something as simple as making a list of problems and solutions can be immensely helpful as it helps to put them into some kind of perspective. I have got to this stage and the darkest hour is just before the dawn. I will not let this illness win. I must triumph over this nameless dread. A life lived in perennial fear is no life at all. Time propels you forward. There is no turning back.

Welcome to Living with Schizophrenia

 

 

Writer’s Block

I face a blank sheet of paper – ice-white and treacherous. A No Man’s Land I cannot cross. My thoughts are imprisoned in my head and I do not have the key needed to release them. My head is a wasteland. My brain is teflon like. I wonder what the medication is doing to my mind. Abilify is known to cause atrophy of the brain. Some might say this began happening to me a long time ago. Now it seems to be accelerating. And I am terrified. So forgive me if entries are sparse and disjointed.

Apologies in Advance: Some things are hard to hear

This is how things used to be:

Why is it that the mere mention of mental illness arouses such extreme reactions?

We are freaks, outcasts, deviants.  We  arouse hostility and fear.  Unlike Bedlam today’s lunatic asylums do not attract tourists.  Nobody wanders through the wards laughing, joking, pointing at the inmates. But I  know that if they could they most certainly would. We are  protected by the thin veneer of civilisation.  But something tells me that in the years since Bedlam closed its doors, humanity hasn’t changed a bit.  The stage occupied by the mad has moved to that voyeur’s paradise: reality television.

The mentally Ill represent devastation.  Lives laid to waste by some invisible force over which we  have no control.  We do not follow the rules.  We do not obey instructions.  We are weak, we are feckless, they are helpless.  Our very presence corrupts society.  The industrious middle classes are the most hostile.  It is  not that they lack imagination.  It is not  that they are devoid of empathy.  Far from it.  They posses those qualities in abundance.  They understand more than they want to.

People are afraid because one day they know it could happen to them.  Like aerial bombardment.  No one knows who the missiles will hit next.  But they will never acknowledge that.  Not in a million years.

If you have a problem with this then please tell me why you have a problem with this. I need to hear alternative views.

 

On Boxing Day

Warning: Tediously self pitying content ahead

I wrote this on Boxing Day:

(Fun Fact: Boxing Day was traditionally a day off for servants and the day when they received a ‘Christmas Box’ from the master. The servants would also go home on Boxing Day to give ‘Christmas Boxes’ to their families.)

I have given myself five years.  I am severely mentally ill, unemployable and thus, economically unproductive.  I am a useless eater. I am also childless and possible barren.  I have no life and I am terrified of the future.  Life is brutal and I am not equal to its challenges. (Note: I see this as my failure not the failure of life itself.)  The one and only human being who loved me for myself had departed from the planet.  I have decided that if I do not get a job, have a child and a meaningful relationship in the next half decade I will erase myself from this world.

If I were a mangy cat I would have been put to sleep long ago.

 

Mind the Gap

Mind

Aktion T4

Blackbirds

This False Dawn:

A warrior in a non existent war
Afraid to sleep, afraid to wake
In the world but not of it.
I am the edge of darkness
inter-dimensional interference
Wouldn’t some say it was the work of Satan?
Up at dawn I embrace the bright morning
And I don The Mask Of Sanity

And enter the belly of the beast
And on the tube I read about
The latest greatest media orchestrated witch hunt
Which in the end will drive
us all Into the arms of revolutionaries.
because that is a measure of your worth, they say
Someone had done a terrible, terrible thing
manipulated idealism, orchestrated misery

They isolate it from the grand sweep of history.
And their shrunken world is divided
Into the victors and the vanquished
This was once echoed in my own worldview
I do not think this anymore
They have never loved me
And they never will
But I no longer crave the approval
Of the world. It is not a prize worth fighting for

I do not know why I am here
But I did not give myself life
so I have no right to take it away.
Our duty is to hold the line and in comes the cavalry.  
you’re a bit late. Too many moving targets to be eliminated
I do not view the world through
a simplistic paradigm left over from the French revolution.
A symptoms of an enfeebled society.

It takes courage to live, not to die
Love, money, popularity
Mean nothing to me
I am unworldly And always will be I
know this now And I embrace it
Fully and without Resentment