Wednesday, 11 July 2007

A bit of a 'crash'

Not a vehicle crash, just a physical/mental/emotional/psychological 'crash' ... crashed out, caved in; the need for a 'duvet day' turning into a month of wanting to hide under the covers; 'crashing' like a computer crash when there is just too much coming from too many different directions, some of it not that different from a computer crash from incoming malicious software. As my laptop did last week.

Crashing - as we do, those of us struggling with health problems on top of struggling with the system; whatever system it is, in whichever country we are in. None of the sources of my crash are malicious in intent; just life.

Regular readers will know of Social services delays to disabled facilities and adaptations. For five years. My resulting physical exhaustion leading to falls and damage to me and equipment. And fear of falling. And fear of breakdown. I CAN COPE I keep telling myself, I am ok, I can do this. Except it goes on for too long and too many things keep happening and, alone, I feel fear and anxiety that I may not survive it. For I know that: "Fear of breakdown is fear of the breakdown that was." (Reference: Boundary and Space D. W. Winnicott page 192.) More on that below*.

Many things happening that have to be dealt with, so systemic steroid injections to suppress disease activity and release me from the brain fog that is the result of the increased disease activity which is the result of the stressful situations I am in, always remembering that stress triggered Lupus ten years ago and medical advice is to avoid all sources of stress. Yes please, that would be good.

At last, a visit from the Local Government Ombudsman Investigator to examine my files on Dorset Social Services delays -Excellent. Exhausting. Now wait and see.

A resulting return of the fear and anxiety attendant to my preparation for the Employment Tribunal (against local government employer) ten years ago. Almost to the day. Same process, different type of investigation. Same fear (fear of breakdown that was). Will I be believed. Will the local authority's big guns and solicitors run rings round me. Fear of physical breakdown. Employment Tribunal process over a six month period, ten years ago, broke my health and triggered Lupus.

Meanwhile social services front line staff on the alert (as the LGO Investigator informed the County Council solicitor) so social services front line staff and team leaders are firing off letters to me, which are designed to show them in the best possible light and me as a problem service user, and all have to be answered, very carefully, to protect myself.

Using laptop on lap (no wheelchair accessible desk, no space for wheelchair or desk until adaptations in place) causes a return of severe pain in joints and soft tissues. But I have to do it because there is no one who can do it for me, no advocate or agency with the knowledge or training. Even after I have achieved my necessary facilities, there needs to be change in all social services for other people out there, who do not know their rights, who put up with delays and decisions that disable them from social inclusion and a family life. I know. Really, I know. There would be more official complaints if more people were informed on their rights by independent advocates, and supported by professional advocates to enter in the Formal Complaints procedure. Not all areas of the country have access to a Disability Law Centre. Certainly not in Dorset.

And another thing ! .... After years of distance my Mother, hundreds of miles away in the North, is wanting contact, which thanks to years of psychodynamic counselling I can now cope with without harm to me or mine. This recent change in her (and probably me as well) is weird so I am planning a visit to her, while we are both alive to do it, as she is very aged and frail and I have not been able to travel to her since ill health began in 1998. Now possible with the expected new WAV and a PA. So I am now researching (from the Disability Rights Handbook http://www.disabilityalliance.org/ ) and writing a Community Care Grant application for petrol costs and self catering accommodation, for me and my Personal Assistant and my wheelchair, as I cannot do it without her, or it. And I have had to book the last accessible self catering cabin in the neighbouring forest and pay up front to secure it without knowing if I will get the grant, so not looking forward to the next bank statement.

This visit to my mother is entirely dependent on a new and different Wheelchair Accessible Vehicle, which will not have the current vehicle's noisy wheelchair tie down system, so I can contemplate a long journey. But this too is now a problem and source of Lupus exacerbating stress. The new WAV via Motability from vehicle converting company B has been blogged about before (18 March 07 sorry link not here). The expected new WAV is the result of application to Motability last October (nine months ago) based on advice from the vehicle converting company B, witnessed by PA and photographed by me to send to Motability with application. The new WAV was due for delivery May 31st. Panic by B ... what they said in October would be workable by me in my disabilities, at end of June they said would not work, but need extra bits costing another £X00. Motability declined to pay. B pressuring me to pay. I don't have £X00. B saying it is my fault, my misunderstanding, my responsibility. Stalemate. I can do nothing but wait (anxiously) for them to accept that I cannot pay, Motability won't pay so they will have to fund it themselves. After three difficult telephone conversations with my contact at B I know he is determined not to admit his error, despite my witness and photographs and to discredit and blame me. I just have to sit tight with fingers crossed and wait for him to accept responsibility.

~~~~~

*Fear of Breakdown ... Fear of Breakdown that was:
In my psychodynamic counsellor training and training analysis, I learned that I have been blamed by my parents for all their problems since I was six months old, when my father had his first psychotic episode**. Living with that left a lasting shadow on my adult life. Charles Dawson http://www.charlesdawson.blogspot.com/ blogged on this form of abuse. My parents saw me, and treated me, as the source of my father's psychotic episodes. If they could control me and control my actions and my words, they could control their lives. I experienced the first breakdown in the holding environment when I was six months old. I left home at 17 in order to survive. Later, being married took me out of my father's dominion; being divorced risked being sucked back in. Defences had to mounted. I am now well armoured. There are chinks in the armour. Whenever some authority figure; be it a service provider, or a national organisation, attacks me I have to mount a defence that recognises the fear I feel from childhood, but responds appropriately as a capable, (although knackered), intelligent and informed adult.
(** Post-Postscript: In case I am misunderstood, let it be known that it was not my father's psychotic episodes, from his bi-polar disorder, that left a shadow on my life, but the way my parents projected their discomfort onto me; as the cause of his illness, and blamed and controlled me as their way of not accepting his medical condition.)
~~~~~

Blogging is one of my defences against the dark powers; the psychological shadows, the bureaucratic local authorities. Connecting with other bloggers is another defence; bloggers who have experience of this, in their professional lives and/or in their ill health, this being disabled by the system, by society, by the brick walls of budget cuts and bureaucracy. Recent negative waves experienced in my corner of the blogosphere did not help and the loss of a blogging friend of intelligence, wit, knowledge and experience was keenly felt.

Thank you to those who remain, and thank you for those who continue to connect, who continue to fight the good fight. During all this down time I have been aware that your lives and blogs are testament to a good fight, worth fighting for.

POSTSCRIPT ... the morning after ...
In the post today, Form IB50 - yes, the dreaded IB50 which I thought, foolishly, I was immune to - 'Incapacity for work questionnaire'. Why did I think I was immune ? Because they have not sent me one for a decade. I do not have the capacity to comply with this form's requirements. If I do this, it will take up available energy this week, when I should be answering social service's letters from two weeks ago, before I answer their letters from last week, then fill out the community care grant form, and write to the Warm Front Scheme about their contractor's disabling attitude and refusal to meet my disability needs (no I didn't bother to blog that one), and on and on and on ...

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6 Comments:

Blogger Lily said...

Sally I am sorry that life is so hard for you at the moment, or should I say even harder than usual. I am sorry, too, that I added a new post to my blog tonight without checking yours out first because now mine seems very trite, if spookily connected. No offence intended, I promise. I hope things get lots better soon and good luck with your mum!

Wednesday, 11 July 2007 at 21:58:00 BST  
Blogger Ol Nobby said...

When someone falls from the face of the erath, one has to wonder where they went and feel concern for them.

And then feel so releived when they at last return!

Thank you for comming back!

My site counter has lately shown visits from Indonesia and Iran, possibly perfectly harmless but who knows nowadays.
So I have taken a temporary hiatus from blogging for while
at least until the urge to be in contact outweighs stupidity.

We have now for almost two years completely and as far as possible completely avoided "The dissability system"

The Luck of having a partner who works and brings in an income.

We have shown just how corrupt such is and how difficult it can be to show that we are not the difficult advesarial, legations ones causing all the problems.

Maybe we should stand up and fight for our entitlements and the correction of past identity corruption but seems to us that directing our efforts into more productive directions may for us be the more reasonable and cheaper money and sanity wise than fighting

Next week I am joining an Art collective which consists of some really "scary" dissabled people and it has taken me some considerable time to build the courage to spend time with them

Hopefully it will be a growing and fullfilling experience.

Hang in there and persevere
Pete

By shear chance we also have by shear chance obtained an MPV at an incredible reduction in price

Thursday, 12 July 2007 at 08:39:00 BST  
Blogger Sally's Life said...

Thanks Lily ... I have commented on yours.

Thursday, 12 July 2007 at 10:10:00 BST  
Blogger Sally's Life said...

Thanks Ol Nobby/Pete ... I don't think you should worry about Indonesia or Iran, but what do I know !

I know keeping out of the 'disability system' would be easier in some ways, but then in a recent conversation with a female friend we acknowledged that any potential partner had to be (a) as disabled by society as me and therefore also dependent on benefits, so neither of us risked loosing our current level of benefits (just sufficient) if we were to live together, or (b) had to be so well off financially, that I didn't need to be dependent on the system anymore, but, and its a big but, it would have to be a relationship were both were very conscious of the transfer of dependence from the state to the partner, and it is a rare partnership indeed that would allow the dependant to one survive equally. But I am the eternal optimist !

I am trying to stand up and fight the system and show the corruption that is the result of central government making fair legislation to enable not disable people with impairments, but then not funding local government to implement it, and local government not insisting to central government that they must have the funds to fulfill their statutory obligations. I am the one in the middle, but I hope the Local Government Ombudsman will support me, and then the case will be in the public domain ... WHICH IS VERY SCARY INDEED !
The lady Seahorse is also working on this along a different route.
See what blogging encourages one to be brave to do !
Your Art Collective - what makes the disabled people in that scenario scary to you - I admit that some situations I cannot cope with through fear, and walking away has seemed the best solution for all concerned.
Enjoy your MPV !

Thursday, 12 July 2007 at 10:29:00 BST  
Blogger The Goldfish said...

So good to see you about Sally. :-)

I really hope the visit to your mother will be healing for you both. Philip Larkin was right, some Mums and Dads more than others. But if there's anything to be gained from the way in which that book is closed, I wish you the very best.

Re: IB50, this shouldn't be an emergency; you should have at least a good few weeks to get this back. Don't forget you can get someone else to fill it in - I even did it for a friend once (although arguably that's easier than doing it for yourself). You can also type all your replies on the computer and print them off if need be. I would take the time just to glance through it to familiarise yourself with the fact that much of it is pretty simple - unlike those bastard DLA forms. And then work on the basis of dictating or asking someone else to do the whole thing for you.

Friday, 13 July 2007 at 18:49:00 BST  
Blogger Sally's Life said...

Thanks Goldfish, your presence and contact is very much appreciated.
(oh, and I loved the bat !!!)
I have found myself at other's blogs with nothing to say that didn't sound negative or patronising, so I have been a bit of a lurker lately.

My mother - oh, we shall see - I have been drawn in so many times, and then been open to negativity, and withdrawn shaking my head saying never again.

IB50 - DLA - SDA - CCG - IS - HB - CTB - been there, done them, chucked the metaphorical t-shirt in the bin .... OH GOD In itself it doesn't worry me, just the fact of it happening now in the middle of everything else. With my cogdysfunc, I need to write it myself, read it, cut, paste, copy, rejig, leave it a week, come back to it and check it.., then cross check it against the last one (1998!)and all the forms I have sent them in the last five years, because I know they will cross check looking for ways to chuck me out of the system .... ARGH.

I cannot work with someone else on it, I cannot guarantee being able to remember or connect or link.
Its down to me. And its got to be done within the next two weeks, before the current systemic steroid is depleted. (So what am I doing here when I should be doing that ? Therapeutic Blogging thats what.)

Friday, 13 July 2007 at 20:47:00 BST  

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