A bit of a 'crash'
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 ...