Sunday, 24 September 2006

That Was The Week That Was - or - Where There's A Will, There's a Way

WTAWTAW - Part One (Where There is Not a Will):

Before I submit to the Neuro-Surgeon's cheese planner (no advice yet on when) I have to do what I should have done years ago: provide for my Bump; not just her inheritance but also make it straightforward for her, as her life is also limited by illness. So, one of the many things I have been working on these last few weeks, is finding a Solicitor to write my Will, or rather, funding a Solicitor.

I have no money beyond my immediate needs - nothing new for dis-abled people in this welfare state but thinking logically I knew there must be a solution to this problem somewhere. If my disability results in no money, my disability should not prevent me accessing legal help, whether or not I in my wheelchair can access the solicitors' chambers. I knew there had to be a way - I just had to find it.

(By the way, another way of finding funds to fund a disabled life, is by applications to charities . In this way I have funded an electric wheelchair for legs that don't work very well, an electric tumble dryer for wet days that don't dry the laundry very well and an electric dishwasher, so that Social Services don't have to provide a washer-up.)

The wonderful web told me it was possible to fund a legal will, through the sites of the Citizens Advice Bureaux , the Community Legal Service and the Legal Services Commission. So UK readers, if you are disabled or you have a disabled dependant, and if you are dependent on means tested benefits, you are entitled to free legal help for will writing. Straightforward. All I had to do then was persuade a firm of solicitors that: Yes, your firm is listed but: No, I do not have to pay your fees. You are funded by the LSC to provide this legal service free to me. I had to do some gentle polite persuading, point them to the web site, show them where they are listed, then step back and let them recover their superior composure and offer their service to me.

I also had to find Executors who would be able to deal with my ex; he who would be waiting in the wings ready to jump in and manipulate my bump's life if I was no longer around to fill the post of protector. It is the case that a (very) high earning solipsistic father sees no irony in our state of state dependency while he earns fees advising clients how to provide for their own offspring in the administration of their estates and trusts. So thank you those friends and relatives who, knowing what a pile of poo he is, are nonetheless willing to take on that responsibility, for my bump's sake and for the sake of my peace of mind.

I think this is an indicator of arriving at that state of being a 'Grown Up' - using time and energy now in planning for the future, when that future is unknown. But then I think, I am not doing this purely selflessly; in doing this, it is one less thing in the back ground using up my energy worrying about it.

Sometime, I just want to be looked after. Sometimes I just want the professionals, who are paid to be professional, to do their job pro-actively without the need for my limited energy being used; first to research, then to tell them, what they should be doing.


I do not mind being the one to tell/suggest to my medical professionals, what might be the problem, what might be the solution, what we might consider doing. This, to my mind, is being an equal stakeholder in the management of my health and there is a willingness on their part; so we find a way to do it and it has worked well for a number of years. I am blessed by having two wonderful ladies as GP and Rheumatologist.

So, reading up on my various drug patient information sheets and Lupus management publications, I took the initiative and asked the Rheumatologist whether it was wise to repeat some tests for aspects of Systemic Lupus that I did not have when initially diagnosed, in case I have developed them, which would be a suprise to the post-operative medics if I did not recover from surgery as they expected. Best be prepared. So that will be seven phials of blood taken next time I submit to the extracting needle.

WTAWTAW Part Three:

I am now an equal stakeholder in the provision of disabled facilities and adaptations to my home. I have not previously been an equal stakeholder, despite various central government pronoucements over the years which have decreed that a disabled person should have an equal, and equally respected, say in what is provided for their needs. It is a fact that a paternalisitc attitude permeates social care provision, particularly where grants are dispensed. So it has been difficult for me to take on that status granted all disabled people by the Department of Health's 'Fair Access to Care Services: Guidance on Eligibility Criteria for Adult Social Care', when I had to educate the professionals at County Hall just what that criteria meant to the way they dealt with me.

All is now about to change and the logic of law has come to my aid. And it came about thus: to save money, the local authority (County and/or District council) have contracted with an outside organisation to manage and administer disabled facilities and adaptations. That organisation, lets call it 'AdaptaCrip' (just for fun, not its real name!), is professional, has no historical burden of paternalism to conquer, and enters into a contract with the person needing the disabled facilities and adaptations. The repercussions of the fact of this legally binding contract on the stance of Social Services, was wonderful to behold at the meeting at my home last week, sat around my dining table. I was empowered by AdaptaCrip explaining to Social Services that their contract was with me, and that now social services are just a funding provider who they would deal with on my behalf. To the spluttered protestations from Social Services defending their right to control my life, AdaptaCrip patiently explained their own position in this contract, and the position of Social Services, and my position - the supreme stakeholder. Now, lets see if it works. Where there's a willingness, there is usually to be found, a Way.

Saturday, 16 September 2006

The Icing on the Cake

Top of Page Postscript - Saturday 16th:

Charles Dawson (link on right) has kindly mentioned this post following his blog on abuse: 'Father...', but as what follows is rambling, be assured it gets there in the end/middle. ~ ~ ~

Originally posted Wednesday 13th:

Thank you blogging friends for your kind thoughts and supportive comments, and for visiting even though I was absent. I continue tired and in pain and using the laptop exacerbates both those so I have to limit my blogging life for a time. I am very aware that pain and fatigue are daily visitors to many of you. I have not responded to comments or posts that I would have liked to.

In the very early years of my counsellor training, in role-play, a sample question was: 'what do you eat first, the icing (frosting) or the cake?' - used to illustrate how we prevaricate or reward ourselves. It was explained that someone who eats the icing first, the cake afterwards, may spend all day putting off the hard jobs (the cake) by doing first or spreading out the available time on, the fun jobs (the icing). Simplistic I know.

Hard jobs versus fun jobs - my available energy and available time before pain becomes too much, could no longer be used first for fun (blogging being stimulating, interesting, entertaining and in relationship with others), and after for 'work' because the energy and (relatively) pain-free time ran out before I had achieved the minimum necessary work. As the situation built up I became over-anxious, could not sleep. Something had to change. I was indulging my need for interaction through emails and blogging, rather than using my laptop for essential work. Energy has had to be diverted to home help recuitment; interviewing, then employing and training a new second home help - always very tiring, but she is good, which eventually will make life run smoother. Life has been further complicated by having to gradually move the day of the week I take the neuro-toxic drug Methotrexate that controls Lupus, in order to accommodate a hospital appointment on a Monday, usually a day I sensibly withdraw from the world. So for a few weeks I have unpredictable down days. All this is my version of a complex disabled life. I know life is less 'easy' for others.

In addition to some volunteer work, the term 'work' for me also includes the primary task of managing my cogdysfuncked practical life as an ill and disabled person. I have had to concentrate available energy on the need to keep up with and in control of all that is involved in achieving disabled facilities in my home; all the complexities, all the people and organisations involved, and I manage that on my laptop, the use of which causes pain. The anxiety and pain and sheer physical fatigue built up over weeks ... so I had to be firm with myself and call a halt. Too tired, too much pain - a familiar place for many with health and disability issues to contend with.

There is also that other meaning to this post's title - when something has been topped off, or a final event has brought to an abrupt point some situation, as in 'that puts the icing on the cake'. Yesterday's synchronistic reading of Charles Dawson's blog was such an event. He has written powerfully, empoweringly, about abuse from his own experience. His experience is not unique. His ability to write about it is uniquely Charles Dawson. His post connected, for me, with events in my life in the last few days. His post has brought me back to the world of my blog. Connecting with this important part of my life. The link to Charles is on the right.

Synchronistically Charles's post connected to events in my current outer life. On Sunday afternoon, a young neighbour, in this quiet village lane, was led out of his house in handcuffs by the police, body frisked, and put into one of two police cars which then sped out of the village with sirens blaring. As he was led out to the police car, his wife stood further down the lane with a policewomen. The visible police presence made it a very public event. The sirens seemed to make it more so. A private matter that had needed police intervention. I do not know the details. I cannot know the whys and wherefores*. Whatever their experiences that led to his arrest, it had nothing to do with me, and it did not involve me.

But I was left physically, literally, shaking for the rest of that Sunday until the early hours of Monday morning. The foundation of my safe existence in this village had been shaken, again. For a time I was thrown back into my experience eight years ago (the trauma of which triggered Lupus) when the farmer over the way from here who I had been in relationship with for a number of months, became violent when we went abroad on holiday, away from family, friends, neighbours; where I was isolated from protecting influences.

To the 'friend' who had introduced us, who distanced herself from any implicating responsibility by saying I had not managed him properly and therefore was at fault, I said: how could his violence have been my fault, I was not there (years before) when he took a gun to his wife. It was only after I returned from that disastrous violent holiday and told another neighbour (in this small community) what had taken place, that she told me about his past history. Why, oh why, hadn't she warned me before ! Because it was assumed his past violence was somehow his ex-wife's fault; the woman's fault when a man is violent towards her. I would be better for him. I would manage him better. ?!

Just as the events of Sunday threw me back into my experience with the farmer, the experience of the farmer regurgitated bad aspects (there were some good) of my marriage. And similarly, the bad aspects of my marriage had thrown me back into childhood. Childhood negative experiences of my parents led me to being the adult that did not see odd or dangerous situations as clearly, or in time, as others may have done. Both with my ex-husband and the farmer. Childhood experiences led me into psycho-dynamic counselling to understand what was happening. It works for me. It is not necessary for everyone.

In childhood I was anxious and frightened. Of my father. Unprotected by my mother, indeed sacrificed, so that his moods and arguments were directed away from her onto me. From the age of six months until I left home, at seventeen. Never my sister. Never my mother. The control, the danger, were directed only at me. I was the first born. It was deemed my fault. One of the many legacies of that experience of childhood was to marry a man strangely akin to my father, not physically abusive, but emotionally damaging, from his own damage, his paranoid reactions, his disordered personality, his childhood damage, but projected outwards so that everything was laid at my door. Not at first, but gradually, insidiously, over many years.

I know this post is rambling and perhaps only out of my experience is there a connecting thread throughout related to the title. Charles Dawson's blog was the icing on the cake. The precipitating event, for me, back to the laptop, back to the world of my blog, the world of blogging connections and friends.

Blogging for me, as perhaps for you, is a way to overcome isolation, whatever that isolation may be in (work, relationship, health, community) or may be caused by. So when I was thrown back into past anxieties, I felt cut off from this source of virtual arms around me, by my self-imposed limited laptop use. On Sunday I felt I had made the sensible choice because I needed to keep pain free energy for Monday's hospital appointment, which was always going to be a bad day, and another meeting with Social Services on Tuesday had to be prepared for. So I felt not reading or responding to emails or blogs was sensible in my circumstances. However, reading Charles changed that. So I am back, though in a more limited way for the time being.

The really luscious shiny icing on my cake, in my life, was the good outcome from the feared Monday event. On Monday at the Neuro Surgery Clinic at Southampton Hospital I was given the unexpected excellent news that I do not have to have a hole drilled in my skull, my forehead. There will not be a need for the resulting hole to be covered by a metal plate held in by titanium screws that eventually my skull would grow new bone around; no need for my brain to be at risk (I imagined) of a slip by the neuro-surgeon's hand holding the drill, nor my immune suppressed Lupus condition to be at risk of hospital acquired infections. None of that is necessary. Thank heaven and all the angels for that.

Because of Lupus and Meniere's disability related circumstances, for four years I have been putting off the surgery for removing the skull osteoma - a benign growing lump of bone on my forehead. For fifteen years X-Rays and MRI scans measured its progress and my GP assured me that dramatic changes in my personality from pressure on the brain, would indicate if it had become dangerous. To which I replied; some would say that ....

For four years I have been afraid, since the first consultation at the Wessex Neurological Centre. For four years I have not been able to contemplate managing my life's practicalities such that I could contemplate the surgery and managing during the recovery time afterwards. But it has been getting very painful and I have been worried, so I requested the surgery. Then felt very afraid. In recent weeks the excellent, professional, fount of medical knowledge, Charles Dawson, has provided background email support to my medical questions. Thank you most sincerely Charles.

The consultation on Monday with the neuro surgeon initially confirmed all my fears; it was growing significantly fast, (6 cms x 7cms is way too big) and it needed to be drilled out, the hole would be too big to leave to regrow the bone, so a plate would be inserted. Then the consultant left the room to check the last MRI again. She returned a different woman. "No, we don't need to do that at all. It won't be necessary." ! Huge apology by her on behalf of the department. The specialist registrar I had seen four years ago had been wrong in advising me that the osteoma had to be drilled out. Now I was told that with the form of osteoma I have, there is no need to risk my brain by drilling my skull. Oh bliss, oh joy. Instead, the neuro surgeon will cut and fold down a flap of skin from the top of my head, slice off the big bump (imagine using something like a cheese planner) and the second adjacent nascent one, then staple my skin back where it came from. Not even a visible scar.

If I hadn't been so blummin' chuffed and totally ecstatic with gratitude and relief, I would have been tempted to make a complaint. Because five years ago my GP said it would be a simple procedure ("... imagine something like a cheese planner...") but the specialist registrar in neuro-surgery had said: "Oh no Ms Sally, this is your brain we are dealling with, not simple at all." So, the icing on the cake is the excellent news which I am sharing with you too.

I have done it again; over the two days of writing this I have spent too much time here tapping away on my lap. The pain killers are not working. Nevermind. I am off for a drug induced nap. The rest of the week is quiet, nothing has to be done and nothing needs to be prepared for. Time out. Thank you for reading.

Bottom of Page Postscript (Saturday 16th):

* Inevitably my interpretation of events, and my reaction, is a result of my projections; my projections a result of my past experiences.

My past is complex, like most peoples', so the first projection, and emotional reaction, to the police taking away my neighbour, was that he, the husband, was the guilty party, the male abused the female. Having projected out that layer of my past experience, the next under-lying layer came up. My father was damaged and I feel more compassion for him than for my mother. So, my next imagined scenario has been that the man is the injured party. In real life, over the road at my neighbour's house their two cars take it in turns to sit on their drive, never both at the same time. He has been arrested, quite right - there is never any excuse for violence. However, he has spent the last two years DIYing their house into the 21st century. What if she has got bored with the relationship, wants out but wants the house for herself, to profit from his hard work ? So, get on file that he has been arrested for violence, which will be useful in future negotiations. Some women are calculating. Risky that.

Sunday, 3 September 2006

What do you do when ... ?

... you have got too much pain and not enough energy beyond that needed for essentials ?

You say: "Hi everyone, I'll be back as soon as ..."

Saturday, 2 September 2006

Yesterday, Today ... and Tomorrow ?

Yesterday I wrote:

Today I learned that a Director of Social Services in another County (where they still call them Social services) has resigned because he is not prepared to implement the effects on service provision of imposed budget cuts. I wish all Directors in all Counties would do the same.

Then there would be such a national kurfuffle that my need to throw a little tantrum would fade away and be unnecessary. I wish.

So for the moment I hear my inner child shouting "Shan't" .

I shall not comply with Dorset Adult Services (its name this month, last month it was called Social Care & Health) requirement that I submit to being visited for a Fair Charging Assessment. Not until they have provided disabled facilities in my home.

I shall not comply with my contractual obligation under Direct Payments to submit my accounts for the last eighteen months to County Hall for review. Not until they have provided disabled facilities in my home.

I cannot accept that waiting and waiting and waiting is a reasonable thing for me to do.

Nothing has happened to my request for wheelchair access and disabled facilities in my home. A request made in April 2003, a request assessed as eligible by Dorset Social Care & Health in April 2005. I am still waiting. We don't even have plans, let alone planning permission, funding, building contractors, start date, move out, finish date, move back in.

Yesterday I walked around my home hanging onto everything solid.
Today I have tripped over again.
Yesterday I was too tired to cook a meal, again.
Today I felt despondent.
Today I am thinking I should let rip and apply to the Local Government Ombudsman to review my experience.

But I'm tired.

What really depresses me is that this is happening all over the country, for very many other disabled people. I am depressed because life for me is good in so many ways, in ways that are not available to other disabled people. I am fighting for quality of life. Others are fighting for basic aspects of life that I have already achieved. Others are unable to fight. Others do not know how to fight.

I have fought, and these are the results of my past battles:
I have a wheelchair accessible vehicle and an electric outdoor wheelchair so I have independence. I am not dependent, waiting for someone to take me out of the house.
I have a garden that I can sit in and trundle around in my outdoor wheelchair, when the ground is dry.
I have a paid PA for one session a week, so I can go out and do what I want to do, where I want to go, some of the time.
I have employed home helps so my house gets cleaned, my laundry done, my food shopping, all the essentials, just enough.

At any time I could loose these services through worsening health resulting in my no longer beinging able to stand up for myself (sat down) when some budget-cut Implementor says I no longer meet their higher eligibility criteria for services, and I would not be able to do anything to stop a slow slide into a lower quality of life.

So I want the rules to change, no, I want Dorset 'Adult Services' aka Social Care and Health to adhere to the rules, so that Social Care provision does, in effect, change and for that I want staff attitudes and staff commitment to change, for the better, and be better funded. From the Director of Adult Services/Social Care and Health/Social Services,. right down to the local office Team Leaders; I want change in the attitudes and committment of those bosses who argue against their front line staff who assess disabled peoples' needs as eligible; those bosses who put pressure on front line staff because there is not sufficient budget to provide for the service users' assessed eligible needs.

Today, I am tired.

Everything would be more manageable and less tiring with an indoor electric wheelchair and adapations. Physical fatigue leads to brain fatigue, cognitive dysfunction leads to worry, all lead to mild depression.

Tomorrow may be better.