Saturday, 10 November 2007

A stitch in time ...

Did anyone else spend quiet times in primary school working their way around a square of holed fabric doing cross stitch ? I remember it being soothing; safe from that scary playground, vast and on a slope - I had balance and spatial problems even then I think, that are now known to be Meniere's. I learned recently that cross stitch was introduced into the curriculum at that time following research that showed it helped to order the brain, setting down patterns that aided education. I loved the colours and patterns then; now I cannot hold a needle for long enough to return to embroidery or collage that I used to enjoy. The picture is a small embroidery panel that my Bump did over many weeks when she was too ill from ME to get out of bed for a long time. It answered the dual needs of occupation for her and her Christmas present to me. It is number one on my list of what to rescue in case of fire or flood.

Elizabeth kindly emailed me with good wishes in case there was a negative reason I have not posted (or even visited - sorry) for a while. Thanks for hauling me back here Elizabeth. I have just had stuff to sort in my brain and on my laptop which has taken available energy.

A friend, an ancient wise old lady, died and I didn't know in time for the funeral, and I hadn't seen her because I have been out of circulation for a while and had not visited her for over a year, and my last letter to her was full of my problems why I was unable to visit, and now I feel loss and regret that I didn't. She had a profound place in the lives of many people and was instrumental in my ability to continue and cope. She was a Jungian, founded Jungian study and training in this bit of the world and influenced many people and organisations. Her funeral reflected the deep respect she was held in, and was held in the Quire at Salisbury Cathedral. I shall go there next week and light a candle for my regret and her memory.

Last week I visited my GP, just to touch base; she is another wise lady but young and enthusiastic and not afraid to speak her mind, to me or the NHS Primary Care Trust. Even so, she managed to stun me with her reaction to a letter from the Team Leader at social services that I had forwarded to her. TL had initially written that I could not have a social services money into my Direct Payments budget to employ my PA for assistance at hospital visits, I would have to get the money from each hospital I visited (four, for various reasons) and my GP would have to organise it. Since that first letter and my response of 'don't be silly, that's just bizarre and you haven't considered ... (or words to that effect !), the exchange of correspondence between me and the TL has degenerated. My GP's response was that the TM was getting personal; nasty and bitchy, (more subtly put than that, but you get the idea) and my GP was feeding that back to me in case I needed that support and input from another that social services were getting nasty and personal. Wow!

So I went home and thought about it, and thought about the two letters from others at social services that are waiting for a resply from me. Me hesitant, because the only reply I can give would be to tell them they are wrong, incompetent and not working to the duty of care they have towards me. And it all clicked into place; why I cannot find the brain energy or confidence to do this: I am ill. I am disabled. I do not have the disabled facilities and adaptations in my home requested by me and acknowledged as necessary by social services in April 2003, to enable me to cope with day to day living. I am not coping (now the latest and last systemic steroid is wearing off) . I do not have wheelchair access to disability related equipment for communication assessed by social services as necessary in March 2005, so communicating; writing on the computer, accessing files and records, notes and aids to my cognitive dysfunction, is all difficult, painful and tiring.

After I had thunked a while, it all came tumbling out of that locked-away part in my brain that wasn't being listened to; by me or by social services, that I cannot keep doing this. So I wrote to Mrs Bitch TL at social services and said: I cannot do this anymore. I cannot reply to letters. I cannot have meetings. I do not feel safe in my cognitive and physical disabilities to deal with this anymore.

Then I copied that to the Local Government Ombudsman Investigator, who has been investigating since April, and wrote that I hoped his investigations and the Ombudsman's findings, would aid me in this complex situation, in due course, when Dorset County Council have answered him, when he has answered them, when he has told me, when I have considered, when I have replied, when he has decided and told DCC and me his decision and DCC, I trust, have been found to be responsible for maladministration and injustice to me arising from that maladministration, eventually, finally, in due course. Whenever.

All that, and this; this laptop on my lap causing me pain and fatigue, because there is no space in my room for a desk or a wheelchair, is why, Dear Friends, I haven't been blogging recently. And knowledge that I need to do more out there, in the outside world with real friends, before anymore disappear. That is not to say I will be disappearing from here. Blogging friends and contacts are just as important, and real, as out there friends.

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Blogger seahorse said...

Good, well not good, but enlightening to hear some of what's been going on. Similar position here. Out of energy, other things to concentrate on. I think getting out and being in real time with 'friends in the flesh' as I call them is very grounding. Blogging brings great connections with people, profound insights and laughs along the way. But just using a computer can be v tiring I find. Getting out when able is more restorative than reflective, if that makes any sense.

Saturday, 10 November 2007 at 15:02:00 GMT  
Blogger seahorse said...

And, forgot in brain fog to say so sorry about your friend. Lighting a candle will help heal your regret I am sure.

Saturday, 10 November 2007 at 15:04:00 GMT  
Blogger Elizabeth McClung said...

Yow! Thank you for posting a scene from down inside the rabbit hole. What I have noticed already in myself is that all it takes is one or two people in one agency and suddenly they are able to alter/twist reality for an extended period of time (possibly forever). And here you are, in this alternate logic place where you have to explain yourself over and over to the red queen. Part of the alienation is that (as you point out) the needs are so obvious, and the solution so obvious that others can't understand why something hasn't BEEN DONE and there is a faint tinge that it must be YOU (I mean, after all, aren't these people/agencies set up to help you, why would they be doing strange, hurtful and exhausting things to people with disabilities?). I wish we people of odd suffering had a magic wand where we can't sort out our own mangled mess but can Fairy Godmother someone elses - Okay, waving the wand anything happening? Has that social services branch mysteriously sunk into a rapidly appearing hole?

Thanks for coming back, some of us miss our blogging friends

Saturday, 10 November 2007 at 18:23:00 GMT  
Blogger Ol Nobby said...

Your experineces are all far too familiar to me and us!

However I went mad this weekend and took miles of photos and have just posted them.

I am sure there are some great meanings I could find in my photos, please note the brick wall and gate! in my postings.

My laest foray into the management world involved once again trying to get my identity corrected and incorrect information removed from my file.
which of course they refused to do citing all sorts of spurious reasons and of course them having destroyed the file and related information they say it is up to us to prove that they have done so.

Oh well not my file not my problem so we are all catch 22'd and they leave me alone hopefully!

I have a magnificent letter I wrote once a few years ago in an attempt to get noticed.

I must post it, begins with some Dumb Bunny trying to get his great fat Bonus needs his ARCIC kicked! Well it got them moving!
Hope you enjoy my laest photos Pete

Sunday, 11 November 2007 at 03:47:00 GMT  
Blogger Sally said...

Seahorse - its good to have other views on blogging -v- in the flesh friends. I liken it to listening to music: blogging/recorded music is on my terms at times and in ways that I can control how I need it to be, even pressing rewind sometimes ! Live music/outer world connections, I have to adjust to, and feel I can't keep up sometimes - but then it hits me physically, live music envelopes me and contact with outer life friends has an additional energy. I get far more intense support and relevant information from blogging friends, than outer world, but outer world is full colour, three dimensional and when I have the energy for it, envigorating. Now, both are equally essential - and equally tiring !

Sunday, 11 November 2007 at 14:57:00 GMT  
Blogger Sally said...

Elizabeth, lovely to have you here and relating to me. I think the Red Queen (yes, I shall remember and use that description) and others like her, are determined to adhere to the budget and keep their bosses happy, and service users therefore have to be managed to fit into those requirements. That is why they cannot afford to do the obvious - what the service user needs. That would take them over budget; their heads of service would then put pressure on them, rather than on elected councillors to lobby central government for adequate funding. I am a demanding service user who knows my rights, therefore the Red Queen has to undermine my ability to carry on in other ways. I have been blogging about this since the beginning eighteen months ago ... the isolation I felt then has largely been eradicated by contact with bloggers. Blogging is a powerful new tool for those of us who despite our impairments can access people and information. I would not have got as far as I have in this sorry saga, without blogging friends.

Your magic wand did work on me - I felt the sparkly glow when I read your email ! Thanks, with a big (not too tight) hug.

Sunday, 11 November 2007 at 15:06:00 GMT  
Blogger Sally said...

Hi Nobby, will look at your photos as soon as I am able. When I write about real people (such as the Red Queen) and the real situations they put me in, I try to remember to protect myself, so scatter 'allegedly' ... 'in my experience' ... just in case others unbeknown to me are reading. Do you have a Data Protection Act in your part of the world that you could use to get your identity corrected, with the help of an elected representative such as our Members of Parliament ?

Sunday, 11 November 2007 at 15:10:00 GMT  
Blogger Sally said...

Blogging Mone has visited, according to my site meter; so Hello BM - I know your physical arm problems are restricting you from more than a few clicks on the keyboard, so nice to have you visit, and thinking of you.

Sunday, 11 November 2007 at 17:45:00 GMT  
Blogger Sally said...

Thanks Ol Nobby for your second comment, but it is so much detail personal to your situation and the position of authorities in your life, that it is not appropriate to publish it on my page. I can only be responsible for what I write on my blog about my situation, and cannot publish your comments on your situation here. I hope you understand.

Sunday, 11 November 2007 at 23:23:00 GMT  

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