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The Power of Middle Class White Man!!!!

My brother phoned the wheelchair service and I have a loan chair that will be the proper dimensions for me arriving on the 24th and an appointment for reassessment of need and prescribing a new chair on the 25th!!!!!!

And here are my links. The Lewis one has had a few hits now, it was just slower going that usual. Who knows, the people who subscribe to me on AO3 must have all been busy when I posted!

Lewis fic with Lizzie and Joe being friends to James
http://archiveofourown.org/works/10598895


New chapter on my Doctor & Donna friendship thing
http://archiveofourown.org/works/10504089/chapters/23430597


Teaser/trailer/stand alone cut from the future/alternative Earth DW I'm writing, although this was a prologue set in another galaxy entirely, bit of world building and species and culture creating
http://archiveofourown.org/works/10568985

Henrietta RIP July 2007-April 2017

I had been housebound for 14 months before Henrietta arrived. In that time I had two appeals to get my DLA back and an assessment from adult disability social services which gave me the direct payment to pay for six hours help in the home. The little six and seven year old babyklingon was being taken to school and brought home by a rota of mums that one mum organised for me. She was going to her after school clubs in taxis on her own with the company I opened an account with, guaranteeing me the same drivers with DRBs.

Then Henrietta arrived. At first I was a bit nervous and embarrassed. At first she was a tool. My Mum always called her a ‘contraption’ but then my chronic illness is ‘ailments’ and my disability ‘problems’ to my Mum. It’s the way she is. But BK was so upset that Mummy was in a wheelchair we gave her a name and a voice and a personality. Over the years she grew into it and we grew used to her and loved her as if she were Real.

Having her meant just under a year later I had the option, when the school was not only refusing to accept BK’s diagnosis of dyslexia and were lying to me about the support they were obviously not giving, the way they death with the severe bullying that led to my little eight year old to try to hang her self was ridiculous in extreme, Henrietta gave me the confidence to take her out of the school to home education as a temporary emergency measure until I got her into what I hoped was a better school, the other side of town. It was also the church school, as Hen meant we could worship at that non-judgemental church, which BK loved, unlike the rather racist, judgemental, unsupportive with learning difficulties, Madrassa and the local evangelical church on the estate that spread gossip, we had tried in the past since she was a toddler (I was raising BK both Muslin and Christian due to her mixed heritage until she made her choice). She made her choice at St Peter’s, which we could get to thanks to Henrietta.

First my tiny seven-year-old Klingon sat on my lap when tired. Then, as she grew fast, she stood on the battery case at the back. By then the Infant Ewok (her Build A Bear ‘sister’) sat on my lap and we made quite a sight like that around Oxford and South Oxfordshire for about three years. Then she was towed by roller-skates or scooter until she became ill herself.

Henrietta got us out and about, once I was home-schooling permanently, we went on our bus and then train adventures, building all sorts of research, writing, geography, history, science and social and sensory confidence and coping strategies into the adventures.

When the final straw with our the doctor’s led to the lies of the SS and the threats to take BK into care, we were able to change doctors as we could get there, thanks to Henrietta. And what an amazingly supportive GP we have now.

In the beginning, she was transport, and I got out at church or a cafe with my stick, or parked her at customer services and got a trolley to do a grocery shop, but since the genuine flu and then the seizures/mini strokes (and the neurologist still hasn’t made up her mind, they could just be part of severe ME following the flu!) two years ago, I can’t go far at all with walking frame ot crutches. And so I was in her almost full-time out of the house.

Henrietta was my legs, my independence, my confidence, and my (imaginary) friend and support. Her ‘voice’ in my head kept me from having meltdowns as over the last two years as it is me that suffers more from sensory overload and auditory processing that my daughter. She seemed to know the way home from the train station, bus stop, Tescos, and town. She reminded me to stop at roads.

Thanks to Henrietta I’ve been to Stonehenge, Avebury, Cambridge, Milton Keynes, Brighton, London, and High Wycombe (my family) many bus adventures in Somerset and Sussex and last summer, there was the great northern bus adventure that got us all the way to Leicester on buses on our free bus passes. I could go to Oxford anytime I liked. We went to many activities in the early days of home education organised by the Oxfordshire HE group. Obviously we could just get out and about. I have no car and my licence was taken away years before BK was born.

Once we took a wrong turn on the Ock path from the big Tescos to Abingdon town centre and ended up on this increasingly rutted mud track away and emerged in Drayton. Once we decided to take the Thames path home from Abingdon and the path got increasing wild and Henrietta skidded and we slipped down the embankment, but babyklingon is not called so in vain, and at 12 years old, she caught the handles and pulled us up and out and away from the river. But, hey, adventures are best right :)

I feel her loss so much. If I get another, it will not be the same, but I will be grateful and again independent, I hope, although in recent months and years, going out has been daunting and scary. Without my friend’s ‘voice’ in my head, I wouldn’t have done it. Not after the memory black outs. And certainly not after being attacked last summer. Only two weeks only some drunks threatened to throw up over me, as being sick on a person in a wheelchair is funny, apparently.

I have a loan chair at the mo and it is too big, and causes great pain. I tried with blankets and cushions to support my back and hips and be forward enough to reach the joy stick without painful stretching of my shoulder, but I was in such pain last night, and my hips locked, which has never happened before, I am only going out in dire need. I spoke to the maintenance people and they will chase Oxford Wheelchair Service at the Nuffield hospital to get me a smaller loan one at least. When I phoned them I got an unsympathetic brush off telling me lots of people were waiting and they couldn’t even tell me if it would be weeks or months until I’m reassessed. Then there is the change in criteria. And no, I don’t use her indoors. Simply coz my house is a tiny two up/two down with no room to get through from door to kitchen, and it’s two steps from where the chair is parked to my bed or the stair lift, and four from the stair lift to the bathroom. When I’m home I’m 90% bedbound, when I’m well I go out to get food or ride buses to get away from the house and the noisy, scary neighbours.

Henrietta, my friend and legs, rest in peace. Wait for me in the garden that is Heaven.

‘“ Real isn’t how you are made. It’s a thing that happens to you. When a child loves you for a long, long time not just to play with, but really loves you, then you become Real.”

“Does it hurt?”

“Sometimes. When you are Real, you don’t mind being hurt.”

“Does it happen all at once, like being wind up, or bit by bit?”

“It doesn’t happen all at once. You become. It takes a long time... Generally, when you are Real... you get loose in the joints and very shabby. But these things don’t matter at all, because when you are Real you can be ugly, except to people who don’t understand.”’

‘The Velveteen Rabbit’, edited.

Henrietta passed away peacefully on the evening of Wednesday the 5th of April 2017, surrounded by her family, remembering all the funny things she did with babyklingon and the Infant Ewok. She was then washed until she gleamed by me. She will be missed so much. She was Real.

me and the homeless

In 1992 my partner and I were evicted from our bedsit because he lost his job. We found a squat and where then thrown out violently. I was on chemotherapy. From June to November we lived in his car and snuck into Brookes Uni and used the disabled toilets in the Gibbs building (then the social science building)to wash before I went to the library or lectures and he went to work. In 1990 my step dad through me out when drunk and I spent three nights on the streets and several weeks sofa surfing before we found the place we were evicted from in 1992.

In 2000 me and the baby babyklingon fled domestic violence and was also evicted from the student flat we moved into in Nov 1992 as I had to take a break from my Masters. We'd lived their so long by combination of part time degree, his degree and teacher training and my MA. We avoided B&B due to physical disability and moved into a 'stage 2' temporary homeless house'. there the council left us and forgot about us until the owner wanted his house back, and for 3 months we had no idea but we ended up in the HA we are now. For the first year every day I got up I thanked God for the home no one could take away. David Cameron's govt took that security of permanence away.

I'm mostly housebound these days. I get out into Oxford city centre away from my noisy scary neighbours rarely. These are my facebook status updates about the people I meet when I wander about the beautiful city full of dreaming spires and rough sleepers...

Read more...Collapse )

On a personal update - BK saw her neurologist Tuesday after a years wait since the last appointment (and a few things like EEGs and MRIs) - she is going to refer her for memory assessments, which is needed but a foot in the door, will try to get ENT to provide more vestibular balance physio therapy as they refused and asked for her permission in a case she is presenting, a how her life is been put on hold as apparently you get kicked out of paeds at 16 but most adult services cannot be accessed until 18! Anyway, progress of sorts, as in it could be the fall down the stairs, the constant head banging from primary school, a combination of restructuring of brain/psychosomatic due to her father abusing her (and me in front of her) or all three. But she needs support and help living with it, like CBT and/or mindfulness as well as the physiotherapy, all of which she is technically too young to access...
Got letter from DWP literally out of blue. Work Capacity Form. Did one of those when transferred to ESA and put into support group with out Atos medical. Literally no support services in south oxfordshire left apart from CAB to help. On mental or emotional spoons left at all. Can't do f all most of time. Lie in bed waiting to go to loo or make tea etc. In on bus adventures only to prevent serious stage meltdowns due to state of house and body. Make me more physically ill though. They're gonna put in in work group aren't they and leave me to slowly starve or tip over the edge and kill myself. Wish I was dead. Really do. I'm no use to BK anymore. Seizure last night made things worse for her. Except she'll be homeless without me. So have to go on somehow. But after BK's PIP I've no fight left. Why don't they just gas us and be done with it. I've no doubt a nice referendum would give them the 'mandate' no problem. Daily Mail's full of lies, hate and blame of the sick and disabled already.

Also, on the subject, last 3 times I have gone out of the house I've been the victim of low level disabled hate. Teens finding wheelchairs funny. Drunks threatening to be sick on me. Drunken idiots at 4pm finding wheelchairs funny and demanding I explain myself. 2 mins after this lot harassed me they threw rubbish and larger over a woman in a hijab with a buggy. BK has spoken to police. Sign of the times sadly.

But, as for what the Commons chose to do yesterday, despite the Lord's attempt at protection with their rejected amendments, I am disgusted. "Freedom is like air. You only miss it when it's gone." So said a democracy campaigner from Tianamen Square over 25 years ago. We're currently breathing more CO2 than oxygen. Some of us more than others. How long til we all notice we're suffocating? Human rights can't be taken away as a bargaining chip. Words cannot express how disgusted and ashamed I am with my country right now.

Happy Birthday!

Happy birthday moth2fic
I hope you have fantastic day doing things you love with your loved ones and get to eat plenty of cake :)
xx

Tags:

advice please

I'd never thought I'd miss my neighbours so much - the alcoholic drug dealer and her shouting and her teenage mother for a daughter, or the lovely but weird couple and their 5 noisy boys and their chain smoking, and certainly not the ex prostitute who was an ardent UKIP supporter (why, I have no idea, as she was disabled and her history, well...). all 3 houses in the two semis were completely refitted (say rebuilt inside!) before going onto the market at 'economic rent' and the new people are all very quiet (nice) but very judgemental and do not so much as smile, blank us when we say hi, and even walk in and slam the door when they see us. Today BK suggested they think we're the druggies. So, feeling so isolated and alone, more so now since I was attacked in Abingdon and lacking any confidence since my fall, I thought, what is I write a note introducing us and explaining a bit why we seem so housebound and are still in pjs all day and why sometimes there is shouting. It can't make matters worse, can it? Please, someone help me decide how to approach this. the days of smiley, chatty aparagusmama are gone, and it's bad enough having the stranger spit out 'scrounger, you should all be in a camp' in the supermarket, without feeling the next door neighbours and the other near neighbour are thinking it. If they are, no harm done, and I'd rather be hated fro being disabled than being something I'm not and never have been. I may have been married to a drug addict, but I've not used drugs and I'm teetotal. I don't use cope with caffeine!

the letter...Collapse )

So? If I send it to the 3 couples, is it weird? Will they think any worse of me? Or will it do no harm or might even help me feel less isolated and hated?

Sep. 28th, 2016

I so badly want to write. I'm full of ideas but then I forget them as I'm too exhausted to jot them down and my memory isn't what it once was. This 2 weeks in the caravan was supposed to be partly for me to finish Poisoned Minds. I'm desperate to. I printed out the rest and was in awe. Did I write that? Was I that good? My comprehensive plot notes make no sense to my foggy mind. Then BK's anxiety is thru the roof but I'm too exhausted to handle her properly. Her stress and fear comes out as aggression and I'm just afraid of her and I cry. Then my country has changed. All my case fics, the whole series, are rooted in a multi cultural, multi ethnic, multi national, open, tolerant, and accepting place, the most mixed and anti racist in the world. Turns out half the population were pretending. I want my country back as much as I want my mental and emotional spoons, few as they were, back. Apart from the very painful pinch hitting with BK's script and plot notes on her Women of Morse, I've written nothing for nearly a year. I tell I lie, I started a SF piece, which when BK came home and interrupted and would let me finish my thought, and the pieces inspired by the Peter Grant books, which no one has read on here, so I assume is shit. So, although I'm desperate to finish Poisoned Minds, and Bk wants me to, as do the 1000s of readers I assume, I'm too afraid. What if I start and BK becomes demanding of my attention/meltdown/falls/blackouts and I just lose it? What if I write then turn into a gibbering wreck later on in the day due to loss of mental spoons? What if I'm shit now? Or people are ooc? But I need to write. Since I lost J as a carer, had flu, had the seizures, dealt with BK's PIP, struggle to sort house, been a victim of 3 hate crimes now since the referendum, I am going crazy with stress. There is no me time. But there is also no meals cooked or a clean or tidy bit of the house - we eat rubbish and live in mess and chaos - and essentially my daughter is a mess. Nearly 3 years of vertigo but mostly that fucking PIP phone call and form filling and Atos assessment followed by mummy going crazy dealing with the appeal has undone all the progress we've made with home education. She is anxious about everything, can't cope with most things and is deeply depressed about her lack of exams and opportunities. She was in and out of the JR the week before we travelled, for stress, sleeping and the an ambulatory EEG. The glue has pulled out some of her hair. But basically, this should have happened over 2 years ago. Or more like 4. Then the symptoms would never have got that bad. But the lies from the social worker led the original referral dismissed as my anxiety, not even hers! Funny how all her GP and hospital notes from June 2010 to July 2012 and Oct 2010 to Nov 2012 are completely missing! Still makes me so angry. And we're still paying the cost. It was my birthday yesterday. A big one. I got 4 cards, slightly less that half of my facebook so called friends and family posting on my wall and 2 of you lovely flist sending me good wishes. Nothing from my daughter as anxiety stopped her going out without me and vertigo stopped her baking a cake. But the thoughts and love was there. My only rl friend in my neighbourhood didn't even post on my fb wall. I sometimes think the last 3 years of extra ill health with both of us and the horrendous stress of trying to get any support, whether disability benefits or actual care in the home, has turned me into a horrible person no one likes anymore. I'm not sure I like me anymore. So, sorry for being a dreadful friend and for not writing, if you're waiting for me to finish. I can't insert a cut, but if I could, I'd tell you who did it. It's bananas, really.

My beautiful daughter

Is all grown up! A belated livejournal happy birthday to my big 17 year old babyklingon


And transfer is now complete http://archiveofourown.org/users/BabyKlingon/pseuds/BabyKlingon/works

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Happy birthday!

To loves_books - I hope you have a fantastic day! xxx

belated birthday wishes!

I have missed more of my flist in my stress.

So, timberwolfoz, complexlight, fortesomniare, guinevere_81, princess_aleera and koscheisigma -
I hope you all, every one of you, had a fantastic day with loved ones, presents you wanted, and cake, and all your birthday wishes came true.

And I wish the same for you tomorrow ladyasprin

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