Always something there to remind me...

1/28/2008 05:41:00 pm BenefitScroungingScum 6 Comments

Today was supposed to be about something different, but then I read Spence's post about assisting Bill up from the floor over at the incredible Siren Voices and mine became something else.

There's a reason I won't take the Oramoprh that sits in my fridge. My friends and my doctors all think its because I'm stubborn, proud even, but that's just what I let them believe. To me it hails both reminder and warning, there every time I open the fridge door should I raise my head enough to see it.

A reminder that terrifies me, the kind of fear that sometimes wakes you in the night, and chills the pit of your stomach. A warning call. Of how things were. How they could be again. Under extreme enough circumstances. Should I lose control.

It was the weekend before I met Big. A few weeks later my family situation would reach such crisis point I would somehow find the strength to break all contact with them. Diagnosed only months before I was yet to develop the management and coping skills I have today.

I can't remember now what event caused the dislocation. The one that floored me that is. Much of that time is blurry. For that I'm grateful.

My hips and pelvis were so painful I couldn't weight bear at all. Stark words on a screen leave it sanitised, anaesthetised. It was anything but. Pain so searing, so acute I could not eat, sleep, talk or even cry. I could not get out of bed. Literally. Couldn't even crawl.

In such circumstances eventually a decision has to be made. To pee the bed or not. So to speak. I came up with what seemed like an ingenious plan under the circumstances. No fluid means no need to pee. Or so I thought. So I stopped drinking. All together. It's probably no wonder I can't remember too well. It seemed the most logical thing to do at the time.

I saw my GP first thing that Monday morning. He doubled the pain medication I then took, and wrote another prescription. For Oramorph. Spoke strong words to me about taking it. Of dehydration, danger, and never ending up that way again for want of strong enough pain relief to move.

I never have. It's always been there.

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Advice?

1/27/2008 04:40:00 pm BenefitScroungingScum 11 Comments

As long term readers of this blog (all 3 of you) will know, my hands are not in the greatest shape and so I've been lusting after voice recognition software for some time. I know, I know, there are far more sexy things in life to be lusted after, but right now some sort of software that means I don't have to limit my computer time to when or how much I can type is top of my list.

You'll also know I'm not the most technically minded of people so I thought I'd ask for advice from you lovely lot. As far as I can make out Dragon seems to be the software to go for, but there are different versions, and I've no idea what the difference between the standard or preferred editions is, or if it's even important. Can anyone advise, please?

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Never?

1/26/2008 10:00:00 pm BenefitScroungingScum 7 Comments

The Mid Essex Hospital NHS Trust has told Alison Thorpe they will not allow the hysterectomy she sought for her severely disabled daughter Katie to go ahead (see Never Neverland). According to the BBC Mrs Thorpe blames this decision upon campaigners and "political correctness"

What I still want to know, is why no-one is mentioning the original Ashley X surgery having been ruled as illegal? Oh, and the small matter of the dead surgeon. Maybe political correctness just sounds better?



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Thursday

1/24/2008 04:18:00 pm BenefitScroungingScum 8 Comments

Sorry to disappoint anyone waiting for great revelations, but there is no exciting secret to impart about my weekend. No really.

It was a great weekend though, a drink with Red, the girl I met at Toes' party, then a girlie shopping trip together on Sunday. Activities which leave me exhausted and unable to get out of bed for a couple of days worth every moment of that enforced confinement, sweeter still for having seemed as impossibly out of my reach as climbing Everest a mere year or so ago.

Earlier this afternoon I spoke to Star. She's still here, in itself a miracle of determination, modern medicine and a demonstration of how superb the NHS can be when doctors are able to work together in the best interests of their patient. Her last round of chemotherapy was so hard on her that as she put it "the sepsis came out to play" and she spent 10 days in a High Dependency Unit being treated for both that and the pneumonia they discovered whilst she was there. Now she must gain weight before the next round of chemo can be started, ideally aided by a different type of feeding tube were she not too ill for the surgical procedure needed to even be considered.

All this and more made me think of my many good fortunes, but I'm ready for bed again now and happily Maddy has written about just that today

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Monday

1/21/2008 07:34:00 pm BenefitScroungingScum 7 Comments

I'm the kind of tired that means losing all co-ordination and needing to check what day it is.

I think I'm in love.

With my wheelchair.

My hips and shoulders feel full of acid.

It was a lovely weekend.

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By Popular Request

1/18/2008 11:12:00 am BenefitScroungingScum 9 Comments

We’ve both had meltdown moments about this. First me, then him, now he’s gone again I think I’m due another. It’s so much, so soon, an overloading of the senses, creating an almighty confusion in two people each just about able to admit they are notoriously bad at relationships. But still want it. Oh how I want it.

So I insist to him, he must be married, making it all up even. It can’t all be true. He can’t be true. What I don’t say but mean is that I am so afraid this could be it, he could important enough for me to turn my life upside down that for now I will look for any reason to pretend to myself he isn’t.

He is there, a moment, memory, pleasure, unexpected amongst the mundane rituals of my daily life. Doing laundry, amongst my socks, so small and brightly coloured I stumble over large stray black strangers. Boxer shorts hang proud a stark white alongside my dental floss thongs. His shirt worn by me, stirs memories and releases faint traces of his scent from its resting place as I open and close the bathroom door.

He has left his mark both here and upon me.

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Boxes that go bleep in the night

1/16/2008 05:57:00 pm BenefitScroungingScum 7 Comments

Last week, finally, and much to my relief the stupid bleeping box that I hate wonderful community alarm was moved from my bedroom to the living room.

After my embarrassment when the woman fitting the alarm found both a bong and bag of slutty underwear in my wardrobe I was taking no chances and so had already unplugged the alarm system before she arrived. Unstable joints be damned, no stranger was going rummaging round in my bedroom again.

I've never been happy about having the alarm box in my bedroom, and did say so when it was first fitted but as the phone line enters the house there they insisted. I can be a force to be reckoned with, but even I lost against two firemen and a woman from er, the alarm fitting place. Funnily enough the firemen knew exactly why I didn't want the box in my bedroom without my having to explain, whereas the lady from the alarm company needed more hints. I must have been having some sort of psychic experience as in the first weeks after its fitting, the alarm went off, literally only minutes after The Sexy Irishman left. Cue one disembodied voice shouting out "Ms Bendy Girl, Ms Bendy Girl, are you there, are you ok?" whilst I attempted to get up the stairs without dislocating anything major in enough time to prevent a call to a keyholder, or worse the paramedics. Thus cementing my paranoia that the cat would set the stupid thing off just to spite me for ignoring it mid shag and not only would I have to deal with the mortification of the disembodied voice, but that they might listen in first. Ugh.

That was of course some time ago, but the alarm people seem to have a very strange way of doing things, and so only managed to come out to move the box last week. They phoned a few times to try and arrange a time for someone to come out and move the damn box, after issuing dire warnings that I was not to attempt it myself, however this is the public sector, and intended for more vulnerable members of society so whenever they phoned it would be to tell me that someone was in the area and could they come round in 10 minutes. The suggestion that they might book a time in advance and so avoid the problem of my saying no every time, usually because I was still in my pj's, seemed to be quite alien to them.

Last week a time was agreed upon and the same lady appeared. Whilst kitty #2 whored herself all over the poor woman as she likes to do with anyone who enters the house, but especially those clutching official paperwork, alarm lady found the box I'd helpfully left on the table, asked where the socket was, and plugged it in. Of course just like that. In the way I was absolutely.totally.not.to.do.myself. Pressed the button to check it worked and asked me where my pendant was. I didn't like to tell her that I thought it might've fallen under the bed after I'd knocked it on the floor and kitty #2 had a mad pendant attacking frenzy with it. I've not seen it since certainly. So I smiled and said I was keeping it by my bed. Which of course I was until I dropped it.

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The Britblog Roundup No.152

1/14/2008 06:08:00 pm BenefitScroungingScum 3 Comments

Thanks to Clairwil The Britblog Roundup no 152 is packed full of posts including this one from yours truly. The Devil is discussing the roundup on Radio 5 at 2am.

Updated: You can download Pods & Blogs here from the Radio 5 Live listen again feature. My mention is starts at 23min55secs. Not that I'm narcissistic or anything.

I'm very chuffed that the host of the show, Chris Vallance, said "I think it's a wonderful blog this, because it's a blog from somebody who's in a difficult spot talking about their life" Actually, I just like the bit where he said it was a wonderful blog.

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Relief

1/12/2008 01:25:00 pm BenefitScroungingScum 13 Comments

It was there this morning when I came downstairs. The brown envelope on the doormat. I didn't realise until after I'd read it and I stopped feeling sick just how stressed I'd been since the whole process started.

It's good news. No medical, no further information required, my incapacity benefit (in reality income support) will continue until a routine review in 2012.

Of course, being the complicated kinda girl that I am, my aim for this year is to somehow figure out how to get off benefit and find a way of effectively supporting myself financially from home. For now though, the relief is indescribable. Up there with looking over and seeing The Captain sleeping on my sofa as I write.

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Shameless Pimping

1/09/2008 04:35:00 pm BenefitScroungingScum 4 Comments

No, not for me. Steph, over at The Biopsy Report has been nominated in the best patient blog category for the 2007 Medical Weblog Awards. Aside from the fact her blog is fantastic, it would be wonderful to see someone with Ehlers Danlos Syndrome win this category, so if you've stopped by my blog, please could you take a moment to go and vote for Steph? Thanks ever so much!

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I see your true colours...

1/08/2008 05:37:00 pm BenefitScroungingScum 24 Comments

With the Conservative party announcing their ideas about welfare reform in the past couple of days once again it feels like open season for those of us in receipt of such benefits. Whilst Peter Hain insists Labour will cut the number of those claiming incapacity benefits by 20, 000 a year, and apologises for his administrative failings which would, if I, or any other benefit claimant were to make those kind of 'failings' on our forms, undoubtedly result in an investigation for fraud, David Cameron has announced plans to cut the numbers of those claiming incapacity benefit by 200, 000.

Now, you can call me a realist old cynic if you like, but I can't help feeling these numbers have just been plucked out of the air to appease the mythical middle Britain, rather than having any genuine bearing on true welfare reform. As one of the 500,000 under 35's David Cameron doesn't believe can be too ill to work, I thought a better way of looking at the situation would be to examine what would be needed for those in my position to work.

Now, I happen to have been fortunate enough to have been finally diagnosed and have seen a specialist in bendy people in Leeds, but that doesn't mean I don't need to see a consultant rheumatologist closer to home on a regular basis. So first of all, Mr Brown, whilst you happen to be on the subject of NHS funding, I'd like to be able to see my consultant again please. Once just wasn't enough. A nurse specialist, however nice, isn't the same, and at my last appointment where, because I have a complex condition she needed to seek advice from the consultant, she was sorry to tell me that although I should be seen again in six months, the government's lack of understanding of chronic conditions means they've cut funding to the point it'll be a minimum of 12 months. Those of us with chronic conditions are I assume the same people you're all so desperate to kick off incapacity benefit, so unless your plan is to cut the benefits bill by ensuring none of us can provide the name of a doctor treating us at hospital in supporting evidence to our claims, then I'd suggest that one of the most important things for getting people into, and keeping them in work is putting much needed funding into those areas of the NHS really most affected. The dull, day to day routine stuff. As opposed to whatever you came up with as a headline grabber whilst eating your breakfast.

Social care. That old joke chestnut. Direct payments are such a good idea, really they are, but not if the councils ration care. Then increase charges. Social workers removing vital support packages from individuals or families in their efforts to meet budgets ultimately impacts on the welfare bill. At £48.65 a week Carer's allowance is a national shame, particularly as carers are estimated save the economy £87 billion a year , but it's much cheaper to pay that, and perhaps a bit of income support than it is to fund support packages properly. It's just a little cheap to want the same people to go back to work. Those of us with disabilities who live alone find it just as hard to manage without any help, so not providing the most basic of support, in the form of personal care, food preparation, washing, dressing, cleaning, by getting social workers to insist they can't see the 'need' for it, whilst suggesting a return to work seems a bit steep. No matter how much you all insist these cuts reforms won't apply to anyone with a genuine inability to work, living on the constant knife edge of fear that being a genuine benefit claimant brings, you'll excuse me if I simply don't believe you.

Equipment. It would be nice, if you'd like us all to go out to work, if you could see your way to providing suitable equipment. Claiming that people are too disabled to use equipment such as bath lifts may seem the height of illogicality, but you'll have to trust me on this one, it's a common excuse used by social services occupational therapists when refusing people the vital equipment they need. Health and Safety you see. Might fall, injure yourself and then sue the council who provided said equipment. Thus conveniently saving themselves a great deal of money. Especially when rationing care packages at the same time. Turning the basics of life into an even bigger battle than they need to be puts unnecessary barriers in the way of work, and that's before we start to look at wheelchairs. Not exactly luxury items these things now are they?

YTS, that license to print money New Deal. I'd love to know how much cash has been poured down the drain on this one. I'm a graduate. I'm also disabled. I would love to do a second degree if it enabled me to support myself on a part time basis from home, though I haven't been able to find any way to fund that so far. Benefits advisors telling me that I shouldn't bother because being genuinely disabled means the state will keep me on benefits for the rest of my life really doesn't count as good careers advice as far as I'm concerned. Neither does New Deal for disabled people, which as far as I can make out exists only to attempt to get disabled people to sign up with the many, many, many, competing jobs brokers. That's how the get their funding you see. Which, if they did something worthwhile would be great, but in my experience all they offer try to pressure one into is the lowest level NVQ's, in useless subjects, and at the last interview I attended wanted me to be a full time support worker. That's right, for people with learning difficulties. A physically very demanding job. Why? Well, they had plenty of those jobs to fill, and no understanding of how to go about supporting the needs of genuinely disabled people. Some fed up media studies graduate who, as he said couldn't find anything better to do after university, didn't know where to start with someone aware enough of how job brokers worked to refuse to sign up with them, but overall it is an effective way of massaging the employment figures. Even if it's not an effective way of getting disabled people into the workplace.

Access to work. Once again, nice idea, shame about the reality. Anyone sensing a pattern here? I won't bang on about access to work, partly because it upsets me too much, their delays both in assessment and provision of equipment being a significant factor in my having lost the job I fought so hard to get, and instead I shall refer you to Mary's more recent experiences with them.

Tax credits, council tax benefit, housing benefit, Disability Living Allowance, free prescriptions, the list goes on. Its impossible, even with the laughably named 'better off' calculation to get an accurate financial picture of whether someone will actually be better off in work or not. Particularly when, despite it being non means tested, in reality it's all too common that entering the workplace is used as an excuse to remove an individuals DLA.

There are more, but I shan't go on, I'm depressing myself if not everyone else. What I will say is this. Mr Brown, and Mr Cameron, the leaders of our main political parties, both men who coincidentally are fathers of disabled children. Shame on you for using that when it suits you, and choosing to ignore the true reality of most disabled people's lives when it doesn't.






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Through the eyes of others

1/05/2008 12:57:00 pm BenefitScroungingScum 11 Comments

Have you ever thought much about how others perceive you? I think it's quite a difficult thing to do, Fruitrock and I were talking about it over Christmas, and now she's done this amazing (and incredibly flattering) caricature of me I thought I'd share it with you, at least temporarily. Now you have some idea of how I look, does it match the mental image you had, and what kind of image do you think others carry around of you?

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Road Testing

1/04/2008 09:15:00 pm BenefitScroungingScum 4 Comments

Yesterday I had one of those sleepy blur days, so tired and sore after going to the hospital that even getting washed or dressed was more effort than I could make. I didn't even bother to get out of my pj's when I returned the two calls I'd missed from Roland by forgetting to take my phone off silent and he let me know he was going to pop in for a cuppa. I suppose then it shouldn't have come as a surprise when, with his true coppers knock, he nearly banged the door down late this morning. I'd forgotten to take my phone off silent again, and like yesterday had missed a couple of calls from him, but unlike yesterday I'd not realised. When I hadn't called him back or sent a text, although he said he thought I'd probably left my phone on silent again, he also said I'd looked pretty unwell yesterday and he didn't want to take any chances. Bless. As I'm blogging and am a bit more honest here, if it wasn't for him, I wouldn't have made it out of the house today either.

Over a cup of tea we decided to go out to costco and road test my new wheelchair. I was too tired to blog about it in the run up to Christmas, but suffice to say the NHS rules I've posted about before mean that as my upper body is too unstable to even consider the kind of chair you self propel and as I have some, albeit mobility I'm not entitled to a power chair, I have ended up with what is officially called a transit chair. In reality that means my friends get to push me around, and if yesterday's experience is anything to go by, I hang on as best I can whilst alternating between screaming with laughter and fearing for my face. I really should have strapped myself in. I knew Roland with his love for speed would not be able to resist seeing if the chair could do wheelies with me in it. It can. You'll all be pleased to know. And we only had a few Lou and Andy moments freaking people out when I got out of the chair and walked.

In all seriousness I'm liking the chair. Even if it's too heavy for me to lift, or move in any way. Even if it has to live in the boot of my car, where it doesn't quite fit properly, making life a bit difficult for anything else that might need to go in there. How could I not love something that's sparkly purple?! It was wonderful to be able to go out for the day and not to have to come home and go to bed after a couple of hours though. Trying to 'walk' on hips that dislocate produces a kind of pain and exhaustion that I don't really talk about in the 'real world'. Once again being honest, it's less to do with not wanting to complain as the nurse specialist thought it was, and more to do with not wanting to acknowledge it to myself. If I start doing that anywhere but here then the enormity of it would probably overwhelm me and as not coping isn't an option that isn't a choice I'm going to make. That said, it was wonderful to just relax and let Roland do the hard work for a few hours, which as he said he is more than happy to do. It was even better, and more unusual to be able to go out for something to eat afterwards, I felt almost normal for a few hours. A grand day out!

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Britblog Roundup - The Scumbag/Faggot Edition

1/02/2008 10:31:00 pm BenefitScroungingScum 8 Comments

I missed posting this before Christmas, this post was featured in the Britblog round up. Hello and thanks to anyone coming in from there.

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"Please Sir, I want some more"

1/02/2008 09:09:00 pm BenefitScroungingScum 10 Comments

I had an appointment this afternoon, with the rheumatology nurse specialist. I was a bit confused when I got the letter as, like I'd said when I was at freak clinic, I was fairly sure I'd met my rheumatologist once (not the extra special bendy people rheumatologist in Leeds) but I knew I'd never met a rheumatology nurse specialist. That I would have remembered. Still, I've long since decided it makes for an easier life not to try to argue with NHS letters, so this afternoon I went along to my local NHS hospital.

First I spent the best part of half an hour desperately circling the car park looking for a space along with every other car unable to find a space. The disabled spaces were particularly difficult to find, many I noticed being occupied by extremely expensive, top of the range new model cars without blue badges. Eventually I was able to park after just waiting by the disabled bays for around 10 minutes until someone left. This though is the same hospital that blocked off all bar one of its disabled bays outside the physio unit for several months last year.

I went to visit one of my neighbours before going to my appointment. She had an operation this morning, was full of praise for how wonderful the staff were. They did seem to be, lots and lots, of friendly, nice nurses standing around. My neighbour was in an 8 bedded bay. There were 5 empty beds. As the wind whistled outside, the windows rattled and I could smell the faintest hint of cigarettes from the mothers to be smoking below.

When I arrived in outpatients I found it was very busy. Nothing like the well staffed, half empty surgical ward my neighbour was on. This was packed out. Running late. I was reassured by the receptionist it wouldn't take too long as I was seeing the nurse specialist. Not too long turned out to be around 30 minutes. It wasn't. I remember orthopaedic clinics where not too long was 3 hours.

The nurse specialist was honest. Management of chronic conditions isn't a priority for the government. We're supposed to be looked after by our GP's. Diagnosed. Treated. Discharged. No matter how unstable the condition. Just hope you're one of those lucky enough to have a good GP. For those of us who need long term looking after this is it. No bright shiny wards with patientline and named nurses for me. Just an overworked nurse specialist, kind, caring, good at her job and unable to do it properly. To use this government's NHS I have to have something that can be fixed, put in one of their beloved boxes, ticked off and filed away. Like most of us who's need is most, I don't.

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