Off to physio!

3/31/2010 02:29:00 pm BenefitScroungingScum 2 Comments

Physiotherapy appointment is this afternoon, so of course the only pair of jogging bottoms that fit my currently 'larger than it's ever been' arse are in the wash. That wouldn't be so bad if they were in the wash at my flat but my lovely carer has a habit of 'stealing' the laundry out of the linen basket and sneaking it home to wash herself. The cheek of it! Almost as outrageous as working for well below minimum wage with no insurance, refusing any kind of pay rise and taking on extra work for the love of itme. Disgraceful. Fortunately I can scrounge a pair of jogging bottoms from the little girl who lives upstairs, she's still just about small enough for us to share clothing.

It's freezing outside which is why I want jogging bottoms to wear rather than just shorts. Ok, so I'll actually be inside for the short wearing part of the proceedings, but considering how frequently people have to strip down to their underwear during physio appointments the rooms are always surprisingly cold. That's if the wind will let me out of the front door and not break my hip when I attempt to reach the car.



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How common is rare?

3/30/2010 03:39:00 pm BenefitScroungingScum 7 Comments

My neighbour went to see her GP yesterday. I know, I know...people see their GP's all the time and it's hardly newsworthy let alone blogworthy. Although, it might work as an insomnia cure CD, random people talking about their neighbour's boils or carbuncles. On the other hand that could be a true reflection of how business orientated my brain isn't and explain a whole heck of a lot about my earning potentials. Anyway, neighbour/GP...

Neighbour and I spend a fair bit of time together, but I noticed she was hypermobile when we first met. Her hypermobility is at the milder end of the spectrum, the most significant problem being that her pelvis, which first separated 20 years ago during pregnancy, has never really gone back to where it should be and these days causes her to walk with noticeable difficulty and altered gait. Neighbour is a single mum with a child under twelve so is still at home in receipt of benefits but will be expected to seek work in another year or so according to the new rules for Employment and Support Allowance. Neighbour really wants to go back to paid work and like most people who've been out of the employment market for a while has understandable anxieties about what she'll do and how. In addition to these anxieties neighbour is worried about how she'll work on the days her back is really bad and prevents her from moving around.

Over the past 20 years neighbour has gone back and forth to her GP with non specific spinal and pelvic pain and complaints of intermittent numbness and tingling in her hands. She's become the classic heartsink patient, and knowing that her doctors don't take her seriously or ever actually 'do' anything had given up hope of getting any useful support or advice from her GP.

Neighbour is also a classic undiagnosed bendy. She has a history of gymnastics and dance as many hypermobile people gravitate towards such activities alongside a history of vague, unexplained injuries which seem to hurt for an excessive amount of time and never really get better. To a trained eye her hypermobility is immediately obvious in the way she moves, talks and gesticulates.*

A few weeks ago I lent neighbour my latest copy of Brad Tinkle's Issues and Management of Joint Hypermobility, I keep having to buy new copies as people borrow them and don't give them back. Brad's book is an excellent guide for patients or medical professionals, far more affordable and accessible than Hypermobility Syndrome:Diagnosis and management for physiotherapists, which is only really worth buying if you intend to donate it to your local NHS physiotherapy department. Although I knew neighbour was hypermobile, I'm not a doctor so I suggested she read through the book, see if any of it sounded familiar to her and make an appointment to see her GP if it did.

That took neighbour to see her GP yesterday, armed with a leaflet about joint hypermobility and a request to be referred to a rheumatologist. The GP was initially reluctant but once neighbour was able to explain that she knows she is hypermobile and would like to try and improve her back problems, the GP agreed seeing a rheumatologist is a sensible step to take. Neighbour should receive a letter confirming the referral within a couple of weeks.

Neighbour brought me some flowers to say thank you. She has been struggling with chronic pain for 20 years, so is very relieved to have an idea of what is causing her problems and more importantly what she can do about it. An official diagnosis of Hypermobility Syndrome, explanation from a rheumatologist rather than just me, a referral to physiotherapy and podiatry won't just make a huge difference to neighbour's quality of life they'll make a huge difference to her ability to successfully re-enter the workplace.

The loss of the kind of specialist diagnosis and management skills currently offered by Professor Howard Bird in Leeds has wider implications than the loss of a specialist for those of us with Ehlers Danlos Syndrome. Mild hypermobility is incredibly common and can give rise to a whole variety of musculoskeletal problems. These are the kind of problems which are relatively easy to treat and manage if diagnosed in a timely fashion, but which become increasingly difficult to deal with if not spotted, partly because of the psychological impact of having a chronic, painful injury on an individual's self esteem and ability to cope. All factors which are really important when seeking or remaining in employment.

It's very easy to check for hypermobility in just a few moments, the Beighton Scale was designed to do just that. Although a positive Beighton scale is not enough to diagnose Hypermobility Syndrome or Ehlers Danlos Syndrome, it is a simple check which can be performed in moments without any specialist equipment and if combined with a few basic questions give a reasonable idea of whether or not hypermobility could be the cause of the presenting complaint.




*hypermobile people tend to use their hands a great deal whilst their speaking and move them in a typically balletic manner.


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Snoozin'

3/29/2010 07:25:00 pm BenefitScroungingScum 3 Comments


Too tired for a proper blog, it's definitely got to be nearly bedtime soon....

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3/25/2010 04:17:00 pm BenefitScroungingScum 8 Comments


It's a beautiful Spring afternoon, the first day it's been warm enough to go outside without a coat. Warm enough to turn the heating off and open the windows, although as I lost sensation in both my hands and feet a while ago it's probably time to put the heat back on.

I'm having to admit that my hip might actually be a bit screwed up. Only might though, I'm not ready to concede completely. Missing out on the bench is a dead give away the pain fairy has been attacking me with glee.

Instead I'll stay here with my feet up, behaving for once, and share some of the photos I took earlier this month.

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Cold toes

3/23/2010 02:53:00 pm BenefitScroungingScum 12 Comments

My feet are cold. That has nothing to do with anything much other than me whining. But they are. Cold I mean. Under the mistaken belief it was Spring I turned the heating off and with it my circulation. The heat's been back for a while now but my feet seem stubbornly determined to remain in Winter. Without me. Selfish behaviour indeed.

I could of course get my arse off the sofa and go and get another pair of socks, but I'm supposed to be resting my hip. So far supposed resting has included going to the shops to buy food to enable me to rest and there may have been an attempt to fix the lights above my bed. It counts, sort of. Unlike light fixing which is going to take someone far more talented than I to sort out. I stopped short of making a hole in the wall. This time.

It was a lovely weekend, ceiling incontinence aside. An 11th birthday sleepover was being hosted in the upstairs flat so I decamped to GG's. We went out for dinner and as we were leaving the pub I stepped down what I thought was a very shallow kerb leading to the disabled bays in the car park. Unfortunately it wasn't shallow and I crashed down hard on my right foot, jarring my spine and dislocating my hip at a particularly awkward angle. Fortunately GG had hold of my hand so I didn't go flying.

Despite my best wiggling I couldn't get the hip to go back so waited until we got home. I couldn't get it back then either so waited until after a hot bath and some strong weed before trying again. No luck and not much sleep either. Sunday morning after more weed I had better luck and managed to move the femur into a slightly better position from where, later that night, accompanied by much howling I got it to relocate properly.

It's very hurty in a making me feel sick kind of hurty way. I can weight bear but it makes me feel more sick. On Sunday night I was fairly convinced I had managed to chip or fracture the bone as it dislocated. I've been having more problems with posterior hip dislocations ever since falling out of my wheelchair perving at rugby player's posteriors. If my right foot was 12 on a clock face, this dislocation seemed to go out some time between 7 and 8 where it got a bit stuck somewhere on the underside of my pelvis.

I had an appointment booked with my GP yesterday for something else so used that to see her about my hip. I probably wouldn't have bothered going so soon but the combined pressures of Gangsta Guy and knowledge that I've got to reapply for my Disability Living Allowance soon won out. My GP will be asked for medical confirmation of my condition and probably find that a bit difficult to do without my occasionally attending for such problems.

I explained what had happened and that I thought my hip had been dislocated for about 30 hours or so before I could reduce it. New GP asked where I'd been to hospital and looked somewhat askance when I said it hadn't even occurred to me to go. If I went to hospital every time I dislocated a joint they'd have to build me a house in the middle of A&E. Reinforcing that message were the 3 loud cracks as both my shoulders and an elbow went back into socket as I stretched.

New GP unsurprisingly wants me to have a hip x-ray to make sure I haven't chipped or fractured the bone. I'm pretty sure the femur isn't fractured as I'm weight bearing, but then I weight bear on actively dislocated hips or knees so I suppose I might manage to do so on a fracture too. I think it's more likely torn the labrum on the underside of the acetabular socket or perhaps chipped part of a bone. Doesn't really matter, it all adds up to hurty.

I decided* that if my hip is no better by the end of the week then I'll go and get x-rayed, but as I've had many pelvic x-rays I want to wait a few days just to make fully sure an x-ray is essential. Also, I don't feel up to driving myself to the hospital, trying to trek from the car part to the entrance to get a porter to push me to be manipulated for an x-ray. Rest seems like a better plan. GG would have come to take me to the hospital, as would Roland but both are busy today. Both would drop what they are doing and take me instead, but that would be far too much like actually admitting I need help for my liking. It's taken enough persuading for me to accept GG coming over to look after me this evening.

And after all that...my feet are still cold.


*without having consulted my lovely GP should anyone want to query her judgement!


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More barmy bureaucracy

3/23/2010 01:18:00 pm BenefitScroungingScum 11 Comments

Yet another example of barmy bureaucracy comes to BSS, this time via Bonetired.

The son of Bonetired's good friends is currently studying for his GCSE's. He's an intelligent, hard working young man who hopes to progress to 6th form college next year to study for his A levels. The kind of young man we all want to encourage to continue in education and do well.

There's just one issue. This particular boy happens to have Muscular Dystrophy, a severe muscle wasting disease which affects more than 70, 000 babies, children and adults in the UK. In this particular case the pupilt concerned has done well in mainstream education with just a small support package for his physical needs, so well he's just been made a prefect at his school. His travel to and from school is provided by the local authority in the form of specially adapted taxis and all has been working well.

If this boy stays on at school for his post 16 education the local authority will continue to provide and fund transport. However, if he transfers to a sixth form college also funded by the same local authority they will cease to provide any assistance with transport.

Utterly insane, except in the wacky world of local authority funding fights.

The reasoning is thus: if he remains in a school for his 6th form education the funding for transport continues to be provided by the children's education department. If he transfers to a 6th form college the funding also transfers to adult services who will not fund the specialist transport he needs.

This is typical of the battles disabled people and their families face every day in the UK. Squabbles over which department is responsible for funding are completely nonsensical when that funding all comes from the same money pot in the first place, ie the taxpayer, let alone from the same local authority!

In this particular case the parents will have to fight the local authority to provide that transport funding as it is impossible for the boy to stay on at school for 6th form, his school having no post 16 education. The legal argument will be interesting as those under 19 in full time education are technically considered to be children for purposes of benefits and child tax credits . If they remain children then an adult section of the local authority will argue it won't have to provide for them because they are children. However, if they are in adult education ie sixth form college the local authority can argue they are NOT children and therefore have to be funded by the adult department who won't provide funding because, you guessed it, they are children.

Am I alone in thinking that if all this nonsense was removed from the system there'd be enough money to actually fund the services in the first place rather than wasting all that money fighting about who's responsible for each particular service?

If anyone can help Bonetired's friends with their forthcoming battle with their local authority please email me at benefitscroungingscum@hotmail.co.uk and I will pass the information to Bonetired.

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Drip, drip, drip...

3/21/2010 02:19:00 pm BenefitScroungingScum 6 Comments

Sunday afternoon snuggled on the sofa at GG's with a cup of herbal tea, while he watches the match-bliss. Much needed after the mayhem of yesterday.

It didn't start as mayhem, in fact Saturday started pretty nicely. Lazy morning in bed with a cuppa planning the day ahead kind of nice. And we all know where those kind of mornings lead....to a whole other kind of in bed niceness.

So, you get the picture. There was bed related niceness happening. Very nice bed niceness. For once Bendycat was staying out of the way, the dogs next door were unusually silent and music was playing to cover any nice related bed creakings. Sun shining outside and waves roaring in the distance.

The niceness carried on a bit. In fact to the point where things usually get a whole lot nicer and the sole focus is how nice they really are.

So when GG said "I think you've got a leak" the niceness disappeared in an 'OHMIGOD I must have pee'd myself' kind of mortification moment. I'd prewarned GG that loss of bladder control was something that might happen due to my lax connective tissue, but even so, pee'ing myself whilst on top of a man is not top of my list of personal sexual desires. It may be for some, but for me it's just a potentially mortifying situation. I can live with falling over, choking or drooling all over myself on first dates....but usually so can the dates. Pee'ing on them is in a whole different league, and whilst I'm an open minded kinda gal, I prefer to keep my body fluids to the more traditional locations. Pee should always be in a bathroom, it doesn't socialise well with mattresses on a long term basis.

Mid 'I've pee'd myself' panic I realised that the sound of dripping was actually quite loud. Too loud to be coming from my bladder unless we were in immediate need of an ambulance, but definitely coming from the immediate vicinity of the bed.

Whilst I wasn't pissing, the water coming through the ceiling most certainly was. All down the wall, onto the carpet and bed. Being a bit crap all I could do was flap ineffectually whilst GG sorted the mess out* and I banged on neighbour's door to let her know her know her kitchen was pissing on my bedroom's head.

Which, after thinking it was me doing the pissing came as more of a relief than it might otherwise have done!


*I know, he sounds like a saint. But it's ok, he's actually a complete twat with the odd moment of saintlyness.

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Physiotherapy

3/19/2010 10:13:00 am BenefitScroungingScum 9 Comments

I have a physiotherapy appointment today and I'm very excited about it. I can't remember the last time I had any proper physio. Death walking may be physiotherapy but it's a level of torture even the most committed physio terrorist couldn't take me to, so it doesn't count. It's also been getting steadily more difficult to do this past year and I need expert help to try and get things back on the right track.

Physiotherapy is vital for people with Ehlers Danlos Syndrome, there's no treatment for the condition so physiotherapy is as close as we get to being 'treated'. Unfortunately bendy people tend to have bodies which work slightly differently to the boring, non bendy kind* so we also respond differently to physiotherapy. That often means that if the physiotherapist is not experienced in working with excessively bendy people, even with the best of intentions they can do more harm than good.

Prior to my diagnosis of EDS I was fortunate enough to have had expert physiotherapy care as a shoulder patient from physiotherapists who taught me about the 'what' and 'why' of their actions rather than just 'how'. It's that grounding combined with a background as a swimmer and gymnast which enabled me to figure out some sort of physical therapy programme of my own when I couldn't access the kind of physiotherapy I needed on the NHS.

Options for people with EDS or even just basic hypermobility are very limited when it comes to accessing physiotherapy. Most local physiotherapists won't have the experience or training to work with severely hypermobile people, and in many cases that results in no physiotherapy at all. Some are lucky enough to find a physiotherapist on the NHS who has some experience or wants to gain that experience but mostly it's a case of pot luck. The expertise of the physiotherapy department at Chapel Allerton in Leeds gained by the years of working with Professor Howard Bird and his hypermobile patients has been the only option for many people with EDS who travel from all over the UK to attend as out or inpatients. Of course all that expertise will be lost when Professor Bird retires due to the insistence of Chapel Allerton's chief executive that a center of expertise need not have any one person in overall control of that expertise. This will undoubtedly mean increased disability for EDS patients unable to access expert physiotherapy.

I could have asked LC to refer me for NHS physiotherapy last week alongside the referrals he did to dermatology and orthotics. I'm sure he would have been glad to. I didn't even bother asking as previous referrals locally have been a disaster. There was the incredibly nice and well meaning rheumatology physiotherapist who had zero experience of hypermobile patients and who simply couldn't grasp that no matter how hard I worked my body would not comply with her exercises. I was so badly exhausted after each appointment that I couldn't cope with basic daily living tasks for an entire week, after which she'd do it all again. I had to stop going after a very short time. Being referred to physiotherapy for a specific shoulder condition post diagnosis worked better...but only for the few appointments the NHS would allow. Being referred for shoulder physiotherapy also meant only my shoulder could be looked at not my other bendy bits which despite their best efforts are still just about connected to my shoulders.

I decided the best thing to do was to return to my trusted physiotherapist in the private sector. She was previously my NHS physio and without her I wouldn't be diagnosed with EDS. Most importantly I trust her to do the right thing for my body. Private physiotherapy is expensive, approximately £40 for half an hour's treatment so my appointments will be limited to once every four to six weeks. As this physio and I already know each other well it won't be difficult to set up a rehab programme for me to follow in between appointments, but that regular expert guidance should mean I progress in a way I can't alone. Fortunately I receive Disability Living Allowance so can use that to pay for the appointments on top of the £100 a month I pay for private care costs.

I'd better go before I'm late!


*What do you mean your internal organs don't shift around at will? Theirs not yours, obviously-that's just plain dull!

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Brainblogger on voluntary work

3/17/2010 05:52:00 pm BenefitScroungingScum 2 Comments

I highly recommend this excellent post from Brainblogger. In it he explains his difficulties maintaining voluntary work with a fluctuating condition and the struggles his employers seem to have understanding the nature of his disability and therefore the need for a flexible approach to tasks.

Brainblogger is like so many of us who want to work rather than rely on benefits, but who's disabilities and the realities of a tough employment market mean that work remains a desire rather than a reality.

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A very bendygirl's tips for pain management-No.2 Do something childish every day

3/17/2010 05:05:00 pm BenefitScroungingScum 1 Comments

Laughter is a vital part of coping with life, let alone life with chronic pain. It's so important it will get a separate tip all of it's own.

Finding ways to laugh can be a little tricky if life feels overwhelming, even more so if constant pain has already begun to get you down. One of the easiest ways to laugh, feel happier and therefore in less pain is to do something childish.

Today neighbour and I made birthday cake for her daughter, and giggled like a pair of kids as we licked the buttercream off the beaters. Yesterday glorious sunshine meant I got to go for the first paddle of the year; kicking water into the air never loses it's appeal, no matter how old we get, as irresistible as kicking through autumn leaves.

Anything will do, so long as it's a bit silly and childish, it might only take a second to do, but it'll brighten your whole day and help improve your pain. What childish moments have brightened up your day today?

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"You're a nipple!"

3/12/2010 12:01:00 pm BenefitScroungingScum 8 Comments

Was announced down the phone with much giggling. Yep, you heard right, 'I'm a nipple'. In my part of the world nicknames are a sign of acceptance, the more bizarre the better. And I'm not even an actual proper Scouser, just a posh woolly back. So to be nicknamed a nipple is nicer than it sounds. There's a point to all this somewhere, honest there is...

Despite my protests to the contrary I gave Gangsta Guy another chance. And maybe a few more after that. He's grown on me, especially once I stopped my over privileged middle class princess panicking long enough to realise this man is no gangsta as gangsters don't tend to play golf unless they are the political kind of gangster. Actually, even if he was a proper real gangster I wouldn't care at this point, but he's not so happily that avoids an unnecessary moral dilemma. I like the name though, and he has agreed to it so Gangsta Guy it is. Not Really A Proper Gangsta Gangsta Guy really doesn't have the same ring to it.

Dr Heart is one of the nicest men I've ever met but appears to be completely devoid of any sense of humour so had to go. Giggles are infectious, giggles from a small, swaying stoner even more so. Don't laugh at that and you probably don't laugh at anything much. Certainly not at middle of the night puking, and then laughter is the only appropriate response. Preferably accompanied by a hand to hold back the hair. 3am vomit hair is grim.

I reduced the Oxycontin by another 10mg this week. I'm not sure where the week's gone, it all feels a bit blurry, though I definitely remember going to see LC. All was fine but I'm a bit gutted to be losing my local consultant rheumatologist at the same time as losing bendy clinic in Leeds. LC is retired and works as a locum now so is moving to another hospital. My local hospital will continue to take care of me, LC was adamant it is vital I remain under the care of a hospital large enough to have all the relevant specialities to refer to. I get the impression that despite all evidence to the contrary LC fears my aorta will just blow up one day. I suspect the wily old boy has been reading this blog too, so I'd better mention how much he will be missed. I've been transferred back to the care of the head rheumatologist who I've only met once not long after I was diagnosed. I'm pretty sure the head rheumy will transfer me to the care of the other rheumatologist so the next 12 months or so had better be healthy for me! There is always freak clinic to fall back on so I'm in a more fortunate position than most bendy people in the UK at the moment.

This was supposed to be a post about dating, so I'll save the dull medical details for another time and just tell you Gangsta Guy was horrified to discover I go to hospital appointments alone and wanted to drive me there. It's not so bad, I did catch a glimpse of 'likely to be my rheumatology consultant in a year or so' and he's very cute. Not so cute as to make him impossible to talk to as a doctor but cute enough to liven up 6 monthly clinic appointments. A girl's got to get her kicks somewhere!

Back to Gangsta Guy. He's surprisingly sweet, and even more surprisingly able to handle not just me but Bendycat. My neighbour spotted him on his knees in the frosty road trying to coax Bendycat out from the shelter of the car she was taunting him from and of course immediately informed me. As cats do Bendycat sauntered back in her own good time making sure Gangsta Guy knew full well who really wears the furry trousers in this flat.

Gangsta Guy was around to be taunted by Bendycat because he came to look after me. I was, um, somewhat not quite with it the other day, in that state where you find your own hands fascinating and no, it was not the weed. I took neighbour's advice and conceded to being looked after for once, so Gangsta Guy came over, tucked me up on the sofa and cooked dinner for me. He also washed up, stopped me falling over a few times and waited on me, thus totally forever destroying his Gangsta Guy image.

After which I was nicknamed nipple. By son of Gangsta Guy. Because I am such a nice cripple. Apparently. Gangsta's and cripples, an unlikely but impressive combination. I shall sell the theory to 'hug a hoody' Dave Cameron as the best way of reducing crime figures and slashing the social care budget. It's a policy with more merit than any of the politicians have come up with so far, and if Freud can get away with complete bullshit why can't I?








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Bog Off!-Exhibit 21-Undercover at BBC Manchester

3/09/2010 04:00:00 pm BenefitScroungingScum 3 Comments

Via a super secret souce, BSS is pleased to bring you a Bog Off from BBC Manchester. The toilet featured is the main disabled toilet on the ground floor of the BBC Manchester building.

My source informs me this toilet is usually clean and it is checked three times a day. The other good point is the toilet is spacious, but as is fairly typical it's only half fit for purpose.

Can you spot that alarm cord? Yes, there, tucked away in the farthest corner behind the toilet. Although it's not tied up as many alarm cords in disabled toilets are, it doesn't touch the floor. Best of luck to anyone who has collapsed and needs to pull it from elsewhere in the room as even with my contortion skills I couldn't get to it.

The other big failure is the location of the sanitary disposal bin. About as far away from the toilet as it is possible to get, certainly impossible to reach from the toilet with an outstretched arm. What is one supposed to do with a soiled sanitary product whilst seated on the loo, take the best aim? I hope not for the cleaner's sakes let alone the next disabled person to need the toilet. Design fail, it would have been far more sensible to swap the locations of the alarm cord and the sanitary waste bin.

There is at least a large mirror, and wonder of wonders, a coat hook. Just what do the designers of these toilets think about cripples? That we never wear coats, have Inspector Gadget style arms and the aim of an Olympic shotputter perhaps! Top marks to Aunty for the hook, and total fail to my local hospital who are to be featured in a future Bog Off for making me put my lovely, cream, dry clean only coat on the bin. I mean really, how much can a coat hook cost?

The sink is ok, and the room doesn't smell but there is a frequent issue with the cleaners forgetting to replace the paper towels. There is no hot air dryer. My source reports that one colleague was forced to pen a note to the cleaners requesting paper towels after they had not been replaced for a full week.

The other big issue with this BBC Bog Off is that due to it's location the toilet is frequently used by able bodied staff. One crip in need was left hopping mad* after having to wait 15 minutes to use the disabled loo whilst it was occupied by someone more than capable of using the regular men's toilets.

Overall the toilet gets a 7 out of 10, scoring so well mainly because of the coat hook. My source finishes by saying they are glad not to have to use the other Bog Off at BBC Manchester near the TV studios as it's always seriously skanky. Ah well, that must be cos the Beeb have already 'done' disability for this years budget!


*I know, I know. I'd blame my source, but what would life be without some slightly dodgy cripple puns?!

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The first cut is the deepest

3/05/2010 01:24:00 pm BenefitScroungingScum 8 Comments

It was last year when it happened. I think so anyway. Could've been this year, Oxycontin withdrawal being great for rubbing away the already blurred edges of my short term memory. Thankfully my long term memory should kick in in six months or so and clarify the matter. Prior to that it'd probably be helpful if I remembered what I'm talking about long enough to tell you.

.....


........

...oh yeah. I remember now. The first cut is the deepest. Supposedly. It's not though, not really. The first cut might be the hurtiest, but not the deepest. Some wounds just never really heal, helped to stay painful by further cuts along the way.

My deepest cut is undoubtedly the long term effects of spending most of my life disbelieved. I have an honesty fetish. Gets me into trouble more often than not but it's the only way I found of dealing with the disbelief. Tell the truth about e v e r y t h i n g. Always. That way it's impossible to be the liar you're accused of being. Even if the truth wasn't the most appropriate thing to say at the time.

I've been better about this lately. Good friends in my life who find the idea of disbelieving me baffling. Or so I thought.

Ben wanted to talk to me earlier this week. We talk alot so nothing unusual in that. Except he wanted to tell me how disappointed he was in me. For the something that happened somewhere in the lost Oxycontin blur. When he was telling me I was so befuddled I couldn't work out what he was actually talking about. So, I apologised for having hurt his feelings a couple of time, made a vague comment about him not really recognising how difficult things are for me most of the time, to which he agreed, and left it at that.

It was only later when I remembered that I was hurt. Really, really wounded kind of hurt. Then angry. Initially not so much, now pretty damn pissed off actually.

See, Ben was upset because he believed I'd let him down, thought I just couldn't be arsed to do the favour he was asking. He can't see why it was such a big deal, after all, all he asked me to do was look up a phone number on the computer.

'It's something so small' he said. 'And you couldn't be arsed'

Which is why I'm so hurt. And so angry. Ben is a good friend, the kind of friend who's been there for me many times. The kind of friend who really would have every right to be pissed off with me if I really couldn't be arsed to do something he asked.

Except of course it wasn't that I couldn't be arsed. It was that I couldn't at all. The hurt and anger come from someone so close to me making the assumption that I couldn't be bothered not that I couldn't.

I did tell Ben that at the time he called. I was in bed. The computer switched off and in another room. I literally couldn't get out of bed I was so overwhelmed by pain and exhaustion. My body was set to reboot and just like windows until it was done installing updates it wasn't going to do anything else.

I remember now telling him a couple of times in that blurry conversation that 'I couldn't'. I remember how much he pushed me, how he said 'it was a nothing', that 'it would only take a moment' I remember being a bit cross with him for his insistence, but not having the energy or will to explain further.

Somehow in Ben's mind that all became 'you couldn't be arsed'. And that hurts. It opens up that original wound of disbelief all over again. A scab at which no-one has picked in quite some time. Niggled by someone who I expect to know better. Someone who's own wound needs stitching. But to sew that shut I have to cut deeper into my own.

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Dr Grumble: Polysystems and Rich Pictures

Dr Grumble: Polysystems and Rich Pictures

Important reading for anyone concerned with the future of the NHS. Which should be every single one of us. Nothing in life is more certain than death, almost always preceded by ill health.

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Save EDS Leeds!

3/02/2010 06:03:00 pm BenefitScroungingScum 9 Comments

Thank you to everyone who commented or signed the petition. There is an article in today's Guardian Leeds about the loss of this vital service featuring yours truly.

Could you possibly please leave comments on the Guardian article, the more interest or support it generates the better.

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Is it really only Monday?

3/01/2010 06:42:00 pm BenefitScroungingScum 3 Comments

What little enthusiasm I had for this dating lark is rapidly ebbing away to hide somewhere with all my spoons. Blimey, it's hard work. I can barely keep up with the emails let alone the texting....the idea of finding enough spoons for another date is currently laughable.

I got up to date number 2 with Dr Heart and have seen Gangsta Guy again too. Sometime last week I think, or maybe the week before. Who knows, it's all one big blur. They are both very nice men in their different ways, but I can't see it happening with either of them really.

Of course my ambivalence means that they're both quite keen. Keen enough to text multiple times a day anyway. I'm not much of a constant communication type. Or maybe I am, and it just takes someone really, really special to inspire me into numerous banal updates about my day. As it is, knowing what various men I've only met once or twice are doing every 5 minutes holds little interest for me.

I know. I'm a bitch. A cruel and disinterested bitch.

Well, I would be if I could find enough energy for cruel-as it is about the best I can manage is disinterest in the telly. My fantasies are fixed firmly in the soporific. Even the start of jogging season was not enough to inspire more than a tweet. Fun though it was watching men in shorts run I kept nodding off.

I know. It's sacrilege. They had their bare legs out an' everything.


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