Magnificent Seven P's

8/30/2007 10:09:00 am BenefitScroungingScum 4 Comments

Wow, the fabulous Cake tagged me with my first meme, I feel all excited and proper blogger like now!

So, The Magnificent Seven P's

Passion Life to me would be flat, dull and uninspired without passion. Passion makes the world go around, from the kind that inspires political arguments to the kind that's closer to home and causes slick wet excitement, I like passion to be a part of my life every day in some small way.

Purpose I'm very purposeful once I set my mind to things, even being described as single minded.

Pursuit Now that depends...on who's the pursuer or the pursued. Either can be exciting!

Position Always with the kink! There are few advantages to having EDS, but to me the most obvious come in the bedroom department...I weigh next to nothing, and go by the name Bendy work the rest out!

Pummelling Life has handed me more than my fair share of, I like to be as kind to people as possible in response.

Progress I am happy and proud to be able to say I barely recognise the desperate, frightened and confused person I used to be only a few short years ago. It's been one hell of a fight to reach where I am now, but I am grateful for everything I am and everything I have.

Personality I'm still becoming the kind of person I want to be, but every day I smile, regardless of how bad a day.

I'm going to tag the fabulous Angela-la over at Fussy Bitch, because she's a fussy bitch, and I like her style!

Update: I did post this...I think, but it seemed to disappear, so now I'm reposting it, and hoping I've understood the tagging thing?!


8/28/2007 02:53:00 pm BenefitScroungingScum 4 Comments

I have hot water! Thanks to the nice man from British Gas who disturbingly remembers both the boiler and me from previous boiler mending incidents. Worrying, though less so than being remembered by the man who collects ballot papers from the previous year when I went to vote.

To celebrate I took myself and my once again refusing to go back into it's socket left shoulder into as hot a bath as I could stand. Yes at 1.30pm. I am jobless for a reason. One skin strippingly hot bath later I've still got a dislocated shoulder, but thanks to the spliff I took into the bathroom with me I care less than I did before. Still too much though. I call this being defeated by the pain and will inevitably find some form of physically damaging activity to engage in before the day is out. Others might just call that stupid. Take your pick depending on whether you work at an NHS funded pain clinic or not.


Missing Out

8/27/2007 01:48:00 pm BenefitScroungingScum 0 Comments

Spending the vast majority of my time alone means that it's something I'm able to cope with, probably better than most, but still there are times when I feel more isolated, or simply frustrated and left behind. Like now.

Toes and Fruitrock (who unfortunately as predicted have got back together) along with some other friends have gone off to a local open day, held every year. I'm feeling sorry for myself because I can't go. This is an annual event, is always massively crowded, and I simply won't be able to access it. I'm not missing anything I haven't seen in previous years, but the fact that I can't get there makes me feel that I am. Particularly in light of yesterday.

We all went to a food festival/farmer's market. Toes, Fruitrock, me, Jen (Toes's previous ex girlfriend) and her 'new' boyfriend (of several years) Peter. It was a big deal for me. An inaccessible venue, for the first time I hired a mobility scooter...the ride along, battery powered kind. As I've mentioned before I don't have my own wheelchair. I applied for one a couple of years back, fully supported by my GP when my mobility was far worse than it is now, and due to the nature of EDS, I had to apply for a powered wheelchair. Again, fully supported by my GP. I was turned down. The rules of our local wheelchair services state very clearly that unless you use a power wheelchair for a minimum of six months full time solely indoors, they will not even consider you for a powered wheelchair capable of outdoor use. That ruled me out straight away. I refused to give up the limited amount of mobility I did have, which at the time was pretty much crawling around the house anyway, knowing full well if I went into a wheelchair full time not only would I never regain any further function, but that it would be incredibly damaging to all my joints and overall condition. I also knew sitting in a wheelchair full time indoors would rapidly lead to hypothermia and pressure sores. I weighed all of 32 kilograms at the time. I felt being forced to comply with such a rule would probably kill me. So did the initial assessor at the wheelchair services. I was told that despite all this, despite them knowing that I was physically incapable of propelling myself in a manual wheelchair due to dislocating shoulders, elbows and wrists I could not have a powered wheelchair. I could however have a manual self propel wheelchair at any time I wanted. Or a wheelchair someone else could push me in. Although they were aware that at the time I did not have anyone to push me. Sorry. Those were the rules. Ridiculous though they may be.

Fast forward a couple of years, through times so difficult I've yet to consider blogging about them, and thankfully an additional 10 kilos in weight, and I now have friends around me willing and happy to tip me out of so they can play with it, sorry, push me around in a wheelchair, but still no wheelchair. I've just reapplied for a second time through my GP, hopefully with more success as I'm going for the manual chair option, though with my size requirements it could still be difficult. I'm not going to be able to fit into any of the standard adult chairs, and I very much doubt the NHS wheelchair services will be sensible enough to allow a peadiatric chair to be given to an adult.

So, that's why, on Bank Holiday Monday, I'm sat here on my own blogging about missing out, when all my friends have been able to go out and have another great day. The NHS is great. I would hate to see us move in the direction of a fully privatised health care system. I don't have the answers to how we should fund health care, though in all honesty I'm not sure that we do have a funding problem, just a massive management and political interference problem coupled with total disrespect and abuse from the general public, but, but, but. The United Kingdom is far from a third world country. Or it's supposed to be. So, why am I sat here, missing out again for the sake of a wheelchair. Not exactly a luxury medical treatment. Like say breast implants for psychological distress.


Saturday morning and the boiler man

8/25/2007 09:05:00 pm BenefitScroungingScum 0 Comments

I'm currently without hot water and heating. The boiler decided to stop working at some point on friday. There was hot water in the morning, then later on in the afternoon, nothing. Flashing lights, intermittent loud banging noises and an arrow indicating lack of pressure were about as much as I could figure out. I swore a bit then called British Gas. My landlord pays for one of those agreement things so they said an engineer would be out in the morning. Great, bank holiday weekend with no hot water. What is with this boilers uncanny psychic ability to blow up only at weekend's, high days and holidays? It blew up the day before New Year's Eve once leaving me without heating or hot water for 48 hours in freezing weather. A fairly major concern when the temperature is dipping low enough this evening for me to need the heating on. Anyone else might be sweating but typically I'll be shivering. Maybe I need better fat reserves. Maybe not. For the good of my sanity an all. Better to freeze than be fat in these strange days.

Despite being tipped out of bed at 6am by neighbour, I still had to get up at 8am in case the boiler man arrived. Anytime between 8 and 1. Apparently. Thank god for blogging and sofa's to lie on. I left neighbour in bed. The boiler man turns up around 10 am, does a great deal of umm'ing and ahh'ing, and immediately asks why I don't get a new boiler. Er, because it's a rented house, I'm not made of money, and despite the fact the boiler is a pile of crap unable to get through a season without breaking down its a constant amusement to me that my landlord spent £3000 on a boiler worth £300, and besides, isn't that sort of your fix it? Hmm, perhaps not.

I offer the boiler man a cup of tea while he mutters darkly about never having seen anything like it, no access anywhere and stupid systems. I am wise to this and know this means sending off for 'parts' and that I will be without water and heat for days. I leave boiler man to it. He's happy in that way men excited by such things get when presented with problems they do not immediately understand. Who can't relate to that? Or maybe I've just had too many boyfriends like that. The anorak did after all send me a text to say 'someone's written anorak on my special Mr Fussy car polish, all fingers pointing at you curly!' The fact that I had a boyfriend we both called anorak speaks volumes. Ah well. I find something about men like that deeply comforting. Probably that they are the polar opposite of my father.

So, it's Saturday morning. The boiler man is in my bathroom muttering away. I'm blogging in the lounge in my vaguely could perhaps be sexy in the right context shorty pj's, with very definitely not sexy under any circumstances pink fluffy dressing gown over the top having hoped I might have a bath after the boiler man had gone. I have a neighbour in my spare bed wearing nothing but panties and vest top. Poor boiler man. I realise I'm going to have to do something before my neighbour falls downstairs and shocks the boiler man into leaving. I make neighbour some tea, and take it upstairs, pushing the mug up one stair at at time ahead of me as I go. Crude but effective.

An hour or so later I go back into my own house. The boiler man tells me he's tried everything. The boiler is a stupid system. No access. He can't fix it. Needs parts. He has to order parts. He'll be back on tuesday. Don't suppose I could wait 'til wednesday? No, I cannot wait 'til wednesday. I suspect that on tuesday someone else may come out, fulfil the terms of the home care agreement and be unable to fix the boiler because the parts have no arrived. Great. No wonder I slept the rest of the day away.


Daylight but no less mysterious

8/25/2007 08:30:00 pm BenefitScroungingScum 2 Comments

I try and wake neighbour. It's easier said than done. She moans and pulls the duvet over her head. I consider that fair enough. I leave the tea, tell her its there and tell her not to come downstairs as the boiler man is there. I go into my room pootle about and she starts to stir. Starts to panic. Starts to swear a bit. Really starts to panic when she wakes up enough to realise where she is. I go into the room as she's sitting up in bed realising she's got nothing on her bottom half except her knickers and is in my house instead of her own. I ask her what size clothes she wears, she tells me a size 10 and I go off to try and find something. Neighbour is the only person I've ever been able to share shoes with so I find her some flip flops but as I pull out a pair of tracksuit pants I think may fit her I realise this may be more difficult that I thought. I stare at the label. It says age 9. I thought they might fit her. I realise nothing I own is going to fit anyone that isn't me or a 10 year old girl. I remember I have a dressing gown from La Senza, give thanks neighbour is also a bit of a shorty and take her that. Its bright red, shiny satin. Poor boiler man. Poor neighbour.

We go downstairs and neighbour starts to properly panic. What happened? I don't know. I tell her I found her after waking up to the very faint noise. Thank god the window was open. She doesn't know what she was doing outside. Where are her keys? She doesn't know. The keys are lost. Where is her mobile phone. That she does know. It's with the friend she went out with last night. What is friend's phone number? She doesn't know. She just panics. Where is her dog? The dog is in her house. I knocked on the door to check earlier knowing it would bark, it did. She asks me over and over. Where's the dog? I knock again to appease her and the damn thing doesn't bark. She panics more and more. Where is the dog? Where is the dog? I don't know where the fucking dog has disappeared to in the past 30 minutes from a locked house. Stupid fucking dog won't bark when I again knock on the door to appease her panic. I know the damn thing is in there, taunting me with its doggy silence. Neighbour panics more. Where is her dog. Ah well I think. Better that she panic over the dog than why she was semi naked in the road at 6am.

She can't remember friends phone number, even after half an hour or so. Eventually she remembers her friends ex husband's number and phones him, telling him she's locked out. Within minutes, her friend is on the way, with spare keys to her house and her mobile. Her friend is shocked and horrified. They'd gone out for drinks, got drunk. Neighbour has hip problems, so her friend had walked her most of the way home, leaving her about 100 yards away from her front door. We live in a small, sleepy town not noted for its violent crime.

Friend arrives and we all go into neighbours house. We search, but despite that her shoes and jeans are missing. Another neighbour arrives, concerned. We discuss whether it would be a good idea to call the police. Neighbour says she has not been raped, all feels fine 'down below', but she does have bruises like someone grabbed her round the wrist. No-one can account for approximately six hours where neighbour was missing, before I found her half naked.

Neighbour is understandably stressed and freaked out. We start to joke about the situation instead, knowing that is what she wants. The other neighbour leaves, I follow shortly after, leaving neighbour to warm up in the bath.

Later I speak to her. Her jeans were under the bed. Shoes still not found. She takes various medications for problems with her joints. One of these has recently been changed. She went out and had a considerable amount to drink. Whilst taking these medications. We decide that must be the answer. Maybe she was sleepwalking. That seems the most comfortable answer. 'Thank god you found me' she keeps saying.


It's 'six o'clock' in the morning and it's starting to get light....

8/25/2007 10:09:00 am BenefitScroungingScum 2 Comments

I moaned a little and rolled over. My shoulder popped out. Stomach griping in pain as I swam further up towards consciousness. That was that, I was awake, but with no idea what had woken me up. I blinked a little blearily still, realised it wasn't fully light, and decided I was definitely going back to sleep. I'd have to get up to pee first, which could be feat in itself, but no, still coming round I knew that wasn't the reason for waking this time.

Then I heard it again. Tap, tap...tap, tap, tap tap tap. Something was making a noise outside. Pnugh. Probably a cat. Damn cats again. Fighting in the road. Maybe even up to their old tricks and throwing themselves at my windows trying to get to my cats sitting, smirking, taunting them from behind the safety of the glass. But no, wait a minute...both cats were snuggled up in bed withn me, and unlike me, they were both still asleep...purring no less. It must be early if kitty#2 hadn't started hitting me over the head with her paw to demand breakfast. Hmmm. Maybe something was actually wrong. I was going to have to get out of bed to find out.

I rolled over, popping my shoulder again as I went, and performed my getting out of bed ritual. Roll, let feet fall onto floor, hold onto bed and hope for the best. My hips popped, legs buckled momentarily, and I waited, poised there in a parody of the best bent forward over bed sexual position you're ever likely to see, until my legs were likely to hold me up, and made my way to the window. The tapping had stopped, but I could definitely hear scuffling.

As I went to peep from behind the curtains there was a louder, more insistent tap. A little more awake by now I wondered if Roland towards the end of a long night shift had come round to tip me out of bed wanting a cup of coffee, then dismissed that thought as quickly as it had come...Roland has a true copper's timid tapping for him. He would either rap harshly on the door, or break in. Hmm, maybe I should get him to break in dressed in full uniform, mmmm. I digress, though a pleasant digression it is.

I stuck my head round the curtains to see what was making the noise outside my front door. Its my time honoured method of not having to do downstairs to open the door only to find whoever it is has given up waiting and gone away. Besides, it was 6am, no way was I going to all the effort of getting downstairs without a damn good reason. There, on my doorstep, swaying, bruised, dirty, dishevelled and wearing nothing but a little vest top and pair of panties was my next door neighbour. I called out to her through the window to wait, that I was coming down, and scrambled frantically down the stairs as fast as I could without tumbling head first into a heap at the bottom.

Some moments later I opened the front door to find her stood there looking confused and disorientated, unable to say much more than that she'd lost her keys. It was difficult to say who was the more confused at that time of the morning, so I simply pulled her by the arm into the house, told her the spare bed was made up, and headed back to bed via the toilet. By the time I'd made it back up the stairs and stuck my head around the door to check she was in bed and fast asleep.


Benefits News 1

8/22/2007 08:10:00 am BenefitScroungingScum 0 Comments

In Northern Ireland a teenage amputee is refused non means tested disability benefits for being 'too mobile' whilst a politician claiming the same benefit is openly criticised for participating in a few moments of a charity football game.


Part 2 - A&E

8/19/2007 04:52:00 pm BenefitScroungingScum 2 Comments

We had to give my details at reception, name, date of birth, address, next of kin, usual stuff. All a bit difficult when you can't speak more than a croak or two and keep stopping breathing. Still a formal requirement though. Even when the details of an accident involving a cupboard door corner to the throat have been given. I made squiggly signs with my hand, but it took Siobhan to tell the receptionist that meant I wanted a pen to write down my details rather than trying to talk which by then I'd realised was making things worse.

The receptionist told us it wouldn't be long before I was seen in triage, and it wasn't. I was taken through and seen by a nurse I'd seen on a previous A&E visit. A nurse who claimed to know all about EDS. Siobhan explained to her what had happened, as I couldn't speak well enough at that point, my throat spasming too much, stopping me from breathing if I tried. Toes wandered back in towards the end of the triage assessment, he works in the same hospital. She told him she'd categorised me as yellow, so I'd be seen fairly soon, and as there was nowhere to put me in minors, I'd be safe in the waiting room as he was with me. Spending most of my life with the EDS undiagnosed and the label of attention seeking/mental has taught me a thing or two, and I knew both that she was making a bad clinical decision, and that it was personal. Whether that was directed at me or Toes I had no idea. Nor could I be bothered to do anything about it. Breathing was far more of a priority and frankly hard work.

Toes and Siobhan wheeled me back out to reception and we sat there and waited. When I was fine I was fine, but when I wasn't I really wasn't. My throat was continuing to spasm down hard every so often stopping me from breathing in. It still wasn't lasting more than a minute or two and I was getting used to it, not too worried it would carry on longer, but still a bit frightening when it was happening. Toes disappeared off a few times, looking for colleagues he might know, concerned that I'd been sent back out to sit in the waiting room.

After 20 minutes or so, the friendly looking man we'd seen coming in and out came and called me in. We'd thought he was a nurse the way he was coming out into the waiting area, and interacting with patients, but he was a senior registrar, in fact the most senior doctor in the department, and I'd noticed him keeping an eye on me earlier when I was struggling to breathe. He took us back through into the triage area, obviously none to happy with the nurses assessment and did his own. He asked me what happened, and with the help of Siobhan I managed to explain. The difference this time was that he actually did understand EDS instead of just dangerously pretending to. We managed to communicate that I'd dislocated my hip, so fallen, dislocated my collarbone and thyroid and we thought larynx too. His eyes got a bit wide when I croaked that I'd dislocated my thyroid, and he asked how I thought I might have done that. The easiest way to explain was to take his hand, place his fingers gently to my throat, and dislocate my thyroid gland back and forth. His eyes got very wide at that point and after giving me a chance to recover from the spasm that triggered off, laugh kindly at my attempts to tell him I was fine and there was nothing wrong with me I was being taken straight off to majors. I heard him very firmly telling the previous nurse that he didn't care if there wasn't any space they were to make space. If they didn't have it in 'resus' then majors would do.

The doctor wheeled me through himself and found a room in majors. A nurse came in to throw a sheet over the trolley, and that was the last contact with any nurse I had. The doctor came back in, introduced himself properly, turned on the oxygen and told me to put the mask on. He wanted to have a look in my throat, so needed me to open my mouth, at which point my jaw promptly dislocated. I gave it another go, and he managed to get a brief look. I was able to speak a bit more by this point, and so could better explain to him both what had happened and what was happening now. Mostly I tried to tell him I was fine. Nothing wrong. He seemed to find that highly amusing. He said he'd spoken to the doctor on call for ENT, and that she was already on her way in, that he expected I would need to be 'scoped' and that he was going to give me some hydrocortisone straight away. I tried to insist there was no need and my throat spasmed shut again.

The doctor went off and came back with the kit to put a drip in my arm, and the hydrocortisone injections. He chatted away to us while he put the drip in, asking about whether I was good with needles (just good at ignoring them) and joked a little about the strange position I'd naturally contorted myself into on the trolley.

By this time I'd realised that the reason my chest hurt so much was that one of my ribs was dislocated. Siobhan had let the doctor know when he came back into the room to do the drip, and after checking it, he asked if I could put it back myself. I said not a rib, but that he could. I was extremely impressed that he didn't make a fuss about unnecessary chest x-rays, and once I'd given him the go ahead, attempted a reduction there and then. The rib was determined to stay out though, so after a couple of attempts we both agreed it was best left out.

Shortly after that the on call ENT doctor arrived, surprised I think to be apologised to for wasting her time and dragging her out on a saturday night. She quickly assessed the situation, by this time a few hours had passed since I'd fallen and hit my throat, and the spasms were getting further apart, my speech much easier though my voice was exceptionally hoarse at best. She checked with Siobhan to ensure that my normal speaking voice wasn't hoarse, and I didn't usually cough the way I was, and after a quick feel of my throat/neck area and exclaiming over how incredibly lax and hypermobile it all is she decided she wanted to go ahead with the scope. She also said she'd really like to keep me in in case she had to take me to theatre, but after seeing how much I panicked at the mere mention of staying over night she said she would leave that decision until after the scope.
She went off to get the scope and prepare, and the doctor from earlier popped back in to say he was going off shift and hoped I'd be ok. We thanked him very much for all his help.

By that time I needed to go for a pee. I slid off the trolley to find I was still in full spaz attack mode. I had nothing stable in my entire body. Hips, knees, ankles, SI joint, all were flicking in and out of their sockets randomly and rapidly. Siobhan part held, part dragged me towards the toilet. To get there we had to go through the middle of two large groups of nurses, it must have been shift change. As we went to the toilet, despite being polite and lucid I was stared at with the disdain I'm sure they rightly give to vast numbers of weekend drunks, and received the same treatment on the way back...from both groups. Now, I'm used to the odd member of the public feeling that they can randomly accuse me of having been drinking if I'm flopping all over the place in say the supermarket, which is hurtful enough, but its far, far worse when 'that' look comes from supposedly highly trained professionals during an emergency medical situation. Not one of the nurses offered any help, asked if we needed a wheelchair, or in fact did anything but blatantly and openly stare.

We got back to the room just as the ENT doctor was coming back with the 'scope'. She looked at me in a totally different and perfectly acceptable way, laughed along with us, and asked if things were always this difficult for me. Talking was easier by this stage, but still hard work, so Siobhan explained things to her, including that my thyroid can dislocate, but wouldn't usually cause this kind of problem, and she very rapidly grasped that the problems were most likely being caused by the internal laxity of my throat, allowing it to fall shut on itself, spasming as a reaction to the dislocations, unlike in a non-EDS person who's collagen is nice and strong and not like melted runny chewing gum.

Whilst she was setting up her scope kit she said that ideally she'd like to keep me in for observation, even if everything was ok, but when she saw how frightened I was by this, she asked why. I told her I'd only been diagnosed with EDS for about 3 years, and before that I was 'mental'. That by now oh so familiar look flickered across her face, shock, horror, disbelief, comprehension, shame, understanding, compassion. Siobhan explained that actually although I was able to cope in hospitals as long as I thought I was going home, due to all my previous experiences staying overnight was beyond what I could cope with emotionally. I said I wasn't stupid and nor did I want to land her or the previous doctor in any hot water so if something was badly wrong on the scope then I would do as she wanted, but if it was 'just' spasming, then I wanted to go home. Please. Please.

She popped the scope in my mouth to warm it up, then into my nose and got me to swallow it down into my throat. I can think of better ways to spend a saturday night, but I've had far worse done to me. Fortunately everything was ok, nothing broken or torn inside my throat, just red, and a little swollen. The spasms were getting further apart and I was more able to cope when they did happen, so she was happy to let me go home if after a further 45 minutes without any oxygen I'd not had any problems. Siobhan was staying with me anyway, and promised to keep a close eye on me, having already chatted to the doctor earlier about handling these kind of issues, I suspect she may have agreed that in the absence of any repairable problem I'd be better off being cared for at home rather than by ward nurses rushed off their feet.

The doctor explained a little about laryngospasm, and said she was sure I'd dislocated my larynx and was now experiencing these spasms as a result of that. She was insistent that if I had any difficulty in breathing, had any noisy breathing, or got worse in any way that we were to come back in immediately.

She went went off, popping back in around 20 minutes later to check on me and give us a chance to thank her very much, then we waited another 30-45 minutes, with no further problems, and at the end of that time Toes reappeared and we started to sort ourselves out to go home.


Part 1 - The accident

8/19/2007 10:20:00 am BenefitScroungingScum 5 Comments

It happened at about 7 o'clock. We were all in the kitchen, laughing, joking, messing around, Princess Fairy Toes teasing me about my inability to cope with the three people crammed into my small kitchen, clearing up the mess from dinner, Siobhan washing up, visiting for the weekend.

I was already tired, Siobhan and I having been on a girly shopping trip earlier in the day so none too steady on my feet as I tried to open the cupboard under the sink. My hips dislocated, I wobbled and fell. As I toppled forwards the corner of the open cupboard door broke my fall before I hit the floor...unfortunately hitting smack into the corner of my collar bone and throat. The impact was hard and harsh. My collarbone popped itself out to the side, dislocating rapidly out and relocating itself back in a moment later, visibly damaging the tendon attached at the tip, running up into my neck as it went. More importantly though, my thyroid dislocated out as did my larynx.

That was it, I couldn't breathe. My throat shut firmly into spasm. Toes and Siobhan had dropped everything they were doing when I fell, Toes catching me in the small kitchen, knowing something was very wrong. He saw my collarbone pop in and out, and as I struggled to work out what had happened, my hands go to my neck, heard the crunch as I reached up and pushed my thyroid gland back into place. Later said he saw something else move around more disturbingly that he knew to be my larynx.

Both Toes and Siobhan asked if I was ok. I couldn't speak properly. I realised I couldn't really breathe either. So used are we all to falls, dislocations and any manner of trauma none of us were particularly panicked, Toes moved me into the lounge where it was lighter and more spacious so he could sit me down and see what had happened. Then he did worry. I still couldn't breathe properly. One minute I was fine, next I couldn't breathe. Couldn't speak properly to explain what was wrong. Toes wanted to know where I kept my pens. He wanted a 'biro' to hand....just in case he said. I flapped my floppy hands, wheezed a bit and managed to croak I was fine. Was breathing by then. Then I couldn't again, my throat spasmed tightly shut. Open again. Spasmed shut again. It was lasting for around a minute, minute and a half at the most. I was looking a little blue about the gills.

Toes found my ventolin inhaler and gave me a dose of that, concerned as I'm not usually wheezy. He then got the oramorph from the fridge, gave me 5mls of that which I choked and spluttered on a bit but swallowed, then promptly stopped breathing again. I'm well set up for all manner of emergencies at home, having these days an exceptional GP who prescribes wisely, but all three of us realised that this was more than typical. By now a few minutes had passed and I could speak a little, though not properly, my voice trailing off into slurring and nothingness after only a couple of words. We considered calling an ambulance, driving to A&E or staying at home and realised that I was going to have to go in, but not by ambulance. I have extremely strong views about the use of ambulances. They are for severe and life threatening emergencies only. We had access to a car, someone to drive, someone to help me, and it was probably quicker and easier just to drive. Or maybe I'm just afraid of ambulances as well as hospitals.

We found house keys and mobile phones and went out the front door. I collapsed in the road. My body was clearly struggling to cope with the shock. At my bendiest time of the month anyway, the spasms caused by multiple dislocations and shock were having huge impact sending me into what we fondly describe as a spaz attack...where I become so lax and floppy I dislocate constantly in and out of multiple joints causing me to look a bit like Elvis on a bad acid trip gone seriously, profoundly wrong. Its usually pretty amusing, especially as I tend to howl with laughter...but the lack of oxygen thing meant not so much laughing this time. That came later.

We got to the hospital quickly. Like most hospitals now you have to go through a barrier into a car park so they can later charge you to get out. A&E is no exception to this rule. Toes needed to drop us off as close as he could to A&E. It wasn't close enough. It was obvious I wasn't going to be able to walk the handful of metres to the doors. Siobhan had to half drag, half carry me into the building whilst Toes parked and ran back to get a wheelchair which he plopped me into just before I hit the floor at reception where Siobhan was struggling to hold me up.


Fuck you RyanAir

8/15/2007 03:03:00 pm BenefitScroungingScum 5 Comments

For all the laughter and bravado, things like this crop up everywhere causing difficulty, complication and disability and quite frankly making me feel like shit. It seems that trying to book a flight could be a great deal more complicated than I'd thought. Fuckers.

Yes, if you are of reduced mobility, blind/vision impaired and travelling alone, with a sighted companion or with a guide dog then you must advise Ryanair of your condition and/or special assistance requirements on the same day as booking. Please see below for further information.*

Please note:
A blind or vision impaired passenger who is accompanied by a sighted companion (on a one to one ratio) and requires no special assistance is not subject to the above safety limitation of 4 per flight, however they must advise Ryanair of their condition on the same day as booking.Online check-in facility is not available to vision impaired passengers travelling with a sighted companion.

Please note: Ryan Air, this is unbelievably fucking offensive...4 per flight, 4 per flight...4 what per flight?!?! Oh, you mean people, well fuck me you utter cunts why didn't you say so. What's that, you've already been taken to court over this? Sounds like someone needs to haul your sorry arses back there, wankers. Tosspots and wankers.


8/14/2007 05:20:00 pm BenefitScroungingScum 0 Comments

Even by my standards today has been a bit of a stunner...I've fallen off a kerb, fallen into and over things in two GP surgeries, tripped over and trodden on both cats at least twice each and temporarily mislaid my car keys. Ah well, it's still only 5pm, plenty of time yet to start breaking things!


Technological Wonders

8/13/2007 05:51:00 pm BenefitScroungingScum 2 Comments

We went after midnight to the beach to watch the Perseid meteor shower.

Despite having been daft enough to expect it would be like a Disney cartoon, it was one of the most truly incredible things I've ever seen in my life. I'd waited for Princess Fairy Toes to arrive back from his debauched weekend away during the evening, struggling to stay awake, despite having slept in the afternoon in anticipation. He arrived just before 12am, though not before his ex girlfriend Fruitrock arrived unexpectedly, placing an interesting spin on things as they've been all out to kill each other for the past six months.

We headed straight off, excited and not wanting to miss a moment of this opportunity, Princess Fairy Toes and Fruitrock carrying the blankets and water, my bag stuffed with all manner of horrifying junk food. As we got onto the beach Fruitrock pointed out to me the fire she'd previously thought had been built by our other friends and I had to be held up as I howled with laughter at her saying she thought it looked a little too far out to walk was the excess gas burning off on one of the rigs out to sea. There was however a small fire going a hundred metres or so away which we slowly made our way towards, only realising as we got there that it didn't belong to our friends but a random group of kids in their late teens. They invited us the sit with them so we figured it was as good a place as any to sit and watch the meteors.

I lay on my back on the blankets I'd brought and gazed up at the sky, distracted by the group of kids with the fire, by now giving off noxious fumes from the old cd's and games they were burning on it, brought specifically for that purpose. They told me it was because they were disaffected youth. Spoilt and over privileged little twats more like.

Fortunately after an hour or so the group of teenagers drifted away, meaning we didn't need to find somewhere else to go, and we damped down their fire and settled back to watch the most spectacular skies. I sent Him (who's in need of a blog name, so Big it is) a text saying that I was lying in the dunes where we'd sat watching the meteor shower start, wish you were here to share it thinking that his phone would be either switched off or on silent and thought no more about it.

It got ridiculously cold at about 2.30am and we decided to call it a night. I was so cold Princess Fairy Toes had to half drag half carry me the few metres to the hard sand, where I laughed at myself the entire way back as my hips and knees subluxed and dislocated in and out, causing me to stagger around wildly, wobbling like a weeble as I went. I wasn't laughing this morning though!

As we went back down the beach, only maybe a hundred metres, Princess Fairy Toes went on ahead, chasing after Fruitrock and another girl I didn't really know. I felt slightly nervous, but not properly concerned til I saw him disappear through the passageway from the beach to the road, carrying on despite my calling out to him. To get from the beach to the road is a passageway of a few metres, sloping up then down with two or three long, low steps on each side. It's nothing. Except I can't manage to walk through it on my own. Struggle to 'walk' through it with help. I need someone with me to lean on and to pull me up. And that someone had just disappeared out of sight without a second thought leaving me on a freezing cold beach at 3am. I felt vulnerable and scared. I couldn't hold myself upright properly. My hips and knees were giving out underneath me, and for all I was laughing out loud its simply a coping mechanism, not one that can make my body suddenly start working to order. One other person had straggled behind, a girl I've met a few times before, who upon seeing this immediately told me not to worry, she'd get me to the car. She'd had a fair amount to drink though, so with that and my wobbling we must've made a fine sight as she helped me and we weaved our way through the passage.

I woke up late this morning, having left my phone on silent to find a text from Big saying We never saw a meteor shower, wrong person. When I thought to check later on in the day I saw it had been received at 3.06am. It took me a little while to realise what he meant, and that he didn't get the nice romantic gesture I'd intended it to be. I sent a reply trying to explain some jumbled nonsense about knowing we'd not seen a meteor shower, but it was the dunes we'd been to and I'd wanted to share the experience with him, but with my ability to ramble, the limitations of sms and our history of misunderstanding when communicating this way, I suspect it's just made things worse. Especially as this follows of the heels of another more substantial misunderstanding from the previous day.
I tried to send an apology this evening but as I suspect I may have woken him up and given him the impression that I was trying to tell him about an experience I'd either had or was having with another man, well...I'm not surprised he's gone into his shell again. So much for the wonders of technology!


I am me

8/10/2007 08:27:00 pm BenefitScroungingScum 7 Comments

Today has been what my friends and I describe as one of my raggy doll days, and that in combination with some of the posts I've read recently over at the excellent Chewing the Fat has been making me think more about the language we use all the time, specifically though in relation to disability.

The title of my blog should be some indication to the way I view language, it is of course as EmmaK asked so early on in part ironic, but is also largely to do with the attitude I have towards negative language, that somehow, some part of me feels it vital to challenge all those negativities and make words usually considered to be shocking or derogatory insults into comfortable every day terms.

I am a cripple, a spaz, a spacker, a gimp, a muppet, a bendy freak, a genetic throwback, a raggy doll. I am a pixie, a gorgeous blonde, a sex kitten, a cherub with a devil's mind, a bendy girl, a bit of a hippie chick, an incisive mind. I am me.

What I am not and never will be is disabled. Sigh. Dis abled. Dis abled. Disconnected. Displaced. Disintegrated. DISTANT. I hate the word disabled. So why would I want to willingly use it about myself let alone every chose to think about myself that way? Don't get me wrong, if the situation demands it, I will use the D word to describe myself, have used it on this blog, but I hate it. Hate it, hate it, hate it. I only use it to enable other people. To give them something to understand. But it is not and never will be a term I would chose to use for myself. But those other words, words used to cause offence, still I know able to cause such offence for so many, they, they are the words I choose to describe myself. These are words with power to them, not the negative and to me oh so whiny preposition dis disabling by its very nature for any of these words, no these words have bite, they are good strong, colourful words to describe myself with. I am a cripple when in pain I struggle to walk, a spaz or a spacker for my clumsiness, my sheer inability to co-ordinate, a muppet for my daftness, my ability to forget or lose things at the drop of a hat, a raggy doll when I laugh and my muscles lose the ability to hold me up, causing me to drop to the floor in a hopeless helpless heap of giggles, a gimp when I am covered in bandages, a genetic throwback my whimsical wander back to times when humans were dead by the age of 30 and perhaps such unusual bodies those we with EDS have were of some evolutionary advantage, the bendy freak bit should be obvious by now. Really.

Not a single one of those words has any power to hurt me. I live in a world of sick warped humour, and it's a good place to be.



8/08/2007 10:46:00 am BenefitScroungingScum 0 Comments

Somewhere always in the back of my mind there is a nagging sense of underlying fear. From what I know this sense of fear is common to all those genuinely claiming state benefits. Today is not a particularly bad day, but not a particularly good day either, but for some reason the nagging sense of fear is stronger than usual.

My shoulder, taped into place by Princess Fairy Toes has remained in place overnight, but grumbles ominously whenever I try to move my arm, and already the tape is falling off. Really it should be held in place in a sling for a week, allowing whatever is grinding within the joint to heal, but that for me currently is an impossibility. Since the fuckwit social worker decided there was clearly no need for me to receive any support my body is crumbling under the strain. To wear a sling would throw my body further off balance, making anything and everything I do even more dangerous.

Earlier in the week I ordered a grocery delivery so I would only have to shop for a few basic, and light essentials over the next 10 days or so. Typically with such orders a few items were missing, not in stock, for most people I assume a minor irritation, but for someone in my position currently a major nightmare. The items missing were all wheat free bread products, and I am about to completely run out. This means I have no choice but to make the 10 minute drive to the nearest supermarket that produces this range and hope they have some in stock. I am afraid. I am afraid that my body is simply not going to manage the amount of effort required to wash, wash hair, dress, make breakfast, eat, drive, get from car to supermarket, find required food items, push the trolley, stand in the queue, pay, get back to the car, drive back home, get the shopping out of the car, it and myself into the house, and all without redislocating my left shoulder, let alone any of my other joints, like my knees or hips. I am afraid the supermarket will as is common not have any of the products in stock and I will have to order them and then return, something that has proved impossible to do by phone in the past.

I am afraid that this is August, and winter is yet to come.


Worth it..

8/06/2007 09:32:00 am BenefitScroungingScum 1 Comments

I awake to my shoulder screaming for attention. It's fully dislocated itself again and is refusing to reduce. I know of old there is no point in my seeking emergency medical attention as last time I did so even A&E were unable to reduce it for me. If it remains this way eventually I will be forced to make even more difficult decisions and somehow find the money from my benefits to pay out for specialist private physiotherapy, the NHS in its infinite wisdom having just discharged me from their physiotherapy services much to the reluctance of the actual physiotherapist as there is no room in the current NHS for patients requiring on going therapy for chronic problems unable to 'get better' for the endless reams of form filling targets.

This time unlike the last I happen to know what the trigger for such a substantial dislocation is. It's now been several months since social services decided despite the constant dislocations I experience and living alone with no family back up that there was no need for me to receive any care or support services from them and removed all the services and funding I'd received to that point. It won't shock anyone to hear my local authority are broke and going through a process of 'reviewing' all care packages whereby most people are ending up with if they are lucky vastly reduced packages and if not, nothing at all. I could complain, but only complain as there is no actual appeals process, but I simply cannot face the trauma and destruction that this would cause to my life to get back a service that was so substandard and at times abusive that I am as yet undecided.

So, several months of having to find ways to cope with the daily tasks the social worker adamantly refused to see how fragile and unstable joints would cause any problem with has predictably put massive strain on my body. I have been in some respects incredibly lucky, unlike the dark days before I was diagnosed I now have friends, a new and wondrous experience to me, friends who want to help for no other reason than they care for me as I for them, but of course there is a vast gulf between such support and that needed day to day. There's an even bigger gulf between that and what I will admit to needing but that is a different issue.

On Saturday night, I had as I mentioned a rare night out. It's now monday morning, and I've been unable to leave the house since then. I have to get the cat to the vet today, but I'm fortunate to go to a lovely vet practice where they come out to wherever I've parked and carry the cat into the building and later back out. Usually a neighbour assists at this end. The trip to the vet will be I suspect the only time I manage to leave the house today. It will also be exceedingly painful even with assistance. I'm still paying for my night out, for those few precious hours of pretending to be like everyone else, pretending not to be in so much pain, for smoking enough cannabis to allow me to be out with my friends, to sit on hard uncomfortable chairs, and even for a few joyous, blissful wonderful minutes to dance, stoned enough to be able to ignore the warning signs my body was giving me, yet enjoying far too much the simple joy of feeling the music flood through my body as I writhed to the beat, eyes closed, spinning ultra violet poi above my head in a mesmeric pattern.

It was worth it. I was only out for a few hours, danced for maybe 15 minutes at most, broken up throughout the night into smaller amounts, and for the last time had to be held up by my friend but it was worth it. It was worth the pain yesterday when I could feel my hips screaming at me. Worth the pain I can feel in my shoulder now as the bones grind and scrape over each other. Worth being unable to even walk out of the venue and having to be carried out by my friends my hips by that point so unstable I could not support my body. Worth the constant nagging fear of being spied upon by the DWP, that those few, rare short hours of freedom would trigger an investigation to remove benefits, ignoring the consequences those hours bring. Worth potentially not being able to leave the house for the rest of this week. Worth not being able to feed myself. Worth all that and more for a few minutes where I could forget and just be.


Attacks on disabled people are hate crimes, too

8/05/2007 09:19:00 pm BenefitScroungingScum 0 Comments

Steven Hoskin died after being tortured and then plunging from a viaduct - one of several horrific murders of disabled people in the UK.


Council ordered to pay for failures to arrange care

8/05/2007 09:12:00 pm BenefitScroungingScum 0 Comments

"A council is today told to pay a family compensation of almost £100,000 for failing to arrange suitable care for a disabled young woman, in a ruling that will sound alarm bells in town halls across the country."

"David Congdon, head of campaigns and policy at learning disability charity Mencap, said Ms Wright's case cast a welcome spotlight on a widespread problem. "It's sadly quite similar to others we come across involving people with quite complex needs where, incredible as it may seem in this day and age, councils have simply failed to plan ahead.""

"The ombudsman, Anne Seex, finds that the council made only two offers of residential placements, one of which had no downstairs toilet that Ms Wright could access. The other placement had been unable to answer questions about how it would meet her therapy needs."