Breaking Bad

I'm having one of those days. Well, one of those weeks is probably more like it, but I don't want to consider how far this current path of destruction goes back. So, day...week, whatever. Everything I touch breaks, falls over or stops working so I'm happy to call it quits on the time factor in case I break that too. Even BendyCat is affected, I've just managed to elbow her in the head trying to put my jumper on.

I've actually been good and remained on my arse for most of today. I have an appointment at the bendy clinic  in Leeds with Professor Bird on Thursday and I'm starting to panic about being able to get there. GangstaGuy is away that day and Roland on nights. Pretty much everyone else is either in work, education or not well enough themselves. I'd ask my pot dealer but I have this old fashioned notion that people should be sober when they drive a motor vehicle. Usually I drive myself but my joints seem set on a path of separation and are stubbornly refusing any form of couples therapy. 

Friday night was supposed to be a night of passion. It involved screaming but that was pretty much it as far as passion went. I think I dislocated my knee, probably the femur part rather than patella part but beyond something going 'pop' I couldn't say. Things go pop all day and all night so I try not to pay too much attention. Whatever the source of popping not long after I was howling. Now, those who know me know my usual reaction to a dislocation is to scream something along the lines of 'fucking fuck fuck' then go back to whatever it was I was doing. It is absolutely not typical for the screaming to continue along the path to sobbing. I'm not big on crying. It always gives me a headache. Besides, swearing is good for pain. Science says so

GangstaGuy was a bit distressed. He tried to hide it but I could tell by his frequent, hopeful suggestions we go to hospital. The pain was so bad I did consider that option myself but decided I'd rather be in pain on a comfortable couch with supplies of tea, chocolate and weed than in pain in an uncomfortable tea, chocolate and weed free hospital. After all, what was the hospital going to do that I couldn't myself? Prod it a bit, hum and haw, maybe throw in an x-ray for good measure then suggest some form of support, anti inflammatories, crutches and a rapid referral to orthopaedics. It's the knee of the hip which got so put out when I misjudged a step back in March. How can it be that long ago? What happened to April? 


So that was Friday night. I 'broke' my knee. 


On Saturday morning I broke GangstaGuy's sink. Cracked clean through. Fortunately not with my head as I have not recovered from having to explain to a bemused A&E doctor how I managed to crack the back of my head on the underside of a sink many years ago. This sink break was caused by my 'oh so careful' balancing of a candle holder. The 'oh so careful' bendy version is never quite the same as anyone else's 'oh so careful' so now GangstaGuy needs a new sink. I was mortified. Breaking other people's possessions is far less acceptable than breaking my own, though they all end in the same place-people who aren't me fixing them. 



Lies, Damned Lies and Semantics

A guest post from Elena Newley. You can follow Elena on twitter as @autismwales or read her blog Planet Mouret Films




Lies, Damned Lies and Semantics....

So, ok, here we are. We've had the election and now we appear to have no government at all! I don't know about anyone else but I am already getting confused between the notions of 'pacts' and 'understandings'. It would seem they are very different.

I've just watched Nick Clegg giving an extremely cleverly worded statement. As a student of semantics, I listened very hard to all the words and tried not to focus too much on the overall meaning! Unpicking that statement in a linguistic way, seems to indicate to me that he's playing a very clever, if somewhat risky, game. But I can very well understand why he is doing that...

The Press are already running with “Clegg offers first refusal to Cameron” straplines, followed by the type of sub-editing lines we've become used to in this Murdoch-infested day and age, of “Gordon is pushed out of the picture”. I suspect we're all so tired now having stayed up all night imagining we might find out who had actually won, that many of us may be at the point of taking these announcements at face value. If so, could I please sound a rather loud note of caution?

The press seem to unilaterally believe that Clegg stated, during the election campaign, that he would be willing to form a government with whichever Party won the most seats, based on some sort of 'principal of fairness'. However, I would very strongly argue that he has never, at any point, actually said that. What Clegg actually said was that he thought the Party with the most seats should “try” to form some sort of government. That's very different to saying the Tories should run the country or that he really believes that they have any public mandate to do so.

And now, this morning, Clegg has produced an equally triangulated statement in which he appears to be starting the dating process with the Tories. His statement sounded a little like he was up for a chaperoned meeting with David Cameron with a view to a possible engagement if his parents agreed!

However, if you unpack his statement, what he actually appears to be saying is that he is going to stand by his pre-election promise (you know, the one he never actually made!) that he felt the Party with the most seats had the right to get first go at forming a government and that the Liberal Democrats would listen to anything Cameron had to say so long as … and here comes the zinger... the Conservatives sought to form a Government which was in the national interest. Oh, how I love words...

Still with me? Good!

So, clever old Clegg has said everything and nothing all in one statement. Hmm, perhaps he's not offering as much of a 'change' as we were led to believe!

The point being, for those of you who haven't lost the will to live and are still reading this, he's really saying that yes, David Cameron is welcome to begin courting him but ONLY on the understanding there's no kissing on the first date! Well, ok, that's not exactly what he's saying but you take my point? The real point in Clegg's statement was that he wants to be seen to be playing the game, abiding by the country's wishes (and if he knows what the country's wishes ARE, he's one step ahead of me that's for sure!) in as much as he's willing to listen to Cameron if, and very probably only if, Cameron will agree to his previous four demands which, if my memory serves me correctly, centered on electoral reform, budget reform, environmental issues and something else which escapes me at the moment!

Ok, so here we go, Clegg could concievably work with Cameron if perhaps Cameron agreed to have a public referendum on the idea of electoral reform (for “electoral reform” read proportional representation!) but I just can't see how the Tories could agree to this. If they DID agree, then they would really have no option but to abide by the outcome of any referendum and, I don't know what all of you think, but my own feeling is that if we can't even elect a Government, then it's doubtful we're going to come up with the 'right' answer on electoral reform. When I say 'the right answer' – of course, I mean the 'right' answer by David Cameron's standards, not by ours! We are all going to have to learn that what WE want really doesn't come into any of it too much!

And, be warned, referendums have a nasty habit of coming back and biting us on the metaphorical rears! Referendums have a fairly impressive past history of having to be repeated endlessly until the public (and that's 'us'!) finally give the 'right' answer, viz a vis the Irish Republic and the various referendum's on the Lisbon Treaty (which went from a resounding 'No' vote in the beginning, to a somewhat exhausted 'Yes' vote before it was accepted by the Taoiseach as being the 'right answer'!)

If you're lost in this Westminister-led miasmic triangulation – join the club!

But just remember... never, never, never, take statements at face value. Yes, Clegg may very well want to appear to be 'doing the right thing' but, before we let ourselves get too carried away or adoring of the marvellous Nick, maybe we should all ask ourselves what 'the right thing' actually is?

What do YOU want? A minority Tory or Labour government who rule only with Liberal Democrat abstentions? A coalition government of the type of the last Lib-Lab pact whereby the Lib Dem's and the Tories or Labour actully FORM a government and actively SUPPORT each other? They are very definitely two very different things. One is a form of parliamentary active consent and the other is a kind of parliament two-tin-cans-and-pieces-of-string, Heath-Robinson type of affair which really only has one inevitable outcome; another General Election within the next few months.

The problem is, I cannot, for the life of me, see how Clegg COULD govern actively with the Tories on many of the major issues, the budget reforms being one of the most obvious areas of disagreement. Could Clegg agree that the Lib Dem's would simply abstain and thereby allow Tory policy through Parliament? He could but only if he gains some fairly major concessions from Cameron, electoral reform being the most obvious thing there. Personally, I just can't see Cameron being able to persuade his own Party of that, let alone anyone else. And it's salient to note that Clegg was seemingly very clear whenever he talked about his demand for electoral reform prior to the election, I didn't hear any 'let's try' in those statements, they were categorical and definite, he would demand electoral reform if there was a hung parliament before he would agree to work with any Party.

So, there you have it, or quite possibly you don't!

So just be warned, we are all now in for an absolute bombardment of rolling news programmes featuring 'experts' on British consitutional law and tired-looking politicians arguing their respective corners, BUT if you manage to stay awake long enough to actually listen to anything any of them say …. just remember … it's not WHAT they say, it's HOW they SAY it that matters.

Look at the words, look at the words, look at the words ….


Thanks Elena!

Happy Meals

For some reason all my hospital appointments appear like a rash across the same part of the calendar every year, so yesterday saw me head off to Freak Clinic and later to my GP. I can't quite work out where the year since last appointment has gone, but fortunately this time the parking situation was slightly better and I didn't need to accost any builders to help me up stairs. Probably why my blood pressure was considerably more healthy this time. 


As I'd seen the consultant last year I saw the registrar this time. As Ehlers Danlos Syndrome is a rare condition I believe those of us with it have a responsibility to allow medical professionals to learn from us. It may not always be what is in our best interests as individuals but it is in our overall best interests. Although it is too late to rectify the physical and psychological damage done to those of us only diagnosed very late in life, it's not too late to stop that happening to more young people. The registrar was lovely and spoke English to a far higher standard than many of our native speakers, but he also shared the kind of indecipherable accent common to many of our native speakers so I found it rather difficult to understand him. The harder my body is having to work to get me around the harder I find it to take in information, my brain is too busy concentrating on sit up, move forwards, stay upright, breathe dammit, breathe, to focus on anything more complex. The first thing to go tends to be my ability to comprehend so add in a strong accent and all bets are off. I'm not sure if the overly energetic concentration skills are the reason I've developed another ptosis but the registrar was the second person to point it out, and the second to notice I can't tell my right from left. Perhaps that's why I had to donate another armful of blood, but that thyroid function test several people suggested a few months ago is finally being done. I'm sure this is all just part of the relapsing remitting part of EDS though. 

Part consolation prize for having reached the weight of 50kgs, heavier than I've ever been, and part only thing I could think of to stop the fatigued muscle shaking I went to McDonalds on the way home. The real prize was the toy lightsaber I got in my Happy Meal. All kinds of awesome. Who says women aren't easily pleased? Well, this one anyway. 


Then it was home for a few hours before heading off to see lovely GP. I know. You're so jealous of the excitement of my life you just can't contain your envy. I get that way myself. If it helps I became near homicidal when one of my neighbours woke me from a much needed nap about 30 seconds after I'd fallen asleep which meant that was the end of that. I could've cried. 


Usually I'm a bit more emotionally robust* but withdrawal is really dragging me down at the moment. I spend lots of time fantasising about possible ways of getting inside my skin to scratch the terrible Oxycontin induced pain in the fascia. At least I think it's Oxycontin induced...it's quite different from the kind of pain produced by multiple spinal and rib subluxations which for some reason I'm having as soon as I reduce the last set at the moment. Really envious now aren't you! 


The consulting rooms at the new GP practice are upstairs, accessed by a flight of stairs for most and a supposedly DDA compliant lift for others. As I went towards the lift one of the other patients asked why I was using it as I looked so fit. I think she thought I didn't know where the stairs were as she was mortified when she realised I wasn't able to use the stairs. It always amuses me how instinctively people equate slim with fit. Lovely GP is fortunately more switched on about my abilities as she came out of her consulting room to find me, knowing full well the delay meant I would be stuck in the lift. I was...sort of halfway up from the waiting room, feeling a right muppet as everyone on the ground floor looked at my legs through the glass door and lovely GP tried to figure out the problem from the first floor. The problem was that my fingers just aren't strong enough to keep the lift button fully depressed and it must have some safety shut off feature if the button is pressed intermittently. Really annoyingly it's impossible to press the button with the side or heel of your hand as there's a 'safety' rail in the way so I confidently predict more 'stuck in the lift' moments in my future. 

I needed to get some 5mg tablets of Oxynorm prescribed ready to take the next step down in the withdrawal process and some Co-codamol, a put on prescription as it's expensive to buy on a frequent basis and only the lowest dosage of codeine is available over the counter. We had a bit of a chat about whether there are any medications which can help ameliorate the side effects of withdrawal but other than diazepam there aren't. Lovely GP is quite happy for me to use diazepam for a couple of days each time I drop the dosage but agrees it's less than ideal considering it makes me even more floppy and carries such a potential for dependancy itself. Fortunately a fellow blogger explained to me how to make tea from cannabis leaves, which is excellent both for improving circulation and sleep. It's also a more socially acceptable way of consuming cannabis than smoking a pipe in the middle of the day, and happily cheap as most people consider the leaves of the plant useless. The only downside is that you need to find someone who is growing their own plants, but if as I have, you can do that then they'll be only too happy to donate the leaves as they aren't a part of the plant which can be smoked.  That, and be prepared to fall asleep for several hours, which with any luck is what I'll be doing before too long...





















*I did only say a bit.





Bog Off! Exhibit 23-Your M&S

Sent in by BSS reader and Bog Off fan* Nemonie this Bog Off features the accessible loo in Marks & Spencer at Teeside retail park, near Middlesborough. As you can see they have tied up the help cord ever so helpfully out of the way. They have also placed a chair in the way at the side of the loo, again presumably out of a misguided sense of helpfulness. 

M&S pride themselves on their customer service so come on Marks and Sparks, we expect you to lead the way in excellent facilities not lag behind. 





*My very own fan....how exciting!

What's the point in making vows you're never going to keep?*

Yesterday was the 4th annual Blogging Against Disablism Day, hosted by it's creator The Goldfish. In typical fashion I am a day late. I am claiming the extra day as a 'reasonable adjustment' under the Disability Discrimination Act. I'm confident of success as it's a dual claim on behalf of myself and the hamster which lives in my computer and makes it work. The hamster was buckling under the strain of a clogged hard drive and refusing to be evicted virus, so felt life was no longer worth living and booked it's flight to Switzerland. After some serious surgery and time in intensive care the hamster is still poorly but feels life is now worth living and has given me it's permission to apply for a care package and cancel the Dignitas trip. 

When I've not been busy persuading the computer hamster that suicide is actually painful, I've also been wondering what I wanted to say about disablism; other than it's a rather cool internet invented word. It is though isn't it? What's less cool is that a bunch of cripples on the internet had to come up with our own word for the discrimination faced by disabled people every day because disablism is so far off the radar for most people that it didn't even have a proper 'politically correct' name. No wonder disablism is still struggling to take it's proper place amongst the other discriminisms. And yes, I did just make that word up too. I'm on a roll here. Well, I would be if the provision of wheelchairs on the NHS wasn't in and of itself disablist, but as it is you'll just have to imagine the rolling bit.

Being disabled is hard, not so much down to the obvious reasons such as physical limitations or mental health struggles; though they should be challenging enough, the invisible reasons are the really tough parts. It's one thing to have a poorly leg but quite another to be told by the world that that poorly leg makes you a lesser person, a person who can't go the same places as other people, not because you have a poorly leg but because those places don't see why they should enable poorly legged people to access them. There is a certain look which crosses the faces of the able  when the differently able speak of the way the world treats them. A look which says you are over reacting, over sensitive, it's not as bad as you say, and after all, you are worth less than  the able so you should satisfy yourself with what you have and be grateful for the concessions the able make for you. 


And you know what? They're right, it's not as bad as we say. Actually, it's far, far worse. Just ask the wheelchair user refused access to a flight because he couldn't climb the stairs, even after he offered to use his arms to climb them; the mother who felt her only option in life was to end life for herself and her daughter, that death was the only way she could ensure the safety of her child; the man kept as a slave and tortured for his disability benefits; or the former marine** blown up in the service of his country then told his prosthetic leg would give him an unfair advantage.



*With apologies to Frank Turner for the blatant title song lyric theft
** Discussion about accusations of 'advantage' start at 02mins12seconds