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Showing posts from June, 2017

Strong and stable, fairy fable...

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Theresa May, Theresa May, What the fuck is left to say? Strong and stable, strong and stable, Turns out that was just a fable Now we've properly crashed and burned The joke's on you, the tables turned YOU'RE going to have to deal with it, Now that we're bollock deep in shit Your arrogance is pretty vile, But head-up-arse is just your style We really should feel sorry for you Since clusterfuck's just what you do You didn't even cost your plans Yet had a go when Jezza had And let's not go there on debate day No-show? Not cool at all Ms May. The decent thing would be step down But you intend to stick around Why exactly won't you bail? When this was such an epic fail Stubborn, greedy, power-crazed? It's left the country quite amazed The Tories keeping super schtum While Labour level up- game on I'm sure deep down there's something good I'm sure you'd rewind if you could But now you can't; and it's

Bluesday Wednesday

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On Tuesday, B's carer (who is an all round legend at all things B) brought him back early from after-school respite because his peg had split. A peg (stands for percutaneous endoscopic gastrostomy, if you're interested) is a tube that goes directly into a child's tummy, to allow parents and carers to administer meds and feed. We initially had one fitted a couple of years back when B's seizures were crazy and we couldn't medicate him orally- at which point he was having upwards of 70 seizures daily. Poor kid was totally non-functional and lost a lot of previously gained skills. The epilepsy B is affected by as a result of his chromosome condition is life threatening; he has many different types of seizure and because of this it's often very difficult to find a mix of meds that fully controls it. The peg has literally been a lifesaver for him- we're now able to medicate and instead of 70+ seizures daily we now typically see a handful of small ones, which h

Tory Stories (ii)

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Things that give me the rage: People who leave one straggly sheet of toilet paper on the roll to evade replacement responsibility. You people are worse than Satan. Tory policy on disability. This current government have turned the system upside down to try and shake out the fakers, meanwhile making life fairly hellish for the 99.3% (fact check  here ) who claim benefits entirely genuinely. No one wants to be disabled for fuck's sake. No one chooses to rely on a system not fit for purpose. No one enjoys  being subjected to copious amounts of admin and dehumanising, anxiety inducing assessments by unfamiliar professionals to gleefully reap their extravagant reward of £21.80 (lower rate), or £82.30 (highest rate) per week. Try living on that and see how far you get. Rent? Forget it. You're screwed. Add to that the constant stigmatisation of the media and wider society - oh, and the fact you actually have to live with a chronic disability in a culture where human worth is so