The Little Red Hen

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You know that story right?  The little red hen who asks the farmyard for help but gets nowt until the spoils are ready to enjoy?  Sometimes I think that’s me that is.  Need a job doing?  Just pile it on my shoulders!

What’s brought this on?  I’m sitting here, numb-arsed & shaky of hands after typing 3 out of 4 reports from the Scrutiny work I’m doing for my Housing Association.  I’ve done all the training (apart from that half day when I had a funny turn & had the Sean Connery voice), I contribute in every session, I think of questions, I ask questions, I organise the team, I pay attention, I take the notes, I ask the supplementaries &, seemingly, I do the typing now too.

It’s been a massive leap for me to trust the team to do as good a job as I would do & I know that makes me sound like a demented control-freak perfectionist.  I sort of am if I’m honest.  I know the job’s a good ‘un if I’ve had plenty to do with it.  I’m learning to share the load but, really – have you seen some of these people?..

That’s a little unfair as the majority of them are lovely, hard-working folk who are learning something very new & doing their best.  That doesn’t mean that just because I can, I should do all the extras!  I’m actually terrified of being shown up as incompetent, unprofessional, half-arsed or otherwise a bit shite by someone who isn’t putting as much effort as I am into this.

In the meantime I’ve spent the afternoon spending more time on typos than typing (yes I KNOW I said I’d just leave ’em but this was WORK!) & I’m spent for the day.  One more to do tomorrow & I’ll be practising saying no* for next time… *piss off & do it yourself.

Here’s an example of the kind of hard graft & detailed note-taking I make;

Image

If you think it…

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…it will come!  Not everything of course.  Not a bazillion quid or The World’s Strongest Man wanting to carry you around so you don’t wear your feet out.  Some things though.  Things like FINALLY GETTING AN APPOINTMENT WITH THE ORTHOPAEDIC SURGEON!

So yes, I will finally get to put may case for killing my Bastard Knee & replacing it with Steve Austin’s spare Bionic Leg.  It’s not a foregone conclusion that I’ll even be taken seriously.  I have contraindications coming out of my arse (not literally) like being fat, having significant Lymphoedema & the associated infection risk, the bloody MS…  I know; I’m hardly straightforward.  This should NEVER make me less deserving of treatment though.  Hell, by the time I see the Doc I’ll have been in agony for almost a year.  A year which has endeavoured to put the total kibosh on my ‘keeping mobile for as long as humanly possible’ plans.  If I can’t walk due to the MS then I really WILL need The World’s Strongest Man to place me gingerly on the lav…  So, I can now put my arguments for surgery on paper &, hopefully, anticipate & counter any arguments against.  I don’t particularly want surgery.  I do want not to need it in the first place, but we’re way beyond that.

Time for Tramadol.  Come to mama as your days may indeed be numbered, my little capsule pals…

I’m still here….

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Despite appearances to the contrary, I AM still knocking about, sometimes quite literally.  I don’t know why I’ve abandoned WordPress for so long.  God knows, I’m rarely lost for words & have plenty to moan about!

I see people are still finding the @CaitlinMoran story I reproduced here & that’s a good thing.  In my efforts to break out of the illusion of Social Housing ‘choice’, I have joined up to my own housing Association’s Scrutiny Panel & have been in training for that for months now.  Our first project is nearing its end &, dear me, I’ve had to use the remnants of my People Skills to get through it.  It is testament to my self control that I really only felt punchy a couple of times…

I’m sure I’ll share more of that with you – within the remit of the Privacy Agreement of course!

The knee I’ve previously mentioned (now titled the Bastard Knee) is STILL waiting to be seen to by someone with a white coat & power tools.  The MRI revealed a litany of denuded this & arthritic that & general knackered-ness.  If only it could see the agony too.  It’s me & Tramadol all the way baby!

Oh, & I got a tattoo…

Can you tell what it is yet?

On typos…

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I’ve made a decision.  On reading through various Tweets & Blog posts & comments I’m noticing that my typos & numb hands & general brain mush are happening, not only, more frequently but more & more unnoticed by me.  Despite reading through, I seem to be incapable of spotting mistakes which would generally horrify me!

I am, in the words of Spud in Trainspotting, a bit of a perfectionist you see.  

Now all of this could distress me, depress me & piss me off BUT, especially on here, I intend to embrace it.  Not because I don’t know any better – my spelling is exemplary – but because it serves as a record of how my MS is affecting me; physically & cognitively.  

MS isn’t just about walking funny or being in a wheelchair.  It’s about pain, fatigue, ‘altered sensation*’ & impaired concentration.  I can’t deny it & I can’t fight it but I can accept it.

*Altered Sensation is a term as nebulous as saying that a deep, dark cave has ‘altered light’!

So, if you spot a typo or occasional incoherence on here, let it slide.  Just think “oh Trudes is having a bit of an off day”.  I may have typed something in haste or with passion or, most likely, have a bit of Cog Fog*

*just learned that one today! Sounds less unpleasant than Brain Death.

I’m Spartacus…

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Sometimes, indeed increasingly often, you simply cannot rely on those who should know better to do the right thing.  People in power are inherently selfish & only seem to show ‘altruism’ to those who a) agree with them & b) bung them a few million quid for their Political Party Coffers; basically those who don’t really need or deserve a leg up.  Today, the 9th of January 2012, is really quite momentous in terms of People Power; The Big Society.  Today sees the publication of a report called Responsible Reform which exposes just how a government ‘consultation’ on something really incredibly important is a complete sham.  Our Leaders want to save money to reduce our Economy’s deficit which is not an unreasonable thing to do.  Tax avoidance reduces the Treasury Budget by BILLIONS so yeah, let’s start with that.  Actually, far from starting with the big bucks, it’s the little guy who’s getting it.  You can take £1,000,000 from 1 person or you can take £1 from 1,000,000 people; people for whom that £1 might make the difference in being able to eat today or to travel to work.  In face, let’s make it more than £1 per person & let the people we’re taking it from be DISABLED!  Crikey!  What an absolute wheeze…

Now, like any Democracy, we can’t have folk running around doing whatever they like so we have ‘Consultations’ about how these savings can be made & what impact that will make on both the Economy & those who are being robbed who are negatively financially affected.  These Consultations have rules about the length of time  needed to gather opinions & facts & statistics.  Rules which, seemingly, are now ‘optional’.

The result of these Consultations are used willy nilly wisely & with gravitas to create government Policy & Law.  Well, you’d think so eh?

So, back to today & Responsible Reform; http://dlahelpgroup.com/downloads/Responsible%20Reform.pdf  If you believe in democracy & altruism & decency & how, should you or your loved ones become disabled, this country will help care for you, then read this.  Read it until it sears into your brain.  I certainly didn’t know that I would be affected by Progressive MS or give birth to an Autistic child and you certainly don’t know if or when Disability might affect you in some way.

What you CAN know now is that this Government will not care.  It will doubt you & sneer at you.  The Media will label you & point & laugh & call you a LIAR; a SCROUNGER; a CHEAT.  It has taken a group of Disabled Campaigners to do the job of a worthwhile Opposition.  People who are themselves at the mercy of these decisions.  Decisions made, as shown in the report, DESPITE the majority of those ‘consulted’ not agreeing to them AT ALL.

Be outraged by this.  Be angry.  For all our sakes, DO something about it; Tweet about it, Facebook it, tell your MP or any member of the House of Lords.  Don’t let this happen or, once day, it could be you Spartacus…

#spartacusreport

Ne regrette rien?

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“It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.”

POW!  This just hit me like a brick in the face.  The Top Five Regrets of the Dying; obviously never going to be particularly cheerful reading. http://kellyoxford.tumblr.com/post/14958669440/nurse-reveals-top-5-regrets-of-the-dying

No.1, the one about unfulfilled dreams, made my mouth dry out & a lump appear in my throat.  It talks about health you see.  Health & how, if you’re lucky, it is only at the end of your life that it really cocks up.  Now I’m not one for dwelling on the midden of shit which illustrates much of my life but, every now & again, something crops up to remind me; to poke me right in the eye and, today, this article was it.  It has fleetingly made me realise that my Progressive MS is like some sort of slow death, each tiny freedom & achievement being slowly eroded.  This isn’t a good way to think.  I generally allow myself an ‘Annual Review’ of what’s still there, what’s gone & what I need to get through the next 12 months without ending up housebound in a puddle of my own pee.  It bears repeating that I’m 45 years old so have DECADES of this sort of thing to contemplate.

2012 looks like it’s going to be a BAD year for Disabled people.  The Coalition* (*Tory) government seem hell-bent on a) stigmatising & b) robbing the disabled blind (if they’re not already – see, a pun?!).  You’d think, seeing as I’m part of the ‘system’ that I too would know of HUNDREDS of people getting Rolls Royces in exchange for their ‘bad back’ or 3 holidays a year for their ADHD toddler.  The thing is I don’t know anybody who does that.  Not one.  I DO see plenty of able-bodied folk using Disabled Parking bays because they’re ‘just waiting’ and many, many other Disabled folk living incredibly limited lives, fearful of how they’re targeted to ‘save the economy’ & perceived as ‘scroungers’.  At my local MS Therapy Centre there are people there who are not only coping with MS but have suffered cancers & other issues you’d think would have the decency to leave them alone as they have enough to cope with.  That’s the thing with long-term illnesses you see; it doesn’t excuse you in any way from getting other diseases.  Why me?  Why not?

“It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.”

Enjoy your freedoms during 2012 as you never know when you might lose your health.  While you’re at it, stand up for Disabled People.  Sign petitions, make your voice heard, don’t park in their bays, be considerate, point out that the right-wing press are demonising them & complain, follow campaigners* on Twitter to understand the truth of what’s actually happening.  Basically just act like you hope people would if the roles were reversed.

* like @bendygirl @suey2y @BrokenofBritain @mrsnickyclark  for starters!

Go into this new year as a person of understanding & compassion.  Do that & you’re ahead of those running our country already.