It's neither nowt nor summat...

On typos…

nowtnorsummat — Tue, 10 Jan 2012 23:38:46 +0000

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…

nowtnorsummat — Mon, 09 Jan 2012 14:24:45 +0000

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?

nowtnorsummat — Thu, 29 Dec 2011 10:36:02 +0000

“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?

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.

If you wait long enough, everybody turns up…

nowtnorsummat — Tue, 22 Nov 2011 15:41:36 +0000

Noticed some people are landing on this Blog after searching for ‘Morgan Spurlock in Redcar’. As odd as that may sound, I can indeed confirm that MORGAN SPURLOCK CAME TO REDCAR!

I wonder if he came for a Lemon Top?

The Lemon Top. An ice-cream confection made of Pacitto's finest vanilla ice-cream topped with lemon sorbet

Just to make sure…

nowtnorsummat — Fri, 18 Nov 2011 17:10:39 +0000

…we’re all going to Tubby Hell in a Tubby Handcart http://www.guardian.co.uk/commentisfree/cifamerica/2011/nov/18/pizza-vegetable-congress-says-so

Cram me into a loo roll tube

nowtnorsummat — Fri, 18 Nov 2011 17:07:26 +0000

So, I have an injury. A proper injury. Yes, it’s the same one I blogged about previously; the one which has dogged me for most of this year. Anyway, yesterday evening I was booked in to have an MRI scan to see just what the heck is going on in there (other than a deranged little man with red-hot knives, intent on prising my knee apart).

I’ve had an MRI before. My MS was diagnosed that way when lesions Ed & Brian were first spotted. I hopped onto the platform & prepared to be engulfed. In. Out. In again. Hmm. ”There’s a problem’ says the radiographer, “You’re touching the side & there’s still 80mm to go. We can’t do it if you’re touching the side. The scanner might overheat.” ”But my legs are IN so can’t we do it anyway?” ”No, it won’t work until you’re in it properly.”

So home I went, angry & slightly humiliated. Whatever you may read about the MILLIONS of pounds the NHS is having to spend on things so that obese patients can be treated, trust me – I have seen NO EVIDENCE of this. My brand new & purpose built GP Surgery & local hospital offers seating WITH ARMS which have been manufactured to be precisely the same dimensions as a Budget Airline’s most budget-y seating. Comfort? That seems to have been ‘designed out’ wherever possible. Hospital beds, for example. Never those plumptious adjustable ones seen on tv but your bog standard steel framework & wafer-thin, plastic-encased mattress which, under my weight, may as well not exist. A few sheets of A4 sellotaped to the frame would be just as effective & ‘comfortable’. While I’m having a gripe let’s mention blood pressure cuffs, off-the-peg compression garments, quick-access-to-your-arse hospital gowns…

You’d think, seeing as we’re almost all ‘obese’ these days that there would be some evidence of the world making some adaptations, especially as it costing us all so much money. Apparently.

(Just to say that I’ve had Lymphoedema since I was a child – both legs – so a substantial part of my size is actually a deformity due to that. As opposed to pies.)

Also appearing in…

nowtnorsummat — Fri, 18 Nov 2011 16:39:30 +0000

http://tru-atmywitsend.blogspot.com/

I’ve started a Blog for more ‘frivolous’ things I enjoy; make-up, pretty things, kittens & all that stuff.

Please don’t think I’m getting all superficial or anything like that.

Normal misery shall continue unabated…

I shake like an incurable

nowtnorsummat — Tue, 18 Oct 2011 13:15:59 +0000

Wow. This blog reached the heights of almost 12000 views in one day thanks to my previous post! Thank you all for reading & sharing & going to the trouble of commenting. I’m glad that Caitlin’s article is now ‘out there’ but, as my Asperger’s Son pointed out yesterday, does this mean that Rupert Murdoch will now be out to get me?! I’m not too worried. I can take him AND I have a stick…

I also realised that this blog may appear to be a bit morose; poverty, illness, middle-age. That’s not really ‘me’ at all. Well, it IS insomuch as I AM poor, not in fabulous health & 45 years old. But it’s not ‘ME’. Me? I’d still laugh if my arse was on fire.

You can’t even change the colour of your front door

nowtnorsummat — Sat, 15 Oct 2011 12:38:41 +0000

I’m posting this from today’s Times because it deserves to be out there; not behind a paywall. Caitlin Moran usually tickles my funny bone but today she’s smashed right into my head; my past life, my current life. Reading this made me have a little cry because it’s simply so TRUE. The dead, leaden weight of poverty fits me like a pair of iron boots as I wade through the ocean of life, keeping me on the bottom & away from the air & blue sky. I lived a childhood of lentils & sheep’s heads, spoiled vegetables & bags of broken biscuits; black PE pumps instead of shoes & never owning a waterproof coat until I got a boy’s Snorkel Parka; a Christmas Compendium of games printed on paper & not a board – just the thing for an only child! Life got better, but I never really got rid of those iron boots & now they’re back with bells on thanks to MS & a future stretching out ahead of me dependent on Benefits. If I start sighing about it, the exhalation will last all day so please read this & think. You’ll either identify with it, as I did, or realise how tough things are for some people.

The Poverty Trap by Caitlin Moran (The Times 15/10/11)

‘There is one massive difference between being rich and being poor, and it is this: when you are poor, you feel heavy’

We’ve recently heard a lot about the gulf between the rich and the poor – the difference between those with money, and those without.

Well, I’ve been poor and I’ve been rich. When I was poor, I knew I was poor because we lived on benefits, slept on mattresses on the floor, and would share a Mars Bar between ten for pudding.

Now I’m rich, I know I’m rich because I’ve got underfloor heating and could afford to eat out at Pizza Express up to three times a week, if I so chose. I’m basically living the life of a billionaire. I am loaded.

So, having been a rich person and a poor person, what I notice is how similar they both are, really. There’s not that much difference at all. Everyone cheerfully plays the system they find themselves in.

In Wolverhampton, when you needed a dodgy MOT for the car, an uncle’s mate would be given a tenner “for a pint”, and an exhaust pipe would magically appear out of somewhere – to the ultimate financial detriment of the garage it had been lifted from, but hey-ho.

Now I’m in London, friends of friends recommend good accountants who will “sort out” your VAT problem for a pint-equivalent fee – to the ultimate economic detriment of the country, but hey-ho.

We’re all just monkeys using sticks to get grubs out of logs, really. However. There is one, massive difference between being rich and being poor, and it is this: when you are poor, you feel heavy. Heavy like your limbs are filled with water. Perhaps it is rainwater – there is a lot more rain in your life, when you are poor. Rain that can’t be escaped in a cab. Rain that has to be stood in, until the bus comes. Rain that gets into cheap shoes and coats, and through old windows – often followed by cold, and then mildew. A little bit damp, a little bit dirty, a little bit cold – you are never at your best, or ready to shine. You always need something to pep you up: sugar, a cigarette, a new fast song on the radio.

But the heaviness is not really, of course, from the rain. The heaviness comes from the sclerosis of being broke. Because when you’re poor, nothing ever changes. Every idea you have for moving things on is quashed through there never being any money. You dream of a house with sky-blue walls; wearing a coat with red buttons; going out on Saturday and walking by a river. Instead, you see the same crack in the same wall, push-start the same car down the same hill, and nothing ever changes, except for the worse: the things you originally had are now slowly wearing out – breaking under your fingertips, and left unreplaced.

This has the effect of making your limbs feel heavy, like you’re perpetually slightly drowning. You’re dragging ten years of non-progress behind you like a wheel-less cart. Perhaps there’s something out there you would be superlatively good at – something that would give you so much joy, you feel like you are flying. But you’ll never find out: the world is a shop and it is closed to your empty pockets, and you are standing still, heavy, in the dead centre of your life. You look around, and start to suspect you might not exist. After all, you appear not to be able to make an impression on the world – you can’t even change the colour of your front door. Twenty-six years, now; forty-two, and you’ve never even been to your neighbouring town – it’s too far away. And so you sit. You sit still. Because your limbs are so heavy. They are full of rain.

If you’ve never been poor, I don’t think you could imagine what it’s like – simply because of the timescale. You could envision a day, maybe, or a year – but not a lifetime. Not generations of it, passed down like drizzle, or a blindness. Not how, if kids from a poor background achieve something, it’s while dragging this weight behind them. How it takes ten times the effort to get anywhere from a bad postcode.

My children can’t imagine it. They love to play at their Sylvanian Family rabbits being “poor”: they love the ingenuity of a sofa turning into a bed for five rabbits; of having only one thing to wear. “It’s all cosy,” they say. “It’s all – little.”

I can see how if you were – say – a coalition government consisting of public school kids and millionaires, you could convince yourself that the poor are snug in their Sylvanian caravans. That all they need to bridge the “gulf” between them and the rich is for things to be less cosy. That making their life harder – withdrawing benefits and council housing – incentivises them in a way similarly incentivising the wealthy – by imposing a higher tax rate – would apparently never work.

But the last thing anyone poor needs is for things to be harder. These limbs are full to bursting.

caitlin.moran@thetimes.co.uk

Not quite Gazza but…

nowtnorsummat — Fri, 19 Aug 2011 14:15:01 +0000

I have what can only be described as a SPORTING INJURY! Not quite your Cruciate Ligament malarkey but I do have a Meniscal Tear which explains the past three months of knee instability & waves of agony. Of course I didn’t get this injury doing any actual SPORT, but I did manage to recreate the ‘firmly planted foot with weight-bearing plus lateral twisting’ in the comfort of my own home & within the confines of my MS doddery walking technique. Quite the achievement really.

When I first started needing support with walking I used crutches which, as I was walking quite far in them, gave me TENNIS ELBOW! See, I’ve got a theme going; non-sporty sports injuries!

In the long-distant past I did actually DO sports & have had some actual sports injuries. There was the time I had my chin split open by a hockey stick (very bloody & my own fault for being such a nippy defender & getting the ball from the girl who was just taking a golf swing at it), the blackened arm (due to a miscalculated dive into the swimming pool which resulted in said arm slipping behind the support bar which ran round the pool) and the black eye thanks to catching a cricket ball in the outfield WITH MY EYE SOCKET. I was also stung on the arse by a bee when playing Netball but that doesn’t really count.

So, despite my neurological state, it’s interesting to see that I’m as accident/injury-prone as ever. One of the earliest signs that things were going awry with me became dazzlingly apparent when I visited New Zealand in 2000. I was determined to see as much of the place as possible both with my friend, who I based myself with, & on my own. On my own ON THE OTHER SIDE OF THE WORLD! It still thrills me that I went! Anyhoo, everywhere I went I FELL OVER. I fell UP the escalator in Auckland, grabbing a man’s crotch to save myself (I did apologise!), down the Hostel stairs in Picton, into the surf at Hot Water Beach (very gritty sand – looked like I’d flayed my skin on an asphalt road!) & into a thermal pool in Rotorua.

You’d think that such a spate of accidents would send a soul running to their GP but,as I’ve always been a bit clumsy & accident prone, I simply thought my ineptitude was having some sort of renaissance. I had the childhood reputation of being able to trip over the pattern on the carpet! Black & white birthday photographs reveal an ever-present elastoplast on my knee along with changing hairstyles & vanishing baby teeth.

Forty years later I’m nothing if not consistent!