Category Archives: Daily Life

Today’s Blog Is Brought To You By Letters, D, W and P

alloDWP. Brown envelopes.

Guaranteed to make any person with MS angry and anxious.

Since receiving Disability Living Allowance when I was diagnosed with MS, I now have to move to a Personal Independence Payment (which sounds enticingly exciting and intrepid?).

Well, it’s as far from independence as I can fathom.

My own personal case to one side (one I am prepared to fight, and fight hard if necessary), let me just ask, ‘Is MS Curable?’ The DWP seems to think so. For every person who has been or is still on a lifetime award with DLA (and rightly so), you now have to prove you have MS?

MS. Is. Incurable. Incurable.

Why on earth should we have to prove MS is … incurable?

Disability is great at making us invisible. We stay at home, through illness, relapses and fatigue. When we do go out, we are faced with hostility and abuse. How dare you have a blue badge? Move out the way, you’re slowing me down. You’re not working as hard as you should.

And this is the epitome of rendering us utterly out of sight (where we should be?), stuck at home, beset by social isolation and ever-increasing disability. Well done, DWP.

I live alone, now The Teenager is at University. Of course, all my child-related benefits have gone. However, as any parent with Uni-aged children know, you don’t suddenly stop paying anything at all towards their upkeep. Plus, University is 30 weeks of the year. The other 20 are invariably spent Chez Parent (in my case, the only parent, my ex-husband not being in the picture for this). The expense, in part,  remains.

And you cross that hurdle. And as the only person in the household, you trim your cloth according to your means. You adjust to a vastly reduced income, despite vaguely similar outgoings.

And then they come for you. The payments that made it possible to stay in work, to pay for help around the house. And now all that could disappear.

I’ve done the maths. My weekly disposable income with The Teenager at University is embarrassingly low. If I lose my disability payments, I will be in Minus Living.

What sticks in my gut with this whole thing is that I have worked my entire life, fought off a workplace discrimination case, started work at a new job and am still working. A job that fits around my MS, so-called ‘good-days’ and the utterly horrendous days, not forgetting the Can’t Function At All Days.

At this moment in time, I have been brought down so low, it’s hard to know how to come back up again. I could lose my house.

And I really thought I would be rewarded by trying, by dragging myself out of  bed day after day after day, all these years. By pushing myself to do things I would not have attempted previously.

There’s the nub. I should give up work. I should accept I have no other wage coming in. I won’t be able to live independently. And maybe I would Shut Up. And disappear.

D is for Diabolical Discrimination.

W is for Why are you doing this?

P is for Please, give me a break?

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The First Draft of Anything is S***

scriptThese immortal words by Ernest Hemingway have been my ongoing mantra this past week.

I’m taking a scriptwriting evening class at the local University, in the hope of learning a shiny new skill; I like writing and I like telly.

Excellent.

First lesson learned – it’s nowhere as easy as it looks. Second lesson – I need to watch more telly (bonus).

Sadly though, I won’t be watching for fun. I’ll be counting the scenes, looking out for important close-ups (C/U’s!)and listening to dialogue really, really carefully. In short, it’ll be endless homework.

Speaking of homework, I have to present my pitch in class tomorrow for a ten-minute script. In front of 16-odd other people who know every obscure writer/film/technique ever. And I can’t even count scenes yet.

Anyway, I threw myself into it – I have to get a great story, believable characters and short, punchy scenes into a measly ten minutes. Nothing too art-house, so my idea of a middle-aged woman contemplating the fragility of life while standing in a chip-shop queue might not translate that well (totally not based on my own experiences).

I wrote and deleted countless ideas. I watched more telly. I dipped in to tv scripts. I googled. And I still don’t have a pitch for tomorrow.

What’s most interesting about this course is the idea of ‘conflict’ and ‘journey’ – from conflict to resolution – according to the book I’m reading, scripts should present a way of conveying chaos/conflict and the character’s journey through it, back to order again.

Hmm. In short, my blog, over five years? Chaos to acceptance? Does this mean I’m The Hero? Can I start to undress in a telephone box without being arrested?

I doubt it, but it’s definitely food for thought, along with the popcorn I haven’t eaten for fear of missing vital scenes. I still haven’t completed my homework, but this course has definitely opened my eyes to how we portray real emotions, real passions and real conflicts. If I could only transcribe them, I would be happy:

INT: very attractive 40-something, seated at table, pen to mouth. She is obviously extremely talented and yet somehow doubts her innate abilities.

HANDSOME MAN: Wow, what you’ve written is amazing!

V. ATTRACTIVE FEMALE: (bats eyelashes, looks down shyly at reams of paper)

Oh, you know …

HANDSOME MAN: Seriously, it’s incredible. Let me make a few phonecalls. Baby, you’ll be a star!

V. ATTRACTIVE FEMALE: Shucks, it was nothing!

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A Bit Twisted …

iceI never use normally use the word ‘twisted’, but this is two blog posts in a row now.

From ‘twisty-turny path’ of my last one to a real, live twist in this one.

Am I actually clairvoyant?

I twisted my knee yesterday.

Of all the things to do and in such a random way. I don’t know about you guys but sometimes messages take a little longer to get from my brain to the correct bits of my body. So, I’m standing there, in work, knowing I want to turn. Most of my body does, except my lower legs and feet.

Snap. Pop. Twang. Something went in the back of my knee. It hurt, and then it didn’t, so I carried on.

A couple of hours later, I was in agony. All evening I slapped bags of frozen parsnips on it (I hate parsnips, no idea why I bought them) and elevated it. Painful doesn’t begin to describe it. As it was a Saturday night, there was no point going to A&E, so I took some Nurofen, watched ‘Strictly Come Dancing’ and shuffled slowly to bed.

This morning, I got up early and took myself off to the emergency department. Or rather, I limped. The pain was excruciating and triggered every nerve cell which is normally kept at bay by the neuropathic pain meds I take. I was a bit of a fizzing mess.

After triage, an x-ray and a consultation, I was told to rest, but keep moving. Move, but rest. And then prescribed the strongest painkillers they were allowed to and given a leaflet about knee injuries.

I felt like being brave so I went to work (I know, right?), where I took the first painkillers. The Boss had made coffee, so it was worth turning up just for that. Anyway, within half an hour, I was pain-free and ever so slightly out of it. Perhaps I shouldn’t have gone to work, but the thought of being laid-up at home reminded me too much of a relapse.

I got home, discovered the cat had left a poo on one of my rugs, realised I was out of milk and began to feel sorry for myself. Time for some more painkillers. And maybe a different kind of ice …

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Big Expectations

fatWell, that’s several hours of my life I’ll never get back.

I wanted to buy a plain navy blue t-shirt.

And that’s it.

Not much to ask?

I’ll admit, I’m big, although not excessively over the UK average.

Yet searching online I seemed to fall down a rabbit-hole of ghastliness.

I won’t bore you with the details of my ever-frantic searches, but suffice to say, if you’re a big gal, you bound to wear clothes with:

  • Ruffles
  • Huge dropped hems at the back
  • Sequins and cheap beads
  • Ridiculous slogans (no, I don’t ‘Blame It On The Prosecco’)
  • Garish patterns, swirls and side-ties (why?)
  • Lazy tailoring and all-round general baggy fits, i.e. sacks.
  • Lace. Lots and lots of lace.

Even at the higher end price range, the choice was dismal. Nothing was understated and elegant, or just … basic but well made.

In my job as a building project manager, I only spend one or two days a week in ‘normal’ clothes. More often than not I’m in steel-capped boots, cargo trousers and a hoodie. Hair pulled back in a ponytail and some lip balm for the chilly mornings. My other outfit is jim-jams as soon as I get home and fall asleep on the sofa.

So when I wear ‘normal’ clothes, it would be nice to wear something smart but casual. Well-made, classic. I’ve never been known for my fashion sense and never well be, but it’s refreshing to emerge from a cocoon of dust and mud with clean hair and no black bits in my ears.

Back to my tale of woe – a navy blue t-shirt. I dismissed the one with the sequinned pocket and dropped hem. The baggy one. The one with lace inserts. The one slashed in odd places. The one exposing bare shoulders.

Instead, I dug out my huge pile of ‘too fat to fit now, could possibly fit in the future’ clothes from my cupboard. And there, right in the middle, was a lovely t-shirt. Ok, so it has a scattering of tiny beads, but they’re so small I might snip them off.

If I breathe in, it fits perfectly.

I might not be able to talk much, but it makes a change from my hoodie?

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The Ugly Spectre Of MS

noThe Teenager collapsed last week.

As with most teenagers, he had his phone glued to his hand at the time and managed to text me in work:

‘can’t get off the floor, come and help me. I’m scared’.

I couldn’t get there straight away so sent others, who managed to pick him up off the floor.

By the time I arrived home, he was marooned in his bed, in pain and confused.

I took him to the GP and the chiropractor.

The evening before, we had been in A&E with extreme nerve pain. And were referred back to his GP.

Some tests were run.

He has been referred to a neurologist.

He mentioned a few symptoms that made my blood run cold.

He has been working out at the gym. That will be it?

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