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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Out Of Date(s)?

cheeseI discovered an old block of Parmesan in my fridge the other day.

It was well past it’s sell-by date and had been sadly neglected and forgotten about, but I sliced the edges off, grated it and it was just fine. Perfect.

As I was sprinkling it over my pasta, I realised, I am this Parmesan.

Before you think I truly am suffering from an extreme case of Empty Nest Syndrome now The Teenager is at University and my only companion at home is my cat (and my plants), bear with …

Back in 2012, soon after my diagnosis of MS, I lost:

  • My partner (he scarpered, sharpish)
  • My job (bullied, then forced out)
  • My health (left the building)
  • My envisaged future (dashed)
  • Hope (lol)

Now in 2017, I have:

  • A brilliant job
  • Despite MS, decent health and access to treatment
  • A brighter future (I think)
  • A whole lot of hope

Excellent. But this is where the Parmesan comes in. I am still partner-less; I am that forgotten-about block of cheese in the back of the fridge. Whilst the milk and sweet chilli sauce may have regular outings, I never go anywhere.

And, sticking with my very dodgy analogy, with a bit of sprucing up, maybe I should rediscover myself and find the True Me lurking just beneath the surface. Sure, I may be a bit battered and bruised from experiences over the last five years, but with a bit of help, who knows?

Part of me hasn’t looked for a partner, focusing instead on the more pressing matters of giving The Teenager as normal a life as possible, winning a workplace discrimination case and sorting out MS treatment. It didn’t leave much room for anyone else. Plus, I was in the middle of an MS Pity-Party For One, which wasn’t pretty.

Well, now The Teenager is having a ball at Uni (latest text, ‘Being an adult is weird, but am getting used to it‘), my job is sorted and I’m facing the future filled with hope, a teeny-tiny bit of space is being carved out.

Then the Fear Factor kicks in. I simply can’t date because:

  • The cat wouldn’t like it
  • I don’t own any ‘dating clothes’ and I can’t wear heels
  • Ditto dresses. Outside of my job (building-site clothes), I wear jeans
  • When do you bring up MS?
  • The last time I dated, the iPod hadn’t been invented
  • I could suddenly get foot-drop and splatter myself across the floor

So you can see the dilemma I’m in. It would be kind of nice to have a partner-in-crime; someone who didn’t mind the jeans, the cat … the MS. Then again, it would be nice to wear heels again, but that isn’t going to happen any time soon.

I often wonder if I am subconsciously preparing myself for eternal singledom. I cut out holiday adverts from companies with names like, ‘Only The One’ and ‘Just You’ (no single supplement, no pressure). I am taking an unhealthy interest in talking to my plants. I automatically divide recipe ingredients by four.

As we approach the season of unbridled smugness, i.e. Christmas With a Loved One, spare a thought for little old me, pruning my Poinsettia and signing Christmas cards from me and – you guessed it – the cat.

Sad, much?

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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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We Are Five

candlesMy little blog turned five last month.

Five years old!

The Teenager had just celebrated his 13th birthday, I was a lot skinnier and life was pretty horrendous.

Full of frustration and anger at the constant bullying I was experiencing in work since my MS diagnosis a couple of months earlier, I needed an outlet.

I had been chatting through email with a wonderful author, M. J. Hyland (her books are brilliant – I totally recommend ‘How The Light Gets In‘), who herself has MS, and she encouraged me to start a blog. And so, I did.

Five years later, The Teenager is throwing himself into University life, I am mourning a wardrobe full of clothes I don’t fit (thanks to Grave’s disease) and life is pretty wonderful.

Looking back over the last five years, it’s been a twisty-turny path. For at least two years, I was in a dark place; coming to terms with such a diagnosis was complicated enough, but coping with vicious bullying in work and an extreme course of MS treatment at the same time almost pushed me over the edge.

And then I was sacked from my job for ‘being a liability’ due to MS and with the ensuing legal battle  life wasn’t fun for me, or, more importantly, for The Teenager. Something had to change, and luckily it did: this blog.

It’s no exaggeration to say that it pulled me out through the murky swamp I had found myself in. After a shaky, tentative start, I began to receive comments on my posts. There were other people out there, just like me! You guys. I talked about everything. And you sent me your own experiences and your wisdom. We mulled over problems, worked things out and I had the benefit of many different viewpoints, not just my own.

Life now is a world away from five years ago. The Teenager is a happy, confidant, go-getting young man and I could not be prouder of him. He tackled all the challenges he faced head on. I’ve completed a Master’s and gained a Distinction. I enjoy my new job and it’s flexible, working around the MS quirks.

I often wonder where I would be today, had I not had this diagnosis. Quite possibly, unfulfilled, still dreaming about writing, still wondering when my real life would start.

Now I know there will be no knight in shining armour, I have gained an inner strength. Now I know that life can be utterly random, I go with the flow.

But above all, now I know there are people like you out there who take the time to send comments, opening my eyes and expanding my vision of the world, I know me and The Teenager will be ok.

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