Category Archives: Daily Life

Stripped Bare …

campathI still have a copy of my DLA forms from 2011, when MS shot it’s first devastating  blast into my life.

I still remember the soul-destroying process of detailing every single thing I couldn’t then do.

I was 37.

I still have the new PIP forms in front of me.

I just can’t do it.

Yet here we go again, despite a ‘lifetime award’ from the DLA. I have to go through the whole soul-destroying process again.

What can you not do?

Six years on, let me see.

First off, MS is still incurable and degenerative. So it’s unlikely to have been cured in the interim.

Yup, I still have MS!

Can I cook? Can I go to the toilet on my own? Do I have accidents?

Intrusive, invasive and completely unnecessary.

I have been fortunate enough to have had Alemtuzumab treatment three times, once more than the usual, given the severity of my MS.

Does this make me really ill? Or really not ill? I didn’t choose to go through an invasive chemotherapy-involved treatment to see how it goes. It was a serious decision. And has it’s fair share of side effects.

So I have nerve pain? Numbness? I trip up when I walk? I have brain-fog?

Serious enough for the DWP?

Probably not.

DWP forms are designed to turn your known world on its head – so you think you have mastered your illness? Hah! Have you incorporated it into your work-life? Oh, really?

PIP forms will depress you.  What can you do?

What can you not do?

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Stand Up, Get Knocked Back Down Again – And Repeat

knockedI had an ‘interesting’ taxi ride yesterday afternoon.

The Boss has picked me up for work every morning since early this year, when my symptoms made it too difficult to drive.

Almost a year on, it’s become the norm, which takes a huge amount of pressure off me, yet another adaptation that has slid into my life almost unnoticed.

After a bit of training, he makes sure there’s a fresh coffee in my little cup-holder, and if I’m lucky, a croissant or bacon sarnie.

Anyway, yesterday the job ran over and The Boss arranged a taxi to get me home which I fell into gratefully.

Until the conversation, which went something like this:

‘Been busy today?’

‘Yeah, lots of calls, but most of them for so-called disabled people, I drive them to their assessments? What a joke. Malingerers, the lot of ’em.’

‘Well, some of us do work? Like me?’

‘Yeah, but most of them, they look … normal? Nothing wrong with ’em. And there’s me, working 60-70 hours a week, slogging my guts out, to fund them? I mean, there’s something seriously wrong with the system?’

‘Yeah, but I work?’

‘Not the point, is it? Honestly, you should see them, prancing around, then well upset when they don’t get their benefits. Benefits? Free-loaders, the lot of ’em. And there’s me …’

This went on for fourteen miles. Nothing I said would convince him to see the other side of the debate. He’d read his newspapers and was ‘well-informed’.

It wasn’t only disabled people; students were another pet-hate; ‘four of ’em in my taxi – a quid each to go to town?? I mean, they gotta get used to real life, but they’re living it up like kings at university.’

His views to one side, this was a chilling reminder of the wider view of what people like us have to put up with, especially in light of being reassessed for PIP. Not only do we encounter the DWP rock-face, we also face a monumental societal challenge.

You would think, with such a serious illness as MS, we were somehow ‘protected’ from this bile. A verifiable, quantifiable, certifiable illness? Not a chance. We were all one and the same.

When I got back home, I grabbed the cat and went straight to bed. It’s the best place to be right now and I seem to be going earlier and earlier. It’s the only place I can be at peace.

I’ve been knocked down many times – most significantly in 2011 when MS blasted onto the scene, then the diagnosis in 2012 and my subsequent sacking. You get knocked down. You stand up. You take another blow. Partner’s left? Blam. Income dropped? Blam. You get knocked down. You stagger up again.

How many times can you get knocked down? Just when I think I have created a world that works for me, it’s destroyed. And this happens over and over again.

MS is bad enough, but the DWP should really have their own disease/illness classification – ‘DWPitis’ – : symptoms include:

  • Hopelessness
  • Fear of the future
  • Anxiety/panic attacks
  • Destitution
  • Increase in existing illness symptoms
  • All of the above x 10

And just when I think things can’t get any worse, The Teenager texted me yesterday to inform me he’s applied to be on ‘Love Island’…

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Weak? Yes. Strong? Oh, Yes

bossThe Boss fell asleep at 8am in a Wetherspoons pub yesterday.

It was a bit embarrassing, especially as I’d ordered a large breakfast and now couldn’t feasibly pretend we were going to share it.

So, I tucked in. Then I woke him up and offered him a piece of toast. He groaned and went back to sleep, clutching his glass of lemonade.

Bless him, The Boss had food poisoning. All the way to work he’d explained in great detail every weird and wonderful symptom he was experiencing and I tried my best to be sympathetic, but drew the line at just how many bottles of bleach he’d had to use in the loo.

I shook him awake when I’d scooped up the last of the sausage. He appeared wan and dishevelled, not helped by him not having been to a hairdressers recently. I smoothed his hair down, sent a text to our job explaining my plight and helped him back in to the van. He got home and slept all day and most of the evening.

He was stunned that he could feel so weak, literally unable to work. Well, I was on safe territory here, having been found fast asleep on a pile of plasterboard not so very long ago, and woke to find the home-owner, two electricians and a building inspector staring at me with mild bemusement.

Perhaps he now understood that fatigue is dire, but weakness is worse. The ‘walking through treacle’ analogy has never been better served. I can sometimes cope with fatigue, in a minimally interesting way, but weakness absolutely destroys me. It’s at that point that I reach absolute Dead End. Nothing happens. I lie, prostrate on my sofa, wishing I had a Magic Elf (or a dashing new boyfriend) who would load the washing machine, cook a simple dinner and soothe my fevered brow.

No such luck. I lie there, desperately wishing I could get up and … move. I pass many evenings in this state. The Teenager has witnessed me sleeping, bolt upright, eyes wide open. But I’m not there.

Today, The Boss picked me up, hollow-eyed and exhausted. I pretended to vomit, for a laugh and suggested we have some fried chicken for lunch. I fell asleep in the van at one of our jobs and woke up on the motorway. Luckily The Boss was awake.

I sent him home after he dropped me off this afternoon. I’m shattered, with a low-ish-level relapse rumbling. My right hand refuses to work properly and my balance is shot. The norm. The Boss will get better.

As for me, I’m slowly dying in the face of the DWP.

I’d choose KFC food poisoning any day …

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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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