Category Archives: Daily Life

Dec 25 2017
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Daily Life

Sketching Out The Details

ahaLife is so hazy at the moment, everything put on hold until I hear from the DWP and their assassins assessors.

It’s a weird feeling; a bit like an MS relapse, when nothing is real and everything hurts.

PIP has taken over my life, as has peering into tiny details I normally prefer to gloss over. Yep, sounds just like a relapse, a DWP-sanctioned relapse?

Anyway, life continues for now; work, home, rest, sleep, work, home, rest, sleep. It doesn’t usually leave much room for any form of excitement. Until today, Christmas Day.

I woke up around 13 minutes before The Teenager, at 6.45, made a cup of coffee and looked around my house, as if for the last time.

I do this every day since the PIP forms, but today had a special poignancy. I’d ordered a home-cooked Christmas Lunch for Two, bought a big box of crackers and had dug out decorations and strings of fairy lights. It wasn’t the advert-perfect Christmas, but it worked. I think.

In amongst a wonderful day spent with family and friends, I received really thoughtful gifts which almost made me believe there could be a future beyond the DWP’s decision:

Beauty: this is always amazing as I normally feel so fat ‘n’ frumpy, having packed on the weight since Grave’s. My mum, brother and younger sister all gave me gorgeous gifts. I just have to embrace my size …

Practical: The Teenager gave me an Amazon voucher to buy books with. Perfect gift, my Wish List is long. My friend gave me an Amazon Echo, to train it to remind me to take my meds (he knows what it’s like when I don’t) and get up to speed with the news.

Inspirational: I was given two beautiful sketch pads and a pack of pencils. Yep, I’ve joined a Drawing Class in January.

I have no idea why, a totally impulse decision. I haven’t drawn anything since A Level Art; I think it’s a case of the orchestra playing on when the Titanic’s going down?

I want to believe there is still a normal life after this. Probably smaller, narrower and more careful than before, but still, some kind of life?

In the meantime, we are teaching Alexa the Amazon Echo to miaow and answer utterly random questions. She’s unfailingly polite; I asked her what she thought of the DWP and she said, ‘I don’t have an opinion on that.‘

Unlike me …

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Dec 18 2017
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Daily Life

PIP Posted – The End of the World As I Know It?

clockIt’s done. It’s been sent. And the clock starts … NOW.

After being given a Lifetime Award for ‘Disability Living Allowance’ (as MS is, dur, incurable. Ask anyone!) , I have now sent off my ‘Personal Independence Payment’ forms.

My DLA payments will stop when a decision is made about PIP. I could get lucky, but so much for ‘lifetime’.

But then the Powers That Be have a curious idea of what exactly constitutes a ‘lifetime’. Perhaps they were hoping I would have popped my clogs, rather than popping the new forms in the post?

Well, I’m still here, but only just. I guess anyone would feel a little anxious after writing about the most intimate aspects of their life and sending it off to a random stranger in an unknown office? And not only that, someone who will be paid a bonus for not allowing me the benefit?

I have had to write about stuff no one else knows. And I had hoped it would stay that way. Not even my trusted neurologist or MS nurse knows the half of it. If I had another half, they wouldn’t know even a quarter of it.

So, there’s me, laid bare. And now I wait, and make contingency plans. If I am turned down, I have the right to appeal (the whole process is quite complicated and I’ll have to read up on it over Christmas), but basically, any payments will stop.

And therein lies the problem. No matter what way I look at it, no one can survive on a deficit of £75 a month. Even though I still work. It’s beyond reason. Sure, I can pay my rent, the council tax (a punishing £96 a month, even with a single person’s discount), utilities and phone. That’s even before food.

So, there’s me, laid bare. I am writing about this to highlight the stark reality of many of us facing such drastic cuts to our income. Even before this change in my circumstances, I was barely scraping the poverty line. And still working.

I am crossing everything for a miracle, that perhaps my lifetime award will remain a lifetime award. In the meantime, I’ve been joking with my friend that I could live in a camper van on his driveway.

When I say joking, I mean, that sad, melancholy form of a joke, when actually, it means something much more serious.

Nov 20 2017
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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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Nov 17 2017
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Daily Life

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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Nov 06 2017
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Daily Life

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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