Jan 08 2018
4 Comments
Emotions

May You Live In Interesting Times …

cookieI always thought this was a Chinese blessing, not a curse.

I think we’re all living in, um, interesting times. From the global (will we be blown up tomorrow?) to the local (will my MS nurse understand my latest ramblings?).

I had an MS nurse-led appointment on the 3rd January and I told her everything. Which is quite unlike me; I’m usually, ‘yeah, I’m fine. Huh? MS? Oh, yeah, it’s all good.’

After the initial shock of diagnosis all those years ago, I’m savvy. Or perhaps not. I hold it all in. I consult my notebook, mention ‘significant symptoms’, ‘potential relapses’, etc and then say, ‘that was lovely, thank you very much’.

Not this time though, and I even came close to … tears. My lovely MS nurse said to me, ‘… it seems to me like this, the PIP forms, are the last straw of everything you’ve been through and all the fights you’ve had?’

Yes, yes and yes again.

Every single person, whether they are healthcare professionals or people with MS and/or other neurological disorders all say the same – if you strip someone back to what they cannot do, after years in which they have adapted and overcome obstacles, you are merely increasing the despair and anxiety of formerly positively active people.

So where does that leave me now?

In the wee small hours, I am absolutely petrified. Towards morning, I’m calmer. During the day, I laugh it off. Until it starts again. The ramifications of this single benefit, PIP, are huge.

I hate to bring politics into it, but when I’m only asking to continue working and staying on the poverty line, it would be churlish not to?

Theresa May’s ridiculous decision to call a snap-election was solved by spending over a billion on harnessing the DUP voting power.

A billion. Like *that*.

Oh, and we’re the scroungers Mrs May?

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Dec 25 2017
10 Comments
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 20 2017
6 Comments
The Teenager

Wise Beyond His Years …

owlThe Teenager is back for the holidays and my heart is bursting with pride.

It seems I sent a child off to University in September and he’s come back a man.

Sure, he’s stripped the fridge, freezer and every cupboard bare in a never-ending quest for food. He brought back three loads of dirty laundry, and he’s spending an inordinate amount of time in bed.

But in amongst filling and emptying the washing machine, we’ve had some great chats, in particular one about regrets. He explained he had none at all, despite everything, including growing up with a mum with a serious illness. He felt it only added to his compassion and understanding of what it is to be human.

Blimey. We mulled over some other points, and nope, he has no regrets about anything and he’s enjoyed finding out more about himself these last three months.

What a brilliant attitude to have at such a young age. Isn’t it weird when we find ourselves learning from our children? I thought hard about what he said, and I really do think from this point onwards, I may just adopt this way of thinking. Given the absolute hell of the filling out the PIP form, raking over every single aspect of my life and also reflecting back on this MS journey and more importantly, the journey that me and The Teenager have had together for the last 18 years, it is now time to look forward.

His excitement for the future is infectious. PIP is sent, there’s nothing else to be done apart from prepare for a fight. But that can wait for now. It is more important for me to count my blessings and concentrate on everything that is good in my life, and there are many things. The Teenager, you guys, my friends and so much more.

On that note, I’m off to stock up the freezer again …

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Dec 18 2017
4 Comments
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.

Dec 06 2017
6 Comments
Emotions

MS Is Curable – Just Ask the DWP

curedYes, surprisingly, MS has been cured for a third of us!

Surely we should be dancing and/or shuffling/stumbling in the street?

Well, no. MS is, and always has been, incurable. Degenerative. Progressive.

So far. Who knows what the future holds? And I pray for a cure.

Until then, we get on with our lives. Or so I thought.

We bring up our kids, we go to work, we engage in society. We may have to fight the odd unfair dismissal from work tribunal, but we still pick ourselves up and continue on. We live lives that slowly encroach upon what is ‘normal’ for our age-group. We give up stuff. We manage.

For me, one of the advantages of DLA was that I was able to access higher rates of Housing Benefit and Working Tax Credit. If I lose PIP, I will lose those also.

DLA basically pays for me to go to work. As it stands, I am already living well below the poverty line. To lose DLA will effectively render me homeless, as no-one can live on minus £75 a month, after the standard bills have been paid.

I’ve heard stories, from friends of friends, of people who don’t work as it’s not worth it. Yet we don’t all have work-place pensions or critical illness cover. For me, as long as I can, I will always choose work over the alternative. I don’t care if I earn the same or less than staying at home – work is banter, it’s real world and it’s choosing to live, as long as am I able to.

I have until Christmas Eve (lol) to send my PIP forms back, and then I think I will have a decision within 12-16 weeks.

Not a long time to plan for any alternative?

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