Author Archives: stumbling in flats

12 Minutes …

For many of us going through the DLA to PIP process, it’s a devastating slide into everything we never wanted to face.

What can’t you do. And why?

After years of muddling through, re-adapting, making concessions for MS, we have to admit our endless ‘shortcomings’. Our failings.

We realise, sometimes with a huge thud, just what we can’t do. I plunged into a deep depression, because I actually thought I was doing ok, bar walking into walls and falling asleep at the slightest opportunity.

My forms took weeks to fill in. Painstaking. Personal, hideously personal. Numerous extra pages of ‘Cont. Info’ were included.

48 pages in all. Basically, my entire life in one document.

As a birthday present last week, a huge pile of tribunal papers arrived along with cards and flowers. Nice touch.

Buried in amongst over a hundred pages, I discovered that my form had a ‘considered/writing up time’ of 12 minutes.

I don’t know about you, but that’s pretty impressive. To read a compressed life with MS, all 48 pages, plus consider them and write a response in 12 minutes is speedy by anyone’s standard. Bearing in mind it’s not a new claim, but a transition from a lifetime award for DLA.

The result?

A face-to-face consideration was required. Which happened – apparently – although neither me nor my witness recognise the meeting she refers to. And this ‘health care professional’ appears to have the upper hand in my forthcoming tribunal.

Her ‘evidence’ is the ‘truth’. She was here, in my house, for 50 minutes in total. That includes losing her way (my mum directed her on the phone), coming in, setting up her laptop, talking to me (without looking at me), packing up and leaving.

It appears my entire tribunal rests upon her ‘clinical’ finding and ‘observations’.

I’m impressed.

To destroy someone’s life in 50 minutes is bad enough, but the lead-in took 12.

I am that insignificant. All my pain, my symptoms, my life being turned on its head. Not only that, the end of my planned future, being sacked from work, the endless relapses, the invasive treatments I’ve had. Not to mention their side-effects (hello, Fatty-Puff-Me).

As if that wasn’t bad enough, the person who knows me and my MS probably better than most, my wonderful MS nurse, cannot write a statement for the tribunal. Aside from the logistical nightmare that this would cause for the under-funded department, they have been ‘told’ by the DWP that their evidence is ‘meaningless’ and ‘patient-directed’ so therefore inadmissible.

So I face a tribunal based almost solely upon evidence of someone who does not know me, triggered by someone in an office who does not know me.

Ok.

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Grand Theft Auto (Immune)

Sometimes, life with MS feels just like that pesky game – the bane of my life when The Teenager played it for hours on end – sitting at the wheel of a very fast car, out of control, driving around with no regard for anyone else.

MS is such an all-consuming illness, affecting every area of our lives.

Six years after being diagnosed, I still feel as if I am shaking the branches of a tree, seeing what falls out. What have I forgotten to deal with?

Serious illnesses are often portrayed as ‘monsters’, ‘the demon’,  an ‘enemy’, something external, something to be conquered. If you’re ‘lucky’, you may be in the clear after five years.

But what happens when the illness is within us? And will last a lifetime? Our very own immune system misreading their specific directions, wearing down, and ultimately attacking us?

Welcome to the wonderful world with MS, where not only do you lose friends, perhaps your job, or your partner, but also your own body has decided to attack you?

It’s a lot to deal with, and it’s personal.

So, perhaps you can deal with being sacked for having MS, however unfair it is. You can mourn the loss of a partner who couldn’t face an unpredictable future. You can talk sensitively with your son, explaining everything in gentle terms.

I won’t die, like your grandfather. I had great treatment. I’m trucking on (my alternative to the hideous ‘fighting’) with MS. I’m still working, I’m still here. I’m even still studying. It’s all fine.

Yet that kernal of auto-immune is always present. How best to prevent or delay this? Massive doses of Vitamin D? Munch on almonds every day? Yoghurt?

A restrictive diet, full of courgettes and not much else? Pasting a smile on every single day, and blessing it for allowing me another day where I can carry on with life, however limited?

Or. The alternative. Questioning everything and accepting nothing. Pushing myself to the absolute limit, to prove a point.

When this illness is within us, where do we go to escape?

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Trials and Tribunals

Hmm.

What do you think would happen if you missed a DWP deadline, with no explanation?

Yep, you’d be ‘struck off’ and told to apply again, if at all.

Since first being contacted for my transition from DLA to PIP in October last year, I have hit all deadlines bar one – I was extremely ill and needed a couple of extra weeks to complete the forms.

The DWP were swiftly informed and sent out re-adjusted timelines accordingly.

Since then, I have had a decision, had a home visit, had another decision, had a mandatory reconsideration and been turned down on the points I made.

So now it’s going to a tribunal. I duly sent off the forms and had a letter back from the HM Courts & Tribunals Service. The DWP had 28 days to send a response.

That date was 3rd August. Hearing nothing, I phoned the Tribunals Service for information. I discovered the DWP has ignored them and will be sent a letter to prompt them for a response. Anyone here ever had a gentle ‘prompt’ letter with no sanctions attached?

This letter will give them an extra 14 days to respond. If they still ignore my case, a judge will decide how best to proceed.

If the DWP had responded on time, a likely tribunal would be held at the end of November this year, a full 14 months after first starting this endless, pointless paper trail. 22 weeks is the standard waiting time from lodging an appeal to it being heard.

With their non-response, it’ll probably be Christmas Eve.

To be fair, the woman I spoke to at the Tribunals Service was amazing; my story is nothing she has not heard before. Day after day she takes similar phone-calls, digging down in to the whole ‘lifetime’ award scenario for incurable illness, such as MS.

As an unexpected aside, a wonderful regular reader of my blog met my MP at a local event last week and outlined my case to her, even giving her my blog address. Long story short, I have since contacted my MP’s office and hopefully they will be taking up my fight, alongside my fantastically patient supporters who helped me fill in all the forms.

I’ve just dug out a letter from Capita about my home assessment. Clearly stated, there is the line, ‘if you fail to attend without a good reason, the decision-maker at the DWP is likely to refuse your claim’.

One rule for them ..?

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Halfway There

Around my 25th birthday, I drank a whole lot of different-flavoured vodkas in a smart Polish restaurant in West London, feeling very sophisticated.

A few years previously I’d celebrated by necking vodka from the bottle on the roof of a small-town railway station somewhere in Poland, and I felt free and full of excitement about the wide-open future.

Now I’m approaching my 45th birthday, I will no doubt be tucked up in bed by 9pm with a glass of water on my bedside table and a lopsided party hat on my head.

But, looking at it positively, I’m (perhaps) still only halfway there? At 25, I was halfway to 50. Now I’m halfway to 90. Not a bad age and a decent one at which to bow out.

Casting a beady eye over the past, it’s easy for me to see this life as a series of fabulous adventures, terrible dead ends and a whole load of missed opportunities, like one of those infuriating tiny, plastic maze games we had as kids, with a little silver ball we had to angle and guide into its final slot.

So was MS a wake-up call despite its terrible ramifications?

Physically, yes. I transformed overnight from a somewhat harassed single-parent with a job that fitted around school hours to someone who was quite literally on the floor.

I was planning and studying for a path to career enhancement, once The Teenager was safely ensconced in high school and life would become a little easier.

Tiredness back then was a long day in work followed by all the child-centred tasks after work. And repeat.

I really, really didn’t know anything about tiredness.

Mentally, MS was akin to being punched in the gut, over and over again. But, like they say, when you’re in the gutter, you’re still looking up at the stars.

When you go back to zero, the only way is up.

I liked writing as a kid and thought there was nothing to lose by trying it again. Six years later, I’m about to start a PhD in Creative Writing. Weird, huh? And all thanks to me venting my MS frustrations all those years ago.

I’m no academic, just a person who is passionate about writing the truth. My studies will focus on the MS ‘it’s all in your mind’ scenario that happens to so many of us, including me.

‘Hysterical’?

That’s me.

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Life, Interrupted, For a Little Bit

It’s not much fun when you’re trying to get around with your insides spilling out, and I don’t mean through blogging.

This hernia is dominating everything at the moment and because of it, life is on hold. For a little bit. Hopefully.

I’m still working (in a wonky, stomach-clutching way), still running the house (just about) and still catching up with paperwork (me and the hernia get up early in the morning, best time of the day).

To most people I must look like the oldest pregnant woman they’ve ever seen, the hernia now taking on the appearance of a six-month bulge and still growing. I turn 45 the week after next and it’s getting plain embarrassing, especially when I’m accompanied by the Man Mountain, aka the very tall and muscle-rippled Teenager.

My summer wardrobe consists of jeans I can now fit, due to my low-carb eating but teamed with  big flowing tops, so that I look like a very fat, very pregnant woman who wobbles when she walks and trips over a lot. And wears tents.

Yup, MS hasn’t moved aside, in fact, it’s intensified. With the hernia situated right in the centre of my body, the neuropathic pain has increased ten-fold. I walk into walls a lot more and basically pinball around my house.

And as for the pain, I’m on the strongest painkillers my Doctor can give me and I look back wistfully at the gas and air I had when I actually was pregnant and about to give birth, never mind the epidural. Now, that would be utter bliss.

So, we muddle along, the hernia and me, the hernia (Phyllis – we’ve known each other so long now, she just has to have a name) always going first. Of course.

And it’s ever so slightly icky. I never knew anything about hernias until Phyllis took up residence and when I read up about it (thank you, Dr. Google), I was horrified. So it’s a delicate subject to bring up, especially when people ask me what it is. Eww.

I’m not seeing a consultant until the last day of August, after two urgent GP letters and a deadly committed MS nurse fighting my case. It’s anyone’s guess when the actual operation will be.

The only way I’m getting through this month before the appointment is to imagine myself without my melon-belly; I’ll be reborn, and I’m half-tempted to ask them to tummy-tuck me at the same time, seeing as they’ve kept me waiting so long, the meanies.

Plus, I’ll need to be off work for a couple of weeks, which will give me ample time to embark upon some University reading. Result.

Or binge-watch Jeremy Kyle and Homes Under the Hammer.

Probable result.

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