Beggar In Disbelief

beggarThese PIP (Personal Independent Payment) forms really do beggar belief.

I’ve finally finished a first draft to all the questions and I am an utter wreck.

To steal (may as well, nothing to lose) a phrase from Simon Cowell, ‘it’s been an emotional journey.’ But there’s no z-list stardom and a double-page spread in ‘Heat’ magazine at the end of it.

Perhaps ‘traumatic’ would be a more adequate word, because it really is. I’m sure they probably do a similar tactic when you join the SAS; breaking you down until you’re snivelling on the ground. But then! You rise up, invincible, ready to take on the world.

However, in my case, the opposite is true. They’ve broken me down. And that’s it.

I’ve taken a week off work to fill in the forms and because I’ve got a pesky MS flare-up plus a rotten, stinking cold. I’ve got a Rudolph nose, and am running out of tissues and energy.

The more I read, both in the media and in online forums, about people with MS having to go through this unnecessary process yet again the more angry I become. To put it this way, I work, and I receive Working Tax Credit, to allow me to live above the poverty line. I fill in a fairly basic form every year, stating my wages and that’s pretty much it.

However, with PIP forms, to receive additional money to pay for the extra costs attributed to disability (one like MS, as yet incurable and as yet, degenerative) I have to literally bare my soul – and my bottom.

Yep, for those unfamiliar with these forms, there’s a whole section on going to the loo. And another about personal hygiene, i.e. how well you can wash yourself.  Are disabled people really reduced to these facile benchmarks?

A single form to cover every single possible disability ever recorded is ludicrous.

According to Scope, there are 13.3 million disabled people in the UK, all filling in the same form, but all expected to depict their own unique disability experience within it.

Further, you spend £550 a month per average more if you are disabled. Which is the very reason this benefit exists. And for doubters out there, disability benefit fraud is 0.5%. The lowest level of any ‘benefit’.

Makes you wonder how much is siphoned away in tax evasion?

Jus’ sayin’…

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The Teenager Returns …

backA flurry of texts, a bus journey cancelled due to an international rugby match, a friend’s car pressed into service over the Severn Bridge:

The Teenager arrived home from University for a gathering of sixth form friends on Saturday night.

And suddenly, there he was, towering in our little cottage doorway.

The Teenager had returned, albeit for a quick overnight stay. We hugged, or rather, I did, The Teenager a bit embarrassed. And tired. And hungry.

Much the same as when he was much younger, his first word was ‘food!’ He raided the fridge (‘Cheesy Strings!), the freezer (pizza!), the cupboards (bars and crisps!!), as intent as a locust. Finally sated, we chatted. A very fast, very convoluted catch up before he jumped up, ‘Shower! OMG, a dry towel! Shampoo! OMG, Loo roll!’

Many wet towels later, accompanied by blasting music from his phone, he popped back downstairs to get to know our cat again. And eat more pizza and protein bars. He told me that one of his best friends also has a mum with MS and I’m overwhelmed with happiness that they can support each other.

‘Mum, it’s weird, but it’s just weird, like very weird being back in my bedroom, very weird. You know?’

‘Yep, must be … strange?’

‘Yeah!

He wolfed down his pizza, slurped the rest of his drink and jumped up again. Before I knew it, he was dressed to impress and ready to leave.

The next morning, I woke up to a stack of bar wrappers, empty cans, wet towels and the fan in the bathroom still chugging away. The TV was frozen on ‘Match Of The Day’. I got on with paperwork, one eye on the clock for his return journey to Bristol.

At 3pm, I knocked his door.

‘Muuuuuum. Hiya! I’m fine, but leave me … it’s my double bed. It’s amaaaaazing.’ He made snow-angels underneath his American flag duvet, but I nagged him (how I’ve missed it!), and he showered, changed and was ready to go back to Uni.

I drove him in to town, dropped him at his bus stop and watched in my rear view mirror as he got on to the coach. He’s going to be ok.

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Stuff The Turkey …

grinchChristmas is most definitely on hold for now.

These Personal Independent Payment (PIP) forms are the ever present Grinch, creeping around my house sucking the very life out of everything that is positive and festive.

However, you guys are angels in disguise – thanks to all your incredible advice, I have now come up with a plan:

I ‘borrowed’ a pad of A3 paper from The Boss and I’ve got one sheet per question. First, I wrote down every MS symptom I experience, relating to each question, then went back over it and jotted down every single example of difficulty I could think of, relating to each symptom, for each question. It’s mind-bendingly complex and it’s taken me hours and hours. Whole days, interspersed with sleep and despair.

Finally (and I haven’t managed it yet), I will take each question in turn and write out a full answer using all my bullet points. After that, I will find a kindly peep (hello, Boss!) who will transfer my scribbled, unintelligible answers on to the form.

I met up with a friend last week who simplified the whole process by saying, ‘imagine a friend, who’s the same age as you. What can she do that you can’t?’ Well, that floored me. As I left, he also said, ‘no one should go through this process alone’ and it was all I could do not to dissolve into tears there and then.

He pointed out just how important it is that – especially as MS can fluctuate for some of us – the words from the DWP to keep in mind are that you will be assessed on what you can do;

  • safely
  • reliably
  • repeatedly
  • to an acceptable standard
  • in a reasonable time period

So as your symptoms fluctuate, so does the time/pain/stress it takes you to complete certain daily tasks. Perhaps one day you just about get by with a lot of give and take and the next day you’re on the sofa. Like me.

You’ll find you repeat yourself over and over in each question and that’s ok. Your MS has given you a set of symptoms and they give you a set of problems and very often these are the same symptoms and the same problems.

What these forms don’t prepare you for is the absolute horror of trawling through the years, realising how much you have ‘adapted’ to MS and incorporated it into your life. Because you have to. When I think about it – and the friend I can compare myself to – it’s just not normal to fall asleep in work, be too tired to cook six days out of seven, to not leave the house unless I’m with someone.

I am living a twilight existence and thanks to the PIP forms, this has been exposed in all it’s grotesque glory.

The Grinch has stolen Christmas and replaced it with Hallowe’en.

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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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