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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I’m Better Than This …

miracleThe PIP forms have almost broken me down.

Shattering my psyche into tiny squared-off questions after years spent building myself up again has been incredibly difficult.

I’ve taken over a week off work; I’ve been virtually alone for eight days now. Apart from the cat and her various friends.

And that’s pretty tragic?

I watched the film ‘Wild’ two days ago, and although I haven’t trekked the Pacific Crest Trail for hundreds of miles, I did so in my mind.

When I’m upset, I hibernate, preferring to look my worst in the mirror and not to the outside world.

It’s a bit like a pity-party for one (and a half). It’s torturous.

Today – day 9 – I went to a short MS Society meeting less than two miles from my house. Safe.

Long story short, the support I had was amazing but people wondered where the real me had gone. Probably still on my sofa wondering how to dispose of the latest dead mouse outside my door and how best to fill in my PIP forms.

The real me?

All the PIP drama is akin to the employment tribunal of 2012; he said, they said, you’re lying. Analyse every single tiny little thing.

As someone said to me in the meeting today, yes, I am better than that, no matter the outcome.

Is the real me in there somewhere?

There’s definitely the old me, bubbling somewhere under the surface, but until the very real financial predicaments are put to bed, I may very well be the grumpy aunt at the Christmas festivities.

Don’t get me wrong, I love Christmas and all the promise it offers. It’s a magical time, and perhaps that is why I am praying for a miracle?

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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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