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?

Tagged , , ,

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’…

Tagged , , , , , ,

Home Is Where The Heartache Is …

aloneOur Government is probably completely disinterested to know that since April this year, over 50,000 Motability vehicles have been removed from people with disabilities.

Happy now? Did you claw back that money? Come down hard on those who ‘con the system‘?

Contrary to popular belief, these cars are not ‘free‘; people who qualify surrender most of their disability benefits to pay for them. They have no doubt carefully weighed up the options and decided that independence is worth the financial sacrifice.

It’s no coincidence that Personal Independence Payments arose at the same time as Austerity, aka, The Banking Crisis. Unwilling to blame those who should have carried the can (Bankers), our Government decided instead to target those who played little, if any part in this debacle.

However, at times of financial crisis, it’s always easy to blame the weak and powerless (as history has proven time and again), and our Government, in collusion with the right-wing press, has stoked the rage. How many times can you read the same article about a so-called benefit cheat who is actually a trapeze artist? A mountaineer? A stripper?

Over and over again, the Government perpetuate and encourage these stories – about us – that are simply untrue. Poverty-porn programmes now fill our TV schedules – Benefits this, Benefits that. Cheat, charlatans, wasters.

However, back to those 50,000 vehicles removed. Result? What do you think these families do now? Because 50,00 vehicles equates to at least two people per vehicle, and probably more. So, at least 100,000 people with a disabled person at home now have no access to a car. Or independence.

What do they do? Well, they revert to the bad old days when they relied on a complicated network of favours. So they do less and less as the independence simply isn’t there. They stay at home.

Home should be a safe haven. A place of comfort and family, yet now it is more akin to a prison.

And even there, the claws of right-wing nastiness strikes. I’ve read the comments on social media after every poverty-porn programme – ‘well, they all have massive tellies, they can’t be that poor.’ 

Here’s the thing. When your options are limited, when you’re shoved back into your little box and the door is slammed shut, a TV is a window on a world you simply don’t have access to, and it’s probably being paid for week by week through some money-grabbing company such as Bright House.

The bigger the better – and why not?  All the better to see what we’re missing out on. And it’s a cheap and effective way to educate the kids, to encourage them to aspire for more – look – there’s a world outside of this box we can’t leave, now our car is gone.

Am I angry? You bet I am.

Tagged , , , , ,

This Is Not A Joke

a jokeA friend sent me what I thought was one of those online jokes this morning.

Except it wasn’t. It’s real.

I present to you the Department of Work and Pension’s ‘6 Tips for dealing with stress’.

These are the people who will soon determine whether or not I still have MS or if I have been miraculously cured. If cured, I stand to lose what little is left of my disposable income.

So, now that I have a huge form to fill in and am beyond stressed, what do they suggest?

Helpfully, in their introduction, they point out that, ‘too much stress can be unhealthy – around 9.9 million working days are lost each year to stress, depression or anxiety.’ Would that be the same stress, depression and anxiety they themselves are currently putting me through?

Anyway, the first tip is to ‘Address the Causes’, with the unhelpful and rather sinister tip, ‘it’s also important to learn to accept when things are out of your control.‘ Are they actually, seriously having a laugh?

Tips two and three  – Schedule Your Time and Take A Break – basically say the same thing – have lunch outside. It’s that simple. Apparently this can ‘prevent blockages‘ (huh?) and ‘inspire new ideas‘.

Tip four – Stay Healthy (lol) – again, suggests going outside (I think they are slightly obsessed, which is weird as they’re taking thousands of Mobility cars from people, who now cannot go outside).

Tip five – Keep in Touch – build a support network. And laughter is an excellent stress reliever, apparently. So is banging my head against a wall, if only I had the energy.

Tip six – Do Something you Enjoy – basically, do something you enjoy. They suggest reading or gardening.

Well, hopefully after reading these six tips, you all feel a lot less stressed. I know I don’t.

When this government department is snatching lifetime awards for incurable illnesses from people and pushing countless others into poverty, homelessness and worse, it seems callous in the extreme to publish such a flippant post.

Is it me? Am I missing something?

Tagged , , , , ,

A Right Barrel Of Laughs

barrelThe DWP (Department of Work and Pensions), in reassessing whether or not I still have MS, is like a huge, malevolent vacuum cleaner.

It’s sucking the absolute joy out of everything.

I go to work under a cloud, come back under a cloud. I’m miserable, fed up and terrified about the future.

The depression rate for people with MS is three times higher than the national average. Throw in a Dickensian and brutal reassessment and I’m in no doubt it’s even higher.

I feel as if I’m teetering on a very high tightrope (note to DWP: no, I don’t do this in real life), and I can either use every bit of my self-will and inner strength to stay on that rope or simply free-fall into the abyss.

I’m trying hard to reintroduce some sense of normality into my life, plus a dash of humour. It’s incredibly difficult, especially as, freed from the routine of having a Teenager at home, I’m now able to give into the heightened fatigue, nerve pain and spasms. So I go to bed early as the darkness only makes me feel worse.

With all this in mind and the season of Goodwill to All fast approaching (haha), I’ve started a little list, where I jot down the happier and funnier side to my life at the moment.

Top of the list is of course, The Teenager. He really has taken to Uni like a duck to water and we text-chat every other day. The pride I feel in him and his achievements will never be dented by the DWP, no matter how much they try. He’s 100% ring-fenced.

Here’s my list this week:

  • When The Boss picks me up for work, he makes sure there’s a cup of coffee ready in the van. Bless him. No donuts though.
  • I went to my evening class this week, after calling in sick for the last one. Result.
  • The cat brought home a (dead) rat the other day. I’m not quite sure where the humour is in this, but I was brave enough to schlep it in to a bag and dispose of properly.
  • Speaking of the cat, I had to get her to the vets again for her Flea Bite Allergy (a real thing!). Despite the steroid injection curing her extremely quickly and giving her bags of energy, I was nevertheless disappointed to see that she didn’t have the side effect I usually have from steroids, i.e. cleaning the house.
  • The joy of discovering my next Book Club book is very short.
  • I laughed until I cried at ‘Motherland’ on the BBC. Genius.
  • Sitting in the works van a lot, I’ve managed to get through a very long book, ordered Christmas lunch for me and The Teenager and browsed Pinterest for decoration ideas I’ll probably not get round to doing, but the intention is there.

So life is a precarious balancing act right now. Pleasure is fleeting, fear is endless.

But I will keep writing my list, until I can’t. And then I’ll know I’m in trouble.

Tagged , , , ,