Tag Archives: DWP

May 15 2018
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Emotions

The Gap In The Narrative

There’s an insightful documentary on Netflix, ‘End Game’, about end-of-life care. It’s a beautifully moving film and I highly recommend it.

One of the doctors explained that ‘suffering’ is the gap we experience between how our lives were and how they are now, and this hit a real chord with me. It’s all about acceptance, right?

Although he was talking about the End Game, it was a powerful and invigorating point.

We are diagnosed, we grieve, we accept.

We gather ourselves together and get on with life, however short it may be.

It sums up what I’ve been tussling and struggling with these last six years.

Simple?

Perhaps not.

All of us who are diagnosed with an incurable and degenerative illness face loss, and it’s incremental. We may not be at death’s door, but the loss is there and potent. We may have to accept our jobs are under threat, our partners lose patience, our friends drift away.

Should we accept that this has happened and if we don’t, are we still suffering? Perhaps:

  • I could have pressed my ex-employer for more compensation, but I chose not to stoop to their level.
  • I should have been worried when the government and the media started spewing out anti-disabled/benefits propaganda?

Suffering to acceptance is a very, very difficult journey for anyone to make, far less someone with an illness such as MS.

So, say we get through all that, as I hope I have. My son is fine, my MS is governable. Right, next stop, Acceptance?

I think this is only true at a micro level, which I think an illness such as MS thrives upon, for the good. MS brings us up short. We do smell the roses. We are normally young so have the chance to change our lives.

It may not be absolute acceptance, but it’s half-way there?

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May 10 2018
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My Ramblings

The More You Tell Us We Can’t, The More We Just Might

I don’t know how you guys are doing, but life under our present government is an anxiety-inducing experience of hell for me.

A weird, subversive world where right is wrong and wrong is worse, way worse than you could ever imagine.

And a world where MS is magically reversible because a former A&E nurse says so, after ‘observing’ you for half an hour.

MS. The illness they can’t even find a test for, far less a cure.

Cast your mind back to the last General Election – all those earnest politicians vying for your vote; the couple, the couple with 2.5 kids, the retired couple, the middle-aged couple. Where were you?

Did you once hear our leaders address the 1 in 5 of us who are disabled? I’m a media junkie and I didn’t hear a thing.

I heard about tax relief (I don’t earn enough), inheritance tax (I don’t have enough), and tax in general (I live at sub-poverty level). I heard about ‘hard-working’ families. About ‘hard-done-by-pensioners’.  Disabled people? Nope.

In fact, I was so annoyed, I responded to a BBC Wales tweet and ended up being interviewed, my absolute pet-hate, but the point had to be made. Not that it made much difference.

Our government was simply not listening to people with disabilities, Let’s be honest, few of us will get through life without some form of ‘disability’, so why be so shy about it?

Truth be told, we are simply not media-worthy, and the whole transition taking place from Disability Living Allowance to Personal Independence Payments is just another modern tragedy taking place in every single street up and down the country, but is under-reported on a terrible scale.

Want to know a secret?

Should you live long enough (and many, many illnesses are non-age-specific), you too will be disabled! Yep.

I am absolutely fed up with being ignored by politicians unless we are a good excuse for a photo-op. Some of us are in wheelchairs, some of us are not. Weirdly – we are all different.

Is it fair we have to fight just to get a taxi? Just to keep our job?

In my view, there has to be a backlash soon.

And it cannot come soon enough.

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Apr 02 2018
6 Comments
Emotions

A Date With Fate

People often say, if you think too hard about the best time to have a child, you never will.

It’s the same with car crashes and disabilities.

If you’d asked my 23-year-old self if I had the time and resilience to be involved in a near-fatal car accident, necessitating six months off work, I’d have laughed. But it happened.

Forward 14 years and if you’d asked me on Friday 24th June 2011 whether – as a divorced mother of an 11 year old – I was ready for a serious, degenerative illness to suddenly pop up and change my life forever, I’d have laughed my head off. I had far too much to do, how could I possibly fit it in?

Yet it happened – I went to bed that evening as usual and woke up in a completely different body, one I barely recognised.

The surprise element in these three scenarios can be overwhelming for people like me, who think they knew where they’re going.

Just like that, you don’t.

I often think back to that fateful evening and wonder if I truly appreciated my life, as it was, when I closed my book, fluffed up my pillow and turned out the light. I don’t think I did.

Sure, I had a plan, and it was a good one – possibilities were opening up as The Teenager entered high school and the tethers of childcare were loosening. I would also lose that extra weight, learn how to apply eyeliner and rustle up a mean Martini.

MS hit and I went under. For two years. It was almost as if I refused to believe that it had actually happened. I was grieving for what could have been and what should have been. It was all so … unfair.

It’s only now I realise that it wasn’t so much the MS that rocked my life (**** happens?), but my inability to recognise that life had changed and there was absolutely nothing I could do about it. A bit like the car crash.

Almost seven years on from that day, I am serene, calm and accepting.

Nah, not really.

But – I’m much more flexible in my approach to life, unlike my body, which is often rigid, wracked with weird vibrations and does the strangest things.

So many awful things have happened since MS but none now have the power to shock me quite as much. When life events drop down the shock-scale, it’s rather nice. When MS happens, what can be worse?

Oh, wait, I forgot about The Department of Work and Pensions …

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Mar 31 2018
2 Comments
Symptoms and Treatment

Out In The Open

I realised something quite profound the other day.

My life since the age of 13 or so has been divided neatly in half by two very different medical problems.

And not only that, one was visible (far, far too visible) and one is by and large invisible, to most people anyway.

And it is this issue of ‘visibility’ that makes me stop and think, and one which links both problems.

For over 20 years, I had incredibly bad acne. To many people, this might be a case of, ‘so what?’ But believe me when I tell you I went through absolute hell. It was difficult enough enduring it throughout school (you can only imagine), but for it to continue well into my 30’s was horrific and dominated my life entirely.

I would go to bed every night for two decades, praying I would wake up with clear skin. Very few people ever saw me without thick make-up (I tried all the foundations under the sun), but none of them could ever disguise the angry skin flaring up underneath. The more I tried, the more I failed.

I simply can’t begin to explain how my skin affected my life. My face was the first thing people saw and every time someone looked at me, a little piece of me died inside. I knew exactly what they saw, and I felt humiliated and ashamed.

And then, just as my skin cleared up, MS hit.

I wonder whether it is my experiences of hiding away, saying no to so many things (so many regrets) and generally shunning the best that life can offer that has made me so vocal about living with MS.

This time, I refuse to hide. It’s tempting, very tempting. In light of the DWP debacle, part of me is seduced by the idea of doing what they ask, shutting my front door and retiring politely from public view. And I remember exactly how that feels, from years and years of experience.

But I won’t hide and now I have the reverse problem – having to work endlessly to prove to people that I actually have a medical issue. It’s quite bizarre.

Ultimately, what can I learn from this? Am I trying to overturn my ‘mistakes’ from before? If I am, bring it on! Perhaps if social media and blogging had been around ‘back in the day’, I would have evolved into a proud ‘reclaim acne’ teenage blogger.

As it stands, visibility and medical symptoms have been the enduring story of my life. Isn’t it time we reclaimed all health issues as just that – if you’ve got an issue with it, jog on?

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Mar 13 2018
8 Comments
Daily Life

Hair-Brained

Readers, I have committed a cardinal sin.

I quote, from a DWP representative who visited me for an hour, with me being the last one on her list of six for that day:

‘she … raised both arms up to her head running her fingers through her hair.’

That is an actual ‘observation’ of what it is like to live with MS.

Funnily enough, all her comments create an image of a meeting I don’t actually recall taking part in. Apparently I was ‘dressed appropriately for the climate and was well-kempt.’

If you consider a worn and old t-shirt and jogging bottoms (minus a bra) to be well-kempt, I would seriously worry. Likewise my hair, greasy and lank, which I hide under a woolly hat most days.

My ‘memory is good’.

Yeah, I wish.

I ‘handled my ID well’ – which is strange as my mother did that for me.

My ‘speech was normal and I showed no signs of distress’. So she obviously forgot when I asked her to give me a break and stop asking me question after question after question, with the sole aim of catching me out.

Apparently I ‘visit family often’. My mother lives two streets away, my sister a few miles. I haven’t seen my sister in months and my mother visits me by taxi.

I could go on but I won’t bore you with the endless lies.

One last thing, I was ‘chatty and engaged’, with ‘full eye contact’. Which is strange as she (the Assessor) never looked directly at me once. She was so disengaged she might as well have spoken to my back wall.

I am entering the sixth month of DLA to PIP assessment.

Six months.

And according to this person, I should go through this again every three years.

If I were to write about her in a DWP report, I would say:

‘zero eye contact, rude, abrupt, uncaring, disinterested.’

Two points?

Nul points?

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