Category Archives: Daily Life

Mar 25 2018
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Daily Life

PIP Off

PIP has taken over six months of my life. And I will be reassessed every three years.

Because MS just gets better and better, dont’cha know?.

I first got the ‘invitation’ in October last year.

And now we are facing April, and I’m looking to compile a Mandatory Reconsideration.

The meeting the Assessor described is something I don’t recognise at all. Were we in the same place? Was she actually present? Or did she in fact have her head down the whole time, cutting and pasting paragraphs?

She was angry and upset and willingly told us we were her last on a list of six for that day. Oh, and she had been an A&E nurse, so knew all about MS.

Think for one moment how much detail you can achieve of someone’s life with MS in 55 minutes, excluding greetings, setting up a laptop, asking, leaving?

Yet apparently they can, they know you inside out, they know everything about your life with MS.

In 40 minutes.

According to their own guidelines, a ‘snapshot’ of life should not be a guider in a DWP decision. And, in fact, neurological, incurable illnesses such as Parkinson’s and MS are decreed unnecessary for a face to face assessment.

But still it happens. I’m not the same person I was six years ago, but under new guidelines, I am better, recovered, cured.

Huh?

Yet this less than, shall we say, 40 minute, assessment, could be the difference between independence and complete reliance upon the state.

I want to keep working. I want to stay engaged. But this takes the biscuit.

What do you hope to achieve by stripping us of our lifelines?

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Mar 20 2018
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Daily Life

An Invitation To Naidex …

I was asked to become an ambassador for Naidex, but sadly I’m unable to travel to the event.

However, I’ve looked in to it and It seems pretty exciting, so here’s some more about them (as always, I haven’t been paid to mention an external event/product – it’s part of what makes this blog so special!)

Naidex is Europe’s most exciting event dedicated to the disability, independent living and healthcare professional sectors. In the wake of the huge success of the most recent instalment of this esteemed and long established event, Naidex will return for its 44th year.

Taking place at the NEC Birmingham on the 25th and 26th April, this esteemed event provides cutting-edge exhibitors, world-class CPD accredited seminars, live demos, 1-2-1 advice and unparalleled networking opportunities, over two unforgettable days. And it’s free to attend!

Since taking over this powerhouse event in mid 2016, PRYSM Media Group have injected diverse content, expert speakers and 20 years of experience in event organisation, and it hasn’t gone unnoticed. Attracting thousands of public, trade and healthcare professional visitors, Naidex has regained its momentum and is back on the map as the event for the disability sector.

With an increased floor plan, and running alongside the Dementia Care and Nursing Home Expo, there is no limit to the reach of this incredible event. PRYSM Media Group will be resolutely nurturing and developing Naidex leading up to the event, to ensure that old favourites such as the Mobility Test Track and Sport Demo Arena are refined and focused, and brand new, never before seen components will motivate and awe a cross section of forward thinking, international delegates.

Naidex will realign the disability sector, propelling it into the future of inclusion, accessibility, empowerment and efficiency. If you have a disability, live with or care for a disabled person, or are operating in the disability sector, this event is absolutely imperative for you.

Register for your FREE ticket on naidex.co.uk!

Mar 13 2018
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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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Feb 23 2018
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Daily Life

Alien?

herniaAt first, I put it down to pasta.

Then croissants, lattes and wholegrain rice.

It started with a slow but distinct rumbling and gurgling in my stomach and I thought no more of it.

Until it started to grow.

The upshot is, I have a hernia. I mean, what? Huh? How?

I’ve been to my Doctor and I’m waiting for a scan (‘the same one you get when you’re pregnant. You’re not pregnant are you?’ chirruped my Doctor, as I chuckled), but this lump in my stomach doesn’t seem to want to wait and grow at a semi-decent rate  – it’s morphed from a cute little egg-size into a full-blown grapefruit in the space of weeks.

And it moves. Even the Doctor was impressed, and she’s probably seen everything, warts and all.

Of course, as with MS, I’ve been inundated with horror stories – aunties and uncles who ended up strangling their hernias or being strangled by them, hernias that popped, hernias that led to … more hernias. There’s even support groups out there, filled with more horror stories, along with some excellent advice (I am awaiting a hernia support belt – extra strong – as I write).

To be honest, it’s uncomfortable in the extreme. I may as well have a brick strapped to my stomach. I look weird in the mirror, my podgy belly is still there, but now with a pronounced lump on top of it.

In a bid to embrace this unexpected addition to my already raddled body, I’ve decided to name my hernia Phyllis. My MS has many names, most of which are too rude to publish. More often than not, it’s a malign shadow – the exact replica of my body, but completely different when it moves.

And that’s the great thing about hernias! Yup, there is one. It’s got a definable path. I know what to expect. I’ll most likely have a quick operation, where the Doctors open me up and squish everything back inside then staple me back together. Or strap me up with gaffer tape. I don’t mind, I’m easy.

It’s refreshing in a way. Like having a cut I know will heal. Or a headache I can take a tablet for. So although it’s dominating my life at the moment, it’s temporary and it will go.

Wouldn’t it be amazing if we can one day say the same for MS?

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Feb 02 2018
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Daily Life

PIP PIP HURRAH …

pipWell, the forms are in and the date’s been set for my face-to-face PIP assessment.

Do I spend the next couple of weeks fretting and worrying?

I did that yesterday and ended up a nervous wreck, my brain fit to explode. I can’t live this way and I’m not ready to give up, not just yet.

My MS is my MS. No one knows it better than me and only I know what it’s taken from me and what it continues to take, bit by bit, like some insatiable beast.

In the back of my mind, there is always that alternative; give in, give up. Admit defeat. Believe me, I’ve been close far too many times to count. It whispers in my ear. I’m there right now, teetering on the edge.

Everyone with MS knows that we just have to take each day as it comes. You can go to bed one evening, congratulating yourself for a ‘good-ish’ day (which to anyone else, would be pretty dire) and be on the floor (literally) the next. We take nothing for granted.

PIP is nothing to celebrate; the title of this blog is of course heavily ironic. MS is still incurable. I still spend far too many days alone at home, pinned down by endless symptoms. My life has shrunk to a fraction of its former size. Will I be able to convey this? I truly hope so.

Anyone going through this PIP exercise is aware that you have to focus entirely on what you cannot do, and for some of us, this is a brutal and cruel wake-up call. Over the years we adapt and accommodate each limitation, perhaps not noticing until all those limitations builds up to a traumatic picture of loss. In some cases, like mine, MS appears overnight with a massive relapse, affecting speech, balance and cognitive functions all in one devastating blow.

I had no time to adapt back then and the change was instant, with every area of my life affected – bye-bye job, bye-bye partner. In short, I am battle-scarred, and this is yet another battle.

I am scared. There, I’ve said it.

Actually, I am terrified. The stakes are pretty high and I am trying to block out what could happen. So, to end on a positive note, in other news:

  • The Cat seems to be cured of her flea-bite allergy. Yay. She has also overcome her resistance to a basket I bought her in a ‘Pets At Home’ online sale. After ignoring it for weeks, deliberately sleeping right next to it, she is now in it, and loving it.
  • The Teenager has popped home a few times to use my washing machine and play loud music. I have ear plugs, it’s fine.
  • The Boss brought over two huge boxes of chocolates last week, when I was off work and feeling poorly.

And there was me hoping to report an astounding weight loss …

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