Tag Archives: DLA PIP multiple sclerosis


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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Less Is … More?

lessFor a couple of months now, I’ve been getting used to a much reduced income, despite fairly similar outgoings.

This will only get worse if I fail to move from DLA to PIP, and drastically so.

With this in mind, I’m tightening the belt even more – if my waist was as small as my budget, I’d be a very happy bunny.

So, I’m squeezed from every possible angle. You can only imagine my happiness when I had a letter through stating that my water bill was now £20 a month instead of £25.60 – due no doubt due to the reduction of Teenager showers and endless washing machine loads.

And the thing is, I’m quite comfortable living with less. I’ve lived a fabulously wealthy life and an incredibly poor life over the years and both have their plus points. However, I would definitely say that having oodles of money does not always equate to happiness – far from it.

In these days of straightened times, kindness comes from unexpected quarters. A friend sent me a pizza. Another friend gave me a plant. And my mum popped down today with a bag full of food, plus a sachet of Dreamies for the cat. Knowing I have £40 to last me eight  days, this is a god-send.

In the news today there is a report that people are spending a fifth of their income on rent. I spend over a third. Well over. It’s by far my biggest outgoing. Council tax, at almost £100 a month, is another significant payment. And that’s before the other bills.

Don’t get me wrong, living frugally is depressing, anxiety-ridden and downright horrific. I’m just about coping at the moment, but that’s with DLA in the equation. Take that away and deny me PIP and I’m in a whole other realm.

It’s weird – I work, pay Council Tax, pay my bills on time religiously every month and yet if I lose DLA, I will be in absolute poverty, rather than genteel poverty as per now. What I fail to understand is that the government plans to get 1 million more disabled people into work whilst simultaneously stripping them of the financial means to do so. Damned if you do, damned if you don’t?

Being disabled isn’t cheap and it’s not a lifestyle choice; I certainly didn’t choose to have MS at 37 and for  it to totally change my life’s path. In an alternate reality, I would (after years of low-paid unemployment to be available for my son) now be a fully-qualified teacher/social worker/lecturer. Well, that didn’t work out.

I’m resigned to MS now, but I’m not resigned to being poor.

Plans are afoot …

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