Category Archives: Daily Life


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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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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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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Sketching Out The Details

ahaLife is so hazy at the moment, everything put on hold until I hear from the DWP and their assassins assessors.

It’s a weird feeling; a bit like an MS relapse, when nothing is real and everything hurts.

PIP has taken over my life, as has peering into tiny details I normally prefer to gloss over. Yep, sounds just like a relapse, a DWP-sanctioned relapse?

Anyway, life continues for now; work, home, rest, sleep, work, home, rest, sleep. It doesn’t usually leave much room for any form of excitement. Until today, Christmas Day.

I woke up around 13 minutes before The Teenager, at 6.45, made a cup of coffee and looked around my house, as if for the last time.

I do this every day since the PIP forms, but today had a special poignancy. I’d ordered a home-cooked Christmas Lunch for Two, bought a big box of crackers and had dug out decorations and strings of fairy lights. It wasn’t the advert-perfect Christmas, but it worked. I think.

In amongst a wonderful day spent with family and friends, I received really thoughtful gifts which almost made me believe there could be a future beyond the DWP’s decision:

Beauty: this is always amazing as I normally feel so fat ‘n’ frumpy, having packed on the weight since Grave’s. My mum, brother and younger sister all gave me gorgeous gifts. I just have to embrace my size …

Practical: The Teenager gave me an Amazon voucher to buy books with. Perfect gift, my Wish List is long. My friend gave me an Amazon Echo, to train it to remind me to take my meds (he knows what it’s like when I don’t) and get up to speed with the news.

Inspirational: I was given two beautiful sketch pads and a pack of pencils. Yep, I’ve joined a Drawing Class in January.

I have no idea why, a totally impulse decision. I haven’t drawn anything since A Level Art; I think it’s a case of the orchestra playing on when the Titanic’s going down?

I want to believe there is still a normal life after this. Probably smaller, narrower and more careful than before, but still, some kind of life?

In the meantime, we are teaching Alexa the Amazon Echo to miaow and answer utterly random questions. She’s unfailingly polite; I asked her what she thought of the DWP and she said, ‘I don’t have an opinion on that.

Unlike me …

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PIP Posted – The End of the World As I Know It?

clockIt’s done. It’s been sent. And the clock starts … NOW.

After being given a Lifetime Award for ‘Disability Living Allowance’ (as MS is, dur, incurable. Ask anyone!) , I have now sent off my ‘Personal Independence Payment’ forms.

My DLA payments will stop when a decision is made about PIP. I could get lucky, but so much for ‘lifetime’.

But then the Powers That Be have a curious idea of what exactly constitutes a ‘lifetime’. Perhaps they were hoping I would have popped my clogs, rather than popping the new forms in the post?

Well, I’m still here, but only just. I guess anyone would feel a little anxious after writing about the most intimate aspects of their life and sending it off to a random stranger in an unknown office? And not only that, someone who will be paid a bonus for not allowing me the benefit?

I have had to write about stuff no one else knows. And I had hoped it would stay that way. Not even my trusted neurologist or MS nurse knows the half of it. If I had another half, they wouldn’t know even a quarter of it.

So, there’s me, laid bare. And now I wait, and make contingency plans. If I am turned down, I have the right to appeal (the whole process is quite complicated and I’ll have to read up on it over Christmas), but basically, any payments will stop.

And therein lies the problem. No matter what way I look at it, no one can survive on a deficit of £75 a month. Even though I still work. It’s beyond reason. Sure, I can pay my rent, the council tax (a punishing £96 a month, even with a single person’s discount), utilities and phone. That’s even before food.

So, there’s me, laid bare. I am writing about this to highlight the stark reality of many of us facing such drastic cuts to our income. Even before this change in my circumstances, I was barely scraping the poverty line. And still working.

I am crossing everything for a miracle, that perhaps my lifetime award will remain a lifetime award. In the meantime, I’ve been joking with my friend that I could live in a camper van on his driveway.

When I say joking, I mean, that sad, melancholy form of a joke, when actually, it means something much more serious.