Jul 10 2013
47 Comments
Symptoms and Treatment

Why Is MS So Difficult To Describe?

MS CartoonAs if going through the MS diagnostic process isn’t difficult enough, trying to describe MS symptoms to the uninitiated is even harder.

Take the MS hug. Cute name, excruciatingly painful. The first time this happened to me, I was in the office.

The pain came out of the blue, and as I held my ribs in breathless agony, my colleague politely asked why I was rocking in my chair, making funny gasping noises. After I’d told her it felt like a boa constrictor had wrapped itself round my body, she gave me a curious look and continued typing.

Or the exotically named L’hermitte’s sign. Electric shocks in the neck? Maybe it’s all in my head. Uhthoff’s Phenomenon? Try explaining the torture of frying from the inside out, the complete inability to do anything in the heat. The sadness as you watch the world go by from your window, life happening elsewhere, make-up sliding slowly southwards. Or the tragic look I got from my son the other day when he came home from school to find me with a bag of frozen peas balanced on my head.

Tell anyone else you’re heat intolerant (and it’s even got a fancy name) and you’ll get a barrage of ‘Oooooh, me too! Can’t stand the heat!’ I bore myself silly trying to make them understand it’s not just a case of sitting in the shade with a sunhat on, sipping an icy-cold Pimm’s. It keeps you locked in the house, limbs trembling, industrial-sized fan on full blast. With our current heatwave, even my head is trembling so much I look like a nodding dog. Or a weeble-wobble.

What about neuropathic pain? The constant buzzing, tingling, throbbing, burning in my feet and legs. It’s like having mobile phones strapped to my feet, set to vibrate, with a bit of pincushion-y pain mixed in. Or there’s other days when I can’t feel my feet at all.

But the biggie, as we all know, is the teeth-gnashing frustration of describing MS fatigue. No matter how you explain it to other people, there will always, always be someone who says, ‘Oh, I get tired too. I know exactly what you mean.’ Um, no, you don’t. Now, please run into my fist. I’m too tired to punch you.

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Jul 08 2013
8 Comments
My Ramblings

Forty Shades of Grey

over the hillHere’s a quick quiz – just how many signs of ageing are there? Five? Seven? Or, gulp, ten?

Step forward Rachel Weisz who was recently flogging ‘Revitalist Repair 10’, targeting 10 signs of ageing in one overpriced blob of cream. I’m obviously not at all jealous she’s married to Daniel Craig, but I was chuckling when I heard that her TV advert had been banned in the UK after the ‘shocking’ discovery that she was airbrushed for the advert.

So what are these doom-laden Signs of Ageing and who decides? As I approach the sad day when I will be forced to wear a humorous ‘Still Flirty at Forty!’ badge to a local restaurant where the chairs will be tied with ‘Over The Hill’ helium balloons, here’s my ten signs of ageing:

  1. My mum asks me what I want for this milestone birthday. Without missing a beat I answer ‘ a super-duper electric toothbrush’. What?!
  2. I never, ever sit on the floor, as I would need three strong children to help me up and would probably say ‘ooof’ a lot.
  3. I have a sudden, inexplicable urge to visit garden centres. Not only that, I enjoy a nice cup of tea and a slice of cake in the cafe afterwards.
  4. I read those ‘Innovation’ catalogues that fall out of the weekend newspapers from cover to cover. And make a list. 
  5. My colleague has a baby. He is young enough to be my son. Which means I am old enough to be a grandmother. 
  6. I own not one but two pairs of slippers. Comfy. 
  7. I talk to my plants. And they talk back. Honestly. 
  8. I no longer feel it’s appropriate to buy Rimmel make-up. Too….bright.
  9. I circle TV programmes I want to watch in the Radio Times with a special pen. Antiques Roadshow? Tick.
  10. I’m tempted to start listening to The Archers.

I could also say I forget things, I drop things and I have a special non-slip mat in the shower, but I’m blaming all that firmly on the MS. My plan? To age disgracefully, embarrass The Teenager and start investing in control underwear chic black cashmere jumpers, teamed with lots of large, colourful beads. And start calling everyone ‘daahhling’ as I can’t remember their names…

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Jul 06 2013
18 Comments
The Teenager

Blazing Rows…

prefectOur tranquil little cottage has become a battleground, with neither me nor The Teenager willing to give way. There have been tears, sulks and door slamming and I’ve apologised to the neighbours who rolled their eyes and said, ‘Teenagers, eh?’ in sympathetic tones.

He’s even attempted a hunger strike but lasted only until I stocked the fridge with his favourite Müller yoghurts and waved a pizza under his nose.

The cause of all this conflict? His school is adopting a new uniform policy as of September. From the age of four, The Teenager has gone to school in some variation of a polo top and school jumper. Now his high school want to have a smarter uniform so the kids no longer look like over-grown infants and I’m all for it. We got the final uniform list a couple of days ago and he remains distinctly unimpressed.

‘Oh, lovely, you have to wear a blazer!’

‘Yeah, with, like, gold piping. I’m not a girl. I’m not wearing it. They can’t make me. It’s like, rank.’

‘But they wear them in Waterloo Road. Very smart.’

‘Yeah, whatever. Still not wearing it. It’s against my yooman rights’

‘Well, look, you get a nice tie as well! Very grown up. Why’s it a clip on one though? What’s wrong with a proper one?’

‘Like, duh, it’s so we don’t strangle each other. Elf ‘n’ safety, innit?’

And so we go round in circles. He’s trying to organise a boycott for September, but few of his friends are brave/daft enough to join him. The uniform is due to land in the shops within the next couple of weeks and he’s coming with me whether he likes it or not. This may involve an after-school swoop, where I thrust a packet of crisps into his hand, bundle him into the car and lock the doors from the inside.

I have tried to reason with him, but as soon as I started a conversation with the words, ‘when I was your age….’ he huffed and puffed, stomped upstairs and blasted his music out (Oasis, full volume, same two songs in an endless loop).

I will win this argument but the next battle will be trying to take his photograph in his brand new shiny uniform on the first day of Year 10, minus the rude gestures. And there was me thinking the toddler years were the worst.

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Jul 04 2013
22 Comments
Daily Life

Speak Up, Be Heard

PIPSpread the word – cautiously optimistic news – the Department of Work and Pensions are reviewing a recent decision to change the mobility criteria for the new Personal Independence Payment (PIP).

This comes after the MS Society and 50 other charities that make up the Disability Benefits Consortium challenged the strict mobility criteria for PIP and highlighted the devastating impact this would have if it wasn’t reviewed.

For the old Disability Living Allowance higher rate mobility payment, applicants had to prove they were unable to walk more than 50 metres. To receive this enhanced rate under the rules for PIP, this was cut to just 20 metres.

People with MS and other disabilities are now being asked to raise their concerns about these changes. The consultation would like us to answer one question – ‘What are your views on the moving around activity within the current PIP assessment criteria?’

We all know that the particular problem with MS is it’s variable nature. Some people can walk 20 metres one day and yet be unable to get out of bed the next. The very fact people with an incurable illness are being reassessed at all is heartless and the changes are causing unnecessary worry and fear. If a person who has previously been awarded the higher rate of mobility allowance and has a Motability car, they are in danger of losing this vital lifeline if they are reassessed and found not to be eligible under the new rules for PIP.

If you think you will be affected by the changes, you can respond to the consultation by reading it here  (details of where to write to/send an email are at the end of the document) or you can email the MS Society  – campaigns@mssociety.org.uk – and they’ll let you know how you can get involved in the campaign. We need to be quick though – the consultation ends on Monday 5th August.

Anyone who has ever applied for disability benefits knows it is not just a case of filling in a form, nor do we receive free BMW’s as the press would have the public believe in their continued witch hunt against disabled people. If we don’t speak up, we lose our voice.

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Jul 02 2013
16 Comments
My Ramblings

A World Drained of Colour

beigePart of my job recently has been to source disability aids for a bathroom refurbishment. I rose to the challenge and visited a local showroom. Stepping in from the high street, I entered a grim emporium of bandage-beige and clinical white, an environment utterly devoid of style and colour.

Sun-faded posters depicted happy pensioners looking up at their carers, overjoyed to be using a walk-in bath or grab-rail. There were pictures of sunsets and autumn leaves, the subliminal message all too clear.

This is the medical model of disability in all its soul-sapping starkness. I asked the bored assistant for a fold-up bath chair. She waved a hand vaguely in a direction towards the back of the jumbled shop. One sad little model. White, wall attachments, two legs and a seat. The price for this utilitarian piece of plastic? £85. Someone’s having a laugh.

Hesitantly, I interrupted the assistant from her Hello! magazine again to ask what other colours they came in. The blank look on her face was my answer. Back at home, I searched the internet for modern, fun aids. You’ve got to look long and hard. I found cool crutches, funky wheelchairs and loads of brilliant walking sticks but struggled to find semi-decent home adaptations.

The heartening message is, visible aids that are seen in public have been updated – crutches, sticks. glasses, wheelchairs (but at a price). At home, however, where most of us probably spend the majority of our time, the manufacturers have helpfully recreated that hospital vibe, as if you need reminding that yes, you are disabled.

Disability aid design is a dusty, neglected area. I’m guessing there’s no prizes for designing a toilet chair that could actually be fun as well as functional. Perhaps in the shape of a throne, or a racing car? Or stair-lifts that might fitted neatly into a home, rather than looking and sounding like a clunky, depressing piece of functional machinery.

I used to know a young man with a severe disability. He hated having to use a urine bottle at night and  told me he wanted one that wasn’t so depressing looking – something brightly coloured, or designed to look like a bottle of beer. Something, anything rather than what he had. Not too much to ask?

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