Category Archives: My Ramblings

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 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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Jun 30 2013
80 Comments
My Ramblings

Do You Have MS? Take The Quiz!

quizThere’s a good reason our neurologists and MS nurses warn us not to google MS. A tweet went round recently with a link to a website that promised to diagnose you with MS or not, just by answering 12 simple questions (here).

I took the quiz, with the knowledge I have already been diagnosed with highly-active relapsing MS. The website’s Androctor Anna, however, gave me unexpected news – ‘I screened you for multiple sclerosis. Based on your answers, you don’t fit the diagnostic criteria for the screened disease.’

I admit, when my neurologist first diagnosed me with Clinically Isolated Syndrome, which may or may not lead to MS, then told me not to look for answers on the internet, the first thing I did when I got home was pour myself a stiff drink, boot up the computer and surf. Endlessly. I’ll bet most of you guys did too.

I can laugh at these quizzes now, but if I had found them back then, would it have been a more serious matter? Would it have reassured me? Through trial and and a lot of errors, I eventually stuck to only two websites – The MS Society and the MS Trust. Friends were just as naive as me though – my inbox was flooded with links to various websites. One admonished me for drinking diet Coke, whilst others offered amazing herbal cures or secrets to beating MS, if only I paid hundreds of pounds for the privilege.

More worryingly, other websites chastised me for putting sun cream on my son. By ‘denying’ him vitamin D, I had unwittingly increased his chances of developing MS. And it’s not just internet websites. Have a look at some of the books for sale about beating MS:

  • The Hippy Guide to Eliminating Multiple Sclerosis (Sugar Diet Illness)
  • Talking Back to MS – How I Beat Multiple Sclerosis Using Low-Dose Naltrexone
  • Fighting the Dragon: How I Beat Multiple Sclerosis

I’m sure some of these books have merit, but MS is still an incurable disease. Providing false hope through books, diets or remedies is cruel. MS can be managed, not cured. And are we under pressure to fight back at all costs, rather than concentrate on disease modifying drugs and adjusting to a life with MS?

One thing is certain though, where there is illness, you can be sure there are people out there making money off the back of it.

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May 31 2013
23 Comments
My Ramblings

What Not To Say To Someone With MS

Cardiff-20130530-00192When I was going through the whole MS diagnostic process, people said the strangest (and hurtful) things to me.

It was hard enough coming to terms with MS, far less finding smart replies to insensitive comments. Everyone has an opinion and they can’t wait to give it to you.

Even after diagnosis, the comments still keep coming, perhaps because MS is, for now, a mostly invisible illness for me and trying to convey the symptoms to other people is as difficult as counting brain lesions without an MRI.

So here’s my handy print-out-and-keep list of what not to say to someone with MS. Give it to all your newly-diagnosed friends to prepare them for the onslaught and before long, they’ll have ticked every one, several times over:

  • You need to stay positive.
  • You’ll be fine, they can do wonders these days.
  • My auntie/friend/great-uncle Billy had that, and they’re great now.
  • When are you giving up work?
  • I’ve heard Diet Coke and chewing gum can give you MS. 
  • You get to sleep a lot? Wow, great symptom, wish I had that. 
  • Hey, it could be worse. 
  • But you look so good!
  • If you get a blue badge, can I borrow it?
  • Have you tried (insert any number of miracle cures here…)?
  • You’re so brave.
  • You’re cancelling our evening out…AGAIN??
  • At least you don’t actually look disabled. 
  • You’re not using that old MS excuse again, are you?

So what should they say? Best piece of advice is not to presume things, just ask me questions. Ask what it means to me and my life. Everyone’s MS is different.

And if you don’t know what to say, say nothing. Just give me a hug and crack open the chocolate….

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Apr 04 2013
2 Comments
My Ramblings

The Kitchen Sink Philosopher

I’m working with the builder on a major kitchen refurbishment. As my work mainly involves making coffee, doling out biscuits, trying to decipher architectural drawings and sweeping up, this leaves me a lot of time for random thoughts.

The other day, I realised that a kitchen re-fit is an apt analogy for coming to terms with MS. Bit of a leap, but honestly, hear me out.

Ok, so the old kitchen is a bit tired and creaky but seems to function well enough. Until it doesn’t. You gut the whole thing out, uncovering problem after problem. Dark corners are exposed, dodgy pipes, rotten bits of wood supporting entire worktops.

A bit like discovering your body has hit the ‘error’ button repeatedly and you notice something is drastically wrong. Tests and probings uncover even more problems. When your life is completely dismantled  like an old kitchen, you can either stay buried under the debris or rebuild your life in your own, new way.

So, the best kitchens, and lives, need solid foundations. You need people you can trust to help you – no cowboys, no fair-weather friends. Get rid of them. The next bit is re-building the kitchen and your life to your own specifications. With expertise and support – be it from builders, neurologists, MS nurses – you get the best results.

Finally, with your new life and kitchen in place, comes the fun bit, choosing all the optional extras. Trying something new, making new friends, changing jobs, taking up that hobby you always said you’d get round to. The secret is all in how it’s put together.

If I had to take one positive thing out of being diagnosed with MS, it’s the chance I had to fundamentally reshape my entire life. It’s still my life, it still does what it says on the tin – just as a new kitchen is still a kitchen. The difference is, every component has been changed. I have a deeper relationship with my son, a better job, a whole bunch of new friends, I’ve tried something different (blogging, Twitter, standing up for myself). The dreadful symptoms to one side, my life now is more emotionally fulfilling than before.

The dark days are behind me for now, but I know if they come back again, my foundations are strong enough to withstand them.

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