Category Archives: My Ramblings

Jan 14 2014
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My Ramblings

Don’t Care….

care crisisCare workers are much maligned, and often with good reason.

However, I recently spoke to a carer who threw some light on what it’s really like.

She earns the minimum wage, is on a zero-hours contract and knows that she is at the mercy of her boss.

She can be dismissed at any time, forced to take on extra hours at any time and never knows from one week to the next how many hours she will have. She works with clients who have complex medical problems, is expected to administer medication and frequently has to break health and safety rules.

Here’s just two of her typical daily calls:

7.15am – 8.15 am – use own car to drive several miles, first dropping her kids off at  a friend’s house. In the space of an hour, she will wash and dress the client, strip the bed, make the bed, empty urine bottles, clean up a spilled urine bottle, clean the bathroom, wash dishes, prepare breakfast, administer medication, prepare lunch for later, put laundry on, hang laundry from yesterday, iron a shirt, talk to client, pick them up when they fall, write up notes and fill in medication chart, sweep the floor, put bins out, help client with a daunting letter from social services, reassure client, make a cup of tea.

And all for less than £7.

8.15am – 8.30am – there is no travelling time between clients, so she will be late as it will take her 25 minutes to get to her next client. A 15 minute call (a favourite of care companies, detested by the care workers). Here she will administer medication, prepare a lunch for later, make a cup of tea, wash up, put bins out and talk to the client while filling in even more charts.

And all for under £2.

There is then a 3 hour gap. As she lives 10 miles away and petrol is expensive, it’s not worth her going home (she has no petrol allowance for travel to and from her house). So she parks up and sits in her car.  By the time she finishes work for the day (a couple of half hour calls), she picks up her kids and gets home at 6pm. She has clocked up a mere 5 hours of wages.

With such appalling conditions, who’d be a carer? The responsibility is huge, the rewards minimal. The only winners are the care company bosses who coin it in at the expense of exploited workers. Most carers are dedicated and want to make a difference. Most leave within a year, worn out by a system that doesn’t care.

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Dec 19 2013
8 Comments
My Ramblings

MS Christmas Survival Guide

santa asleepChristmas is the one time in the year us peeps with MS can really blend in.

Over the next two weeks, it will be perfectly socially acceptable for me to nod off at odd times of the day, stumble and talk gibberish. Last Christmas, I fell up the stairs, followed by a round of applause.

However, a little forward- planning is still essential, so here is my quick guide to surviving the festive frolics:

  • Internet shopping – it’s still not too late! I have not had to brave any crowds, queue for hours or fight over the last Christmas pudding. Plus, I have a rather handsome postman I have seen so often I’m sure the neighbours think I’m having a clandestine affair (I wish).
  • Sleep – make the most of this time. No need to explain why you’ve dozed off in front of the telly for the third time that day, or fallen asleep face-down in your turkey dinner. People will laugh rather than gasp. They may even take a photo and put it on Twitter. Instant fame guaranteed.
  • Stumbling/tripping – let’s face it, everyone will be doing a lot of this. It’s practically mandatory. Why not have a festive quiz? If you trip, turn to your assembled family and say, ‘aha! Now was that MS or the extra-strong mulled wine?’ Winner gets the last purple Quality Street.
  • Cog fog – this is especially handy during Christmas. When (not if) a family argument starts and you’re asked if Auntie Doreen really did say that terrible thing about Auntie Doris thirty years ago, just put on your most tragic expression and tell Auntie Dot that you’re a hopeless case, you can’t even remember what you had for dinner yesterday.
  • Extra help – if you’re having a bad MS day, waylay a passing small(ish) child and tell them you want to play a game. Little kids love dressing up and pretending, so why not pop an apron on them and tell them you’ll give them two quid if they play at being a maid, like in Downton Abbey. That way you can have a steady stream of Twiglets, refills, magazines and chocolates delivered straight to your sofa. Plus you get extra Brownie points for entertaining a child for seven hours.

So, I wish you all a very merry (hic) Christmas. Hold your heads up high (with a sneaky peek at your feet), go forth and celebrate.

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Dec 02 2013
12 Comments
My Ramblings

Life Sure Ain’t Like The Movies…

popcornA funny thing happened the other day.

I was lying on the sofa reading a book, plucking Maltesers from a box I’d craftily hidden from The Teenager.

The next thing I knew I had woken with a start, the book (and Maltesers) having crashed to the floor.

This may sound boringly insignificant, but I thought stuff like that only happened in movies for dramatic effect – just like you can see the Eiffel Tower from any window in Paris.

I ranted to the cat after she’d stopped chasing the Maltesers round the floor – how could anyone fall asleep so quickly that they couldn’t put their book down first?

Either explanation is most unpalatable:

a) old age creeping up on me

b) worsening MS fatigue

Mind you, if my life were a movie, there would be a conveniently-placed handsome man who would gently prise the book from my fingers, wrap me in a cashmere blanket and gaze upon my slumbering face before dimming the lights and nestling another log on the open fire.

Furthermore, kindly neighbours would have left a pile of casseroles and lasagnas outside my door during my worst relapses two years ago. They would also have surprised me by putting up my Christmas tree and arranging for an angelic choir to sing carols outside my door, snow falling softly.

On recovery, I would magically spring the money to spend a month somewhere exotic to ‘find myself’. There would be shots of me wandering sadly down golden-sand beaches. Towards the end however, I would be laughing and learning important, life-affirming lessons from the wise natives, arriving back home with a new-found sense of purpose in life.

But life isn’t like the movies. When I woke and found my book and chocolates on the floor, I was cold, I hadn’t started dinner and I found The Teenager hanging off an open fridge door bemoaning the lack of junk food (‘everyone else in school gets to have it, why not me, you meanie? What am I supposed to do with a tangerine?’).

I explained to him what had happened. He was unperturbed (‘mum, you’re, like, old, you know? It’s what old people do, my grandad does it all the time’).

Out of interest, I asked him what he would like to see come true from the movies. He didn’t hesitate – ‘one of those huuuuuuuge American fridges crammed with junk food and my own den in the basement  and……(I stopped listening after five minutes)……

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Sep 29 2013
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My Ramblings

A Day Off From MS

in my dreamsLast night, after being woken in the wee small hours yet again with nerve pain and unable to get back to sleep, my mind wandered.

Just what would it be like to have one full day off from MS? How amazing would that be?

I would spring out of bed, full of beans and head straight for a boiling hot bath, using up my dusty bottle of Matey bubbles. No non-slip bath mat today, no pesky heat intolerance.

After a long soak, I’d deftly apply my make up, managing to execute a perfect sweep of eyeliner. I’d get dressed easily, no fumbling over buttons, no tripping over my feet and I’d be able to wear jeans I haven’t fitted in over two years. And heels! Beautiful heels. How I’ve missed you. I’d put them on and not take them off all day. I would sashay everywhere. I would stride, head held high. No looking at the pavements.

In fact, I’d take the day off work and spend it walking. Just walking, even in heels. And I’d go to cute little gift shops where I’d be unafraid of picking up glass ornaments or bumping into things or small children. I’d find a really hot, really busy cafe and spend a stress-free hour sipping a coffee, people-watching. I’d call up friends out of the blue, suggesting a night out later. I’d know for sure I’d still have the energy.

On the way home I’d do all my Christmas shopping in one go, undaunted by the crowds,  balancing the bags easily, going through my long list from memory. Back home, I’d wrap and label all the gifts then cook a fiendishly complex recipe from scratch. I’d spring clean my entire house. I’d even dig out the feather duster. Then I’d do a whole pile of ironing. And spend a couple of hours weeding the garden, all before slipping in to something fabulous (with my heels, natch) and get ready to go out.

The evening would pass in a happy blur of catching up with long-neglected friends. I’d charm them with my wit and fast responses. I’d remember the punchlines to long jokes, I’d carry five drinks at a time back from the bar.

I wouldn’t come back til gone midnight, falling happily in to bed. Then I’d wake in the wee small hours. With nerve pain…

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Sep 25 2013
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My Ramblings

A Leek, A Thistle and A Diagnosis

flagsThis year we’re toasting the 25th anniversary of our family’s move from Scotland to Wales. Sláinte, Iechyd Da and cheers!

In the summer of 1988, with Bros and Glen Medeiros  riding high in the charts, I played The Proclaimers endlessly on my tape recorder, gulping back tears as I listened to repeated renditions of ‘Letter From America’ whilst  unpacking my boxes.

My Welsh friends now tease me that after all these years, surely I’m more Welsh than Scottish, especially as I now get a lump in my throat when I hear the Welsh national anthem? This got me thinking. Does it really matter if I feel more Welsh than Scottish or vice versa? It’s a bit like MS. Once you’re labelled with it, does it then define who you are?

When I was a pretentious 20-something gadding around Europe, if someone asked me where I was from, I would loftily declare that I was a Citizen of the World. Cringe. I mean, really?

But there’s something in that – I think what it boils down to is a sense of belonging, not labels. When I started my Welsh secondary, once the initial curiosity about me had died down (‘do you have electricity in Scotland?’, ‘why do you sound like an extra from Taggart?’), I found my own place in a group of like-minded people, drawn together by our shared passion for The Cure, Kraftwerk and Doc Martin boots. The nationality label didn’t come in to it.

It’s the same with MS. I’ve lost count of the number of people who say to me, ‘Oh, I know someone with MS, I’ll get you guys together’. Um no, it’s ok thanks. We may be just like any other group of people bound together by a common background, but we all find our own place within that group. Some you get on with, some you don’t.

Like any group though, it has it’s own language. When people with MS get together, they tend to get the basics out the way, i.e. RRMS, diagnosed x years ago, on x treatment. Similarly, when we first moved here, we quickly learned that sannies were called daps, rolls were baps and the Welsh word for carrot is ‘moron’.

What am I trying to say? Just that I may have MS, but I’m much, much more than that label. A Citizen of the World, if you like….

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