Monthly Archives: February 2013

It’s Official – I’m A Trendsetter…

It's fashion, darlingYes, that’s right, the fashion world has finally listened to me – flat shoes are bang on trend for 2013.  Totes amazeballs or what? Crack open the Bolly, dahlings! According to Roberto Cavalli, speaking from his Milan fashion show, flat shoes are ‘cool and it’s all coming from London.’

Well, ok, I may be 150 miles from London but obviously the fashionistas have heard my anguished pleas and are taking up my cause in droves. I was far too busy to be interviewed exclusively for Vogue, but luckily, the footwear buying manager for Selfridges was quoted as saying, ‘It’s a revolution…flats are selling out across every price point.’

After MS cruelly robbed me of my high heels and sashaying walk, I have been resigned to stumbling around in flats, head no longer held high. No one was happier than me when ballet flats briefly flooded the high street, but they’re not exactly statement shoes, are they?

Over the last couple of years though, I have slowly built up a nice little collection of smart flats and casual flats, with a pair of Converse thrown in for when I want to ‘hang’ with The Teenager. He may not let me borrow his SuperDry hoodie ( trying too hard to be cool), but he’s ok with the blue Converse.

Flats to one side, what other heel-less shoes are cool? Sandals, I don’t think so. Flip-flops – have you seen someone with MS trying to walk in flip-flops? Wellies? Er, no. A fellow Tweeter suggested Doc Martin boots and I did try, but they bring back far too many tragic memories of stomping round various teenage haunts, drinking cider and black (do NOT tell The Teenager) and wearing long skirts with mirrors sewn along the hem. The stripy tights I wore with them still haunt me.

This exciting news has therefore reconfirmed our true status – where us MS’ers lead, the fash-pack follows. Of course, they are down-playing my role in this and are suggesting it’s all thanks to the Duchess of Cambridge influencing the new fashion trend, but I reckon Kate’s read my blog and has kindly championed me, bless her.

So, I am off to put together some stylish outfits, accessorised with an array of dazzling flats. I may even do that fashion-y thing of putting them in boxes and sticking Polaroids of them on the front – how divine!

Watch out world, I’ve got my sassy flats on…

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Unexpected Item In The Blogging Area…

I did it. I finally did it.

I have popped my internet grocery shopping cherry. What’s the big deal? Well, regular readers will know I have a love/hate relationship with supermarkets – they love me and I hate them.

A fellow blogger, Steve, possibly exasperated by my constant complaining, kindly offered to send me a £20 voucher offer for Ocado (for non-UK’ers – a very posh supermarket – far too posh for me to visit in my builder’s gear) and yesterday morning, I bit the bullet. And Scottish people never turn down twenty quid.

I got myself prepared. Large sheet of paper, pot of strong coffee and a Sharpie. Ok, jot down all the heavy stuff – cat food, squash, cat food, beans. Then the things I really need – toothbrushes, fish, yoghurt, mince. I was getting into the swing of it. It was time to sign up, log in and go wild in the virtual aisles.

My last attempt at supermarket shopping online was disastrous. I got lost. Then I lost my basket and finally I was off my trolley and I fled, demoralised, bruised and battered by the whole experience. This time round, it was a doddle. I got so carried away, my total had reached over £100 within ten minutes and I hadn’t even added the washing-up liquid.

I ruthlessly went through my trolley, chucking out the 3-for-2 ice cream, an expensive skin cream, coloured straws (no idea), 2kg of pasta and a new wok. Better. Before heading for the check-out, I had a little look through the half price offers and treated myself to some kitchen towel and baby sweetcorn.

Before you can even get to the check-out, they cleverly throw teasing offers at you, but I resisted and I was let through. All paid, delivery slot booked, done and dusted. It took twenty minutes and I was still in my dressing gown, jittery after my third cup of filter coffee.

I feel very grown up and smart. I will never set foot in a supermarket again. Whoever said MS makes you creative was right – there’s always a solution to every little niggle. I have now started a list on my fridge and was dashing back and forth all day, Sharpie in hand, adding things ready for my next shop.

I just hope that when the shopping arrives, there are no substitutes. My friend once ordered a punnet of peaches and found she had been given two tins of them in syrup instead. Not quite the same thing…

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Sick or What?

Adapting to the role of  an ill person is not easy. Society makes it very clear – if you are sick, you must want to get better and you must co-operate with the medical establishment.

In return, society will ‘allow’ you to shed normal responsibilities of work and household tasks for a limited time, until you are better. You are recognised as being in need of care and unable to get better by yourself.

This theory was first developed by Talcott Parsons in 1951, and despite its shortcomings, still holds firm in most peoples minds. But what happens if you have MS, your illness fluctuates and often you are well enough to participate fully in society? Where do you stand then?

MS can mark you out as a fraud. Some things said to me over the last two years:

  • ‘But you look so well.’
  • ‘When are you giving up work?’
  • ‘Wow, you’re drinking alcohol.’
  • ‘I thought you were ill.’
  • ‘Why are you so tired, you were fine yesterday?’

Living as a fairly young person, with a fairly invisible illness renders you an uncomfortable anomaly. I have no standard ‘markers’ of a sick person, no visual clues. People just have to take my word for it, and this is where the tension arises.

I am in a no-man’s land between being well and being ill. I still want the ‘privileges’ that being well and a productive member of society brings – a job, a social life, status, etc. Yet I also need the exemption when I am ill, the extra support and help and many people, and society, would much prefer it if I chose one scenario and stuck to it. I can either be fully productive and keep quiet, or give in and take up the sick role full time.

Other people with MS can be just as judgmental. I once went to an MS support group and felt very out of place and unwelcome. Finally, the organiser took me to one side and gently explained that I made the others uncomfortable. I was talking about work and going out for a meal that evening. He said that this group meeting was often the only outing they had in two weeks. I wasn’t ‘sick’ enough to join their group. I never went back.

What’s the solution? I have no idea…..

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Hospital Bed Booked…

I had a letter a couple of days ago confirming that I’ve been booked in to hospital for my follow-up Alemtuzumab treatment in July. Last year I was in for five days and four nights.

This year, only three days and two nights. Looking back on it, I was a complete hospital novice. So here’s my list of what I will be doing differently this time around:

  • Pack my own pillows. The hospital ones (if you are lucky enough to get one) are super-thin slices of foam. And that’s being generous.
  • I won’t be taking a huge pile of books. I ended up reading only newspapers and trashy magazines, but I did learn a lot about Heidi and Spencer Pratt’s marriage and Cheryl Cole’s beauty routine.
  • Staying overnight in a Neuro Day Unit means you have absolutely no privacy all day. People come and go for tests and treatments, usually bringing a bunch of family members with them. It’s like having a whole load of strangers parading through your bedroom. Must also remember to lie when people ask me if lumbar punctures hurt (they do, I was a screaming banshee).
  • Cannulas hurt like hell too and it stays in the whole time. Must get it strapped up when not in use as do not want to recreate the Psycho shower scene like last year.
  • Much as I loved the regular tea trolley trundling around at all hours, it tastes awful. Will make regular trips downstairs for the hard stuff.
  • Accept all the sleeping tablets I can get my hands on – hospital beds are uncomfortable, some lights stay on all night and there’s strange people wailing down the corridor.

I will be a calm, confident patient. I know the score this time round. Still a sobering experience though, when the reality of MS really kicks in, far more than just putting up with symptoms on a day to day basis. This is real. The doctor says so.

So when everyone else is packing for a week in the sun, spare a thought for me as I pack my pyjamas, fluffy slippers and selection of snacks to munch on (Jelly Babies, dried banana slices and cookies). God knows what I’ll look like walking through the hospital corridors on my way to book in, struggling with a huge bag and two pillows under my arm.

One other point – do hospitals have wi-fi? How will I stay up to date with my blog and Twitter??

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Perks of the Job

An unexpected bonus of working in other people’s houses as a builder’s mate is not the coffee on tap, the bacon butties or the biscuits.

I’ll let you into a little secret – it’s the sneaky pleasure of having a nose around.

Me and the builder don’t talk about jobs in terms of what work we actually did there, it’s more, ‘oh, you must remember that one, you know, the one with the awful, red, flowery wallpaper and bizarre yellow sofas’ or ‘the one with all those very odd mirrors in the bedroom.’

It’s great fun, passes the time of day and you can tell a lot from people’s houses. Does that make me sound awful? C’mon, we all do it, don’t we?

I particularly like working in houses with lots of books and am vaguely suspicious when they’re conspicuously absent. Many a happy coffee-break has been passed looking through the shelves thinking, ‘ooh, read that’ or, ‘oh, that looks interesting.’ Same for artwork and pictures. And I adore family photographs.

We’ve worked in some creepy houses though. One had a bedroom stuffed full of life-size dolls. The owner was in her 30’s. In another, there was a massive model railway track taking up the biggest room upstairs, the bathroom we were working on was tiny and the owner worked nights, so all we heard were sinister snores from down a very and gloomy dark corridor.

On the upside, I’ve picked up some fabulous home decoration tips. People have the most brilliant ideas. My favourite was the huge hallway, a large square room basically,  painted entirely in black. Sounds hideous, but it was stunning. My hall is the size of an outdoor toilet so I don’t think I can steal that idea. And I definitely couldn’t fit in the matching chandelier.

Anyway, we had a very productive day yesterday pulling out an old bathroom suite ready for the new one. Then the builder asked me to pop a few tiles off and handed me a hammer and chisel. Easy. Four tiles in, there was an anguished cry. I popped my head round the corner to where the builder was standing. The entire other side of the wall had cracked.

Change of plan – we’re plastering today…

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