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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Apr 02 2013
4 Comments
Work and Studying

Backing The Bullies

This Summer, The Enterprise and Regulatory Reform Bill will be introduced with Vince Cable, the business secretary, stating that ‘people who work hard and do the right thing (will be) rewarded.’

Sounds fair? Dig a little deeper.

Staff who feel they’ve been unfairly sacked will find it much more difficult to raise a case – there will be a cap on compensation for unfair dismissal and new charges for bringing a claim.

This is on top of the time employees have to work for their company before they can file an unfair dismissal claim – a shocking rise from one to two years.

As many of you will know, I was unfairly dismissed from my job last Autumn for having MS. Thankfully, I had worked for just over two years and recently the case was settled in my favour. However I know of people in low-paid jobs who are routinely ‘dismissed’ from their jobs right before the two-year cut off, only to see those same jobs quickly re-advertised.

Until now, taking a case to a tribunal has been free. Once the bill is passed, the proposed new fees will be £250 for lodging a standard claim and a further £950 if it goes to a hearing. How many people who are sacked can even contemplate these charges? And with legal aid being drastically scaled back, few will be able to fight back.

Even more Orwellian is the introduction of ‘protected conversations’, where an employer can take you aside out of the blue, offer to pay you to leave and you won’t be able to use anything said in the discussion as evidence in an unfair dismissal claim (discrimination cases are exempt from this). This protects your employer, not you. Presently, employers only have this protection once a formal dispute has already been raised regarding your performance.

For people already fighting to keep their jobs in the midst of a recession, especially for those with a disability, this is devastating news. Bullying bosses have been handed even more power, and this time it comes government-backed.

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Mar 31 2013
4 Comments
Emotions

Cutting Ourselves Some Slack…

The last blog post brought up some interesting comments. I wrote about being too hard on myself for not being able to do everything the same way as pre-MS and it seems I’m not alone in this.

I’ve been carrying on as if everything is the same as before, leading only to anger and frustration when things don’t go according to plan.

Take the other night. The Teenager was away, I was all dressed up in my arty clothes and jewellery ready to hang out in an  arty wine bar with a friend. So far so good. I was feeling on top of the world. I was doing what everyone else takes for granted.

Two small glasses of wine and a couple of slices of caramelised onion  and rocket pizza later, I was ready to swap my flats for slippers and settle down for a night in front of the telly. I went home incredulous at the early hour and sought solace in a family-sized Bubbly chocolate bar, but it did little to assuage my feelings of sadness and anger at being such a lightweight.

Time for a re-think. MS smashes into our lives, obliterating everything in its path. We can go under or resurface, tweaking our lives in new ways.

I may not be able to go out as much, but when I do, I make the effort to hang out with true friends, the ones who’ve stuck by me through it all. I might not be able to (or want to) schlep round the supermarket, but oh, the joys of Waitrose online shopping certainly make up for it.

Housework? Clever lighting and candles hide the dust. Stuck on the sofa, pinned down by MS fatigue? Scrolling through Twitter on my phone, connecting with similar MSers across the world makes me feel far less alone. The Teenager has more of my undivided attention as life has slowed down.

MS makes you reevaluate your life. What is truly important? What will make me happier and more fulfilled? How can I improve my life despite MS?

We are all doing just fine. Most of us are still juggling everyday life as best we can as well as living with a serious neurological illness. We should be proud of ourselves. We got knocked down, but we get back up again. And again.

A big high-five to everyone.

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Mar 29 2013
11 Comments
Daily Life

It’s Beginning To Look A Lot Like Christmas…

The shops are full of chocolate and cakes, magazines are stuffed with recipes, we’ve got two bank holidays and the kids are bouncing off the walls with excitement and e-numbers. Easter is rapidly turning into Christmas Mark II.

I’m not complaining. I love Easter. So much so that I put up my Easter branches (in lieu of a tree) weeks and weeks ago. I’m looking forward to lazing on my sofa watching ‘Gone With The Wind’ for the 27th time, pausing the telly only to hunt out more chocolate.

(Handy hint for MSers – don’t bother buying those teeny-weeny chocolate eggs wrapped in foil. If your hands are dodgy, like mine, the teeth-gnashing frustration really isn’t worth the effort. Just buy several large ones instead).

Anyway, The Teenager is away for a week, so it’s just me and the cat rattling around the house. The laundry basket is empty, the fridge is fully-stocked and I am going to use this time as a period of quiet reflection. I have decided to re-hash my New Year’s resolutions, giving myself another chance to fail at unlocking my true potential.

My resolutions, in no particular order, are: eat less, exercise more, try new things and learn how to make a decent Hollandaise sauce. My emotional resolution is to stop being so hard on myself. I get frustrated and angry when MS fatigue drives me to the sofa yet again, when I bale out on friends or have to go to bed early. I still raise my son, study, work and run a house, so maybe I should cut myself some slack.

It’s strange, but sometimes I forget I have MS. I just think, oh, that’s the feet buzzing again or here comes the fatigue and whoops, nearly fell over there. It’s become such a part of my life and it brings me up with a sharp shock when I think, ‘oh yeah, I’ve got multiple sclerosis.’

So this Easter, with The Teenager away, I am going to indulge myself. I will be meeting up with friends (fingers crossed), reading trashy novels and magazines, trying out new recipes and chilling. I am going to be kind to myself, something I have really neglected to do recently.

Happy Easter!

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Mar 27 2013
15 Comments
My Ramblings

Waking Up In La-La Land

The first thing I do when I wake up in the morning is mentally scan myself, checking for any sneaky MS symptoms before stumbling my way to the shower.

Then it’s feeding the cat, flinging a couple of Weetabix at The Teenager, organising schoolbag/handbag, meds, coffee, make-up, to-do lists, washing up, sorting laundry, more coffee.

All pretty normal? A scene played out up and down the country?

Nope. Helena “I don’t get out of bed for less than $10,000” Christensen was recently plugging her latest lingerie collection and put her name to an entire article about underwear with some sage advice for us lesser mortals.

She suggests creating a ritual out of selecting and putting your underwear on by lighting a candle first, as ‘there’s something about the scent and the low flickering light that’s good for early starts.’  Bizarrely, she confesses she never has time to find matching socks or underwear, but finds it ‘inspiring’ to mix pieces. So that’s alright then.

Helena, love, it’s simple really. Ditch the diptych candles and hey presto, you’ll have time to find your matching socks.

Anyway, once you’ve successfully completed the tricky task of selecting your underwear, another person with too much time on their hands, Calgary Avansino (no, me neither)  recently had a three page spread where she shares her breakfast smoothie recipe with the world.

The twenty ingredients include chia seeds, coconut water, baobab powder, bee pollen, lacuma powder, maca powder, frozen kale and half a courgette. Oh, and some mint leaves which she keeps a stock of in her freezer. No doubt she grows the stuff herself in her specially-designed herb garden.

She is beautifully photographed in her fabulous kitchen, hair perfect, designer dress and high-heeled shoes on, wrists laden with artfully-chosen jewellery and surrounded by rustic bowls of fruit and vegetables, a vast array of tubs and jars and a cute kid with silver shoes on.

Now, I have nothing against Helena promoting her underwear or Calgary plugging her website per se but what I do object to are the endless unattainable ‘lifestyles’ us normal women are bombarded with on a daily basis. Don’t these people know anything about real life? Most of us wake up worried about money, jobs, MS – not whether our housekeeper has re-stocked the candle supply or if we’ve run out of bee pollen….

p.s. Do tea-lights from IKEA count?

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