Monthly Archives: April 2013

Apr 08 2013
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Daily Life

Stumbling In Style…

MS Trust Shoes 2 MS Trust ShoesThese are quite possibly the best, most stylish, most beautiful pair of flats I have ever owned – the lovely and talented Helena at MS Trust customized them for me after I hankered after a gorgeous pair of high heels she created.

They’re currently living on my desk so I can admire them and I’m just waiting for the perfect opportunity to launch them into society.

The shoes led on to a Twitter discussion about what else we could customize – I suggested a blue hard hat for work? Tagline – ‘When your world crumbles around you, there’s always the MS Trust…’

The Builder thinks that’s a brilliant idea, as it could possibly mean I will do more work, rather than eating bacon butties, texting and pointing out that his measurements are wrong.

Anyway, I absolutely adore my new shoes – they are a work of art. I’m tempted to frame them, but that would be a waste. They need to be seen! So if anyone would like to take me out to show them off, just let me know…

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Apr 06 2013
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The Teenager

Single Parent, Multiple Sclerosis

Our little family has adjusted fairly well to life with multiple sclerosis, but now and again it throws up some major hurdles.

Even though my ex-husband and I are happily divorced and are bringing up The Teenager as well as we can despite the 140 mile distance between us, there are definitely times when it would be handy to have a partner around, or at least in the same city.

I’m booked in to hospital for my second round of Alemtuzumab treatment during the summer school holidays and it’s coming round far too quickly. The Teenager will be at his dad’s for a week as usual and with the way the dates have worked out this year, I will have just one full day to recover at home after three days in hospital before The Teenager is home again. I am panicking. Slightly.

Last year, the Alemtuzumab left me exhausted, weak and under the weather and I had several weeks sick leave from work but I also had three clear days on my own at home to start to recover.

I’m not so much worried about me, but about how The Teenager will feel seeing me lying on the sofa even more than usual. Is there anything more depressing than an ill parent? I tried to have a chat with him about it the other day and he’s promised me that if I buy him enough pizza, he’ll be fine, so here’s my plan to get through the first week or so:

  • Pizza
  • Accept all offers of help
  • When he’s out with friends, have a sleep, so I’m fully(ish) awake when he’s back
  • Encourage/bribe The Teenager to have friends for sleepovers
  • Stock the fridge with lots of good-quality ready-meals
  • Ignore the dust
  • Keep explaining that the treatment will ultimately make me much better in the long-term
  • Pizza

My friend’s daughter has offered to cat-and-house-sit again, so that’s one less thing to worry about. I’ll also organise a huge grocery delivery just before I go to hospital. I know what to expect this time round, so hopefully I’ll be better prepared than last year.

I was feeling very chuffed with my list and plans, then I checked my diary again. Yup, I’ll be turning 40 less than three weeks after the treatment. Now I really am panicking…

(no small violins were harmed during writing this blog post)

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Apr 04 2013
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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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