Nov 14 2014
4 Comments
Daily Life

Erm, What Am I?

starvingOk, ok, violins out – my chosen career path is, well, dead. Withered. Mothballed and shoved to the back of a cupboard in the spare bedroom next to the Nordic walking poles.

Apart from the fact that there’s a distinct lack of translation jobs in Cardiff, not many companies are inclined to convert their English brochures into Norwegian. And why would they?

And that’s fine. Honest. Gulp. Takk, and all that.

So now, who exactly am I in the grand scheme of things?

Well, pull your Ikea chair closer, for I have The Answer.

I. Am. A. Writer.

I know, strange, huh? We had a new peep on board this week at our latest project. He took in my overalls, my notepad, my, ahem, probing questions about the job. And then he asked me what I did in my real life. Hmm. I stumbled. I stuttered, ‘well, I, like, you know, erm, blog?

‘You’re a writer then.’

‘Erm, ah, no, not really, I, you know, blog, kind of…..’

‘You’re a writer then?’

Oh.

*Pauses for a very, very long time to let this information digest, totally forgetting that I am enrolled on an MA in Creative Writing*

‘Erm, Yeah, s’pose. Never thought of it like, you know, ‘Writer’.

Eek. A writer?

A seductive thought. The clouds, they are very dark and they are bright. And dark! And light again.

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Nov 13 2014
8 Comments
Symptoms and Treatment

Softening The Blow

BountyI vividly remember trying to rummage through my newly-delivered Bounty Bag minutes before my newly-delivered son tried his best (again) to wake up every other baby on the maternity ward.

The nurse told me he was the noisiest baby they’d seen in a long while and I hoped she was joking.

Anyway, the Bounty Bag. A corporate free-for-all where baby-related companies give you a whole stack of freebies and booklets in order to entice you into swearing allegiance to them for evermore. Some people sneer at them, but for me, living in London without close relatives nearby or friends who weren’t falling out of nightclubs, the Bag had magical properties. Someone, somewhere had been through it before and thought I might just like a few tips.

Ethics to one side (nice try, flogging goods to women who had just been through the hell that is childbirth), wouldn’t it be great if newly-diagnosed peeps were handed a bag stuffed full of information and a few goodies to see us on our way?

From what I’ve heard, a lot of us are in the dark at diagnosis. We’ve probably googled ourselves silly, gorged on doom and gloom websites and come out the other side crying into our cornflakes.

So, here’s what I would have included in mine:

  • Lots and lots of booklets from those lovely people at the MS Society and the MS Trust – sanity in the wilderness.
  • A voucher for a months supply of Waitrose ready-meals. And of course, Dominos for The Teenager.
  • Some posh pillar candles (red-rimmed eyes magically disappear in candlelight).
  • A good few bars of Swiss chocolate. And maybe some jellybeans.
  • A large box of very soft tissues.
  • An expensive throw for the sofa.

Disclaimer: MS is individual to everyone so it makes sense to offer bespoke bags….

What would you have in yours?

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Nov 11 2014
20 Comments
Emotions

Mea Culpa

sorryI have lost two very dear friends recently – all my own fault.

Looking back, my behaviour was abominable. One friend, I only called when I was distressed. The other, when I felt ok. Both probably felt cheated and used and I don’t blame them.

This is a very hard post to write, but it has to be said. There’s only so much nonsense our friends will take.

Sure, some of our friends will drift away, unable to cope with our new state. All the more reason to nurture the ones who stayed. Which is where I went wrong, so very badly wrong.

I admit it, I was selfish. It was all about me. I ignored the things they told me about their own lives. I blanked it out, puffed up with MS self-importance. This was happening to ME. End of.

What I forgot in the MS Haze, is that those dear friends have lives of their own, with the same bad news, tragedies, ongoing sadness. In a way, I used and abused their kindness.

I am doing a lot of reflecting. Ongoing. And I am shocked and saddened by the grief I may have put on others in my pursuit of advice and help. In a tiny small way, I took a bouquet of flowers to one of those I had annoyed, just this afternoon. Then ran back in to reassure her that I had blocked her number.  I wouldn’t call again.

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Nov 08 2014
6 Comments
Daily Life

What? So What? Now What?

brain tabsOver the last few weeks, I’ve been speaking with someone who’s recently had an MS diagnosis.

With their permission, and anonymity, here’s what we talked about:

To begin with, I answered their questions about the practicalities of MS – the drugs, the DVLA, etc.

All well and good but it was clear that this person was struggling and trying to put a brave face on it. Like many of us, they had never faced such a seismic shift in their health and the impact it could have on everything in their life.

We talked some more, but it felt a bit ‘woolly’. Unusually, I had a minor brainwave, and thought about my current reflective essay for Uni. How could we harness this and develop a new plan, a reconsidered way of living, alongside reflecting upon and coming to terms with the diagnosis?

The reflective model I use is deceptively simple – What? So What? Now What?

What? – what’s happened? How did you get to this point and what has happened along the way?

So What? – what will happen as a consequence? What will change/stay the same? Which areas have been impacted the most?

Now What? – what can we do next? How can we adjust and adapt to what’s happened? What will the future look like?

As a (very) brief example to ensure anonymity, here’s mine:

What? – rapidly-evolving MS, constant relapses, diagnosis and swift decision needed regarding treatment. Partner leaves, the meanie. 

So What? – bullied at work due to diagnosis, sacked, legal case, drastic change in health, need to find new job. Abandoned by some friends.

Now What? – make sure The Teenager is ok. Work out what I really want to do, i.e. write. Learn WordPress and start blog. Find new job which will fit in to new lifestyle.

The beauty of this is that it allows you to empty everything onto a large sheet of paper, with just a few coloured Sharpies. The ability to pour out everything, all those niggles that float around at night and all those fears is truly cathartic. I wish I had done it back then; life may have been a lot simpler.

And, why stop there? It’s a great way of keeping up to date with yourself. Say, if you do this every year or so and keep your old reflections, it’s a fantastic way to see how far you’ve come. When I wrote my current one out last week, it seemed quite remarkable how much my life had changed, the majority of it for the better. Try it, you may just be surprised…

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Nov 05 2014
14 Comments
My Ramblings

MS Is What You Make It

FuzzyA while back, I never thought I’d write this post.

MS was an ugly intruder, returning again and again, chipping away at everything I once held as true.

It took my health, of course. But it took more than that. It spirited away my social life (who wants a friend who trips over when sober? And cries down the phone?). It stole my son’s transition into teenagerhood – it was marred by worry and fear. It stole my career.

In essence, it took my future. And it tried to take the very core of me, my spirit.

Well, MS, be damned. You can get away with the trembling, the nerve pain, the stumbling. But I will still barricade the gates so you won’t destroy me entirely.

Before anyone takes offence at the title to this post, MS took my father. Way back, before treatment, drugs, MRI’s, 1978. I was 4.

I live in a different era and I believe that MS is what YOU make of it.

I’ve been to hell and back and have still not fully recovered. I live in fear of the treatment not working and I’ve already had a relapse, plus complications (I admit, the over-active thyroid has short-term delights, such as my miraculous weight loss, but it won’t last and the Wotsits are already calling…). My hands don’t work properly and the foot drop is verging on the comical, which my bruises bear witness to. I am covered in them.

MS is horrendous. It sneaks up and unleashes a bewildering array of symptoms on us. But if you can come to terms with the fact that Life Will Never Be The Same, you’re already halfway there (honestly).

Your families may ignore you and you will probably lose friends. You may also lose  your job, as I did (don’t forget, I won the legal case). But. For all that, you will transition into a whole new way of living. You will adapt and you will overcome, to coin a tired phrase. Some of you are happy to say that you have MS, MS doesn’t have you. Well, it does. But! The way you receive and react to that news is the key to living a brighter future. .

We cannot deny it’s a nasty existence. It is right here, right now and it always will be. So we adjust to new ways of living, despite this foul illness.

We can do this, right?

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