Monthly Archives: November 2014

Nov 08 2014
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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
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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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Nov 03 2014
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Symptoms and Treatment

MS Is Still Crap

evil laughI’ve spoken with a few people recently who have asked, ‘are you really so chilled about MS now?’

‘What’s happened to all the dark posts you used to write? And if you’re on something, can I have a bit?’

Hmm. Tricky. I sometimes feel that if I let the dark stuff back in, I will never leave the house. In a lot of ways my life is more fulfilling now than before. I’m far stronger (in mind, not body), I’m doing something I love with my Masters course and I am probably a kinder, more tolerant person.

However, there is definitely something in what they say. I admit, I still wake up in the wee small hours, gripped by a terrifying fear of the future. Every time I trip or stumble over my words, I am reminded that my life now will always be defined by these details. Heck, I even have plastic wineglasses.

I’ve had an angsty time at Uni, punctuated with inelegant falls and a very real dread at failing. My brain just doesn’t work the way it used to. Searching for the right word is charming in a French-language film, where the beautiful young woman pauses between cigarette puffs, but utterly soul-destroying when I struggle to find the word ‘paragraph’ at a tutorial at the age of 41 with wrinkles and an undying love of bacon butties.

So, yes, MS is still crap, in all it’s devious glory. It invades every area of my life. Currently, it’s shoving me around. Next week, perhaps the nerve pain will crank up, who knows? This afternoon I was supposed to finish my essay (deadline 5pm Wednesday). Instead, I fell asleep, in the middle of watching a very interesting discussion about which colours to wear this Winter.

My newest medical annoyance is trigger finger. Funnily enough, I noticed it in the wee small hours as I was lying in my bed pretending to be asleep in case the cat bounced on my face, yelling for an early breakfast. I flexed my hands and two fingers stayed the same, crooked and weird. I did the same thing and they stayed the same. Strange, and a little bit worrying.

So of course, I got up and googled MS and trigger finger after feeding the cat. There may be a link between the two. Or there may not be.

MS is crap and it always will be. The only thing that will change is my attitude towards it. And, the upside is, when I woke The Teenager and showed him my dodgy trigger fingers, he was actually rather impressed in a ‘ewwwwww’ kind of way. It doesn’t take much.

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Nov 02 2014
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Symptoms and Treatment

Trippin’

no stumblingYup, I’m tripping, full on tripping.

Not the cheeky little stumbles outside a shop or the blasted foot drop by the car when I grab the handle and…..fall to the ground.

Nope. This is the time I really should wear my, ‘I’m Not Drunk, I Have MS’ t-shirt.

I’m tripping all over the place, and it’s embarrassing. I crashed into a wall (a wall) at the end of a lecture last week. Fail. I fell over in the newsagent’s, ‘blimey, these weekend papers get heavier every weekend, huh??’ Fail.

I took Halloween goodies to the nephews and tripped over a stray pebble. Meh. It’s getting less and less funny, if it ever was.

Why can’t I have an illness where I look completely normal? If there is such a thing.

I seem to have this weird, stompy walk, a bit like the models in Paris do on the catwalk, one foot overlapping the other. Difference is, they keep on going. And turn. With me, I overlap once and whayhey, I’m gone. Like Naomi Campbell without the, um, model looks.

It’s all the more desperate for me as I used to walk in heels. I know, me! High heels. I can’t speak of inches without wincing. Italian, finely crafted leather. Bee-Yoo-Tiful. Believe it or not, it has been remarked that I (used to) not only walk, I saaaaashay(ed). No longer. I wear flat boots for daytime and flat boots in the evening. In short, meh, frumpy.

I am often found staring at women in heels, with a longing bordering on the weird. D’ya see? Did Ya? Her??? In those – solemn, light a candle- heels? No?

Those days have long gone and as I take out my delicately-embroidered handkerchief in black, I regret. All those days I thought I looked absurd, ridiculous in high heeled boots, opaque tights and denim shorts, striding across that bridge in Austria.

If I could do it all again, I would.

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