Monthly Archives: December 2014

Dec 11 2014
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Symptoms and Treatment

What Do I Do Now?

mazeI had an appointment with my wonderful MS nurse yesterday. The situation as it stands is: I was diagnosed with rapidly-evolving MS and have had two courses of Alemtuzumab, just before NICE licensed it for MS patients.

They recommend only two courses, whereas there have been people who have had a third or fourth course before NICE. Hmm. Can I have a third?

Please? Pretty please? I won’t complain about the hospital food?

Well….. Oh. Can I take anything else? I had a relapse in February?

Well, there is Tecfidera.

Yay!

But this Trust won’t give you it. Oh. Any new problems? The nerve  and muscle pain in my legs has increased terribly. Every single evening, I’m in agony. Thank heavens for my automatic car, lol (this is where, for some bizarre reason, I imitate driving a car).

Well, there is Sativex, licensed for use in Wales.

Yay!

But this Trust won’t give you it.

Oh. You can see where I’m going with this.

I asked about Tysabri. No good, as I’m now – thanks to Alemtuzumab – not deemed as having rapidly-evolving MS. Vicious circle? So what are my options? At the moment, purely symptomatic. I don’t qualify for any disease modifying treatments.

My health is deteriorating. I know it shouldn’t, given the Alemtuzumab, but I also shouldn’t have had a relapse seven months after my last treatment. Don’t get me wrong, without Alemtuzumab, who knows where I would be now, and I will be forever indebted.

I pleaded my case: it’s only thanks to this medication that I am still working, still taking cheek from The Teenager, have enrolled in further education. And still  manage to push the vacuum round every now and again.

No go. I left, by way of the WHS outlet, where I bought a trashy magazine to cheer myself up. Got to the car park and realised I  had left my card in the payment machine in WHS. Schlep back, cry a little when talking to WHS member of staff who finds my card. She says she sees it all the time. I buy a chewy healthy bar and leave.

Get back home, letting it all sink in. I had explained to my lovely MS nurse that I felt I was up against an egg-timer and  my time was running out. Could I see The Teenager through his horrible Nirvana stage and get him into uni? Would he ever get his hair cut? Would I complete my Masters? Without my beloved Amantadine, which combated my fatigue, I felt as if I was back to square one. Like an evil Monopoly game. Do Not Pass Go. Go Straight To Jail.

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Dec 07 2014
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My Ramblings

Excuses, Excuses

excusesHmm, a bit of a controversial post, so if you are of a nervous, and/or trolling disposition, click away now.

I’ve been thinking about a whole range of people I’ve met over the last few years; people who’ve had strokes in their 40’s, people who have faced tremendous adversity and of course, people with MS.

Taking MS for example, as I kind of know a bit more about that than other illnesses. I’m not talking about newly-diagnosed people – I was an absolute train wreck for over two years  (and some would say I still am, but in moderation) – but people who  have had time to adjust to MS and all it entails.

You know them – ‘Ah, no, couldn’t possibly do that, MS, you know?’ or ‘would love to, but can’t, MS’. Or even, ‘what do you know, my MS is sooooo much worse than yours’. I’m not talking about people who have a drastic decline in health. I’m talking about the majority of us who live with MS.

Of course, the image surrounding MS doesn’t help. When people – including medical professionals – recoil when you explain your diagnosis (MS being up there with the scariest of the scariest illnesses), it can be all too easy to slip into the role of wearing MS as a badge of suffering and an excuse for not partaking in ordinary life any more. Of course, of course, life has changed beyond all recognition. But. I have met people who have taken this mantle very early on and displayed it for all to see, to the detriment of everything else. In short, it becomes their raison d’etre: I can’t do it, I have MS.

I have experienced the flip-side to this myself, many times – I can be praised for how marvellous I am to take a Masters, considering. Or continue to work, considering. However, I also know that my job-seeking days are almost behind me. I can breeze through the first interview then come to a halt at the second. You have to come clean. CV in the bin. Yes, that’s my MS excuse, but I sought other avenues and bugged friends until one of them, my long-suffering, now-ex-best-friend took a chance on me.

When MS obliterates your life and smashes it to smithereens, nod politely at the people who look at you with doleful eyes, thanking the heavens it’s not them. Do something extraordinary. If people expect nothing from you, surprise them. You have a blank page, ready to write on it anything you want.

If you decide to take up that long-forgotten hobby, do it. If you want to launch your own micro-business from your kitchen table, start a bee-keeping course, learn to make candles, do it. Not only will  you achieve something new, people will congratulate you. A win-win situation, and liberating?

For the record, I know a good few MS publications are full of people doing stuff waaaay beyond the ordinary. I will not, for the record, take up skydiving. The nearest I got was Nevada where I clung to the pilot as my friend threw himself out of a plane (which had no doors). And I won’t be trekking around Nepal any time soon. With my legs?

What I mean is, MS is a wonderful excuse, and it cuts both ways. It is an excuse to duck out of life and host an endless pity-party with like-minded individuals, OR it can be a gateway to an amazing new way to live.

Get me. Last time I saw my tutor for a portfolio one-to-one, we were talking about the possibility of progressing to a PhD. Lol. I mean, really? I have MS, don’tcha know?

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Dec 05 2014
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Daily Life

Careful, Or You’ll End Up In My Novel…

starving artistThe life of a fledging, blossoming ‘writer’ – dramatic yet slightly pensive sigh – is not an easy one.

By day I don protective clothing and slide around in mud (sounds odd until you remember I work as a project manager for a builder, plus it rains a lot in Wales).

However come nightfall, I transmogrify into a wandering scribbler, jotting down the Remarkable  and not-so-Remarkable Things I Experienced Today.

Now I’m taking a course in Creative Writing, I’m learning to see the remarkable in the unremarkable and the unremarkable in the remarkable. I think. Confused? Me too.

In short, some kind of inspiration. So much so that I’ve become totes pretentious and have started to carry a battered notebook with me at all times. Unless I forget (easily done) in which case I send a text to myself, full or random ramblings.

Anyway, I digress. Essentially I lead quite a boring life, unless you count the mud, so I don’t really get to do exciting writeable things. Yet I have found that inspiration, words, phrases and a bit of other things strike when I least expect it. Seems however, my work-mates expect it.

Like today, we are currently working up a mountain and were sitting outside rushing to finish our coffee before the wind whipped it into a frappe. It was freezing but the clouds were stunningly beautiful. I pointed this out to my colleague, mesmerised and staring at the sky with misty eyes. He checked his phone, made his excuses and swiftly went back to banging bits of wood, muttering. Then the slabs of insulation danced and skittered in the wind, as if by an invisible hand (quickly scribble note).

‘There’s a story in that’ is my most commonly-used phrase at work, followed by ‘Shut up, boss, s’not funny. I tripped’.

However, in the last few weeks, I have upped the ante. After a particularly exhausting day keeping the boss in check, I told him in low Bond-villainnesque tones that I would put him in my novel, provisionally entitled, ”Two Bacon Butties To Go, Ta, And Go Easy on the Ketchup’.

Much to my dismay, he seemed delighted and played up to his role. So now I have to put up with even more Christmas songs on a loop courtesy of the evil elves at Smooth Radio and he has cut my caramel shortbread ration. Today we had fairy cakes. No comparison, even if they did come with plastic Santa Claus rings on top (which I collect and push into the air vents in the car).

So, no, the life of a struggling author/writer isn’t easy.

But! This challenge will surely be the making of me?

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Dec 02 2014
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Daily Life

Concealing The Unavoidable

StumblingI was ‘Getting The Teenager Ready For School’ the other day.

No mean feat.

Blazer? Grunt. Tie? Grunt. Lunch money? S’not enough, my mates get, like a tenner. AND they’re allowed to buy donuts.

Anyway, in the middle of this, just as I was adjusting the straps on his empty school bag yet again, I tripped over a rug, one of many in my house.

The Teenager looked horrified. I righted myself and attempted a casual laugh. ‘Oh, d’uh, pesky rug, who put that there?’.

‘Why do you always do that? Why can’t you be normal, like other parents? I hate it.’

I tried to reassure him that I hadn’t yet had my requisite three cups of coffee and was simply tired. And yes, part of MS is stumbling and tripping.

‘Yeah, and your point is? You’re always tired. You always stumble’.

‘Am not’.

‘Are so’.

‘Am not’.

I realised that perhaps this line of reasoning wasn’t particularly mature, so I bustled around him and waved him off with a cheery, ‘have a great day at school!’, while he made shoo-ing gestures to urge me back indoors, lest any of his friends see me.

The Teenager has coped admirably since MS came into his life when he was 11 and in the middle of transitioning to high school. Not the best time for it, but MS could never be deemed a polite intruder. He’s witnessed too much, no matter how hard I try to conceal things from him. At his age, kids just want everything to be normal. They don’t want their parents to be different.

Some may ask what on earth I’m doing; why not let him see MS in all it’s glory? It’ll make him a better person. More compassionate, more caring. Fair point, but not for us. As a divorced single parent, I am his mainstay and he deserves a childhood.

I hide a lot from him, as do many other parents with issues, be it lack of money, anxiety, job insecurities, relationship stress. We want the best for our children and as such I drip-feed information to him as and when I think it is necessary. I don’t keep him in the dark, but I am selective.

He really doesn’t need to know all the ins and outs, especially my fears and worries. Why would he? Why put that extra burden on him, especially at his age when he is going through vital exams? My son is not my confidant, he is my child. And if the utmost aim of parents is to protect our children, then I will do that as long as I possibly can.

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