Monthly Archives: June 2015

Guilty? Oh, Yes.

guiltAfter a truly horrendous couple of years with MS and then the wonder of Alemtuzumab treatment, I am at a curious place.

I’m over the moon that my MS has stabilised; the enduring symptoms remain but are manageable, mostly.

Relapses are now few and far between – horrifying when they happen, catapulting me back to the bad old days, but they pass.

Before I went to Austria on holiday, my mum was worrying herself silly that I wouldn’t be able to cope with MS and all its symptoms so far from home. Luckily, with a bit of forward-planning and plenty of adjustments, I pulled it off.

I was having a chat with her today, and I remembered saying to my neurologist in January that always, always, at the dark place in my mind was my dad’s MS and could, would, the same thing happen to me at some point?

Of course, I know it probably won’t, but the mind is a strange thing. I feel incredibly guilty that my MS has been made a whole lot easier than my dad’s ever was. And not only that, also that I’m faring better than a lot of people who have MS today.

I’ve tried to re-form this thought. Ok, my MS is under control. So, what can I do with this reprieve? Should I do everything I possibly can, everything I ever wanted to do? How long is the window of opportunity? MS has shaken me down, given me a resounding slap across the face and pushed me into places I’ve never been before.

Me? Public speaking? Well, yes, even with my weird Scottish-Americano accent – I’ve talked at MS newly-diagnosed days, to executives of Genzyme (the manufacturers of Alemtuzumab) and forever on film for World MS Day, chubby face and all.

Me? Take a Master’s? Yup. I even passed the first year and am looking forward to the second.  And mulling over my tutor’s suggestion about taking a PhD *faint*.

Me? Take on unscrupulous employers and win? Yes, and then some.

My biggest fear hasn’t been realised – I’m still here to cater for The Teenager’s every whim. We’ve got through the exams, the future plans and the prom (a very, very long and traumatic story – not me, him).

I’m still here, I’m doing ok, but I can’t shake the guilt.

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Wunderbar

AustriaWell, we made it back to Blighty by the skin of our teeth, not realising we were on one of the last Euro Shuttles out of Calais before a strike shut the entire town.

Just as well, as the kitten was due to be retrieved from the cattery by 4pm and The Teenager needed picking up from his flight to London in the wee early hours of Thursday.

Anyway, the trip to Austria with my boss/friend exceeded all expectations and amazingly, my tattered remnants of German held up – I was able to confidently order beers, ask how much a sausage with curry sauce was and change money for the endless loo breaks (they charge in European motorway stop offs, but well worth it just to watch the loo seat swivel round after flushing).

I tagged along, feigning interest in the Austrian Grand Prix, whilst secretly swotting up beforehand – what’s a few fast cars between friends? The boss magnanimously declined to attend the qualifiers, so we drove through Slovenia to Croatia on the Saturday instead, ending up in Zagreb for coffee and a wander round the old town.

Back in Austria, I initiated him into the joys of Wiener Schnintzel, small pale beers, bread with ham and cheese for breakfast and watching the F1 highlights in German, with me translating.

In retrospect, I learned a lot from our six-day trip:

  • A car is a very small space. As such, my friend didn’t always appreciate my attempts to stick ‘Blob’ gummy sweets (sold at every good German petrol station) to the dashboard when he was nudging 110 miles an hour.
  • A Grand Prix is kind of exciting. I bugged my friend with a lot of questions. He missed the crash at the beginning and started to reply through gritted teeth. I found the easiest way to calm him down was to pop another sausage and coffee in front of him.
  • The Grand Prix merchandise is waaaaaaay overpriced. I scraped together the money for a tiny teddy-bear keyring and got my friend to swipe the flags from the seats in front of us – you know, the ones that were to be waved by the spectators to show the Austrian flag to the watching world? Yup, those missing gaps are my fault.
  • I am much more confident with driving, helped no doubt by very fast cars behind me flashing their lights.
  • Most importantly, I have expanded my horizons a little bit and discovered that life does indeed go on outside my own four walls.

Back home, I had a pit-stop then schlepped to London to get The Teenager. He had travelled as an unaccompanied minor and as such, was mortified to be led through customs by a flight attendant. There was a moment’s hesitation when I was asked to sign for him (lol), but The Teenager and his passport were handed over.

A perfect week was rounded off by finding out that my book has been short-listed for The International Rubery Book Award 2015. Wunderbar x 10.

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Austria, Here We Come

AustriaMy boss. He doesn’t do the usual Dress Down Fridays (bit difficult as we wear paint-splattered gear every day – maybe we should have Dress Up Fridays?) or debauched Christmas parties, the meanie.

Last year, he held a festive bash for one. Him. On his own in a luxury restaurant with a 10-course tasting menu, a wonky paper hat, a bottle of bubbly and one straw.

This year however, he’s decided to splash out on a company outing. It started something like this:

‘Oi, Half-Shift! You speak German, don’t you? Didn’t you used to live in Austria? Can you ask for a hot-dog in the lingo?’

‘Erm, yup? Ja? Boss. Jawohl? Wurst?’

‘Excellent. We’re going to Austria.’

‘Oh. wunderbar! Are we going to tour the majestic beauty of the mountains and the breath-taking winding roads? Perhaps stopping in a charming Gasthof with carved wooden balconies? Wiener Schnitzel every evening?’

‘Nah, nothing like that. Grand Prix. In Graz.’

‘Oh.’

‘You in?’

Well. What could I say? It just so happens The Teenager is with his dad at the same time. Blimey. A road trip from Cardiff to Graz. To watch some souped-up cars racing round in a loop, over and over again. What’s not to like?

Of course I’m in. I might not understand what it’s all about – apparently he’s booked Grandstand seats – but I’m sure I can take my Inspirational Thoughts notebook and jot down some literary musings, sipping a strong coffee.

Actually, I can’t wait. My own four walls are closing in on me and the chance of escape is enticing.

We leave tomorrow morning and I’m still not packed. Being pale, fat and frumpy, my wardrobe choices are somewhat limited. I have a couple of pairs of cropped trousers but when I tried them on, my white legs blinded me and should Lewis Hamilton need one, I have a spare tyre or two around my waist.

Gut, ja?

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Who’s The Minority?

disabledDo you consider yourself to be disabled?

Well, if you have MS, you are disabled, according to The Government.

I’m not sure how I feel about this term.

What is disabled anyway? Unable to do what others can? Are we disabled by our own limitations or by society and our environment?

On the flip-side,what does healthy mean? Do you know a healthy person? I’m not sure I do and interestingly, a new study by the University of Washington throws up some truly gobsmacking results.

An analysis of 188 countries revealed that just 4.3% of the population have no health problems. 4.3%. Further, a third of the world’s population – 2.3 billion people – has at least five ailments.

Who’s disabled now?

If 95.7% of the population have at least one ‘disability’, even with my maths, it pretty much means we’re all in the same boat. We are a ‘disabled’ society.

In a way, I feel comfortable having a set-in-stone diagnosis. My random symptoms have been gathered under one umbrella, MS. There is legislation in place to ‘protect’ my rights. All well and good until an employer chooses to ignore them and bully you out of your workplace. I speak from experience.

Funnily enough, one of the people who took great pleasure in sacking me for my MS actually took many, many more sick days than I ever did (and unlike me, she had paid sick leave). So who’s the disabled one? She was off work so often, it was a surprise to see her in the office.

Why are those of us with a Confirmed Diagnosis of Something or Other lumped together into a group, best dealt with by suspicion, fear and enmity? Even though I worked just as hard/harder than anyone else, I became someone to be viewed with distrust.

If unhealthy (gah, what a term) people are the majority, where have we gone wrong as a society?

Years ago, I used to work in a tremendously busy office. So-and-so had a special cushion for her chair as she had backache. Another person had migraines and had to take frequent screen-breaks. Someone else had diabetes. A typical office then.

Perhaps it is time to recognise that as a society, we all deal with some pain or ailment on a daily basis and it is our duty to protect and nurture each other. We’re only human after all.

And the irony?

The job I was unceremoniously sacked from was within a care company, specialising in helping ‘disabled’ people to retain their independence.

You couldn’t make it up …

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So MS Isn’t Painful?

MS painThere’s a misconception that MS is somehow pain-free and more of an irritant than anything else.

You know, the stumbling, the dodgy memory, the heat intolerance, the fatigue. In the grand scheme of things, not a bad little illness to have, right?

Wrong.

Sure, we can ‘laugh’ at the stumbling walk, until we trip down the stairs or fall over the in the shower, still clutching our Herbal Essence. We can put up with the joshing about our forgetfulness and fondness for post-it notes. As for the fatigue, well that’s just downright cushy of course. But pain?

Well, over the last month or so I’ve been in a lot of pain. First up was the heat intolerance. People will tell you it’s perfectly simple – just stay out of the sun, pop a hat on and drink lots of water. Why didn’t I think of that? If it were that easy, I would stay in a shady corner until the Christmas goods start appearing in the supermarkets.

So, the heat made me wilt. It pulled the plug on my energy, which was bad enough, but it then began to bring up intense itching, which to my horror, turned into a grotesque rash of blisters. To cut a long story short, after steroids and jumbo-sized bottles of grotty cream, it’s under control but I’m now left with ugly scarring all over my arms. And they still itch at the merest hint of sun, even through clothing. The boss has moved on from nicknaming me Half Shift to Apocalypse Zombie.

So far so bad but worse was to come. I’ve always had neuropathic pain in my legs, feet and arms and my dose of Pregabilin has been steadily increased to cope with it but over the last two weeks it morphed into something truly evil.

Take yesterday. I had a good day at work, got home, sorted The Teenager out (he’s on exam study leave, aka, doss around in bed all day eating toast), and put out the rubbish. Then blam, a whoosh of extreme nerve pain. I lay on the sofa whimpering and it rendered me useless. I tried to lie still, but the pain kept coming in hideous waves, along with intermittent violent twitching in my legs.

Sleep seemed the only answer so I set my alarm and tried to doze off. Only to be awoken by The Teenager crashing downstairs looking for the vacuum cleaner (he’s quite unfamiliar with it). Of course, after being holed up in his room all day, he wants to clean it at 8pm. He bashed every skirting board with the vacuum, sang (badly) at the top of his voice and chatted shouted to his friends on the X-Box before rushing back downstairs to make some toast.

So the next person who tells me I’ve got off lightly with MS, please excuse me while I trip you up and poke you with a cattle prod.

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