Monthly Archives: May 2014

What Have I Done?

scooby snackWell, my MS-versary passed without major incident. I ended a very pleasant evening out still talking fairly intelligently to my friends rather than random trees or street signs (it has been known).

Life was looking good. I was in a good place, feeling, um, good.

Until an email pinged on my phone. A weighty document from the university, detailing a reading list, term dates, rules, regulations, how to get a student ID card (yay!) and plagiarism warnings.

Oops.

Have I been a bit too hasty in signing up for an MA? Will my brain have the last laugh? I scanned the book list, the phrases ‘developing effective analysis and argument’, ‘critical thinking skills’, ‘Harvard referencing’ leaping out at me. Assignments include a 6,000 word novel chapter, a 3,000 short story and a 10,000 word dissertation.

Perhaps my expectations have been a little on the low-expectation side. I imagined Creative Writing to be, well, creative and artistic. I had a vision of myself scribbling important thoughts in a battered notebook with a lilac pen. I would be sitting in a dingy cafe wearing fingerless gloves and studenty clothes. Me and The Teenager would cook beans on toast and lentil curry on alternate nights, warmed by the glow of our last candle. Perhaps we would visit the market at the end of the day to pick up plums and turnips that had fallen on the floor.

The last time I critically analysed anything, it was a letter from my neurologist detailing the sorry state of my brain, and even then I had to Google the long words. This course would be a whole different brain-game. Am I really up to it?

In a bid to calm down, I listened to my ‘You Are Intelligent and You Can Do It!’ relaxation thingie. Unfortunately this left me more stressed as I couldn’t count down my Stairway To Success without losing track of where I was. And when the American voice told me I was a worthy and special being, all I heard was ‘you are a special bean’. I snorted with laughter and missed the next bit about creating compartments in my mind where I could store important information. Gah.

In a fit of optimism,  I ordered everything from my reading list and I have a pot of freshly-sharpened pencils on my desk. Am I ready for September? About as ready as I was for my lumbar puncture….

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Happy MS-Versary To Me…

happy MS-versaryOn Sunday, it will be two years to the day that I was diagnosed with MS.

Two teeny-weeny years, but it feels like a lifetime ago. Unlike my six-month anniversary (totes pretentious sad, no?), this will be a time of positive and uplifting reflection.

I am throwing off the black mourning clothes, although I do look rather fetching and dramatic in black.

Maybe I’ll just keep the black eye-liner. And beret. Anyway, so here I am. Here is my list of things I feel truly grateful for:

  • I have moved into the acceptance phase. At Long Last. I’ve gone from being scared beyond belief, waking in the wee small hours, to being well-informed, if still a little bit scared.
  • My relationship with The Teenager is stronger than ever. He went to London one weekend three years ago and came back to a parent who was in hospital unable to speak or walk properly. He was only 11. We’ve had tears, heart-rending conversations and hugs. Just yesterday he asked me if I was going to die of MS. I was driving at the time, bit awkward, but we chatted about it and I reassured him I would be around long enough to show his great-grandchildren that photo of him sitting naked in a jumbo-sized plant pot when he was two.
  • I have a brilliant support network. From our MS team here in Cardiff who are amazing to all you guys I’ve met through blogging and Twitter. When I stopped blogging a while back, it was as if I’d been unplugged from a power source. I can’t tell you how much I missed you all. You keep me sane(ish).
  • I have a fabulous job with my best friend. Ok, so he might snigger when I trip over yet again, or forget what I was saying halfway through a conversation, but he’s been great. He employed me as soon as I was sacked from my last job, even though he hates paperwork with a passion.
  • I finally finished my second degree (after much, much wailing and angst) and have signed up for an MA. Never would have happened without MS. It really does make you grasp life with both hands – no pun intended.
  • This is an odd one – I don’t really remember my dad as he died when I was very young, but I feel somehow closer to him, more understanding of what he must have gone through, as he had MS too.

This Sunday, as much as I would like to host a tea party or climb some random mountain just to mark the day, I will be in work. Yup. Some things never change *waves to boss*

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You Are Now Entering The MS Bubble….

bubbleHmmm. It’s been pointed out to me that perhaps I live in an MS bubble – I think MS, breathe MS, speak MS.

Nothing could be further from the truth.

Fair enough, perhaps I am trapped in some kind of bubble, but through no choice of my own.

I have always said, if I had a partner, he would be my ‘blog’. I could offload, work through feelings, come to resolutions. I don’t have that. Therefore, I blog.

Sadly for you guys, you are the devils on my shoulder. And what a brilliant collective of devils!

So how far has my MS bubble extended?

  • First, I must address the point made by some friends – they know people who don’t ‘bang on’ about having MS. Hmm. I write a blog about MS. (come to my house and we’ll chat about anything and everything but not MS – for more than five minutes). Furthermore:
  • My blog is not the whole story. Believe me, you would run for the hills if you heard the whole sorry saga.
  • I have a life outside my blog. Yup!
  • I lost my job thanks to MS and ignorant employers – MS (but I won the tribunal – result!).
  • I nearly flunked Uni – MS.
  • I passed degree and enrolled on an MA – MS.
  • My career path has radically altered – MS.
  • My (sadly neglected) dating history has ground to a halt – MS.

So, yes, MS has had an impact on virtually every area of my life. Even down to reading a book. Anything more than 300 pages and it’s Kindle, not a paperback. Numb hands are not much fun. Ditto shampoo bottles. And squeezy ketchup.

I was told (by a fellow MSer) that I ‘may as well go out with him’ as he was ‘the best I could hope for now I have MS.’ Well, no.

My world has perhaps been shaped and altered by MS, but it in no way defines who I am. I was always go-getting. I was always adventurous. I have always brought up The Teenager to believe that life was out there, ready to be discovered.

Which is all the more surprising as The Teenager is somewhere on the autistic spectrum. I was fortunate. I met a leading expert years ago – he told me ‘push him out there. make him believe he can do it. You can’t change his world, but you can help him adapt to it’.

And, you know what? It took me three years to get him to catch a ball and the same time to teach him to swim.

So, no, MS is definitely not the most important thing in my life. The Teenager is.

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Annual Report, Lol

TeenagerI was handed an opened A4 envelope today by The Teenager, with the words:

‘s’ok you know, s’not me, s’my teachers, honest, I mean, reallllllly, you know, innit, obvs.’

Yes. School Report Time.

First, the good news -he has a 96% attendance record with 0% unauthorised.

As for the rest:

  • ‘…he has the potential to be an amazing student…but he procrastinates……’
  • ‘….he is a popular member of the class but can become distracted’
  • ‘…he is a bright pupil but easily distracted….’
  • ‘…..you can do it!’

And so on. So we had The Talk. Of course, his teachers lie. Dreadfully. Tut. Never in my day.

I was, and I freely admit it, a girly swot. I was over the moon when I found out he would have the same German teacher as me. At parents evening a couple of years ago, we had a huge hug (I hadn’t seen her since I left for Austria at the age of 18), then she sweetly told me The Teenager would never be reading Brecht in the original. But no matter, he had other talents.

And he does. Many. What’s difficult is juggling this hormone-tastic time with general life. Take for example a couple of days ago:

Me: Hey, that was a nice dinner, no?

Him: Yeah. But I hate MS.

Me: Oh. Um. Yeah. Was it the carrots?

Him: Hate carrots. Hate MS.

Me: And how does that make you feel? (what else should I have said??)

Him: Sad.

The next day we had breakfast together in a cafe. I tentatively raised the subject again – MS, not the carrots. We chatted. We mulled over how both our lives had changed. We shared a baby-ccino.

MS is horrible. The Teenager has needed to formulate what has happened to me into words he can understand and pass on and make acceptable for his peer-group, i.e. ‘oh, yeah, my mum has MS, just like Jack Osbourne. I know!!!! Wicked (or dench, lush, etc)’

The biggest accolade happened the other day: ‘I told (friend) all about you and the MS, and he likes you and I like you and he’s staying over on Tuesday, so can we have  pizza?’

Annual Report. The Teenager – Must Try Harder

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Flip Flop Flap

vampireVampire season is upon us once more.

We have a mini-heatwave. I have been following the weather forecasts avidly, inwardly rejoicing when I heard there will be showers next week (I live in Wales; by law it must rain at least every few days).

I’m not a kill-joy. I am sooo happy to see people trundling up to Asda’s and back again, cars stocked full of barbecue supplies.

I like to see everyone decked out in summer prints and of course, it’s always a delight to see a whole bunch of men ill-advisedly walking around topless. Eww.

I’ve been invited to a family do tomorrow. They’re well used to me by now – my mum called and said, ‘don’t worry dear, we’ll put you in that dark corner with the parasol over you’. I’ll just shout across the garden when I need more ice cubes to chuck down my t-shirt and let the kids run around squirting me with their water pistols.

I must sound really grumbly. I love the sun, I really do. At a distance. Through the window. Sadly, The Teenager has whipped my large floor fan upstairs as apparently he can’t study without it. Although he seems to study perfectly well at the same time as chatting to his friends on Skype in his impenetrable, grunty language. He’s also recently ‘discovered’ Duran Duran and my house now sounds like an Old Skool Disco.

Anyway, I’m not complaining. Even though I don’t wear flip flops any more – foot drop is a nightmare with them on and it’s not inconceivable that I could catch the front of them, flinging myself forward, face-down on to the nearest available pavement. I have bought some floaty tops and sunglasses. I will hopefully be rocking the chic Continental look; slightly bored and above these childish solar delights.

The good news is, there is the consolation that with MS heat intolerance, it is imperative to self-prescribe ice cream. Emergency Medication. Plus there is the added bonus of having a blast of lovely icy air whenever I open the freezer to admire my range of Ben & Jerry’s.

So this weekend, I will be lurking in dark corners, vampire-esquely. Except I won’t have a lovely pale vampire face. I’ll be the one shining like a bright red beacon, gripping a tub of Phish Food….

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