Arthouse Bingo

bingo timeThe Teenager was away at the weekend, so I went to an arty cafe/winebar/arts space to pretend to be cultivated, arty and interesting. Hopefully my pale, MS-tired face added to the mystique.

To pass the time and look as if I am writing an angsty novel, I play ‘Arthouse Bingo’. The rules are easy – a point if you can spot each of the following, and if you get to 5, buy yourself another drink:

  • Massively over-sized lampshades, preferably in black.
  • No menus, just a huge blackboard with locally-sourced food, i.e. they went to the local Lidl, bought some salami and Parma ham and slapped it on a slate tile with a couple of sliced gherkins.
  • A higher than average array of beardy men (and some women). Likewise, a higher than average amount of red trousers worn.
  • A minimum of 30 European beers with ‘ironic’ names – the easy way to get intellectually inebriated.
  • Lots of conversations starting with, ‘But is it art?’
  • A tribe of wild-looking children running amok as the parents look on indulgently, ‘Juniper, Hugo and Mabel, darlings, untie Milly and come and eat your asparagus soldiers.’
  • A book-swap corner – a bookcase where you can bring your old tat and swap it for a 1992 Driving Atlas of France.
  • Coffee must be handpicked by an organic wizard in deepest Columbia.
  • Lots of women with flowing hair, strings of hand-made beads and jangly silver bracelets.
  • Old Skool puddings on the menu – spotted dick, apple crumble, custard, etc. Such fun!
  • At least 5 terribly anguished-looking people hunched over MacBooks.
  • If there is a cinema, listen out for, ‘Oh, but I preferred the book, the original Dutch translation.’
  • Everyone speaks very LOUD. No need for music unless there is a visiting harmonica group from Patagonia.

Anyway, I passed a lovely couple of hours, braying loudly, speculating as to whether the huge painting in the bar was art or not. I rattled my beads intelligently and enjoyed my ironic glass of dry white wine. I have past form in these places – as a teenager, I considered myself to be the coolest person ever, standing by the bar, beret on, reading Jean-Paul Sartre and talking utter nonsense.

If I had the nerve (and legs), I would love to turn up in a denim mini-skirt and white stilettos. Only two flaws with that plan – one, I can’t walk in heels and two, the crowd would probably think I was the performance art…….

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Happy Now?

I’ve had a tough couple of days. My old nemesis MS fatigue has dropped in for a visit and shows no signs of taking the hint and shoving off, the scoundrel. But in my new, positive spirit, I’m just trucking along, trying to make the best of it.

To cheer me up, I read an article I cut out of  January’s Glamour magazine – 100 Things To Make You Happy and here’s some of what I have taken on board:

  • Become a regular somewhere – I am now a regular at several cafes due to my (at times alarming) Americano addiction, and it’s nice to have a chat and pass the time of day.
  • Get a cute fix – I regularly google ‘animals doing funny things’ and ‘cute baby animals’. I also google ‘ugly babies’. I know, I know, that’s terrible. But try it – I dare you not to smile.
  • Watch ‘The 19.57 From Euston’ on YouTube – a man hires a singing group to perform on the London underground while he proposes to his girlfriend – soooo sweet.
  • Put clean sheets on the bed – possibly one of my most favourite thing to do. Finish off with a squirt of perfume or Febreze if you’re a cheapskate.
  • Buy a smart new notebook – I just bought two and am cultivating an intelligent air in cafes (see above), scribbling down my bon mots and musings. Pretentious, moi?
  • Write down, in new notebook, three things that made you happy each day- it really works.
  • Use a zingy shower gel to get you going in the morning – this works too, but I have to remember not to grab The Teenager’s Lynx by mistake. Not nice.
  • Try a new thing every day – a different newspaper, a new route somewhere, anything. This is great fun and really perks up your mind. Mind you, my builder friend has bought me a chicken curry pie for my lunch. I’ve never tried one before and I’m not sure I want to….

Am I happy now? You betcha.  The article ends on these facts for all us worriers out there:

  • 39% of things you worry about will never happen
  • 32% of things you worry about have already happened
  • 9% (ONLY 9%!!) of worries actually relate to important issues.

So, I’m off to the cafe, notebook and pen in hand. Perhaps I’ll try a different coffee, shake things up a little. The excitement! And it might, just might  keep me awake a bit longer…

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Love Your MS Nurse? Tell The World…

The ‘My Super Nurse’ campaign for 2013 will be starting very soon, leading up to MS Awareness Week in the Spring, and the MS Trust really want to hear from you. The campaign goes live on 7th February, when you can nominate your nurse online.

But you don’t have to wait til then – the MS Trust would like you to write something about how fabulous your MS nurse is or, if you’re camera-happy, record yourself talking about them! It’ll only take a few minutes – just use your digital camera, your phone or your laptop, say something nice and send it to them. Click here – ‘My Super Nurse‘  for more details.

I spoke to a lovely guy at the Trust yesterday, raving on (intelligently, I think/hope) about how much MS nurses mean to me, so if you feel the same way, join in. You may be aware that some MS nurse posts could be under threat, so let’s all gather together and prove to the powers that be just how much they help us out.

I am lucky. I live in a city and have a whole team of MS nurses at my local hospital. Even though I have my own dedicated nurse, I know all the MS nurses and they are quite simply amazing. They remember every detail, every symptom. They care. Passionately.

My journey through the whole system, from first bizarre symptom to diagnosis to treatment has been made so much easier with their support and guidance. I hate the idea of calling nurses ‘angels’, but in this instance I can make an exception. I’m not quite sure where I would be without their calm, caring manner. I have called them in tears, I have left garbled messages on their answer phones and rung them with the weirdest symptoms. They have always been there for me.

So, let’s give something back? Take five minutes, write or record something and send it in. Spread the word, tell your friends too. We need our MS nurses. They are our lifeline.

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Muddy Hell…

The Teenager had a rugby match on Sunday. After the snow thawed, the torrential rain came so we were convinced the match would be cancelled. A pitch inspection was due the day before and after the groundsman had waded through inches of mud, he declared the pitch good to play. Of course.

The Teenager had a lift with the trainer and off he went with his Lucozade and boot bag. Three hours later he was returned, a huge blob of mud standing on the doorstep.  The only un-muddy bit of him was a grubby bandage wound tightly round his wrist, which he held out sadly with a pained expression.

He’d only played for ten minutes (so who knows how much more mud he could have gathered if he’d played full time), as someone had trod on his wrist during a try and he was out for the rest of the game. Anyway, he stripped, I picked up the sodden clothes and chucked them in the machine as he squelched his way to the shower. Within ten minutes, there was a yell:

‘Muuuuuuuuuuuum!’

‘What?’

‘I’m in aaaaagony. But we won, 43-0.’

‘Glad you won! Ok, I’ll bandage it up, don’t worry. Then you can go and do some homework.’

‘Too sore. I’m dying’.

‘Ok, just do it quietly’.

Believe me, I was sympathetic, but this continued in a loop all day. He’d appear in front of me, a wan-faced vision. He’d lie on the sofa, asking for help to pick up the remote, but oddly not needing the same help to play on his iphone.  I made him a hot chocolate with a dollop of Fluff on top and helped him pack his bag.

Monday. I bandaged, unbandaged and bandaged his wrist so many times I lost count. It got in the way of his x-box controller. I got a bigger bandage (ha!) and wrapped that round his wrist instead. I’m not a horrible mum, honestly, but my nerves were stretched.

One sulky Teenager plus one (slight) injury has made for a very unhappy household these last few days. To top it all, after helping him with his school jumper yesterday morning and packing his school bag once more, I offered to bandage his wrist again. ‘Nah, don’t worry, it felt better on Monday, I just enjoyed wearing it, everyone was asking me about it at school……’

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Eye Don’t Believe It…

The dodgy eye saga continues. Yesterday I went to the eye specialist at the hospital after being referred by the neurologist. So far so good. I settled down with a newspaper and waited. And waited. And waited. No mobile phone reception either, grrr.

Then a nurse called me in and squirted my eyes with stinging liquid to dilate my pupils. I joked that a glass of wine would have done the trick just as well, but the sun wasn’t yet over the yardarm. She popped me back to the waiting room with the warning that my vision would be blurry for up to six hours.

After the receptionist had left for lunch, I was still waiting. I picked up my book but couldn’t read it, so played solitaire on the phone for the next hour, squinting at the screen through one eye. Finally, I was called in and my eyes were  squirted again and I was weeping yellow tears. Ewww.

Lots of eyeball to eyeball contact with the doctor, then he went off to consult with someone else. By this time, I’m quite worried. I had seen that he’d drawn two eyeballs on his notes with lots of squiggly lines on one of them. When he came back, he told me the good news was that I didn’t have optic neuritis. Phew. But. Oh, a ‘but’.

He had detected that the retina in one eye had a weakness. He wants to see me again in two weeks and if the weakness is still there, he’ll recommend laser eye surgery. Visions of that scene in ‘Clockwork Orange’ sprang to mind. I clutched my appointment forms and left, telling my mum the news. ‘Oh, they’ll clamp your eye open and inject it before zapping you’, she said. Thanks mum.

Anyway, in my new spirit of positive thinking, I am so, so relieved it’s not optic neuritis or even MS-related and incredibly grateful they’ve picked up on a potential future problem which can be fixed sooner rather than later. How lucky am I? Plus, I’ve just found a whole bag of Bombay Mix in the cupboard. Simple things, eh?

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