Monthly Archives: September 2012

Sep 30 2012
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Daily Life

I kid you not

MS has made me more adventurous and given me a desire to ‘try new things’. I’m not sure why, perhaps a case of, what have I got to lose? I have an ongoing list of new things to try, more often added to than attempted. Yesterday, I set out to change this. Every weekend I buy a small child’s height of newspapers and every weekend I read the recipe pages, scanning through the ingredients, the cooking methods, the time taken, think, ‘hmm, that sounds nice’ and quickly turn the page, berating myself for not exposing The Teenager to more exotic food. But yesterday, I promised myself that I would try out the first recipe I came across. Perhaps I should have read The Mail on Saturday first (Jamie’s 15 minute meals – desserts this week, darn it), but I picked up The Guardian as I always turn to the ‘Blind Date’ article – living vicariously.

The divine Hugh Fearnley-Whittingstall is leaning casually against his Aga, pots hanging from a driftwood rack behind him. He asks, ‘why don’t we eat more goat?’ Oh. Um, because the local Co-op doesn’t stock it? But in the spirit of adventure, I read on. Perhaps Waitrose have it. Or that obscure butcher I always mean to visit (another tick on ‘try new things’ list!). First ingredient is hay. This is not going well. Helpfully though, Hugh suggests that if I don’t know a farmer, I can always buy small packs of it from a pet shop. Ok, quick visit to Pets At Home too, then.

So, assuming I have my goat and my hay, the next thing I have to do is to soak the hay in a bucket, then drain. I don’t have a bucket, long story. Quick trip to the hardware store too then, Hugh? Nope. Take the goat, the hay and the bucket off my shopping list, scribble down chops, potatoes and veg. Maybe try again next week, but for now, reading the recipe was adventurous enough for me.

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Sep 28 2012
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Symptoms and Treatment

Firewalking. Seriously?

imagesCAARAXK5I had an email yesterday, an update about ways to get involved in raising money for charity. Fundraising is admirable, worthy, makes you feel good inside and funding multiple sclerosis societies and their research is vital.

So when they knocked around a few ideas of how to raise this money, WHO came up with the idea of firewalking?

If one of the most common and distressing symptoms of MS is heat intolerance, it seems a bit of a strange and slightly cruel choice. How about upping the ante and have people fire-eating and firewalking simultaneously?

A lot of regional societies organise these events and apparently you walk 20 feet across burning embers, with the coals reaching 1200 degrees fahrenheit ( a crematorium burns at around 1400 degrees). In the information section, the guidelines state you must be able to lift your feet and take a minimum of 8 steps at fast pace. Hmm. Beginning to sound like a Disability Living Allowance assessment – at least we’re on familiar territory. In addition, ‘you may use walking sticks or mobility aids but please be aware that these may suffer fire damage’. Hey, that sounds great fun, where do I sign up?

Instead, how about choosing something us MS’ers are good at? A sofa-thon? Who can stay on their sofa the longest (me, me!). Or MS Snap? Give people some cards, get them to write down all their symptoms, shuffle them around and play a couple of games. For the uninitiated, MS has a vast amount of symptoms, so these games could run and run. Sometimes the old ways are the best though, so if you see a sad figure forlornly rattling a collection tin, pop some money in. It could be me,..

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Sep 28 2012
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My Ramblings

Friday…at last

I only work a couple of days a week, having dropped some hours (thanks, MS!) but I still get out-of-proportion excited whenever Friday rolls around. Only one problem with that. My expectations way exceed reality.

I sit there in work, idly scrolling through events listings, checking out the live music pages, the theatre, the cinema, new restaurant openings and all the rest of it. In my mind, I am dressed up like a goddess on steroids and even have some fabulously high heels on. My hair is swishy, my make-up is flawless and I have a zinging, Friday-night energy. I can picture myself surrounded by glossy, admiring friends, casually toasting each other in some brand-new bar, attracting envious yet welcoming stares from handsome men. I will be on top form, wowing my friends with fabulous stories gleaned over my busy week and perhaps impressing them by throwing a delicately-spiced wasabi nut in the air and catching it in my mouth.

Or I will be hanging out at the more alternative arts place, with my black polo neck and smart, slightly-distressd jeans on, accessorised with chunky, hand-made beads from a women’s collective in The Gambia. With my beret at a jaunty angle, I will toss out witty remarks, only pausing to applaud the experimental jazz band playing in the corner. We will drink Belgian-brewed gooseberry cider and dip artisan bread in olive oil flavoured with crushed Chilean peppers.

Which one do I choose? Well, neither. At the end of the week I am shattered, my sofa has been calling me and I just about have enough energy to peel the lid from a microwave meal. Oh, and childcare is a nightmare. The Teenager is at that awful age when he still needs a babysitter but doesn’t want one, unless she’s that blonde girl from the sixth form. The one with the big, you know. Brain.

So, the reality? Me, in pyjamas, facepack on, watching other people have fabulous nights out, on telly. Has no-one set up an events company, where they can bring the party to your house……?

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Sep 27 2012
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Symptoms and Treatment

my make-up hates me

No, really, it does. Not content with forcing me in to flat shoes, MS has also decided to rummage around in my make-up bag and make a mess of my face. If  it is a hot day, I carefully apply minimal make-up for work and when I check the mirror before I leave the house, I look just fine. Ok, you can see I’m wearing make-up and it’s pretty hard to get that ‘au natural’ look in your late 30’s anyhow. In the car, the air conditioning is primed to blast on cool. Park the car. Walk 30-odd metres to the door at work and blam – heat – bright red face. Really, really red, burning and hot. Heat intolerance! Not everyone with MS gets it, but I know it is one of the most annoying and inhibiting symptoms. We become vampires, staying indoors and only venturing outside after dark.

So, there I am, in work, trying to look professional, with a throbbing face, make-up sliding slowly south. I never understood what open pores were until my foundation popped out of them and mushed all over my face. As if this weren’t enough, MS has also decided to have a laugh with applying make-up. One of my last relapses involved my hands not working properly and shaking involuntarily – you can see where I’m going with this. So, rewind, it’s a cool day, I’m celebrating. I’m putting my make-up on for work, reaching for the eyeliner, start lining and I’m drawing on my eyeball. Wipe it off, try again. Beautiful line, just about done….go for the final flick…sheez. End up looking like the end of a very long night on the wine. Ok, try the lipstick. One side of lip done, and the other, yup, you’ve guessed it, all over my face. Scrub this off and repeat.

And finally, if it is a hot day and my hands don’t work – well,  Coco the Clown has nothing on me.

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Sep 26 2012
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The Teenager

introducing the teenager

Teenagers, eh? Don’t you just love them. To be fair, I seem to have a pretty decent model. So far. Anyway, it was hard enough beginning to come to terms with me having MS, far less breaking it to him. He knew there was something wrong, he just wasn’t sure what. He realised I was tired, a bit snappier than usual and I was traipsing back and forward to the hospital, the doctor’s, etc. I was very organised. I had already ordered a kid’s guide to MS, full of reassuring pictures in primary colours and simple text. So, we had to have The Conversation.

The scene was set. I had cooked his favourite dinner, presented him with dessert (normally only on a Sunday), and managed to pin him to the sofa long enough to have a heart-to-heart. It went something like this:

Me: Um, you know, yes. Well, it’s like this. See?

Him: Uh, no?

Me: Well, you know all those appointments I’ve been having? It seems I have something called multiple sclerosis. Nothing to worry about, just thought you should know. Oh, and here’s a little guide for you to have a read of. In your own time, you know? Now, is there anything you want to ask me?

Him: D’uh. Like, I know? Like, I’m on all the forums. I can even pronounce it. I know all about it. Can I go now?

Me: I really think we should talk about this.

Him: Ok. Are you going to die?

Me: Not from MS, no.

Him: Will you be in a wheelchair?

Me: Not for a really long while, if at all.

Him: (jumps up) Cool. See ya!

And there you have it. How not to have an awkward conversation with The Teenager. As long as I don’t appear disabled or different to all the other mums he sees, everything is great. And maybe that’s the way it should be. As a little family, we have just absorbed MS as part of our lives.

He does enjoy calling me ‘special’ though….

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