Friday…at last

Stumbling In Flats - life with multiple sclerosis 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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my make-up hates me

Stumbling In Flats – living with multiple sclerosisNo, 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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introducing the teenager

Stumbling In Flats – living with multiple sclerosisTeenagers, 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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Singing in the rain

Stumbling In Flats – living with multiple sclerosis

I spend a lot of time lying down. Fatigue in multiple sclerosis is no joke, although my friends think it’s a pretty cushy side effect. I have bought a new sofa, hung the flatscreen on the wall so I can see it better and worked out how to put the phone on silent. So I like the rain. A lot.

Why? Two reasons. First, I can’t stand any heat at all now and will very quickly look like a hot, red, angry tomato if I am out in the sun for any length of time. Second, and most important, the rain keeps people indoors, lying down, watching telly. Just like me. Now I don’t feel quite so guilty that I am not outdoors, doing lovely sporty things or sunbathing or walking…in the sun.

So, my sofa is ready. The cushions are soft, the throws casually draped over the arms. Pile of magazines to one side, stack of books on the other. Bar of chocolate hidden from The Teenager under a bank statement. Let it rain…

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The Loneliness of the Long-Term Diagnosis

Since being diagnosed with multiple sclerosis, I have never been surrounded by so many people (usually of the medical variety) yet felt so utterly alone. Bereft, cast out, somehow ‘other’. Just over a year ago, I was living a fairly normal life, doing fairly normal things. Sure, we all feel different at times, a bit lonely, a bit out of the loop, but with any luck, we soon gather ourselves together and re-join the masses.

Being stamped with an indefinite diagnosis however, permanently removes you from normal society, whether you like it or not. I felt a sense of shame ‘admitting’ my diagnosis to friends and family and was angered at their awkward, embarrassed reactions. Perhaps the slightly musty, old-fashioned image of MS does not help matters, despite it technically being a young person’s illness. Wheelchairs, catheters, trembling and paralysis were the most common words mentioned by my well-meaning friends along with the horror on their faces as they briefly considered the scenario of wheeling me to the park, wrapped in a tartan blanket to feed the ducks.

How to describe the aching loneliness of waking in the early hours of the morning, rigid with fear? Or the recurring thought: This. Cannot. Be. Happening. To. Me. But it is happening, and each new medicine, neurology appointment, MRI scan, blood test and flu jab add another thin layer separating the me now from the me then. My life was tossed up into the air one day last year and as it has fallen back down, there is a new order, a new symmetry and system to my life. Normal life must fit around appointments, fears and anxiety must be measured against reality and worst-case scenarios, and precautions taken.

I have lost friends. They simply peeled away, apologetically. I have made friends with the deep fears in my mind. I have faced up to them, stared them down, but still there is the gnawing loneliness. Or is it simply facing up to life as it really is? Unpredictable and utterly random.

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