Nov 08 2012
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Daily Life

All of a twitter

Ooh, get me! After resisting as long as possible, I took the plunge and signed up to Twitter. Blimey, it’s brilliant! What was I waiting for??

I was gently nudged to join by the lovely people on the mumsnet bloggers forum (@LynnCSchreiber, I bow down in gratitude). Suddenly, the whole world has opened up. I am connected to an incredible network. Just when I’m feeling unloved, unemployable and generally everything  ‘un’, I discover there’s a bunch of supportive bods out there.

Watching the drama of the American election unfold was made all the more wicked reading comments by India Knight and Caitlin Moran – almost as good as having them squashed on my sofa next to me, cackling away with a good dose of alcohol and Kettle crisps.

My tweets so far have been pretty uninspiring but I am sure I will learn from the masters. Already I am chatting away to like-minded people. A fellow MSer even re-tweeted one of my blog posts about being sacked for having MS and I’ve had firm support in return. I am not alone.

So, I am a convert, and you will have to excuse the shorter post today – still trying to work out what hashtags on Twitter mean. Should I #hashtag everything? How can I cultivate a clever, laissez-faire tone with my tweets? Any suggestions gratefully received…

Join me on Twitter:  @MS_Stumbling

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Nov 07 2012
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Media

BareFaced Cheek

make upGreat news girls! Children in Need is launching its first ‘BearFaced Day’. On this day, you go without any makeup to help raise money for disadvantaged children, so put down that mascara and hang fire with the lippy.

To persuade us, Louise Redknapp, Lulu, Julia Bradbury and newsreader Sian Williams have been photographed by Rankin, (apparently) without a scrap of makeup on, ahem. Rankin, the world famous photographer. These woman no doubt also have access to world famous beauticians, facialists, dieticians. Who wouldn’t look radiant? I’m sure they don’t do their own housework or ironing or cooking either. They have no money worries, no fear of redundancy, no anxiety about retiring on a decent pension.

So why are they pulling rank and shoving this quite literally in our faces? Is it not enough to flaunt their exalted status to us minions, now they want to strip us of our one last defence against an often cruel world? Is it a case of, ‘see how beautiful and rich I am, you common little peasant, you?’ It is certainly a case of extreme vanity, if nothing else. There is something quite uncomfortable about rich people asking us hard-pressed peeps to part with our money. And in such an audacious manner.

There is a charity which visits woman undergoing breast cancer surgery, giving them makeovers. This has been shown to improve their self-confidence and feelings of self-worth. Can you imagine the uproar if a breast cancer charity fundraised by asking women to go without make up? Women going make-up free and raising funds for disadvantaged children is a very tenuous, slender link, based solely on the double bear/bare sound. Very clever, marketing guys, just jog on, eh?

In my case, I would frighten children and sentence them to years of therapy if I went without my daily slap, which kind of defeats the purpose. I don’t have cancer, but with MS ravaging my confidence, I rely on my box of tricks to set me up for the day. With a bit of makeup on, I can walk (stumble) with my head held high.

However, I would take part in ‘BearFaced Day’ on one condition. That I could wear a Pudsey costume the entire time…

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Nov 06 2012
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Emotions

Long, Dark Nights

I love autumn, the crisp, bright days, the leaves, the bonfires, but it passes all too quickly. Winter? I’m undecided as yet. I’m turning the lights on earlier and earlier and soon it will be dark by 4.30.

I am torn. On the upside, it’s not hot, so no bright red face, sudden weakness or behaving like a demented vampire. I can now stay outdoors for longer than an hour without melting. And when I get tired, there’s no shame in curling up on the sofa with a good book and the remote control come 6pm, as it’s just what most of us do in the winter. I am glad the summer nights are over. It’s unspeakably sad to watch the world go by with your nose pressed against the window.

The flip side though, is being the only adult in the house. The evenings are endless. The clock slows down. I flit from one thing to another, unable to settle properly. It’s astounding how dark it is outside. Darkness does strange things to the mind. Small problems are magnified and big problems seem insurmountable. Old fears seep out like vapour.

Perhaps I have too much time on my hands to think about everything and nothing. I am in an odd limbo-land; still working for two months for the company that sacked me (for having MS). I want to celebrate, feel free, take a deep breath and thank God I am no longer there. But that’s on hold right now until just before Christmas.

Mind you, I used to live in a Nordic country, where it was dark by 3pm in the winter, wasn’t light the next morning until 10 and alcohol was shockingly expensive. Now, that really was grim.

 

 

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Nov 05 2012
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The Teenager

Rugby Mum…..And MS

Rugby MumI like The Teenager playing rugby. He won’t mind me saying he was pretty dire to start with, a couple of years ago, but he’s nothing if not determined. Now, he’s got real promise and has offered to buy me a luxury penthouse granny flat if he becomes famous.  Only problem is, I don’t understand the game at all.

Before MS, I would duly stand on the sidelines, muffled in a couple of layers of jumpers, wellie boots on and teeth chattering. I took my cue from the screaming crowd, and cheered along when something happened. Sometimes for the wrong team, but never mind. I schlepped to every game, took him to every training session and washed a pile of muddy clothes twice a week.

We even went ‘on tour’ last year, aka an excuse for the parents to let the kids run wild while we got blind, steaming drunk. So drunk, that I was nominated to go first on the karaoke, where I sang ‘Gold’ atrociously and still got applauded. And we had to wear silly hats all evening.  This was right before my first major relapse and there was an inkling there was something wrong when I went bright red in the face after a leisurely stroll and my legs turned to jelly.

So now, post-MS, the rugby routine is a little different. I still take him training and I still wash his kit but there’s no way I can go to every game. I can’t stand up for long, I’m normally tired beyond belief and my legs get too weak. If there’s an away game, I have to ask for The Teenager to have a lift as I don’t drive too far – my foot cramps up. Which is awkward, as every time I see one of the rugby parents, they scrutinise me closely, look me up and down and say, ‘But you look so…well?’  A code phrase for, ‘lazy cow, any excuse, eh?’

Yesterday, the game was cancelled as the pitch is saturated with rain. Am I unhappy? What do you think……

 

 

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Nov 04 2012
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Daily Life

MS Buddies

best friends foreverOver the past year, I’ve met a whole bunch of people I would otherwise never have crossed paths with, from all walks of life and all ages. Our common feature is that we all have multiple sclerosis.

As a side effect of this horrible illness, it’s by far the best one. Having the diagnosis gives you a free pass into a whole new world. There’s online forums, local support groups, telephone helplines and charities devoted to fighting on your behalf.

When you first meet a fellow MSer, there’s always a quick exchange of your MS journey, i.e. ‘diagnosed last year, relapsing remitting, taking Tysabri, what about you?’ before chatting away as normal. And when you say you’re tired, they get you right away. The MS fatigue, the bane of my life. I can’t describe it to people who haven’t had it. The closest I get is to liken it to a massive energy switch being switched off internally and it can strike out of the blue. You have to sleep. Now.

So there’s something really refreshing about getting together with other MSers. You belong. You don’t have to explain. You can just have a good old whinge.

I went to the local MS Society Christmas party yesterday. There was a huge buffet and a pub crooner for entertainment. We sang along to ‘Delilah’ and sat in two long rows of tables, a disparate bunch of people. I only knew a few people there, but had a good catch up with them and we kind of understand each other. I might not see them again for a couple of months, but we’ll just pick up from where we left off.

But my friends from BMS (before multiple sclerosis) are equally important. They’re the ones who tell me to stop whinging, shut up and pull me back into normal life again…

 

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