Everything’s Coming Up Roses…

everything's coming up rosesI’ve been feeling oddly laid back about my recent accident, and it’s not all down to the painkillers. Or chocolate.

Like a lot of people I’ve spoken to over the last few years, coping with something life-changing such as MS puts things into perspective. Life is constantly throwing up obstacles and no one ever said it’d be easy.

But isn’t that the point? We expect things to tick along nicely –  the fulfilling job, the blessed marriage, the nice house, the well-behaved kids – and in striving to achieve all that security, we bring the stress into our lives. When things go wrong, we can’t cope.

I read an article the other day about the American philosopher Alan Watts, who wrote ‘The Wisdom of Insecurity’, a radical approach to dealing with anxiety. He writes that in uncertain times, we respond by chasing after security in order to make the worry disappear, but the struggle to feel secure is the very thing that causes anxiety.

He puts the case that life is inherently insecure and the only way not to feel insecure is to dive straight into reality, with all its uncertainties.

Blimey. Mind-bending stuff for my MS brain, but I think without realising it, it’s the way I live now. I have struggled over the last decade to create security for me and The Teenager and it’s been a daily uphill slog. My anxiety levels have shot through the roof at times. And then one beautiful, sunny day, MS crashed into my life and smashed it to smithereens, unveiling the stark reality that there was in fact no security in my life at all.

So, post MS-devastation, I have handled this  unexpected accident pretty well. It happened. It’s grim. But there’s absolutely nothing I can do about it and raging about how this has yet again brought chaos and uncertainty to my life won’t do me any good. Life is never secure and anyone living with MS knows that, so why not turn it to our advantage?

Forget the roses, I’m just like bamboo now – I sway with the wind but I won’t break.

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Do You Suffer From MS? I Don’t.

suffering from MSGuaranteed to set my teeth on edge, the term ‘MS sufferer’ is up there with ‘But you look so well’ and ‘Oh, I get tired too.’

It makes for good copy – by starting an article with, ‘MS sufferer Mrs Jones….blah blah blah’, the reader is immediately directed to feel a certain way – pity, thank god it’s not me, poor thing.

Well, here’s the real news – I don’t want to be pitied. I don’t want anyone to look at me with big, sad eyes or vicariously imagine how my life is.

The media has a lot to answer for. Most of us who live with MS fly under the radar. We get on with life, we hold down jobs, we raise families, we cope. We don’t want to be lumped together in a mass of misery.

It’s similar to the pressure people with cancer can feel under to ‘fight back’ against their illness and if they ‘fail’, well, they fought a brave battle, didn’t they? Perhaps because MS is at present incurable, we are not urged to fight back, just suffer instead, hopefully in silence.

I am many things. A daughter, a mother, a colleague, a student, a friend. I also happen to have MS, I just don’t feel the need to qualify the term.

I’m not saying life with MS is easy. It’s anything but. Yet by labeling me a sufferer, I am instantly at a disadvantage, pushed into the role of a hapless victim, MS being the only defining feature of an otherwise fulfilling life.

So how should we be known? Well, it depends on the context. If someone is talking about me as a mother, then I’m a mother, not a ‘mother suffering from MS’. If it’s about my job, then I’d like to be known as an excellent worker, not ‘working despite suffering from MS.’

And if the conversation is simply about MS, then just call me a ‘person with MS’. Or if you want to be really kind, ‘that fabulous person with MS’….

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Livin’ La Vida Sofa…

livin' la vida sofaSince my spectacular fall last Thursday, I have been hobbling around at home going stir crazy.

I made a break for freedom on Sunday when a friend enticed me outside with the offer of brunch and some retail therapy. He quickly walked ahead of me as I yelled, ‘Hello trees! Hello shops! I’m out!’ and grinned manically at everyone I passed in the street.

Two hours later he dropped me back home, full of coffee but exhausted. My leg was throbbing and as I peeled my jeans off the bruise spread even further. Oops.

I have a sinking feeling the injury will take a lot longer to heal than I first thought. I’m not going anywhere this week, so I skulk around the house and spend far too much time on my sofa.

When The Teenager comes home from school, I bribe him with cake in the vain hope he will sit down long enough to tell me what it’s like in the outside world but all he wants to do is have another look at my bruise before heading upstairs to tweet and get up to the next level of Candy Crush (no idea).

I have set up a Command Centre from my sofa – everything I need is within reach. Remote control, magazines, mobile phone, Bacon Bites. I have watched every programme on my Sky Planner and now have to resort to watching Catherine Cookson adaptations and angry people shouting at each other on Jeremy Kyle.

Friends and family have been brilliant. My mum comes round every day with gossip and my latest batch of laundry. A friend dropped off a huge Victoria sponge on Saturday. Even the cat is behaving, although we argue over duvet rights on the sofa.

My days are punctuated by painkillers and chocolate (it’s medicinal). I really should get cracking on my next essay. I need to put an online shopping order in. My bank statements are staring at me from my desk. The dust balls are having a party and my garden is sadly neglected. Life is on hold.

I remain optimistic though. MS has taught me to expect the unexpected. Soon enough, things will return to normal. In the meantime, a friend is coming over soon with the new issue of Grazia and I’m going to chuck the cat off my duvet. Again.

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How To Lose Friends And Alienate People

IMG-20130511-00150Having something as serious as MS enter your life changes it forever. Family, work, future plans, and of course, health.

Sadly, it also lets you find out who your true friends are.

Right from the start, cherished friends deserted my sinking ship just when I needed them most. Some left abruptly without a backwards glance, others backed away slowly, step by step.

Why? I guess there are many reasons. Were they worried they’d be roped into looking after me? Would I rely on them more than usual? Were we now too different, too alienated from each other to have much in common any more?

Conversely, other friends rose to the challenge – they stuck by me through everything. They listened to me rant and rave, they wiped my tears, poured my wine and probably ended up knowing more about MS than they could ever have imagined.

Two years on, I thought nothing else could surprise me. I have a fantastic circle of friends and I hope I’m a good friend to them too, and as the MS crisis has receded, our relationship has re-balanced itself.

A couple of weeks ago, my world was rocked once more. An old friend got back in touch. We met years ago in work and although we only kept in touch sporadically, we always picked up where we left off.

We chatted by text and I suggested he look at my blog to catch up with everything that had happened since we last spoke. And that was the last I heard from him.

I feel hurt. Actually, I feel extremely hurt. And angry. The ripples and repercussions from MS are still going on, two years down the line. Now I’m semi-housebound once more after falling last week, I have too much time on my hands to reflect on this. And do you know what? It’s all good.

Those ‘friends’ who’ve left have made way for even better friends. They took their hang-ups and made space for new friends to fill the void.

If any of my friends ever face a situation like I have and I’m not sure how to handle it, the least I can say is, ‘I don’t know what to do or say, but I am here for you, you know that.’ And that is the mark of a real friend.

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Stumbling In Crutches

imageI am feeling rather sorry for myself. As I write, there is a pair of crutches next to me and I am floating among pink, fluffy clouds thanks to the strong painkillers.

Yesterday I fell quite badly, and to be fair, it wasn’t due to the MS, it was me not looking where I was going.

Unfortunately though, my MS treatment has left me with a tendency to have out-of-proportion bruising, so my leg is now a fabulous riot of colours and has swollen so much I can’t get my jeans on. To top it off, I think the shock of it has increased my nerve pain temporarily so I’m buzzing and tingling all over.

The bruising must be impressive as The Teenager keeps wanting a look at it, saying ‘ewwwwwww’ before taking another look.

All in all, not the best of days. Thank goodness for family and friends. My partner-in-crime at the museum trip (see post below) came up trumps and after making numerous phone calls, tracked down a pair of crutches I can borrow. My mum is carting away loads of laundry for me and drops round food supplies, flowers and news of the outside world.

So, yet again, I am whiling away the hours at home, not studying, not writing up my essay notes and chomping obscene amounts of Maltesers and Bacon Bites. Ho hum. I have worked out how to switch on the fire with a crutch without getting off the sofa, I count down the hours to my next lot of painkillers and The Teenager has had two takeaways in a row.

I’d like to say I have learnt something from this experience, that I will never, ever take my health for granted, but hey, didn’t I just go through all this recently with the whole MS saga? I don’t need any more time out to re-evaluate the direction of my life. Been there, done that, drowned my sorrows.

So I’m off to have another pity party and pop more painkillers. My mum is at the supermarket buying me a tub of prunes. Life goes on…

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