May 24 2013
10 Comments
Emotions

Transformation. Complete?

When your world is turned upside downTomorrow it will be exactly a year since I was unceremoniously ushered out of the MS Limboland waiting room and into a whole new world of clinically definite multiple sclerosis.

MS has had an impact upon every area of my life. Everything has been transformed and I’m not the same person I was last May, but for my MS anniversary, I am going to concentrate on the positive changes.

I’ve done my grieving, I’ve cried myself hoarse. I could either live out a sad, bitter life, railing against the injustice of it all or seize this opportunity to change my life for the better.

I’m full of gratitude for the support network I have – the family and friends who stuck by me through the dark times. The ones who made a swift exit? Probably for the best, eh? I’m indebted to all the healthcare staff who pulled me through and who continue to support me and I’ve made a whole new circle of brilliant friends.

Being bullied at work and subsequently sacked simply for having MS showed me that when I’m pushed into a corner, I can still come out fighting. Ironically, as my colleagues were trying to crush my spirit, the whole experience made me stronger, braver and has restored my self-esteem.

Probably the biggest transformation though, is within my own character. I’m no longer willing to live a life according to what is ‘normal’ or what is expected of me. I am choosing my own path. For far too long I have gone through life reacting to the whims and actions of other people, forgetting in all the chaos that in fact, I had a choice all along.

It took something far bigger than those people to turn my world upside down and to put into perspective just how fleeting and how beautiful life is. MS is here to stay, for now, and as long as it does, we have to learn to get along. It’s part of me, so I can’t hate it. I have to keep learning to adapt, take the good days with the bad. Is the transformation complete? You betcha. Phase One at least….

Tagged , , , , , , ,
May 22 2013
4 Comments
Symptoms and Treatment

Haematoma Blues (And Purples, And Reds…)

haematoma bluesMy magnificent bruising has been reclassified as a haematoma, which probably explains why I’m still hobbling around almost two weeks since my accident.

I was lucky enough to see one of our fabulous MS nurses at the Work and MS conference on Saturday and during a coffee break, I rolled my jeans down in the loos to show her the injury.

She carefully examined it and suggested I take myself off to Accident and Emergency to have it scanned in case there was an underlying fracture.

To cut a long story short, my mum took me that evening and the good news is, it’s just a haematoma, not a fracture. The bad news is, the only thing I can do is wait for the swelling to go down. It’s not going anywhere fast and neither am I. The pace of my life wasn’t particularly speedy before (take a bow, MS fatigue and foot drop) but has now slowed to a virtual stop.

I’ve been told to keep my leg elevated as much as possible, so needing no excuse to lie down and fill my brain with trashy tv when I should be slaving over an essay, my sofa is now almost permanently in use, much to the chagrin of the cat.

The Teenager marvels at my ‘cushy’ life and prods the lump on my leg in wonder. He’s very much enjoying visiting friends for tea after school and has perfected his sad face when talking to their parents, ‘oh, my mum’s dreadfully ill, she’s got this massive  thing on her leg, the size of a rugby ball, honestly, she can barely speak, it’s that bad’ before gratefully accepting yet another chocolate roll or can of Coke.

I’m sure I’ll be back on my feet soon enough and will no doubt look back wistfully on my weeks at home when I go back to work.  But I do miss the banter and bacon rolls and even my nickname, ‘Half-Shift’…

Tagged , , , , , ,
May 20 2013
15 Comments
Work and Studying

Speaking Out…

Working With MS

Four out of five people with MS become unemployed within 10 years of diagnosis.

One in four people with MS of working age are employed, compared to three out of four of the wider UK population. 

Shocking facts, considering MS is the most common neurological disorder among young adults and is most often diagnosed between the ages of 20  and 40.

With this in mind, and my experience of having been sacked after my own diagnosis, I attended the ‘Working With MS’ conference organised by the Multiple Sclerosis Society Cymru in Cardiff on Saturday. My leg was still excruciatingly painful so I took a walking stick, dosed myself up on painkillers and put a brave face on.

I had been invited to sit on a four-person panel of people with varying experiences in the workplace and we would each talk about how MS had affected our work. I’m not a public speaker by any stretch of the imagination and I was panicking. I used to hate standing up in school to talk about ‘What I Did On Holiday.’ I go bright red in the face, completely forget what I’m talking about and start gibbering nonsense.

I needn’t have worried, it went well (I hope). I am passionate about encouraging people not to accept bullying or discrimination at work. I was bullied for over a year, a sustained campaign to force me to resign. When I didn’t, I was sacked. I was coping with this alongside going through the whole MS diagnostic process and the combination of the two nearly drove me over the edge.

It was without a doubt the most difficult and soul-destroying time in my life and I don’t want anyone to go through what I did. With incredible support I started tribunal proceedings and won my case.

The conference was an excellent source of information, but we still have a long way to go to encourage people with MS to stay in work, to ask for adaptations and to educate employers. We have a lot of talent between us and it would be a travesty to let that go to waste…

Tagged , , , , , ,
May 18 2013
6 Comments
Emotions

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.

Tagged , , , , ,
May 16 2013
4 Comments
Media

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’….

Tagged , , ,
← Older posts
Newer posts →