Category Archives: My Ramblings

Dec 15 2014
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My Ramblings

My Parallel Life

smileI often wonder what my parallel life would be like.

We’ve all been there; the dangerous fork in the road at diagnosis.

On the one hand, there is the weight of societal pressure – MS is ‘other’, it’s incurable and  it’s quite often progressive.

On the other hand, there is the relentless, miserable push to fight back, beat it, win the battle that always weighs heavily on our minds.

What should we do?

Conform to that first pressure?

In my case, if I’d done just that, I would have meekly accepted the year-long systematic bullying in work. I could have said, ‘thank you’ when they sacked me for having MS. Of course. I would quite possibly have taken their sage advice, ‘but surely you can live on benefits now?’ ‘We simply can’t have you here, you’re a liability, don’t you understand that?’

Fair play to them, after a meticulously well-planned and devilishly malicious campaign (by three grown adults, I mean, really?), I took my P45 and left. And quickly slid into a black pit of utter despair.

Conversely however (fair play to them) they handed me back a reason for picking myself up. I discovered I still had a single shred of dignity and decided to fight back.

Fast-forward from that awful day in October 2012, I am living a life I love. I took my employer to court and won. Not much, but just enough to take The Teenager to New York to show him where I lived when I was 19. Bizarrely, as part of their settlement, they didn’t ask for non-disclosure. Perhaps they knew I would never sink to their level and to this day, I have never publicly named their company.

Instead, I chose a different life. I kicked back against everything I was expected to be – grateful, humble, diminished. I decided to draw up mind-maps of what I wanted to achieve, despite it all. Funnily enough, I did the same when I was 17 – travel, learn languages, have kids and work out how to wear a beret with panache. I failed the last one. Badly.

So now, at the grand old age of 41 (but apparently I look six months younger), divorced, single mother and living with MS, I take absolute pride in how far I have come. In my ex-boss-led parallel life, I would be scratching around for crumbs of comfort, falling helplessly into a routine of abject nothingness.

It may not be the life I envisaged for myself (those grand plans of hosting literary ‘salons’ in a plush, velvet room in Paris, learning how to make the perfect Martini, doing something – but it’s better than the alternative).

I am not fighting back. I’m not in a war with MS. I am just deciding that what I do now should mean something.

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Dec 07 2014
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My Ramblings

Excuses, Excuses

excusesHmm, a bit of a controversial post, so if you are of a nervous, and/or trolling disposition, click away now.

I’ve been thinking about a whole range of people I’ve met over the last few years; people who’ve had strokes in their 40’s, people who have faced tremendous adversity and of course, people with MS.

Taking MS for example, as I kind of know a bit more about that than other illnesses. I’m not talking about newly-diagnosed people – I was an absolute train wreck for over two years  (and some would say I still am, but in moderation) – but people who  have had time to adjust to MS and all it entails.

You know them – ‘Ah, no, couldn’t possibly do that, MS, you know?’ or ‘would love to, but can’t, MS’. Or even, ‘what do you know, my MS is sooooo much worse than yours’. I’m not talking about people who have a drastic decline in health. I’m talking about the majority of us who live with MS.

Of course, the image surrounding MS doesn’t help. When people – including medical professionals – recoil when you explain your diagnosis (MS being up there with the scariest of the scariest illnesses), it can be all too easy to slip into the role of wearing MS as a badge of suffering and an excuse for not partaking in ordinary life any more. Of course, of course, life has changed beyond all recognition. But. I have met people who have taken this mantle very early on and displayed it for all to see, to the detriment of everything else. In short, it becomes their raison d’etre: I can’t do it, I have MS.

I have experienced the flip-side to this myself, many times – I can be praised for how marvellous I am to take a Masters, considering. Or continue to work, considering. However, I also know that my job-seeking days are almost behind me. I can breeze through the first interview then come to a halt at the second. You have to come clean. CV in the bin. Yes, that’s my MS excuse, but I sought other avenues and bugged friends until one of them, my long-suffering, now-ex-best-friend took a chance on me.

When MS obliterates your life and smashes it to smithereens, nod politely at the people who look at you with doleful eyes, thanking the heavens it’s not them. Do something extraordinary. If people expect nothing from you, surprise them. You have a blank page, ready to write on it anything you want.

If you decide to take up that long-forgotten hobby, do it. If you want to launch your own micro-business from your kitchen table, start a bee-keeping course, learn to make candles, do it. Not only will  you achieve something new, people will congratulate you. A win-win situation, and liberating?

For the record, I know a good few MS publications are full of people doing stuff waaaay beyond the ordinary. I will not, for the record, take up skydiving. The nearest I got was Nevada where I clung to the pilot as my friend threw himself out of a plane (which had no doors). And I won’t be trekking around Nepal any time soon. With my legs?

What I mean is, MS is a wonderful excuse, and it cuts both ways. It is an excuse to duck out of life and host an endless pity-party with like-minded individuals, OR it can be a gateway to an amazing new way to live.

Get me. Last time I saw my tutor for a portfolio one-to-one, we were talking about the possibility of progressing to a PhD. Lol. I mean, really? I have MS, don’tcha know?

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Nov 30 2014
16 Comments
My Ramblings

I’m Not Special

carpe diemI have MS.

I’m not special. Or different. Or ‘suffering’, the word I hate most when referring to people with MS.

I am me. L’il ol’ me.

My brain may have taken an extended leave of absence and dotted itself with lesions, but I remain … me. Quintessentially ME ( I love that word – ‘quintessentially’, not ‘me’ ).

I think I have now  – gulp – come to the understanding that MS is here to stay. Yup, it took a while, but I can’t show it the door so what are my options?

Well, I no longer mourn what could have been, what should have been. What’s the point? Besides, my brain has forgotten so much and just struggling to remember life pre-MS is a stretch. I could have done what so many people told me to do, ‘whaaaay hheeeyyy! Give up work why dont’cha, you’re disabled, like, d’uh’.  MS is up there, among the most serious of illnesses.

And for a very long time, it was all-encompassing-serious to me. And of course, in some ways it still  is, as it pokes its way through everyday life; the stumbling, the agonising nerve pain every evening, the dropping, the falling, the garbled speech. Never underestimate MS. But it doesn’t make me special and it doesn’t mark me out as different to any other person with their own unique agony, whatever it may be.

If you had told me three years ago that I would, in my late 30’s and (very, very) early 40’s spend most of my time on my back, I would have been alarmed. Now, I am savoir faire with fatigue and all it entails; I know and recognise the signs. The sofa is my command centre and I have everything to hand, although the pesky cat has now taken up residence on the other sofa, out my reach since I de-flea’d her.

I’m not special yet I am acutely, horribly aware that I  have surpassed my father’s MS by six years, not only in terms of his age, but also the seriousness of the illness as he was living in an era before disease modifying drugs. So I refuse to be defined by MS. I am a heck of a lot more than that. The secret to controlling this awful illness is to do what it least expects you to:

  • Get out there. Make new friends. Try new things. Surprise yourself.
  • MS is cruel, there’s no denying it. But don’t deny yourself any experience, no matter how ‘trivial’.
  • Allow MS to throw into sharp relief all you want to achieve in life.

I am not suffering from MS. I thrive in spite of it.

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Nov 22 2014
6 Comments
My Ramblings

Sanctioned Deviance

TalcottIf you’ve never heard of Talcott Parsons, you’ll almost certainly have felt the crushing effects of his ‘sick role’ discourse within medical sociology.

He’s the bloke who argued back in 1951 that being ill means you enter into a state of ‘sanctioned deviance’ and are therefore no longer a productive member of society. And there’s more.

My wicked deviance (for I am legally disabled) must then be ‘policed’ by the medical profession. In short, I disturb the normal social function of society. Chortle. Me?

I’m writing about this as I seem to fall into the camp of an Invisible Illness Unless I Do Something Spectacular, such as fall flat on my face or play pinball with walls. When my condition is obvious, there is an allowance so long as I play by the rules. 

Yet when it’s invisible (extreme fatigue, brain meltdown, endless nerve pain), I’m either faking it or playing up to it. I can’t win. I’ve variously been told to give up work, to find a ‘proper’ job, to go on benefits, to stay at home and watch telly. Wish they’d make their minds up. 

I’ve recently heard, ‘but you’re taking a Master’s, you can’t be thaaaaaaat bad’. The underlying insinuation being ‘oi  you lazy sod, no more malingering, be more… productive rather than floating around in hand-knitted scarves writing about trees and ladybirds’. 

Regular readers will know two things about me: first, I struggled badly during the last two years of my degree as I was going through a perpetual cycle of relapses. Second, I no longer have a set career path for a whole host of reasons. So why not push myself into something that will challenge me on every level? In all honesty, it has taken me to the limit. The emails between me and my tutor confirm this – full of doubt, fears of failure and a sense that I really had aimed way too high.

I have since settled down into academic life and my tutor is no doubt relieved not to have to handle any more tracts of self-analysis. And they were pretty badly-written streams of consciousnesses, natch.

So I challenge the sick role wholeheartedly, as have many critics. I am a productive member of society. I am single-handedly raising a well-rounded (and opinionated) Teenager. I run my house well. The cat is always fed. I work. I study. And I always turn up on time for my monthly blood tests at the doctor’s surgery. Early, in fact.

Yet there still exists in society a great desire to hold onto this sick role theory. It suits them; we can be parcelled and put to one side ready for them to cut our much needed support and mock us. We are in the stocks and right now society is taking great delight in chucking everything rotten at us.

Is it just me or does dear Mr Talcott bear a passing resemblance to someone else? Must be the moustache.

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Nov 05 2014
14 Comments
My Ramblings

MS Is What You Make It

FuzzyA while back, I never thought I’d write this post.

MS was an ugly intruder, returning again and again, chipping away at everything I once held as true.

It took my health, of course. But it took more than that. It spirited away my social life (who wants a friend who trips over when sober? And cries down the phone?). It stole my son’s transition into teenagerhood – it was marred by worry and fear. It stole my career.

In essence, it took my future. And it tried to take the very core of me, my spirit.

Well, MS, be damned. You can get away with the trembling, the nerve pain, the stumbling. But I will still barricade the gates so you won’t destroy me entirely.

Before anyone takes offence at the title to this post, MS took my father. Way back, before treatment, drugs, MRI’s, 1978. I was 4.

I live in a different era and I believe that MS is what YOU make of it.

I’ve been to hell and back and have still not fully recovered. I live in fear of the treatment not working and I’ve already had a relapse, plus complications (I admit, the over-active thyroid has short-term delights, such as my miraculous weight loss, but it won’t last and the Wotsits are already calling…). My hands don’t work properly and the foot drop is verging on the comical, which my bruises bear witness to. I am covered in them.

MS is horrendous. It sneaks up and unleashes a bewildering array of symptoms on us. But if you can come to terms with the fact that Life Will Never Be The Same, you’re already halfway there (honestly).

Your families may ignore you and you will probably lose friends. You may also lose  your job, as I did (don’t forget, I won the legal case). But. For all that, you will transition into a whole new way of living. You will adapt and you will overcome, to coin a tired phrase. Some of you are happy to say that you have MS, MS doesn’t have you. Well, it does. But! The way you receive and react to that news is the key to living a brighter future. .

We cannot deny it’s a nasty existence. It is right here, right now and it always will be. So we adjust to new ways of living, despite this foul illness.

We can do this, right?

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