Category Archives: My Ramblings

Apr 29 2015
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My Ramblings

Reasons To Be Cheerful?

cheerfulI’m not aiming to be flippant, but let’s look on the bright side.

Is there one to MS?

It’s up to us. I’ve established that MS is:

  • Crap
  • Forever
  • Crappily forever

So. Life with MS is crap. On a dramatic level, it took my father from me, at the age of 35. I was 4 and a half.

On a less-dramatic level, I hope I can show that life with MS is not The End.

Strangely, I have a lot to be thankful for:

  • Life is wonderful and I now live it day by day.
  • Life is unexpected.
  • Life is a learning curve.

Ok. So, I was bitterly, utterly depressed for a full two years following my diagnosis. Not helped by a toxic working environment. Or having my partner leave without a backwards glance. Or … you get my meaning.

Anyway, almost three years down the line from The Diagnosis, I have finally realised that MS is here to stay. And if it’s here to stay, then I might as well get used to it. I actually struggle to remember life pre-MS. It shook me (us) up, it rocked the foundations of our lives and it had no mercy. What it left was a tidal quake of regrets, sighs and a lot of evaluation.

So, it rocked my life, and how. I was ‘lucky’. I was not as young as my father, who left before we knew him. I was not so old as to be set in my ways. I was 37. The Teenager was just moving from 11 to 12, seismic in Teenage years. I’d had my wild, crazy years and could still bore anyone passing with my reminiscences.

Me and The Teenager have gone through it all pretty much alone. We’ve had tears, tantrums and turmoil. Now we are in GCSE year, we’re shifting back to how it should be: me nagging him, rather than him reminding me to walk carefully.

It’s been a journey, to use a hackneyed phrase. Are we through the worst? I don’t think so. But that’s another challenge, for another day.

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Apr 26 2015
8 Comments
My Ramblings

Zero-Hours MS?

zeroMS:  Right, I need you for at least 35 hours this week, probably more. Can’t tell you which ones just yet. Ok?

Me:   Gah. What about next week?

MS:  Don’t know yet, wait and see. Who knows? And why would I care anyway? S’MS, innit?’

MS is the health equivalent of a zero-hours contract; you will never know from one week to the next just what it has you down for. Don’t bother making plans, MS has bigger ones. It’s the not-knowing that gets to you and MS is a ruthless master.

With a zero-hours-MS contract, life cannot be planned. You’re at its mercy, plain and simple.

So you thought you’d schedule a catch-up with a friend on Tuesday? Well, think again. MS could chuck a lightening bolt of fatigue your way. Or maybe it’ll play with your legs. Or your arms. MS will have you at its beck and call.

I have two weeks off work. Lovely. On Saturday, I took The Teenager to his Teen-Fit class. Fabulous. I sat in the cafe, leafing through newspapers and trying not to get annoyed at the yummy-mummy encroaching on my space inch by inch with her bag full of felt-tips and books about potty-training.

‘Now, Zephyr, you know we don’t respond to our very natural, very understandable urges here. Let’s see. What does Jake do in the book? Yes! He sits between mummy and daddy, yada, yada, yada.’

Inexplicably, and I can’t blame Mrs Boden/potty, I was suddenly exhausted. Utterly pole-axed by fatigue. I checked the time. 20 minutes until The Teenager would sweep through the cafe doors, triumphant and radiant, chattering away about training plans and healthy proteins.

I had been awake for less than four hours. Ridiculous. Scary. I yawned all the way home, nodding in the right places, until I suddenly had to blurt out, ‘So sorry sweetie, I just have to sleep. Gah. I’m really, really sorry.’

At home, I collapsed onto the sofa, drew my blankie and the kitten around me and surrendered to MS. I woke up two hours later.

I switched my phone back on. Three texts from The Teenager:

What we havin’ for lunch?

??????? Helllloooooooo? Lunch?

Starvin’. Wastin’ away 🙁 ‘

I texted back, fingers weary and bleary. ‘S’pesto pasta, nom nom’.

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Apr 03 2015
18 Comments
My Ramblings

The Many Faces of MS

duckAfter our interminable wait in MS Limboland, after our diagnosis, after our anguish of coming to terms with MS, just how do we show our MS to the world?

I’m only wondering as I’ve gone from one extreme to the other in the space of a month.

Four weeks ago I was catapulted back to square one, with the worst symptoms I’ve had since the very beginning of MS. I was rigid with panic, terrified as to what it could mean for me and The Teenager.

I was pretty much unable to function at all. In the last few days though, I’m suddenly on much more of an even keel.

It goes without saying , my despised eternal enemies – foot drop, heat-intolerance, fatigue, not-working hands are still here and no doubt always will be.

Who’s idea was it to buy the kitten two ‘fun play-tunnels’? She probably has more fun watching me trip over them than running through the pesky things and batting the tied-on plastic balls at each ends. She strategically shifts their locations around the room, so when I come back from work, she sits back and waits for the hilarity to begin before rushing to her food bowl and looking at me with huge, pleading eyes

So if I’m confused by this rapid turnaround of symptoms, how do we explain this to other people? And how do we come to terms with the fact that it might not last. Or maybe it might. For a while longer. Or maybe not.

I’m sure my friends and family are realising that I’m just not the same person they used to know. One day I’m fine. The next I’m not. Essentially, MS is always, always at the forefront, no matter how well it’s behaving itself. I try to shove it down, squash it into submission but it’s forever seeping through the seams of my life, colouring everything it touches.

I think it’s got to the point that whenever I meet up with someone, the first thing we have to do is establish where I am on the MS-Scale. After that, what should I do? Brush it under the carpet? Dismiss the hateful symptoms with a wry laugh? Or bore them rigid with dark fears?

There is no easy answer. I worry that ‘what’s she banging on about (again), she looks fine‘ is lingering in their minds; I run a house, I’m raising a Teenager single-handedly, I’m taking a Master’s, I work. I can’t be that bad?

I wish people could see the network of mechanisms behind the scenes – the forward-planning, the endless lists, the time-management. It’s exhausting. I’m like one of those ducks – calm on the surface, gliding along, but with little flappy feet frantically pedalling, unseen.

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Mar 03 2015
12 Comments
My Ramblings

What MS Isn’t

dancingThere’s plenty written about what MS is, but what isn’t it?

It’s not:

  • An ‘easy’ illness (I’m probably not the only person to be told, ‘Well, thank goodness it’s nothing more serious, eh?’)
  • An excuse – it is what it is and I won’t be apologising for it
  • A competition – why tell me your MS is so much worse than mine? If it makes you feel better, go ahead; it just makes me feel guilty
  • Always obvious – if you passed me in the street, you would have no idea I had MS (until I stumble, but hey, I could be drunk?)
  • Cushy – you might think enforced sofa-dossing is a dream come true, I hate it with a passion
  • The same for everyone – put 500 MSers in one room and you’d have 500 different stories

Recently, stem-cell treatment for MS has hit the headlines, and how – all the tired phrases were rolled out: ‘MS sufferer’, ‘cut down in the prime of life’, ‘tragic’. Funnily enough, I am none of these. However, I have been contacted by various people over the last few days all telling me the same thing – MS is curable! You can get back to real life now! You can dance again!

Now, anyone who has ever seen me dance will know that this is not necessarily a good thing. The only shapes I throw are the bodies of other people across the dance floor as I bump into them. Yes, the news from the trial is wonderful and I couldn’t be happier and of course the media loves a good news story, but behind the headlines there are thousands of us, millions of us across the world, just trying to get on with life.

MS, and more importantly, living with MS, has changed phenomenally over the last three decades. Sadly, the public perception of it is lagging far behind. Behind every diagnosis there is a unique life story and we don’t want that to come to an abrupt halt just because our brains threw up one lesion too many.

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Dec 19 2014
20 Comments
My Ramblings

MS + T + W + MA = Stress?

new to MST = Teenager and W = work – an impossible equation.

The MA is just the wildcard.

MS = LIFE x 1000.

I’ve been exploring the theme of MS and radical life changes recently, and a good few of you have got in touch with your own incredible stories, both personally and through the blog.

The overriding theme is, ‘ok, I’ve got MS, but I changed my life for the better, and decided to do what I always wanted to, sticks/wheelchair/nerve pain or not’.

Of course, walking with a stick or waking up to numb limbs doesn’t tend to feature heavily in our good-news scenarios but the fact that a large number of us appear to live more fulfilling lives puts it all into perspective. Yet it can take a while to get used to.

Like me. On Monday, we had our book club Christmas party. Readers, I had to take my stick.

Awkward. I had unwittingly marked myself as ‘other’, even though I knew I could grasp the tables and chairs and stagger my way round the room without it, the stick was a solace and it helped. I am proud and didn’t want to look like a toddler taking their first steps or face the inevitable whispers of, ‘has she? Too much red? She always says she dances on tables when she drinks red’.

Yet the stick also rendered me speechless and quiet. And anyone who knows me will know that’s pretty unusual.

Anyway, Monday taught me a lesson. I am still the same person, with or without a stick for balance. Perhaps I should fashion my own one from driftwood, imbuing it with magical powers, terrifying the neighbourhood children. I already have the black cat, so why not?

What I’m trying to say is, what does it look like like to have MS? For me, and people like me? The few memories of my father are distorted and shaped by familial prompting. All I remember is that in his final days, he lost his power of speech and moved from his wheelchair to his bed. And he looks odd in the few photographs I have, whereas I appear to be happily sucking my thumb on the grass in the backyard.

So, what am I? Yup, I got his eyes, his chin, his dismissive sense of humour. And for good measure, the MS.

Who are you with MS?

Are you still denying its existence or have you accepted it and understood that you are not MS. It does not have you, unless you allow it.

For those of you with more advanced forms than I, I apologise. The aim of this post is to inspire us who are still at the beginning; if we give up now, who’s going to care?

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