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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Say Cheese, Please?

say cheeseYou’d think, wouldn’t you, that what with teenagers uploading photos of everything they do, it would be fairly simple to ask my own Teenager to have his photo taken?

Just one teeny problem with this; the photo would be with me.

His Mother.

Apparently, this is so far beyond the realms of excruciatingly embarrassing as to be virtually unimaginable.

I brought up the subject gently, i.e. I stood guard by the fridge as he crashed through the door after school, shedding bag, blazer and tie in a path of devastation towards the kitchen.

‘Erm, you know how I’m turning the blog into a book?’

‘Huh’? Muuuuuuuuum, lemme open the fridge. Starvin’.

‘Well, you’re in the blog quite a lot and I think it would be lovely if we had a photo of both of us? Oi, one bagel, not three.’

He glanced up from the toaster with a look of absolute horror on his face. I guessed this wasn’t going to plan.

‘I’ve got a few ideas….’

‘No way. Noooooooo way. Where’s the butter?’

‘Here. Go on (wheedling voice), I’m dedicating the book to you. Got a few ideas. And I don’t even mind if you pull a silly face behind my back, like you normally do?’

‘Lame. Way lame.’

‘Ok, how about we stand back to back?’

‘Lame -er.’

I dropped it. Christmas is just round the corner, maybe we could get someone to take a sneaky photo or ten?

This could quite possibly be the biggest challenge of the entire book project. Not the editing down from several hundred pages of blog posts. Not choosing which font to use or writing an introduction. Or writing a blurb about me (eek) – first or third person?

No, it will be coercing The Teenager into a photograph in less than three takes.

And there was me thinking I could pose with a book, pen (which is strange as I use a computer to write the blog posts, natch) and a slightly melancholy, whimsical look on my face. Perhaps at an angle, with arty shadows. I could even learn how to wear a beret with sophistication and elegance.

Maybe we could have separate photos?

Or maybe I should just hire a cartoonist to sketch us. Could be simpler?

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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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What’s MS Like?

movingHmm. As they say, every person with MS has a unique set of symptoms, so no two are alike.

However, I get asked a lot, ‘what does it feel like to have MS?’.

Quite possibly the hardest question ever.

Imagine this: you wake up every morning, flex your hands, feet, arms, before stumbling out of bed.

What works?  What doesn’t? You find your phone. And drop it. Curse. Paw the carpet to find phone then trip over shoes, falling into the landing and ending up face down in the laundry basket.

Sway downstairs, knocking into the bannister. Weave your way to the kitchen. Coffee. Think about a shower. The pitfalls. Take a deep breath. Teenager has used your expensive shampoo. Again,

Consider nodding off at kitchen table. Sort lunch money, blazer, Teenage Tantrums, lost paperwork. Head to work.

Fall asleep in van. Yawn a lot. Mix up numbers, measurements, tiles. Find a quiet corner.

Back home, dread cooking a meal and dream about a private chef. Make meal, clean up, ignore leg pain, can’t ignore hands, drop everything. Clean kitchen floor, badly.

Essentially, MS is a surprise. Who knows what I’ll wake up to? It could be tripping, falling, stumbling, umming or ahhhing. My brain seems unwilling to move on from my first recorded relapse, the one that affected my speech. I mean, me? It’s almost an insult. Especially when I try to reply to the good-natured building site banter. ‘Oh, yeah, give us a minute, yeah, and I’ll think of somefink witty to say’. Too late.

MS is an oppressive bully who just won’t give up. MS will push you around, kick your feet from under you, prod you, squish your memory and generally make your normal day-to-day life a living nightmare. It will make you incapable of paying by cash (my nightmare). Coins scatter everywhere. It will make you nervous at checkouts (um, can you slow down, just a little bit?).

MS is a malevolent shadow, mimicking your actions with a macabre comic touch. Anything you do, MS will magnify. A slight stumble on a doorstep will become a massive trip through your own front door. A twitch will become an embarrassing tic you can’t get rid of. You will fall out of cars, trip into stores and scan the pavements for cracks. And in amongst it all, there will be the Clinical Neurological Fatigue (TM).

And that’s the next problem. Try explaining that to people. ‘Yup, I have to sleep a lot’.

‘Oh, me too. I love sleeping. You’re so lucky!’

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What Do I Do Now?

mazeI had an appointment with my wonderful MS nurse yesterday. The situation as it stands is: I was diagnosed with rapidly-evolving MS and have had two courses of Alemtuzumab, just before NICE licensed it for MS patients.

They recommend only two courses, whereas there have been people who have had a third or fourth course before NICE. Hmm. Can I have a third?

Please? Pretty please? I won’t complain about the hospital food?

Well….. Oh. Can I take anything else? I had a relapse in February?

Well, there is Tecfidera.

Yay!

But this Trust won’t give you it. Oh. Any new problems? The nerve  and muscle pain in my legs has increased terribly. Every single evening, I’m in agony. Thank heavens for my automatic car, lol (this is where, for some bizarre reason, I imitate driving a car).

Well, there is Sativex, licensed for use in Wales.

Yay!

But this Trust won’t give you it.

Oh. You can see where I’m going with this.

I asked about Tysabri. No good, as I’m now – thanks to Alemtuzumab – not deemed as having rapidly-evolving MS. Vicious circle? So what are my options? At the moment, purely symptomatic. I don’t qualify for any disease modifying treatments.

My health is deteriorating. I know it shouldn’t, given the Alemtuzumab, but I also shouldn’t have had a relapse seven months after my last treatment. Don’t get me wrong, without Alemtuzumab, who knows where I would be now, and I will be forever indebted.

I pleaded my case: it’s only thanks to this medication that I am still working, still taking cheek from The Teenager, have enrolled in further education. And still  manage to push the vacuum round every now and again.

No go. I left, by way of the WHS outlet, where I bought a trashy magazine to cheer myself up. Got to the car park and realised I  had left my card in the payment machine in WHS. Schlep back, cry a little when talking to WHS member of staff who finds my card. She says she sees it all the time. I buy a chewy healthy bar and leave.

Get back home, letting it all sink in. I had explained to my lovely MS nurse that I felt I was up against an egg-timer and  my time was running out. Could I see The Teenager through his horrible Nirvana stage and get him into uni? Would he ever get his hair cut? Would I complete my Masters? Without my beloved Amantadine, which combated my fatigue, I felt as if I was back to square one. Like an evil Monopoly game. Do Not Pass Go. Go Straight To Jail.

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