Tag Archives: The Teenager

Stand Up, Get Knocked Back Down Again – And Repeat

knockedI had an ‘interesting’ taxi ride yesterday afternoon.

The Boss has picked me up for work every morning since early this year, when my symptoms made it too difficult to drive.

Almost a year on, it’s become the norm, which takes a huge amount of pressure off me, yet another adaptation that has slid into my life almost unnoticed.

After a bit of training, he makes sure there’s a fresh coffee in my little cup-holder, and if I’m lucky, a croissant or bacon sarnie.

Anyway, yesterday the job ran over and The Boss arranged a taxi to get me home which I fell into gratefully.

Until the conversation, which went something like this:

‘Been busy today?’

‘Yeah, lots of calls, but most of them for so-called disabled people, I drive them to their assessments? What a joke. Malingerers, the lot of ’em.’

‘Well, some of us do work? Like me?’

‘Yeah, but most of them, they look … normal? Nothing wrong with ’em. And there’s me, working 60-70 hours a week, slogging my guts out, to fund them? I mean, there’s something seriously wrong with the system?’

‘Yeah, but I work?’

‘Not the point, is it? Honestly, you should see them, prancing around, then well upset when they don’t get their benefits. Benefits? Free-loaders, the lot of ’em. And there’s me …’

This went on for fourteen miles. Nothing I said would convince him to see the other side of the debate. He’d read his newspapers and was ‘well-informed’.

It wasn’t only disabled people; students were another pet-hate; ‘four of ’em in my taxi – a quid each to go to town?? I mean, they gotta get used to real life, but they’re living it up like kings at university.’

His views to one side, this was a chilling reminder of the wider view of what people like us have to put up with, especially in light of being reassessed for PIP. Not only do we encounter the DWP rock-face, we also face a monumental societal challenge.

You would think, with such a serious illness as MS, we were somehow ‘protected’ from this bile. A verifiable, quantifiable, certifiable illness? Not a chance. We were all one and the same.

When I got back home, I grabbed the cat and went straight to bed. It’s the best place to be right now and I seem to be going earlier and earlier. It’s the only place I can be at peace.

I’ve been knocked down many times – most significantly in 2011 when MS blasted onto the scene, then the diagnosis in 2012 and my subsequent sacking. You get knocked down. You stand up. You take another blow. Partner’s left? Blam. Income dropped? Blam. You get knocked down. You stagger up again.

How many times can you get knocked down? Just when I think I have created a world that works for me, it’s destroyed. And this happens over and over again.

MS is bad enough, but the DWP should really have their own disease/illness classification – ‘DWPitis’ – : symptoms include:

  • Hopelessness
  • Fear of the future
  • Anxiety/panic attacks
  • Destitution
  • Increase in existing illness symptoms
  • All of the above x 10

And just when I think things can’t get any worse, The Teenager texted me yesterday to inform me he’s applied to be on ‘Love Island’…

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We Are Five

candlesMy little blog turned five last month.

Five years old!

The Teenager had just celebrated his 13th birthday, I was a lot skinnier and life was pretty horrendous.

Full of frustration and anger at the constant bullying I was experiencing in work since my MS diagnosis a couple of months earlier, I needed an outlet.

I had been chatting through email with a wonderful author, M. J. Hyland (her books are brilliant – I totally recommend ‘How The Light Gets In‘), who herself has MS, and she encouraged me to start a blog. And so, I did.

Five years later, The Teenager is throwing himself into University life, I am mourning a wardrobe full of clothes I don’t fit (thanks to Grave’s disease) and life is pretty wonderful.

Looking back over the last five years, it’s been a twisty-turny path. For at least two years, I was in a dark place; coming to terms with such a diagnosis was complicated enough, but coping with vicious bullying in work and an extreme course of MS treatment at the same time almost pushed me over the edge.

And then I was sacked from my job for ‘being a liability’ due to MS and with the ensuing legal battle  life wasn’t fun for me, or, more importantly, for The Teenager. Something had to change, and luckily it did: this blog.

It’s no exaggeration to say that it pulled me out through the murky swamp I had found myself in. After a shaky, tentative start, I began to receive comments on my posts. There were other people out there, just like me! You guys. I talked about everything. And you sent me your own experiences and your wisdom. We mulled over problems, worked things out and I had the benefit of many different viewpoints, not just my own.

Life now is a world away from five years ago. The Teenager is a happy, confidant, go-getting young man and I could not be prouder of him. He tackled all the challenges he faced head on. I’ve completed a Master’s and gained a Distinction. I enjoy my new job and it’s flexible, working around the MS quirks.

I often wonder where I would be today, had I not had this diagnosis. Quite possibly, unfulfilled, still dreaming about writing, still wondering when my real life would start.

Now I know there will be no knight in shining armour, I have gained an inner strength. Now I know that life can be utterly random, I go with the flow.

But above all, now I know there are people like you out there who take the time to send comments, opening my eyes and expanding my vision of the world, I know me and The Teenager will be ok.

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Don’t Believe The Hype

lifeI was wandering around the supermarket yesterday and accidentally went down the Baby aisle.

With the last 18 years of bringing up The Teenager fresh in my mind since taking him to Uni, I felt a bit of a pang.

I gazed upon the rows of feeding cups, teeny tiny outfits, creams, ointments and the inevitable ‘How-To’ books.

Someone once said to me, when I was heavily pregnant and reaching for my second ice cream sundae, that babies don’t come with an instruction manual; probably the best piece of advice I’ve ever had.

In a way, having a child and being diagnosed with MS are weirdly similar, and having been through both (and survived to tell the tale), I can quite confidently say, ‘MS does not come with an instruction manual.’

In the beginning, I thought it did. Similar to being pregnant, when I was diagnosed, I was bombarded with stories (both good and bad), told to do this, told to do that, take this supplement, eat this raw bark by the light of a full moon. I read endless articles online, mostly grim, and I envisaged a similar future. The few positive stories involved wildly expensive treatment and/or jumping out of a plane for charity.

When I had The Teenager, I constantly referenced books, other people, forums, random strangers – ‘why won’t my baby stop crying?’ Whilst the deluge of advice was welcomed, it wasn’t helpful. Just like MS, every baby is unique. What worked for me (draping my baby over my arm and rocking him in tune to The Verve, a completely accidental occurrence), didn’t work for others. We found our own groove through trial and error.

MS has a virtual cornucopia of symptoms and none of us are the same, just like those tiny week-old humans. You can read as much advice as you can, you can pin your hopes on a miracle cure, just like I did to cure The Teenager’s colic. Nothing worked until I found my own solution to our own unique problem.

Being diagnosed is about finding out what works for you. Your symptoms will nudge your life in different ways, to cope with various symptoms, be it fatigue, cog fog, mobility and all the rest. When you seek advice, take what you need from it and discard the rest. It’s your life and your life with MS is not the same as anyone else’s.

I’ve found my MS groove, just as I found my Baby groove. I don’t drape myself over anyone’s arm, but I’ve re-calibrated certain aspects of my life which work for me, but which I would never foist upon anyone else.

I know when to sleep, when to do paperwork, when to shop, when to go to work. I know when to be extra careful going up or down stairs and I now know how to cope with dark days. All this works for me, but probably won’t for you.

Examine your MS and find out how to play it. It’ll take time, trial and error and blind alleys.

But you will find it.

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Living Alone, With A Cat …

CatThe house is eerily quiet, although the fan in the bathroom is humming in the background, trying to cope with The Teenager’s last, long epic shower this morning.

Spookily quiet, after 18 years of noise, from toy drums and rugby studs on the wooden floor to blasting music on the iPhone.

Hmm. So this is the Empty Nest.

All I can hear is the pesky cat crunching her biscuits.

A couple of hours ago, I took The Teenager and five huge blue Ikea bags to his new flat, at Uni.

A weirdly quiet journey as The Teenager was asleep for most of it with a heavy head cold, only waking with a start when Kasabian came on the radio (‘saw them live’), before nodding off again.

I nudged him awake as we navigated the campus, where I was handed a huge neon sign to put on the dashboard before we drove in circles, guided by people in neon coats. Maybe they reuse all the stuff for the first Fresher’s Party? More neon people greeted us when we finally found his block and strapping students (in neon) helped take his bags up to his flat.

The room was great, and I bustled around, sorting out his stuff (as previously agreed in the ‘What Mums Can and Cannot Do On Drop-Off Day). Towels, shower gel, plates. I held a box up, ‘these (dramatic pause) are washing tablets.’

As it was, he was so tired, all he asked for was his bed to be made up as he wanted to sleep; seems he was totally embracing the student life, right from the get-go. Impressive. More impressive was the huge sign outside the courtyard of blocks – ‘Pizza Delivery Point’.

So I tucked him up in bed, admired the view, and told him I would always be there for him, but would never, ever turn up unannounced. He smiled as best he could and I left him, with a card containing an Amazon voucher and all my love.

The drive home was weird. Getting in the front door was weird. Walking in to the silence was weird. I wandered around the house, clocking his ransacked bedroom, just his prom outfit and a few pairs of shorts left hanging in his wardrobe.

I opened the freezer and sighed when I saw the bags of his favourite chicken. In the fridge, there’s half a carton of his milk left. It all feels … weird.

But yet, taking him to his new place today, feeling the buzz around the campus and watching him take his first step to adult independence, I was bursting with pride. As my mum said on the phone when I got back, ‘it’s not been the easiest of journeys, but he did it. You did it. You must be so, so pleased.’ And she wasn’t talking about the M4 roadworks.

So as The Teenager begins a new phase in his life, so must I.

This is where the adventure starts …

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One Child, Multiple Sclerosis …

single parentFor me, the worst feeling in the world isn’t a relapse or falling face-down on the pavement.

It’s telling your child you have MS.

And not only that, telling him it’s just me, the one with MS, who will be guiding him through his teenager years.

A bit like saying, ‘yes dear, I have your rugby kit, but I’ve trampled on it and chucked it on the club-house roof. Go fetch.’

Looking back over the last six years, we muddled through; I made numerous mistakes, I mishandled situations (kids prefer the truth), and I spent a lot of time pretending to be well. But you do, don’t you?

How do you explain the realities of life with MS at the same time as shielding them from the realities of life with MS? As the only parent? If you’re the 100%, there’s no room to carve out any space to get better, to regenerate. The Teenager saw me at my very worst and my very best.

It saddens me. If there had been more support in place, I could  have recuperated from treatment, gone through the weird and wonderful journey that is a 5-day course of steroids on my own and come out the other end, ready to be the parent I always wanted to be.

Up until MS happened, I was one of those annoying mums who scanned the free mags, looking for trips to bird sanctuaries, animal handling events, pumpkin carving evenings and all the rest of it. We made shields in Cardiff Castle, clay faces in pottery cafes, constructed buildings from cardboard, complete with messy painting and Lego figures.

Life was getting better. I had a University course in mind which would ultimately increase my earnings. I went for the interview, receiving positive feedback.  A month before MS. My child-emergency-friendly, low-paid job, which fitted in around his school hours turned into a nightmare of stealthy bullying, step by step. After almost ten years in a similar low-paid, child-friendly job, this was devastating.

And again, being the 100% parent only increased the amount The Teenager saw. There was no hiding the realities of the situation but I cried when he was in bed. I held it together until then and everything was normal. Ish. But, of course, it would never be normal again.

The upside? Of course there’s an upside. The Teenager has been exposed to human frailty at it’s worst, and got through it. Sure, this has not been the childhood I wished for him, and I will always regret that. Yet, he is thriving.

For him, I moved from inner-London chaos to lush, green North Cardiff. He had an enviable childhood in that respect – we live on a green field and he and his friends explored far and wide on their bikes when they were younger. Does it make up for being a wonky parent? Probably not.

As he heads of to University, I know he will find his niche. Have I done enough to prepare him. Perhaps not. Will that be half the fun?

Maybe.

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