Tag Archives: The Teenager

Apr 02 2018
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Emotions

A Date With Fate

People often say, if you think too hard about the best time to have a child, you never will.

It’s the same with car crashes and disabilities.

If you’d asked my 23-year-old self if I had the time and resilience to be involved in a near-fatal car accident, necessitating six months off work, I’d have laughed. But it happened.

Forward 14 years and if you’d asked me on Friday 24th June 2011 whether – as a divorced mother of an 11 year old – I was ready for a serious, degenerative illness to suddenly pop up and change my life forever, I’d have laughed my head off. I had far too much to do, how could I possibly fit it in?

Yet it happened – I went to bed that evening as usual and woke up in a completely different body, one I barely recognised.

The surprise element in these three scenarios can be overwhelming for people like me, who think they knew where they’re going.

Just like that, you don’t.

I often think back to that fateful evening and wonder if I truly appreciated my life, as it was, when I closed my book, fluffed up my pillow and turned out the light. I don’t think I did.

Sure, I had a plan, and it was a good one – possibilities were opening up as The Teenager entered high school and the tethers of childcare were loosening. I would also lose that extra weight, learn how to apply eyeliner and rustle up a mean Martini.

MS hit and I went under. For two years. It was almost as if I refused to believe that it had actually happened. I was grieving for what could have been and what should have been. It was all so … unfair.

It’s only now I realise that it wasn’t so much the MS that rocked my life (**** happens?), but my inability to recognise that life had changed and there was absolutely nothing I could do about it. A bit like the car crash.

Almost seven years on from that day, I am serene, calm and accepting.

Nah, not really.

But – I’m much more flexible in my approach to life, unlike my body, which is often rigid, wracked with weird vibrations and does the strangest things.

So many awful things have happened since MS but none now have the power to shock me quite as much. When life events drop down the shock-scale, it’s rather nice. When MS happens, what can be worse?

Oh, wait, I forgot about The Department of Work and Pensions …

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Jan 27 2018
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The Teenager

Look Back In Anger?

tattooThe Teenager had a tattoo on his 18th birthday, and he invited me along.

It felt weird to hold his hand (his grip is pretty strong), and get him through it, just as the midwife had held my hand almost exactly 18 years previously.

He’d thought long and hard and we’d held discussions for well over a year beforehand. Did he know it was a lifelong commitment? The pain? But he was adamant, and I eventually backed him completely.

He wanted his friend’s name and date of birth. And death; he died aged 17 of cancer and The Teenager wanted to symbolically take him along on all his adventures that his friend hadn’t lived to see.

Fast-forward five months and The Teenager (plus a huge bag of laundry) landed back home again for a second tattoo, on the other arm. Same discussions, same concerned parent. But he’d booked an appointment, paid a deposit and came home wrapped in cling film.

The result was a tribute to the grandfather he never knew and my dad, who died aged 35 from complications arising from his MS. I’m still pretty stunned.

I remember being so angry, back when I was first diagnosed, that I would never have the chance to talk to him, to share our experiences. I felt wholly, absolutely, alone. I was four when he died, so I don’t remember much about him, just snapshots, which may or not be constructed through other people’s observations.

Above all, I feel incredibly sad that in less than a generation, things could have been so different for him. I also feel moved beyond words that The Teenager has created a permanent memorial. He had the words ‘Live Forever’ tattooed underneath, a fitting tribute to a man who was apparently so full of life, and a nod to The Teenager’s favourite band.

Before I veer into maudlin territory, I am full of admiration for The Teenager’s determination to rise above the experience of having a mum with MS. He’s been through hell, all through his secondary school education, yet he has come out fighting and is passionate about justice and caring for others.

In short, I am proud.

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Jan 20 2018
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Emotions

Not Private, Not Confidential

be honestI’ve had some lovely emails recently, thanking me for highlighting both the gruelling PIP process and the issue of poverty amongst disabled people, like myself.

It hasn’t been easy being so open, but my blog has always aimed to show the reality, good and bad, of living with MS.

The parallel, Non-MS Me (the one I often think about) would be living a very different life; I’d probably still have the usual money worries like anyone else, just not the grinding, heart-stopping ones I have at the moment.

It’s an easy path to trace – having to reduce working hours due to MS, to being sacked for having MS, to taking on a less-qualified job but one which allows a great deal of space to deal with MS. And then, that’s it – I doubt I’ll ever find another job which could give me the freedom I have right now, a huge benefit of working with my best friend who’s been through the whole MS process with me.

What’s not so easy to trace is the impact of everything else MS involves – the emotional upheaval, parenting with MS, the demands of invasive and intensive treatment, the side-effects and of course the ongoing symptoms. Thinking about it, it’s a wonder we came through it at all.

So, financially, MS can be as damaging to your finances as to your health and it can quickly become a downward spiral: MS symptoms may lead to social isolation, not helped by a lack of finances, which leads to stress, which leads to more MS symptoms, which leads to more social isolation. And then your benefits get stopped and it’s a whole different, terrifying ball-game.

I didn’t grow up poor and I didn’t expect to lead some of the best years of my life in poverty. But it’s happened and I have to deal with it, along with the 14 million others in the UK (1 in 5) who live in poverty today, an increase of 700,000 since 2013. In the UK, the fifth-richest economy in the world.

My main aim, as always, is The Teenager. I have raised him to appreciate money but not to be too hung up on it – to invest in experiences, not material goods. To enjoy sourcing a bargain and to learn how to draw up a budget at University. Which is probably why he arrived back home at Christmas with three loads of laundry (£6 a load at Uni, free at home) – I only have myself to blame.

Poverty is not shameful (a fact I had to get over, before ‘going public’) – it is the government who should feel shame and the employers who dismiss us who should feel shame.

We need to keep putting pressure on the government, keep forcing more PIP u-turns and feel … outrage?

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Dec 25 2017
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Daily Life

Sketching Out The Details

ahaLife is so hazy at the moment, everything put on hold until I hear from the DWP and their assassins assessors.

It’s a weird feeling; a bit like an MS relapse, when nothing is real and everything hurts.

PIP has taken over my life, as has peering into tiny details I normally prefer to gloss over. Yep, sounds just like a relapse, a DWP-sanctioned relapse?

Anyway, life continues for now; work, home, rest, sleep, work, home, rest, sleep. It doesn’t usually leave much room for any form of excitement. Until today, Christmas Day.

I woke up around 13 minutes before The Teenager, at 6.45, made a cup of coffee and looked around my house, as if for the last time.

I do this every day since the PIP forms, but today had a special poignancy. I’d ordered a home-cooked Christmas Lunch for Two, bought a big box of crackers and had dug out decorations and strings of fairy lights. It wasn’t the advert-perfect Christmas, but it worked. I think.

In amongst a wonderful day spent with family and friends, I received really thoughtful gifts which almost made me believe there could be a future beyond the DWP’s decision:

Beauty: this is always amazing as I normally feel so fat ‘n’ frumpy, having packed on the weight since Grave’s. My mum, brother and younger sister all gave me gorgeous gifts. I just have to embrace my size …

Practical: The Teenager gave me an Amazon voucher to buy books with. Perfect gift, my Wish List is long. My friend gave me an Amazon Echo, to train it to remind me to take my meds (he knows what it’s like when I don’t) and get up to speed with the news.

Inspirational: I was given two beautiful sketch pads and a pack of pencils. Yep, I’ve joined a Drawing Class in January.

I have no idea why, a totally impulse decision. I haven’t drawn anything since A Level Art; I think it’s a case of the orchestra playing on when the Titanic’s going down?

I want to believe there is still a normal life after this. Probably smaller, narrower and more careful than before, but still, some kind of life?

In the meantime, we are teaching Alexa the Amazon Echo to miaow and answer utterly random questions. She’s unfailingly polite; I asked her what she thought of the DWP and she said, ‘I don’t have an opinion on that.‘

Unlike me …

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Dec 20 2017
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The Teenager

Wise Beyond His Years …

owlThe Teenager is back for the holidays and my heart is bursting with pride.

It seems I sent a child off to University in September and he’s come back a man.

Sure, he’s stripped the fridge, freezer and every cupboard bare in a never-ending quest for food. He brought back three loads of dirty laundry, and he’s spending an inordinate amount of time in bed.

But in amongst filling and emptying the washing machine, we’ve had some great chats, in particular one about regrets. He explained he had none at all, despite everything, including growing up with a mum with a serious illness. He felt it only added to his compassion and understanding of what it is to be human.

Blimey. We mulled over some other points, and nope, he has no regrets about anything and he’s enjoyed finding out more about himself these last three months.

What a brilliant attitude to have at such a young age. Isn’t it weird when we find ourselves learning from our children? I thought hard about what he said, and I really do think from this point onwards, I may just adopt this way of thinking. Given the absolute hell of the filling out the PIP form, raking over every single aspect of my life and also reflecting back on this MS journey and more importantly, the journey that me and The Teenager have had together for the last 18 years, it is now time to look forward.

His excitement for the future is infectious. PIP is sent, there’s nothing else to be done apart from prepare for a fight. But that can wait for now. It is more important for me to count my blessings and concentrate on everything that is good in my life, and there are many things. The Teenager, you guys, my friends and so much more.

On that note, I’m off to stock up the freezer again …

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