Tag Archives: The Teenager

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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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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The Teenager Returns …

backA flurry of texts, a bus journey cancelled due to an international rugby match, a friend’s car pressed into service over the Severn Bridge:

The Teenager arrived home from University for a gathering of sixth form friends on Saturday night.

And suddenly, there he was, towering in our little cottage doorway.

The Teenager had returned, albeit for a quick overnight stay. We hugged, or rather, I did, The Teenager a bit embarrassed. And tired. And hungry.

Much the same as when he was much younger, his first word was ‘food!’ He raided the fridge (‘Cheesy Strings!), the freezer (pizza!), the cupboards (bars and crisps!!), as intent as a locust. Finally sated, we chatted. A very fast, very convoluted catch up before he jumped up, ‘Shower! OMG, a dry towel! Shampoo! OMG, Loo roll!’

Many wet towels later, accompanied by blasting music from his phone, he popped back downstairs to get to know our cat again. And eat more pizza and protein bars. He told me that one of his best friends also has a mum with MS and I’m overwhelmed with happiness that they can support each other.

‘Mum, it’s weird, but it’s just weird, like very weird being back in my bedroom, very weird. You know?’

‘Yep, must be … strange?’

‘Yeah!

He wolfed down his pizza, slurped the rest of his drink and jumped up again. Before I knew it, he was dressed to impress and ready to leave.

The next morning, I woke up to a stack of bar wrappers, empty cans, wet towels and the fan in the bathroom still chugging away. The TV was frozen on ‘Match Of The Day’. I got on with paperwork, one eye on the clock for his return journey to Bristol.

At 3pm, I knocked his door.

‘Muuuuuum. Hiya! I’m fine, but leave me … it’s my double bed. It’s amaaaaazing.’ He made snow-angels underneath his American flag duvet, but I nagged him (how I’ve missed it!), and he showered, changed and was ready to go back to Uni.

I drove him in to town, dropped him at his bus stop and watched in my rear view mirror as he got on to the coach. He’s going to be ok.

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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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