Tag Archives: university

Always On Call …

The Teenager has always been fiercely independent – give him a phone charger and he’ll travel anywhere, talk to anyone and generally find his own way back home.

He’s settled into University life as if born to it and has found his feet exceptionally quickly.

So I’m always a little thrown by random texts I get from him, at the oddest times.

Take Friday for example. I’d mentioned to him I’d be at an MS Council meeting 60 miles away and staying overnight. There’s a get-together in the hotel in the evening to meet other people affected by MS in the surrounding area and it’s great to see new faces.

I’d settled down on a squishy sofa and was having a brilliant discussion with two lovely people, and , well, whaddaya know – up pops a text at 7.30 – ‘Should I get bleach to clean my toilet?

Umm. Ok. I replied, he indeed should and use it a couple of times a week. I then rejoined the conversation and picked up the thread.

Another text pinged – ‘How do you do it?’

I texted back about squirting it under the rim and making sure he had a loo brush. He did, so that’s good. I should know, I bought it for him along with a million other items on his IKEA Student Survival Shopping List, an event I’m still recovering from.

And that was that. Until the next time.

What the toilet bleach conversation showed me is that you just never, ever, ever stop being an always-available parent. Which is kind of lovely. It’s nice to help fill in the gaps he’s finding as he learns what it is to be an adult, bleach and all.

I like the fact he knows he’ll get a quick answer from me, even if it’s an ‘I don’t know’, as in one of his other texts recently, ‘Have you heard of the band Royal Blood?’ Nope. Or when he just wants to say something, such as, ‘I made chicken katsu curry. From scratch.’ Proud.

When it comes to priorities in my life, he will always come first, no matter what MS throws at me. He knows that even if I’m sprawled on the sofa, virtually unable to move for fatigue, I will make sure my phone is by my side.

Looking back, I can’t say he had it easy with MS. It hit just as he entered high school and we went through some pretty dark times, but we did it. First and foremost, MS was my battle, and I wanted to protect him from the worst of it, as is right. His childhood and growing up feeling secure and loved were top of the list.

So, I love his random texts, his song suggestions, his little remarks about how his latest essay is going. I’m involved in his life, but not overly so and that’s the way it should be.

P.S. Has anyone heard of Royal Blood?

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I Bet I Don’t …

A fellow Master’s student threw a massive spanner in the works of my so-called Life last week.

She emailed me a link to Student Finance; apparently from September, they will be funding PhD’s through loans, in the same way as undergraduates.

I’d long since put that dream to bed, packing it away with all the other dreams that MS had trampled all over – running a half-marathon, staying up past midnight, opening a packet of crisps, having a proper career,or even a partner.

The Master’s was a challenge I set myself and it was horrific at times. The self-doubt along with the regular cog fog, fatigue and inability to string a coherent thought together morphed into a mountain of despair.

However, the Student Disability Team at my University were magnificent and I wouldn’t have graduated without their ongoing support. The pride I felt on graduation day swept away all the struggles, even if my cap kept slipping and I panicked about foot drop.

And that’s the thing. It was a challenge; difficult, insurmountable at times.

And now, there is no real challenge in my life. I have a great job but it will never be a career – I’ve traded that dream for a job that is flexible, understanding and totally built around MS.

As for a partner. Lol. I’m nowhere near ready for that. Having been single since MS first began (almost seven years ago), I’m resigned to meals-for-one and over-indulging the cat.

Don’t get me wrong, I’ve long since moved on from my epic pity-party-for-one. I count my blessings, not least the incredible care and treatment I have had for the MS.

Yet, there is something … missing, something I could never, ever contemplate but is within tantalising reach. I’m not an academic and it was noted during my Master’s that I’m not an academic writer, so that’s a challenge in itself. But I have a germ of an idea that just won’t go away.

Part of me wants to give it a shot. Part of me wants to keep on binge-watching Netflix, cutting open crisp packets with my safety scissors and peering through the window, watching the world go by without me. It’s safe and it’s comfortable.

So, I’m putting this post out there, to you guys, not to convince me either way, but let’s chew this over. Six years part-time while still working is a huge commitment. Am I running away from dating? Or am I embracing a worthwhile challenge that will stretch me to the absolute limit?

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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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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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