Tag Archives: multiple sclerosis

Jan 02 2017
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The Teenager

Is The Hurt Worth It?

wallThe Teenager found out that his dad has spent the New Year in America.

Today. Two days later.

I only heard this from The Teenager through texts. His dad has yet to call me to explain his change in circumstances – which, if social media is to believed, goes back months and may involve a permanent move.

It takes two parents to raise a child, no matter what the circumstances. Right?

Our house is furnished entirely from Gumtree bargains and cast-offs. The goodwill of friends have enabled me to paint my kitchen and given me my bed. And The Teenager’s.

For the last 17 years, planning my working day has taken on Herculean proportions; lists, more lists and bagfuls of stuff. Even working in a low-paid, dead-end job meant endless mornings of rousing The Teenager at 5.30 am and taking him to my mum’s house, handing over his school uniform and a sleepy child.

Working with a child meant low paid jobs and always being available for the latest crisis – nits, bullying, Parents Evening as the perennial lone parent. This is precisely why I took on low paid work. There was no alternative.

Meanwhile, The Teenager’s father, unencumbered with childcare, or indeed raising a child, rose swiftly through his chosen profession. The Teenager’s room at his house in London wasn’t his room, it was a spare room, his toys pushed away under the bed in plastic boxes between visits.

And now, while I have been renting a cottage for 12 years (after spending the first four years of The Teenager’s life in penury at my mother’s house) and hoping for continuity for The Teenager, I learn that not only does his father own a flat in London, and has built a house in the Carribean, he has also made plans to move to America.

I used to ignore the blinding obvious. We both stood up in court – me having fled with our son, aged 10 months. I left the house. Big mistake. He had a brilliant barrister. But it was only later I found out just how big a mistake this was.

What can I say to The Teenager? Simply, the truth, no matter how much money, no matter which exotic locations, the absolute joy of bringing him up will always usurp that. I am blessed. Me and The Teenager have been through turbulent times, but we have always got through them with love and support.

For me, that is priceless and beyond compare. I remember telling The Teenager’s father I had been diagnosed with MS, four years ago. He swore he would help out more, be there through the hard Campath times.

You guessed it, it didn’t happen, if anything, contact has became even more sporadic, until it’s petered out to nothing.

Despite it all. The upset. The rage. My focus is upon The Teenager.

It has always been and always will be.

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Dec 23 2016
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Emotions

A Yuletide Pity Party

grinchI worked yesterday, although I’m sure The Boss wished I hadn’t.

I grinched and grumbled the whole day, threw an almighty strop over a designer radiator and sulked in the van while The Boss gamely measured up our new, muddy building site.

When I got home (after flouncing out the van and nearly breaking an ankle in the process), I collapsed on the sofa, before promptly falling asleep.

Nerve pain, usually kept under semi-strict control with medication, had sneaked past it and was having festive fun dancing with clogs on all over my body. Hard to describe and difficult to ignore, my body was inflamed with the darned pain. After I woke up, I lay still, wishing beyond hope that it would go away.

My stomach grumbled but I couldn’t get up. I passed a few hours like this, intermittently bursting into tears whenever a Christmas charity advert came on TV. The Teenager popped down a couple of times to ferret through the fridge and sneak a few mouthfuls of squirty cream (he denies it, but I know the sound).

Eventually I ate two mince pies without squirty cream, cried a little more and gave the cat some Dreamies before I went to bed. I slept a straight ten hours, virtually unheard of as late as I’ve also been plagued by the scariest, most bizarre nightmares. Anyway, I got up, fell on to the sofa and lay there pitying myself a bit more and watched the news about Storm Barbara (Really? Do you know how many jokes I’ve had?).

So I sulked about the storm’s name and the nerve pain cranking up again. I sulked about there being nothing on TV. I sulked when I found out The Teenager had demolished the rest of the mince pies. And then, A Christmas Miracle.

The Boss texted me. He was going to Ikea and would I like to join him? Well, I could just as easily sulk in Ikea as at home – and have more reason to – so I went. Best. Cure. Ever.

It was blissfully quiet, I got to stock up on candles and had a leisurely coffee while watching harassed parents attempt to control their over-excited toddlers. Been there, done that. Nerve pain? Still thrumming away, still painful, but with the company of a good friend and a change of scenery, just about manageable.

This lull allowed me to reflect on how lucky I am to have you guys to offload to, to grumble to and to feel part of a larger group of good mates. I love your comments and your emails and who knows what my fifth year of blogging will bring?

p.s. If I hear, ‘Barbara’s going to be very windy’ one more time, I’ll cry again …

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Dec 16 2016
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Work and Studying

Mastering The Enemy …

mastersYou know when you can’t string a sentence together with MS and your brain goes foggy?

Yup? What better time to start a Master’s degree (insert smiley face here).

That’s the way I was thinking two years ago (MS does funny things to your brain).

Back then, MS was The Enemy Incarnate, as I’ve mentioned in previous posts, and had to be defeated at all costs. I had been writing random blog posts for a while (still do, lol) and wondered whether I could write anything else. So, I looked around, called a few universities and signed up for a Master’s.

It was then that sheer terror set in. On many levels:

  • MS – brain fog, memory issues, parking …
  • Age – how would it be to go back to Uni when I was the old enough to tell the students off?
  • Style – or lack thereof. How to pretend I fitted in. Scarf? Glasses? Something academic-y?

So, I got my mugshot taken for my ID card, shuffled along to the first meeting and wished I had shuffled right back out again. I was completely and utterly out of my depth, brand new notebook and pens notwithstanding. My fellow students used words like, ‘protagonist’ and ‘Stein-esque’.

My first attempt at a short story (about a decapitated mouse) was met with silence and a withering response. Too complicated, too long, too … strange.

The thing is. I wanted to give up. I went so far as to try to formally withdraw from the course. It wasn’t for me, obviously. I grew to hate my headless mouse and everything it stood for – a symptom of my failure.

But. I trucked along. I attended most of the tutorials, inspired by my fellow students. We critiqued each other in uniquely British-polite ways and nudged each other along the path to true creative writing.

And so I came to the dissertation.

Long story short, it evolved from a germ of an idea into a little pod. And with some nurturing from my friends, it grew into something I’m really proud of. It’s 10,000 words. Just had to get the critical essay done and that would be me – a Master’s.

One problem.

My essay is terrible.

I have six weeks to turn it around and send the whole thing in.

Sounds like a lot of time, but every time I try to sit down and write (re-write):

  • The cat is on my seat
  • The plants need watering
  • The fridge needs rearranging
  • The Teenager needs an emergency cash injection

I will get there. I will purge my dire sentences, such as, ‘I pull no punches with my story’ and change them to something like, ‘with my narrative, I will not hesitate to draw upon brutal imagery’.

Doing this is my way of getting back at MS. I want to push my boundaries, explore new areas and prove to myself that I can still ‘Do’.

The January deadline is looming and keeps me awake at night, along with the usual nerve pain.

As for now, I’m off to organise my books into alphabetical order and clean my fork prongs with a micro-cloth.

Really.

p.s. I cannot end this post without a very special mention to the supremely patient Dr. Kate North, my dissertation tutor. Thank You.

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Dec 12 2016
4 Comments
Emotions

I Am MS

meI used to boast, ‘I have MS but it doesn’t have me.’ (it did)

Or, ‘MS is just a small part of my life.’ (it wasn’t)

As if I could simply package MS up and place it to one side.

It’s taken over four years to realise I was wrong, and it’s not often I admit that.

MS drives everything I do and is at the heart of how I live my life; it’s like a little spluttering train engine, tootling along, breaking down frequently but being patched up again by a team of trusty experts before bumbling on its way again.

This epiphany came to me a week ago. The Teenager was out with friends. My landline rang at 3.30 am. As I made my way downstairs to answer it, I was weak with fear. A call at that time could only mean one thing and it couldn’t be good?

I hesitated before picking up. Then. Relief flooded through me as I heard, ‘Muuuuuuum!!! Hiya!! Phone’s dead. I left my key inside. I’m at the front door, and I need the loo. Can you let me in?’

After I yelled at him and settled back in bed, listening to him humming as he brushed his teeth, I realised that I never switch off the Mother role. Why would I? It’s the best of times and the worst of times but it runs through my veins and always will. And it’s probably why my own mum still grabs my hand when we cross the road, even though I’m in my 40’s.

I chuckle (not in a bad way) when I hear newly-pregnant couples say, ‘oh this baby won’t change our lives – it will fit in around us.’ Right. Get back to me on that one?

MS is similar  – it has permeated everything by osmosis. At first, granted – unlike a baby – it was the Arch Enemy and had to be repelled at all borders. And, just as it had cunningly invaded my blood-brain barrier designed to keep it out, MS wormed it’s way into my consciousness, not to mention health. And before long, it was part of day-to-day life.

On the negative side, in the beginning and being the Enemy, it took my partner, job and my envisaged future. Were they worth fighting for? Probably not, given the circumstances of my banishment – being dumped/sacked/deluded, in that order.

However, on the positive side, MS has allowed me to pursue a life-long dream – writing. It’s given me the chance to renegotiate working hours with my new boss, which also, and more importantly, allow me more time to be on hand for The Teenager, even if I’m lying on the sofa. I’m here, and that’s what matters. Some of our best chats happen when he sits on the sofa opposite me, offloading, nattering away.

I am now proud to say ‘I Am MS’. By overturning negative connotations (even when we cannot yet eradicate the illness), we can stand up and say, ‘Yeah, so, I have MS? And?’

‘I Am MS’ does not mean surrendering. It means embracing. It is not giving up, it is about nurturing a new way of life. To those of you who may think I am indeed deluded, there is nothing that drives me more than the thought of my passionate, cheeky, irreverent father, who, if he had survived his MS, would definitely be the one chained to Parliament’s railings in protest.

I’m far too shy to do that. But what I can do is accept MS, live with it, thrive with it and hopefully, become a better person.

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Dec 08 2016
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Media

A Face For Radio …

micI was both overjoyed and terrified to be invited on to the BBC Radio Wales breakfast programme on Monday.

It would be a wonderful opportunity to speak about the short-fare taxi case I’d been involved in and the discrimination disabled people face, but it would also mean I would be speaking live to an awful lot of people.

A taxi collected me first thing; we passed a pleasant journey until he asked my why I was going to be on the radio. ‘Erm, it’s about a taxi driver. Bit awkward.’

At the BBC, I was issued a pass and told to wait. I spent the time admiring the huge Christmas tree and spotting semi-famous names rushing past me. I was then collected and taken to a holding area, overlooking the reception.

I struck up a conversation with Leanne Wood, the leader of Plaid Cymru, who had held her own alongside Nicola Sturgeon in the Brexit debates over the summer. She was waiting to appear on the ‘Victoria Derbyshire’ programme. She is quite possibly the most down to earth, friendly politician I have ever met, surpassing even the amazing Jens Stoltenberg, alongside whom I had marched with in Oslo in 1994 when Norway voted about whether to join the EU or not.

I was finally collected (the taxi was early) and taken to the radio studio and shown the host through a window. I was talked through what would happen. ‘Are you ready?’ they asked.

Erm, no? I was ushered into the main studio where the host chatted about me being on next. And this was it. I was live.

What happened next is a blur, but I listened back later in the day. I think I covered the main points and also mentioned the tricky issue of employment and MS, a real passion of mine. However, I was thrown a curveball when I was asked if I thought Brexit had made a difference to the level of discrimination disabled people face and whether it was acceptable for parents and children to park in disabled spaces.

After it was over, I had some thumbs-up from the staff, said goodbye and jumped in to a taxi back home. He asked me why I was there, and I replied, ‘oh, I was on the radio.’

‘What about?’

Hmm.

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