Category Archives: My Ramblings

May 02 2017
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My Ramblings

I’m A Finalist …

tubeWho would have thought one little line in a blog post would lead to so much?

That’s what happened when I mentioned in passing that I had been refused a taxi at Carmarthen train station, on my way to a meeting (it was a short fare, I offered a decent trip but he didn’t want to lose his place in the queue – of three taxis …)

My post was actually about The Teenager and whether he (and the cat) would survive me being away for one night.

The media picked up on it and long story short, I won the case against the taxi driver, after enduring a gruelling grilling from the Licensing Committee (the driver denied the altercation ever took place – CCTV proved otherwise). It was uncomfortable to say the least and I asked for him not to be punished unduly (this was Christmas, a prime season for taxis). All I wanted was a little more awareness.

I spoke on the radio, appeared in news articles and was filmed at home during a relapse – hence my stunned, pale face. Not helped by the fact that I was wearing a white blouse.

Anyway, I am now a finalist for the MS Awards, in the Campaigner category, and a big thank you to whoever nominated me. I’m due to go to London on Thursday evening, ready for the ceremony on Friday. However, I’m a little wary as, well, um, I’m big. Huge.

I ordered a bunch of clothes off various outfits and split seams, cried and stamped my foot.

I sent them all back.

I ordered more, and miracle of miracles, one of them actually fits me. The size will remain a closely-guarded secret. And so it is, I will be all in black – slimming, lol – mysterious, and, well, slimming, hopefully.

I met a friend for coffee this morning as I’m working from home, so can spread out the paperwork over the whole day. She bigged me up and told me to sail forth and go for it.

I will try my hardest. In the grand scheme of things (a phrase we say a lot in work), does it really matter? The best part of being there will be meeting everyone else – I’ve been to two other ceremonies (yup, I lost out twice before) and really, the people make it. There are so many inspiring, incredible and utterly gobsmackingly amazing people, it’s just a joy to be in their company.

So with that in mind, I will big myself up (lol), push my shoulders back and, um, sail? Does one sail after reaching a certain size?

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May 01 2017
8 Comments
My Ramblings

Perception Is Everything …

wombleHaving worked the entire bank holiday weekend, I’m shattered and filled to the brim with bricks/wood/steel beam measurements.

Not the best position with an MS-brain like mine.

During this relapse, The Boss has been picking me up and dropping me off for work as my legs go a bit wonky and my head is somewhere in the clouds.

Lovely. Not only do I save petrol, I also cleverly factor in Gumtree pick-ups, such as yesterday;

‘Um. Boss. Y’know years ago we did that job in that street opposite that car place?’

‘Oh, yeah? That was ages ago?’

‘Yeah, should we drive past? See if they did that thing we mentioned?’

He finally twigs. I come clean.

‘S’was on Gumtree. Same road. Free plant pots. Silly not to really?’

And so it was, I picked up loads of free plant pots  on my way home yesterday. Excellent. I had used my powers of innate perception.

I hate my routine at the moment – work, home, work, home. With a relapse, there’s no space left for anything remotely meaningful.

Except random free offers of plant pots. I spent a happy half hour scooping earth I’d bought two years ago into a free pot. There was a worm in every handful. But I was kind of happy.

Perception. I could look at it one way:

Tragic divorced single parent with an incurable neurological illness, nudging late early 40’s.

Or:

Exuberant, vibrant, independent 43 year old parent of an awesome Teenager, with an abundance of spirit … and MS’.

I mean me; I’m talking about the same person.

And that’s why I’m trying to re-frame my life – if I see myself one way, people react. The other way, people react. So, maybe I should shove all my sad-person preconceptions to one side and big myself up for once;

‘Fat MS womble, taking on the world?’

I’m embracing the F-Word at long last – Campath-Induced Grave’s Disease be damned …

p.s. this post derives from a random conversation with The Boss about the remote possibility of me venturing in to the dating world again …

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Sep 12 2016
25 Comments
My Ramblings

A Considered Response …

terrifyingI’ve been so fortunate to receive glowing reviews of my book on Amazon and Good Reads, and I treasure every single one (often reading them when I’m having a low day).

However, I had one the other day which made me stop and think.

The essence was, ‘loved the start but at the end … so much of it rambles on and is not really in the realm of most MS’ers, eg. taking on an MA’.

Do I ramble? Yes, most definitely. I even have a category on my blog labelled, ‘My Ramblings’.

It was more the second part which stuck in my head. Let me explain:

Due to MS, I have had to give up my entire career path. It just won’t happen, especially after being sacked for having MS. I was derailed. Luckily I was offered a job by my best friend, which, although fulfilling and excellent at fitting around the myriad of appointments I suddenly have, has no real career path. I will no doubt end my working days with this company.

I needed something else; something mind-expanding and difficult. As I struggled tremendously to complete my degree just when MS struck, I thought, ‘OK MS, you almost won, but get this, I’m going to try something even more challenging.’

I hit on the idea of a Creative Writing MA. Could I write anything else apart from my blog? Believe me, it’s looking like I can’t. But at least I tried.

I’m not that different from MSers who run marathons, who raise money for MS charities or hold cake bakes. Or the MSers who progress through their career path, defying their detractors. My way of pushing back the frontiers and limitations of MS is to indulge myself in something I never thought I would be able to do.

Don’t get me wrong, it’s been hell. I’ve cried, almost withdrew from my course several times, torn up endless manuscripts and sniffled in class when my short story was brutally dissected.

Perhaps an MA is ‘outside the realm of most MS’ers’. Just as jumping out a plane is for me. Or winning a gold medal in Rio.

My MA is precious to me – it shows me I still can. 

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Aug 31 2016
2 Comments
My Ramblings

MS On Board

seatI was living in London when I was pregnant with The Baby and took the bus to work every day.

I was fine standing when the bus was crammed, but as my bump grew larger, and then even larger, I still wasn’t offered a seat.

Unlike today, where it could reasonably be assumed that I’m ‘just fat’, back then I was skinny with a, well, huge bump in front of me. Still no offers, despite my sad eyes and forlorn glances at people comfortably sitting down.

So perhaps I am a little sceptical about Transport for London’s new scheme, to aid travellers like me, with hidden health conditions – read the story here. It’s a bit like a blue badge for the Tube.

First, how are you supposed to flag up the fact you’re wearing a little badge on a busy, packed tube on a Monday morning when commuters are doing their London-best to ignore everyone else? Thrust yourself in people’s faces? Sidle up to a nice-looking person and eyeball your badge, hoping they’ll notice? (note to self – this could prove to be a most excellent dating tip – I could make a badge proclaiming, ‘I’ve got MS – Date Me!’).

Second, could I really imagine myself wearing one? I’m British! Will it mark me out as somehow different? Well, yes.

Third, we’re all sceptical people; blue badges for cars are notoriously misused and I doubt these badges will be any different. Plus, as with car badges, there will be the eternal refrain, ‘but you don’t look ill’. Even though it’s all about hidden disabilities, I fear the wider public still has a long way to go before accepting this notion.

And when do you fish out your badge and pin it on? With my dodgy MS hands it could take a while. Do you then unpin it on leaving the Tube station?

Believe me, I love the sentiment and I admire Transport for London tremendously for trialling this.

However, by marking us out as different, I fear we could lurch in to uncharted territory – must we broadcast to an entire Tube carriage that we have a hidden disability? I would far rather ask someone sitting near the exit if I could possibly have their seat and quietly explain why. In my experience with MS, people are really rather nice and understanding.

Except taxi drivers in Carmarthen …

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Aug 18 2016
10 Comments
My Ramblings

Safe Haven or Prison?

homeI had a very interesting chat about the early stages of my MS the other day.

One thing that cropped up again and again was how isolated I felt.

The foot-drop, the stumbling, the jaw-dropping fatigue – they all conspired to keep me at home.

I no longer socialised, preferring to invite my few remaining friends over to mine instead, where I could lounge on the sofa, safe in the knowledge that they wouldn’t judge me or the amount of tears I cried. Or how much cake I scoffed.

I went out far less and began to place internet shopping orders for everything – groceries, books, a radio, even a packet of batteries. My lovely squishy sofa became a hateful place where I spent hour after hour sleeping my life away.

My window was a torture instrument, displaying an endless reel of everything I was missing out on. My kitchen morphed into an obstacle course, showing off the ingredients that lay rotting in the fridge and languishing in the cupboards. Meals were ready-made and unsatisfying.

In short, my home became a prison, and the more I was isolated, the more I became isolated. It seemed a vicious circle and one I couldn’t find an escape from. I realised I was in serious danger of living my life from my sofa, comfort-eating, feeling sorry for myself and developing a serious lounge-wear habit.

I don’t often talk to myself, preferring to offload to the cat instead, but this time I gave myself a shaking down. This had to stop. I used to love my house – it was a place where I was bringing up The Teenager. I had stamped our style all over it; it was fun, bright, comfortable and, well, home.

Over the next couple of months, I ventured a little further out. Ok, I got tired, I tripped up. I dropped a whole cup of coffee over myself. I started to think, who cares? And why do I care so much? It wasn’t easy. It was painful and embarrassing, but the alternative, that looming prison-home was far worse.

Nowadays, I have accepted that life will never be like before. Spontaneity has gone, never to be seen again. The rules have changed and I have to change with them or be left behind. I’ve worked out my high-energy points and low-energy points and put them to good use. I accept there will be down times, when I have to rest or pay the consequences. I make the most of the up times.

My house has returned to it’s former state – it is a place I feel safe and comfortable in. I love it. I love my squishy sofa. I love my kitchen – it plays host to fresh ingredients and a sprinkling of ready-meals and they happily co-exist. I have a stack of books ready for when all I can do is slump on the sofa, as elegantly as possible.

And now, when I’m having a really bad MS week, I’m tussling with my house again. I have a pile of uni books to read and I could do with wrapping myself in clingfilm and lying down somewhere quiet in a bid to lose weight.

My house could be a prison, or it could be a safe haven I can return to …

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