Category Archives: My Ramblings

London …

londonI ♥ London.

The Teenager was born in London and the city always holds a very special place in my heart.

So to travel down there for the MS Society Awards as a finalist in the Campaigner category was wonderful.

Sadly, The Teenager was studying, so I took my Boss and best friend, Tony, as my companion and human walking stick.

The event was to take place in County Hall, overlooking Parliament and right next to the London Eye. The location could not be more perfect – our hotel was just a few metres from the venue. We travelled down the night before and wandered around the banks of the Thames, ending up in a little Turkish restaurant.

The next day we had coffee at the South Bank Centre and then got ready for the ceremony. Or, I did. The Boss went for a walk, I panicked about my outfit, my weight, my balance, my eyelashes.

Anyway, when we got there, nothing else mattered except for meeting the most incredible people. Truly, the Awards are amazing. There was a chance to catch up with most people beforehand but there just wasn’t enough time until we were called in to lunch, and the Awards.

Reader, I didn’t win, but to be a Finalist is a prize in itself. I felt as if I was floating on air and to make it even more special, Lord Dubs was on my table. The Lord Dubs.

Back in the hotel, I changed in to jeans and comfortable shoes and made a wibbly beeline for Foyles, the bookstore. I bought a couple of books and literary magazines (half of which are waaaay beyond me), and snaffled a few of the free bookmarks. We had a drink at the theatre and wandered back to the hotel before collapsing from exhaustion.

I love London. I love the buzz, the energy, the thrill. But, when I could barely walk down the South Bank without help, I knew times had changed. It seems like only a few short years ago that I would take my newborn/toddler on endless walks down the same streets. Miles and miles and miles. And now, it’s metres before I grasp the nearest arm (usually The Boss, sometimes a complete stranger).

And now I am back home, exhausted, thrilled and filled to the brim with emotion. The Awards may showcase the finalists, but there are so many of us living day to day with MS. We are all finalists, winners, whatever you want to call it.

I may not be a winner, but I will still speak up, speak out and speak loud about the inequalities we face on a daily basis. The most heartening story I heard was that when I was speaking about employment discrimination last year on the radio, someone called in to say their employer was brilliant. That same employer won an MS Society award on Friday…

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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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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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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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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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