Category Archives: Blogging

Research Request – Can You Help?

I’ve been approached by Jowinn Chew, a first year PhD student at King’s College London, based at Guy’s Hospital, supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.

Their research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS.

They need you guys to help them out, so it would be great if you could take a little time out to get involved.

Jowinn explains what will be involved in the task:

You will be responding to statements concerning general thinking patterns and mood.

Following this, you will then move onto the main task, where you will read through a series of twelve short descriptions. Afterwards, you will then be presented with several sentences. You will be asked to rate how similar the sentences are to the original scenario.

We expect that the task will take approximately up to 40 minutes to complete.

If you’re interested, click here! And, thank you.

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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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A Weekend In Amsterdam

amsterdamMe and The Teenager headed to Amsterdam last week for the HackAMSterdam event; teams of designers from across Europe coming together to create innovative solutions for common MS problems.

His task was to get me there and back in one piece, my energy and courage for travelling having been somewhat diluted since MS.

Back in the day, I was a fearless traveller, criss-crossing the globe without a care in the world. Nowadays, I print off timetables just to take the bus in to town, which is a bit sad as I have a bus stop right outside my house. Every time I wait there, I remember the time I slept in a bus shelter in the Faroe Islands to save money.

Anyway, our flight left at 6am, so I was up at 3am checking items off my list:

  • feed cat
  • water plants (and talk to them, time permitting)
  • remember phone charger
  • wake Teenager
  • wake Teenager again

What I didn’t bank on was the pesky cat bringing in a live mouse at 3.18am, which threw my whole schedule out, as I chased her – and the mouse – around the cottage in my dressing gown.

Mouse safely deposited back outside, I tried to wake The Teenager. He grunted. Rolled over in bed. Grunted again. All I had to say was, ‘Amsterdam’ and he shot out of bed, grabbed his towel and jumped in the shower (note to self).

At Cardiff Airport, after we had checked ourselves and baggage in, we sat in the cafe. 5am. The Teenager was boggle-eyed and stage -whispered a running commentary:

‘Muuuum. Mum! That man in the weird costume is drinking. Drinking!’

‘Muuuum. Mum! That woman with the willy thing on her head is having another glass of wine! And she’s, like, dancing.’

‘Shhhhhhhhhhh! Stag and hen do parties. Now eat your sandwich and be quiet. It was expensive.’

The flight was great – no sooner were we up in the air than we came back down again. We battled through Amsterdam Airport, The Teenager rolling our shared suitcase like a pro.

While I was at the event, he put his back-pack on and ventured out in to Amsterdam, meeting me back at the venue with a rabid hunger and tales of his experiences around the city – his profound sadness at the Anne Frank museum mingling with excitement as he wandered around the Heineken Experience. He was moved in ways I hadn’t expected – he said he felt privileged that it was people like Anne Frank who kept the legacy of the Holocaust alive. Someone his age, on the cusp of life.

In a moment of utter madness, I asked him, as we had a good few free hours on the Sunday, what he’d like to do together before our late flight back. I had visions of Ye Olde Amsterdam, tulips, clogs. The Teenager had other ideas.

And so it was that I found myself cheering on Ajax Football Club at the Amsterdam Arena during a terrible storm, our suitcase having been left at Amsterdam Central Station. Despite:

  • Knowing nothing about football
  • Freezing to the very end of my toes
  • Not being allowed to read my book

I enjoyed the match. Ajax scored five times so that’s good. We made our way back to the station, picked up our suitcase and took a train to the airport. The Teenager observed, ‘Mum, like, mum, you know, there’s no fat people in Amsterdam.’

‘Why you looking at me?’

‘Jus’ saying.’

Through security, I was gratified when the customs man (very handsome) spoke to me in Dutch and then apologised when he realised I spoke English. ‘You look Dutch’ he said. I said, ‘ner, ner, ner, ner ner’ to The Teenager.

We finally landed back in Cardiff, The Teenager loudly proclaiming ‘I miiiiiiiiiiiissssssss Amsterdam’.

And I did too.

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MS Life – Go!

ms lifeI went to MS Life in 2012, shortly before I was diagnosed.

It was the best thing I ever did.

I was full of trepidation before I went, but it was well worth the journey from Cardiff to Manchester.

This year it’s in London and I urge you to attend if you haven’t been to one before.

I was lucky enough to speak in-depth with a wonderful MS nurse, who guided me through the McDondald Criteria, my symptoms and  my options. She answered all my questions and made me feel empowered, which was fantastic as I was due to have a meeting with my neurologist soon after.

With what we had spoken about, I felt a lot calmer for the neuro meeting in which I was subsequently diagnosed and DMT’s were brought up.

And that’s what it is all about – information.

I’m that kind of person, if I know what I’m up against, I’d like as much information as possible. I’m a ‘cover-all-bases’ peep.

Anyway, back to MS Life – a celebration of MS in all its guises. I collected my bag full of – information – and gathered even more information from various stalls (check out the MS Trust stand – it’s superb) before heading back to my hotel room and reading every single thing.

Knowledge is power. Everyone I met at the event was friendly, enthusiastic and helpful. No question was too small or seemingly insignificant.

I’d love to attend this year but sadly my finances are limited, however I’ll be keeping up to date with all the talks and events.

Please go, if you can. And if you do, could you snaffle me one of the bags you get when you register?

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I Get Knocked Down. But I Get Up Again …

GodfatherWell, the truly troll-y emails I received knocked me sideways and then way down.

Normally, I would read, fume, delete and ignore, but this year has been fraught. Not the best timing.

The very medium which brought me to the trolls attention has once again become my saviour – my blog. Your comments and emails have been incredible; I’ve read them over and over again and they really have built me back up. I honestly can’t thank you all enough.

I don’t know where I would be without my supportive MS family.

I decided to write an open reply the day after The Teenager went on holiday with his dad, to give me time to gather my thoughts, have a few sniffles and many pangs of massive self-doubt, then be ready for when he gets back. Which is today. Or so I thought.

I sent him a text last night wishing him a fab flight and had organised a day off work to pick him up. The fridge is stocked with high-protein foods and the shelves are bulging with Special K.

He texted back, ‘Yeah, ta. Flight’s tomorrow?????’

Yup, MS brain at work again. So I have another full day in a clean and tidy house, with no wet towels hanging up on the floor, no sink full of bowls, no loud music. Bliss.

A bit more time to think before I put the whole trolling episode behind me. It’s so easy to hide behind a computer screen and spew bile. It’s also easy to click ‘send’, without giving any thought to the damage inflicted. My blog is public – my name is on the photo at the top of the blog. The only time I remained anonymous was when I was going through a court case for unfair dismissal, on the advice of my lawyer. As soon as the case was settled, I was out there.

I’m real and it’s been hard to write some of the posts over the last four years, but I think it’s important to show what real life can be like with an illness like MS. If I had written anonymously, I doubt I would have been more honest, and I wouldn’t feel a connection with you guys, because you wouldn’t know the real me. ‘Here’s me looking fat with a couple of TV and film stars!’ ‘Here’s me, attempting to look intelligent and intriguing on Twitter!’

A funny thing happened to me today. I was browsing in a charity shop (holding a size 18 top, gah), when a man walked up to me and said, ‘Hello, I know you!’. Long story short, I had bought a canvas picture of The Godfather for The Teenager from him through Gumtree a good year or so ago and we had got chatting on his doorstep. I mentioned my book and he later bought it.

He said to me, ‘You know, I would never normally have read your book, but after meeting you I did. It’s totally changed my perception of MS. When’s the follow-up?’

If us peeps with MS can bring attention to MS, live as well as we can with MS and offer a hand-up to those of us who are struggling, our MS family is stronger together.

So, that’s MS and me – 1, Trolls – 0. Or, as The Godfather would say, ‘Never hate your enemies. It affects your judgment.’

p.s. I just have to include a comment on my last post, by my Aunt Karin, my dad’s sister:

As your aunt and your late father’s sister I must say how proud I am of you. You are a joy and an inspiration to so many. Never let your detractors dampen your spirit. They should “Stumble in Your Flats for a Day”.
Uncle Ronnie and I love you so very much.

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