Category Archives: Blogging

Writing The Wrongs

One of the best things about having a blog is encouraging others who also want to start one.

Over the years, since 2012 when I first signed up to WordPress, I’ve spoken with people all over the world about how to get started, how to keep up the momentum and just how to have a real idea about what it is they want to say – what they have to say.

Back then, in the dark old days, I wanted to express what was happening after my MS diagnosis, what I was feeling. I was disoriented, lost and experiencing an entire whirlwind of emotions. Plus, I was also being slowly bullied out of my job.

I reached out to a writer who had written a very personal account of her MS in a national newspaper, about her struggle to come to terms with a life with MS. It was raw and brutal, exactly how I felt. We communicated back and forward through emails and she encouraged me to start a blog. The rest is history. Thanks to her, I’ve gone from blog to PhD.

I always wanted to be a writer, so perhaps that is why I feel privileged to be following this path now. MS shunted me from the career I was building to a building career – I work as a project manager for a building company. The irony doesn’t escape me.

But I wanted something more. I love my job – it allows me the flexibility and creative talent to excel at what I do, but it’s not everything. It also has an end-point. My energy is limited, I fall asleep at awkward times, I trip over stray wires, I repeat stuff. Luckily, I work with my best friend who knows more about MS than anyone else.

Writing has allowed me to discuss, dissect and analyse every single niggle I’ve ever had with MS, and bringing up a Teenager throughout a life with MS. Abject loneliness has been replaced with a worldwide hug of immense proportions. You guys just … get me.

You’ve been through the ups and downs, you’ve seen The Teenager through the best and worst of times. You even took the time to send him messages of support when he was in a grim place and he read every single one with a smile on his face.

Writing is incredibly powerful and I didn’t realise that until I started. I poured out all the pent-up angst and you were with me through my epic Pity-Party-For-One.

It’s hard, baring your soul. But, you guys have shown me that it is so, so worth it.

If when I attain my PhD, you’re all invited. Without you, it wouldn’t happen.

Reach out and lift up …

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I Promised …

When I first started this blog, I promised two things:

That my blog would be honest, raw and at times, uncomfortable about life with MS. And that I wouldn’t write when there was nothing to write about.

I worry I’m reaching that point?

I am ok. The Teenager (bar recent events) is doing well.

I worry I’ll begin boring you guys with the same problems:

  • I’m still single
  • I’m still fat
  • I still trip over anything and everything
  • I am as tired as ever
  • I still worry about the future
  • And I still don’t play a musical instrument

I don’t want to repeat myself and weirdly, in writing that list above, I think, hmm, is there anything I could/should have done to change it?

Six years on, why is the list the same? And is that it?

Of course, that’s the negative list, and I’ve written about my upsides, the gratitude, my self-awareness that I’m beyond lucky to still be out and about with MS, albeit limited.

I wonder if I’m more cautious as I could be judged on what I write – I know people I would rather not read my blog read it, and maybe that makes me more hesitant to bare my soul?

I’d love to hear what you think?

Should I take my ‘Still …’ list and turn it into an action plan?

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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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