Category Archives: Blogging

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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MS Is Truly, Horribly Awful. And Then Some.

disgraceIt must be that time of year, but the trolls are back out.

The usual complaints – I make light of MS, I haven’t suffered enough to understand, I am a disgrace. And so on.

So rather than replying to each individual email, here goes:

How dare I complain about MS when I am taking a Master’s degree? – If only you knew how much of a challenge this is. I have no career left; that’s in tatters. My inner compromise was to take on a job to pay the bills but which left me with a void once I got home. So I decided to try my hand at writing. It’s not going terribly well. A victory for the haters?

How lucky am I to have had Alemtuzumab treatment, so how come I complain about MS?  – Yes, I am hugely fortunate and there is not a day that goes by that I don’t think about this. And you know what hurts? I took this treatment first and foremost to be there for my son – as a single, divorced parent with 99.9% of responsibility for my son’s upbringing, I had to be there for him. My dad died of his MS symptoms when he was 35. I don’t really remember him. And every single day, I am grateful that my son will never face that.

I haven’t suffered enough to understand MS – there’s a reason I don’t blog from my sofa, when I can’t get up and my son cries. If that’s not suffering, I don’t know what is. And haven’t I ‘suffered’ enough, growing up without my dad?

I make light of MS – yes, I do. Sometimes. Read more of my blog – it varies, depending upon what is happening in my life. Some blogs are heartfelt, some are light-hearted. That’s real life, in all it’s glory.

I am a disgrace to MS – I might be, it’s a personal decision how you read my blog. If you want to see how a very normal, boring, fat(ish) woman responds to a huge change in life, read on. A disgrace? If disgrace means campaigning, then yes I do. If disgrace means being a boring fat(ish) woman with MS who just so happens to blog about it, then yes, count me in. MS is not my entire life, it is part of it.

I’m not disabled, so what do I know? – so I only walk with a stick when times are rough? I only fall down the stairs now and again? Or trip over and bang my head once or twice a month? Oh, ok.

I don’t know what I’m talking about – Yes, I do. I know way more than you when it comes to my own MS. MS is unique to every person. So why is mine less valid than yours?

If my detractors would like me to suffer more, be in more pain, have more injuries and give up work, then yes, I am an absolute disgrace to MS.

But, if there is something wrong with that last sentence, then I am, in my own little way, coping with MS.

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A Celebration of Inspiration

AwardsWell. What a busy few days.

As regular readers will know, I had been nominated for an MS Society Award for Digital Media.

We were invited to a glittering ceremony in London; The Teenager was bouncing off the walls with excitement and I was tugging at my hem and trying to suck my stomach, cheeks and thighs in with limited success, having packed on the pounds in the last few months, and probably looked more like a confused goldfish than a suave and sophisticated woman.

We arrived the night before, The Teenager delighted with our hotel room (oooh, there’s a kettle!), although he lost the Bed Battle: we shared a twin room and I bagsied the double bed and he got the single. He got his own back though, as he had packed his Playstation 2 (he’s totes retro) and hooked it up to the TV, shooting people left, right and centre. He explained it was for his ‘down time’ as he had also brought his study books.

We spent a wonderful evening with Janis Winehouse and her lovely husband, Richard, meeting at their house where The Teenager posed with one of Amy’s Grammy Awards before going for dinner at a local Greek restaurant.

The next day, we arrived at the venue and were soon in a whirl of catching up, meeting new people and being whisked away for photographs. Me and The Teenager had to sit on chairs next to each other, looking natural. Lol. After the ceremony, we did the same thing, although outside, right on Liverpool Street and without the chairs. Bemused commuters slowed down as they passed us posing by some balustrades. Were we famous? Er, no.

The Teenager was hyperventilating when he saw the lunch seating plan and danced around me as I tried to hold a serious conversation with people during the pre-ceremony drinks – ‘Mum, mum, mum, mum, remember Doctor Who? Billie Piper? Rose? Her mum? Well. Her mum in Doctor Who is sitting next to me. Honest.’ Yup, the amazing actress Camille Coduri was placed next to him and he was mesmerised as she chatted to him about his studies and how it was to work next to David Tennant.

He nearly fainted when he saw The Vaccines sitting at the table next to us and plucked up the courage to chat to them and get a few photos – he’s going to see them at the Reading Festival in the summer. His joy was complete.

I didn’t win the award, the honour going instead to Stuart Rose, a phenomenal fundraiser for the MS Society who is passionate about raising awareness about MS. Luckily there were no cameras trained on my face as, at the same time the award was announced, I had a text about my mum and burst in to tears.

Not the best timing, but I took myself off and sat quietly in the reception area and fixed my mascara (it really, really isn’t waterproof – they lied). I slid back to my seat, just in time to well up yet again when the Young Carer Award was announced. It was a truly incredible ceremony.

The next day, I woke up with a horrible cold and sniffled my way through an MS Council meeting at the head office of the MS Society before heading back to Paddington and back to real life.

I may not have won for my writing but it’s not the winning, it’s the taking part that counts, and everything me and The Teenager experienced was beyond amazing.

I have just heard that a little short story of mine has been accepted for publication – the second anthology I’ve been included in. I’m starting to think that although I didn’t win for my blog and book, I’m still doing ok.

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