Tag Archives: MS Society

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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Script To Screen

spoonfedThere was me, thinking I wouldn’t be able to visit MS Life in London this weekend.

Well, earlier today I was in the middle of re-wiring a plug, drinking a cold soya latte and eating some onion ring crisps when I had a call.

There is to be a screening of Spoon Fed, a short film about MS, starring the wonderful Lesley Sharp (Scott & Bailey) and Joseph Mawle ( Game of Thrones and Birdsong) at MS Life on Saturday.

And me! (I’m the depressed-looking one, shuffling in to the support group and saying ‘hi’ to Joseph before taking a seat).

(That took me seven takes, honestly. This acting malarky is hard).

Would I be able to attend and take part in a question and answer panel afterwards?

Erm, if it’s a choice between plumbing in a bathroom and getting stuck in a serious amount of mud (long story) or swanning off to London, I said yes straight away. The details would sort themselves out.

To be involved in such a great project from start to finish has been brilliant; I met the actors in an intense rehearsal session where I answered every question they had about MS and how it had impacted my life.

The next day, I was at the shoot, watching Lesley Sharp capture my ‘MS walk’ so completely, I welled up. It was me on the screen.

spoon-fed-editedfilm

The production, from start to finish, has been superb. Have a little read here.

If you’re attending MS Life at the weekend, please stop by around 6.45pm on the Saturday.

We’ll be in the main theatre and it would be fantastic to see you!

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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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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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Handbags and Gladrags …

fatWow. Blimey.

My blog has been short-listed for an MS Society Award,

Three things go through my mind when I got the magical email:

  • Wow. Blimey.
  • Gah. Double gah. What. On. Earth. To. Wear. To. The. Ceremony?
  • What will The Teenager wear? Now he is very, very tall and has worked out a lot?

I must clarify, I’m not precious: most days, I hang out in baggy builders’ trousers, with seventeen pockets full of screws and a pad and pen in my hand. Just in case. I wear a bobble hat (dust always falls from the ceilings). In short, I am the furthest from glam than you could possibly imagine.

A day off for me is baggy jeans and a baggy top. And flat boots. Air-dried hair, slumped shoulders.

I literally (and, as an aspiring novelist, I don’t use this word lightly), cannot imagine me in a dress. Or a skirt. Or a skort. Or culottes. Which leaves trousers. Capri, full-length, baggy, tight.

Perhaps I should do a Jenny Beavan?

Anyway, that to one side, this is a great opportunity to turn it back to you guys.

Almost four years ago, out of sheer despair, I started my little blog with the encouragement of M. J. Hyland, a wonderful novelist; I had contacted her after reading an article she wrote for The Observer about her MS.

We emailed for a while and she suggested I blogged. The rest, as they say, is history. Almost four years later, my little blog has over 4,000 hits a month and is read in over 100 countries.

For a teeny-tiny MS blog, I’m chuffed. I write the blog I wanted to read – life is more than MS; it’s all about friends, family, work, studying, falling over, picking yourself up and … MS.

So, tonight, me and The Teenager are celebrating. He’s had a Domino’s pizza (treat night, once a week, to make up for having a ‘ripped and toned’ gym routine the other six nights).

As for me. I’m just taking it in.

One last thing – without your support, your comments, your ideas and encouragement, I know that I would not be here today. I would still be having that first Pity Party for One I mentioned way back in 2012. And where would I be then?

How times have changed.

Thank you for travelling this road with me.

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