Tag Archives: MS Society

Jun 06 2018
2 Comments
My Ramblings

Reach Down, Raise Up

MS sometimes feels like a ladder.

Six years ago, it felt like I was somewhere around the bottom, in the murky depths, desperate to get a handle on the slippery first rung towards diagnosis, treatment and, well, ‘thank goodness I now have an explanation for what the hell’s been going on for the last year‘.

I spent hours and hours on the MS Society forums, asking question after question. Patient people who had been there before answered every niggle, every question, no matter how weird it sounded.

They reached down and pulled me up and I will forever be grateful to them for their guidance and support.

Limboland is a cruel place to be; essentially, you wait there in the ‘hope’ you have another relapse and are then moved from a single episode to ‘multiple’. So, you pray to get worse, to get better, because it’s only then that you can access the treatment that will potentially stop the next relapse.

I vividly remember the elated posts from fellow ‘Limbolanders’, ‘Finally!! I’m diagnosed!’ I was envious beyond belief and confused in equal measure. How can you be so happy to have MS?

I soon found out.

Like a magic door opening with a secret code, my eventual diagnosis offered up a myriad of treatment options.

Next week I’m taking a day off work to train with the MS Society as a Support Volunteer. The focus is firmly on the social model of disability, which centres upon choice and control.

I hope to learn skills which will allow me to reach out to pre-diagnosed people and those who are newly-diagnosed; I want to learn how to offer non-directive support and take on board an individual’s unique circumstances without judgement.

I’m looking forward to the course and giving back at least a tiny bit of the support I received all those years ago. If I can ease someone’s journey into life with MS, I’ll be over the moon.

Volunteering often sounds like a massive commitment, and I will be honest as to how much time I can offer, but it could be as little as one phone-call a week, or one quick coffee. Hopefully I will be able to offer more, but if anyone is thinking about volunteering, go for it.

I’d love to meet that one particular person on the MS forums (amongst many others) who took me through, step-by-step everything I asked, with her incredible medical knowledge.

I probably never will, but the one thing she said to me is, ‘if you found help in what I have offered, do the same, when you are ready.’

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May 07 2017
16 Comments
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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Sep 15 2016
6 Comments
Media

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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Sep 04 2016
7 Comments
Blogging

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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Apr 29 2016
8 Comments
Blogging

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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