Tag Archives: MS Society

From Platform 12 To Number 10

Number10Well. Blimey.

What an incredible day I had yesterday.

I’d been invited to mingle with the MS Society’s most influential people and the Prime Minister’s wife at No. 10 Downing Street.

Me.

One personal shopper at John Lewis (‘ah, yes, I can see the problem … clearly‘) and a quick visit to the hairdresser (‘hmm, I’ll see what I can do’), and I was on my way to London.

My outfit was in a suit bag, my book-club book dutifully backed – I’m on page 789 out of 1500 and the meeting is looming – and I was as ready as I’d ever be.

I had the fortune to travel with the Chair of the Welsh MS Society Council and she calmed my nerves. We chatted all the way to London and before I knew it, it was time to change into my Outfit. Hair intact (all that hairspray meant it was pretty much bullet-proof), we ended up in the loos at the Paddington Hilton.

I locked myself into tiny cubicle and changed, a supreme feat of MS endurance. Limbs were flailing, balance was pretty dodgy. I emerged 15 minutes later, slipping on my extremely flat shoes and stuffing my jeans and boots into the rucksack I’d borrowed from The Teenager.

Quick make-up touch-up in the dimmed lights (so heaven knows what I looked like in real life), jewellery on, outfit smoothed down and I was ready to go. And what better way to start the evening with a glass of Prosecco. So we did.

Anyway, we checked in my student rucksack at the Left Luggage and hailed a taxi to 10 Downing Street, passing Buckingham Palace (Queen was away on holiday). And then we were there.

We waited in the pen they have outside Downing Street and I made friends with one of the six policemen with machine guns. He was absolutely gorgeous and I regret not leaving my mobile number, but anyway, we made our way through security (me with a sad backward glance at Handsome Machine Gun Man), x-rays and the like and found ourselves standing outside the iconic building.

We handed our mobiles in at the entrance and then, joy of joys, we ascended the staircase featured in ‘Love Actually’. I was in heaven. We made our way to the reception, to be greeted with trays and trays of drinks and canapes. I studiously avoided the canapes – cream top, I knew what would happen – I’d bite into a Hoisin Duck mini-wrap and squirt sauce all over myself and my companions.

I mingled, I squealed with sheer excitement and mingled some more.

I was told that Samantha Cameron had arranged to meet certain people before her speech, so when she entered, there was an itinerary. But somehow, and I’m not sure quite how (honestly), I found myself next to a famous pop singer whose mother has MS, so I shook hands with the Prime Minister’s wife and had a quick chat.

At the end of the meeting, there were wonderful speeches and we truly are in safe hands, all of us with MS. The message is getting out there – MS is being kept in the public eye.

On the way home (Queenie still not in residence), we reflected on our evening. Then we got to Paddington and I reclaimed my baggage, reverted once more into student clothes, bought a huge burrito and caught the train back to Wales.

A wonderful experience. And my hair is still stiff from all that back-combing.

Tagged , , ,

My MS’s First Birthday

Carly's BlogCarly is my guest blogger today – she experienced her first MS symptom at just 17 years old and was finally diagnosed at 26. She has a wonderfully positive outlook on life. Have a read, she’s inspiring:

My MS’s first birthday, 4/02/14 (although like the Queen, it has two).

I always thought I was a bit odd. Things would happen, but I didn’t feel confident telling people, and anyway, the ‘things’ would go away eventually.

I was 17 when I had my first bout of Optic Neuritis, and I felt confident that losing the sight in one eye for 6 weeks was worth mentioning. After several visits to my GP and the opticians, it was put down to a migraine, and as I was currently studying for my A-levels, it made sense that it could be stress induced. Well, made sense to other people, unbeknown to them I wasn’t keen on education and spent most of my time playing pool in the pub near school, or doing extra shifts at work.

Anyhow, that’s not to be recommended. It was a couple of years later I had lhermitte’s sign and transverse myelitis, but this was put down to trapped nerves. And I was cool with this, and that’s how my life went until 15 months ago, when aged 26, my body just gave up on me. A couple of nights in hospital, an MRI and an LP, and I had a provisional label.

MS. That sounded pretty serious. Like many people, when I thought of MS, I pictured wheelchairs, walking sticks, and older people. I worked 60 hours a week, rode a motorbike, travelled, drove 30,000 miles a year, and walked my dog twice a day. However a bit of time on the internet, and I soon realised what MS was, what it did, how it manifested its self, and that I most certainly had it.

When I finally saw my neurologist two months later, on 4th Feb 2013, I was ready for the diagnosis, and left the hospital feeling lighter than I had in ages. This didn’t last, I was soon back on the rollercoaster of emotions, but people were there for me; my MS Nurse, MS Society forums and help lines and I won that battle. I know I’ll never win the war, but that’s OK

My nurse came to see me today (though I think she really came to see Ollie, my dog). We got on to my emotional/physiological wellbeing, and I can honestly say I am the happiest I have ever been. I work 40ish hours a week, the motorbike is being sold (but that’s due to a whiplash injury), I travel, drive 20,000 miles a year and walk my dog twice a day.

Last year, pre big relapse I cycled from London to Brighton. I know I am lucky, I’m still very able bodied, but I’ve also got a new outlook on life. I’m grateful for what I’ve got. I have days where I simply cannot do anything, when I get tired I drag my left leg and dribble (yup, still single!), I struggle getting my words out, forget what I’m saying and often what I’m doing. My left leg is currently on fire and the often visited toilet has relocated to the top of Mount Everest.

But, I have wonderful family, a job (and employer) I love, the most handsome dog in the world, and a small, but perfectly formed group of friends, and I intend to enjoy it for what it is, and take each day as it comes. There is that saying, ‘life is too short’. For me, life as I know it is short, but it is still life, and for that I am grateful.

Tagged , , , , , ,

MS Society To The Rescue…

downloadMy last post about how hard it is to describe MS to other people struck a chord with lots of you and a huge thanks to everyone who retweeted it and posted it on Facebook.

Well, those lovely peeps at the MS Society have just given their introductory guide to MS a makeover. The guide – What is MS? – is for anyone interested in the condition and can be useful to give to your friends, family and colleagues. (click here to have a look at it)

It’s still going to be hard to describe what MS is like, but this is a great starting point. This compact edition has only seven sections, compared to 14 in the last one:

  • What is MS?
  • What causes MS?
  • What are the symptoms of MS?
  • How is MS diagnosed?
  • Are there different types of MS?
  • Can MS be treated?
  • How can the MS Society help?

Feedback on the previous edition now means that the booklet is A5 rather than A4, has a photographic cover to make it more visually appealing and the amount of text has been reduced. There’s also lots more graphics so the information is easier to read and take in.

This new guide is a lot more upbeat and fresh (even The Teenager gave it a thumbs up). Have a read, download it and hand out to everyone you know. The MS Society is always on the ball with information and leaflets covering every aspect of life with MS. I’ve got a whole bunch of them at home that I picked up at last year’s MS Life in Manchester. So spread the word – knowledge is power.

p.s. MS Life 2014 will be 26th – 27th April. Click HERE for more details.

Tagged , , , ,

In It Together

MSThe MS Society held a brilliant event in Swansea yesterday, ‘Living with MS’, which I persuaded my long-suffering boss to drive me to with the lure of Welsh cakes and a nice lunch.

The event was interesting and engaging and was also a celebration of how far we have come in our understanding and treatment of MS since the Society’s inaugural meeting sixty years ago.

To put this into perspective, just twenty years ago there were no disease modifying treatments for MS. Today, there are seven, with four more on the horizon.

The talks and flow of information at the event were fantastic, but what I enjoyed more than anything was the support and sense of belonging. MS can be a very isolating illness affecting every area of life. As a single parent (yup, get the violin out), there are long evenings when I am alone with my fears and jumbled thoughts, without someone to rein me in and help keep things on an even keel.

To be surrounded by other people living with MS is comforting. I feel accepted and less alone. Sharing stories and laughing with each other in the face of MS is balm for the soul.

I went to a workshop about ‘Looking after yourself’. Listening to other people speak reassured me that my thoughts and fears are not unique to me – we all struggle in some way or another, whether we are newly-diagnosed or have lived with MS for decades.

Lunch was an opportunity to catch up with old friends and spill coffee down my top, just in time to sit on a question and answer panel about family life with MS. As this was at the end of a long day, I was ever-so-slightly tired and I’m sure I rambled incoherently about MS and The Teenager and how we had adjusted to life with MS.

We rounded the day off with donuts and more coffee before heading home. I took away the thought that even though each of us with MS copes in our own way, we all know we are in it together.

Tagged , , , ,

The MS Lottery Of Treatment And Care

Lottery of treatment and careOn Tuesday I went to the Welsh Assembly in Cardiff Bay to attend the launch of the MS Society’s new report, ‘A lottery of treatment and care’.

After going through security (where I had to remove my belt, very embarrassing for muffin-toppers like me) and picking up my ID badge, it was time to catch up with friends over lunch.

The buffet was excellent, but I was very well-behaved and didn’t sneak a little bag in to take some home, even though I was tempted to swipe a couple of the gorgeous cakes.

The launch went perfectly, my only gripe being that there weren’t enough chairs set out and after standing/leaning for a while, I had to move to a sofa at the back of the room, but I still managed to see and hear everything.

The report is hard-hitting and in places, shocking. I had no idea there were only FOUR neurologists who specialise in MS in the whole of Wales, and they are all based along the M4 corridor in the south. Perhaps this plays a part in the fact that six out of ten eligible people do not take disease modifying treatments. In Europe, only Poland and Romania have a smaller proportion of people with MS taking such treatments.

Of particular interest to me, only a quarter of people with MS who are of working age are employed, compared to three quarters of the wider UK population. My being sacked for having MS highlights the fact that discrimination in the workplace is very real and is still happening, despite a raft of measures put in place to prevent this.

The MS Society is calling on all four governments in the UK to ensure that every person with MS has a personalised treatment, care and support plan, with two comprehensive reviews.

We should all read this report and we should all be angry. Yes, there have been some fantastic developments over the last few decades, but if access to services and drug treatments are limited and unfairly distributed, we need to let the decision makers know.

All of us can do something, even if it’s just signing a petition. We need to keep MS firmly in the spotlight.

Tagged , , ,