This year the 28th April to the 4th May was National MS week. A whole week dedicated to raising awareness about MS.
26th April – MS Life
For me it started on Saturday 26th April with MS life. Avid readers of this blog will no doubt recall I wrote about this back in 2012. For less avid readers or new visitors you should check it out (Post 21 The MS Convention).
MS Life can best be described as a big old get together for people with MS. That isn’t to say it’s exclusive nor that proof of diagnosis is required by big burly bouncers on the way in … ‘if you’ve not got at least one numb limb you’re not coming in …’ After all us MS-ers are a pretty friendly bunch.
But I can’t imagine why anyone without MS nor supporting someone who does have MS would want to go. That would be like me going to a Star Wars or classic car convention … I just wouldn’t be interested. So it would seem that out of the couples and small groups of people there it would be safe to assume that at least one of them has MS and that the others were there to lend support. But then again who knows, who am I to say what constitutes a good day out.
The main purpose of the event is to share information. For research scientists to explain their work and what they hope to acheive. For medical practitioners to offer help and guidance. For manufacturers to demonstrate their products. For fellow people with MS to share their experiences.
A whole big circle of information, like a file sharing website dedicated to MS.
Last time I went to MS life it made me sad. It was like giant slap round the head with a mobility scooter. A moment of realisation. A big fat dose of reality. Of the future as it could be. This time was a much more positive experience. Maybe it was because I knew what to expect. Maybe it was because mentally I am in a much better place than I was in 2012. Or maybe it was because I had the two people I love the most in the world by my side. Whatever it was I felt positive. I laughed with the guys demonstrating the motorbike like attachment that turned their normal wheelchairs into speed-demon-wheelz. I chatted with the lady from the MS Therapy Centre in Trafford Park of all places. And best of all I met a friend I had met through Twitter, through us both having MS.
Maybe it wasn’t so bad afterall.
28th April – New Magazine
As part of MS week ‘New’ magazine were doing a feature on women living with MS.
The MS Trust contacted me having read my blog and asked if I would be willing to take part. I have always been quite open about having MS – afterall I write this blog -so I didn’t really have any reservations about it. I was interviewed at length over the telephone. I was asked about my diagnosis, my symptoms and about my life during a friendly chat with the journalist who was writing the feature. They even arranged for a photographer to visit us at home and take some photos. Very celeb- like! It was a lovely sunny day when he came and we went to the park. I don’t like having my photograph taken and so posing next to a tree with lights poised in the undergrowth didn’t come naturally to me. Having said that I was really pleased with the results and Raffaele was undoubtedly the star of the photo-show.
It was just a shame they didn’t also send along a hair and makeup team. And a rail of designer sample garments for me it chose from. And a pair of killer Louboutins … But hey ho, there’s always next year.
2nd May MS Society Cake Break
For the past year or so the MS Society have been running a ‘Cake Break’ campaign. The idea is that people hold a cake sale / coffee morning to raise money to help fund the work done by the charity. This seems to be a really popular idea at the moment especially given the recent upsurgence in baking.
My friend Wendy and I decided that we would hold a Cake Break in our office. This was a particularly good idea as Wendy just so happens to be an amazing baker. My friend Neil had just completed the London Marathon for the second time for the MS Society and I thought it would be a good way to add to his fundraising without having to actually run anywhere…
We decided on 2nd May pretty much my chance. We were going to hold it sooner but dates had already been snapped up by other charitable endeavours at work and so we settled on 2nd May. We didn’t realise it was MS week at the time but in the end it worked out to be a great end to the week.
We got several volunteers to bake and numerous customers who selflessly rose to the challenge and polished off the lot for £1 a slice. The fact that we raised £250 goes to show just how much cake was consumed that day.
My running days might be over owing to my wobbly-MS leg but to be honest I was never any good at it anyway. I’m still a pretty good cake-maker. And an even better cake-eater. And anyway, if you can’t do it in heels then it probably wasn’t worth doing in the first place ;)