Kiss Good Bye to MS
So, here we are half way through the Month of May, and I must say I’m feeling rather proud, I’m sticking to my challenge I set for myself in a bid to support the Kiss Good Bye to MS campaign. Having been diagnosed with MS almost 7 years ago and having had my first major episode 8 years ago, though looking back, there had been many, I just hadn’t realised what I was dealing with. But having spent time adjusting, learning, balancing and most importantly accepting what life with MS truly means, I feel it’s time to join the campaign and raise awareness, gain some support where possible and at the very least a little clearer understanding. I guess i fee a little responsibility to use my platform for something good, I mean, staging the best shoes at the best price, the best beach, the greatest dress are all pretty important, don’t get me wrong, but obviously I know better than most MS is pretty life changing, and very much an unknown, misunderstood condition. I am still learning about my MS, what is a symptom, what isn’t but feel like one, knowing when it’s changing, progressing, spotting the signs, learning how to deal with them, combat them where possible, cope with them were not, it’s a constant journey, I’m learning, everyone around me is learning, and what I realise now that I didn’t quite get all those years ago, the medial practitioners are also constantly learning, this thing is a journey, a constantly changing unpredictable journey.
Kiss Goodbye to MS is the world’s biggest international community of people fundraising for multiple sclerosis (MS) research.Globally, twice as many women are diagnosed with MS than men. Multiple sclerosis (MS) is a condition of the central nervous system. In MS, the coating around nerve fibres (called myelin) is damaged, causing a range of symptoms. More than 100,000 people in the UK have MS. Symptoms usually start in your 20s and 30s and it affects almost three times as many women as men. What is important to realise about MS, which many people including the department who continually question (maybe through 3rd party subcontracted agencies) the state and validity of someone claiming they are disabled and have MS. Once you have it, it doesn’t go away ever. Symptoms change over time, but the illness will not be cured. if you have Ms today, you’ll still have it tomorrow, and next year, until we find a way to cure it.
If we’re all still learning, then we need more research, we need more opportunities to discover solutions to the seemingly never ending stream of problems. We need get to the position where we can stop plugging the leak, as we treat one symptom, another erupts somewhere else in our bodies, it’s constant battle, so we need to get to the root, we need to find it, tackle it, and this as with all things takes funding.
It’s not a popular disease for people to support because it is so hard to understand, people tend to like to be able to identify with something, feel they know what they are getting behind, for all the times I’m told, “but you’re alright though aren’t you?” “but your MS doesn’t really affect you” “You don’t understand, she’s suffering from (input any disease) so she’s really ill” I find one thing most people with Ms tend to do, especially in early days, is play it down, and that’s where we go wrong, we need to draw attention to it, raise awareness, make people have a glimmer of understanding of that which none of us can actually understand, including us living with it. This is the only way to perhaps gain support, and funding and most important of all, answers, leading to solutions
The thing I have given up for MS is magazines. No, don;t do that, don’t scoff and say “is that it?” that’s akin to, “yeah but you’re alright though.” The reason I’ve chosen to give up magazines because for me, they really are my comfort zone, and Ms is about coming out of our comfort zone. I love wine, I love chocolate, but I can just as easily do without them. But stopping me buying any glossy luxury magazines to kick back and relax with is truly a hard task. For me, that smell, when you rip open a brand new magazine, when you are the first person to touch it’s glossy pages, just gives me such a feel good factor. Even in times of austerity I would tell myself I’ll cut back on going out, no holidays, no wine, but i’ll have bubble baths and glossy magazines, always!
So, this is me, out of my comfort zone, it hasn’t been easy, but I haven’t touched them, opened covers, even when my husband forgot and arrived home with a new thick glossy Vogue waiting for his gold star kiss of appreciation and I shrieked “NO” and made him take it away. This is determination because this is important. I’ve saved a fortune, I can’t tell you how much incase it’s read by the rest of my household, it’s actually embarrassingly high but when I total it all up (the proceeds will be going to the MS society.) I realise just how much I spend, akin to a smoker buying cigarettes every day, I feel justified in the various magazines. Sometimes I buy the foreign version of the same publication, so American Vogue, Italian Vogue, etc, this is not exclusive to vogue by the way, I would sell a kidney for Tatler or an Elle, then there’s my magazines focused on women of colour, where else do I get hair inspiration identify with the pages before me. I just LOVE the glossies, and taking out subscriptions and scrolling online does not deliver the same guilty pleasure as my shiny magazine pages brought home like a trophy from the shops.
So, the bottom line is, I want to urge you all to give some time and attention to what MS is the work of MS society, of Kiss Good Bye to Ms, the world is a big place and a lot of people have this illness. It’s up to us all to stand together and fight it, raise awareness, not because it’s affected one of our own, but because our humanity thinks, it’s a terrible thing for anyone to have to suffer, let’s do something about it. Thank you Hollyoaks for raising it in popular culture, with young people, we need more. We are a far higher percentage of the population than is reflected.
May 31st 2017 is world MS Day. Time to stand up and be counted, and blow a #kissgoodbyetoms. If everyone on this one day just took a moment to read a little via the #mssociety, in a coffee break or lunch time about what is MS, give it a moment, plant the seed of intrigue, interest that one day may lead to empathy and understanding. Well that’s progress. Then the ending is as open as an MS diagnosis, anything is possible. baby steps to a brave new world where people, really try to understand other people. Let’s do this. Enjoy. x.