Once again World MS Day is here and this year the theme is invisible symptoms.
With a predicted 2.3 million people living with multiple sclerosis (MS) worldwide, thousands of organisations and millions of people are set to come together in their local and online communities to raise awareness of the condition.
No two people experience MS in the same way and many of the symptoms, such as fatigue, pain, problems with bladder and bowel, balance, cognition, heat sensitivity, sensory problems, sexual dysfunction, mental health and sensory issues, are often not recognised or noticed because others simply cannot see them.
That’s why MS-UK is taking part in the World MS Day campaign, coordinated by the MS International Federation, to help raise awareness. In addition, we will be running a survey about hidden MS symptoms. The invaluable information you provide will help inform how we raise awareness of hidden symptoms in the future and we want our campaign to be informed by the voices of people affected by MS. Click here to fill out the survey.
We’ve asked MSer and very talented illustrator Jessie Ace to create some illustrations that show how some people experience situations due to hidden symptoms. These illustrations will be shared with you on MS-UK’s Twitter and Facebook pages all day today. Many of you will be able to relate to the images which depict fatigue, pain and bladder and bowel issues. In a bid to raise awareness and educate people we encourage you to share them along with your own experiences to raise awareness and show the general public the not so obvious symptoms of MS. Don’t forget to tag MS-UK and use the official hashtag #MyInvisibleMS
MSer, Blogger and Influencer Martin Baum discusses his hidden symptoms on World MS Day
This year’s theme for World MS Day is recognising invisible symptoms. This is quite appropriate, given all those inconveniences we have to endure; fatigue, bladder, bowel, sensitivity, pain, clumsiness, slurry speech, vision, memory - dear God, will it never end? Well, no, actually, that’s the crazy mixed up world of Multiple Sclerosis (MS).
After navigating these symptoms for almost 40 years I've learned to live with the cards I've been dealt. If I’m tired, I rest. If my speech slurs, I involve myself with as little conversation as possible and so on. For every problem, there’s a solution, as my late father used to say.
These days I think I cope although I might manage a whole lot better if it wasn’t for the unpredictability of my balance and motor skills. The feeling of knowing I want to walk forward, only to find myself going in the opposite direction is a weird one. It doesn’t happen often but enough, I reckon, to get on Britain’s Got Talent doing a moonwalk dance routine.
Interestingly, social functions, such as a wedding - are guaranteed to bring out the worst in my ineptitude. Perhaps it’s the overwhelming sense of the occasion. Yes, it might be the bride’s big day, but when standing next to my wife, I begin to wildly windmill my arms desperately trying to steady myself it causes some embarrassment.
I don’t drink. Not because of a conflict with the medication I’m on but because I’ve never seen the point. However, given the circumstances of being at a do where alcohol is in copious supply, it’s pointless trying to argue my sobriety. That’s when I feel vulnerable; episodes I cannot control, muddling my words, sometimes quite incoherently. And then overhearing comments from other guests that I’m already “four sheets to the wind”.
Yet I do not - and will not - allow this invisibility of circumstance make life any harder for me than it is. MS has many different symptoms and let’s be honest, it sucks to be at the receiving end of something so rotten and yet, with all sincerity, I won’t allow myself to be a victim. To be that man. Because to be perfectly frank, however bad it is for me, I know it could be a whole lot worse. I could be in a wheelchair, as so many others are. But not me, so I’m grateful for that.
My mantra is to live life and not MS. In other words, I own my multiple sclerosis; it does not own me, which is why World MS Day is so important to me. The more ‘They’ learn then the less I’m presumed to be the local drunk. I know I am worth so much more and come World MS Day maybe others will too.
You can read more of Martin’s MS experiences over on his blog, visit www.martinbaum.co.uk.
World MS Day proved to be a day to remember, with the grand unveiling of our New Pathways video and our special social media Q&A. We also got the chance to speak to a few of the MS community to find out how complementary therapies and research has had an impact on their lives.
I have officially had MS for 8 years, but I experienced symptoms 8 years before that.
Just over 3 years ago, I responded to a request for people to get involved with a new group in our village. The request was put in by a professional aromatherapist who volunteered at Cancer Care. She believed that all people with any chronic condition needed support and access to therapies. She also felt that it was important that therapies should be available locally because there was a lack of facilities in the village.
To cut a long story short, 3 years on I am secretary and 'meeter and greeter' for a growing group that has become really important to those who attend. People drop in for coffee and a chat, and to support each other - there’s no need to put on a brave face! In the group there are professional therapists offering therapies such as reiki, reflexology, Indian head massage and shoulder and back massage - all available for a donation if people wish or can afford to give. There is also trained counsellor available for when life is difficult and a listening therapy is needed. The counsellor is also trained in mindfulness and has run courses. I have attended one myself and found them very helpful.
I can certainly vouch for the benefit of these therapies for me - especially Indian head massage and reiki! I’m not alone - there are others with MS who agree. A friend of mine who was recently bereaved attended a meeting with me and her verdict was "a group like this should be available everywhere!"
Volunteering at the group, as well as benefitting from the therapies, makes the name of the group - Best Life - very apt! It certainly makes it possible for me to live the best life possible with MS.
World MS Day is one of our favourite dates in calendar. It's a time when people around the globe - whether they're doctors, MS nurses, students, or those living with MS - can come together and talk about multiple sclerosis (MS).
For 2018, under the banner #BringingUsCloser, the World MS Day campaign on 30 May is putting MS research underneath the spotlight.
Here's what we'll be doing on the run up to and on the day so you can get involved in the action...
For one day only, Sarah-Jane, the editor of our New Pathways magazine, will be taking over Twitter for a very special Q and A! If you have any burning questions you need to get off your chest - whether it's about recent medical developments in the world of MS, MS studies or research, or complementary therapies - then join us on Twitter on 30 May and make sure to tag us @MSUK6.
Gather around the (digital) campfire! We want to hear stories of your experiences with complementary therapies and MS research. Has cannabis helped ease your symptoms? Do you follow a diet that you'd love to recommend? Perhaps you were involved in a research trial and want to share what you've learned with the world? Let us know! Email Callum with your tales and we'll feature you in our special World MS Day blog!
We've planned a series of special blogs to coincide with World MS Day 2018! Throughout the week and on the day itself, we'll be posting about the latest developments in MS research and showing you how to get involved. Keep your eyes peeled on the MS-UK blog pages so you don't miss out!
Armed with a camera and supported by a rising actress/willing member of the MS-UK team, we've channeled our inner Spielberg to create a one-off World MS Day video! Production is currently under tight-wraps (so no spoilers) but we can't wait to show you the finished product!
On 30 May, under the banner #BringingUsCloser, the global World MS Day campaign is putting multiple sclerosis (MS) research underneath the spotlight. The aim is to unite those involved in research - whether it be scientists or doctors, students or volunteers - and get them talking.
Throughout the month we'll be celebrating by talking about complementary therapies, and what better way to get to the heart of the subject than to speak to those who've sampled these therapies first hand? Whether you've experienced a positive change due to APS therapy or you have a story to share about using mindfulness to manage MS, we want to hear from you!
For one day only, our very own Sarah-Jane will be taking a break from editing our New Pathways magazine to take over our social media. If you have any questions about complementary therapies, MS research, or even the magazine itself, then make sure to put a note in your diary.