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.
MSer and illustrator Jessie Ace discusses how MS has changed her life for the better I remember the day I was diagnosed with a stroke like it was yesterday.
Yes, you read that right, a ‘stroke’. That’s what the doctors originally thought I had.
I was only 22 at the time and had been working non-stop to complete my university degree. I’d also been working hard setting up a business for when I left because I was worried I wouldn’t find a job.
I had huge plans for when I left university. I was going to start my brand new career as an illustrator! Designing anything that could hold a pattern or character. I had big dreams of everyone owning something with one of my designs on. I’d managed to get an agent to represent me at major trade shows and I even had a book deal while I was still at university! I was so excited. All I needed to do was to finish university and start.
But life never quite goes as you expect it to does it?
The morning of my last day at university - the very last day - I didn’t quite feel ‘right’. I’d been working to exhaustion most days, so the fact that the left side of my body had gone numb and wobbly sort of made sense to me. It was just stress, right?
It was still numb and weird after a week so I begrudgingly dragged myself to my GP’s office for an appointment. Nothing could be wrong though, I was 22. I was perfectly healthy and never, ever got sick, I was just exhausted and stressed.
When the doctor announced she thought I’d had a stroke I thought she was crazy but at the same time I kind of thought actually it made sense, plus it meant it had already happened right? So it couldn’t get worse.
It got worse.
After coming out of hospital a week later with a diagnosis of Multiple Sclerosis (MS) I thought my life was literally over.
My illustration business I’d painstakingly built up had been taken away overnight as I now had no strength in my hand to even hold a pencil.
My university degree that I’d poured everything into for the last three years felt invalid.
Everything I knew was gone.
My life had gone.
I was gone.
It took a good few years to accept my diagnosis. A good few years of feeling sorry for myself, blaming myself for not looking after myself as much as I should. Constantly complaining, “Why me?!” or “What did I do to deserve this?” People that I was friends with no longer wanted to know me. They didn’t understand what MS was.
“What do I do now?” I thought.
I’ve got to turn MS into something good.
I decided to use it to help others understand the condition and help inspire people to know that their life is not over, in fact it’s only just beginning.
I have far more of an appreciation for life now. I appreciate how good it feels to type with two hands when I can and to be able to take my dog for a long walk in the sunny woodland. Listening to the birds chirping in the trees and the cool air of early morning against my face.
Life is truly amazing.
I’ve learnt that anything that feels painful or scary is a wakeup call. A chance to analyse your attitudes towards life and the relationships that you’ve made. I believe it gives you a new perspective, a new purpose. An opportunity to wake up from the superficiality of the person you were before and take note of what really matters in the world. Everyone is fighting a battle that no one else knows about.
I signed up to the Etape Loch Ness cycle event last September. A close friend had decided that we would become the 'Invernairne Try Team', a team of four who would undertake challenges to test ourselves and keep fit. The initial plan was to try a triathlon, but somehow we ended up entering the Etape Loch Ness, a 65-mile cycle event that starts and finishes in Inverness, and which takes 5,600 cyclists around Loch Ness, offering spectacular views and scenery alongside some physically and mentally challenging climbs. I decided that if I was going to attempt it, I should try to raise money for a charitable cause and I chose MS-UK. Thankfully, deciding to ride for a cause kept me going to the finish line.
My mother was diagnosed with multiple sclerosis (MS) in 1973 when I was ten years old. Back then there was little in the way of help and support and life wasn’t easy for my mum or us as a family. Sadly my brother has recently been diagnosed with MS but hopefully, with advances in research, medication, therapy, and support, his experience will be a lot more positive. I also think that by fundraising it has brought awareness to the fact that my brother has the condition and recognition of the issues faced by those diagnosed with what is often a misunderstood condition.
I chose MS-UK because they support and encourage those with MS to continue to live life and challenge themselves. They also offer invaluable support through the MS-UK Helpline, MS-UK Counselling and the excellent magazine, New Pathways. I feel that if we previously had access to some of the services offered by MS-UK, life for us a family might have been a little easier.
I think the biggest challenge was the fact that neither the rest of my team or I were experienced cyclists. We were all quite fit for our respective ages but most of our training over the winter had to be indoors, as with short days and icy mornings we couldn’t really get out on the bikes until March. We also had the challenge of the five-mile hill hanging over us, and all we could do was push ourselves on indoor bikes with no idea what lay in store.
When we finally hit the road on the day, we had survived a few crashes and miscommunications, learned how to change a bike tyre, and stocked up with jelly beans to keep us going, but the furthest we had cycled was 40 miles. Thankfully the weather was kind and we all managed to complete it without any disasters. My indoor training really paid off and I am delighted to report that I finished in the middle of the pack and managed to stay on my bike up the five-mile climb. It was tough though and I was so relieved to hear the piper who welcomes riders to the top. Never has the sound of bagpipes been so welcome!
From then on it was almost all downhill, with a few nasty but shorter climbs thrown in to keep you focused. Thankfully the road home was dotted with fabulous volunteers - their encouragement was invaluable to seeing us all home.
Would I do it again? Well, I did it enjoy it and I’ve registered interest for next year. I don’t have to make my mind up until September, but it would be a shame not to tackle it again with a bit more training and experience. However, having said that, we’ve still got a triathlon to attempt and as I’m a rubbish swimmer, the next challenge may have to be in the swimming pool. To be honest, I think I’d rather tackle that hill again!
I have always felt that it is important to challenge yourself, and while I am fortunate to be fit and healthy enough to take on new challenges, I’ll continue to try new things. Hopefully, the money raised, with the help of MS-UK, will encourage those with MS to not give up, find ways to make the most of life and overcome their personal challenges.
For fundraising, I used JustGiving, mainly because it makes it easy to share your page on social media and enables you to post updates to keep your donors informed. It also deals with Gift Aid, which added another £500 to my fund. Emailing the link to my friends and family and sharing updates on Facebook was invaluable. I also feel that it is essential to thank your donors personally and I took time to thank them individually on Facebook and by email if I had their email address.
If you would like to try your hand at fundraising for MS-UK, contact Lucy on 01206 226 500, or email email@example.com.
Over the past year we have been following the progress of five people affected by multiple sclerosis (MS) and capturing, in their own words, an insight into what it is like to live each day with the condition.
These eye-opening stories were recently published in our ‘A year in the life of…’ booklet, a project designed to explore the real-life experiences of MS through topics such as independence, mental health and physical wellbeing and to show how the funding from the National Lottery Community Fund has had a positive impact on the work of our Josephs Court wellness centre.
To celebrate the publication of this booklet, we were recently visited by Jess Leonard, Funding Officer of the National Lottery Community Fund, who met the incredible people behind the case study over coffee and a slice or two of cake.
Diana Crowe, Head of Services said, ‘It was great for our clients who participated in our case study project to meet Jess.
‘It gave them an opportunity to discuss how much they have enjoyed writing for MS-UK and reflecting on their own experiences.
‘Jess really enjoyed the afternoon meeting some of those who were benefiting from the funding awarded to MS-UK’s Josephs Court.’
From Diana and Dean, and the rest of the MS-UK team, we want to thank Jess for visiting us last week.
MS-UK will be closed on the bank holiday following this weekend, so just to remind you of the times:
Friday 24 May - open from 9am - 5pm
Monday 27 May - closed
Thank you all and do have a lovely bank holiday!
Best wishes, The MS-UK team
On Sunday March 23, more than four thousand people took to the streets of Colchester to be part of the towns’ biggest community sporting event the year, the Colchester Half Marathon.
The event is organised by a group of volunteers from Colchester Colne Round Table who work tirelessly throughout the year to stage this fantastic event. All the proceeds from the race are shared between local charities.
This year MS-UK were lucky enough to have been chosen as the main charity beneficiary for the event. Brain injury charity Headway Essex were the other charity partners. MS-UK worked closely with the organisers and recruited a team of over 100 volunteers and 50 runners to support the event.
Taking on a half marathon is brave enough, but not enough of a challenge for MS-UK’s long term supporter Clare Thompson and her running buddy Dave, who completed the course wearing an MS-UK branded purple tyre!
It was a great day, everyone had loads of fun and the Great British weather was exceptionally kind to us too.
This week MS-UK received a very handsome donation of £48,750 from the event. Jill Purcell, MS-UK’s Fundraising Manager said 'We are delighted to receive such a fantastic sum of money raised from the event. The amount is equivalent to MS-UK being able to provide specialised supervised exercise sessions to more than 50 clients for a whole year at Josephs Court, our wellness centre in Colchester. Thank you to the Colchester Half Marathon committee, and all runners and volunteers for their generous support. It is always a great event which significantly benefits the local community too'.
Every penny raised from the Colchester Half Marathon helps MS-UK support even more people affected by multiple sclerosis (MS), by raising awareness of the condition and offering services like our helpline, MS-UK Counselling and New Pathways magazine.
Thank you so much to all involved and our amazing #TeamPurple runners!
This week, 13-19 May, is Mental Health Awareness week. People affected by MS can often experience associating effects on their mental health too. Sometimes it can be difficult to understand what somebody means when they talk about mental health issues, and this is why Mental Health Awareness week exists. They aim to make discussions of mental health clearer and a foundation stronger support networks. By supporting Mental Health Awareness week, we can pave the way for greater openness when it comes to mental health, and strive to help those that are further affected by other conditions too.
We can all experience guilt, like any other emotion within our daily lives. Some people experience it occasionally, whilst others may experience it more frequently. Guilt can be a difficult emotion to identify and can often be disguised by feelings of anger or resentment. The feeling can often rear its head when we identify and perceive we have caused ourselves or somebody else a wrongdoing or harm. Guilt can leave us feeling pretty rubbish!
People living with a long-term health condition can experience the grieving process, which is not linked to the death of a loved one. Guilt can be a part of the grieving process where the person is seeking to try and find the answers to their questions of why something is happening to them and the impact that has on others.
People living with MS may experience this feeling for a number of reasons, some of which are discussed below
Most people will experience feelings of guilt at some point in their life. However, if you notice that you are constantly apologising to yourself or others this could be a telling sign that you may be experiencing feelings of guilt. Communication is key to challenging these feelings. Communicating with somebody you trust such as a family member, friend, colleague or health professional can help you to start alleviating these feelings.
If we do not recognise and process feelings of guilt this can potentially affect our mental health and wellbeing. Sometimes people may want to talk with an experienced mental health professional about their feelings of guilt in a safe, supportive and non-judgemental setting. This could be through:
Counselling or Cognitive Behavioural Therapy (CBT)
This can provide space for the person to explore and examine their thoughts and feelings. Counselling can help the person identify new ways of thinking and behaving which can improve the way they feel.
Relationship or family therapy
The whole family may want to access counselling. This may help family members understand when it might be MS that they perceive to be the ‘problem’ or ‘worry’ and when it is something else.
Mindfulness and meditation
Can help the person to be aware of the present moment where they can calmly recognise and accept their thoughts, feelings and bodily sensations without judgement. This can be a very powerful tool in helping to alleviate feelings of guilt.
You may have read this article and relate to some of what was shared. Others may be thinking that it isn’t relevant at all. As individuals we respond differently to feelings of guilt but what is important to remember is that one of the best ways to cope with feelings of guilt is to try and be as compassionate towards yourself as you would be to somebody else.
This extract was taken from issue 113 of New Pathways magazine, the MS magazine for people with MS, by people with MS.
This week is National Vegetarian Week, and whether you’re a veggie looking to give something new a go or completely new to vegetarian eating, we have a simple but scrumptious recipe for you to try! We present you with…
Butternut Mac & Cheese, a recipe featured from MOB Kitchen: Feed 4 or more for under £10, by Ben Lebus, published by Pavilion Books. The veggie version of this book, MOB Veggie, is going to be realeased on 4 July 2019.
‘The creamiest mac ‘n’ cheese in the land. Butternut squash brings the sweetness. This is an absolute worldy of an M’N’C!’
Serves 4, 45 minutes preparation and cooking time.
I wanted to invite you to complete our survey which launched today about loneliness and isolation.
Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.
We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it.
The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.
Thank you so much for your contribution,
Head of Services