The theme for this year’s International Day of People with Disabilities is as unequivocal as it gets, ‘not all disabilities are visible’.
The message is not unique as anyone who is already aware of the Sunflower Lanyard scheme can confirm. But more than that, from a gradual decline in my own circumstances over the last year, I’ve noticed a change in the attitude I experience when I am out and about, and it is this. People are more aware. Kinder. And understanding.
Nowadays, my motor skills sometimes scrape the bottom of the multiple sclerosis (MS) barrel. Messages from the brain to my legs get embarrassingly confused and play merry hell with my centre of gravity. I have to confess that these days it is less than easy to walk a straight line without my feet taking me on a journey to the left or the right of the pavement, whether I want to go or not.
People still stare, sometimes. After all, it’s only human nature. But these days not in a way that makes me feel like I am an exhibit of P. T. Barnum’s circus. In restaurants or coffee shops my knees sometimes struggle to support my body weight when I try to rise from the table.
It’s not the most pleasant of experiences but it happens, of course, it does, but that’s when I endeavour to wrestle control over a situation where I have none at all. Because the MS is mine it’s up to me to reassure the crowd – and I do still have the ability to draw one – that everything is fine because this is not the first time it’s happened to me that day.
To carry an expectation – or even a grudge - against others for not understanding my sometimes muddled speech or incontinent thought process is not who I am. Or at least not anymore. Why make strangers feel uncomfortable? It’s nobody’s fault I have MS and I will tell whoever needs my reassurance that everything is under control. That everything is ‘cool’.
Being an MS blogger has put me in a position of MS privilege. I am at the coalface of disability activity. I am the embodiment of disability action. I no longer have the need to hide my disability behind my cabbage stalk walking stick. I wear my sunflower lanyard as a badge of honour.
I am Martin Baum. I am a proud MSer.
Head on over to the MS-UK Facebook page and like and share our posts for the International Day of People with Disabilities. Help us raise awareness of the hidden symptoms of MS - www.facebook.com/MultipleSclerosisUK/
We have been very busy on the MS-UK Helpline, not only answering all your calls, emails and web chats but writing new publications so you can be as informed as possible when it comes to managing your multiple sclerosis (MS).
Spasms and spasticity is a subject that you, the MS community, asked us to write about. Symptoms that are commonly experienced but not always really known what they are, what the difference is, or the many ways in which they can be managed.
This booklet will really help people to understand these symptoms, what causes them and the effects they can have. The booklet explains a variety of self-management techniques, as well as information on physiotherapy, different treatment options, complementary therapies and more.
We surveyed the MS community about how they deal with their spasms and/or spasticity and we had great feedback. Thank you to those who shared their experiences. We have included a number of quotes within the booklet which really help to bring it to life. We do this with all our booklets because we can all learn from other people’s experiences. What works for one person will almost certainly help another.
You can download our new booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.
To take a look at our full range of Choices booklets visit our website here. If you can’t find what you are looking for then please do contact our helpline and we will be happy to speak to you. We are here to provide unbiased information and professional support. We also provide emotional support should you just need someone to talk to.
We are here to help you to live a happier and healthier life.
Laura and Ryan
Nina Pearce discusses her journey since diagnosis
I know that my multiple sclerosis (MS) probably began when I was 30 and had just had my second child. I had optic neuritis, where there was a big blank splodge in the vision of one of my eyes. It got better with no treatment and no mention of MS. I thought I had had a stroke as the left side of my face was numb.
I wasn’t very sympathetically told I had MS, nor of any treatments. That was left to the fortunately much more understanding MS nurses who told me what type of MS I had and the treatment for pain and spasms I get.
I was OK for about three or four years, then my condition began to develop and my balance got much worse. My dominant left hand developed a tremor, so it was a relief that I retired from teaching in 2014 as I couldn’t write any more – marking books was out of the question.
I used to play the piano, organ, violin, trombone and guitar, but even playing the organ in church can no longer happen. Fortunately my husband retired as a vicar so we moved permanently to the bungalow we bought when I was still teaching. We are in a new area and I don’t have to make a mess of the music in church any more.
I have found MS-UK invaluable for support and help. In spite of COVID, the online gym sessions and the classes such as seated yoga are immensely enjoyable and I would suggest that anyone should take part. If you look on their YouTube channel here you may find more activities to join in with.
My mum has had relapsing remitting MS for about 60 years and counting. She refuses to use a rollator and begrudgingly uses one stick. I grew up having to do more in the home than many of my friends, something I tried to tell my children about as they were growing up!
I need my rollator in the home and to get to the car, or my new mobility scooter and not forgetting my tricycle. We have completed 1,200 miles so far this year. I cannot balance on an ordinary bike anymore. My husband helps push me up the more steep hills, and we try to do four and a half miles a day.
We look after our youngest granddaughter one day a week and I’m very glad that the government has said grandparents can do childcare. This has meant that we can also be on hand to pick up any of our other grandchildren from school, which we enjoy a great deal.
Martin Baum shares his mental health challenges and how the chips on his shoulders were holding him back
I have generally found there to be a fine line between multiple sclerosis (MS) and mental health if only by association, for being filed under ‘I’ for invisible illnesses. In a week that recently brought World Mental Health Day to the fore, I was made aware that men are not great talkers - or should that be sharers? – which struck a chord with me.
Certainly, coming to terms with my own mental health experiences while trying to cope with MS was something, on reflection almost 40 years on, which I feel had had less to do with not talking but more about not listening. Or to be brutally honest, my own problems had as much to do with MS as it did with my own belligerent nature.
For me it was never a case of not wanting to talk about how lousy life was because I never stopped. I had no filter. I was defensive, moody and argumentative. Nobody was understanding - or understanding enough in my view - to appreciate just how awful my life had become. But then, isn’t that the way for anyone with a fragile state of mind and a huge chip on both shoulders?
The ’I’ file soon began to swell with injustice, insecurity and isolation. Yet the lonelier my world was, the more critical of others who wanted to help me I became. I still would not allow myself to be persuaded away from a deafness towards anyone who didn’t agree with me.
Subsequently, and to no great surprise, my mental health began to buckle but, fortunately, it was still strong enough not to break. Just. What saved me from going under was something I heard myself saying to somebody I had become close to that still makes me shudder with shame to this day.
“How are you?” she asked.
“How do you think I am?” I bristled. “I’ve got multiple sclerosis!”
Adding inexcusable and indefensible to the burgeoning ‘I’ file was not something to be proud of.
Shocked by the obvious hurt I’d caused, reducing her to tears by replying in such a cold, cowardly and unnecessary way – and afraid of losing someone who meant so much – was the moment I began to face up to some awful home truths, marking a distinct change in attitude. Taking ownership of my MS, however, would take longer.
But thanks to the power of love, Lizzy forgave and married me and almost 30 years on not only is she still my wife but also, such is the reality of the illness, she is my carer too. The last entry into the ‘I’ file is Inseparable because together we have grown with my MS. We own it, deal with it, live with it. Yes, I still have moments of mental hardship but thanks to Lizzy I’m no longer left to face them alone.
Thank you to everyone in the MS-UK community who got involved with our World Mental Health Day event on Saturday 10 October. We just wanted to bring all the resources together in one handy place, so anyone can access them in the future.
Here's a list of links for the resources. If you would like any support, please get in touch. MS-UK is here for anyone affected by multiple sclerosis (MS) and you can reach us on 0800 783 0518 or by contacting us via our online web form.
This year we commemorated World Mental Health Day by sharing the findings of our Loneliness and Isolation Report. You can find out more about this piece of research by reading the full report below or visiting the web page.
Across the UK, there are a range of mental health charities and organisations offering support and information. Here we have listed some well-known organisations which you may find useful.
For a longer list of organisations that specialise in certain areas, visit the NHS website.
The NHS urgent mental health helplines provide 24-hour advice and support for anyone living in England. You can find a helpline number using the NHS website.
If you feel you or someone else is at risk of serious harm or injury, please call 999.
The Mental Health Foundation aims to help people understand, protect and maintain their mental health. The offer community and peer programmes, undertake research, give advice to people affected by mental health conditions and campaign for change.
Mind provides advice and support to empower anyone experiencing a mental health problem. They also campaign to improve services, raise awareness and promote understanding. They run an Infoline, a Legal Line and produce publications about a wide range of mental health issues.
Across the UK, Mind have a network of independent local Minds that are run by local people, for local people. They provide support like advocacy, counselling, housing advice and more.
Rethink Mental Illness offer a network of 140 local groups and services and they offer expert information via their website. They also campaign to make sure everyone affected by severe mental illness has a good quality of life.
Samaritans offer a 24-hour helpline that anyone can contact if they are struggling with their mental health. You can call them any time, 365 days a year, on 116 123 for free. Samaritans also accept email enquiries, letters and have a self-help app on their website.
SANE provides emotional support, guidance and information to anyone affected by mental illness, including families, friends and carers.
You can read our Choices booklet about MS and mental health online today or order a printed copy.
Saturday 10 October 2020 is World Mental Health Day. Here at MS-UK we are reflecting on the findings of our Loneliness and Isolation Report, hoping to bring these important issues into the light.
We are also sharing mental health resources live throughout the day on our Facebook page (join us on Facebook between 10am - 3pm).
There are a number of health professionals who can help to support you if you are experiencing mental health issues.
This is often a good starting point if you are feeling anxious, having trouble sleeping or beginning to worry about your mental wellbeing. It can be difficult to start this conversation but your GP will be able to offer advice and refer you on to mental health services if they feel it is needed. Your GP may mention the IAPT programme, which stands for 'Improving Access to Psychological Therapies. You can find out more about IAPT on the NHS website.
MS nurses are familiar with multiple sclerosis (MS) in a way that means they can spot signs of low mood or depression, sometimes before you notice them yourself. Talk to your MS nurse if you have any worries and they will be able to signpost you or refer you on to other support.
Counsellors do not offer advice and will not tell you what to do but can help you to talk about your experiences to make it easier to find a way forward. MS is an unpredictable condition and learning to live with this uncertainty can be challenging. Counsellors can help you to explore how MS may be affecting your wellbeing and how you are adapting emotionally.
MS-UK Counselling is a telephone service that is available to anyone with a diagnosis of MS. You can register online for MS-UK Counselling or ask a health professional to refer you. If you would like to try face-to-face counselling, check if your local MS Therapy Centre or local MS Society group offers this. You can also search for a therapist through the BACP website.
You can read our Choices booklet about MS and mental health online today or order a printed copy.
Mobile phone or tablet apps can be really useful for supporting your mental wellbeing, so this World Mental Health Day we take a look at what is available in the app store at the moment.
At MS-UK, we believe in offering people affected by multiple sclerosis (MS) as much information as possible, so you can make your own informed choices. That's why we have listed as many apps as possible, but which ones you try out are up to you. Where we can, we have also included links to the app websites.
You can download any of these apps via Google Play or the apple store straight to your smartphone or tablet.
This app helps people manage their emotions and get a restful nights sleep. It gives options to subscribe for personalised mindfulness meditations as well. The idea behind the app is to find strength and rest through using Aura when you feel stressed or anxious. Visit the Aura website.
This app is all about managing your breathing to reduce stress. It features instructions and practice exercises to help users learn the stress management skill called 'diaphragmatic breathing'.
This is a free app that helps you manage feelings of anxiety and depression by turning negative thoughts into positive ones.
Another free app, Chill Panda measures your heart rate and suggests tasks to suit your state of mind. Visit the Chill Panda website.
This app is all about developing a mindful approach. It includes guided exercises, videos and meditation. Find out more on the Headspace website.
This is a free meditation app, with paid features you can subscribe to as well. Visit the InsightTimer website.
This app has simple learning modules to help you manage fear, anxiety and stress and tackle unhelpful thinking. It is free, but has some in-app purchases as well. Visit the My Possible Self website.
This is Mind's online community, which used to be called Elefriends. It is a forum where you can listen, share and be heard thorugh posting, commenting and private messaging. Visit the Side by Side website
This is an app that offers a free eight-week course to help you manage anxiety and stress, designed to be completed in your own time and at your own pace. You can find out more about the course on the SilverCloud website.
This app lets you track your mood for free and access targeted mindfulness practices. The app suggests you spend 10 minutes a day to help bring more balance into your life. Visit the Smiling Mind website.
This is a free online community, offering digital mental health support for anyone aged 16 and over. You can find out more about the forum on the Togetherall website.
This free app aims to help you take control of your worries, one at a time. It helps you record, manage and solve your worries based on Cognitive Behavioural Therapy (CBT) techniques. Find out more on the WorryTree website.
On Saturday 10 October, MS-UK is posting live on our Facebook page to commemorate World Mental Health Day. This year, the theme for the day is 'mental health for all' and we are sharing the findings of our Loneliness and Isolation Report to highlight how important mental health support is for people affected by multiple sclerosis.
At MS-UK, we believe in listening to people affected by multiple sclerosis (MS). Over the years, we have heard from more and more people who have found that MS impacts their mental health. That's why we launched MS-UK Counselling a few years ago, which is a telephone service available to anyone in the UK who has recieved a diagnosis of MS.
Counselling is a talking therapy. It gives you the opportunity to talk and reflect in a confidential and supportive space with a qualified counsellor who is registered or accredited with the British Association for Counselling and Psychotherapy (BACP). Counsellors do not offer advice or tell you what to do but help you to talk about your experiences to make it easier to find a way forward.
Counsellors help you to explore how MS may be affecting your wellbeing and how you are adapting emotionally.
MS-UK Counselling can support you with:
First of all you will have an assessment with a MS-UK Counsellor, to make sure this service is right for you. If everyone agrees to go ahead, you will have six sessions that are on the same day and time each week. Each session lasts 50 minutes, and can be delivered over the phone or via a video link. All clients must be over 18. At the end you will have the chance to give us feedback, or seek further support if you feel you need it.
Counselling is a safe and non-judgmental space for you to talk about any worries you might have about any aspect of your experience with MS. Any information we take down is kept on our encrypted servers here at MS-UK and is not passed on to any third parties unless you ask us to. We will only break confidentiality in the event of a safeguarding issue which would mean any form of harm to either you or someone else.
You can register online using our web form, or give us a call on 0800 783 0518 and we can support you to register for MS-UK Counselling.
MS-UK is piloting single session therapy as a response to the anxieties and concerns that MSers have shared with us about the impact of COVID-19. There are currently only 20 spaces available for this first pilot so book quickly, but should this pilot be successful we would look to continue to offer it as a regular service.
What is Single Session Therapy?
Single session therapy is a focussed one-off session with an MS-UK counsellor who uses their counselling skills to listen and help you find a way forward with a specific MS-related issue that is impacting on your daily life right now. The session will be conducted either by telephone or Zoom to ensure the service is accessible UK wide.
How do I sign up?
If you want to find out more about this pilot then please email Diana Crowe, Head of Services at firstname.lastname@example.org who will send you more information about how to take part. Please note that you must have an MS diagnosis to qualify for this pilot.
About MS-UK Counselling
Counselling is a talking therapy. It gives you the opportunity to talk and reflect in a confidential and supportive space with a qualified counsellor who is registered or accredited with the British Association for Counselling and Psychotherapy (BACP). MS-UK is a BACP organisational member and our number is 275169.
Counsellors do not offer advice or tell you what to do but help you to talk about your experiences to make it easier to find a way forward.
Your mental health and emotional wellbeing are linked to your experience of MS so our counsellors have had training about living with MS.
Counsellors help you to explore how the pandemic and MS may be affecting your wellbeing and how you are adapting emotionally.