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 email@example.com 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.
We chat to Grazina Berry, the new CEO of the Overcoming MS charity, on what their message and mission means for people living with MS
I joined the Overcoming MS (OMS) charity as its CEO at the start of July this year. I was drawn to OMS due a personal connection – a close member of the family lives with multiple sclerosis (MS), but also because the evidence-based seven-step recovery programme has immense potential to transform the lives of many at scale.
The programme is based on the work of George Jelinek, Professor and Head of the Neuroepidemiology Unit (NEU) at the University of Melbourne. The NEU investigates the modifiable lifestyle risk factors that predict the progression of MS with a view to refining a preventive and holistic approach to manage the condition.
There is some evidence that a range of environmental factors, such as low levels of sun exposure leading to a lack of vitamin D, a diet high in saturated fat, smoking, and stress play a significant role in MS progression. And so, at the core of the OMS programme are seven steps that can be taken to address those factors, by
Our main message is that thousands of people with MS world-wide have been able to adopt the OMS programme and are living well, and so can you. Our organisation is here to help, guide, inform and empower everyone to make these lifestyle changes and give people with MS real hope that they can live well.
Every person with MS has a remarkable story to tell. For some, their story is full of hope and optimism, for others, it’s one of challenge. This is reflective of the fact that everyone’s life with MS will be very different. I’ve been particularly moved by the story of Abre, a 17-year old boy from South Africa. He lost his sight for six months at the age of just three, and 11 years later, was diagnosed with MS after a major relapse. Abre has been able to change his life, having discovered the OMS programme and is pursuing his dreams. His motto is ‘I have MS, MS does not have me’. This is powerful, inspiring and real.
The challenge for MSers
The world we live in at the moment due to the pandemic is extremely challenging, frightening and uncertain, and this is difficult for everyone. Being faced with MS can add to the challenges in a number of ways, for example
For anyone newly diagnosed
Bearing in mind that advice at the point of diagnosis may not necessarily be welcome while the person takes time to process the news, I would first and foremost offer empathy and understanding. The reality of MS can be tough.
It’s quite common for people at the point of diagnosis to hear lots of ‘cannots’ and the focus on the likely detrimental impact of the condition on the individual’s life. Any advice I would give would focus more on the ‘cans’ and practical things that are within your control. You can take control of certain aspects of your life to help manage the condition, you can look at different options and treatment choices available to you, to help manage your MS, you can reach out to others living with it to share how you feel and seek support. You can live well.
I am very passionate about the community of people with MS that we serve, so my first priority is to build lasting and meaningful connections. It is vitally important that we develop and grow as an organisation, driven and inspired by the needs of people with MS. This means that we will work hard to enable easier access to the OMS programme for every person with MS, build more and better ways for people to connect with others, further boost our digital engagement and support channels. We will work with other organisations and healthcare providers so that every person diagnosed with MS is given the opportunity to make an informed choice as to their treatment pathway. A holistic lifestyle modification programme has to be one of these choices.
Find out more about OMS at www.overcomingms.org
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Martin Baum made a breakthough during last month's heatwave
As an MSer of almost 40 years, I have found there are more questions than answers to living with multiple sclerosis (MS). My late father always used to say there were only solutions, never problems, but that was a time before MS challenged that philosophy, more’s the pity.
Yet while we MSers wait patiently for the cure that we hope will come, eventually, sometimes something does happen to make coexisting with an unwanted cuckoo in the MS nest liveable. While this has never been a perfect arrangement, the recent summer heatwave had been making an awful situation worse.
I recently wrote about enduring not only the summer nights but also having to tolerate the consequences of my body from overheating wihch you can read here. I finished the blog by saying how I had a gel pillow to try and cool my corrupted body thermostat. At the time of writing, however, it was still to be despatched from Amazon so I couldn’t really judge how efficient it was, if at all. I had a lot riding on this.
When it comes to buying ‘things’ I am, by my wife’s own exasperated admission, an advertiser’s dream. The blurb on the box, however, was very promising. ‘A naturally cooling gel pillow with the gel transferring the heat away from the body’. Potentially this was a game changer in my interminable journey with MS.
The room temperature the night I laid the thin blue gel mat on my pillow was nothing short of oppressive, as was my body. But here’s the thing. It worked. Up until that moment, from being sodden at night throughout the heatwave, the beads of sweat began to dissipate. Some nights it took a little longer than others for the gel pad to kick in but, nonetheless, it has every time since.
Night sweats have always been an issue which I’ve had to live with as a natural consequence of having MS. However, there was something about this summer’s heatwave that for me was the tightening of the MS screw that was my breaking point. Something had to be done and mercifully the gel pad came through for me.
Since the blog was published the response to my inbox has told me that this is also an issue for a lot of other MSers which confirms I am not alone. Clearly, while I’ve been waiting all my MS life for a miracle, so have others. Yet, because of the gel pad, within minutes, it was my escape from my own body heat. I hope this will be the same for others, too.
The Vinsani Cool Gel Pad Pillow Gel Inlay costs £6.99 and is available on Amazon. Did you know if you set up Amazon Sile and choose MS-UK as your nominated charity, Amazon will donate money to our charity every time you make a purchase, at no extra costs to you? Visit Amazon Smile
Our helpline has been busy writing and putting together new publications this year to extend our range of Choices booklets. We asked the multiple sclerosis (MS) community for suggested subjects to write about, subjects that you, people affected by MS, wanted to read about and gain more understanding. Cognition was a popular subject.
Cognitive difficulties are experienced by around 50 per cent of people living with MS. Some will only experience mild, more manageable symptoms, whereas others will experience symptoms to a larger degree.
Speaking about cognition and how it can impact a person and those around them can be a difficult subject to discuss. It can be hard to acknowledge that a person’s cognitive abilities are not as they once were.
We wanted to make it easier to understand the different ways in which cognitive difficulties can impact and to provide a wealth of information on how to manage it including tips from those who currently live with the symptom.
You can download our Cognition 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.
All our Choices booklets are sent to our virtual insights panel (VIP) before publishing to gain feedback from people living with or affected by MS. The feedback we received on the Cognition booklet was very positive and included quotes such as:
‘I cannot express how pleased I am that you have brought this leaflet to my attention. I will be highlighting this to other people with MS.’
‘This leaflet is excellent, I feel very strongly that people do not see MS as having cognitive issues only physical ones.’
‘It will be a useful document for those of us (me included) who have issues with cognition.’
It is really helpful for us to receive this feedback to make sure we are producing what is really needed by the MS community. If you would like to join our panel please sign up here.
We will continue to review our current publications and also write new ones when required. We have another new booklet to be published soon too, all about spasms and spasticity. Keep a check on our website for when that comes. If you have any suggestions for other subjects that we are yet to cover please let us know. Email firstname.lastname@example.org We always welcome suggestions.
Laura & Ryan
MS-UK Helpline Click here to download your free Choices booklet