On Wednesday 17 February 2021 we celebrated Random Acts of Kindness Day. To commemorate the day, we asked the multiple sclerosis (MS) community to share your stories. Here's what you said...
'This random act of kindness took place long before the pandemic - 40 years ago - but due to my MS and memory loss - I now experience this random act of kindness of the event through old photos I found while cleaning for lack of anything else to do during this pandemic. It sounds like a sad story but had a happy ending due to a wonderful doctor who cared.
'My wedding was all planned but my mother was was very ill and the doctor cared - he told us how much it meant to her and us for her to be there and helped us move up the wedding to the hospital chapel and all was arranged - even had music!
'Mom was there, all dressed up, guests too - doctor came too - dressed up - Mom died 10 days later. I am still married 40 years later to my hero...and trying to pass kindness forward.'
'After a long day in London, I used the Underground to catch my connection north. I had to change lines at some point, and the distance between stations was much greater than I’d anticipated. The further I walked, the more bent my posture became, until I was literally using the surface of walls to help me keep upright.
'I was passed by hundreds of racing commuters, possibly thinking I was drunk. I staggered on for a few more yards, following signs for the lift. When it appeared out of order however, I simply gave up, and slumped to the floor, wearing my best suit. Again, I was passed by many people, and at this stage I was feeling like a well-dressed busker and tearful!
'Amazingly, a man returned carrying drinks and a cupcake from Costa. To give me the refreshments, he must have passed me, exited the underground station, entered a Costa store to buy the items, and then retraced his steps, going against the walking traffic. I thanked him profusely after initially refusing his offer, and asked for his details in order that I could thank him properly. He refused, left me with the refreshments, and quickly disappeared again. I was speechless.'
'As two of my family members lived and died with MS prior to my diagnosis, I was well aware of their management techniques. Following my diagnosis, I declared instantly to doctors and nurses in the hospital that I was going on a diet avoiding saturated fats and milk.
'One day, all the patients were given their breakfasts of cheese sandwiches on the morning of my kindness day - so I left mine untouched and went back to sleep. Upon waking up, I saw a thick salami sandwich on my bed stand - although the kitchen did not have any dietary replacements that day.
'Other patients told me that a night nurse left me with her meal before going home. She did not wake me up, but left me her meal after a night 12 hour shift looking after patients. At the time, I was the only one at the ward being able to slowly wash myself and go to toilet. All other patients needed non stop care through the night and day. She must have been exhausted, hungry and not in a mood to "cure" MS by avoidance of cheese! Still, she decided that morning to be kind, supportive and selfless - saying nothing in the process.
'I will never forget such kindness in my time of sudden schock...please join me in wishing every blessing to "my" nurse.'
Thank you to everyone who shared your positive stories with us for the day and tuned in to our Facebook Live event.
You can find out more about why we celebrate kindness by visiting our Loneliness and Isolation Report webpage.
To commemorate Random Acts of Kindness Day 2021, we have designed a pack of postcards to help spread kindness far and wide.
In 2019, we began to research the issues of loneliness and isolation in the multiple sclerosis (MS) community. We found that 71 per cent of people affected by MS in the UK experience these issues, or have done in the past.
Our findings from this research also told us that the MS community believes in the power of kindness and friendship, and we should be sharing this message widely. So, whenever we have a chance to do this, we will!
There are many organisations in the world promoting kindness. Here are some we have found - do let us know if you think of any more we can add, just contact us with your suggestions...
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/
When I was diagnosed with multiple sclerosis (MS) at 23, I was so scared and lonely and in quite a dark place. It was a huge deal for me – I’d only been married for a year and was at the beginning of my career as a nurse. My parents took it very badly, and it was a big, big change for me.
Early on in my journey, I was prescribed antidepressants. They help keep me on an even keel.
Having MS, there are times when I feel very lonely. It doesn’t matter how many people I have around me, I can still feel very alone. Unless they have it too, your loved ones and friends don’t really understand what you’re going through.
Old friends worry about meeting up with me. They wonder how bad I will be – whether I’ll be able to walk or whether I’ll be in a wheelchair.
I do spend a lot of time at home alone, but my little dog helps me enormously. She’s like my shadow and my best friend. Having her, with her unconditional love, has helped me so much. Pets help so much when you’re lonely.
Knowing the MS-UK Helpline is there when I need to talk makes me feel supported.
This year MS-UK's Christmas appeal is raising money to support our helpline, which is here to support people living with MS when they need it most. Our research shows that 71% of people living with MS feel lonely or isolated because of their condition. By working together with MS-UK, you can help these people feel less alone this Christmas.
Diana Crowe, Head of Services at MS-UK, explains all for Safeguarding Adults Week 2020
We all have a right to a life that is free from abuse and safeguarding is everyone’s business. This week it is national safeguarding adults week and as Head of Services I thought I would take some time to talk about this as it is part of my role.
The world has changed significantly for all us since March 2020 and the first national lockdown due to Covid-19 and it has impacted on all of us in different ways. Many of our clients have been struggling with the loneliness and isolation caused by shielding and living with the worry of catching the virus. For others it may have impacted on finances, relationships and family life which can create tension and difficulties that increase risk of harm.
MS-UK has a national helpline and a national counselling service which are both delivered by telephone, video call or email. Therefore, it is my role to ensure that all of my staff know how to recognise the signs of abuse or neglect and understand what actions they need to take in order to prevent harm.
So on a day-to-day basis, if one of my members of staff had concerns about someone they had been working with they would let that individual know that were going to speak with me or another senior manager to see if any action needs to be taken in order to keep them or someone else safe. It is always best practice to give the individual a chance to express their wishes and what they would like to happen but in some circumstances we have to take action in order to prevent any immediate risk of harm.
Dealing with safeguarding matters can be challenging for all involved so we make sure that we support everyone throughout the process. Our safeguarding adult policy is on our website so anyone that accesses our services understand the responsibilities we have and to provide confidence and assurances to those we work with. We always have the best interests of the individual at the heart of what we do and will always keep them informed of our actions where possible. The clients’ local Adult Social Services guide all of our decisions and actions.
Our vision at MS-UK is a world where people affected by multiple sclerosis (MS) live happier and healthier lives. Our values include providing professional high quality services by knowledgeable staff, ensuring that the people we support are treated fairly, with respect, care and compassion. Adult safeguarding is at the heart of all we do to ensure that we can make a difference to those affected by MS.
There are approximately 196,000 charities in the UK and just over 1 million trustees. Trustees are the people in charge of a charity. They help to make the UK the sixth most giving country in the world.
They play a vital role, volunteering their time and working together to make important decisions about their charity’s work.
This week is Trustees’ Week (2-6 November), an annual event which showcases the great work trustees do and highlight opportunities for people from all walks of life to get involved and make a difference.
At MS-UK our dedicated Board of Trustees works closely with the MS-UK management team to develop and ensure the effective implementation of our Strategic Plan. All of our trustees come from different backgrounds and bring with them their career and life experience to help grow and progress the charity. You can find out more about our trustees here.
How do I become a trustee?
If you’ve ever thought about becoming a trustee there are many charities across the UK with vacancies, take a look www.trusteesweek.org/find/.
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.