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...
Dean Jeffreys, Online Programmes and Project Manager, explains MS-UK’s new national service and why you should get involved
Hello! I am the newly appointed online programmes and project manager here at MS-UK. I have the pleasure of launching our new and exciting online service for 2021. I have been working at MS-UK for just over three years now, and I will be using this experience to deliver and offer a wide range of online activities for the multiple sclerosis (MS) community.
This year, we will begin by launching our online exercise classes that are accessible for all abilities, and showing you how to get the most out of exercising from home. In addition, we will be starting other new classes and courses that will be the core offering from MS-UK. This includes mindfulness courses, chair yoga sessions, and our peer support service that will help you connect and stay socially active with others.
As we move forward in the year, we will be adding many more activities that you can get involved in. This includes live information sessions on topic areas such as diet and nutrition, symptom management, and complementary therapies. We will also offer alternative activities to those that get you physically active, including sessions on things such as poetry classes and arts and crafts.
As with everything we do at MS-UK, it is community-led, so if you have suggestions for activities you would like to see us hold online, you can email us firstname.lastname@example.org and tell us what activities you would like to see in the future.
Online exercise classes
Starting in January 2021, we have our new online exercise classes, with six classes taking place every week on a Tuesday and Thursday from 11am. The classes are structured in a way that will make them accessible for all.
The classes themselves have been specifically designed to help people stay active at home, and will be delivered by our Exercise Specialist, Alan Pearson. These classes will give you the confidence to manage your wellbeing independently by attending the classes and practising the exercises in your own time.
How the classes are structured
Find out more
Please visit our website page www.ms-uk.org/ms-uk-online to see what we have going on and to book a class. If you have any questions and would like to know more about what we are offering, please email email@example.com or call MS-UK on 01206 226500.
Thank you for reading and I hope to see you in a class with us soon!
In almost 40 years of living the multiple sclerosis (MS) dream, I would be lying if I said that loneliness did not come included as part of the package as if, say, it was some kind of cruel BOGOF deal. But as glib as that sounds, the stats for MSers living with the subsequent consequences of depression are truly alarming.
As many as 50% of MSers are affected by it and 25 percent of those display at least one symptom of post-traumatic stress disorder (PTSD). Although I never admitted at the time to suffering with any kind of mental health issue, on reflection, there is no denying I was just as lonely as I was emotionally isolated.
The loneliness of living with MS represented the worst of times which, in truth, were of my own doing. I was a twenty something when I was first diagnosed and almost immediately began losing my sense of self. It was difficult to cope as I began unconsciously nesting for a life of unhappy solitude which was not a happy place.
I believed nobody understood what even I could not understand which made for a very unhappy mental struggle. Opportunities to enjoy life were not fulfilled. Invitations to mix with friends became fewer. Conversations became sadder. My outlook became more pessimistic. Before diagnosis this was not who I was, but afterwards it was who I became.
I have never referred to myself as a survivor but, and as clichéd as it sounds, it took the love and belief in somebody else to make me aware. To help me recognise and lose my MS baggage that was keeping me in a prolonged state of isolation and loneliness. To stop me obsessing about what I could not control by enjoying instead what I could.
As an MSer, the past represents long periods of self-isolation. Of many years hiding myself away and leaving it to my wife to cover for my absences with lame excuses. If only I had been emotionally stronger – but that was to come later. Just how much I have moved on, however, has been demonstrated by the way I have been able to live with MS in these lockdown times.
Although there have been moments during Coronavirus where it has felt as though I had hit the wall, it is the memory of having already lived a different kind of loneliness that makes me realise that nothing will ever be as lonely again.
This Christmas, help us stop loneliness by donating to our appeal
Living with a long-term health condition like multiple sclerosis (MS) can often cause anxiety. MS-UK's Counsellors have put together some tips for dealing with worries.
1 Befriend your anxiety
Anxiety is a friend and not a foe. Sounds crazy right? Anxiety is a response that is always trying to keep you physically or emotionally safe. We can spend a lot of our time thinking of it as bad but, by understanding anxiety has our health and wellbeing at heart, we can begin to shift that negative association.
2 Listen to the message your anxiety is trying to tell you
If you become anxious every time you think about going out, why is that? Is it that you have a fear of open spaces, or is it that you are concerned about your health? We often react to what we think the anxious feeling is telling us and not the actual message.
3 Build yourself up with positive self-talk
How do you speak to yourself? If like many of us, if you are prone to the occasional internal self-flagellation, you are not alone. Talking negatively to ourselves might feel natural, but the act of speaking negatively has a knock-on effect on our anxiety.
4 Avoid caffeine
This might seem obvious, but caffeine can have a huge effect on anxiety levels. If it is your morning routine, try to change that coffee for another hot drink. You will notice the difference and will still get to stick to your routine.
5 Try mindfulness meditation and muscle relaxation
There are plenty of apps, online tutorials, books and classes to attend. Mindfulness takes your mind away from the ‘what if’s’ of the future and helps you to focus on what is really important – the here and now.
6 Offload night time thoughts
If, like many people, anxiety at night affects your sleep, try having an old fashioned pen and paper by your bed to get the anxious thoughts out there.
7 Try journaling
Especially before bed if sleep is an issue
Deep breathing techniques can be a valuable self-help tool. Start to breathe in through your nose and out through your mouth at a rate that is comfortable for you. Identify a colour that represents peace and calmness. Imagine you are breathing this colour in through your nose. This colour is flooding your body, arteries, veins and organs. At the same time identify a colour that represents your anxiety. Start to breathe this colour out through your mouth. Imagine your anxiety colour being pushed from your body by the peaceful, calming colour.
9 look at cognitive distortions
Our anxiety is fuelled by our thoughts. Imagine your anxiety as a tree. The part of the tree you can see above ground represents your anxiety. The part of the tree that you can’t see, the underground roots, represents your thoughts. It’s the roots that keep your anxiety tree alive. Common thoughts associated with anxiety are
· Prediction – believing we know what the future holds
· Mind reading – believing we know what other people are thinking
· Catastrophising – believing the worst thing will happen
· Shoulds and musts – imposing pressure upon ourselves by saying “I should… I must”
· Critical self – putting ourselves down and blaming ourselves for events which are not our fault
Our thoughts are opinions…very rarely are they based upon facts
10 have ‘worry time’
This is about giving yourself space to ‘worry’ for a specific period of time. Once that time is up, push your thoughts associated to your anxiety to one side
11 see a counsellor
This will help you understand what might be behind some of your anxious thoughts and feelings if you have trouble identifying them for yourself. This might be related to some deep-seated issues including feelings of low self-esteem, specific events in the past or relationships with family members, colleagues or friends.
12 get some fresh air
Reconnect in whichever way is possible to the outdoors and nature so that you can tune back into your five senses. What can you smell, hear, see, taste and touch?
13 put together a ‘mood basket’
Maybe it’s a blanket you can touch, a candle you can stare into or a piece of music that you can listen to at times when things feel a bit too much, or to help you get through a difficult moment.
14 don’t be too hard on yourself
Forgive yourself if you’re finding things tough and not achieving the things that you want to do. Take the time to reflect on your experience and to re-evaluate. Maybe you need to take smaller steps in the direction of your goal once you’re ready to make another attempt, and relish your achievement at every step of the way.
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.