Research student and MSer, Hannah Morris shares the findings of a survey to determine the impact of COVID-19 on people living with multiple sclerosis (MS).
As COVID-19 restrictions are gradually being eased and the number of people contracting the disease goes down, we can’t help but reflect on the whirlwind of changes that we have had to endure over the last year and beyond. Not a single person in the world has not been affected by the situation to some extent or another, whether it be directly by catching it, or simply having to change the daily routine to adhere to social distancing protocol regardless of if you have even known anyone to have had COVID-19.
Our article was recently published in the latest edition of the New Pathways magazine, relating to out interesting findings on the experience and impact of COVID-19 on people with multiple sclerosis (MS) and I wanted to use this opportunity to share a summary of findings to those who may not have had a chance to read the article.
Most people, like myself, reported that the COVID-19 pandemic has had a neutral impact on them and in most cases, this was due to a mixture of positive and negative things that have come out of the situation. The negatives people mentioned were mostly due to anxieties as a result of treatment interruption, whether it be related to medication, various therapies, or even just routine appointments. The positives mostly related to being able to use the extra time at home to engage in hobbies, be with family more, or just to rest, something that those of us who suffer with MS fatigue are massively grateful for!
Unfortunately, however, for just over a third of those who took part in the survey, the COVID-19 pandemic has had a negative impact on their mental health causing additional anxieties related to fear of themselves, or loved ones catching COVID-19, or the impact on treatment leaving them vulnerable to having a relapse or progressing. People who are younger, have a progressive diagnosis of MS and have existing psychological symptoms were more likely to report a negative impact.
We believe that these are the subgroup of people with MS that would benefit from additional support, perhaps by drawing upon the things that are working for those who have been managing well at this time. However, as we now see things returning to some level of ‘normal’ it is hoped that the negative impact may be lessened as treatments recommence and the risk of catching COVID-19 decreases.
This is just a summary of the findings, but if you’d like to read more, you can see the full article here: https://rdcu.be/cjTqW
Invitation to the MS community to support the development of a psychological intervention
As we make one final call for people to support in the next step towards developing a psychological intervention for people with MS to bridge a gap that is missing, yet needed for so many, we invite anyone who hasn’t yet to complete our survey here: https://forms.gle/5YTssp4pDVFciYEe9
You can also read more about our research on the topic here: https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/
Ella Shaul explains how multiple sclerosis counselling helped her in so many ways
I decided to start counselling with MS-UK as I had a recent relapse, and have struggled for most of my life with depression, anxiety and mood swings. I have been experiencing multiple sclerosis (MS) symptoms for about 10 years with no diagnosis until two years ago.
I wanted to talk through how I was feeling with someone who would understand, and start to feel that I was making a step forward to feeling better and facing my condition and my depression. I wanted to find an acceptance of my illness.
It was fantastic having Jaz to talk to each week, especially through the difficult times – what with the pandemic and the uncertainty of MS and the world around us.
I had a really good sense of wellbeing after my counselling sessions. I also realised I was enough just being myself, and not focusing on what I can or can't do anymore. I learnt to put my health and wellbeing before other things so I was then able to manage life better. I stopped putting as much pressure on myself to be doing everything.
I found it was easier to ask for help, and be more upfront when I was struggling, instead of just carrying on and making myself feel more unwell. I have been able to stop criticising myself, or if I do, I am able to change the way I’m thinking before it spirals.
Family and friends have noticed a difference in me lately. My son has even said how calm I am and much happier I've been.
I have started to connect with others with MS and it’s been really positive. It's been great knowing people who have the same struggles and discuss the similar tools that we all seem to have to help ourselves.
I would recommend counselling to anyone. At first I was unsure about it all, especially being in lockdown and having to home school – I thought I wouldn't be able to manage it all. I found taking the time out to speak with Jaz so beneficial. It's definitely a non-judgmental, safe place to offload and navigate ways to help yourself. Also I like that you can speak again with your counsellor again after six months to check how everything is going.
MS-UK Counsellor Kerry Trevethick shares her words of advice on how to manage the easing of lockdowns across the UK, as the end of restrictions is in sight and how to be kind to yourself during this time.
Across the UK, lockdown is easing and whilst many people can’t wait for restrictions to be eased and be able to socialise with friends and family again, many others may feel anxious or apprehensive about returning to things we haven’t done for a while and our old routines. Lockdown may have been difficult for many reasons but it provided a level of certainty and clarity on the rules and what we were to expect. However the easing of restrictions is less clear cut, and this can be stressful and anxiety provoking.
There are a range of different emotions that you may be experiencing such as:
It’s important to acknowledge that these feelings are valid and reasonable, and just like it may have taken time to adjust to going into the first lockdown, it may take time for us to adjust to life post-lockdown. It is okay if it takes time to adjust to life changing again.
Some people may find it very difficult in making decisions about how to keep safe now, who they should see or avoid, where should they go or not go - this is normal. For a long time, these decisions were made for us. We may feel that the responsibility of this decision making is too much, but you can take things at your own pace and remember there is no rush to get back to your old routines – you can be in control of how fast things move for you but be wary of avoidance as this can help maintain anxiety.
For some people, life post-lockdown will look very different. Maybe you have been bereaved, lost a job or had a relationship breakdown, and it is okay to feel this grief and there are organisations that can help you.
There are things that we can do to help ourselves manage our feelings as lockdown is eased and these are outlined below:
April is Stress Awareness Month, and we’ve got some useful tips that you can adopt and make your own. Stressful times effect everyone, and each person handles and responds to stress differently. However, it can worsen symptoms of multiple sclerosis (MS) as stress targets the weakest parts of your body physiologically. Understandably, living with MS can be stressful and worrying at times, but talking about the problems and worries you’re facing can help take the weight off your mind and find a solution. At MS-UK, our helpline can assist you with MS-related issues that you may be experiencing, and you can find out more about our helpline here.
Whilst stress is nigh on impossible to avoid completely, it’s important to know how you can manage it and take steps to combat the symptoms before they worsen and effect your health on a more serious level.
Here’s some tools that you can use when stressful times come around
Meditation and mindfulness
Taking some time each day to reconnect with your mind and body can be incredibly helpful when it comes to managing stress. There’s a huge selection of apps you can use, such as Headspace that can guide you through everyday meditation sessions. If mindfulness is something that you’d like to learn more about in depth, you can sign up to join our mindfulness courses. Starting this month, there’s a four week and a nine week course available where you’ll be taught how mindfulness helps you sleep better, become more relaxed and be more aware of your body. Learn more about each course and sign up here.
Renowned for its overall health benefits, yoga is great for the mind and body. MS-UK now offers chair yoga sessions every week that you can take part in via Zoom. With two different sessions available, there’s a range of exercises for people with varying levels of mobility. Each session is 40 minutes, ending with guided meditation. Read more and sign up to our next class here.
Staying active is a great way to combat stress. It releases endorphins, the feel-good hormone, and gives you time to focus on the one thing that you’re doing, taking your mind away from the stressful situation at hand. Going for a run, a walk, or doing a home workout can make all the difference to your day. Regular exercise can be anything that works for you and MS-UK hosts three different exercise sessions twice a week, catering for different levels of mobility. Each month, Alan Pearson, level four exercise coach also holds exercise masterclasses, focusing on an MS-specific symptom and exercises to help.
Resolutions to stress can also be anything creative that you enjoy. Whether that’s reading, painting, drawing, journaling, knitting or sewing, taking the time to concentrate on your beloved hobby or even taking up a new one is important. Making the time for things that make you happy is a regular thing that you can do for everyday stresses. Creative activities allow you to channel your emotions into that and can help you make sense of how you’re feeling too.
Talking about the problems that are causing you stress with someone who can provide solutions, or just be a safe space for you to talk about what’s on your mind is incredibly important. Your mental health is just as important as your physical health and finding a professional who can help you and your needs is vital.
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 email@example.com 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 firstname.lastname@example.org 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.