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.
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.
To commemorate World Mental Health Day, all week we are sharing information and resources about mental health therapies and support available.
So, what is Cognitive behavioural therapy, or 'CBT' as it is often called?
CBT is a talking therapy that helps people manage their immediate problems by changing the way they think and behave. This may sound very difficult, yet CBT aims to break problems down into small, bitesize chunks so you can deal with them better. The therapy is rooted in the idea that our emotional and physical feelings are linked, so negative thoughts can feel very overwhelming and have a big impact on your day-to-day life.
CBT helps you to change negative patterns. Unlike some more traditional talking therapies, CBT looks at the here and now, rather than focusing on your past.
Key aspects of CBT:
Cognitive behavioural therapy is highly structured and can be quite short term (a course of treatment may last between 5 and 20 sessions), but it is important to remember that it is not suitable for everyone. It may not suit you if you need to look more at your past experiences like your childhood.
If you are interested in trying CBT, you can speak to your GP who will be able to guide you about the different therapies available and make a referral on your behalf. You can also refer yourself directly via the NHS Improving Access to Psychological Therapies service (IAPT).
We are here to support you. You can contact the MS-UK Helpline either by calling us for free on 0800 783 0518 or by contacting us digitally. You can also register for MS-UK Counselling, which offers talking therapy for anyone with a diagnosis of multiple sclerosis (MS).
On Saturday 10 October 2020, MS-UK will be sharing our Loneliness and Isolation report to encourage mental health for all, including people affected by MS.
MSer and research student Hannah Morris discusses the impact of living under the threat of uncertainty can have, and how to overcome it
The threat of uncertainty can be paralysing. It can pose a huge challenge to us being who we want to be or achieving what we want to, whether it be in terms of our careers and outside relationships, or in the home with our family and friends.
Any type of health condition can produce a threat in the short term, whether financially, socially or otherwise. Longer-term illness comes with a longer-term threat. If there is the hope of a cure to counter our fear, the psychological burden is lessened in the knowledge that there is an end in sight. With a chronic condition such as multiple sclerosis (MS), which I have, the threat is never-ending. The feeling may go up and down, but I find it is always a constant.
The psychological effect of threat results in feelings of anxiety, which is exhibited in a physiological reaction. With short-term threat this is not a problem it serves as a protection, as these physiological changes support whichever ever approach is taken to escape or fight the threat. However, with consistent long-term exposure to threat, anyone’s health can be impacted. For people who have compromised immune systems, like those of us living with MS, this is something that we need to be more aware of as it can have detrimental effects to our MS status, potentially triggering the onset of a new symptom or relapse.
I personally am someone who feels particularly anxious about change of routine which is why I had a really hard time adjusting at the beginning of the COVID-19 crisis. I was always used to the routine of school runs and having that space to myself during the day. Then COVID-19 happened and upset my routine and my anxieties were all over the place as I tried to establish a new routine and be OK with it. I know from experience that this anxiety is not good for my MS so had to find ways to manage myself.
I know only too well that the threat of symptoms arising any time can be psychologically disabling and may potentially be one of the underlying causes of anxiety in MS. According to a recent article in the Journal of Neurological Science, anxiety is disproportionately higher in the MS population compared to the general population, or even other chronic illness population. Despite this, there is a paucity of interventions targeting anxiety in MS. However, there are many ways in which threat and the resulting anxiety can be managed.
How to manage threat and anxiety
Change your perception. Be realistic about the chances of your fears coming to light. Instead of ruminating over the ‘what ifs’, I make a plan in case the worst does come to pass. This will eliminate the need to ruminate further as you are now prepared.
Counter the psychological effect. As mentioned previously, if there is the hope of a cure, this neutralises the psychological experience of threat. We know that there is no cure for MS and some may say it’s unrealistic to live in hope of a cure too which could lead to further distress.
However, there are other ways that people with MS can find hope by focusing on shorter-term goals and/or exploring alternative ways to attain goals. As an optimist, if I have a seemingly unattainable goal, you’ll find me seeking alternative ways to achieve it that are more compatible with my abilities.
For example, I’d long since dreamt of doing a PhD but for a long while also didn’t think it possible due to MS-related obstacles that would potentially make it difficult to maintain attention whilst also remaining alert. As anyone with MS will know, this is something that is not always possible, especially if it is expected to follow a set schedule, when MS never seems to like to adhere to any schedule and instead strikes when it pleases.
After a lot of head-scratching and searching, I finally came across the perfect opportunity to complete my PhD by distance. It has allowed a great amount of flexibility that lets me work with my symptoms rather than fighting against them. If I’m feeling fatigued, I can take a break when I need, or, my most common issue, if I’m experiencing a bit of ‘cogfog’, I can set the article aside and get back to it when my brain is ready to comply and I’m ready to take a deep breath and face it with patience.
Counter the physiological response. The physiological response to threat can easily be reversed through the use of relaxation techniques that aim to reduce levels of arousal by reducing respiration, heart rates and blood pressure. Common techniques include breathing techniques, progressive muscle relaxation, visualisation and mindfully paying attention to one’s surroundings whether it be directly in the body, or the physical surroundings, making use of all the senses.
I’m very fortunate to live in the countryside so this is one of my ‘go-to’ techniques when I can feel my anxieties coming on. I like to go outside and experience my senses whilst walking if possible, but often the weather doesn’t allow for that, so I’m generally quite content to take myself to a window, gaze out and just embrace my senses. I tend to experience sensory overload a lot so I find this approach is helpful for that too. I’ve tried to make this practice a part of my new routine to help keep on top of my anxieties.
It might be that you generally favour one approach over the other or find that certain ones are more appropriate at different times. Either way, a process of trial and error will determine the most effective approach for each individual to reduce the level of threat and resultant anxiety.
As part of my PhD research, I am hoping to support others with MS and invite you to join me in this endeavour by having your say in what would help you.
If you are happy to help out then you can complete this online survey here by clicking the ‘start’ button at the bottom of the page. https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/
Or you can go directly to the survey here https://forms.gle/5YTssp4pDVFciYEe9
MS-UK’s Head of Services, Diana Crowe reflects upon its latest report which gives valuable insight into the loneliness and isolation people living with multiple sclerosis can experience
Much of my time last year was spent exploring how people affected by multiple sclerosis (MS) experience loneliness and isolation and my findings are shared in our report that we have published this week. I don’t wish to repeat in this blog what is said in the report but rather reflect on my experiences whilst working on this project.
When I first started to scope out the work I realised that I needed to squirrel myself away at home one day a week to give me the time and space to research and read all of the amazing reports that had already been published and understand the landscape. This was a luxury to have this time (before we were all forced to work at home – thank you COVID-19!) but I soon discovered the irony of working on a project that was making me feel a little lonely and isolated from my colleagues.
As a community-led organisation, the next step was to reach out to the MS community to hear about their lived experiences. I always love this part of my job because it keeps me grounded and drives the passion that I have to really make a difference. We started by conducting an online survey which gave us a really good starting point and enabled us to drill down further into the challenges and barriers that the MS community were facing.
In the late summer, my colleague and I travelled the country on one plane, many trains and automobiles! We were so grateful to the MS Therapy Centres across the UK that opened their doors to us and enabled us to facilitate focus groups. The dynamics were different in each group – one was very emotional as people shared their experiences and tissues were needed and in others, we heard how some people used humour to deal with the challenges they faced. For example, someone pulled up their trouser leg to reveal a catheter bag and exclaimed ‘this is not a fashion accessory you know!’ We conducted telephone interviews with those we could not meet face to face and it was such a privilege to take this time and listen. Many cups of tea and cakes later we had a rich insight that has shaped the next steps you see in this report.
It has been a long time in the making and we had every intention of launching this report back in March but then we were all forced into isolation (thanks again COVID-19!) and we have all faced so many challenges both personally and professionally and it certainly did not seem appropriate at that moment.
However, this week is Loneliness Awareness Week and we felt this was the right time to share our work. This report and the recommendations within, build upon the work we are already doing and gives us a platform to develop new initiatives. This is just the beginning of what I hope will be an ongoing conversation and I encourage organisations to get in touch to talk about how we can build partnerships, learn from each other and keep this conversation alive. Only by working together can we tackle loneliness and isolation in the MS community.