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MSA Trust

3. Looking after your Emotional Health and Wellbeing

Taking your emotional wellbeing as seriously as your physical health can bring great benefits as well as a sense of taking back some control. This section offers a number of ideas that might help. You may want to try several out so you can find what works best for you.

If you are supporting someone with MSA it is equally important to pay attention to your own general health, and you may wish to discuss your own health or wellbeing concerns with your GP. Click here if you wish to go back to the Main Menu.

Care for Your General Wellbeing

There is a close connection between emotional and physical wellbeing which is often underestimated or overlooked. Paying attention to your overall wellbeing is important for both emotional and physical health. Fatigue, insomnia, appetite, and speech difficulties as well as pain and discomfort can all be directly affected by your emotions especially at times of high anxiety. Paying attention to nutrition, getting adequate rest and gentle exercise are all beneficial. The symptoms of MSA can make this more challenging, so do refer to the relevant factsheets on the MSA website.

Maintaining Routine

A sudden or unexpected change in routine can feel stressful, whilst a regular routine can help you to manage anxiety levels. However, provided you plan ahead, it can also boost your wellbeing to try something new from time to time, so try and find a balance between the structure and support of a routine and taking opportunities to do things that you enjoy.

Doing What You Can, When You Can

“I try hard not to put things off one day, hoping I will feel better on another”

Doing what you enjoy, and planning things to look forward to, however large or small, can boost your mood. It is not easy to predict when some pastimes or activities may become harder to enjoy over time, so making the most of what is possible now, rather than putting them off can bring enjoyment as well as new and lasting memories.

Maintaining Friendships

“It has made me feel isolated, inadequate and embarrassed because people feel sorry for me”

It can take energy to maintain friendships, as fatigue or worry may make you reluctant to meet with wider circles of friends or family, which in turn can lead to feelings of isolation or loneliness. Many people with MSA find that eating or drinking with others feels stressful and they avoid seeing friends as a result. If you find that embarrassment about changes to your body such as problems with movement or swallowing is putting you off being around friends, consider what is manageable for you and let friends know. Friends who care about you will not wish to be excluded from your life and will be willing to adapt to your needs so that you can maintain your friendship, just as you would if roles were reversed. Staying connected to those whose company you enjoy can make a big difference to your mood and will benefit your friend’s emotional wellbeing as well as your own.

This is a good website for searching for accessible places including restaurants, hotels, cinemas, toilets etc. – https://www.accessable.co.uk/.

“Nowadays I still use my (IceTrike) bike to get out into the countryside with friends and family walking beside me”.

Noticing Small Pleasures

It is easy to be so busy that small moments of enjoyment get rushed or overlooked. Perhaps take a few moments every day to notice what you have enjoyed. It may be feeling the sun on your face, looking at nature or listening to a favourite piece of music. Whatever your small pleasures are, try to take time to really notice the detail and to enjoy them.

Distraction

While bottling up or completely ignoring painful or difficult feelings is unhelpful, so is spending every minute worrying or thinking about MSA. If you are feeling down or worried it can help to be distracted for a while, to give your mind a break. Whether it is watching a light-hearted film, reading or listening to a book or spending time with people you like, it is important to take regular ‘time out’.

Breathing and Relaxation Techniques

Finding ways to relax and release tension in your mind and body is key to emotional health and you will find that doing so can reduce worrying or fearful thoughts and bring improvements to sleep, appetite and mood.

Most of us have been told at some time or another to ’take a deep breath’ for good reason, as regular breathing helps regulate the nervous system. Practising a simple breathing technique every day can help to reduce feelings of anxiety and relax tension in your chest and throat, which may also help with voice control, and can also be useful as a way of self-calming if you find yourself in a stressful situation. If you are unsure about how or whether to practice breathing techniques do ask your Speech and Language Therapist for advice.

Meditation and Mindfulness

Meditation has been used for centuries as a way to still and clear the mind and gain perspective. If you have practised meditation or perhaps tried it as part of yoga or relaxation classes, you may already know they can help. Or perhaps you worried that you were not ‘doing it right’ because your mind did not switch off, or you fell asleep. There is no ‘right way’ to meditate, however there is lots of evidence that regular practice can help manage pain levels, reduce stress and improve mental health.

Mindfulness is a form of meditation that helps you to stay in the present moment rather than get caught up in worrying thoughts about the future or the past. This is by focussing on your breath and by helping you notice your thoughts and instead of getting caught up in them, bringing your attention gently back to the ‘now’.

It is possible to be mindful in your everyday life, even without practising a full meditation. It may seem odd to start with but if you practice regularly you will begin to notice the benefits of slowing down and focussing on the present. Your Occupational Therapist or Physiotherapist may also be able to suggest some mindfulness or meditation techniques for you to try. Here is one example of a very simple mindful practice:

When you wake up in the morning before doing anything else, just take a moment to fully focus on the present moment. Take a gentle breath and without rushing, take a few moments to notice what you can see from your bed, and see the detail, such as the pattern on your bedding or the colours on the walls, or if you can see out of your window notice the colours and shapes outside.

Now notice what you can hear, maybe a clock is ticking, or the hum of your boiler or birds singing, really focus on what sounds are around you. Smell the air, gently breathing it in and out.

Notice your body sensations, the feel of the bedding or pyjamas on your skin, the sense of your pillow, or mattress and where it touches your body. Some sensations may feel more pleasant than others, try to notice them all.

If you notice your mind wandering, perhaps worrying about a sensation of pain or discomfort, or about the day ahead, just observe how that is affecting you (e.g. making you anxious) and gently guide your attention back to your senses away from your thoughts.

Giving yourself just a few moments to focus on and really notice the present moment using all your sense can give your mind a rest and help you live more in the present than the past or future.

Wellbeing Apps

There are a number of Apps that you can download to your mobile phone, computer, tablet or other device. These include guided mindfulness meditations, visualisation exercises, muscle relaxation and breathing techniques, all of which can bring a sense of calm especially if you practice regularly.

If you have tried or dismissed these before, it may be worthwhile taking some time to see if a new or different one will work for you. More and more people are using these so you may find that friends or family can suggest Apps they find helpful. Some are free of charge and some are by a monthly subscription after a free trial period. Examples include:

  • Buddhify: offers a wide range of mindfulness meditations from four to 30 minutes. There is a small one-off payment for the App, or you can subscribe if you want additional features.
  • Calm: offers a range of mindfulness meditations and visualisations, bedtime stories and soundscapes, The App can be downloaded for free which includes a selection to try out. If you decide you would like a wider selection there is an annual subscription.
  • Cove: is a free NHS App, where you can select and create music to help identify and express feelings day by day as a tool for relaxation.

Expressing Yourself

Expressing your feelings, rather than bottling them up, from the joyful to the painful can help to reduce physical tension and stress. This does not mean that you are expected to dwell endlessly on how you feel, or to share thoughts that you wish to keep private.

There are many ways to express yourself. What works for you will depend partly on your personality and partly on how MSA is currently affecting you. Some examples include:

  • Talking or communicating regularly with someone you trust
  • Creative outlets such as drawing, painting, clay work etc. Some hospices run creative workshops for people living with a life-limiting illness
  • Keeping some form of diary or journal, using words or music
  • Prayer
  • Spending a few moments each day ’scanning’ how you feel and keeping a simple record
  • Drumming, making or listening to music
  • Counselling or psychological therapy sessions

If it is becoming more difficult to communicate in the ways you have been used to, you might try sharing ideas and solutions with others on the HealthUnlocked forum or at MSA Support Groups.

Maintaining Communication

“I get very frustrated because I cannot communicate with other people because of my speech issues”

As it is possible that speaking may become more difficult over time, finding creative and new ways of communicating is going to become very important to you. Feeling confident that you have prepared for this possibility will not take away your grief or frustration at such a change, however it will help you to bear and manage it.

People connect in many ways including body language, sign language, the written word, on apps and communication devices, emoji’s, drawing, art and music. Exploring various methods of communication will ease your path if or when speech becomes too difficult or tiring. These may range from communication devices to simple cards with messages or emojis. If you enjoy being creative, you may wish to prepare drawings or select different pieces of music or objects that will express your emotions or needs best.

Asking younger friends or members of your family to help you try out various tech solutions can bring humour and companionship as you learn together. If you can, ask someone else to learn alongside you and use the same App or device to communicate regularly so that you are on a level playing field. Your Speech and Language Therapist can help you to explore different communication techniques and devices.

The MSA Trust offers a voice banking service, as well as information about communication devices.

Voice banking allows someone to record a short list of phrases (approximately 50) with their own voice while their speech is still reasonably good. A laptop or PC will be needed to do this as the service is accessed online. The recording is then converted digitally to create a personal voice. The voice will be similar to your own, but not a true copy. You will then be able to download your voice and use it to communicate with friends and family via a laptop, tablet, or similar digital device. Your Speech and Language Therapist can assist you with the voice banking process and work with you to record your voice.

Find out more at:

Considering your Future Needs

Preparing for a changing future can be daunting and it is tempting to keep putting off conversations or decisions that may feel uncomfortable. Whilst it can cause anxiety to spend too much time dwelling on the future, making some preparation is likely to bring a sense of control and relief. Although the future may feel uncertain there are some ways that you can plan ahead for example:

  • Learning about practical adaptations that may help you in the future including voice banking and communication equipment, as early as possible
  • Exploring your options for additional care and support, including financial help that may be available
  • If you live alone, planning for a time when this may no longer be feasible and making your wishes known
  • Working out what you want to say to the people you care about, perhaps writing or recording messages or letters or dealing with any ‘unfinished business’ that may be on your mind
  • Putting financial and practical matters in order such as making a Will
  • Making decisions about the kind of care you would like to receive at the end of your life and making sure these are known and recorded.

Our Social Welfare Specialist and MSA Nurse Specialists are available to answer any questions you may have.

The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information in this resource, please contact us and we will do our best to help you.

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