October 28th, 2020
“What is the bravest thing you’ve ever said?” asked the boy.
“Help”, said the horse.
From The Boy, the Mole, the Fox and the Horse by Charlie Mackesy
We are living through very challenging times. The COVID-19 crisis is continuing for much longer than we had hoped or expected and is having a huge impact on all our lives. We are facing colder weather and shorter days, with ongoing uncertainty surrounding the pandemic. For families and individuals living with MND, the challenge presented by the condition may well be an added stress at this time. The need to take positive steps to protect our mental and physical wellbeing during the months ahead has rarely been more urgent.
I was prompted to think about these issues when I really felt this COVID winter start to bite a few weeks ago. It was the Sunday night when a Level 5 lockdown looked imminent. It put me on a train of unhelpful thinking that I found hard to shake. I quickly realised this could be a very long winter if I didn’t get off that train. I decided to revisit some good sources of information around positive mental health which I’ll summarise in this piece. They are simple, evidence-based tips but are not a replacement for talking to your GP or a trusted health professional if you are really struggling or feel you may be clinically depressed.
It’s important to say, first and foremost, that there’s no quick fix for stress and particularly for depression. Anyone that tells you otherwise, is selling you short. Recovery usually involves several elements and often means doing things (such as exercise) that you don’t feel like doing when you’re down. So in that sense, rule number one is that often when you’re feeling down, you need to do what you don’t feel like doing. With exercise, for example, when you’re feeling down bear in mind you usually have to start moving long before you feel like it’s helpful or enjoyable. A summary of some simple actions that can support you in times of stress and low mood are outlined in the table below.
Evidence suggests that many of us do not get enough sleep. We need on average 8 hours. Keeping to a regular routine of bedtime and rising time can help. Avoid alcohol and caffeine, especially in the evening. Wind down for an hour before bed and avoid bright screens/ lights. Keep TVs and phones out of sleep spaces. A cooler room temperature can also help you stay asleep through the night.
Depression sometimes tricks the mind into thinking we’re ill and should avoid others. Take time to connect safely with people you care about. Avoid people you find difficult if you’re feeling down. Reach out to share with someone you know will respond with kindness.
About half an hour of exercise three times a week is ideal to boost mood. Talk to your physio about alternatives if you are a wheelchair user. Exercising outdoors and getting light exposure early in the day (15-30 mins) is especially helpful if you notice your mood is sensitive to seasonal changes and takes a hit in winter.
Overthinking revs up the stress response. When we’re feeling down, the mind goes into an unhelpful thinking pattern called rumination. It’s “dog chasing its tail” thinking. It might be the habit of a lifetime, but it’s worth stopping and noticing your automatic thinking patterns; catching and redirecting unhelpful thinking will pay dividends (see CBT link below).
Unstitching well-worn thinking patterns not an easy thing to do however, and you may well need the support of a good counsellor or therapist. Find someone registered and fully qualified. Try another therapist if the first one you meet is not a good fit for you.
Notice & Create
Keeping a gratitude journal has been shown to nurture a happier mindset. Stop and notice things you grateful for; it could be as simple as clean water, or the love of a pet or family member.
Evidence suggests that creative activity supports wellbeing in lots of ways. Writing, baking, music, knitting. Start a project, however small. You don’t need to be any good at it, you just need to enjoy it.
If you are a person living with MND or are supporting a family member with MND it’s natural to feel all sorts of difficult feelings; loss, frustration, fear, exhaustion … you are having to adjust to an ever-changing condition and with all the added stress of COVID; allow that you might have a down day or even moments of overwhelming distress.
Try meeting yourself at your own door with compassion, saying “This is a moment of suffering. How can I take care of myself in this moment?”
It’s important to stay up to date but it’s equally important to limit exposure to news and situations over which we have limited control (such as the pandemic).
Also, a word of caution on social media; the evidence suggests that it often triggers us to make negative comparisons between ourselves and others. Consider a break from social media if you’re feeling down.
These tips may be useful wellbeing reminders, whether or not you’re feeling low. I want to acknowledge that for each person and family, the impact of living with MND is different. For some, distress is not an issue. For others, feelings of loss, anxiety and even despair are normal and understandable responses to all that MND can bring. I would once again encourage you to talk to your GP or health care professional you trust about getting the right kind of help if you are feeling low, anxious or overwhelmed a lot of the time. The IMNDA are also happy to link you up with a qualified counsellor for a number of sessions, which can be arranged online or over the phone at the moment.
Finally, for family and caregivers of people with MND, I want to draw your attention to groups I am running with colleagues as part of a study. The study is looking at online groups and how they can support caregivers. The groups are structured programmes, one session a week for six to eight weeks, and there are still some places available for the next round. If you are interested and would like to hear more, I have included my contact details below and those of my colleague Caroline Wheeler.
Dr. Ailín O’Dea is a Clinical Psychologist working in Beaumont Hospital as part of Prof. Orla Hardiman’s team. Ailín is involved in a study that looks at the impact of online groups for families and caregivers of people with MND. The groups are structured and run once a week over six to eight weeks. They offer a chance to meet others in a similar position and learn new skills.
Places still available on upcoming group.
Resources and Supports for All
- HSE https://www2.hse.ie/wellbeing/mental-health/covid-19/minding-your-mental-health-during-the-coronavirus-outbreak.html Great mental health advice and links to lots of supports.
- Aware offer online support groups, education/ skills programme and a resilience series with talks from celebrities about their journey with depression https://www.aware.ie/support/
- Get Self Help: a useful mental health website (CBT) with free downloads / worksheets and for working on changing unhelpful thinking https://www.getselfhelp.co.uk/gallery.htm
- Smiling Mind is a fully free meditation app.
- Meditation apps such as Calm and Headspace can be really useful. They charge for a full service but offer some free material (the Breathe Bubble on Calm is a great support for mindful breathing! Go to “more”, “Breathing Exercises” and set your time).
- IMNDA Link up by phone or on the website with any queries around help or support you or your family may be able to access including counselling, MND Specialist Nursing support etc.
Resources for Caregivers
- https://www.hse.ie/eng/services/list/3/carerssupport/caringforyourself/caringforyourself.html Lots of sound advice for caregivers about self-care available on the HSE
- https://familycarers.ie/carers-coffee-club/ These sessions are recorded with experienced professionals who speak to different topics; a good one to start is with Bryan Nolan, a grief and loss specialist who talks about compassionate self-care for carers. There’s lots of other useful information available on the Family Carers Ireland
- National Freephone Careline 1800 24 07 24 (run by Family Carers Ireland). They can connect you with trained counsellors online or over the phone.