This week is Mental Health Awareness Week – a good time to recognise what a challenging time this is for people affected by mitochondrial diseases.
The families and young people we support have been in lockdown for many weeks now, and that takes its toll on mental wellbeing. Adding to that, there is a growing sense of uncertainty around the length of shielding guidelines, changes to social distancing, and what school, work and home will look like in the next few weeks and beyond. This lack of a clear way ahead will inevitably have an impact on those with the disease and those in a caring role.
Our partners at the Wellcome Centre for Mitochondrial Research in Newcastle have shared some useful guidance, focussing on the theme of ‘kindness’. Here at The Lily Foundation we wanted to add to this by recognising the importance of kindness, both in our everyday lives and as a carer to someone affected by mito.
As you read the guidance below, we hope that you can draw strength from knowing that you are part of a unique community. We are enduring these uncertainties and challenges together, and will navigate them together as we have in the past. Try to think about the strength you’ve already shown, and how this strength can help you through the current challenges (including feeling safe enough to say just how hard it feels). We are here for you and we hope you can be there for each other. This is even more relevant as the current storyline unfolding on Coronation Street puts mito in the public spotlight.
It is common for carers to suffer from a sense of guilt. Now more than ever it's important to notice this, and recognise that self-care is not a personal indulgence; rather, it is a vital part of your work. Below are some recommendations on things you can do that are not only kind to yourself, but to those around you and the people you may care for.
1. A good routine
Try and maintain a similar routine every day that focuses on your own wellbeing – this is a signal to the mind and the body they are cared for too
2. Adequate nutrition
Skipping meals can lead to fatigue and malnutrition; it’s important that you fit in regular, nutritious (as much as possible) meals
3. Adequate hydration
Making sure we drink enough sends a kind message to the body
If the carer can take a break, even for 10 minutes, a short walk (even laps of the garden) can be good for the mind and the body
5. Contact with friends
No matter how brief, try and keep in touch with friends or social circles (including online friends). News of what’s going on for other people can balance home and social life
If people don’t understand the difficulties you might be experiencing, they won’t offer help. If they hear your struggle, they might be able to help
7. Contact with other carers
Carer support networks can validate emotional experiences and also offer practical advice and guidance.
8. Emotional support
Reach out to professional services if you are struggling and don’t know where to turn.
9. Change of environment
Try and think about changing where usual routines take place; this can be hard during lockdown but try and work together creatively to think about how it could feel different.
It can be tempting to ‘catch up’ on everything that has been left undone on an evening, but too many late nights can lead to fatigue which may maintain certain difficulties which is unhelpful in the long-term.
If you and your partner or family member share caring responsibilities, remember to try and work together as a team and avoid criticising each other. We are all trying to manage this situation in our own way, and we will make mistakes. Be kind. Remember the aim is connection, not perfection.
If you are aged 14-25 and would like help dealing with the psychological impact of mitochondrial disease please contact [email protected]