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The Newcastle Mitochondrial Team and The Lily Foundation have been publishing guidance about the ongoing situation of coronavirus in the UK (https://www.newcastle-mitochondria.com/coronavirus-updated-advice-for-patients-and-families/). We recognise that this is an uncertain and anxiety provoking situation and you may notice a shift in your psychological and emotional wellbeing. With that in mind, the Newcastle Mitochondrial Team would like to take this opportunity to share some advice in this regard. Please see below for guidance in relation to this:

For those living with a mitochondrial condition:

  • Avoid watching, reading or listening to news that causes you to feel anxious or distressed; seek information mainly to take practical steps to prepare your plans and protect yourself and loved ones.
  • Seek information updates at specific times during the day once or twice. The sudden and near-constant stream of news reports about an outbreak can cause anyone to feel worried.
  • Get the facts – gather information at regular intervals, from WHO website and local health authorities platforms, in order to help you distinguish facts from rumours.
  • Find opportunities to amplify the voices, positive stories and positive images of local people who have experienced the new coronavirus (COVID-19) and have recovered or who have supported a loved one through recovery and are willing to share their experience.
  • Stay connected and maintain your social networks. Even in situations of isolation, try as much as possible to keep your personal daily routines. If health authorities have recommended limiting your physical social contact to contain the outbreak, you can stay connected via e-mail, social media, video conference and telephone.
  • During times of stress, pay attention to your own needs and feelings. Engage in healthy activities that you enjoy and find relaxing. Exercise regularly, keep regular sleep routines and eat healthy food. Keep things in perspective.

 

For those caring for, or living with someone with a mitochondrial condition:

  • Feeling stressed is an experience that you and many other families or carers are likely going through; in fact, it is quite normal to be feeling this way in the current situation. Stress and the feelings associated with it are by no means a reflection that you cannot care for, do your job or that you are weak.
  • Managing your stress and psychosocial wellbeing during this time is as important as managing your physical health.
  • Take care of your basic needs and employ helpful coping strategies – ensure rest and respite during work or caring routines, eat sufficient and healthy food, engage in physical activity, and stay in contact with family and friends.
  • Keep each other members of the families feeling’s in mind, by sharing how you think and feel about the situation
  • Take the perspective of your partner or family member with empathy, they may feel differently to you
  • Ask your partner or family member what worries them most and try to validate how it is understandable
  • Try to listen and be there; you can’t fix the problem but you can create a feeling of safeness
  • (If relevant) Take turns managing the home, kids and other responsibilities
  • Avoid using unhelpful coping strategies such as tobacco, alcohol or other drugs. In the long term, these can worsen your mental and physical wellbeing.
  • If having to do social distancing, get fun things prepared which you enjoy doing together as a family or couple
  • (If relevant) Try to refrain from criticising each other’s parenting, do what you can to co-parent as a team
  • Remember it is about connection, not perfection and you can turn towards each other as a team

 

For those supporting children affected by mitochondrial disease and other children:

  • Help children find positive ways to express disturbing feelings such as fear and sadness.
  • Every child has his/her own way to express emotions. Sometimes engaging in a creative activity, such as playing, and drawing can facilitate this process.
  • Children feel relieved if they can express and communicate their disturbing feelings in a safe and supportive environment.
  • Share resources like those produced by @mindheart.kids (mindheart.co – Manuela Molina) to talk about the coronavirus.
  • Maintain familiar routines in daily life as much as possible, especially if children are confined to home. Provide engaging age appropriate activities for children. As much as possible, encourage children to continue to play and socialize with others, even if only within the family when advised to restrict social contract.
  • During times of stress and crisis, it is common for children to seek more attachment and be more demanding on parents. Discuss the COVID-19 with your Children using honest and age-appropriate information. If your children have concerns, addressing those together may ease their anxiety. Children will observe adults’ behaviours and emotions for cues on how to manage their own emotions during difficult times.

 

AnxietyUK has also suggested that using the APPLE technique can help to deal with anxiety and worry:

  1. Acknowledge – Notice and acknowledge feelings of uncertainty as it comes to mind
  1. Pause – Don’t react as you normally do. Don’t react at all. Pause and breathe.
  1. Pull back – Tell yourself this is just the worry talking, and this apparent need for certainty is not helpful and not necessary. It is only a thought or feeling. Don’t believe everything you think. Thoughts are not statements or facts.
  1. Let go – Let go of the thought or feeling. It will pass. You don’t have to respond to them. You might imagine them floating away in a bubble or cloud.
  1. Explore – Explore the present moment, because right now, in this moment, all is well.
  • Notice your breathing and the sensations of your breathing.
  • Notice the ground beneath you, or the feeling of your body on a chair, sofa or bed if you are sitting or resting.
  • Look around you and notice what you see, what you hear, what you can touch, what you can smell. Right now.
  • Then shift your focus of attention to something else – on what you need to do, on what you were doing before you noticed the worry, or do something else – mindfully with your full attention

For more information, please see the World Health Organization’s guidance on Mental Health and Wellbeing (https://www.who.int/docs/default-source/coronaviruse/mental-health-considerations.pdf?sfvrsn=6d3578af_2)

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