spa Self Care

Finding a pace that suits you

Pacing means organising activities and breaks around what feels manageable for you. It can start with a simple question: what matters most today, and what can wait or be shared? You might split a task into smaller parts, sit down for part of it, or leave a gap between appointments. There is no fixed activity-to-rest ratio you need to follow. Pacing means organising activities and breaks around what feels manageable for you. It can start with a simple question: what matters most today, and what can wait or be shared? You might split a task into smaller parts, sit down for part of it, or leave a gap between appointments. There is no fixed activity-to-rest ratio you need to follow.

Look at how you feel after an activity as well as while you are doing it. If a busy outing regularly leaves little room for anything else, you could try shortening it or keeping the following day less crowded. A brief note about the activity and your recovery may help you notice a pattern, without turning every day into something you have to measure. Look at how you feel after an activity as well as while you are doing it. If a busy outing regularly leaves little room for anything else, you could try shortening it or keeping the following day less crowded. A brief note about the activity and your recovery may help you notice a pattern, without turning every day into something you have to measure.

On a better day, it can be tempting to catch up on everything at once. You can also choose to spend that time on something you enjoy and leave some flexibility in the day. A plan is useful when it helps you decide what to do; it is less useful if it becomes a target you feel you have to meet. On a better day, it can be tempting to catch up on everything at once. You can also choose to spend that time on something you enjoy and leave some flexibility in the day. A plan is useful when it helps you decide what to do; it is less useful if it becomes a target you feel you have to meet.

Making room for rest

Rest can be part of the day you plan, rather than something you allow only when everything else is finished. Leaving a quieter period around a demanding activity may make your schedule easier to manage. You do not need to justify every break by how productive you were beforehand. Rest can be part of the day you plan, rather than something you allow only when everything else is finished. Leaving a quieter period around a demanding activity may make your schedule easier to manage. You do not need to justify every break by how productive you were beforehand.

What feels restful is personal. You might want quiet and fewer interruptions, or prefer music, a familiar programme or time with someone you feel comfortable around. Try what suits you, and change it when your needs change. Rest does not have to look the same every day. What feels restful is personal. You might want quiet and fewer interruptions, or prefer music, a familiar programme or time with someone you feel comfortable around. Try what suits you, and change it when your needs change. Rest does not have to look the same every day.

Sleep deserves attention too. A regular routine may be useful, but persistent poor sleep, snoring or daytime sleepiness are worth discussing with your team. If fatigue is new or worsening, bring that up rather than assuming it is something you simply have to put up with; there may be contributing problems that can be assessed and treated. Sleep disturbance and new or worsening fatigue warrant assessment for treatable contributors. Discuss poor sleep, snoring and daytime somnolence with the treating team; practical rest strategies should not replace investigation of a change in symptoms. ^{[2, 4]}

Looking after your emotional wellbeing

Anxiety and low mood can sit alongside the physical effects of mitochondrial disease. They deserve attention as part of your care, just as fatigue and other symptoms do. If they are affecting daily life, it is reasonable to bring them up with your clinician. Anxiety, depressive symptoms and fatigue can contribute to disease burden and quality of life in m.3243A>G disease. Psychological symptoms merit assessment and support alongside physical manifestations. ^[1]

Changes in health can also bring frustration, uncertainty or grief about things you had expected to do. You might feel that at diagnosis, when plans change, or at times when other people seem to be moving ahead. There is no particular way you are supposed to feel, and you do not have to resolve those feelings before asking for support. Changes in health can also bring frustration, uncertainty or grief about things you had expected to do. You might feel that at diagnosis, when plans change, or at times when other people seem to be moving ahead. There is no particular way you are supposed to feel, and you do not have to resolve those feelings before asking for support.

Talking with a counsellor or psychologist is one option if distress is affecting your life. You can explain what you want help with, whether that is coping with uncertainty, adjusting to a change or managing anxiety. The right support should reflect your needs and preferences. Consider counselling or psychological support when distress affects daily life. Assessment should guide an approach that reflects the person’s symptoms, priorities and preferences. ^[1]

You may also value talking to people who understand the day-to-day experience of a mitochondrial condition. Peer groups can offer companionship and practical ideas, even when your symptoms differ. The support and specialist centres page is a place to start; individual treatment decisions still belong with your clinical team. You may also value talking to people who understand the day-to-day experience of a mitochondrial condition. Peer groups can offer companionship and practical ideas, even when your symptoms differ. The support and specialist centres page is a place to start; individual treatment decisions still belong with your clinical team.

Alongside those conversations, leave room for the interests and relationships you want in your life. An activity may need to be shorter, adapted or shared with someone else, but it does not have to become another health goal. Enjoying it can be enough. Alongside those conversations, leave room for the interests and relationships you want in your life. An activity may need to be shorter, adapted or shared with someone else, but it does not have to become another health goal. Enjoying it can be enough.

A few practical things to put in place

Choose the ideas that would save you effort. You do not need a new system for everything.

• Keep useful things nearby. Keep drinks within reach if that helps you follow your fluid plan, and have suitable snacks available if they fit your nutrition and diabetes needs. Choose things you actually like and can manage, rather than stocking up on foods you feel you ought to eat. Keep drinks within reach if that helps you follow your fluid plan, and have suitable snacks available if they fit your nutrition and diabetes needs. Choose things you actually like and can manage, rather than stocking up on foods you feel you ought to eat.
• Put information in one place. Use a calendar, notes or reminders for the things you want help remembering. Keeping appointment details, questions and an up-to-date medication list together can save you having to gather everything again each time. Use a calendar, notes or reminders for the things you want help remembering. Keeping appointment details, questions and an up-to-date medication list together can save you having to gather everything again each time.
• Make emergency details easy to find. Keep your emergency card, specialist contact details and personal care plan accessible. Let someone you trust know where they are, if you would like them to help when you are unwell. Keep your emergency card, specialist contact details and personal care plan accessible. Let someone you trust know where they are, if you would like them to help when you are unwell.
• Make communication easier. If hearing difficulties make conversations tiring or hard to follow, discuss changes and available support with your audiology team. You can also let people know how you prefer to communicate. Discuss hearing changes and communication support with the audiology team, and make communication preferences known to others. ^{[2, 3]}