Caring for a child with a chronic illness such as Friedreich’s ataxia can be very stressful and can take its toll emotionally. The Friedreich’s Ataxia Parents’ Group suggests ways parents can better cope with stress, taking some of the pressure off themselves.
1. Have some “me” time
Taking some time out from looking after your child even if it’s just for a few hours can help immensely. Use this time to pamper yourself or do something you enjoy. If you can have someone babysit, take a day trip somewhere or an overnight stay. Even just a few hours spent shopping or relaxing in a warm bath with some soothing candles can help you de-stress and feel ready to face the world again.
2. Take comfort in meditation or faith
Some people find strength in their faith and through prayer, while others find that meditating or mindfulness helps them through the tough times.
Join the Friedreich’s Ataxia News forums: an online community for people with FA and their caregivers.
3. Enlist support
Talking about our problems helps humans cope. Talking to close friends and relatives can help, but also joining a support group where you can connect with others going through the same experience will allow to you share best practices and advice as well as receive emotional support. Knowing that you are not alone in your journey can help immensely.
Lean on friends and family to help with chores around the house and yard, leaving you with more time and fewer things to worry about.
4. Educate yourself
Take the time to find out as much about Friedreich’s ataxia as you can. The more you know, the more proactive you can be in your child’s treatment, which will make you feel like you have some control. Find out about clinical trials for new medications or treatments that may help your child.
5. Let it all out
It’s OK to get upset, angry and frustrated. Go somewhere quiet and allow yourself the time to cry and release the pent-up feelings.
6. Remember that not everything your child goes through will be related to FA
Children and teens have other issues. If they’re feeling sad or down, it may not be because they have FA. It could be because of something unrelated but perfectly normal for their age. Also, sometimes illnesses or viruses can temporarily make FA symptoms worse.
7. Look after yourself
Try to keep yourself physically and mentally well, seek medical advice if you feel emotionally overwhelmed so that you can be treated accordingly. Try to eat a healthy balanced diet, get some regular exercise and quality sleep so that you don’t become ill.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.