Looking after you

Caring for a child with a rare genetic condition, disability and/or chronic illness can be rewarding and challenging at the same time. As a SWAN parent or carer, you might feel overwhelming pride, love, anxiety and fatigue all at the same time. You are not alone.  

Carers Australia is now conducting an annual Carer Wellbeing Survey. The 2021 survey found that 35% of Australian carers often felt lonely and 50% felt that caring had a negative impact on their health. You can read more about the survey findings on their website. 

Care burnout is a real thing. Burnout involves feelings of mental and/or physical exhaustion. HelpGuide lists several symptoms, including feeling irritable, hopeless or having a chronic cold. It is difficult to look after others when your cup is half full. Please take the time to do something for yourself each day, no matter how small. If a carer burns out, they have limited capacity to help anyone. Here are a number of self-care resources, strategies and tips: 

Look after your physical health

  • Eat wholesome food. You definitely don’t need a lecture on healthy eating, but it can be easy to forget to nourish yourself properly in the midst of a busy schedule. Nutrition Connection has prepared 20 easy meal ideas for carers, which you can access for free. 
  • Exercise regularly
    • Aerobic and strength: gym classes (virtual or in-person), individual exercise or team sports
    • Yoga and pilates: scheduled classes or for ultimate flexibility, Youtube (which has channels for various ability levels)
    • Walk with music or a podcast. This is a quick and accessible way to get some exercise and me-time. Podcasts can provide you with useful information and help you feel connected simultaneously. Some suggestions:
      • Too Peas in a Podcast for relatable and heart-warming content 
      • Let’s Talk About Mental Health for a range of mental health topics, with practical tips. There is an episode specifically about self-care. 
      • Informational podcasts for a quick dose of the news or something interesting to think about e.g. The Squiz, TED Talks Daily or Stuff You Should Know 
      • Whatever tickles your fancy. You may love a bit of true-crime or fantasy to give you a momentary break from reality. 
  • Sleep 7-9 hours per night. We understand this can be difficult for SWAN parents, especially with young children. You can use apps that help you to track the duration and quality of your sleep to understand how sleep may be affecting you or how much to catch up on.

Look after your mental health

  • See a counsellor. The Carer Gateway website lists  a number of strategies for better physical and mental health and also has a free carer counselling service. If you ever need crisis support, you can call Lifeline on 13 11 14.
  • Mindfulness and meditation. If you are new to meditation, apps such as Headspace and Calm can get you started. Practicing mindfulness helps you to be present and aware so that you can regulate your emotions and experience life more fully. Please watch this space for a recording of our Meet the Experts Session with psychologist Evelyn Bugel, which incorporates mindfulness and somatic experiencing. 

Connect with others

  • Seek peer support. Please see our events calendar for peer support events.
  • Socialise with friends, family or enjoy one-to-one time with your partner. Whether this is a casual coffee, fun activity or night out, feeling connected and supported is important. We know plans often change for SWAN families but planning backup supports for your child ahead of time can help you get out the door. The pandemic has been a particularly stressful time for families with vulnerable children. Catching up virtually with friends is an alternative if you are still limiting social interactions. Please see our recorded Meet the Experts session with psychologist Dr Sue Hawkins on “Coping in the pandemic… what helps”. 

Set aside me-time for hobbies or relaxation

Everyone has their own way of unwinding and enjoying themselves. Meditation is not for everyone – what do you find relaxing? As a carer, it is hard to set time aside for yourself. Consider scheduling this time in, just as you would schedule your child’s therapy appointments. If you’re not sure where to start, here are some ideas to get you thinking:

  • Reading
  • Art Therapy: the use of artistic techniques to express yourself and relieve stress. The focus is more on doing the art than the art itself.
  • Massage therapy
  • Time in nature: hikes, surfing, relaxation at the beach etc.
  • Catching up with friends

Continually adapt your self-care plan

It’s important to be flexible with self-care. Self-care is about addressing your personal needs rather than subscribing to a general set of standards. If you have had a physically taxing day, you may wish to prioritise rest over exercise, for example. 

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