Last week, I caught COVID. On the whole I had a fairly mild case; one day with a headache and mild nausea, after which I finally took some paracetamol and felt much better. I did feel fatigued for the rest of the week. Being fatigued brought back to me how my son must have felt when he suffered from chronic fatigue syndrome – except for him it lasted for years, rather than a few days. My reflections then turned to how I fared as his carer during those years. There was a lot to contend with: his health, his schooling, his lack of community and connection, the bleak outlook for his future, and also being a parent to my other three children. I felt very isolated, I didn’t know anyone else going through what I was going through, I didn’t know of any support groups, and the people around me didn’t seem to understand. I saw the look in the eyes of family, friends, medical professionals and some teachers, which communicated their lack of belief or understanding. One paediatric specialist told me my son’s debilitating headaches and fatigue were due to growing pains, and there was nothing wrong with him. That was a low point.
Luckily, I knew my son. I could see first-hand how he suffered, and I was determined to support him.
In providing that support I learned a lot about caring for someone who is chronically ill. Principal among these lessons was that caring is a marathon, not a sprint. To be the best carer meant caring for myself.
As we worked together on improving his health, it became apparent that healthy eating, moderate exercise and movement, getting quality sleep and managing stress levels are all important for the person who has chronic fatigue, and are just as important for their carer. I saw that I couldn’t really help him if I was depleted of energy and sick myself. The changes I made supported my health, and the improvements for both of us increased our motivation and mutual support.
When you are in the middle of a situation, you cannot always see a way out. If you are caring for someone with chronic fatigue syndrome and are unsure of where to start your self-care, here are some ideas.
- Take time out every day – even if it’s only five minutes to breathe and relax – be mindful. If you have time, a warm relaxing bath can be like a mini holiday.
- Take a day every week where you focus on you – a day out with friends, a day in nature, a day curled up with a good book, a day at a community event or doing something else you love.
- Connection is critical for health. Even though much of your life is consumed by being a carer, finding time to be you with your friends is important. So, talk to a friend, have a real conversation, make contact with others. Expanding and nurturing your network beyond the home expands your community and brings more to all members of your household.
- Find a support group; in person, on-line, whatever works best for you. This gives you opportunity to talk to others who get what you are going through.
- Eat nutrient dense foods. If you love to cook, then spend some time in the kitchen. If you don’t like to cook, try some healthy delivery meals such as www.dineamic.com.au or www.wefeedyou.com.au; this way, when you need a break, you can have some healthy meals handy, rather than resorting to unhealthy fast foods. Reduce sugar and processed foods, and eat good quality protein. Eat the rainbow of vegetables and fruit.
- Exercise/move regularly. Do something you love, walk or ride a bike, go for a run, join a gym, find a YouTube video class that works for you. There are so many health benefits from moving, including an improved mood.
- Make sure you get quality sleep. Get outside for natural daylight every day, avoid screens in the evening – particularly in the few hours before bed, don’t eat in the few hours before bed. See my e-book Improve Your Sleep for more information.
Taking care of you means the person you are caring for will get higher quality care, you are worth it and so are they.
Note: If you are changing your diet and/or a taking on a new exercise regime, be sure to consult a medical professional.