Why Self-Care Is a Full-Time Job as Someone With ME/CFS


When you have a chronic illness, self-care can be a full-time job. In fact, I probably put in more that 39 hours a week into my self-care. Fifteen years of practice means I’m pretty much an expert. I’ve learned that if I really commit to self-care consistently, I can feel quite well a lot of the time. I’ve also learned that without the extensive support of my very structured self-care routines I soon notice that I do indeed have an energy-limiting chronic illness (ME/CFS).

Self-care is both a wondrous gift and a reluctant obligation depending on the way I choose to look at it in the moment. However, I do my best to keep focusing on how much I get back from it and not on how much I have to put into it for it to work well! I love what it can give me and I try to avoid resenting that I have so little room for spontaneity and difference in my life.

My self-care falls into two very important categories: what supports my physical well-being and what supports my happiness. Without the second, I have no motivation for the first, and without the first, the second is far more challenging!

As I wake up I take a lucky dip in my box of affirmations and then connect to my vision, trusting and letting go. This is all about supporting my mindset and working with the law of attraction.

Next I make myself a drink of hot water and lemon. I drink a couple of mugs full while I do my T’ai chi warm-up. Re-hydration and gentle movement are important to support my lymphatic system and start detox. I always feel kind of poisoned first thing in the morning, but after my morning practices I feel a lot better. My T’ai chi form falls into both categories. I see it both as a form of energy medicine and as a practice in presence and a connection with oneness. I then meditate for 20-25 minutes; physically this helps me engage my parasympathetic nervous system which allows my body to direct its resources to healing, emotionally I start off the day feeling calm and positive.

I run my own business from home, so that I can manage my own hours around the needs of the illness. Before I start, I listen to a brief motivational audio reminding myself of who I am and what I commit to creating. In order to get a sense of achievement I have to be very structured with the way I work. I have to do anything creative first thing in the morning before my ability to think slows down. For me self-care is all about how I can get the best out of myself and avoiding the frustration and disappointment of how little I’d get done if I allow myself to be distracted by my emails and social media before I’ve got the creative stuff done.

Throughout my work morning I drink several mugs of green tea for its anti-oxidant properties. (In the past I wouldn’t have been able to support the caffeine involved, but as I’m a lot better than I was. I can manage now as long as I stop by lunch time.)

A late breakfast serves several purposes. The primary reason is that I’ve found 15 hours of intermittent fasting really supports my well-being. When I’m enjoying work I sometimes struggle to remember to take a break, but breakfast serves as a substantial break. Another aspect of self-care is mindful eating and not jumping up at the end of the meal to get back to action. (That’s definitely still a work in progress.)

I have another break later in the morning, starting it with a short dance to change my energy and help me let go of whatever I was thinking about. My second break is often my shower time too, and self-care involves relaxing, taking my time and enjoying the sensuality of my skin care routines.

Self-care is also stopping work early before I’ve gotten tense or tired.

I eat a lot of fresh organic veg (home grown when in season) and usually lunch on a salad or vegetable soup. Self-care is also preparing food for myself with as much love and care as I would do if I was preparing it for someone else.

After lunch is rest time. I aim for at least 10 minutes of stimulation-free rest and when the weather allows I combine that with a bit of vitamin D therapy (sunbathing). Then I settle into an easy read novel, for another hour or so.

Next comes my Donna Eden energy exercises to help get me started again, followed by my journaling. My journaling is about self-development and helping me pay attention to gratitude and appreciation.

Then comes an hour of yoga and meditation, both for the physical and spiritual aspects.

I may then have another hour’s work before an early dinner to make sure I can have a 15-hour fast.

After dinner is play time. I make sure I spend at least an hour enjoying something that lifts my spirits. Often that’s working on my veg plot or going for a walk. Both of these activities help me attain another self-care goal which is daily connection with nature.

If I decide to watch anything for entertainment I switch screens off by 9 p.m. and have an hour winding down with a book before lights out. Often though I prefer a quick visit with a friend instead of TV. Connecting with friends and family is also self-care.

Essential oils are another important aspect of my self-care. They help me relax and manage my mood when things are challenging.

Self-care to me is also about giving myself time and space to experience my emotions, acknowledging and accepting what is with compassion. It’s working on my mindset to help me see things positively. I aim to be playful and trusting, lighthearted and joyful, loving and kind – but I also accept that I am human and choose to be kind to myself when the emotional impact of living with chronic illness takes its toll. I find that accepting my feelings with compassion allows them to flow and change.

Self-care is also being kind to myself when I don’t manage to do all of the above, and occasionally making the choice to step beyond my limits in order to feed the desire of my spirit, knowing that I will accept the consequences and take care of myself afterwards.

#SelfCareChallenge

Getty Image by Eloku


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