#selfcare – Skillfully Well & Painfully Aware

My daughter isn’t quite two yet, but she knows what it means to say that you’ve hurt yourself. She says “owie” if she falls and bumps herself, and runs over for me to kiss it better. Then she wants a hug and a cuddle. (Who doesn’t?)

One day, recently, I was telling my husband that my low back was hurting me – actually, that it was killing me – and suddenly my little one dropped her toy and came running over to me. I got a big “mwah” and a kiss on my leg, and she wrapped her arms around me. I realized from her expression that she was worried because she understood that I was in pain, so I told her that I was feeling all better thanks to her kiss. Her face cleared and she seemed satisfied, so she ran back to her toys.

In that moment, I had so many emotions. I felt happy that my daughter was so sweet and thoughtful, but guilty that she needed to worry about and care for me. Shouldn’t it always be the other way around? I don’t want her to ever worry about me.

I felt concerned about the words that I used – to say my back is killing me could make her very anxious once she understands the meaning of those words.

I hate to feel that she ever needs to worry about me. Shouldn’t it always be the other way around?

I talked with my husband afterwards about better word choices. I might try to say that my back is flaring up, that it’s uncomfortable, or even just that it’s hurting.

I’ve read that trying to hide or suppress your feelings can actually cause more anxiety for children. Of course, anything you express needs to be done in an age appropriate way, without scaring or overwhelming your little one.

Trying to pretend I’m completely fine usually backfires anyway- being in pain, masking the pain, and caring for a toddler is a recipe for a massive flare up. It’s actually better when I stop resisting reality, and go to Plan B – let go of our expectations for the day, watch a bit of tv, read together, lie in bed, or let her go wild and take all the toys out of all her toy baskets.

If only it was that easy. Often I’m not aware that the pain is building and building until it’s too late. I’m so used to suppressing the normal amount of pain that I’m in that I don’t have the awareness to realize that I have to stop and take care of myself. Sometimes I only realize because I am snapping at my daughter or husband. I had better awareness before becoming a mom – when I had time and space. But now I’m entirely fixated on looking after my little one and there just isn’t the capacity to practice as much self-care. This is obviously a work in progress!

It’s so hard to look over your expectations for what you want to give your child, even on a daily basis of giving her enjoyable and enriching experiences. Letting go of expectations is not something I’m good at. For example, want to take her to the park, but I can’t always lift her into the swing or help her climb the stairs. It’s so sad to see her disappointment when I tell her I can’t take her. Of course having a present and loving parent is the most important thing, but you always want the best for your children.

Chronic illness is isolating. Spending hours alone every day can be lonely. Here’s what I have learned about embracing solitude and learning to be comfortable in my own company.

Overcoming Isolation: How To Enjoy Alone Time Caused by Chronic Illness

Before the pandemic, I went out for lunch with friend who had just transitioned from her office to working from home. She described dreading the long hours on her own, and the resulting cabin fever of spending so much time in one place. As I listened, I realized what a significant transformation my own feelings about solitude have undergone during my illness experience.

As an extrovert, I’ve never looked forward to spending an entire day by myself – never mind a succession of days. I prefer to be around people. I’m happier spending an afternoon in a café than my living room. When chronic pain forced me out of grad school, I was at a loss of what to do with myself at home all day.

But I think it’s about more than being an introvert versus an extrovert. Looking back, I don’t think I ever distinguished between loneliness and solitude. I wasn’t comfortable with my own company. As I reflected on what I have learned about embracing solitude, I came to a few conclusions about the lessons my experience has taught me and what I’m still working on.

Being Present For Simple Pleasures

The first step on my path towards becoming a reformed extrovert was learning to value being present. A year or two after being diagnosed with fibromyalgia and endometriosis, I was referred to a Mindfulness-based Stress Reduction course at my hospital – an eight week program on using mindfulness meditation to manage pain. I often credit mindfulness meditation for maintaining my sanity, but one of the most important lessons that I’ve learned is that there are many enjoyable moments in ordinary life that can enrich our lives if only we pay attention in the present moment. The sun on your face, bird song out the window, a great cup of coffee, or a snuggle with your pet are all examples of simple, everyday pleasures that are available for us to enjoy if we learn to tune in to the present moment. Being on autopilot most of the time meant that I was oblivious to these experiences. It’s often easier to savor these times on your own rather than in company, and that’s one of the reasons I have come to value my alone time.

Exploring New Horizons (From Home)

A second change in my perspective has come from exploring my interests and finding new hobbies. In other words, unleashing my inner geek. From reading, and watching and listening, I’ve discovered that I love historical murder mystery books, political news, blogging, archaeology documentaries and calligraphy. I feel fortunate to live in an era of podcasts, online libraries, free e-courses, audiobooks and streaming. If your illness keeps you at home much of the time, being able to explore new horizons from your couch is fantastic. Whether or not you are crafty, artistic, musical or nerdy, there’s something out there for you to geek out on. I honestly haven’t found anything else I prefer to do on my own as much as to feed my curiosity. In the process, I have learned about myself. Learning more about the world helps you understand your own place in it better. Discovering new interests, and new talents is deeply rewarding. Spending time that way really transforms loneliness to solitude.

Making Time For Meaningful Self-Care

Finally, seeing the dividends of investing in self-care has made me more open to making time for myself. This isn’t an easy thing to do. You often see advice about self-care made out to seem like it’s as simple as lighting some candles and taking a bath now and then. I think it’s really about changing your relationship with yourself. Who wants to spend time with someone they don’t like very much? No one. If you have an inner critic with a megaphone, of course you don’t want to spend alone time together. The prospect of spending time by myself months that I was always looking for another distraction. In the age of scrolling through social media and binge watching TV, I think enjoying me-time is almost a lost art form (not that I like binge watching any less than the next person!).

It takes a change in mindset to identify negative self-talk, challenge it and replace it with a kinder and gentler perception of yourself. Self-care is really about self-compassion, and accepting that you’re only human, just like everyone else – it’s okay to be imperfect and make mistakes. For many people there is a lot of worry, guilt, frustration and self-blame tied up in developing a chronic illness. Cultivating self-compassion in the face of difficult circumstances is a long process, and I’ve found that many lessons need to be re-learned over time. Journaling, meditating, CBT, and therapy are all ways to improve your relationship with yourself. Learning to be more comfortable in my own skin has made me enjoy my own company much more than before. And now I’m much more likely to enjoy a quiet cup of tea, listen to music, meditate, or actually do any of the self-care activities by myself that are listed in the lifestyle magazines!