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Finding the Sparkle During My Dark Times With Chronic Illness

I recently came through a fairly dark spell with my illness where the fatigue and pain got the better of me and not having answers that gave me a clear path forward frustrated me. My response was to curl into a ball and give up for a little bit — hide away from people I care about, stop trying to communicate about my experience, stop working to make things better. It happens.

Fibromyalgia can be overwhelming when you hurt and are exhausted and your brain isn’t working well enough to formulate a plan to be as healthy as you can be. But cloudy days do pass and I’m back to trying. I have an obligation to do what I can to safeguard my body. It really hurts right now, but I still have good days, I’m still mobile, I can still do most of what I need to do. To me, that means I need to kick myself in the butt a little — eat well on the days I can and don’t let dietary setbacks send me into a donut eating frenzy; write every day; make my body as strong as I can; go for a walk, even if it’s only around the block. Anything I can do to push the blackness away and protect my body from deterioration has to be a priority.

For me, the biggest part of self-care is finding a focus for my mental energy, finding a purpose for my day even if I can’t get off the couch for more than 20 minutes at a time. I need to feel like I have a place in the world, in my community, in my family. I think we all do. We all want to feel like we are leaving a positive mark on the world. Finding that purpose is one of the hardest things about being sick. I’ve had to give up the things that would have formed my career. Most of that inner struggle has to do with other people’s opinions (or what I imagine their opinions to be) of my situation.

I struggled with this already when I was a stay-at-home mom and now that I’m a 50-year-old at home, it’s only gotten worse. People always ask “what do you do?” Raising kids isn’t enough. Educating them isn’t enough (unless you’re paid). I got some credibility when I started a girls’ choir in my town, so I just started calling myself a music educator. Then I started teaching voice lessons again and I felt more acceptable. But when fibro made those things impossible, I lost my professional credentials. People ask me that question in the most intrusive ways: “What are you doing? Still running the choir? Still doing your music? Still singing?” The disappointment on their faces when I say no is obvious, and it makes my position as an independent, able, intelligent, feminist woman feel so tenuous.

I know in my heart that these questions aren’t malicious. Most people are curious and wish me well. They have a magical idea of what a musician is and really want me to be that person. I want to be that person. But having to awkwardly answer that question is so hard. What am I doing? Taking care of myself and my kids? A wee bit of housework? A daily walk? It’s hard to convey how important those things are right now.

I kind of sparkle things up with bold, positive statements. I write. I’m currently collecting and selling vintage oddities (I don’t add that I’ve made all of $50). I’m teaching myself upholstery.

I think that’s where the magic lies when you have an incurable, invisible illness. You’ve got to find the sparkle, the meaning in the little things. Most of us spend a lot of time researching the best approaches to our illnesses. Most of us spend a lot of time planning and preparing appropriate food. We listen to podcasts, read interesting books, listen to new music, craft, color, talk to our kids. All of these little things can add beauty and shape to our days.

I’ve added small hobbies to the list. I wanted new furniture, so I’m teaching myself to upholster instead. It takes me forever as it hurts my hands and back, but that’s OK – I have lots of time. Since I couldn’t do a lot of gardening this year, I took up indoor plants and am learning to care for them and propagate them. And, of course, just caring for myself through this fibro flare and being present for my family are the two most important things I can be doing right now.

During that dark couple of months, exhaustion crept over me. It was so hard to plan meals. The heat and humidity kept me indoors for long stretches. The constantly changing weather played havoc with my headaches. But while I was moping on the couch, little habits started that helped pass the time. I found podcasts that interested me. I found YouTube videos that sparked new ideas I was able to bookmark for a time when I felt better. I discovered some of the foods that upset my system. All that time, ideas were percolating and concepts of how I might move forward were growing.

And now, it’s time to slowly put my ideas into action. Short walks, better eating, physiotherapy, a new referral, daily writing, hobbies — all of it is a start to better management of my symptoms. And when my symptoms are being managed, my mind is clearer, I can function better and I can do a little more.

And my days look brighter.

Getty image by Orn France.