By J.G. Chayko – The Old Lady in My Bones
It was a typical November morning for the Pacific West Coast – overcast and damp, infused with the chill bite of marine air. A grey light filtered through the curtains. I lay in bed listening to the rain slap against the window, my eyes crusted with the dust of insufficient sleep. My body felt flat and heavy, as if a truck had run over me in the night. My joints were sore, swollen and thick, my skin hot to the touch. Rehearsals and dance class had taken their toll. I was clearly coming down with the seasonal flu that was already sweeping through the cast.
I stayed home, took a hot bath, sipped a cup of warm tea and by early afternoon, I started to improve. My stiff swollen joints returned to their usual fluidity and the dense fatigue that stuck to me like Spanish moss began to lift. By evening I was almost back to normal, apart from a little bit of lethargy that I couldn’t shake. The next morning, it started all over again and the pattern continued for a few weeks. I suspected there was something more going on. A visit to my family doctor resulted in a referral to a Rheumatologist.
I was 38 years old when I heard the words “early Rheumatoid Arthritis”. I couldn’t quite grasp what that meant to me – after all, I was young, active, and fit. I was a dancer and an actress, a person who relished in the ability to manipulate her own body. I had never been touched by chronic illness. It was inconceivable to me that I was facing a disease that threatened my mobility.
My life began to change, waxing and waning like the moon, until eventually the phases stopped. Dance, which had always been second nature to me, became difficult due to the onset of pain and fatigue. I was used to many injuries as a dancer, but this incessant feverish pain simmering in my joints was unlike anything I’d known. I took a break from theatre, unable to maintain the stamina of long rehearsals and performance. I was put on medication and referred to physiotherapy. My medical team educated me on lifestyle changes and managing flares. I was doing all the right things to control my disease, but my life felt stagnant. I had none of the creative stimulation I’d worked so hard to attain. The artistic life I’d always known began to fade.
I was determined to find a way to keep the creative life I’d built. I switched to part-time work and took a chance on a passion I’d honed since childhood – writing. My first publication was a story about my great-grandmother. Short fiction pieces and poetry followed. I started a blog on living with RA called The Old Lady in My Bones. The words fostered a new creative outlet and helped me see my life from a new perspective. I found support in communities, both local and online, and began to push my boundaries a little more each day. I was given opportunities to share my work with magazines and national websites. Last year I was a contributing writer to a book on living with rheumatic disease.
The more I learned about RA, the easier it became to shift the particles of my life to make it fit within my new limitations. I adjusted my lifestyle to get the most out of my days and built a path back to the creative world I love. I returned to the theatre and dance class on a limited basis. Last year, I had the honor of choreographing a show where partial proceeds were donated to Cassie and Friends, a local organization supporting children living with all kinds of rheumatic disease.
Rheumatic disease is unique to each of us. It takes time to find our new rhythm living with chronic illness. I found a richer quality of life indulging in all the little things I’d overlooked in a hectic life. I focused on the things I could do, rather than mourn what I thought I lost. I discovered no triumph is too small – whether it’s simply getting out of bed or running ten blocks, celebrate every moment and recognize it as a milestone.
RA did not end my life – it simply transformed it.
“I have developed my own strategy for days like this – my own arthritis emergency kit, if you will. When an arthritis flare brings my hectic world to a halt, it does not stop me from discovering the charming luxuries life has to offer. I accept it as the break my body is telling me I need. I get to pause and take pleasure in the small things I can’t always fit into my usual routine. It is part of the new rhythm of my life with RA.
There will be days like this. There will be days when arthritis kicks me in my proverbial rear. I can’t avoid them, I can’t even predict when they will happen, but I can appreciate them for what they are – a reminder that even when the clouds come in, there are still ways of finding small pleasures in a life with arthritis.