Beyond Four Walls

Photo by Kinga Cichewicz on Unsplash

Warnings

Her gut was insistently intolerant of gluten, despite a later colonoscopy revealing she did not meet medical criteria for coeliac diagnosis. The cruel requirement to eat gluten in the lead up to the test made her so ill and weak (with either constipation or diarrhoea) that she could barely walk into the hospital. She persisted in the vain hope some new information might be revealed. Since childhood, dairy products were problematic. Now eczema broke out again frequently.

Misery

These stop signs, cleverly disguised as errant, malfunctioning, temporary ailments, belied the extreme distress that now enveloped her. In those first miserable months, she barely left her bed, except for many stressful medical appointments and tests as we searched for answers. She went days without showering because the physical exertion utterly exhausted her. Sometimes she needed to be helped to and from the shower. She was so dizzy; she could barely stand. I became her physical carer in all but official status. I did her washing. I drove her to appointments. I helped her shower. I made her meals.

Darkness seeped from her room

All this happened while we lived in our beautiful octagonal home, in a beautiful bushland setting on the outskirts of Brisbane. I was usually alone with an adult daughter barely able to shower herself and spiralling deeper and deeper into a self-destructive depression as more of her life disappeared every day — the job, the friends, independence, and her sense of self.

Eight years later

Almost eight years have passed since my daughter lost the life she thought would have. She turns 32 this week. We’ve all been in COVID-19 lockdown for the past 60 days — a situation that has introduced millions of people to the lifestyle that people with ME/CFS live interminably (albeit with less reliable energy). Ironically, the enforced insolation has removed pressures of physically attending doctor’s and therapists’ appointments, her main excursions, and her health has improved slightly.

Photo by Renee Hills Candle before a window

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Renee Hills

Renee Hills

Flash fiction, picture books, reflections on life, and poetry. Interested in ethical living, the environment and social justice. Reclaiming Italian heritage