This story is for all parents/carers who are among the millions of people around the world dealing with Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome. ME/CFS is a ‘complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems’ (Emerge Australia). ‘Of the 250,000 Australians living with ME/CFS, some 25% are so severely impacted they are housebound or bed bound.’ There is no cure.
For years, my 20-something daughter was in that 25%. Supporting her is still the biggest challenge of my life.
When my daughter first became seriously ill, I was deeply afraid. I sensed that this was no ordinary illness. Her inability to get out of bed or to stomach most foods or to think rationally — this was something desperate and dire. This was no ordinary ‘flu or a simple case of exhaustion. This was a body in extreme distress, operating systems corrupted, teetering on the edge of a deathly shutdown.
In my fear, I posted on Facebook asking for healing thoughts — prayers if anyone believed in them. I wasn’t sure that I believed in prayers, but we needed help. Conventional medicine offered no explanation or solutions. Alternative medicine and nutrition offered only slight relief at exorbitant prices. I don’t think my friends realized how disturbed I felt because not many responded. They probably thought ‘Oh, she’s just having another drama with her daughter.’
And they were correct. It was another drama and there had been plenty. All through her teenage years and early 20’s, friendships went awry; she experienced self-loathing and depression, anxiety and parties where too much alcohol and god knows what else was consumed. And me, her mother, in a constant state of hyperarousal, poised for the next phone call, the next rescue, the next catastrophe. Perhaps, I thought, my friends are tired of hearing all this.
Lately, my daughter was more settled. She’d worked and travelled in Italy for a year, returning home only when her visa expired. She determined to save up quickly so that she could return to the country where she felt completely at home and where she could remain indefinitely on an EU passport recently acquired through Italy’s jus sanguinis, the Right of Blood. This legal principle of Italian nationality law allowed her to claim Italian citizenship through me. I, in turn, claimed it from my father who was born in Australia at a time when both his parents were still citizens of Italy.
I felt alone, physically and emotionally when at 24, her body systems flicked into the peculiar, elusive illness that most people call Chronic Fatigue, medically termed ME/CFS. It happened suddenly, but in retrospect, of course, there were warnings. Flashing red lights.
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.
However, the most dramatic warning involved regulating sugar levels. Medical and DNA testing ultimately showed that she was hypoglycaemic — her insulin production did not switch off early enough after consuming sugars. In this state, she resembled the spent spring of a music box ballerina doll. Her speech and movements slowed like that faltering, tinkling music as the doll twirled ever more slowly. Her thoughts were scrambled and her body was faint, dizzy, cold and clammy. She could not function. She could not drive home from work where she managed a fashion retail store. The doctors said ‘take glucose’ (first we had to find a gluten-free version) ‘or a juice’, but she quickly learned this sent her into a spiralling cycle of energy followed by slump; energy followed by slump. She called it a ‘sugar crash’.
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.
Most foods sent her gut into painful spasms. I made smoothies filled with supposed superfoods. I researched non-irritant foods. I learned to cook without onion, garlic, tomatoes, capsicum, cheese or any other dairy product, sugar and gluten. I crushed almonds and made our own almond milk. I tried to make kefir probiotic and yogurt from the almond milk. I bought organic food.
I continually trolled the internet looking for research and answers. I printed off reams of confusing, conflicting information. Eventually, I found the ME/CFS Australia Facebook group where authentic user information was honestly shared, including recommendations for sympathetic doctors and other professionals. Many doctors still don’t recognize ME/CFS as a serious medical condition. The resulting gaslighting and disrespect that my daughter experienced exacerbated her emotional and physical distress.
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.
My older daughter was working and travelling overseas. My husband was interstate managing a massive project that consumed his attention. He came home some weekends but did not seem to understand the depth of my fear and despair. I struggled to explain that the darkness in our daughter’s room was seeping out and threatening to engulf me. My life was on hold and my future, now bound to my daughter’s, seemed very unclear.
My friends told me later they admired my resilience, patience, and dogged attachment to hope. Mostly, what I was feeling was terror at the responsibility of ensuring, as much as was in my power, the mental and physical well-being of an adult child who was incapable of rational decisions or physical activity. On the worst days, I made brief forays to the gym or the supermarket and returned home in fear, dreading what I might find in her silent, dark room.
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.
Six months ago, she was just well enough to successfully apply for a scholarship and then to enrol in an online life coaching course. This has literally been a life-line, connecting her to inspiring women, some of whom have created viable careers despite chronic illness. She is currently developing her own online coaching business. Mentoring other womxn (sic) to change mindsets, set boundaries and increase confidence and self-worth will allow her to share the wisdom of her hard-won life experience as well as potentially creating an independent lifestyle.
She still needs to pace her activities and their emotional demands very carefully. She still needs to rest. She rarely sees friends face-to-face. Every outing requires the energy payback period, requiring extra rest, and sometimes including headaches and exhaustion. She’s made close friends online. She is building a new life day by day. She still plans to return to Italy.
Perhaps my friends’ thoughts and prayers did work. My daughter is still here. That in itself is a miracle. Amazingly, she is stepping into a new version of herself, living with ME/CFS. If I believed in prayer, I would say something like these words I wrote in 2015 when my daughter was entering the third year of severe illness. I offer them now in gratitude and deepest hope that all sufferers of ME/CFS may find the life beyond.
Beyond the four walls, the white ceiling and the cluttered floor
beyond the nausea and death-like weakness
beyond the brain fog that renders decisions almost impossible
beyond the persistent need for excessive rest
beyond the merciless chip, chip, chip of malicious despair
beyond the job no longer worked
beyond our fractured family
beyond those doctors who will never understand
and who have no magic cure
beyond the well-meaning friends who suggest getting a grip
beyond the fear that this will go on and on until the end of days.
Beyond lies hope, frail and shimmering
an indistinct shape of a life that is joyous
fulfilling, purposeful, committed
beyond lies whispered confidences with a lover
beyond lies an adored puppy
beyond lies travel and return to your beloved Italy
beyond lies your own home
beyond lies frustrations, delights, challenges
beyond lies the ordinariness of an ordinary life
Beyond is calling