ME/CFS Awareness week recognizes the millions of people around the world, their families, carers and allies who deal every day with ME/CFS.  Emerge Australia, Australia’s lead advocacy group describes Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as ‘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, among others.  Of the 250,000 Australians living with ME/CFS, some 25% are so severely impacted they are housebound or bed bound.’

For a long time, my 20-something daughter was in that 25%. It was one of the most challenging periods of my life. I want to honour the many parents, grandparents and carers of adult children with ME/CFS. Ours is a demanding and arduous road. I reflect on my journey here:

When my daughter first became seriously ill, I was deeply afraid. I sensed that this was no ordinary illness. Her inability to get out or 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 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 wonder if friends realized how disturbed I felt or how ill my daughter was, because not many responded to my message. They probably thought ‘Oh, she’s just having another drama with her daughter.’

And they would have been correct. It was another drama and there had been plenty of dramas. All through her teenage years and early 20’s, friendships went awry; she experienced self-loathing and depression, anxiety, parties where too much alcohol and god knows what else was consumed. And me, her mother, in a constant state of hyper arousal, poised for the next phone call, the next rescue, the next catastrophe. Perhaps, I thought, my friends are tired of hearing all this.

Lately though, she’d been more settled. She’d lived in Italy for a year, working and travelling, 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 principal 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. I look back and see the 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. consuming dairy products linked with eczema which now broke out again frequently. But the most dramatic warning was the difficulty regulating sugar levels. Medical and DNA testing finally revealed that she was a true hypoglycemic – someone whose insulin production does not do the timely switch off after eating sugars. In this state, she resembled the spent spring of a music box ballerina doll. Her speech and movements faltered like the 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 herself 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’. 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 were the stop signs, cleverly disguised as errant, malfunctioning, temporary ailments, belying 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 tried smoothies filled with supposed super-foods. I researched non-irritant foods and 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.

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 was very unclear.

People told me later they admired my resilience, my care and patience, my 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, approaching her silent, dark room, dreading what I might find.

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 a 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

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.

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