I caught a virus and never recovered – PART ONE

Sunshine Coast Hinterlands, August 4th, 2013

Life as I knew it changed forever on August 12, 2013. I remember the days leading up to it very clearly, as they were the last days I remember feeling normal and well.

I caught a virus

Only a week prior, my husband and I went out for dinner to celebrate our wedding anniversary on the Saturday night. The next morning, we were up early with our three young children and drove to the Sunshine Coast hinterlands. We filled our day rainforest walking, picnicking and kicking the footy in the park, while enjoying the crisp mountainous air and taking in the beautiful scenery.

Healthy and Happy! August 3rd, 2013. 

I was 39 years young and quickly approaching my 40th birthday. I remember looking forward to my forties and entering this exciting new chapter of my life. I felt grateful for reclaiming my health and energy after recovering from a hysterectomy. No longer did I have chronic pain from endometriosis and adenomyosis, which I had endured for years. Plus, all three of my children were now at primary school. I felt free. I felt like there were no limits to what I could achieve. 

I’d just completed illustrating my first children’s picture book – a dream I had since I was in primary school – with the promise of many children’s book publishing contracts to follow. This was the beginning of my exciting new chapter.

So I thought...

Face painting stall sign – illustrated by Amanda Francey

One week later, I helped run the face painting stall at my children’s school fete. My son had been unwell with an influenza-like virus, but seemed to be on the mend. Many upper primary students were ill with the same viral symptoms and were away from school for a month or more.

During the days leading up to the school’s Jubilee fair, I felt a scratchy throat, tender swollen glands and achy muscles. I wasn’t allowed to be sick. There were no volunteers to replace me. I drank heaps of water and took regular vitamin c, zinc, garlic and horseradish tablets, and by Sunday, I felt like I had beaten it.

On Sunday morning, 11th of August 2013, while I was setting up the face painting stall, a line of eager children started to grow, thirty minutes before the school fete officially opened. I decided to get a head start. However, the line continued to grow and didn’t let up for the entire day. I had helpers happy to do hair spray and tattoos, but not enough volunteers confident in the face painting department. I didn’t have time for a lunch break or even a toilet break. Many of the tired little faces I painted were flushed, feverish with runny noses. It was impossible to avoid being coughed and sneezed on while sitting only inches away. On top of absorbing droplets from multiple viruses, I was inhaling hair spray chemicals all day, as it blew into our enclosed tent with the help of the blustery August winds.

The next morning I felt exhausted – understandably so – but no more than expected. I dropped my younger children off to their classrooms, then finished sorting out the brushes, sponges and paints before returning them to the school store room. I’d even planned to drive to the supermarket on my way home. 

However, while walking back to my car, my legs became heavy and overwhelmingly weak – like they’d been replaced with lead jelly – and completely gave way, leaving me feeling sore and dumbfounded as I sat on the footpath.

What the hell had just happened?

I had no energy reserve to walk just one metre more. Usually, I could push through the school run and the grocery shop no matter how exhausted I was, but this day I couldn’t. It took my legs time to regain enough strength to feebly lift my body to a shaky stand and shuffle a metre or so to my car, where I sat for a good 15 minutes before driving straight home and climbing into bed.

As the day went on, that weakness and heaviness was accompanied by muscle pain, headache, sore throat, swollen tender glands and a fever.

I hadn’t beaten that virus after all. My son hadn’t either. He had a relapse the following week. Fortunately, he made a full recovery over the next month.

I never recovered.

. . . .

After the first month or so of chronic fatigue and flu-like symptoms, my GP and I were confident that I only had post viral fatigue and we thought I’d recover within two or three months. However, during a family trip to Victoria, over the chilly September/October school holidays in 2013, I started to develop new symptoms. The joints in my fingers and toes became hot, swollen and painful and I started having frequent episodes of extreme joint pain and Raynaud’s phenomenon. This led me to a rheumatologist and more testing to reveal that I was developing an autoimmune connective tissue disease. 

My legs felt painful, weak and heavy as I struggled to keep
up with my young family along the walking tracks.
I felt like I was about to turn 90, not 40.

Despite the immune-modulating and immunosuppressive treatments (Hydroxychloroquine and Methotrexate) working wonders with calming down my inflammatory arthritis, the exhaustion, flu-like symptoms and dementia-like episodes after exertion, continued into 2014. Then an additional diagnosis of Myalgic Encephalomyelitis (ME) followed. Unfortunately, ME is still commonly referred to – along with various other fatiguing conditions – Chronic Fatigue Syndrome (CFS) in Australia due to shamefully outdated medical guidelines and research neglect.

While the jury’s still out on what causes ME, over 70% of patients report having a sudden onset after an acute viral infection. There are also historic reports of ME clusters of epidemic proportions after viral outbreaks.

Even through I felt 100% healthy pre-ME, I had developed autoimmune thyroiditis (Hashimoto’s and Graves’ disease) several years prior. So perhaps my immune system was already wonky. In my case, it's possible the virus I had contracted + multiple chemical/viral exposures + exertion from running the face painting stall = perfect storm to trigger further neuroimmune system deregulation and disease.

This was the beginning of my long journey of uncertainty and vulnerability of living with a chronic illness that has zip-all effective treatments. Since ME has been missing from biomedical research for decades – the last seven years have been a bumpy road to further deterioration – instead of recovery.

. . . .

This is part one of a three part story.

Part two describes my current life – seven years later in the midst of a pandemic – doing my best to articulate the gravity of this illness.

Part three investigates The Horrible History of ME, starting with medical misogyny and gender inequality, to the more malevolent motive by a faction of UK’s medical establishment for falsifying the WHO’s international guidelines and wrongfully reclassifying ME as “psychological fatigue”, to the discredited PACE Trial and the recent hijacking attempt of millions more “long haulers” by psychiatrists. Throughout this article, I will touch on how these factors will affect people with Long COVID, concluding with what we should do about it.

. . . .

Sadly, a percentage of long COVID patients may go on to develop an illness similar to ME, will suffer because of historical psychological prejudice and medical injustice.

It's in the best interest for all people who contract SARS-CoV-2 / COVID-19, or any other complex virus, in 2020 and beyond, for history not to repeat itself. This is why awareness and advocacy is so important right now!

Also published on Medium

. . . .

Amanda Francey

Writer and Illustrator

Amanda's children's book illustration career was rudely interrupted by Myalgic Encephalomyelitis and the usual co-morbid suspects.