Two and a half years ago, I said to my husband how fortunate we were to have a family with so few health issues. Only the standard colds and viruses picked up at school (I’m a teacher) and from our kids.
We lived in beautiful Coogee, spent sunny winter days at the beach and though we faced the normal exhaustion and frantic pace of life that is parenting and working in Sydney, life was pretty awesome.
In August 2015 everything changed.
After a long-awaited, eagerly saved-for trip to the snow, all four of us came down with influenza B. Everyone recovered, but my downward spiral into Chronic Fatigue Syndrome/Myalgic Encephalitis, reactive arthritis and fibromyalgia began. When it first hit, I hobbled into the doctor’s office like a 90-year-old.
Over the next five months I was making weekly trips to my amazing GP, or any one of five specialists, in the most excruciating pain I have ever felt. And I’ve had two kids. Childbirth was a breeze compared to this. If doctors offered frequent flyer points, New York, New York baby!
My rheumatologist said it would all be over by January 2016. A bit of post-viral fatigue and reactive arthritis, no problem. End date in sight. Thanks to a serious amount of medication, I even climbed up mountains at Thredbo over the summer holidays. MOUNTAINS. See, look, me on a mountain. All I had to do is was either go for a swim or clutch ice packs in my hands or put them on my feet and I could generally cope with the pain and so I soldiered on. I’m a mum and a teacher, it’s how we roll.
It probably should have been a clue to slow down when I made three trips to emergency over two months due to the agonising fire in my bones. Describe your pain, they said! Like I've been kneecapped, there’s fire and knives burning in my feet, hands, upper back. It's like waking up each morning feeling as though I had slept on a slab of concrete - with nails?
But hey, kids and life don't stop, so neither did I.
Then, the fatigue. By April of 2016, I crashed and burned. Every day I came home from teaching, picked up the kids, put dinner in front of them and lay on the couch while they ate, or ... put them in front of the TV to eat (#mammaguilt) so I could lie in bed in darkness, ice packs on my burning feet and hands.
I had nothing left for my kids. I was physically and emotionally drained. I turned into a cranky, sad, pain-wracked shell of a mother.
Weekends became recovery time spent in bed, trying desperately to regain energy and finish off whatever teaching admin I could. My social life vanished; my husband and kids made it to birthday parties, the beach, church, picnics, went on bike rides, and lived it up. The girls started to ask, "Mummy, are you coming?" every time they went out.
A little piece of my heart shattered every time I said 'No'.
Listen: Being chronically sick turned Sylvia Freedman into a warrior for other women (post continues after audio...)
On May 12th, it's #millionsmissing day, because Chronic fatigue/ME sufferers go 'missing' from their lives. It's a devastating illness for individuals and families. Incredibly, research published in the past three years has found that CFS/ME has significant metabolic and autoimmune components - it's not going to be 'cured' by positive thinking or exercise therapy.
In Australia alone, there are approximately 100,000 sufferers, and full recovery is rare (5 per cent). There's little research funding allocated by the government, though we desperately need it. It's a long and often futile struggle to get any welfare support - even though many of us can't work - as it's regarded as a non-permanent condition. This is due partly to a study published in 2011 that fudged its results.
I kept working as a teacher until the end of 2016. In consultation with my GP, rheumatologist, and fatigue specialists, we had whittled down my work hours to the equivalent of one day a week with rest days in between, where I either lay in bed or went to doctors appointments or did the 10 bazillion other things that having two children and being a teacher involves.
Yet it was all still too much. We have amazing supportive friends, church family and neighbours who epitomise everything about strong community, but they couldn't be the mother to my children. They couldn't know that miss 5, when she's upset about something, will come out to the couch for a cuddle after bedtime. They couldn't help my little ray of sunshine 7-year-old who was struggling with being teased because of her orthodontics. Or that doing ballet fills her with happiness.
They couldn't choose the right kind of noodles - soba, not udon - for the girls' favourite meal. Or that the energiser bunny that is our five-year-old needs a good half hour on the trampoline every night to wear her out.
I have now become one of the missing millions who have had to stop working, and struggle to complete the basic tasks of daily living. Yet thankfully, I have become more present for my girls again, and have even been able to go to some kids' birthday parties #goals. I have to pace myself; rest breaks after each activity during the day, of 15-20 minutes in a dark quiet room, and yes, it's boring. The girls sometimes write me to-do lists, and they even include rest breaks in it. #funnynotfunny
I work a little from home. I'm doing neuroplasticity training to change the effects of chronic debilitating pain and fatigue on the brain. I follow a super healthy, low/no sugar, no gluten or dairy diet. I take ridiculous amounts of medication and supplements just to remain functional. We have moved back to Melbourne just this week to be closer to family support, leaving our beloved Coogee and seven years of friendships behind.
My life has changed beyond recognition. Now, all I want is to be able to answer the question I heard all last year "Is Mummy coming?" with a "Yes", and walk out the door to take on life with my kids.
For more information on CFS/ME, or to hear more from Alison, visit her website.