I caught a virus and never recovered – PART TWO
|All Out Of Tears|
“My soaring spirit trapped inside a torture chamber that is my body.”
~ Amanda Francey, 28/08/2020
Over the last seven years I have felt my life become smaller and smaller – with each new limitation peeling away part of myself – layer by layer – since life as I knew it changed forever on August 12, 2013.
I caught a virus and never recovered.
I find it difficult to articulate the magnitude of living with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome or ME/CFS) and how it impacts my day to day functioning. Whenever I attempt explaining to doctors, family or friends, my words seem to minimise the gravity this monster has weighed upon my life and those close to me.
During the early days of being a chronically ill mother of three young children, I wasn’t warned about the dangers of pushing my dysfunctional energy production system. I suspect this is because my complex multi-system illness – classified as a neurological disorder by the World Health Organisation (WHO) since 1969 – was confused with ‘fatigue’ by well meaning doctors, myself and society in general.
The name Chronic Fatigue Syndrome is often misunderstood due to the poor choice of title, which solely focuses on the vague and unmeasurable symptom ‘fatigue’. Fatigue is just one of many symptoms of ME, just like it is with other conditions, such as: Multiple Sclerosis, Lupus, Thyroiditis, Diabetes or Cancer.
The research professors from Griffith University on the Gold Coast, Queensland, along with most international biomedical researchers, prefer the name Myalgic Encephalomyelitis (ME) – which is the original and correct name for it. It means inflammation of the central nervous system – brain, spinal cord – with associated muscle pain. Even the NIAID Director Dr. Anthony Fauci now refers to this condition as Myalgic Encephalomyelitis.
When you look at me, you won’t see the dysfunction of my energy production system. The word ‘fatigue’ doesn’t come close to describing what this feels like from a cellular level, when my muscles are literally screaming with pain as they fail to extract enough oxygen from my cells.
Washing my hair – while sitting on a shower stool – pushes me well above my anaerobic threshold, with my heart still pounding at 190 bpm five minutes after I’ve turned off the tap. Having a shower causes a build up of lactic acid, painful prolonged muscle recovery and body wide exhaustion. I can only shower twice a week because it can take days to recover.
Even minor daily activities – I’d never given a thought to – like changing out of my pyjamas, brushing my teeth, walking from my bedroom to the kitchen, each feel like a mountain to climb. I have to sit down when I reach the kitchen, while I struggle to unearth enough energy to eat a banana, or a small tub of yogurt, or – on a better day – heat up two minute microwave porridge. Most days, I don’t have enough energy to prepare a proper meal for myself, let alone my family.
Even after a good night’s sleep – not only do I wake up tired and unrefreshed – for the first four or five hours of the day, my whole body is in pain and my muscles feel weak and heavy. My throat is sore, my glands swollen and tender and I usually have a headache and the feeling of being hungover (despite no party the night before).
|Elephant and ME|
“It's like you're wading through wet cement, while tethered to a stubborn elephant.”
~ Amanda Francey, 20/04/2018
This energy dysfunction impairs my cognitive ability too. Reading a book, writing an email, filling out a form, or even writing a grocery shopping list is a huge struggle for me to focus on, all while quickly draining my energy. The same thing goes for talking on the phone or having a conversation with my family at home. Day to day stimuli that never bothered me before, can become unbearable. When there’s multiple input competing for my attention – noise, lights, movement, strong perfumes, more than one person talking – my awareness is overwhelmed and my energy depletes rapidly.
Prior to this illness, I had clear cognition and a lengthy attention span. I was highly organised, focused and motivated. My motivation remains, but is difficult to muster through this thick fog of acquired attention deficit and dementia-like forgetfulness.
This inability to think properly has crushed my creativity and ripped the core right out of my personality.
Writing this has been a slow process over many months. One thought at a time, jotted down in various places. Lost, forgotten and found again. Sentences broken with dots .... marking placeholders for those simple words or phrases like ‘let alone’ that I struggled to summon at the time. Then over weeks, I gathered, arranged and connected my muddle of words into this – hopefully comprehendible – piece of writing.
Another thing you won’t see, while I’m standing for five minutes or more, is the worsening weakness, leg pain, heart palpitations, head pressure (like my brain’s being inflated with an air pump) and dizziness I feel. My floppy vessels and veins grapple to squeeze blood to my heart and brain – like trying to clamber up through tubes of overcooked spaghetti – each time I stand up.
I have a form of dysautonomia, which is a common co-morbid condition for people with ME. My heart rate has spiked up over 200 bpm just emptying the dishwasher or cutting a plate of fruit. Sometimes, my heart rate will plunge to 40 bpm within seconds of being really high.
These trivial daily exertions, especially if coupled together, can cause a roller coaster of extreme dizziness, slurred speech, hot flushes, heart flutters, and body wide muscle twitching and tremors. My body creates extra adrenalin to compensate for my inability to generate normal energy. When prolonged, this can cause issues for me falling asleep. I feel wired with electricity surging through my whole being. All my muscles start to twitch – visibly rippling under my skin – and my limbs begin to jerk involuntarily.
Much of the day I am in bed with my legs raised and supported by pillows. This is the most comfortable position for me to rest between each minor household chore or activity. I can only sit upright for a short amount of time at my desk, to do basic household / family administrative tasks such as emails, paying bills or filling out forms. Each cognitive task forces my brain to work harder than it should – like an overheating computer about to crash – forcing me to stop and rest regularly.
I loved walking my dog through the bush tracks in the national forest behind our house, but I haven’t been able to do this for over two years. Not since my health deteriorated after a carefully paced family holiday in Tasmania. I must have walked a little more than usual. Now, just caring for myself and my family leaves me with daily rollover post-exertional malaise, which varies in severity from day to day.
Instead of walking, I try to spend time outside in the sun with nature. Usually lying on the trampoline with my dog, listening to the birds. Walking back up the stairs however, leaves me breathless, weak, shaky and lactic acid burns through my legs. So I need to lie down in bed to recover from this ‘relaxation activity’.
|Spending time with my dog at a much slower pace.|
Exercise and fitness have always been an important part of my life, but even gentle yoga stretching and strengthening is a struggle. I’m already pushing the boundaries of my energy envelope most days, just doing basic activities of daily living.
I’m pretty good with keeping up meditation and mindfulness (staying in the present, being grateful for the love around me and the beauty of my natural surroundings). Meditation also helps my body recover more efficiently between each physical and cognitive activity.
Prior to illness, I was always reliable, but now I can no longer be counted on to help out or fully contribute socially with family, friends or the community. I miss being a whole person, an equal companion and parental partner to my husband and being an abled-mother to my children. I wish my children could remember me as the healthy and energetic mother that I was to them when they were little. I feel that I’m losing a sense of connection from those close to me, because I can’t fully participate in my role as wife, mother, daughter, sister, aunt or friend.
I wish my children could remember me as the healthy and energetic mother that I was to them when they were little.
Adding to this, is the lost sense of productivity, creativity, accomplishment and contribution that I had from my career as a children’s book illustrator.
The devastation I felt, when my deteriorating health forced me to turn down illustration contracts from respected children’s book publishers, was heartbreaking. It’s not only the loss of creative process and accomplishment – I miss the rewarding feeling of mentoring young artists in the making. I’d planned to do more illustrator presentations, workshops and mentoring – once my youngest child started high school – which is over 18 months ago now, during which time, I’ve rarely been able to leave the house.
Further – I miss the children’s literature community – attending children’s book launches and celebrating achievements of those from our close-knit kid-lit group. I miss learning and being inspired while networking at local and national, author and illustrator conferences and social events. Now that I’m unable to continue creating children’s books myself, I feel a further loss of connection from this community, and from myself.
I feel an endless cycle of grief, when losing parts of my identity.
I recently made a one minute video about my experience to help spread awareness for ME/CFS. Music in this video was produced by: A singular Perversion - Darkness by Kevin MacLeod (see full music credit on YouTube).
Currently, I’m mostly housebound and only leave the house for medical appointments, or occasionally, if I need essential items from the shop or chemist, if my husband’s unavailable. Rarely, I see my family or close friends. I can go weeks or months between social outings, because it can take anywhere from a few days to a few weeks to recover. For this reason, I have to avoid leaving the house more than once in any given week.
Past experience has taught me, too much activity leads to a severe and prolonged episode of ‘post-exertional malaise’ (full body crash or shutdown is a more accurate description). Each ‘crash’ progressively worsens my baseline of functioning – and the more my illness has progressed from these crashes – the more trivial the activity has been that has resulted in yet another crash and further deterioration of my health.
Careful pacing of activities and meditation are the only feasible management tools I currently have available – to suspend further systemic decline – while teetering on the edge of a slippery slope towards severe ME.
. . . .
Today, while typing this from my bed, I’m trying to convince myself there is hope.
Hope for a research breakthrough, a successful treatment trial, an immune modulating drug. Hope an effective treatment will arrive in time for me to have a life. Hope that I’m well enough attend my son’s year twelve graduation this year.
Hope that if my children catch a virus, they will recover.
. . . .
This is part two of a three part story. Part three will be published shortly.
Part one goes back seven years, to when it all began and the triggers that led me down the rabbit hole of chronic illness.
Part three coming soon – covers the historical misogyny and psychiatry scandal, which led to no biomarkers or safe and effective treatments for people with ME today. And reveals the 1980s name change to Chronic Fatigue Syndrome was done intentionally to focus solely on the vague and unmeasurable symptom ‘fatigue’ – in the attempt to evaporate ME – thus stalling biomedical research for decades.
Sadly, a percentage of long-Covid patients, who may go on to develop a ME-like illness, will also suffer because of these historical mistakes and medical neglect.