I haven’t written a blog in a while. Life got a little rough (as it does!) But I’m going to share just a small part of that roughness, because I think more people need to be aware of the very heartbreaking and complex nature of an illness - Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. An illness Id never never really heard of, and an illness my daughter was diagnosed with at age 18 years of age. 25% of people with ME/CFS who are severely affected and they are bed and house bound. Sadly, for the last 3 years this has been my daughters experience. This is some of our story.
My daughter was the most energetic, passionate, creative person I knew. She was just finishing high school and about to go to University to study design.. a life path she’d worked so incredibly hard for. She was a well loved student, dancer, designer, artist and friend. She was the bubbly energy of all our family parties! I’d just finished single parenting 4 kids for the previous 10 years and had my van ready to go travelling. Freedom from responsibilities around the corner, and the celebrations of my kids flying their wings in my heart. But with her diagnosis came a very different reality...for both of us.
The years that followed this diagnosis have been ... well... cruel. Having a child with severe ME/CFS is like living some kind of torturous reality where you grieve every day the active, vibrant go getter child you once shared your life with. And begin your role as full time carer for a very, very sick young person, who can no longer do the most basic tasks like read, walk, cook, sit up, remember things, eat the foods she loves... she suffers in pain everyday... hidden away from the world in a dark room... for weeks, months... and now years. What made this reality even more excruciating is that for a very long time not a single doctor could tell us, what was wrong, what was happening to her... or if she will ever come back.
In the early days of her illness we saw about 5 different doctors, all who did not have a clue what was wrong with her. I would beg them to listen that something was VERY wrong, but we would leave those appointments often in tears, devastated, with no answers. She would endure relentless bouts of sickness, crashing for months at a time, only to temporarily recover before being hit with another debilitating episode. "It's just another virus," the doctors would dismissively say. Yet, deep down, I knew that couldn't be the truth. There was something VERY wrong.
Then, in 2021 she crashed so badly, that she didn’t bounce back and we were in total despair. We finally found a GP who knew what was wrong with her and he diagnosed her with “Severe Myalgic Encephalomyelitis.. (or Chronic Fatigue Syndrome .. which is an incredibly outdated term, but i'll touch on that later)
This diagnosis started a new world of unknowns about what had caused it. Was it triggered by her previous bout with the Epstein Barr Virus? Or her positive tests for Lyme Disease and Bartonella? (which opened up a whole other can of worms around how can you test positive for something that isn't meant to be in this country.. but that's a whole other blog!) But then... perhaps it stemmed from exposure to mold, trauma, her hypermobility, neurodiversity, or gastrointestinal issues? Maybe its a bit of all of it? Suddenly as a parent the world expected me to be a doctor, nurse, researcher, second brain, carer, parent, advocate and also smile and somehow keep my shit together. All whilst I slowly watched my daughter fade away before my eyes… with no answers to why or how to get her back. As a parent all I wanted to do was help her get better, all I wanted was the the answer, the science, someone to listen to my desperate pleas for help. And I all got was a world full of nothings. An overwhelming sense of helplessness. And a million experiments to try.
The reality of living with the complexity of this illness, alongside the myriad of unknowns (and rabbit holes to go down!) is that it takes an incredible toll on the person with ME... and their carers. Each day as a caregiver involves a relentless cycle of research, scheduling appointments, waiting at pharmacies, researching the myriad of medications, attending to household chores, cooking a whole new diet, working remotely, drowning in paperwork, applying for supports, being a second brain for someone and providing physical and emotional support to my daughter—who, on her darkest days, would just beg me to let her die. There are countless nights laying with her in bed grappling with pain, insomnia, and suicidal ideation, which would often have me crawling into my bed wondering if we should both just die. Because honestly .. is this now our life? Will anyone ever be able to help us? Is this going to last forever? No one knows, they say.
Ive asked countless doctors, specialists, ME Associations, therapists... how long will this last? Will she have this forever? They will say something like "ME/CFS varies in long-term outlook from person to person, some people recover or have a long period of remission... some will need to adapt to living with ME/CFS… some will get better, then get sick again later in life... the outlook is better for young people... There is a lot of unpredictability and a lot depends on severity. But the fact she is young in on her side"
This response just send my brain into a blur! How am I supposed to find hope in that? Where are the facts?
So naturally, I have felt an incredible amount of anger and despair over the last three years. I’ve spent hundred of hours researching the illness and potential treatments and thousands of dollars trying things. At the end of the day, what I have found is not very comforting. This is the least funded illness in regards to research. Despite its significant impact on quality of life. ME/CFS receives disproportionately low research funding compared to other diseases with similar or lesser prevalence. This lack of funding blocks progress in understanding and treating the condition. The Centers for Disease Control (CDC)and Prevention and the National Institutes of Health (NIH) both confirm that ME/CFS is indeed recognised as one of the most debilitating illnesses, significantly impacting patients' quality of life.
Numerous scientific studies, medical journals, and reports from reputable organisations specialising in ME/CFS research and advocacy back this. A study published in the "Journal of Health Psychology" in 2018 titled "The health-related quality of life for patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)" states clear evidence and insights into the challenges faced by ME/CFS patients and their diminished quality of life. The study delves into various aspects affecting the daily functioning, well-being, and overall quality of life of ME/CFS patients, shedding light on the severity of the condition and the need for improved management strategies and support.
The impacts of the lack of professional understanding, the lack of scientific research and public awareness also means that going out into the world can be hard and incredibly isolating. When I tell people my daughter has severe Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, people generally look at me blankly, including many Drs and specialists. One of the few doctors in the world who understands this condition is Dr Nigel Speight, states that calling this condition Chronic Fatigue Syndrome its a bit like saying people with Alzheimer have "chronic forgetfulness syndrome!" Labels need to match reality of conditions! Because honestly this impacts deeply on the people living with this and carers, more than anyone will ever know. Chronic Fatigue Syndrome in no way describes the complexity of this illness. Myself, and many parents and carers I have had contact with, are so tiered of explaining the true nature of this illness to every single person we come in contact with. It just adds to the exhaustion.
Ive had to find a place with this that feels survivable... because its actually impossible to live with this illness and also be responsible for educating the entire community about it... so now if I have to explain our situation to someone (like in the situation below, explaining why my daughter needs to lay on the floor in waiting rooms for appointments...as so many places do not have appropriate chairs!) I might say something like, my daughter has severe ME/CFS, which is a neurological condition/disease (as outlined by the World Health Organisation) I probably won't say all of this... but the reality is it is a severe neuroimmune, nueroinflammatory disease affecting the immunological, neurological, autonomic, mitochondrial, endocrine, connective tissue, and energy metabolism systems. It is a multi system illness. Fatigue is only ONE of the many debilitating symptoms. She has a list of diagnosis's including Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation syndrome (MCAS), Gastrointestinal disorders...and many other labels...that are all a part of the ME/CFS. Which means every single part of her body is impacted.
After 3 years of living with this, navigating the health system and adapting to our new life, we have more of a handle on how to care for her ME. We have moments of more stability. She carefully paces her day to manage her very limited energy, she lives by a daily routine of a strict diet, meditations, supplements, medication, small amounts of movement, doctors and specialist visits and micro rehabilitation that has become a way of life. I work from home and continue to care for her and provide daily supports. And she navigates a daily tightrope to avoid triggering Post Exertional Malaise.
Post Exertional Malaise/PEM is a hallmark symptom of Myalgic Encephalomyelitis. It's the worsening of symptoms, often severe, following physical or mental exertion. It is totally disproportionate to the activity, it has a prolonged recovery time that may last days, weeks or months... and it can be absolute hell. What's incredibly tricky with this is it can occur immediately after the activity or it may have a delay of hours or even days, making it incredibly hard to navigate. A full PEM crash could exacerbate her symptoms and leaving her incapacitated for months. Therefore every step she takes must be carefully measured to prevent triggering this response. The fear of experiencing excruciating pain and total shutdown is present constantly, making even the simplest activities delicate ones. However despite this, she courageously and cautiously ventures to increase her activity level, all while acutely aware of the potential consequences.
Sadly, sometimes this has gone terribly wrong. Like the day we felt she had been doing really well and things were picking up, so we carefully took her for a swim at the beach. She had only been out of the house 4 times that year and she was desperate to see the water again. Sadly this lead to a crash and her being bed bound again for months after, only able to shower every few days, go to the bathroom and she suffered extreme amounts of pain and fatigue that had her wanting to end it all. We have now learnt to go much, much slower. Its like a weird reality that often doing less will give you more... and then with that little more... do a little less ?? Weird and confusing right! But if that's what it take to avoid a living hell.... then that's what we do.
With this approach her window of wellness is widening very slowly. She has recently built up her capacity to be able to walk 5 minutes most days in our backyard. These are the glimmers that keep us going.
She’s still mostly invisible to the world outside, she missing from many family events (and photos), and she has spent many celebrations alone.... but on good days she can now spend a short time in contact with the people she loves and she spends much more of her day out of bed. We get glimmers that she might be improving, but I can tell you as a parent after having hope stripped away from you time and time again it can be hard on the heart getting too hopeful...especially when PEM looms around. Hope can quickly turn into despair and complete heartbreak. So I now hold a more cautious hope. A slow kind of hope. That in time her glimmers of life will widen… like a slow sunrise. We live with a deep appreciation for each moment of steadiness... and Im in awe of how far she has come...both in living with this, and her acceptance of all that has changed.
We wanted to share this blog because we want the world to never forget these people, particularly the young people, who are fighting for their lives… and a quality of life... Every. Single. Day. They have lost their dreams .. and they don’t get a clear path of whether they will recover or not… or when… how long it will take .. or if that recovery will last. You will never see these people on their worst days, as they are hidden away in dark rooms, but they exist and their lives matter. I want all the parents, partners, carers whose lives, hearts and souls have been forever changed by this illness … to know that their lives matter too. What we are living with right now, in regards to how this illness is completely misunderstood and uncared for, is not ok. It’s completely neglectful. The uncertainty surrounding the prognosis of ME/CFS, the lack of clear paths to recovery, and the absence of clear science and well funded research only compound the challenges faced by the people living with ME and their carers.
My daughter and I have a lot to be grateful for. We have a home, we have friends and family .. and Luna our lab. We have a close connection, we laugh, and we find many moments of joy in the simple things, like candles, clean sheets, good food, cups of tea and a good series that will make us laugh and cry. And Luna is a brilliant caretaker. But what we really want is more research and more support in the community to match the need Especially supports like NDIS being more accessible to this community. The first 5 years of an ME/CFS diagnosis turns your entire world on its head. People living with ME need this help for their quality of life and dignity. Parents caring for their kids and all carers need this help for their survival. This is not a game. The suicide statistics in this community are very high. Everyone living with ME/CFS needs to know that their life is important and that they are seen, heard, believed and that their quality of life matters 💗
Lastly, my daughter is going to try a treatment overseas, as soon as she has the capacity to fly, which might be months or years away, but we want to treat the underlying Lyme Disease, as well as all her co-infections. Hopefully this treatment will support her body and brain in her recovery. It’s not guaranteed to work... yes, it’s another one of the million experiments to try. But when you are 21... with your whole life ahead of you... its one we think is well worth trying.
We want to thank every single person who has supported this fundraiser and provided support to give her this opportunity….hope and love 💗
Also if you are living with ME/CFS you will deeply know that the safety of the practitioners you see is paramount to your health and wellbeing.
Here are a few safe, well informed, services and resources that have helped us along the way
Exercise Physiologist - Emily Bland - ME/CFS POTS specialist
Active Health Clinic - ME/CFS POTS specialist
Occupational Therapist - Emma Tindil - Pivot Health - ME/CFS POTS and invisible illness specialist
Psychologist - Paula Sladdin - Chronic health specialist
Physiotherapy - Lyn Guy - Neurological and chronic pain specialist
Dietician and gut health - Joanne Baker
Merge Health - Dr Nicholas Morgan
Online support group for parents with young people with ME/CFS Australia
Author, A. (2021). Chronic Fatigue Syndrome: Most Neglected Disease, NIH National Institutes Health. Health Rising, 3 April. Available at: https://www.healthrising.org/blog/2021/04/03/chronic-fatigue-syndrome-most-neglected-disease-nih-national-institutes-health/
