Hi, welcome to my blog.
I’m a 22-year-old living with moderate ME/CFS. I have attempted university twice (architecture and sociology) to no avail and cannot work. I’m not bed bound – but 70% house bound. My golden nugget is to accept this illness as part of your life now; this took me many years to do. When I accepted this, I started to move forward and let go of the past.
This blog is where I share the two things that nourish and sustain me – poetry and food.
My story in a nutshell
Late 2010 – The beginning
My drama class and I were preparing for our end of year play – we had created an extravagant masterpiece! And I was counting down the days until our performance; I was bursting with excitement and anticipation. Exactly one week before opening night, I was struck down with a virus – nothing had ever held me back or forced me to rest like this did. It was swift and brutal; I never fully recovered from these five deathly days. Not only did I miss out on this play, but I would soon miss out on more days and endless weeks of my life.
Firstly ‘it’ started with a gradual, yet consistent, decline of my ability function normally over several months. There was an overall physical and mental exhaustion. I began falling asleep in the car and bus after school and in the evening coming home from my drama classes in the city. I thought all this sleeping was normal i.e. part of puberty, part of my final 2 years of schooling – plus being involved in extra-curricular activities such as musicals, hockey and singing lessons; while also exercising, socialising and studying madly like the type-A personality I was.
However, this exhaustion persisted and intensified where it felt like someone had drained my body of its fuel and replaced it with cement – I couldn’t move no matter how much I wanted to. There was this weight that I couldn’t break; it was an invisible crushing that I couldn’t understand. That rest could not remedy. I reluctantly cut back on my hobbies, with hockey being the first to go – then acting.This cull also included canceling plans with friends and foregoing family events – socialising was a big part of who I was. This exhaustion spilled over into my schooling, despite my best efforts to conserve energy by minimising all the ‘extras’ in my life. More symptoms were rearing their ugly heads every day – but most importantly ‘brain fog’ or aphasia was affecting my concentration and comprehension abilities. I started falling behind at school for the first time, relying on extensions to scrape by.
2011 – Diagnosed
My symptoms now fully fledged, my doctor diagnosed me with having Myalgic Encephalomyelitis/Chronic Fatigue – I was nearly 16 (read The A-Z of ME/CFS.) Getting ready for school depleted all my energy; I would arrive at school dreading the next 8 hours. It was like I had run a marathon with the flu after being hit by a truck every day. As a result, I was missing two days of school to rest and recover. It was a vicious cycle until my year 11 coordinator told me to take two weeks off and to ONLY rest, which was challenging because ‘resting’ was not in nature (it still isn’t!). These two weeks recharged my ever failing batteries enough to complete year 11.
2012 – A living nightmare
I was now a shadow of my former self. Every part of my life had been affected by this disease; nothing about me was ‘normal’ or what you would expect for my age. After sitting one of my year 12 exams, the sheer amount of energy and concentration required sent my body into shock. When I got home I was I was in a feverish state – my skin ice cold and my body shaking like it was – 10 degrees. I rugged up in woolen blankets, jackets and bed socks – it was a 40 degree Aussie summers day. This was the turning point when I realised I couldn’t count on my body; if I were a robot I would have been destroyed for severe malfunctioning. You’re supposed to be energetic and care free; spending hours with your friends going to concerts, the beach, parties and living without having the weight of the world on your shoulders. I aged mentally and physically; my youth was robbed from me.
I learned to ‘put on a face’ for my peers, friends, family, and boyfriend at the time. When I was severely afflicted by this illnesses, I shut myself out from everyone and thing. I scared myself, let alone people who couldn’t comprehend why I had changed so drastically – but more importantly how? I led two lives; in public, I was the ‘Emilia’ everyone knew and loved. A girl who had boundless amounts of energy, lit up a room with her presence and contagious smile, had a wicked sense of humour; who was a sprinter, a blossoming actress, creative cook, singer, and adventurer. I was in love with life.
I put this face on for the days where it mattered, where I had to muster the scarce energy I had and brave the world. Then behind closed doors I was depleted, paying the price for pushing myself. This was the trade-off. I could spend weeks recuperating for going out for three hours with my friends. I was a soul trapped in a malfunctioning body.
When I didn’t have my ‘face on’ I could walk through a crowd without being noticed – I floated through like a ghost. I had retreated so far inside my body that I no longer associated myself with my birth name. That girl had died; I mourned for her and the life I once had. No one could have prepared me for what I was to experience in the years to come as I tried to create a life and identity with a chronic illness. Still to this day year 12 is a big blur, a smudge in my life’s chapters – probably because I was pumped full of medical cocktails and sleep deprived. Our bodies also have the ability to switch to auto-pilot as a coping mechanism. We move through reality with no connection. This could also explain the blanks in my life, when the pain became so unbearable, even for the toughest human to tolerate.
From day one I was born with determination and grit, which I think has pulled me through my darkest days today. But my poor mother, when she tells me of the things I did I just cringe. I despised the word no – this was, I will admit, the most probable trigger for my devilish outbursts. Thankfully, I grew out of my tantrums by age 9 and was reborn into a mature, sensible girl who won school awards, played hockey, ran in state cross-country marathons, rode her bicycle to and from school and cooked family meals for special occasions. I have maintained that little ‘fuck off’, strong willed and determined nature with a generous sprinkling of humour, which is what I drew from when I had nothing left. When I was questioning the worth of existing when I could no longer do anything; when I was a shadow of my former self.
What I did
I have been to multiple specialists and doctors, most proving to be a waste of time, energy and money. What I didn’t know at the time was that these medical professionals were not trained in managing ME/CFS patients. There was no treatment, no knowledge, and no understanding; but I was willing to try anything to attain even just a tiny piece of my former health. I’ve undertaken all the tests imaginable and been put on steroids, anti-depressants, OCP, DHEA, had b12 injections and taken packets of pain relief tablets – I was literally munching on them like chips. All this medication only left me feeling worse; it was a ‘band-aid’ treatment – suppressing the symptoms and ignoring the root cause (whatever that was.)
Therefore I took my health into my own hands. Through trial, error, and research, I have found what ‘lifelines’ that help me function and heal – these include seeing a naturopath, psychologist, massage therapist and osteopath while also doing nurturing and strengthening activities such as yoga, meditation, hydrotherapy and floatation. My diet also underwent serious restructuring as I had developed multiple food allergies, sensitivities and gut problems (including leaky gut.) Food has always been a big part of my life so I navigated around these issues and created food that is nourishing and soothing. I have adopted a holistic approach to recovering; I personally think this is the ‘gold-standard’ approach as our bodily systems are so intrinsically connected, it only takes one or two of our systems to be slightly off-beat for it to have a ‘domino effect’ on our body.
I volunteer once a week, alternating between two businesses – OzHarvest and a nursing home cafe. By doing this work it keeps me connected with my community, makes me feel worthwhile, I meet lovely people and I learn useful skills.
I continue to research the latest studies and developments in the ME/CFS sphere. I also research alternatives to medicine to help my body recover and function normally again; there is always something new, but most are not worthwhile.
I’m working towards my goal of achieving consistent health for 3 months straight.
At 15 I wished to hear another young person’s firsthand experience of what they went through, how they felt and what was ‘normal’ for this illness. ME/CFS is a costly condition; my biggest cost has been time – years of my life that I will never get back. Some people recover after a year or two – for others it takes years. I have accepted that this condition could be a lifelong companion. In saying this, it has gone into remission several times where I have functioned at 60-70% capacity without a cure or magic pill – these don’t exist. I hope some, if not all of what I share helps and even inspires.
Living a fulfilling life with ME/CFS is possible