Chronic illness is a curse, but I am grateful for the resilience it has taught me.
I have only now come to accept that pain will undoubtedly be a lifelong reality for me. Yet, the incessant suffering has given me skills I would not have otherwise learned such as an ability to persevere, be resilient and have courage, even when the pain feels unbearable.
I have been diagnosed with Chronic Daily Headache, Chronic Migraine, Chronic Fatigue Syndrome (CFS), Fibro Myalgia and Postural Orthostatic Tachycardia syndrome (POTS).
Roughly 240,000 Australians suffer from CFS like I do, and 4.9 million people suffer from Migraines, of whom 71% are women.
Migraines are not just a headache; they come in many forms, with examples located in the stomach, it can even paralyse the body. CFS is not just feeling overly tired; it reduces the ability to move, to think and to function.
Not having a bandage wrapped around my head or a sign saying ‘person with disability’ is a constant challenge because, on the outside, I am an average 26-year-old woman, but what no one sees is that I am constantly at war with my body.
When I was 15 years old, my CFS and migraines were so disabling, I struggled to walk to the end of my hallway or hold a fork to eat because my hands and body were shaking so badly.
I spent hours in bed, isolated, staring at the same part of the wall, contemplating whether I would make it through this or if I should just stop trying.
After an attempt to stop a two month long migraine, I spent my 16th birthday in hospital after having a seizure from the medication. I spent two weeks in two hospitals and three months away from high school.
I had been a violinist for ten years, having learnt from the age of six and had assumed it would always be a big part of me, but sadly I had to it give due to my increasing intolerance to sound, a symptom of my migraines.
At 16, I went from being awarded school colours – the highest award in my high school – to skipping class, dropping out of activities and staying in bed because I was so consumed by my illnesses.
I went from dreaming of having a successful career to dreaming of being able to live a normal life. I lost friends and lost myself.
My symptoms vary: migraines with aura, band headaches, crushing and sharp headaches, sound sensitivity, extreme fatigue, tremors, difficulty with speech, difficulty with concentration, bodily pins and needles, aches and soreness, restless legs at night, fainting, blood pressure drops and tachycardia.
I often have a mental fog and struggle to link thoughts together. It’s as if that connection is missing. I am in constant pain throughout my body, sometimes I can hardly move because it is so unbearable. Most of the time it isolates in my joints, knees and ankles, keeping me up at night and making it difficult to walk.
I have not had a day without headache for 12 years.
I can get migraines for up to six weeks, without pause or reprieve. My latest episode of never-ending migraines had me in bed for six weeks straight.
My most recent episode was so extreme it caused paralysis throughout my entire body lasting for four hours. I kept trying to tell my arm to move but it would not respond, my body was completely limp. I had no physical control and was terrified.
I get remedy questions often. “Have you tried taking some Paracetamol?” I just laugh, I have gone far past Paracetamol; it is like drinking water to me these days.
Just last month I had to have six injections of steroids (one excessively big injection in six locations) into the back of my head to see if it could break the vicious cycle of migraine. It didn’t work.
Yet another treatment for migraines is Botox. I’ve had 34 injections of it into my head, neck and face. I would go in feeling my version of normal and come away hardly able to stand or handle sound; my whole body would like feel lead and I would be close to fainting, drifting in and out of consciousness.
I have tried preventatives and remedies in different forms of injections and pills (currently I take six pills each day), which all come with different side effects including severe fatigue, reducing the ability to concentrate, rashes, nausea, weight loss, weight increase and numbness.
I often feel like the medications create more problems than solutions and am constantly disillusioned each time they don’t work.
Pain sufferers understandably find themselves falling into a mental cesspool and it takes a ridiculous amount of effort to fight depression and pain at the same time. I have visited many psychologists and psychiatrists to help find ways to fight the associated depression caused by the chronic pain.
A simple greeting such as, “How are you?” becomes a loaded question. As Katie Brebner Griffin, Social Policy Analyst, says in her article for ABC, “Things not to say to a person living with chronic pain”, responding to this type of question “often feels like I chose the wrong answer — either I’m being negative, oversharing, or I’m shutting people out.”
Even though it seems overwhelming I feel that these challenges have taught me resilience, which have served me well throughout Covid.
Chronic illness involves constant periods of isolation. While others struggled with isolation, I welcomed it, because I have been through multiple Migraine and CFS related isolations in the past and knew how to handle it. I found myself thriving in the lockdowns because I was my version of well and used the time to improve myself, which is in direct contrast the my self-imposed health related isolation which locks me in bed for weeks on end.
Covid 19 enabled me time to breathe without the feeling of being crushed under the weight of constantly failing and not living up to expectations or fulfilling commitments, because everyone else had been knocked down too. The difference was, I noticed myself getting back up faster.
With my conditions balance is everything, except balance is also the harder concept to achieve. Too much exercise can cause a crash, too little can perpetuate symptoms, making them worse.
A change in medication can cause a four-week migraine, if I’m feeling good I have to be careful not to overdo it, when I am feeling dreadful I have to push myself into moving because everything with my health has a cost.
Although I have had to learn about balance in my life through my illnesses, I have realised that it is a universal skill to learn, not just in relation to health.
Through all my experiences with isolation, sickness and pain, I am learning. From not being able to walk to the end of the hallway, I walk 5km easily, from scarcely being at school, I am close to finishing a degree. I have travelled extensively in defiance of my health-imposed lockdowns.
I refuse to allow illness to define me and believe that what I am learning, and will continue to learn from the constant struggle, is just as valuable as being well.
If you or anyone you know needs help:
Lifeline on 13 11 14
Beyond Blue on 1300 224 636
MensLine Australia on 1300 789 978
Suicide Call Back Service on 1300 659 467
Kids Helpline on 1800 551 800
Headspace on 1800 650 890
QLife on 1800 184 527
Relationships Australia on 1300 364 277
ReachOut Australia
