In 2022, I became unwell, colleagues noticed I was not myself. I then began to experience seizures and other symptoms. Frightened and scared, I visited the hospital numerous times with late nights and no answers. I was referred to specialists and received the diagnosis of Frontal Lobe Epilepsy. This began my journey of learning to live my life with a neurological condition.
Frontal Lobe Epilepsy is commonly caused by abnormalities in the brain. My seizures are caused by brain lesions, with a 2/3 chance of a brain tumour. I got the dreaded call from my doctor to “come in ASAP with a support person”. As a nurse who has worked in treating neurological patients and patients receiving biopsies, I was sh*t scared and spent the next few months in survival mode, trying my best to live a “normal” life. At this point, I was 9months into my fitness journey and 5 months into bodybuilding aka I'd put in a lot of work! The gym became a distraction from being unwell and my total focus. I was continuously asked why I didn’t take time off work, why I didn’t slow down in the gym. There were moments where I’d break down and think “why the f*** am I at work when my future is questionable” and get upset I couldn't push myself hard in the gym without having a seizure. However, unknowingly to my patients, they inspired me to continue. I saw them at their worst and at every stage of their journey, from diagnosis and despair to resilience and building their lives back. I had patients with what are considered debilitating diseases, who AFTER their diagnoses, competed in Ironman WORLDS, ran businesses, ran ultramarathons and continued to do everything they loved. If they could do it, why couldn’t I? How could I continue to treat and give hope to others with neurological conditions, if I didn’t even believe in myself? When people ask how I got through the early stages, and continue to live my life to the full now even without answers, my answer is simple: You have a choice every day to either LIVE the life you want to the best of your abilities, or choose to live in suffering and choose to be a victim. In saying this, not everyone has, or will regain, the ability to live the life they want. There are people out there who don’t have hope or who are going through the despair stage. As there are over 700 different neurological illnesses, with 1 in 5 kiwis being affected, everyone has their own unique experience. This fundraiser is for hope and to allow NFNZ to continue vital research to provide treatments, and hopefully cures, that bring quality of life to people living with or and affected by neurological illness. It affects everyone.
The challenges I face with bodybuilding with FLE include physical, mental and hormonal fatigue (will differ as I knuckle down into prep with no way of knowing how my body will respond), confusion, altered balance and sensation, seizure threshold and learning to differentiate between an aura or when I’m genuinely being lazy! There is also the unknown of neurosurgery and upcoming specialist appointments.
This is something I’ve kept very quiet, but with the support of the Neurological Foundation of NZ and Epilepsy NZ, I have found the courage to speak up and raise hope and awareness. If you have self-doubt, are dealing with an illness you fear is restricting you, or have a loved one dealing with neurological illness, reach out and let's tackle it together.
Mum & Dad
Proud of you daughter
Xarvia you coming forward is so courageous and inspirational. So very proud of you.
On behalf of my mum who loved Peter and Anyas kids x
Good onya Xarvia
Mandy & Darryl Olverson
Thank you for sharing with us the health challenges you are dealing with and your amazing, positive attitude towards getting on with your life. You are inspirational Xarvia. Keep building those strong muscles and a healthy mind.
Sarah Jane Perkin
Kia Kaha Xarvia ❤️❤️
You go girl 💪🏼
You are a true inspiration!! You are an amazing and strong lady! I wish you well xx
The Walker Family
Superb👍 Great work.
Sending lots of love my friend ❤️
Kia kaha Xavia 💕
Sending my love to you xx
Arohanui xarv x
We are so proud of you. Xx