Tiarne was a busy, active mum. Then one day she went to work and couldn't feel her legs.

Imagine waking up one day and not being able to lift or feel your legs; you can't read or hold a book. You can't sleep because you are in too much pain. 

Yet, the next day you can walk a short distance, read and watch TV, even go outside to socialise. This is what it's like to live with Functional Neurological Disorder (FND).

According to Professor Jon Stone, Consultant Neurologist, Royal Infirmary of Edinburgh and University of Edinburgh, UK, "FND is a problem with the 'software' of the brain. Scans are usually normal. When people with FND hear this, they often wonder if the doctors are suggesting they are 'imagining it'. The simple answer is 'No – you are not'. 

"FND is due to a problem going on in the brain at a level that people CAN’T control – just like migraine." 

Watch: Everything you need to know about Functional Neurological Disorder (FND). Post continues below.

I was a full-time public servant, studying part-time and could go hiking, running, swimming, and socialise with friends, not worry about using too much energy and was able to be a loving and supportive wife, sister, co-worker and friend.

Then, on November 28, 2019, I arrived at work as usual, experiencing some left leg pain, which I assumed was caused by running on my treadmill earlier that week.

But walking down a flight of stairs, I suddenly started experiencing numbness and pins and needles in the same leg. By the time I got to the hospital, I couldn’t feel or move my leg and then by the time I saw a doctor, I'd lost sensation in the entire left side of my body.

Overnight, I began to experience incontinence. I had to wear an adult pull-up and use a catheter. After multiple tests, I was told that I had FND. My neurologist gave me a piece of paper and said to look at the website, and I will be back tomorrow if I have any questions. 

I was in a leading hospital for two months and then a rehabilitation hospital during bushfires and COVID in Canberra, ACT. While I was trying to learn to walk again, disaster struck. Suddenly, my entire body was completely paralysed from the neck down.

They were the three scariest days of my life. Since then, I’ve had seizures, strokelike symptoms, bowel accidents, difficulty swallowing, fatigue, brain fog, forgetfulness, ticks, neuropathic pain, anxiety and PTSD.

Since having FND, I haven't been able to work; I use a wheelchair and wheelie walker and need help to shower and get dressed. I use the National Disability Insurance Scheme (NDIS), and I have support workers the same age as my eldest son come and look after me. I can't drive, do housework, pick up my kids from school, go to the supermarket or venture outside without help.

Image: Supplied.

My husband, Anthony, is now my full-time carer, which has affected him in ways I wouldn't wish on my worst enemy. Even though it has been three years, we are still trying to manage the carer/husband role. It is hard, very hard.

FND has affected my three children. My nine-year daughter Bridie wishes I could 'go back' to how I was before having FND. Ryder, my 15-year-old son, always looks out for me and worries whenever I am unwell. Riley, my 19-year-old, has had to help me shower and dress me, plus look after his siblings when I haven't been able to.

FND has brought us closer as a family, I don't have the added stress of work, but I no longer have a career, and I am now medically retired at 43 years old.

My treatment is ongoing with various medical and allied health professionals, including psychologists to deal with my low self-esteem and depression, a neurologist for continuing treatment such as pain relief, occupational therapists to help with various equipment needs such as wheelchairs, an electronic bed to help get in and out and shower chairs. 

FND and functional neurological symptoms are surprisingly common but difficult for patients and health professionals to understand. The medical system needs to change how people are treated. We are told we are in the too-hard basket, saying it is all in our head or we are faking the symptoms. I have no control over how my body reacts and shouldn't be treated as such. I wouldn't be faking my symptoms; I have lost so much of my life and wouldn't wish this condition on anyone.

FND does not discriminate. It could happen to anyone, at any time, without warning. Everyone has different symptoms.

I have met some amazing people from the various FND support groups via social media. They have been on my journey from the beginning, and I appreciate everyone one of them. Please check out:

• FND Australia Support Services – the only FND Australia Organisation/Registered Charity.
• FND Podcast

I'm unsure of the future, but I hope to start a counselling business that helps people with FND and chronic pain. 

FND is only a part of me. It’s not who I am. We are learning to live together, just one day at a time.

Feature Image: Supplied.