Hello Rebel Souls!
In May 2023 I couldn’t have imagined that what started as a pain in my neck/shoulder would turn into full body pain, not being able to use my left arm and hand, issues with walking and not being able to walk, seizure like spasms, fatigue, nausea and vertigo, cognition issues, sensory issues, and brain fog. As the symptoms progressively worsened, I was no longer able to work and left my role as a Youth Worker, was no longer safe to drive my car, and was unable to continue hobbies I enjoyed such as dancing and playing guitar. To leave the house I started taking a walking cane, and if it was going to be a bigger outing, I’d use a wheelchair. With so many changes and losing my independence, relying on others to take my kids to and from school, unable to help with household chores and cooking, unable to get to appointments without assistance, my mental health would suffer off and on as I tried to process what was happening to me along with grieving everything I had lost.

I’d like to add in here that if it wasn’t for the support of my husband, kids, family and close friends I don’t know how I would’ve dealt with the past eight months. My husband and two kids haven’t only had to watch their usually independent, organised and positive wife/mum deteriorate, but they’ve all had to pick up the slack and take on roles that I would’ve usually filled.

I had many blood tests, MRI’s of my brain and spine, CT’s of my spine which all came back clear. This ruled out anything degenerative or life threatening so in the eyes of my doctors I should be completely healthy but still my condition worsened. After a hospital stay, I was finally referred to a Neurologist in Brisbane, but when they observed my clear results, I wasn’t marked as a priority and had to wait until last week to finally get some real answers.

Close friends made a huge effort to support me and take me to Brisbane to see the neurologist and I will be forever grateful for everything they’ve done and continue to do to make sure I not only stay in good spirits but don’t give up.

When the neurologist said he was confident I had Functional Neurological Disorder (FND) it confirmed my friends’ thoughts as she had discovered the disorder a few months before and it had sounded so similar to what I was going through. It also meant that I finally had an answer for what was happening to me, and also a path forward.

So, what is Functional Neurological Disorder (FND)? In people with FND, the normal pathways their brain uses to move, feel, speak, walk, and think, are disrupted. There’s nothing structurally wrong with the brain, but the brain and body aren’t speaking to each other the way they use to. Why does this disruption occur? Specialists aren’t completely sure, but they do believe it can be brought on by some kind of stress or trauma.

What’s next? Medication for pain and to help me get some decent sleep. A physio program to try to ‘reconnect’ my brain and body, a neuropsychiatrist, and lots of work. The neurologist couldn’t promise I’d recover completely but he was confident that if I do the work, I will be able to improve my symptoms.

I’ve learned so much about myself over the past months. I’ve learned to let go of control, be in the moment, who I can and can’t rely on, how incredibly grateful I am for the life I live, and that I can choose where I put my energy. I’ve discovered new hobbies that are within my current ability, have used the mental health tools I’ve learned over the years and through my Youth Worker role, and that it’s okay to ask for help.

Thank you to those of you who have reached out, checked in, driven me to appointments, kept me company and brought me food and coke zero’s! I will try my best to keep you all updated as I work through the next chapter in my story.

Take care of yourself,

Linda x