Back on June 26, I told of my introduction to the invisible illness, known as ‘Functional Neurological Disorder’ with “Once Upon A Time….Living With Invisible Illness”.
Once Upon A Time…..Living With A Body Filled With Invisible Illness. – A Barefoot Goddess On A Journey
They were dark times…….many days filled with limb spasms, seizures, falls, lots of falls caused by chronic balance issues. Living with symptoms such as these, left me mentally, physically and emotionally drained and it seemed like no one understood. But, it really broke me when the paralysis down my right side occurred……I had to rely totally on those closest to me. Using cutlery was out, I had forgotten how to do my shoelaces up, my walking gait was non existent if I wanted to stay upright, but what made it worst, was that I could no longer crochet. Crochet was my thing….as it was something I could do…..when I couldn’t do anything at all, so not even being able to do that was like a nuclear bomb had gone off.
How was I going to get better…..how could I heal from this, those were my thoughts, constantly.
As, I had mentioned in my previous blog…..I was discharged from hospital with numerous referrals. A couple of weeks went on, when finally I began to receive home based NeuroPhysio to begin the process of helping me learn the art of ‘functional movement’. My home based physio, was wonderful. She pushed me but only as much as I needed. Over what would be four weeks, she enabled me to be able to sit and stand from my sofa, there was still wobbles and shakes but my brain was picking up signals from the body and I was making positive progress. Walking was very difficult and prior to therapy I only had been given a walking stick, which was pretty much useless. My home based physio was able to help me get a walker. Initially I wasn’t completely in agreeable to this mobility aid….but I soon found that it was a godsend. I could use it to help me progress my sit to stand. Using it to help teach me to formulate a walking gait was brilliant. Over, I think it was six weeks, she had really assisted my confidence towards mobility. Home based was then changed to centre based NeuroPhysio. I was lucky to be able to given another therapist that knew what FND was. From day one, we formed a bond. At the Williamstown Hospital where I was having physical therapy, I also began OT (occupational therapy) and thanks to my physio, I had an excellent OT plan created, allowing me to slowly build strength in my paralysed right hand. It was slow going. Some sessions, would see me move my hand, perhaps 5 cm along the table. But that activity caused such fatigue that I would sleep for a day and a half. NeuroPhysio was able to help me again help reconnect my internal software into knowing that to step I had to lift the leg up and down……up and down, again these sessions were also slow. It’s all progress, though and I learnt that even a little is the beginning of reconnecting my brains wiring to my body’s wiring.
In addition to the physical therapy, I began seeing a neuropsychologist. Again, I was sceptical how this could assist but as time went on, I began to learn that it was a spiralling of many things across my entire life that had caused my software malfunction. I had to work through the abuse that I had endured as a child and teenager as well as the many years living with the chronic combination of illnesses. I began to find that as my mind was being able to be cleansed of all the dark clutter that I had chosen to lock inside me, my body also was able to be cleansed. This psych work was working alongside the physical therapy.
I continue to use the physical therapies with the therapy to help the mental trauma, so that I can perhaps live the life that I most love. You see due to extreme fatigue and still requiring the walking frame for mobility when out n about I can’t work a ‘normal’ 40 hour job. I spend everyday working on healing, with the therapies that I’ve spoken about as well as using an adaptive yoga and meditation. I am also a vegan and I truly believe all my healing modalities are helping me to progress to those dreams and goals of living the life that I love.
Although I cannot work a normal job, I now act as a advocate and speaker for invisible illnesses. Each day, I get stronger I seek to add more objectives and goals for raising awareness, support and research for illnesses, such as FND. If you’ve been following me, you would have noticed that I am creating a ongoing campaign known as #lightingtheflame for #invisibleillness that works on shining a light on all unseen health conditions. My other campaign is #standingup4FND and that is fully focused on functional neurological disorder and will be linked to my future documentary and book.
Functional Neurological Disorder is an ongoing battle to overcome, as the symptoms flow in and out without any notice. Some symptoms can be lived with, others leave me severely impaired. This disorder, is a illness that very few know about and that includes the specialist medical fraternity. For I and many others across my country of Australia and many other countries worldwide to progress with our healing we need much needed awareness, support and so much more research.
I want us all to be able to walk together, so let’s bring a wave of kindness to stamp out the stigma that exists currently with regard to all invisible illness.