My FND reality | Talking to Jacinta

Jacintas written piece posted with permission by Jacinta:

FND is not a simple disorder that can be easily explained not easily described with the impact it makes on ones life.

To most FND, in full known as functional neurological disorder, is just a medical term used to describe a number of symptoms that have so much variance and debilitating effects. Three little words that just makes up a name to some but to me and so many others, seen as a disorder that has made a dramatic change in our daily life as we once knew it.

In simple terms I have no hardware damage to my brain but more so software issues, the messages the brain sends are not always sent in the correct way resulting in havoc around the body. Describing it in these terms makes me think if only I could go down to the local I.T shop, get a reboot and upgrade of the latest program and be on my way! If only it was that easy!

FND has been an on and off element in my adult life, rearing its ugly head at times I never expected. I am a mum of 2 beautiful children and always prided myself on working hard to provide for my family. Nearly 18 months ago FND started to cast its shadow and from there my daily life changed. All my symptoms started on my right side and sadly decided to take away my sensation and use in both my legs, leaving me confined to a steel contraption daily, a steel contraption that is my lifeline to some form of independence. Apart from the list of other symptoms this has been the hardest to come to terms with in so many different ways. Self acceptance is one of the hardest lesson we have to learn in so many aspects of life.

FND decided to take a front seat in my life while I was left to be the back seat driver, yelling out my desires on which way I wanted to go but having no full control of the wheel, my destination being fully functioning! Every wrong turn I was like the child in the back banging on the seat asking are we there yet!

I have always been one to struggle with putting the exact impact of FND into words that has enough power behind how much this disorder has made such a huge daily impact.

This morning I woke, like many times before that initial wake up being separate to reality...... AND then it hits, that moment realisation starts flooding back that I still have limitations on my body that seem to be failing me, this hit of realisation hits hard and the tears began to well in my eyes. Suddenly my inner strength kicks in and I stop, in this moment i chose to make my emotions that come from the heartache of this disorder come to use in another form, I was going to use this emotion to capture how I felt about FND on an internal level.

I have always wanted to do an artwork to try and strongly show how FND can make us feel internally......but honestly I'm hopeless with a paintbrush or pencil and a stick figure wasnt going to cut it.

I decided it was time for some self love, to do something for myself to boost my confidence in this time of desperation. I pulled out a packet of hair dye, unravelling my hair I continued to colour my hair and let it sit. Then the time came to wash it out, watching as the colour washed out and covered my body I had a light bulb moment, it was in this exact moment I knew I had found my way to Express FND in a raw form. A way that showed clearly on the outside how we feel on the inside at times.

Being bare, vulnerable and feeling backed in a corner is how most of us feel when it comes to dealing with majority of the medical world and with those that simply dont understand the complexity of this disorder. Most of us are left to deal with our symptoms on our own, left to deal with the fallout and impacts of FND on our daily lives.

Our families are the ones left to help us pick up the pieces with every hurdle faced, left to help us find our worth in a world we cant quite comprehend ourselves, a world that seems to be just a continuous roundabout without any exits. The vulnerability on not only ourselves but our families comes in so many different shapes and forms.

The colour washing down from the head signifies to me the torment that comes from the confusion we face, the torment of a disfunctioning brain that then runs over your body and leaves its mark as the confusion washes down. The only difference between this picture is it can be seen, this inner impact cannot be always fully seen from the outside. The confusion of the brain can be a really hard thing to compute but the confusion doesnt stop there, it continues down throughout our bodies and creates havoc in many different ways. Your life as you knew it just washes away, everything is left to feel like a washed out mess.

While everything feels so lost I am proud of who I am! I've learnt about so much inner strength inside me that I never realised I had! Once your only option is to be strong you realise how much that shines within you. With every set back, with every hurdle, with every year, I still find the strength to find an acceptance in myself and push forward.

I beg of you all to reflect, to reflect on how everyday functions allow you to do what you do. Just simply standing in the shower, being able to drive a car, being able to kick a ball with your children, to work and provide for your family without limitation, these are all things we take for granted and dont think about! Be grateful in all you do, in the time you have with family and friends because having gratitude is something we should all reflect on regardless.

To all my FND warriors, the struggles are real, the hurdles faced are some of the hardest we have to conquer, the realisation of our bodies failing us are hard to face both physically and mentally. FND may have changed our daily lives, it may have made us feel vulnerable and misunderstood but dont ever feel you are alone in the fight for hope.

Be kind to yourself, be kind to those strong souls that see the suffering but still hold our hand along the way.

Most importantly dont give up the drive or determination we all fight with to get back to fully functional.

FND may have changed your daily life, it may have put limitations on you but at the end of the day you still have the same heart to shine through your soul and out into the world. We are all stars in the dark night of all that is FND, stars need the darkness to shine!

Dont ever forget your inner strength, your inner beauty or who you are.

Stay strong, keep fighting for hope and keep shining.

To Purchase FND Shirts Hoodies and Bags go to website :

https://imprintmerch.com.au/collections/lets-have-the-chat

Proceeds go to FND Australia support services.

HELPFUL RESOURCES:
A website all things Functional neurological Disorder written by Professor Jon Stone who is the leading FND researcher and Consultant Neurologist in Edinburgh, Scotland.

https://www.neurosymptoms.org/

Youtube video: What is Functional Neurological Condition By Dr. Phil Parker. A great thorough explanation of FND and the updates of FND.

FND ORGANISATIONS:

https://www.fndaus.org.au/

FND AUSTRALIA SUPPORT SERVICES INC: A wonderful resource for people in Australia with FND: from reasearch into FND, finding medical specialists and services and just information about FND. Solely dedicated to all things FND and helping those with FND in Australia.

https://fndaus.org.au/

FND Action: FND Action is a patient-led charity who offer a caring and supporting hand to people living with Functional Neurological Disorder (FND) in the UK. FND Action provide support to those diagnosed and their caregivers by hosting online support groups, an informative website and actively advocating for the cause.

https://www.fndaction.org.uk/

FND Dimensions aims to develop a network of ‘peer support groups’ across the UK either in face to face meetings or online via methods such as Skype. By bringing people together on a regular basis, this helps alleviate the isolation that many FND patients feel. It also gives opportunity for others to open up dialog and to talk to others in a similar position about the day to day challenges, issues or concerns with one another.

http://fnddimensions.org/