Tag: health

So You Have A Diagnosis of FND……WHAT’S NEXT ?

Published on July 17, 2017 by abarefootgoddessonajourney3 Comments

So you’ve got a diagnosis of Functional Neurological Disorder! GREAT – but how quickly, that elation diminishes- well it did for me! I soon had many more questions than when my array of symptoms was initially being worked out.

So there I was, I had a diagnosis, that even my initial neurologist didn’t know much about. She sent me home with the name of a website, medications and lots of referrals. I was paralysed down my right side, unable to use my right hand, loss of balance finding it dreadfully hard to walk even small areas without falling, that was just the tip of the iceberg of what was happening to me! I was totally needing the assistance of my husband…..BUT, I had to wait weeks for my referrals to let the only known treatments begin…..and those weeks seemed to last a lifetime! The treatments did finally begin and yes, I have progressed well but I am still left with bouts of debilitating symptoms that would floor even the strongest of people.

Sorry to ramble, but this is a similar journey for so many people also affected with FND. It’s very frustrating, scary and lonely but finding a GP and neurologist that you can trust, so that you can keep an ongoing relationship with over time is so very important.

This is why, I’ve decided to go public….very public on my healing journey with FND. Everyday, I am involved in my treatments that include NeuroPhysio, OT, speech and psychological therapies. If that’s not enough to concentrate on, I am also beginning to create and launch what will be a globally known research foundation with a connected healing centre. I want to bring thorough research for more reliable ways, firstly for making the FND diagnosis. But I want to then, have a better platform for educating neurologists and general practitioners around the world about how to educate and connect appropriate treatments to suit individual patients. With a better platform for medical doctors, I feel that a much better awareness and support system will be able to be put into play for patients and their carers. There are a number of patient support groups popping up across social media now and I believe these are wonderful links to help people connect with others that are living with similar but different issues with the same disorder.

However, for me to be able to do this I need a bigger support network. Across, the globe there have been sports stars and celebrities, who have succumbed to debilitating diseases. They have helped awareness and research foundations for their particular medical conditions, set up amazing platforms. I don’t have that profile….but I do have the determination because I am a survivor of this condition and with your help out there, I know we can build people power in bringing what so many that battle FND need for healing health and life.

If you haven’t connected on social media, please do so and let’s beat this beast of a disorder;

Walking & Talking for ME and YOU,

Harmoni 💋

Part 2 – The Healing Journey With FND……..

Published on July 5, 2017 by abarefootgoddessonajourney3 Comments

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
https://abarefootgoddessonajourney.wordpress.com/2017/06/26/once-upon-a-time-living-with-a-body-filled-with-invisible-illness/

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.

If my story has helped you to understand the FND, please like and share this blog, or alternatively connect with me on social media at;

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.
Much love
TBG 💋

Once Upon A Time…..Living With A Body Filled With Invisible Illness.

Published on June 26, 2017 by abarefootgoddessonajourney1 Comment

Once Upon A Time……….

That is how all good fairytales begin right!!! But let me tell you all, this story aint no fairytale! This is my story of living filled with chronically invisible illnesses that many no little about….!!!

So let me begin……..

Once, I lived what seemed a normal life with normal dreams – I was living in the ‘burbs’ with my husband and five young children. My dreams were for health and happiness. I dreamt of us owning our own home, going on fantastic holidays and becoming a top financial accountant to help achieve the goals. For a time…..that was reality!

But, WOW – taking a trip back down memory lane, shows just how different life can turn out! That was over TWENTY YEARS ago, because gosh, I’ve been living a life filled with invisible illness for over 15 years NOW!!!!!

Invisible illness came to greet me through a journey that will be another story but as a taster I was introduced to lupus SLE, wegeners granulomatosis, ulcerative colitis, RA and run ins with a couple of different cancers. That journey found me, delving into many hospital visits and clinging to life numerous times…….

It was a battle……one continuous battle that had no end. With each fight, I would search for something new, some kind of healing magic that would allow all the pain, hurt and angst to be gone. The year 2015 came and the holistic modalities that I had been starting to use were beginning to help me – I was finding what is referred to as remission! I was able to open my own business – a holistic wellness centre helping others through coaching, teaching yoga and meditation. Life had a new set of goals and dreams…… The later part of that year, felt me tiring but I kept on pushing, Christmas 2015 came and went. The year 2016 delivered me an explosion that just went BANG! I wasn’t expecting it. I initially thought that it was just flares from the autoimmune and connective tissue illnesses…..but although doctors and specialists could see flares, previous medications and treatments were not helping these new symptoms. As more and more tests were done, I was growing more tired of all the pain and suffering. It was affecting my mood more and more as well…..to the extent that I began researching how to kill myself. I, of course kept this to myself just continuing to push myself knowing that something would show up in the medical tests. 2016…..April, May and June moved along….. my health was deteriorating with more and more strange symptoms that included balance issues and seizures…..but nothing could be determined by medical practitioners. July 2016, brought about a massive seizure leaving me unable to speak, a dropped face and paralysis down my right side. My husband wanted me to go to the hospital immediately…..but at this time, I was almost done with hospitals so I stayed at home. After a few days my face and speech did improve but I couldn’t walk…..the balance was as if I was on a tightrope and my walking gait was non existent. I went to hospital- immediately admitted! More tests over and over again! I had doctors and specialists surrounding me like flies on a hot day……but still no concrete reason! Late one afternoon, one particular specialist tipped me over the edge – as she left my hospital bed and ward, so did I with the real intention of COMMITTING SUICIDE!!!!
I didn’t make it out of those hospital doors because I fell and hurt my hip! I was helped back to my bed……and OH GAWD, if I thought I had doctors and specialists hovering aplenty before, now that I was on suicide watch – I was being hounded every minute but could they give me reasons for my seriously debilitating symptoms- the short answer was “NO”. They could only tell me that due to being chronically ill, I had depression but even though I was in a dark place that didn’t help me understand what was making my body behave in mysterious ways. Five days later after more and more tests, often ones that had been repeated and repeated my neurologist and her fellow walked up to my hospital bedside. They had worked out what these new symptoms were. Basically my internal software that allows communication between my brain and central nervous system had shut down……this they diagnosed as ‘functional neurological disorder’. I immediately had a million and one questions, almost all that they could not answer. With that diagnosis, I was allowed home…..discharged with a lot of referrals and a website to help me understand what this thing called FND was all about……

Awaiting my referrals being picked up, I spoke to my local GP, he was almost as much in the dark about what this neurological illness was as I was…..so we went on a journey of awakening together. What we deciphered was that FND is an umbrella term for a variety of neurological symptoms which current medical diagnosis models struggle to explain psychologically or organically. Patient presentation can be so very similar to a whole range of other neurological conditions. The symptoms of FND can be as debilitating as MS and Parkinson’s disease as there are many similar symptoms. It left me wondering if I was ever going to get the help I needed…..but at least there was hope coming through my doors again.

Soon, enough referrals came flooding in. Home care and the most important NeuroPhysio and OT. These referrals were music to my ears as I was learning almost everyday that due to FND being very new to the medical research fields there were not many effective treatment plans in existence. I began initially home based physio, in which I was given a walker. When NeuroPhysio began, I was very lucky to get a physiotherapist that had knowledge of FND and she quickly created a plan filled with physical therapies that would be most effective in bringing forward goals for reintroducing proper functional movement and motor control helping to retrain my brains pathways. She was able to work closely with my OT to help me dramatically improve functions that I thought were lost forever.

I have improved in many ways very quickly, HOWEVER I do still have a long way to go in the big scheme of life. I am continuing all the physical treatments as well as speaking regularly with psychologists and counsellors that are helping me to release so much allowing profound healing to begin. But it’s hard work, and it is the lack of understanding of FND and other invisible conditions that negatively influences treatments and care. Researchers, money, and volunteers are greatly needed to help illnesses like these that have greatly impacted and impaired my life and many others. This is why I now walk and talk openly, sharing my story and experiences in hope that I may shine a light for others to begin sharing their stories and experiences and together we can light a flame where that most needed research, information and funding will be found…..and most of all stigma can be silenced.

I hope that by telling my nightmare of falling through a dark hole of invisible hell, I may have helped you. This is one part of the hell that brought me to my message and mission of teaching and preaching to the world about learning more about invisible illness. I will not stop and I would love you all to help me. One way is to like and share this post, but you can also join me on my social media channels;

where we can all join as one by #lightingtheflame for invisible and mental illness.

Much love

TBG 💋

Shining A Light TO Show Just What Invisible Illness Is…….

Published on June 24, 2017 by abarefootgoddessonajourneyLeave a comment

The last few weeks I’ve felt myself disappearing down that shute, you know that tunnel, where all invisible illness sufferers go when health dips……BUT unlike past falls, I don’t stop……I just rest! I rest, so that I can continue my own healing and my advocacy for all invisible illness goddesses and warriors around the globe.

I’ve had to rest because on Monday June 26, I am launching an ongoing awareness campaign to shine the light on invisible Illness. I’ve been watching videos, documentaries, reading articles, writing articles and blogs all about showing, sharing and bringing the invisibility of chronic illness to reality for those that live with them but also for those that walk this world with ignorance and uneducated thoughts, actions and feelings about how I and many others live every single day.

My campaign is about shining a light on how difficult it is to live with debilitating chronic and invisible illnesses. This is why I walk and talk my daily journey- the good, the bad, the indifferent and just the plain weird! Everyday I want to share a different story, so that greater awareness can be brought to the world. From Monday I will share a series of blogs about a variety of different invisible illnesses, some that I live with……some that others live with and through these stories brought about by conversations, you will see these illnesses in a new and different light.
I want the light that I am igniting to bring about new conversations between you and your loved ones, friends, colleagues and even strangers. Because you see, when we begin to converse, we can begin to connect better and therefore we can better help each other get through the tough times that these illnesses bring.

On Monday, as I begin to shine a bigger light on invisible illness, I will be beginning with my own story and my newest diagnosis of (FND) Functional Neurological Disorder. Today, as a taster, I am giving you a brief introduction; This disorder occurs as a result of a problem with my central nervous system and my brain failing to send or receive messages correctly. The list of symptoms is very long as you will get to learn and many of them are extremely disabling. Also a lot of the symptoms that I will talk about, are also found in the diagnosis of MS & Parkinson’s Disease making it high level debilitating, life changing and hard to diagnose. Living with FND, sees me experience many symptoms all at the same time. What is difficult with this disorder, is that I have to live with frequency and severity of symptoms with a list of other chronic illnesses as well. So, you see describing what it is and how it affects me is a long process, but it is a process that the world needs to hear and see and that is why I am lighting the flame for invisible Illness.

I would love to connect with you, if you or someone you know, also lives with an invisible illness.

Please connect with me here or perhaps on one of my social media accounts and let’s light the flame for invisible illnesses;

TBG 💋

Tired, Weary, Broken & Fucked Up……..

Published on June 11, 2017 by abarefootgoddessonajourneyLeave a comment

So what happens when we fall……and we all do!

You know, those moments when we are tired, weary, broken & fucked up!!!!

These thoughts, feelings and actions occur when we live with invisible illness. These are the moments that make us need to keep fighting the pain of being chronically and invisibly ill. Illnesses such as anxiety, depression, autoimmune and neurological disorders fill us with scars that embed deeply into our mental, emotional and physical being.

Beginning the process of healing and recovery from these debilitating illnesses takes work BUT throughout the process and progress, low energy succumbs and we fall……! We tire and perhaps stumble from all the work that it takes to recover AND it affects us…..and if this happens, we fall and we break!!!!

When this happens, we feel that we have fucked everything up……all that progress-RUINED!

But these emotions that come and go when wandering a journey with invisible illness are real and we should not be ashamed of letting the world see them! We haven’t fucked up….it’s a stumble and yeah, if we fall, it’s just that a fall…..stand back up – be present and be YOU! Remember even mentally and physically strong people fall! This conversation that I am having tonight is such a strong anti-suicide message, for why fighting is so important to remember when we are overwhelmed with the chronic pain and suffering of these illnesses.

You are saying. . . but at these moments I’m too tired to keep fighting……Yeah, I get it, I’ve felt really tired too and YES I still tire after all my 15 years fighting……but I won’t give up, I don’t give up!

Invisible illnesses are diseases that can take a life time to recover from. They grind away at our inner most core, sucking the life out of us, just as we are rebuilding ourselves up from the ground. The fight becomes a moment to moment battle everyday and as we go, we have to listen to the self whispering, but more than that we have to stand up to our voices and the external voices who don’t recognise our illnesses as illnesses……it’s exhausting, and it’s why we get tired, weary and feel broken and fucked up!

These illnesses, these invisible fucking illnesses never take holidays so every day and every night you have to fight, fight and fight again. You might be finding the biggest reasons in the world to give up, but those reasons don’t need to be your reality. In fighting these illnesses, no one can see or know how hard you’re working to keep going every day. The fight is hard and in the walk to recovery you will feel broken.

BUT, WE NEED TO FIGHT……I know, you are saying, you don’t want too, sometimes I have said that too, but you don’t get to stop. I’m sorry, but the statistics say life is better than death and I insist you go on living……I am and I do!

But the good news is that when you choose to fight, you choose to take your next breath. Our invisible illnesses want to steal us of everything that we want to and need to experience today, tomorrow and the days after that. But we are not going to let these illnesses win. We are going to breathe in and out, one breath at a time, each and everyday knowing that this is our best fight and it’s enough, it will always be enough, because I am enough and you are enough!

Being tired is OK. Being weary is OK, feeling broken and yelling that we have fucked up is OK. But by taking the next breath…..after the yelling session, is all we need to do…..because that’s the process of the healing fight.
If you are resonating with my thoughts, feelings and conversations tonight please let me know, by liking and sharing this blog.

I write about my experiences with wandering a journey with all the invisible illnesses that are part of me because when we share our stories we connect and help each other.

I am a advocate and speaker who has made it my mission to change the way healing and recovery is seen for all that live with invisible illness.

If you would like to connect further, please do so on my social media platforms;

http://www.twitter.com/Just_1_Goddess

If you are struggling……that’s ok but remember to find the breath…..breathe in and breathe out so the fight continues.

Much love
TBG 💋

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Currently Sitting In Melbourne, Australia Raising The Volume For Me & You….

Published on May 3, 2017 by abarefootgoddessonajourneyLeave a comment

I am currently sitting in Melbourne, Australia pondering my path. That path has taken me on a long and winding journey! It’s been filled with pain, suffering and abuse – somehow squeezing the life out of me with multiple invisible illnesses that nearly destroyed me mentally, physically and emotionally! But, just as I thought the lights had gone out and the final curtains had fallen, I was given another chance at health and life!

That life, now sees me healing, recovering and building strength within me, so that I can also help others to heal and build strength in themselves too!

In healing myself and others, I am also awakening my dreams of educating the greater world about what it’s like to be ill with health conditions that nobody sees and very few understand. This education process that I am embarking on is going to be ground breaking awareness like the world has never seen and in successfully doing this, I am going to breakdown the stigma that hurts everyone of us that lives with or who has lived with and particularly for the special souls that lost their lives because they couldn’t go on!

My life in recovery, is filled with daily strolls along the sandy shores with my beautiful husband, doing yoga and meditation, speaking up to inspire and motivate the millions of women (and men) that live with these chronic health conditions! I fill my days teaching the importance of living mindfully and happily with inner health. My journey is about intuitive and holistic living using mindfulness, essential oils and clean nutrition and as I now wander around the globe my tribe grows and becomes bigger and stronger. The Barefoot Goddess foundation is going to be world renowned in the work it does for healing and educating the world about invisible and mental illness and in doing so I will be reducing and quite possibly eliminating suicide!

I no longer play small, because the world and its goddesses need the barefoot goddess!

This is my life and I do it for everyone of you that are living with the hardship of invisible and mental health! Walk with me by connecting with me on my social media channels;