Tag: advocate

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 💋

Our lives are perfect, just the way they are….📸🎞📸

Published on July 15, 2017 by abarefootgoddessonajourneyLeave a comment

So over this last week, I have had to stop. I’ve had to stop because the dreaded winter cold and flu caught and tagged me. With this downtime I started to think about how many of us are addicted with the best and beautiful people in social media……you know the one’s, fit tanned bodies, beautiful children, perfectly clean and styled homes.
WHY………

Well in my opinion when we scroll, we compare ourselves to the beautiful and seemingly perfect social media photos and posts…..you know, all the tanned fit bodies, perfect children, perfectly cleaned and styled homes. Nothing is amiss…….as we scroll we hate them a little, but we also love to stalk on their perfect lives……wishing and dreaming that our lives were also that perfect, so we could be that happy too!
BUT DID YOU KNOW, THAT YOU’RE WRONG……about your life!
Our lives are already perfect……
Everything that we have right now has been created by US and WE have the power to love what we have OR to make the changes to get what we want.

What we see on social media, is that “grass is greener, on the other side” ideology. That perfect social media life that we think is out there is not going to make us happy. Because that life is someone else’s life. Yes, sure let’s follow, like and be inspired by what we see….but how about we stop wasting time wishing we had what these other people have and really, truly create our own amazing journey of life…..because that’s exactly what we all have.

If you follow me on social media…..you will find raw, real and authentic me. I want to show the world what it’s really like…..no glitz…..no glammer but yet how I can live a damn amazing life.

Can’t see through the maze of what’s on social media and reality……let me help you break down some of the walls so you too can see that your life can be just as amazing, or perhaps better than those social media faves, that you currently stalk. Email me at harmonishakti@gmail.com and “let’s make life shine with amazement”.

Let’s also connect on social media if we haven’t already here;

Www.instagram.com/the__barefoot__goddess

Much love

Harmoni 💋

Just How Do I Define Invisible Illness…….I Do It By #lightingtheflame 🔥

Published on July 6, 2017 by abarefootgoddessonajourneyLeave a comment

So how do I define invisible illness; I could say it’s an illness or disability that is hidden or not apparent, but that doesn’t even begin to define what some of these illnesses really are, or how they impact the many millions that live with them everyday. You see, some people with sight or hearing disabilities may not wear glasses or hearing aids, BUT they are invisibly disabled. Someone that may have to sit day in, day out because they have chronic back or joint problems sitting, can be categorised as having a invisible impairment. Invisible disability/ illness creates so many challenges for the people that live with them. There are so many more examples that I could give to define a invisible disability. The reality of invisible illness or disability, is that they can be so difficult for others to recognise or acknowledge. This makes it difficult to understand the cause of the problem or problems, because they can’t see evidence of it in a visible way. So these invisible conditions have been captured under an umbrella term that captures the whole spectrum of hidden disabilities, known as ‘invisible illnesses’. Having so many illnesses and conditions under the one umbrella, means it is so hard to decipher and diagnose what is actually happening to a person that presents with unseen symptoms.

People with invisible illnesses can find it difficult to make others understand how their symptoms of such things as extreme fatigue, dizziness, pain, can be so debilitating. This misunderstanding, will in many cases be met with hostility, judgement and stigma by the bigger community and world.

People living with invisible illnesses and chronic pain are often accused of faking or imagining their disabilities. These symptoms are real, they can occur due to bouts of chronic illness, chronic pain, injury, birth disorders, they can even just come out of the blue and most importantly are not always obvious to the onlooker.

Many millions of people around the world, have a medical condition which could be considered a type of invisible illness or disability. Let me explain it this way, there are many that have a chronic medical condition of one kind or another, some of these people are not considered to be disabled, as their medical conditions do not impair their normal everyday activities. These people do not use an assistive device and most look and act healthy. So I’ve explained one side of illness invisibility, this is the other side, the side that causes and increases what can be debilitating physical or mental impairment that can lessen one or more major life activity.

It saddens me that when somebody sees a person in a wheelchair, wearing a hearing aid, or carrying a white cane, it tells us a person is impaired in some way. But for people living with invisible illness and/or disability living is a bit more difficult for many people in the world to acknowledge.

Invisible illness and disability can and do significantly impair normal activities of daily living.
Examples of Invisible illness Disability vary, here are just a few;

Chronic Pain can be the cause from a variety of conditions. A few reasons for chronic pain may be because of back problems, bone disease, physical injuries, and many more reasons. Chronic pain may not be clear to people who do not understand the specific medical condition.
Chronic Fatigue is a type of disability that refers to an individual who constantly feels tired. This can be extremely debilitating and affect every aspect of a persons every day life. It is totally invisible to the greater community.
Mental Illness is a term for many illnesses of the mind. Examples are depression, attention deficit disorder, schizophrenia, agoraphobia, bipolar and the list goes on. These illnesses can also be completely debilitating to the person suffering and can make performing everyday tasks extremely difficult, if not impossible.
Chronic Dizziness is often associated with problems of the inner ear, chronic dizziness can lead to impairment when walking, driving, working, sleeping, and other common tasks.

I hope you are beginning to see that being invisibly ill, effects many areas of health which effects many areas of life. Many people living with a hidden physical or mental challenge are still able to be active in their hobbies, work and even be active in sports, but their are others that struggle just to get through their day and cannot work at all.

I want us all to be able to come together in understanding the true level of invisible illness and disability. Because, when we do we will truly begin to see awareness and support bringing better research and thus treatments.

I will finish today with a list of invisible illnesses that I’ve been creating to show the world just how wide the umbrella is…….but even I may have forgotten some. If I have, please let me know and I will add your illness/disability to the list;

INVISIBLE ILLNESSES

ADHD

Anxiety disorders

Allergies

Arachnoiditis

Asperger Syndrome

Asthma

Autism

Bipolar disorder

Brain injuries

Chronic fatigue syndrome

Chronic pain

Chromosome Duplication

Chromosome Triplication

Coeliac Disease

Conversion Disorder

Crohn’s disease

Depression

Diabetes

Ehlers Danlos Syndrome

Endometreosis

Epilepsy

Fibromyalgia

Food allergies

Fructose malabsorption

Functional Neurological Disorder

Hypoglycemia

Inflammatory bowel disease

Interstitial cystitis

Irritable Bowel Syndrome

Lactose Intolerance

Lupus

Lyme Disease

Major depression

Metabolic syndrome

Migraines

Multiple Sclerosis

Multiple Chemical Sensitivity

Myasthenia Gravis

Narcolepsy

Personality disorders

Primary immunodeficiency

Psychiatric disabilities

Reflex Sympathetic Dystrophy

Repetitive stress injuries

Rheumatoid arthritis

Sarcoidosis

Schnitzler’s Syndrome

Schizophrenia

Scleroderma

Seizures

Sjogren’s syndrome

Transverse Myelitis

Ulcerative Colitis

Invisible illness and/or disability creates challenges for the people who have them. I’ve said it before and I will say it again and again, the reality of these conditions can be difficult for others to recognise or acknowledge. You may not even understand the cause of the problems, because you cannot see evidence of it in a visible way. So, I say to you – YES, YOU out there in the big wide world, if you can’t see something, how can you judge it! Let’s begin walking together supporting those that are impacted by the many forms of invisible illness. Let’s raise awareness and bring about more real life research so better information and treatments can be formulated to change the way we all see and relate to invisible illness and disability.

If you’ve liked this post, please let me know and if we haven’t connected on social media, let’s do so here;

Much love to you all
TBG 💋

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 💋

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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Healing – WHAT THE FUCK IS THAT!!??

Published on May 29, 2017 by abarefootgoddessonajourneyLeave a comment

Healing, WHAT THE FUCK IS THAT!!??

I got your attention, didn’t I!

But, truly this is a question that I’ve asked myself many times and it’s the question that many people ask me because, when you live with chronic pain, illness and disease, healing is an unanswered question!

Simply, though healing is the process of becoming sound or healthy again after a period of illness and/or darkness. Healing is a gift and everyone has the right, to receive it. Once you begin to receive this gift that healing is, you learn that it is a complete and beautiful process. When in the full process, healing allows a flow of energy, that deals with ‘illness and disease’ at its most deepest level and frees you to work in and with yourself most effectively, so that gets you true and profound results.

So stepping into profound healing helps us with the range of conditions, that we are endeavouring to step out of. It is also a process of relaxation, which helps our bodies to heal authentically and very vulnerably at its own pace and in its own way. When we find true and profound healing, we find the cause of all our pain and suffering and that let’s us release so much, pent up emotional, physical and mental damage.

Healing is about restoring balance in health and life and therefore is about expressing feelings, allowing us the process of being able to fully connect with the ground that we stand in, letting us regain the control that we need at any particular time of life whether we are in crisis or not.

So working out how we commit to healing is the question. If we are experiencing true healing for the first time we may need more time to learn how to relax into the process and enjoy the full benefit. As we step into that healing, we dabble into a variety of philosophies and resources and it is about trusting that process and learning as we go.

So, whatever, the process is that we take with healing, it is so important to keep contact with existing doctors especially if we have conditions that require mainstream medical treatment. Healing complements all conditions (mainstream & alternative) and it is about allowing positive benefits into life’s challenges and experiences.

This thing called healing is gentle and will never do harm when you allow it to do what it needs too, so step in, take a deep breath and let the process take you on its journey. So my question to you now, is ‘have you connected into a healing process that helps you’? For those that have not found a healing process that works you may be interested in a upcoming challenge that I am launching that helps you begin the healing process. This will be found on my Facebook business page at http://www.facebook.com/TheBarefootGoddessAU but I will also be sharing more and more healing tips across on my other social media channels;