Seven Daily Habits

7 daily habits, that will change your life;
1 – wake up 
2 – complain less
3 – teach others
4 – roll with change
5 – be on time
6 – practice kindness
7 – stay positive

Life according to me, in thought and action……

Living life according to me in thoughts and actions looks and feels something like this;

  • I try to keep everything simple, but when I want to achieve something, I do it with all my heart! That sometimes, goes awry.
  • I am a over-thinker. Letting the truth, be told I have 100s of imaginary scenario playing in my head  at any one time….sometimes this makes situations more difficult than it should be but well this is how I am and it’s how I make the magic happen.
  • Health and life issues will always challenge me, as I aren’t someone who keep things to themselves anymore. I used to hold it all inside until I became toxic to anyone or anything, now I will confront the challenges head on, till I am facing back in the right direction. I am real and raw and that’s not always easy, but it’s the difficult times that push me back through to better days. Although I know life can’t be perfect, it’s the want of perfection that makes think a lot which at times causes the challenges that mess up particular situations.
  • I am one of the best listeners. I can listen to others stories all day, everyday and I  will listen to every story with keen interest even if it’s about something I don’t understand. I know the importance of listening and I want others to reciprocate that.

So this is me and this is how I wander the shores of the globe preaching and teaching about my experiences and beliefs. It may not be normal, but what is normal anyway!

Much love

Harmoni πŸ’‹

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

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

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;

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

Walking & Talking for ME and YOU,

Harmoni πŸ’‹

Just How Do I Define Invisible Illness…….I Do It By #lightingtheflame πŸ”₯

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;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

Much love to you all
TBG πŸ’‹

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

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;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

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 πŸ’‹

FEAR – WTF are you?

Fear – WTF are you ?
This time of the year, brings in an abundance of emotions for me as I enter so many medical specialists rooms for review. 

Yesterday was particularly emotionally draining, taking me into a spectrum of myself that I don’t really like but alas one that remains whilst health remains unbalanced. That is fear!
Nonetheless, yesterday came and with my courage I walked into the familiar hospital room and awaited for the appointment with my neurosurgeon . This was an appointment, learning if my inoperable brain tumour was the same as last review, or had it grown! Staying the same size in growth would be the best outcome as it would mean that life remains, wandering as I have been for the last six months, growing internally and healing externally. Unfortunately that best outcome, was not the case – the motherfucking growth inside my head, had not only grown slightly,it was now the size of a small nectarine.
My courage suddenly shrunk, I was immediately moving into a state of fear – in a state of discomfort, exposing myself to a place where I don’t like being. That place is so very vulnerable. But, somehow. I stayed strong and I was able to converse with the neurosurgeon about the best case scenario. Which was to begin a type of radiation therapy that in most cases, kills the live cells within the tumour, stopping any further growth.
This strength I found, in such circumstances,  was me being fearless in the very centre of fear! I had not been able to do fearless, before this! I was at the roundabout, again looking at my old self but seeing who i want to be, no wait actually who i am. This thing, we call fear, it strikes in circumstances that can’t be seen – It then comes and it pulls stronger than gravity itself! The rest of the day became an incredible internal battle where I actually found myself, desperately searching for safety, holding on to every kind of mindful sanity i have come to know. I could easily have cried and God only knows I’ve done a lot of that, I could have screamed , why the fuck does it happen to me BUT in the end it’s about not only staying alive BUT it’s about living the life most important to my truest self.
Yesterday’s moments have truly taught me, what my truest self has been learning over a well walked journey. That learning curve is that, I continually want to grow and embrace new, versions of myself again and again. I definitely know that my true self wants and needs to be in the now, allowing the forward steps to flow like my inner most breath. 
The truest sense of me has broken all of the bull shit boundaries that have been blocking what I want most for life in the whole. With the steps made, I am now able to really show up, filled with a courage but yet with a raw honesty that doesn’t hide from anything or anyone. 

These moments, are the moments that stand still! These moments are those times, when you stand up and say “Fuck this is real and so am I”. When I sit still, like I am now, I can see the parts of me that create fear and courage all in one. That inner vision, allows me to know that everything will always be ok, because when I acknowledge the uneasy moments, life goes on turning discomfort into bliss. This journey becomes an ongoing process that will come and go when I step in and out of life’s movements.
For so long, I’ve been telling myself to find myself and my truest purpose. Yesterday, proved I’ve done it – well it’s in progress. I’m not only finding the path to my truest self but I am also wandering towards the destination of my purposeful message. 
This path of mine, wandered with chronic health conditions, some known and others leading me with a blackened mask have been one of the hardest I’ve had to endure. But since,acknowledging all of my fucked up shit, I’ve been able to step into fear as a companion. 

From, this moment, I want to take on life as an opportunity to be brave, to be courageous. I want to come alive and show myself and the world who I really am. I am not my complex health conditions, I am me, a woman of substance and so many variances.  I can do this…..I am doing this. 

Fear, WTF…….you’ve brought me home! Home to ME.
These are lessons learnt over a long walk but which make me so proud and if you are walking a similar path I hope I may have helped you see something in yourself. 

Please like and share if you do! Also make sure you connect with me on my social media channels;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/FND_Goddess

http://www.instagram/the_barefoot_goddess
“Wandering Towards Wellness, Globally”

Putting myself out there….πŸ’‹

Guess what, 

I am now brave enough to put myself out there,and I know not everyone is going to believe in me and not everyone will support me. But, I know that if I stay strong and confident enough to look beyond all of my challenges that I face within health and life and keep pushing ahead with the fierce determination to stand up and make a difference, to actually do something epic in this world then that is when I will make the magic happen. I am not going to stop when i feel like no one notices or cares because I know care very much about my message , passion and purpose. I know there are people out there watching me , that need me to keep going for myself and for them. 

If you resonate with this, let me know and let’s all continue to be brave, fearless and strong for what and who we believe in. 

πŸ’‹