Tag: raising awareness

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Walking & Talking for ME and YOU,

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;

http://www.twitter.com/just_1_goddess

http://www.facebook.com/TheBarefootGoddessAU

Much love to you all
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;

http://www.twitter.com/just_1_goddess

http://www.facebook.com/TheBarefootGoddessAU

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

Much love

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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As the rambles continue…..

Published on February 5, 2017 by abarefootgoddessonajourneyLeave a comment

You know those days & even when you live a clean and free life , you will have them……don’t squash them in – let them out…… rant them, cry them, scream them……

Shadows that scream when I’m alone EVEN when I’m not alone….ahhhh yes it’s just that I’ve got a migraine! It’s the internal war that rages behind my face and above my throat!My pain will be up, down, and sideways!

BUT let it be said what the headache represents is me defending in suspense!

It’s me suspended in a defenseless test!

Being tested by a ruthless universe examiner !

One moment of weakness , doesn’t mean you’ve failed, it doesn’t mean you’ve been defeated- it’s you stopping to rest, stopping to restore! Let that headache, that migraine heal and tomorrow you will be strong again! You will stand and you will conquer!

#iamthebarefootgoddess , if you resonate please like and share my blogs as by sharing our stories we raise awareness and inspire each other . Also remember to join me on my social media channels;

#migraines #ajourneyintime #testingme #teachingme #breatheingoddess #kundalinirising #kundalinihealing #iwalkandiwander #Findingpeace #findingme #beingme #joinmeonthisjourney
“Wandering Towards Wellness,Globally”

Happy New Year – Welcome To Life, Awakened & Aligned….🙏🏻

Published on December 31, 2016 by abarefootgoddessonajourney2 Comments

Today, 1,1,2017 begins a whole new step into my truest and highest selves life path!2016, was turbulent, but through the bumps and bruises, it brought openings in myself that I had attempting for years! But the door opened and I stepped in, taking WHAT was mine. Through doing so, I’ve been able to release , off load and let go of stuff that had been stuffed and packed into the deepest most insular cells within me. But they are gone and I am now free, in pure nakedness to express myself as I need to. Another reason for my name change, I’m not the little girl “Lisa-Raie” that was born to this world and forced into being what I am NOT! I am the bliss through the storms , I am a creative because of the energy sent from Mother Earth’s universal platform.

By awakening and aligning fully, I have gained the true shakti energy that my yoga and meditation training had taught me back in days gone by!

When you receive the shakti energy , you come alive, you are luminous and you are desirable!

Having the shakti within allows the essence of vibrant health, feeling good in your own skin and feeling that your life has meaning and value. This is why, I know from today I have the ability to transform the understanding of what invisible health complexities are and I can set real change to making better and more improved treatments available for all that require them. When you have the energy of shakti you have the energy to engage with life in more meaningful ways. The shakti energy empowers you to seek growth and change and to find purpose and fulfilment in everyday life. Shakti is the foundation for a conscious life. When Shakti is directed inwards it empowers you to raise your consciousness, to experience yourself as part of something greater. Ultimately, Shakti is the fuel that powers your spiritual growth and the awakening of consciousness not just in me but in others too.

Since awakening and aligning to my highest self I know what it is like to feel alive and well within my body, mind and spirit and it is why I know my true healing has begun.

I am the barefoot goddess – Harmoni Shakti 💋

http://www.instagram.com/fnd_goddess
“Wandering Towards Wellness, Globally “

That’s The Thing About Pain….It Demands To Be Felt 🙏🏻

Published on November 28, 2016 by abarefootgoddessonajourney5 Comments

People who suffer from severe, chronic pain and illness know how it can change life. It is so very cruel making it hard to enjoy even the most simple daily tasks. Chronic pain as illness is still not that well understood. The medical industry used to believe that pain was a underlying injury or disease. With these thought patterns doctors focused on treating the underlying cause of the pain, with the belief that once the injury or disease was cured the chronic pain or illness would also disappear. If doctors found no underlying cause for the illness or pain, then the patient was told that very few treatments would be available, or worse, “the pain must be in your head.” It’s sad to say, but some doctors still practice these thoughts , having no appreciation for the unique problem of newer theories about chronic pain and illness.

Luckily there is a new community starting to understand that if pain or illness is no longer a function of a healthy nervous system then the chronic illness/pain itself becomes the problem and needs to be treated as the primary point of call.

We the chronic pain and illness patients need to stand as one, to raise awareness so that more conversations are started and more research for information and treatments are given.
Do you walk through life with chronic pain or illness- if so please connect with me! If we all walk together, our global governments and health care departments will need to listen and make appropriate choices and changes.

Connect with me today on one of my social media channels;

http://www.instagram.com/fnd_goddess
Let’s walk together for our health

Lisa-Raie 💋
“Wandering Towards Wellness, Globally”

The Tingles In My Toes & That Burning In My Feet….

Published on November 4, 2016 by abarefootgoddessonajourney2 Comments

Oh wowzers- it was one of those nights! Yes the type of night, when tingles in my toes, feeling like the nerves in my feet were burning and then of course the leg twitches begin giving an extra amount of shooting pain. You see, this happens when my nervous system goes into major short circuit warfare. It’s occurance because I am one of many across the globe living with neuropathy. Neuropathy is nerve damage or some kind of internal disruption. That’s the simple definition BUT what’s not simple about neuropathy is the cure – THERE ISN’T ONE !

If you are a person who isn’t affected by this hideous condition then you will have absolutely no idea about what life is like, living an average day or night. So let me try and explain. Most people have little or any knowledge of how their nerves work and how vital they are to daily life anyway and so when the nervous system breakdowns they find it impossible to understand. I as a neuropathy sufferer have faced the difficult task of explaining my weird symptoms to doctors, friends and family for a long time. The description of my pain as spoken about at the beginning of this blog, has left me feeling frustrated and not taken seriously on many occasions. But what is happening is damage to the nerves itself and particularly the lining that protects the nerve. What is occurring to neuropathy sufferers like me, are a number of confusing, functional breakdowns which send out wrong signals, or no signals at all. It really can be compared to a short circuit in a domestic electrical system but the resulting feelings and sensations are pretty unique to the condition and every sufferer. It’s important to remember that neuropathy affects all sorts of people from all areas of society across the globe. Just as their are many people like me that suffer with neuropathy, there are also over 100 causes and over 100 types of neuropathy, so pinning down exactly how someone feels with their condition really depends on where the nerve damage is happening and what part of your body is being affected.

So, where will neuropathy strike and how do you recognise it? That is the biggest problem for all neuropathy sufferers! Generally speaking though, it’s in the feet first. The best way to explain this to you, is as I had it explained to me. Feet are at the end of the nerve pathways and the furthest away from the central nervous system. So perhaps logical that problems happen there first. The nerves there are part of the peripheral nerve system. This is peripheral neuropathy and what my diagnosis is. The nervous system consists of the spinal cord leading to the brain which makes up the central nervous system – all the nerves radiating out from there are peripheral nerves. Back to the feet, where the signals of neuropathy usually begin! Let me tell you, that this pain is never an overnight happening, it can take years to develop before you even notice anything which is why it is so difficult to diagnose and treat. My neuropathy has lead to my walking gait being strangely affected usually by losing my footing or miss stepping. I feel as though I am doing the right thing in order to make my feet move in the right direction but they do something completely out of order else which usually leads to falling. This collection of actions are because the wrong signals are being sent out, through a communication breakdown between my brain and my feet. Not only do the feet feel odd and painful but my legs can feel like they are becoming weaker. Climbing stairs and the simple action of walking can feel like an fitness boot camp , as I constantly now trip over or stumble when I least expect it. I now use a 4 wheeler walker as assistance with balance and security when I walk. Because of the nerve damage in my feet now when I walk , I will clench my feet in order to get a better grip on the ground beneath me. Obviously this leads to loss of relaxation and then muscular cramping of the feet occurs. So yes, balance becomes a major issue when chronically affected by neuropathy and i often feel like I’m walking around like I am drunk. Feelings and sensations like what I experience in my feet, also affects my hands and arms. When these instances occur, i can lose control of my grip usually causing me to drop things. This is where, you cannot even imagine the effect this has on me or others effected. What happens is a total loss of trust and confidence in our own actions leaving you frightened and confused as to what is happening and that isn’t taking into account neuropathy pain!

The pain neuropathy brings – OMG, where do I start! The most difficult thing for friends and family to understand is the pain neuropathy can bring. It’s like nothing else you’ve ever experienced. My introduction was just the tip of the iceberg. It can range from mild tingling or burning, to pain that can leave you crying in agony, especially at night (the reason I was up, writing this). It can feel as though the affected areas are on fire and burning sensations are perhaps the commonest after tingling. Tingling sounds innocent enough but it can be so severe that it’s extremely painful and then you long for the numbness that I initially began with. I often feel like what feels like electric shock symptoms. It’s little wonder that opiates are my only course of action but even they have their limitations, leading to increased doses and other debilitating symptoms occurring and of course addiction to those medications. So with all of those weird feelings and sensations, I need to be especially careful with hot water as to me it can feel cold or vice versa leading to cases of burning myself. The same goes for my urinary problems and digestive malfunction. It’s very difficult to relate these to nerve damage but they are also common symptoms of neuropathy. The nerves to blood vessels, intestines and bladder are damaged by this condition and give out faulty signals leading to abnormal behaviour in functions which most take for granted. What happens is that i feel bloated after eating only very small portions or I will have difficulty emptying my full bladder yet the brain tells me that my bladder is empty. This has left me permanently disabled and now needing to self catheterise daily. This sort of thing leads to infections and instances of diarrhoea and constipation.

So do you see why trying to explain this, unless you have experienced it, is so very difficult! If you don’t live with neuropathy, you just don’t understand what it’s like. But hopefully I have given you a better insight of what it’s really like to have neuropathy in your life. It’s a horrible condition because it’s unpredictability. Some people go for years with only mild discomforts with only a little tingling here and a little numbness there – while others like myself suffer dreadfully and need to be at times on the heaviest of opiate medications to control the symptoms. All i ask is that if you know anyone that has neuropathy, PLEASE offer sympathy and understanding because their lives are difficult. Chronic pain is a feature of this condition but the chronic pain of neuropathy is possibly one of the meanest of them all and not to be underestimated.

If you have resonated with this, please let me know or perhaps connect with me on one of my social media channels;