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 💋

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

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 💋

A late night journal, sitting by the water meditating!

At the waters edge in this mornings meditation, has brought me such truth towards my vision, mission & purpose!

Let me tell you why and it’s all about going to bed with a profound journaling session ;

I HAVE A VISION, WITH A MISSION & PURPOSE TO LIVE…..
What is it, well it is simply to inspire and motivate the world that despite chronic health conditions, cancer and life’s roadblocks, have it all! I wander this life free to heal mentally, physically , emotionally and spiritually now that I can be me. 

Who is me – Well basically I am a ocean loving vegan, yogini, ballerina and abstract yarn artist who uses all of these modalities to transform my life and my life’s purpose to bring such a positive vibe and change to the people that I connect with globally.
I will never tell you out in the real world that I know everything, because I don’t know everything! But I do know, by continuing to wander the twisted bends of this world, the universe knows exactly the step that each of us needs to take.
I CAN STEP FORWARDS WITH MY VISION , MISSION & PURPOSE BECAUSE OF THE INTENSE VITALITY FOR LIVING & LOVING LIFE WITH ALL OF MY HEART!
I am the barefoot goddess, and together with you, I will walk, talk and shine in this big crazy world . 
AND so I slept mindfully and soundly and breathed my truth into this mornings breath session.

If you are struggling, take yourself to the waters edge, sit in silence and breathe through your truth and magic ,
Good Morning and blissful energy to you all today,
The Barefoot Goddess 💋
Please connect with me on social media at(

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

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

Chronic & Mental Illness Doesn’t Change Me From Whom I Was….So Please Don’t Stigmatise ME!!!

So as I lay here this warm summer evening in  Australia and I am thinking about the multiple chronic illnesses that I have. But there is one that stands out for all the wrong reasons! That health condition is Functional Neurological Disorder. It was a condition, that was not offered to me, but as many others it was given. The road wandered is hard! Some days it can feel like I am not really that sick, but then there are the najority of days that leave me wondering, why I have to be one of the small percentage of people around the globe that have to endure the most horrible pain and suffering that anyone has to deal with. 

Unfortunately, this is the hand I’ve been dealt , so let me get to , walking on and strong. It’s how I choose to use this hand throughout my life. This health condition which is Functional Neurological Disorder, will keep you down in such darkness or uplift you to such sunny skies. I can tell you that FND, can keep you tied down or it can you lift you up!  I have used so many different treatment plans and therapies. BUT , now I’ve found a path . It’s allowed me to walk past and through the ‘denial phase’ , where I just didn’t want to know. I am now in the ‘acceptance phase’ where I understand the difficulties that I face and that I will face.  

BUT , now all I want is to be the light, so that I can shine for others, through their phases  – initial and long term !  As we get ready to welcome the new year in, I will be launching two books, one about my own illness and life journeys and one filled with stories from my brothers & sistas  and their journeys. I have also created a storyline for my awareness documentary , a Ebook stepping the baby steps using yummy healthy vegan food..

If this resonates with you again , please connect and join my little tribe, because when we walk together, we simply the sun and our lives.

So if you broken, please know you are not alone and you definitely don’t need to stay broken, I am here and we are here together and we will become strong again.

Much love 

Lisa-Raie

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

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

Suicide – Let’s Talk About It….(please)

Who the fuck am I? DO YOU EVER ASK YOURSELF THAT or am I just the crazy bitch that the doubters, naysayers and haters say I am!!!

Am I the goddess of truth, light & healing or am I the goddess of dark, illness & death……

I truly am wondering this at the moment. 
You see, I have a FUCKING big message to bring to the attention of the world and that seems to be the problem! 
My message is “SUICIDE” but as soon as even the word is mentioned, people turn on me and then they immediately switch off! It is still the one huge subject within the mental illness bubble of life. Suicide numbers are rising, globally. 
We have to talk about suicide, because to talk about it is about living and that to me, is what life is about! 

“SUICIDE IS THE ELEPHANT IN THE ROOM”
So to you that are still reading, suicide was brought into focus for me whilst I was living in Geelong. We were involved in two seperate sports clubs, cricket & football. We got really involved socially with all the fantastic people and within both instances hearing the news that 2 young men still with so much to live for , had taken their own lives was horrible to understand in every degree. The shock was devastating for their many friends, so to even understand what the families were going through- well you couldn’t. The only thought was that if only we knew the battle they were fighting. In the months afterwards I think there were many of us that knew these young men, going through a whole range of emotions, trying to make sense of the super situations;

  • Guilt was definitely one – could I have changed the outcome had I been around?
  • Anger- that they had selfishly taken the easy way out but, mostly, just an indelible sadness that we could never talk to them again.

But life goes on, however something is altered forever. I remember our family dealt with it particularly with regard to one of the boys because we were so close to him and like I’m sure many do, we didn’t talk about it properly and it was most definitely the elephant in the room.
SOME PEOPLE THINK SUICIDE IS SELFISH-THIS IS FAR FROM THE CASE!
In the years that followed my own health deteriorated and one after another, I was diagnosed with a multiple number of chronic illnesses. You, can never understand what the journey looks like, initially because you are so ill but the doctors can’t find what’s wrong with you- then they do and it’s a relief but then the journey keeps continuing to bring more pain. That physical pain really seriously puts pressure on your ability to cope and then suddenly without even knowing you are battling physical and mental health conditions. Throughout my own wandering with chronic health I’ve tried to stay strong by finding other mindfulness, treatments, people – anything that would allow me to keep the breath of life alive. In 2015 after a period of really good health, my health deteriorated seriously quickly. From about April of that year to September I was struggling to build the growing wellness centre that was my life force. My business ended and so did the energy to live, I was googling suicide and ways to die but I never did! 2016, arrived and a number of family circumstances caused me to spiral out of control, ended in hospital with pneumonia in March and then not long after I was back into hospital with chronic pain and illness. It was that admission and after a visit from one of my specialists that I knew I couldn’t keep going. I had to escape, I ventured out of the ward to take myself to the road so that I could kill myself. Obviously- I didn’t get their, but with the help of a most wonderful doctor I realised that my physical health complexities had caused my mental health to be critical and it was not normal to have suicidal thoughts. I spent three weeks in hospital organising medications and therapies to help my physical and mental health conditions. 
Suicide can be difficult to understand for anyone who hasn’t been suicidal. I thought about my mindset at the time of the young men of Geelong and their suicide, and I probably did consider it a selfish act. That is far from the case now. Some people also think suicide is a choice, again this is wrong. I actually think suicide is often due what people perceive as a lack of choice. I now know that the person who takes their own life OR EVEN TRIES IT, believes it is the only way to stop the pain.
I’ve promised myself, if I ever get to that place again, I will open up AND I guess it’s why I WANT THE DISCUSSION TO OPEN UP within the world more every day.
I want to try and explain what takes a person to the point where they cannot conceive of living any more. Despite having seen at first hand the devastation that suicide of a loved one, brings I was at the point where I genuinely believed that everyone who knew me would be better off if I wasn’t here anymore. When you are in such a dark place, all insight and rational thoughts are lost. It’s not necessarily that you want to die, you just don’t want to carry on living. There is just an never ending darkness in your mind, which you think will never end. You become very good at hiding it, putting on a mask.
Do what happens when you start to get treatment and clarity begins to return. Well seriously talking about my experience, I couldn’t quite believe I nearly came so close to putting my most loved ones through such a horrendous ordeal. Hopefully I won’t in the future. 
I’m in the best place I can be at the moment, even though I do stop at times like these moments because of my chronic physical illnesses. I am busy equipping myself with the tools to keep on top of my mental health, so that the physical health doesn’t tip me over. But I also know that if I ever do get to that place again, I need to open up to those around me before it’s too late and another reason why it’s my mission and message to get my loved ones and the wider community and world learning to talk about the subject.

There should be NO STIGMA in talking about SUICIDE.
I know that people are afraid of suicide because they don’t understand it, which is why it’s my role to help the world demystify it, and make it so that people are not uncomfortable expressing suicidal thoughts. 
SUICIDAL thoughts doesn’t make you selfish or weak, it’s just a symptom of an illness, and like other symptoms of other illnesses there should be no stigma or shame in talking about it, indeed, it should be encouraged.

My name is Lisa-Raie, I am the barefoot goddess of light and dark who wants to talk suicide with you. 

If you or anyone you know is feeling suicidal please find some phone numbers available for you within Australia, USA and the U.K;

Australia 

BeyondBlue

 Ph. 1300 22 4636

Lifeline 

Ph. 13 11 14

USA

1-800-SUICIDE
(1-800-784-2433)

or

1-800-273-TALK

(1-800-273-8255)

UK

Calm: 0800 585858, 

HopeLine UK – 0800 068 4141 
I want this message, my message spoken about and I would be so grateful if you, yes you would be kind enough to share it with your community. By sharing we begin to talk about it and that’s what is so important.

Please connect with me on my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess


“Wandering Towards Wellness Globally”

The Lonely Walk With Chronic Illness ❤️

When you live with chronic illness you may experience an immense heartache because of  the loved ones who walk away. This is so for me, and I know so for many other people struggling to live with chronic pain and illness. It’s unfortunately inevitable that when you are chronically ill, they will affect relationships you have with friends and family, etc – it doesn’t really matter who it is because our chronic illnesses don’t care.

This is the sad reality, of chronic illness and it shows the true colors of the people that surround you at sometimes the most vulnerable. You become aware of just who actually cares enough to stick by your side when you and your health follow the long and winding roads of chronic illness. I can tell you, from personal experience It disappoints, shocks, sadden and even crushes me how some people will be during your most low times. Not all loved ones show support in the same ways, and again in my experience some do a five star job, but their are others that will wipe you completely. It’s just not very nice to see those loved ones walking away because we do not choose our illnesses and we definitely can’t change them. Appearances  and even attitudes can be changed but we can’t change our illnesses and when a loved one may walk away many of us that live with chronic illness struggle with deep and dark anxiety and depression that accompanies  our already harsh illnesses.
I often try to decipher what has wiped away some of my loved ones and  I know it is very hard for them to even fathom my life, my pain, my struggles. This journey has taught me that different people handle chronic illness very differently. Some are caring and supportive, some wipe you from their life, many talk behind your back, others are just left confused and then their are some that just tire of hearing about the journey. I know I get tired of wandering this journey that changes directions so many times and I am certain this is why people like me, try to tough out life with chronic illness, acting as normal as possible, saying we are ok, when really we feel simply horrible. 

Walking a life within and through chronic illness judged or doubted by loved ones is devastating. My pain is real. My illnesses are real and the reason why I wander globally telling my story is for awareness and to be a voice not only for myself but also for the many others also struggling to make sense if their journeys. 

Life is hard enough and I hope one day, cures can be found for our illnesses that consume us and when this happens, I can only hope too that  those loved ones who  judged and or walked away from us may see that we were the goddesses and warriors fighting such horrible battles and perhaps reunions may occur.

I hope if you have resonated or connected with similar journeys that time eases pain but know you are not alone. If you need somebody to see this please share.

 It’s these journeys that we need to remember clearly that it’s so important to walk together, not tear each other down.
💋