My Third Eye Awakening……

I’ve been striving  to enlighten the darkness that I’ve lived in for way to many years by diving deep and even deeper into the unknown of me. I’ve had some knowledge about the intuitive interface that is within me but nothing truly is preparing me for what is embracing my present stance. All I know is that my inner most torch of curiosity leads me forward.

You see, coming forward has meant awakening me as I was created all those years ago. Healing, learning, loving and finding more about my true purpose has opened my third eye.  Finding the key to unlocking my third eye and my true purpose has been life changing, as it has really allowed me to show the world who I really am and what I am here for.

That unlocking was just a few days ago……and wow I’ve been asking myself since what exactly has happened……because a lot of weird shit has been happening!

Going deeper to find some answers, I’ve learnt that our third eye is a gateway to spirituality and  by opening it, we open ourselves up to the spiritual realm.
Since opening my third eye up, I have begun to see things, I have started experiencing and feeling things around me. These experiences and feelings are entities that have always been around me, but now that I have awakened my  third eye I have a spiritual connection that allows me to see them.
This next step of my journey has opened up some fears that I am not actually sure about. You see, I feel I’ve awakened my consciousness that allows me to pass through the barriers of the physical realm of the present moment and it’s letting me go beyond.  What have I opened up in myself I am not sure, but my strong intuitiveness tells me that I must keep delving deeper. Something deeply imbedded in me is downloading as I write this, telling me that I have a chance to find a lost part of my personality that has long waited my attention. These last few hours have been excruciating with severe pain and discomfort not knowing what it could be? I don’t want to let go because if I do, I may lose some important part of me that needs to be seen and heard.

So with this new level of fear and somewhat excitement I look forward to finding more aspects of me that have been deeply buried. I know already that there is going to be positive outcomes that bring so much happiness but I also expect there is going to be things that scare the hell out of me but I know what comes forward is what needs to come forward for me to wander further on this journey of life for me and so many others across this globe.

So, if you are like me and you are working on healing and learning more about you…..let the clearing take place. Open up and let’s experience the magical moments that make the journey roll through. I would really like you to share your experiences with me about when you opened your third eye.

Much love 
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 💋

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 💋

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 💋

Journaling Thoughts, Brings Affirmations That Transform…..

Journaling today, has set my agenda for the new week ahead! That agenda is all about health being without a doubt, wealth. To create the type of wealth I want for my mental and physical health, I need to set daily intentions with affirmations, that keeps my ignition on full power.  Living with invisible illness, that ideology can be hard but with practice, when you set the mind to think healthy thoughts, you can stay on board the track to filling up on a wealth of health.

The connection between our mind and body is becoming more prominent, with regard to healing the illnesses that we cannot see.  You see, a lot of invisible illnesses are heightened by negative thought and emotions because our immune systems have been lowered and compromised for an abundant number of reasons. When we can allow our minds to become still and calm, we give ourselves a chance to heal right down to the cellular core.
Living with chronic and invisible health conditions, many of us allow our emotions to be controlled by our thought patterns and these  very thought patterns are often formed at will, when needed to comfort us when we are in fear or doubt about health and life. Setting intentions using affirmations daily, help us to create new and more positive thought patterns and thus help us to develop new strategies for healing our health.
The quote, “Change your thoughts, change your life” is so profound when building stronger and resilient health foundations. You can fill the mind with new healing health thoughts and actions when you choose to use regular positive health intentions and affirmations. One such affirmation that I use every single day is this beauty – 

“Every passing day my body becomes more energetic, more healthy.”

Repeating affirmations like this one, over and over has absolutely helped me find new and positive steps into healing my health. Even, when the day is glum, simply allowing myself to find a place to be still brings me back to the heart of my affirmation and positivity reigns over the pain and suffering that maybe being felt. The process of repeating a sentence as an intention or affirmation, over and over regularly impresses the subconscious mind, so that it slowly starts transforming the body to align with the mental thoughts that you want to attract.

As I said before , there is more and more  profound evidence through medical research, about chemicals, naturally found in our bodies reacting differently to emotions in our  minds, thus making us negative or positive. When we are healthy and happy, the  chemicals  produce emotions that are helpful to us.  When we are sad and perhaps ill of health, these chemicals are harmful to our bodies. Thus, thoughts affect the body. It is clear that positive affirmations for health can have only positive effects on the body. 

So I believe, by selecting a affirmation that will help create new health boundaries is an important step to finding that wealth of health. The affirmation I mentioned earlier is on repeat many times a day internally and externally for me.  I will generally use one main affirmation for many months or until I can see it manifesting what I am affirming into my reality, but I do have other affirmations and intentions that I can use at particular times. Affirmations complement my more mainstream medical treatments BUT they do not replace them and nor would I want them too. I have not discontinued any treatment or medication, that my doctors have prescribed, however by using affirmations, I have strengthened my mind and body allowing positive change to help me achieve a much better journey towards holding the health and life that I want. By following this path, slowly but surely I am reducing medications and treatments to more natural and holistic ways of healing.

These are some of my other favourite affirmations that I have used and still use;

• My mind is calm and peaceful, allowing me to be more energetic & vibrant in thought and action.
• Every day is a new day full of hope, happiness and health.
• I am my own creator, because I create who I am and what I am.
• I breathe in deeply, so that every cell in my body is conscious to greatness.

So as I closed my journal this morning…..my breath took me to a place where I stand wth so much power.  That power is because I align so closely to the affirmation that sings in my heart with every breath I take and make. Even with my tired days, I can feel energy transforming my most inner self allowing within me that without a doubt health is wealth and I am becoming abundant in all areas of it.

If my ramblings today, about journaling and affirmations have helped you,  that makes me happy.  Because by sharing my experiences of living with invisible illness in despair and joy is why I light the flame for greater awareness. If we haven’t connected in social media yet, make sure you jump by and say hi on the following channels and if you want to light the flame for invisible illness, we launch tomorrow.

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the_barefoot_goddess

Much love
TBG 💋

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

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;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

TBG 💋

Depression & Chronic Illness, Deconstruct Your Every Breath…..

Tonight I write in a dark place……

The last week, I’ve noticed both mind and body sliding- is it because of all the therapies I’ve begun- is it a virus or an infection that has gotten hold of my immune system! No matter what it is life seems so unworthy of and for me right now! Things literally have me thinking that I have no resources for helping myself or anyone else. So why the fuck am I wandering this path for awareness for Functional Neurological Disorder & the many other chronic illnesses- well these circumstances are why!!

I know very well now, that surviving the depression that my health takes me into is so very scary. I also know that when these dark thoughts start reappearing it’s the red warning light flickering that I need to take even better care of myself. You see, depression and chronic illness deconstructs my every breath bringing the reappearance of the big scraggy black dog waltzing back through the door. This frightens the hell out of me and that’s something, even the most beautiful people around me doing all they can will never understand- christ I don’t even know why this, health roller coaster and its dog friend does this either.

In this last week I’ve completely lost my way, including an appetite for food and life,  so I thought if I jumped back into my strict juicefasting and meditation regime I could regather my energy and thoughts. But, alas no, I’ve become even more lethargic and exhausted – I have aches and pains like the worst autoimmune flare that ever there was! I don’t want to go to my many appointments and therapies – I just want it all to stop! I am done adulting!
So with those thoughts, I come back to today and it has felt like I literally can’t keep doing this any longer BUT oh I do!  What the fuck – I am full of contradictions tonight- I don’t want to live BUT, yet I want to live and fill my life with the visions, dreams and passions that fill me with hope and take the dark away. So, this is why I ramble tonight because I know I have some ability in reaching out into the world through blog , letting you, the one that is struggling too know,  it’s not just you that feels this destructive pull! Together through my scrambled thoughts and feelings of pain and sadness, hope and healing there is a future-if we can just see through the mist and messyness that life sits us in right now!

So, as I mentioned as this last week has moved forward- I’ve noticed my appetite disappearing, well to be perfect honest, I don’t have a big one anyway so to lose interest altogether- I know is wrong! WHY – because i know that i need food for energy and if I have no energy i can’t feel okay. I’m not saying that increasing my diet is going to fix these problems I am feeling but across my wandered journey I know that good healthy nutrition, helps more than everyone realises. I’ve learnt something about living with debilitating illnesses that affect my ability to eat and that is when I have a sustained and healthier appetite with clean nutrition it allows for a better and brighter ‘ME’ and if that’s the case I can function better which means just perhaps my mind and body will be able to recover from its functional flaws that I battle with at present.

Journaling tonight, right now seems cathartic, however I feel still so discouraged with this dark space that I have again landed in! I can’t believe what my physical health has done to my mental health and viceversa. I know I’m just scrambling at this point because it’s a matter of holding myself together.

Falling into depression and such darkness is my most difficult path with living with multiple chronic illnesses all of the time. I’m so tired of it. It is what makes me lose hope, but then I hear my medical specialists words whispering “there is time for everything YOU want life to be – it maybe different from the original vision, but life is still there for you to live”. With, these whispers, I just need to hold on. 

I dont know you, yes YOU, that is reading this or maybe I do BUT I know I definitely don’t know your individual struggles. I know we all have them at some point and if you are reading my struggles tonight, then I believe there’s hope and a reason I both put pen to paper and then to blog. This message is for me, but it’s for you too – Just surviving until tomorrow is  enough. Then, when tomorrow rises, let us then look at that day. What is important is that we stay alive and keep fighting for something better – something much better than this.I know it  won’t get any better if i give up. Suicide is not an option. If you have suicidal thoughts creeping into your mind, it is those even bigger flickering red warning lights telling yourself to be nicer to you in every way you can and I know because I’ve been in that place and that’s what scares me with this darkness that I sit in now. 

As I ponder for a moment, I realise that the words written are my ways, for again talking my  way through the mess and mist, whilst reaching for support. Let me reach for a  glass of water and take care of myself physically and the mental part will follow. I hope wherever you are and if you’ve resonated with this – you too will be able to reach for a glass of water and look after yourself tonight too and together we will get through this. 

Much Love

Lisa-Raie 💋
You can connect with me through;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

“Wandering Towards Wellness Globally”

My Walk With Invisible Illness…..

We are in the middle of Invisible Illness Awareness Week, so i’ve been thinking of a way to talk about what it actually is and how it affects me.

So to define invisible illness;

Invisible illnesses are chronic illnesses and conditions that significantly impair normal activities of daily living. 

The definition, tells us what it does but their are so many different spectrums of invisible illness, that everyone’s experience is different. My journey with invisible illness involves a complex list of illnesses, which include; fibromyalgia, mixed connective tissue disease including lupus SLE and Wegeners Granulomatosis, Ulcerative Colitis, anxiety, depression and functional neurological disorder. Each one of my illnesses joined together mix a chronic cocktail to significantly impair my life walk.

So, I’ve defined invisible illness and what it is to me, now what does a average day look like. This, is difficult to describe because everyday can be so very different to everyone that lives with these most chronic and varied conditions. So let me tell you a little bit about of how invisible illness can affect me, on any given day. My invisible illnesses leave me feeling so exhausted, that I feel like I am clinging to the edge of life but because nobody can see what and how I’m feeling, many times people judge me and tell me that what I’m feeling is not real, other times that I’m just a failure and many times,” oh Lisa Raie you are looking so well” but seriously I may be having one really bad day. Having people say these type of things, makes living with such chronic and complex invisible illnesses oh so, very lonely as I get so tired of having to prove my illnesses. I have infact lost many people along my journey. For the ones that I still call family, friends and colleagues they know that plans may need to be changed or postponed when pain and illness cause immense problems.  

Every day  I do the best I can, if I need to sleep, I now sleep, if I need to change booked commitments, I will change or cancel and if I’m told that I’ve let someone down – I just have to deal with it. It is hard to take when people get angry or upset, but I know that as much as I try and make them understand they can’t – why because unless you live with these chronically hidden illnesses, you can never feel what I am feeling. Many times, I’ve felt like saying – ” I wish you could feel what I feel ” but seriously I would never want anyone to feel what I live with.

Living with such invisible illnesses has taught me to be strong at times when I thought that my time maybe up. I’ve learnt what never giving up really means and it’s why I’m now wandering the globe talking and sharing my experiences so that those uneducated and ignorant to invisible illness become aware. When we can all walk together, it is my hope that further help, assistance and change can be given to all the invisible illness warriors and goddesses.
If you’ve resonated with my words, please connect with me over on my social media channels because we all walk as one and it would be great to walk as one together rather than tearing each other apart.

💋

http://www.facebook.com/iamfndaware

http://www.twitter.com/FND_Goddess

http://www.instagram.com:fnd_goddess

SnapChat – simply_lisaraie

Stand Strong, Stay Strong & Believe…….

Walking a journey with chronically invisible illnesses requires self belief!Why belief, well firstly, we need to know that our chronic illnesses are not in our heads. Ive learnt how critical how much being in the right mind and brain space plays a huge role in the steps with living the best possible life I can. Secondly, i can’t just think my way out of my illnesses. I or anyone can wish and hope for better days BUT very little comes from sitting, waiting and wishing. Nothing will change and actually wishing and hoping may actually make us feel more anxious, down and depressed.

When there is a sense of belief, with positive concentration, mindset and attitude, the drive for living despite the health challenges improves dramatically – yes my symptoms are still there but the actions let me walk taller through the challenges. So beliefs are oh so important for the chronic health walk of life. Our beliefs are formed from a state of mind that indicates what we are thinking is true. Beliefs form our behaviours. So when we form positive beliefs we can see how believing a certain way can affect us positively. Our behaviours absolutely need to support our beliefs because if we feel sad and depressed about our circumstances and situations, we will feel powerless and useless and we will most likely become closed in and shut off from life and our illness will dictate our paths and when this happens we become the identity of our illnesses. So stand true, stand strong to who we are, believe in ourselves, our message and our life purpose because when we believe that is true, we are so much more than our chronically invisible illnesses. When we believe in ourselves, we won’t feel like giving up even on those days that feel all too hard (and yes there are those days).

Let’s NOT tear each other down, it’s about walking together being strong and staying strong.

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Opening Up Honestly & Very Vulnerably About Living With Functional Neurological Disorder.(FND)

I have lived with multiple number of health complexities for many years – some of these are medically diagnosed but there are many symptoms that have left me free falling into a state of despair. This despair left me spiralling out of control physically, mentally and emotionally to a dark place, where seriously no one ever wants to go. I was ready to quit trying in every regard of life because health had deteriorated, I was struggling with being paralysed down my right side, I was having limb weakness, bodily jerks & twitches, dizziness, blackouts & many falls and of course I was struggling daily with my diagnosed medical issues. Luckily a hospital stay found a couple of new specialist doctors and they determined that these unexplained symptoms were what is referred to as ‘Functional Neurological Disorder’- FND. It allowed me to begin thinking and breathing a positive path again even though this only new neurological finding is still relatively new to medical research, there was findings of why my body is doing this. 

 I’m still facing the medically unexplained, due to FND having not that much information about it or its treatments, but it’s a diagnosis and that’s a start and purely and simply, I kind of knew deep within my soul that theses symptoms that I live with was not going to be a nice tidy diagnosis to live with or to be able to explain.

But the aim of this post is to raise awareness for myself and explore the possibility of connecting with others globally that have this disorder bringing connection and support.   
So how is ‘Functional Neurological Disorder’ explained;

 
I have so much gratitude for  my specialist neurologist for testing, testing and researching my symptoms and being able to determine, there is a problem within my functioning neurological system. The neurologist was completely open about how little they know about this area of health BUT reinforced that they know it is NOT, “all in the mind” which was beautifully cleansing for my anxiety, as I’ve been attacked and bullied by many telling me that there was nothing wrong and I am just crazy. For the first time ever, with these symptoms a medical professional was discussing a diagnosis and actually given me somewhere to go for all the questions that I have squished within me about what’s going on. The neurologist suggested getting familiar with http://www.neurosymptoms.org and  I can’t say how helpful this website has been and will be! Finally I was having a conversation with a medical specialist who was showing me compassion, empathy and understanding and I wonder why my other specialists could not be like this. Since having these conversations, I have had very positive and reassuring discussions with my GP, as well as my  neuro-physio and occupational therapist to making living more accessibly normal.
So going forward…..my inner voice still niggles a little about what if they are missing something serious, however,  it is becoming more clear to me that the ‘functional’ tag is probably going to be my tag for these symptoms at least and to be honest it comes with a sense of relief. A relief that these tortuous years of chasing explanation for these final unexplained symptoms might be behind me and everything that comes with each appointment – NOW, I can focus on managing what i live with.

It is taking a guts to write and even more guts to publish this post, because I still fear lots about being so open about this disorder because of the stigma given to these chronically invisible and very complex health challenges given by so many in the community.  But through being open, honest and very vulnerable, I hope to open up communication for others that are struggling with this disorder too. I want to increase awareness so that more research can be done with the hope that maybe medical evidence will have more answers for the people that live with functioning neurological symptoms but till then , I will work with my physio , occupational and psychological team on exercises to help my body rebuild.

If you are reading this today and your neurologist has discussed FND as a cause for your medical issues, send me a message and let’s connect and walk together supporting one another and raising much more awareness and assistance.

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