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 πŸ’‹

Tired, Weary, Broken & Fucked Up……..

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.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/Just_1_Goddess

http://www.instagram.com/the__barefoot__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 πŸ’‹

β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”

“Oh But You Don’t Look Sick”…..

Lately, I have been looking back at the journey I’ve wandered and it’s sad to think that I’ve been chronically ill since 2012. Every single day, since then I’ve learnt so much about the ups and downs related to my hidden health conditions. I want you to know that these health conditions use what I would describe as a kind of lottery system, that give me highest of highs and the frightfully lowest of lows. Anyway, with that said, I sit here journaling for the benefit of all the sick and healthy people across the world. As I walk and talk my journey to more people with so many varied chronic illnesses, i see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person. I want to tell you, out in the big wide world how the phrase, “Oh but you don’t look sick” can seriously impact those people like myself, who suffer with invisible and chronic illnesses . It is time to look deeper into  what chronic pain and chronic illness looks like in the real world, so that they can receive the necessary medical care. 

As you are reading this, you may have just connected with me through social media, this blog or maybe you might be a good friend or family member. I just want to take an extra moment to talk to you about the phrase that I mentioned earlier “oh but you don’t look sick.” I want you to remember that as you are saying that to me, you have never seen me at home on the yukkiest and darkest days. So, at the moment that you are seeing me – you maybe right, I may not look sick or just because you can’t see my pain or illness, it doesn’t mean I am feeling at my weakest. Sometimes, dressing up helps mood, or even if it doesn’t help my pain, it helps to mask it. I’m so sorry if that messes up the idea of looking sick – but that is one indication of chronic and invisible illness.  I don’t mean to sound ungrateful for what you may mean as a compliment, but it is kind of insulting to me or anyone that is chronically ill. That little phrase dismisses the pain and suffering that I and so many go through on a day to day basis. So, if we have just met, and I open up to you about my painful neurological condition and I don’t even begin to mention my other autoimmune conditions that I live with, please don’t think you’re complimenting me. If you follow it up with but “you’re so strong ,” you are implying that being sick should make me weak. Maybe you think I’m exaggerating my pain because you perceive me as strong. When you are ill for such a long time, strength fades, but pain doesn’t.

This journaling and blogging session is not about only me, it’s about all of the incredible souls that I have connected with through support groups to keep me from giving up. By telling me that i don’t look sick and that I’m strong, BRAVE or beautiful you are reinforcing the idea that I don’t want these medical conditions taken seriously. Maybe I should not take any pride in my appearance, when I am on my sickest days so your conceptions of these illnesses and my illness will fit together. The thoughts of what being chronically ill looks like is what stops people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with respect. We are the people who even lose the much needed family support during their illnesses because their families do not understand or believe that being sick can look so many different ways. SICK LOOKS DIFFERENT FOR DIFFERENT PEOPLE ON DIFFERENT DAYS. 

You don’t see me at home. You don’t see me the way my close network do. The way I live is so horribly embarrassing that even some of my doctors don’t see all of the pain. The mask I apply is there, because of the negative experiences with showing vulnerability. Even the necessary doctors’ appointments and my God, there are many are excruciating hard because  it means that I have to take a shower with energy that I do not have. I let many of you see what I want you to see because to me it feels uncomfortable with showing you the truth. I don’t want to be ridiculed by the “oh but you don’t look sick” scenario each time I venture out.  So, if you see me outside of my home when I’m dressed up, don’t presume. Living a chronically invisible ill life is isolating and lonely and there are many days that I don’t have the energy to make myself look presentable. There appears a huge amount of stigma around when we the chronically ill can’t shower ourselves because we feel that sickly, but there is just as much judgement because you can’t see the whole story within a moments notice.  That’s why you only see me and most invisibly chronic ill people when we apparently don’t look sick. 

So,  I can’t explain my whole life’s chronically ill story across my blog or in a short conversation because without the endless health specialists notes and medical timelines,  I cannot tell you about the hours and money that have gone into tests and examinations that I’ve had done and then there is all the extra stuff that I have taken or done to maintain a manageable pain level. In conversations apart from now I won’t tell you how many doctor visits that I average a week or how many pills that I’ve tried and have had horrible side effects or allergic toxic reactions. I won’t tell you about the pain of when the doctors don’t know what to do with me – yes, I have been turned away by many doctors because I’m too complicated !!! I want you to understand the frustrations that I and so many deal with on any given day. Being chronically ill is like you are slowly losing your sanity and that’s what makes us feel even worse. So if I brush my hair to try and look ok when I leave the house, but I carry so much pain behind the pretty faced selfie don’t think that’s my everyday experience. I go out of my way to document the moments that I enjoy life, so when everyone else is out there having amazing and exciting life experiences and I am alone in my lounge room with my heated blanket I can see evidence of the few times life shined.
So, to end positively, I do appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don’t know you or you think that “but you don’t look sick” phrase you aren’t complimenting me – so it’s probably best to stay quiet, with my favourite saying “if you can’t say anything nice – don’t say anything at all”.

             Life NOW- 2016 & beyond!

** I want to tell you that it’s at this point along the journey looking for healing and wellness through endless doctors sessions and research that I am now, standing strong because of a doctor that saw me at my weakest and was not going to let me take my own life. I am currently undertaking weekly physical and psychological therapies in order to be strong and well. I have also returned to my vegan dietary choice to strengthen and alkalise my internal health. Through this therapy, my love for writing again came and why this blogging map is here for you but probably what’s happened is my love for mindfulness with meditation and yoga. I am stepping a new and revived pathway to trigger brain, body, health and life to commit to a life to love. This is me, this is my passion and purpose – this is life being authentic and vulnerable so if you see, me out and about don’t utter the words “oh but you don’t look sick”. I have a incredible long journey to go, but I am on a path for myself and so many others. Let’s walk together for life in brilliant colours!**

I hope you may have resonated with some part of this – if so make sure you connect and let me know;

SOCIAL MEDIA 

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
Lisa-Raie πŸ’‹

Wandering Towards Wellness, Globally”

That’s The Thing About Pain….It Demands To Be Felt πŸ™πŸ»


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, β€œthe 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.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

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

Lisa-Raie πŸ’‹
“Wandering Towards Wellness, Globally”

Chronic Pain & Illness Deserve Respect and Research Too…….

CHRONIC PAIN & ILLNESS DESERVE THE SAME AMOUNT OF RESPECT and RESEARCH AS CANCERS……please read & share doing so you support your friends wandering a lonely path towards finding wellness……..

I WANT THESE WORDS, SHARED ACROSS OUR GLOBE, SO THAT CONVERSATIONS CAN BE BEGUN TO HELP AND SUPPORT CHRONIC PAIN & ILLNESS PATIENTS . It starts with one and if just one other person then shares this, then another, then another-before long we will have a global conversation and greater awareness of the importance for better healthcare for chronic and invisible illness.
THIS IS MY FIRST AWARENESS CHALLENGE-PLEASE HELP ME SHARE MY MESSAGE GLOBALLY……and this is why;

More work needs to be done for chronic pain and illness. The numbers of people globally feeling that they have no way out of their chronic pain and illness is growing at scary rates. 
Our Governments need to wake up and give this the same attention it gives to cancer. One day of the year, for “RUOK” day, that spotlights mental illness and depression doesn’t cut it and the effects that these invisible illnesses have on the individuals, families and friends is devastating.

I can say this, because I breathe, walk and talk the journey everyday. It’s my mission to open up more discussion and conversation for myself and many others. WHY, because we all deserve a life that we love. 

I WANT THESE WORDS, SHARED ACROSS OUR GLOBE, SO THAT CONVERSATIONS CAN BE BEGUN TO HELP AND SUPPORT CHRONIC PAIN & ILLNESS PATIENTS .
Let’s send this viral and start walking, talking and wandering towards a life of wellness.

Living With Chronic Illness – Part 1 – Functional Neurological Disorder.

Living with debilitating chronic and invisible illnesses are so very hard. This is why I share my story, so that greater awareness can be brought to the world. Today I share what will be a series of blogs about the different illnesses that I live with. 

The  illness I am beginning with is (FND) Functional Neurological Disorder and below is what it involves and the many symptoms that I suffer with – at times all at the same time, and other times seperately. (FND) or Functional Neurological 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 and many of them can be very disabling. Living with FND, sees me experience a number of symptoms at the same time or  perhaps just living with one or two symptoms at a time as I spoke about earlier. Just as with my other chronic illness and autoimmunity, I can find frequency and severity in my symptoms. Also a lot of these symptoms are also found in the diagnosis of MS & Parkinson’s Disease making it high level debilitating, life changing and hard to diagnose.

Below I list the particular groups of symptoms that are commonly found in FND and to which I live with;

Motor & Movement Symptoms;

  • Shaking, mostly found in my arms or legs 
  • Uncontrollable and perhaps painful muscle spasms usually in my hands or feet. 
  • Uncontrollable movements such as jerks and twitches.
  • Problems with walking such as dragging my leg and uneven steps causing many falls.
  •  Limb weakness within my arms or legs where it doesn’t feel normal or I can’t hold any weight through them.
  • Paralysis with an inability to move any part of the body, usually on one side only but not always, which lasts a period of hours, days or longer. At present I have paralysis in the right side of my body which has been with me for many months.
  • Swallowing difficulties where I  can lose the ability to swallow or a it may feel like i have a lump in my throat.
  • Difficulties with my speech when my words may become slurred, stuttered or even maybe lost temporarily altogether.
  • Bladder and bowel problems which may include loss of sensation leading to incontinence and some kind of catheterisation.

Sensory symptoms;

  • Dizziness is the feeling of being lightheaded and not in balance and sometimes feels like my surroundings are spinning.
  • Being sensitive to light, sound, smell, touch or taste is a ongoing familiar symptom.
  • Nerve pain often feels like my skin is crawling with bugs and sometimes gives me electric shock sensations.

Brain Symptoms;

  • Memory difficulties and/or loss.
  • Poor concentration.
  • Word finding difficulty.

Other areas that can be associated with FND can be;

  • Chronicpain
  • Migraine
  • Fibromyalgia
  • Stress
  • Anxiety
  • Depression
  • Seizures

This is life as I know it and at present there is little known about FND, so my medications and treatment plans are very much being trialled. It is very much invidualised to my particular journey. It is my mission to raise awareness and funds so that more research can be done to help myself and so many others find a way to live free of functional neurological disorder.

I would love to connect with you, if you or someone you know, also lives with FND. Please connect with me here or perhaps on one of my social media accounts.

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Much love

LR The barefoot goddess

πŸ’‹

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.

πŸ’‹

http://www.facebook.com/iamfndaware

http://www.twitter.com/FND_Goddess

http://www.instagram.com:fnd_goddess

SnapChat – simply_lisaraie