Just How Do I Define Invisible Illness…….I Do It By #lightingtheflame ๐Ÿ”ฅ

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;

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Much love to you all
TBG ๐Ÿ’‹

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Rehabilitation- The Path That Opens Up Wounds, That I Wanted Kept Buried.

Rehabilitation takes many paths to heal and recover from chronic illness and then as you begin doing the internal work, you find that the catalyst for the physical breakdown began long ago, in moments that I would rather forget.

Let me explain – 

I grew up in a narcissistic environment where I was conditioned to believe that only the voice of one person mattered. I learnt that only that person was allowed to have and express opinions. My voice was shut off in order to meet the needs of the house and instead at age eleven, I began the path of pleasing – I would cook and clean and look after younger siblings as well as get the best marks so that i could get acknowledged and celebrated but of course I didn’t. It was important for me to be perfect – that perfect child and student, because I thought if I was perfect I would eventually be celebrated- but again – NO, I never was!!! Across the journey from childhood to teens I fell in love with dancing (as a lot of little girls did) – this was my space to be free, to shine and star on stage and I did receiving medals and distinctions in my exams. But alas , that could not even continue because it was frowned upon and soon I lost what was my passionate purpose. 
As an adult now – I can see growing up in in a childhood like that , how awfully difficult it was and just perhaps keeping the emotional and physical abuse choked down inside could of impacted on the health challenges, both physically and mentally that I am facing in middle adulthood. I am tonight looking back and am even questioning my own value, as a wife a mother and a woman in the workplace because in all of those individual pathways I needed the perfection status – I needed to be celebrated but of course I wasn’t . Well I wasn’t in the mindset of how I grew up. Sitting here crying now as I write this, I can hear my husband telling me so many times, you are here now, you don’t need to live like that anymore. WHY , did I not listen way back when or across the thirty-two year journey that we have been together. I guess that’s what abuse does – it messes with you deep to the core  and then holding it all in, thinking you have life in control and everything balanced and settled, it all comes crashing down. 

In order to heal, it is time to start focusing on self love, self value and self worth and then as I have blogged about before a contented life will begin. Rehabilitation is now allowing me to move forward to โ€œrewireโ€ my brain and body to become one again – if you like , be born again to a life that I know i will love in every breath and step.

I must start at the beginning. I know already opening up and releasing some of these challenging moments of my life are going to trigger emotional flashbacks. It is going to be difficult because of having to remember being brought up in an emotionally neglected household where I would rarely or never receive compassion. I now realise that compassion is so essential for demonstrating empathy within childhood. This important skill was not properly taught to me as I was growing up  and perhaps this is why I pushed the kindness and compassion handle extraordinarily to my children. 

I keep stopping as I write this, telling myself to be patient – it’s something that my health challenges have taught me, but this time it seems even more important! There is a lot of shit, to release , so internal kindheartedness toward myself needs to start NOW. As I am writing this, I am thinking how I would react to someone else in similar circumstances, or what a close friend perhaps would say to me to give comfort to this unsettled self. What are the words I need to say to myself as I release the long suffered pain and rebirth my health and life.
I think I need to eliminate my inner most harshest critic and I need to learn to love myself. My โ€œinner childโ€ – little Lisa-Raie holds on to this hope that if i was only smarter , more helpful, more talented, and without any flaws perhaps I would of been loved. But perhaps my “inner child” was actually defective and unlovable and maybe that’s why the physical symptoms of today are a result of the failure of not finding perfection! These steps are a  self reflection process that I need to take, I am not meaning to self criticise it’s the stepping right back into the dark, to grasp the past so it can be exhaled and removed so healing can take place. I keep hearing my little voice, that inner critic continuing the past experiences and it is screaming toxic shame. I know why, I squashed all of this down – not wanting to remember! I just want to put my fingers in my ears and sing lalalala!!!  

But WAIT, what if I have been beginning to eliminate my past shame by learning the steps through showing my vulnerable side with safe people. Over, the last few months, I’ve begun connecting with safe people, I’ve started telling my story.

Yes, that’s exactly what I’ve been doing. I’ve started building self trust, by visualising my traumatic childhood as a way to start developing a stronger and more comforting, accepting, secure, and safer adult self.  The best way to learn self trust is to start treating yourself well.

Sitting here surrounded by my husband, one daughter and one son who love me dearly I can see how growing up in a narcissistic environment how much I missed out on healthy role modeling. As I recover these memories, I am feeling failed as a mother and a wife. Sorry, for swearing, BUT fuck this healing is hard! Keep going though, get it out – repair and rewire!!!  I can do this, it’s now that the self rejecting self STOPS and the self repairing  BEGINS. YES, I CAN DO THIS!!! Embrace younger self with the warmth and acceptance and let’s step into exercising the truest form of self love.

Growing up I learnt to focus only on the voice, reactions and power of one person. I think NOW looking at the adult self (ME), I really had no idea how to look internally at my own needs. As a child and teen, I was always striving to please, as a wife, mother and woman in the workplace the same. Always striving to be perfect when in fact there is no such thing as perfect. I think across my life journey particularly as a mother of five children, I developed an internal nurturer but I never really let it have a strong presence for the world to see, in case I was punished somehow. How stupid, tonight as I write I have so much self criticism – oh to release these pits of past perils! Oh self love, oh self love – where are you! Oh crickey, it’s 1.13AM, let me begin a process that can enable this healing journey to resurrect my physical and mental health. 

Step One, tomorrow or may I say later today this list is going to be the intentions I will set myself each and everyday to do for me, to be happy and healthy and live the life that is in all my visions and dreams and to which my purpose and passion pushes me towards.

  1. Meditate
  2. Rehab exercises to rebuild my body 
  3. Say daily that “I am worthy, loved and enough”
  4. If I am tired – that is ok, let myself rest
  5. If I need to cry, let myself cry
  6. Fill my body with good nutrition
  7. Crochet, because creating heals

Okay, so this is just the truest and real start line for where healing illness and recovery from abuse begins. It is a process, that may take a lifetime to release and unravel but with the gracious guidance of my husband who has never strayed and now the solid BUT nurturing rehabilitation team of Erin, Ann and Peter to guide me , I know I will allow myself the gifts of  grace, and small steps to enjoy each day as it comes and be mindful of what I will be experiencing, finding and learning along the way. Ultimately, this recovery process will involve eliminating my little ME, my inner harshest critic and toxic shame that resides in my head so that the physical harm and pain can heal and my body be strengthened without too much harm being done. 
Let me begin, but first let me sleep. ๐Ÿ™๐Ÿป

This has been very confronting writing this blog but also very cathartic. As I press publish, I have such strong anxieties and vulnerabilities flooding pain through every part of my body….and I hope there is something that my words have helped you with.

This moment marks my truest sense of gratitude that life is beginning NOW.
Lisa-Raie ๐Ÿ’‹
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” I Am Wandering Towards Wellness Globally”

Living On The Edge With Chronic Illness – A Step Into The Darkness Means Asking For Help…….

So today, my thoughts are going back to when everything was oh so dark and in despair and I felt like I could not keep going.  WHY – Because I want you reading this to know that you are not alone in your journey with chronic pain and debilitating invisible illnesses.

โ€‹โ€‹
You see, when you are chronically ill, apart from the everyday pain and illness you most probably will suffer from forms of depression, loss, loneliness and perhaps even  thoughts of suicide,  but you will rarely discuss these because you think you will be judged as weak. I want to speak to you, openly about the fact that these topics are ones that you don’t want to dismiss or ignore and I am speaking from personal experience. 
By speaking of my own journey, honestly and vulnerably , I hope that I may help you feel more comfortable about talking about your struggles with living with chronic illness everyday. I want to show you that by choosing to ignore these dark moments, only can make the problems that you are dealing with even bigger, scarier AND lonelier. Being honest opens up doors to your inner most private struggles and lets other people in to help.  

So let me explain a little bit of my experience. Obviously my physical health was caused by multiple chronic illnesses of autoimmune & neurological breakdowns but I also started to notice a  mental deterioration clearly by middle of 2015. I put it down to extra tiredness due to opening up my own business as a life coach and yoga teacher with my own studio. I know that my chronic illnesses are part of me and this business was my way of opening the journey up to the greater world. I wanted this so much, so I just told myself to keep pushing through the daily processes of life. 

Let me stop right here, now and explain that my living in silence with my pain and illness is an oh so clear example of how this modern world makes surviving chronic illness and is without a doubt, one of the hardest hurdles to overcome. 

Going back to the beginning……my health began to decline and initially , I approached it as though I had a bad flu. But that flu, never went away so off to the doctors, I wen to find the problem, so again I could be well. Right – oh no, not so! As months went on and one year turned into multiple years my pain and suffering werenโ€™t getting better , in fact, they were worsening. I tried all the mainstream medical philosophies, I stepped into alternative therapies , which may I say allowed me to find a path through for a while but as life was seemingly moving, my thought process began to divert from those who surrounded me. I kept going to the doctor, many doctors actually and many times, over and over but that is where my original plan failed. The pain was from nerve damage, but that was where the understanding of my situation stopped. My body kept adding more and more  symptoms and the doctors seemed to have less understanding and compassion of my daily life . Particular autoimmune illnesses were diagnosed but confusion regarding what was impacting my health increased as did my pain and with each failed attempt at managing the pain or finding a diagnosis, my life  was falling through and into deeper levels of darkness .

I can tell you that as this journey of mine wandered further, I felt a thick disconnect from everything. Everyday became a blur and what was once important no longer seemed real.  I knew I was a part of the living world and I knew I had this passion and purpose but  from 2015 it felt more like I was watching it from a million years away than from reality. This life – my life it seemed so, so far away. I began to wonder if I would ever live that life that was so vividly clear in my visions and dreams. I had once planned to make world wide impact but my days consisted of lying in bed using  my electric blanket and medication or anything and everything I could think of to lessen the pain.  There would be days where I would sit up but I would still be taking high doses of pain medication and my trusty heated throw rug or sitting outside in 40 degree days just to feel well. That is NOT life. The thoughts of being well and free of these debilitating chronic illnesses were not even near being real and in that state, I just wanted  to decrease my breath into a life of living – YES, I wanted to die! I wanted relief, I wanted wellness , even just a minute. That obviously wasn’t to be, so thoughts of dying came more readily like we breathe our most magical visions and dreams had for so long. The only thing was  I thought was to go to sleep permanently- you see being in chronic pain and illness makes you so tired , so you sleep but then you wake up.  Even the short bursts of  sleep I was getting, only gave me short term relief, but my bodyโ€™s pain  and suffering continued. So fast track to late 2015, early 2016 and I was done with this pain and these illnesses- some known about , others even doctors were left flabbergasted! SUICIDE was going to be my release from this world that became all too hard. I was angry, I was hurting and no one could help me.  I was in a very dark place that I could not get out of ! So I entered hospital early 2016 with pneumonia, which I believe spiralled me further into despair. I soon was discharged, with the doctors giving me the same scripted announcement- “you will need to rest , so that you can best recover because of all your other health complexities”. I was stuck in self destruct mode with such thoughts as โ€œtheyโ€™ll be sorry,โ€ or โ€œIโ€™ll show them.โ€ My pain and illness were my permanent and realistic nightmare everyday.  My  physical and mental health could not survive another spectrum of life with this level of suffering, death would be a relief, it would be an end to this awful pain and it would take me as the burden away from those closest to me. The only problem was my loved ones, as much as I wanted to leave the reality of death I didn’t want to leave them. I tried  making my husband and children realise that by killing myself it would be kindness .  I so much wanted them to understand this agony, that I was living, so that I could find relief. At this point, I was  only alive because of the people I loved, but then they left me the internal distress was at breaking point.

Come to March 2016, I was taking massive amounts of strong pain medication but just couldn’t get relief, so I went back to  hospital.  I was in a bad state, confused , in pain, in anguish , constantly falling over and even, hospital where I thought that these people would understand me  and help me were not!  I resented myself, everybody and everything – Noone really had any clue how much pain I was suffering . In that instance , I did something – I tried to kill myself. I tried to escape the hospital ward and take myself to the busy road outside and be hit by a truck. Obviously, it failed – I fell outside of the lift – but it brought me to the NOW to finding help that was there, being open to accept it. 

Being alive and living are two different things which I had forgotten after falling victim to my own health complexities, I got lost in the mist of extreme darkness and depression because, I was afraid to accept help. I thought if I accepted help, that I would be showing an even greater sign of weakness. How incorrect the thoughts (my thoughts) are when mental health disintegrates. Accepting help and building a team of health and personal support is the biggest mental and physical gain that I have given to myself. I now, know that all life needs when in these most anxious moments of life, is honest conversations regarding an understanding and  compassion. I am grateful, for my new doctor whilst in hospital as it was, he who made me realise that coming to hospital and accepting admission was the best and only option for me. It was probably my most loneliest hospital stay but also the most important 3 weeks of my life. It gave me new set of medications, treatments and a resilience to get me through the days living with chronic illness because we walk inseparable through life.

To conclude my experience, I have learnt that at this time in the modern day world, depression and suicide are as much a part of chronic illness as all the other invisible symptoms. The problem is that this world, ignores or perhaps more correctly chooses to avoid the subject. This then leaves the chronically ill like myselff, alone to cope with  the demons and darkness that nobody should have too live with. I believe if, i  had of found that new doctor months and possibly years earlier, who sat with me  and had the full non judgemental conversation,  my journey may not have  been so heavy and dark leaving me to progress like I am now. 

As I am writing this , this conversation still terrifies me but I also know talking about it helps ideas and perspectives make more space within the brain for new opportunities that life may not yet have offered. Always  remember to show kindness, compassion and understanding;to yourself  because our inner most  thoughts arenโ€™t because of us, it’s because of the external journeys that we are living. I am now reteaching myself using mindfulness, journaling and talking about how to no longer hold on to my fear, my pain or my illnesses. For the remainder of my journey of life with chronic illness or not I want to feel alive . So by me being able to write and talk my experiences, I hope that this may help some of you and together we can begin to walk together and tear down the stigma of being vulnerable and out of reach of a life to be wandered towards wellness and wonderful experiences.

โ€‹โ€‹

Lisa-Raie

(AKA – The Barefoot Goddess) ๐Ÿ’‹

If this resonates anyway please let me know either here or on my other social media channels;

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Loving Life, Living Life….

To be loving life and living life is the greatest magic of all. But what does this mean? Well to be honest my journey of life has been a full of ups and downs, highs and lows, leading me to the now where my journey of life looks something like this;

When you’ve wandered so many paths looking for that tranquil river to sit quietly beside, BUT all you find is a messy and unkept pile of rocks – you are forced to stop! That forced stop, allows you to actually restart the journey of life, as I have found. You see, being swallowed whole and then spat out, has taught me that being on the journey of life, is the ability to completely surrender into myself. It’s about accepting that i am IMPERFECTLY perfect. Living passionately with all the raw edges glowing gives me sass to be able to wander in just the right vibe and energy. There is no one but me,  who is capable of actioning every step as required, within and through challenges to take me to my preferred destination.

Thinking about living life afflicted by multiple chronic illnesses left me oh so dark and changed, every aspect of my being, but finally getting the assistance I need has awakened me, it’s allowed me to see and feel fully in love totally with the awareness that being happy gives. Living life, on that messy bed of rocks doesn’t give me life. That path walked allowed me, two seconds of joy and then everything soon became dark and twisted. I was left feeling like my star had lost its sparkle or in fact had shattered into pieces. Being forced to take different action and direction, I also ensure that nobody or anything can stop my love of living life. So from NOW, everyday I need to give myself permission to stop and breathe allowing my sun and stars to shine brightly because I can then wander chasing the rainbows of life that are so clearly visioned inside of my heart and soul. Being on this journey, then allows others to see me and then wander alongside me creating the same vibe and energy.

 So living and loving life means being able to wander with all of your raw edges showing, stepping forward with all the sass of a star shining brightly, but yet knowing that you can step behind a cloud when it’s time to rest. It means loving every step and wiping out the misery of any health and subsequent challenges that you may have found on past paths wandered and let’s you join so many on a bright and magical walk of life! Let’s all begin to wander together by telling our stories and showing each other who we really are, so that the world can then breathe togetherness – that’s what loving and living life is!

I’d love to know what loving and living life to you is? Please feel free to let me know here in this space or in one of my social media channels;

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Much Love

Lisa-Raie (The Barefoot Goddess) ๐Ÿ‘ฃ

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.

๐Ÿ’‹