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

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

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

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

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

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

Much love 

Lisa-Raie

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

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

What’s The Worst Thing About My Journey With Chronic Illness???

“What’s the worst thing about my journey with chronic illness ?” I would have to say without a doubt that is the hardest question to answer. But, let me wander this journey with you here and explain why.

The struggles with chronic illness are all too real and present with every breath and step in life that I can’t just pick one thing that depicts my worst. But allowing myself to stop and reflect, I’ve realised that so many times I’ve doubted myself and my life choices. 

WHY – well with my illnesses and disorders there are so many challenges that have bombarded my body for so many years now that unfortunately my mind has become a victim too. I now see life and the world through different eyes because I’ve seen everyday  feeling the worst pain, having the most horrible symptoms, unable to experience and enjoy my favourite activities and no matter how calm and positive I tried to feel, there is such a negative anxiety filling me up. It was at that point and it’s only been recently let me tell you that I realised I had a further problem and that was depression. Life, was slowly spiralling out of control and it wasn’t until I was hospitalised that I became all too aware of what it was doing to me, so I think that’s probably the worst thing within in my chronic illness journey. 

Depression is not some imaginative little scene dancing within my head – it’s full of the most raw and real emotion that creates so many negative and hopeless thoughts than anybody could ever fathom. When in the deepest and darkest moments of despair even the most positive of people could not even bring the good energy out of me and this left me feeling more hopeless, alone and definitely lead me to doubting myself and making choices that I would not normally make. Depression has this power over the mind like the chronic symptoms impacting my body. Because of the impact of physical impairment, through my physical illnesses I learned that my brain functions had slipped a few levels on the ‘normality’ scale with my mental illness. Alas, all the inner walls cave in.

Here, I was just thinking that my new physical symptoms like limb paralysis and weakness, speech problems, etc were part of my longer walked journey illnesses and would be flares that would fade over certain time just as the other physical flares do. But this I learned was about what my health conditions, had developed into. When I and so many have had to live with physical ailments for a long period, the brain also then becomes ill. Working with a number of specialists i realised it is going to take even more work and medication to bring myself back to a level of mindful existence and allowing a quality of life that I desire. With, this new knowledge, I could of sunk further into depression and regressed further into myself and a land of unknown BUT I knew that’s not what my life was meant for. 

Looking at life with different eyes, I was excited to step in and take action to begin a journey of regaining mental health so that I could continue tackling the physical challenges on health firstly and importantly for ME but also so I could show others what is possible. Life lead me to having to overcome fears of being seen a certain way , it was accepting that my vulnerable state had been compromised. In accepting and stepping into these challenges I could accept help. 
So bring me forward to, today I am wandering a path back to the light of day with ME back on the agenda for what has always been my vision, purpose and message of living a life to love. I have accepted that I need assistance with a 4 wheeler walker to reclaim balance and strength to walk again. I know that I need to stop and take time to breathe and rest. Best of all I know that I need teams of people around me, because when i surround myself with a range of different people and experiences, I will have all the power and strength that I need to stay well and live well. My medical team are of a neurologist, rheumatologist, psychologist, neuro-physio and a list that goes on will give me mental and physical health. Family & friends will give me my passion to shine and walk my dreams. Then there are the new team of soul sista’s that I am connecting with globally that inspires and motivates me to walk and talk my story building awareness for all that are walking a journey with chronic illnesses looking for a life to love.

So the worst part about my chronic illness is, definitely depression and the inability to see and feel that my mind was my own worst enemy and causing me so much further despair. Now, sitting happier on my sofa i’m beginning to again enjoy bliss of being comfortable in my own life so that I can step into your lives. 

Life is a ever changing collection of movements and I know that I need to be slow and steady to wander my goddess journey. I accept all of my illnesses and yes there will still be days of utter frustration that will take me to that cliff edge, BUT I now understand that those days are just a inner message from my mind and body that I am going to fast. Wander slowly, breathe deeply and believe and live every dream because it is possible. Me landing in depression with a damaged mental health, was my trigger that my journey had got off track , and yes it’s the worst thing but it was probably also the saviour in a crazy kind of way.

Please if you’ve resonated with this in anyway, I would love to hear your feedback and if you too are walking a life with chronic illness- what is the worst thing you’ve found along your journey.

Much Love 

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** Special Mention; To my new connected soul sista’s, you all light me up everyday and allow me to rebuild dreams that had been lost in darkness.

** To my husband-you’ve been so strong and with me through everything and even when I lost faith-you still had it! That is why, now I’m stepping with a new breath more powerful than before. I often, tell you I love you BUT seriously you will never realise how blessed I am to have you. 

** To My youngest child – you are a guardian angel, however your journey has been so very difficult and not even I can understand the path that you’ve had to endure, with ASD, genetic mutations and other intellectual differences to direct you through life. You are the most loving now young adult that inspires me to keep walking tall for my dream of a health and life to live. 

Please if you would like to connect further, find me on social media at;

http://www.facebook.com/IAmFNDaware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

“Let’s Walk Together And Not Tear Each Other Down”

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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Life’s little bus ride feeling every bump!

           #WeAreAllInThisTogether

You know those days – It’s called life!

Life is a journey-on a bus that hits some fucking big bumps and we all ride it . It hurts at times and it’s those biggest bumps that bring on suffering. In those moments of suffering, we can feel like an outcast, as if on the wrong bus – like there is another bus driving along a different road. This other bus, is filled with a tribe of passengers who are all healthy, happy, well dressed and well liked. They are positive people who shout out with harmonious energy,they never let anything bore or aggravate them and they certainly never jump on and ride the bumpy route of the journey of life. But alas, we all long to be on that bus – that’s the bus which is our vision, our passion, our dreams – what we sit on is, the bus of ‘impairment’ because we become stuck. This is the illusion that so many of us struggle with and is what sits us all alone in our weirdness, uncertainty and full of anxious fear, feeling like that lost person on the highway of life. Of course we don’t always feel like this. Sometimes is just a hiccup that washes over us BUT sometimes it feels like a full tidal wave-we sit, we slide, we fall and then suddenly we’re back connected to our tribe – suddenly we belong again!

These are the thoughts and feelings that happen to ME and I know they happen to YOU. It’s part of living lives online and in the modern world where we are connected more than ever, able to share it all, yet we are so very alone!

If you are feeling like you are standing at the wrong bus stop, or on that wrong bus – Stop, Remember who you really are & What your true purpose and message is – then take a moment to breathe and reflect before beginning to walk or ride that bus of life again!

If this resonates at any stage please let me know, either by liking , sharing or commenting.

Much love 💋

Introducing Myself…

Hello & Welcome to my blog,

I’m just a goddess wandering the globes shores barefoot looking for life free from health complexities which include, invisible illness, chronic pain, anxiety & depression.
You will find me at my happiest, sitting by the ocean with my journal, pen, yarn, crochet hook, vegan food and meditation cushion.
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