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.

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http://www.facebook.com/iamfndaware

http://www.twitter.com/FND_Goddess

http://www.instagram.com:fnd_goddess

SnapChat – simply_lisaraie

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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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Shining The Light….⭐️⭐️⭐️

My mission is to shine the light on Functional Neurological Disorder and so many of the chronic and invisible illnesses that live through the goddesses & warriors of the world. In doing so , I will raise much needed awareness and assistance and become one of he greatest not for profit foundations the globe has seen.

Will you walk with me on this mission, shining the light?

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Wake Up & Walk Your Passion β€οΈ

As I walk this journey across life I’ve had goals and plans BUT it’s not till recently that my true passions and purposes have been transcribed into the real world. 

With those actions it’s allowed my message and purpose to be truly aligned internally & externally. 

From today I want to open the globe so that my purpose of assisting all that live with chronic illness through awareness and assistance because there is way to much stigma through ignorance and uneducated people and circumstances.

Today, I am here to ask you to join me, the FND_Goddess to walk as a tribe together. So “let’s not tear each other down, it’s about walking together”.

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Mental Health & Illness When Will We All Walk Together……

So today, I became a little down and not just because I’m coming down with a cold…..it’s because just when I thought the world is becoming more aware of #mentalhealth and #mentalillness we fall backwards down the stairs. This happened only last weekend by GWS AFL footballer Shane Mumford with his abuse slammed at swans star Lance “Buddy” Franklin. I believe this footballer has crossed the line of extreme behaviour. Living with a mental illness is extremely difficult and one that takes a lot of strength and energy to recover from. When we have ignorant and uneducated people slamming you with abuse, it does nothing to help those that have recovered or living with their particular mental health challenges. When will we finally have community awareness that builds educational togetherness and strength for mental health.

Do you agree with me, I would love to know your thoughts?

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