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 πŸ’‹

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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 πŸ’‹

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.

πŸ’‹

Understanding Chronic Nerve Pain – Neuropathy!

Chronic Nerve Pain it keeps you awake all night…….Let me explain!

So I think everybody at some stage has had tingles or numb fingers or toes or perhaps even felt the nerve at the back of their leg twitch. These are all normal but nothing prepares you for the effects of your nervous system going into major short-circuit mode or in other words CHRONIC NERVE PAIN!
When that happens, you may well find out what it’s like to be one of the millions of people across the world who are living with neuropathy. What is neuropathy? It simply is nerve damage and the cure is? Well …..there isn’t one.

However, those facts tell people who aren’t affected absolutely nothing about what life is like with this chronically difficult to treat condition. Most people have no concept of how nerves work and how essential they are to daily life anyway (why would you, when everything works as it should!) so therefore find it impossible to understand what happens when the nervous system breaks down.

The neuropathy sufferer is faced with the task of explaining their mysteriously weird symptoms to many people who disbelieve what is being felt. 
So as one that is being kept awake a great deal of every night let me explain what happens, Often resulting from damage or degeneration to the nerve itself and cells, that protect the nerves of us the neuropathy sufferers are subjected to a series of confusing and functional breakdowns which send out wrong messages, or no messages at all. It basically can be compared to a short circuit in a electrical system resulting in feelings and sensations that are  pretty unique to the sufferers health issues. Neuropathy affects many people from all over the globe. What does it feel like and why are its symptoms so difficult to explain? There are over 100 causes and also over 100 types of neuropathy, so diagnosing exactly how someone feels with their neuropathy really depends on where the nerve damage is happening and what part of your body is being affected. 

Generally, neuropathy falls into one of the following four categories:

  • Motor Neuropathy;

Motor means movement, so motor neuropathy is damage to the nerves that control muscular activity and movement in the body. It generally affects feet, legs, hands and arms but can also affect speech.

  • SensoryNeuropathy; 

Sensory means touch, so sensory neuropathy is damage to the nerves controlling what and how you feel. So it can affect how you feel pain, or even the lightest of touches.

  • Autonomic Neuropathy;

Autonomic means involuntary, so autonomic neuropathy affects the nerves directing bodily functions you aren’t aware of and have little control over, such as breathing and heartbeat but also digestion (including bladder and bowel functions), sexual response and circulatory problems. It’s easily the neuropathy with the most serious symptoms.

  • Combination Neuropathies;

A nightmare for many, when you have a combination of the above problems.

So I’ve told you about the types of neuropathy and that what is being felt is like nothing you can actually describe but where does neuropathy strike in the body. Well I would say, most people suffer nerve pain problems in their feet first. Feet are at the end of the nerve pathways and the furthest away from the central nervous system. So perhaps it is logical that problems would happen there first. So back to the feet, where the majority of people first notice something going wrong but neuropathy is never an immediate finding – it can take years to develop and creeps up on you without you really noticing a pattern developing – it’s part of the reason why it is so difficult to diagnose and treat. Initially, you may suffer a loss of feeling or numbness in the toes. Gradually, you begin to feel as though the toes are numb and painful, along with tingling, or other strange sensations. It’s as though the toes have been anaesthetised on the surface, yet just underneath it’s painful, or tingling. This set of feelings often spreads to the other areas of the foot or leg. To describe the feeling – it is similar to be walking on ice or snow with bare feet or sometimes as if your bare feet are walking across an electric force field. It is a weird feeling and very uncomfortable.  When you have severe nerve pain/ neuropathy it can feel as though you’re walking on bare bones. The problem is that the numbness can lead you to walk strangely, or lose your footing so that you fall. You feel as though you’re doing the right thing to make your feet move in the right direction but they do something else instead which is truly frustrating.Basically the wrong messages are being sent out and there’s a communication breakdown between the brain and the feet. So as this is happening to your feet, you may begin to feel like your legs are heavy, or like your muscles aren’t responding and becoming weaker. Climbing stairs can be both painful, tiring and frustrating and just plain walking can feel like a massive effort because you begin to constantly trip over what feels like air and just stumbling when you least expect it becomes a daily occurance. 

This is why I’ve ended up using a walking stick and more recently a 4 wheeler because of my muscular tiredness and to give me the feeling of more security with balance when i walk. Balance has become a major issue for me and sometimes I feel like I am walking like a demented alien.

As my neuropathy has worsened, I’ve developed it in my hands. I began lose control of my grip and I started dropping things which is totally frustrating. I’ve now lost use of my right arm and the effect this has on me is massive as I have a lack of self trust and confidence in my own daily actions leaving me frightened and confused as to what is happening to me.

I would say the hardest  thing for people to understand is the pain neuropathy can bring. It’s like nothing else ive ever experienced. It can range from mild tingling or burning, to pain that can leave me screaming like I am going to die AND especially at night. It can feel as though your affected areas are on fire and burning sensations are perhaps the commonest after tingling. Tingling sounds innocent enough but it can be so severe that it’s extremely painful and then i long for the numbness that i began with. I often get the feeling of a ‘electric shock’ in my legs and arms. Often the muscles will spasm, leading to twitches and spasms which together with the shocks, the burning and the tingling can lead me to actually cry. 

It has to be said, everybody’s neuropathy is unique to themselves, so the symptoms you see here can be anything from mild to severe. It’s little wonder that opiates can be the only course of action in the end but even they have their limitations, leading to increased doses and addiction. 

So I’ve let you know about all the sensations, you can experience and the strangest of feelings. Stepping on a stone may feel like treading on broken glass and hot bath water can feel cold leading to many cases of burns. People with neuropathy need to use an unaffected part of their body to test textures and temperatures, so we don’t hurt ourselves.

Other problems with neuropathy can be urinary problems and digestive malfunction. The nerves to blood vessels, intestines and bladder are damaged by the disease and give out faulty messages leading to abnormal behaviour in functions which we take for granted. In my circumstances, I can feel bloated after eating only a very small portion; and I can no longer empty my full bladder even though my brain thinks my bladder is empty. This has led to problems with constipation and diarrhoea. 
I Hope I have given you some idea of what it’s really like to live with nerve pain/neuropathy. It’s a horrible disease because it’s so unpredictable. I and many others live with only mild discomforts with only a little tingling & numbness here and there but then can suffer dreadfully in a instant needing to be on the harshest of medication to control the dreaded symptoms and it must be remembered that the medication only helps to manage symptoms it doesn’t cure them. So till a cure is found I and many others will just have to live with neuropathy as best as they can and find the best treatment available to help their own nerve problems. 

Let’s NOT tear each other down, it’s about walking together.

πŸ’‹

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 πŸ’‹

Once Upon A Chronic Illness……

Once upon a time I could do everything myself – but now with multi debilitating and degenerative health disorders affecting my body I now need to get help with certain daily tasks such as cleaning of my home & self as well as coming to help me live a life to love – which is another reason why I speak up about these dreadfully chronic illnesses. Today I give gratitude to the wonderful ladies who come and clean my home and help me with personal care as well as those that come to help me try an regain strength and normal movement in my arms & legs. πŸ™πŸ»