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Just How Do I Define Invisible Illness…….I Do It By #lightingtheflame 🔥

Published on July 6, 2017 by abarefootgoddessonajourneyLeave a comment

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;

http://www.facebook.com/TheBarefootGoddessAU

Much love to you all
TBG 💋

Part 2 – The Healing Journey With FND……..

Published on July 5, 2017 by abarefootgoddessonajourney3 Comments

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

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 💋

Once Upon A Time…..Living With A Body Filled With Invisible Illness.

Published on June 26, 2017 by abarefootgoddessonajourney1 Comment

Once Upon A Time……….

That is how all good fairytales begin right!!! But let me tell you all, this story aint no fairytale! This is my story of living filled with chronically invisible illnesses that many no little about….!!!

So let me begin……..

Once, I lived what seemed a normal life with normal dreams – I was living in the ‘burbs’ with my husband and five young children. My dreams were for health and happiness. I dreamt of us owning our own home, going on fantastic holidays and becoming a top financial accountant to help achieve the goals. For a time…..that was reality!

But, WOW – taking a trip back down memory lane, shows just how different life can turn out! That was over TWENTY YEARS ago, because gosh, I’ve been living a life filled with invisible illness for over 15 years NOW!!!!!

Invisible illness came to greet me through a journey that will be another story but as a taster I was introduced to lupus SLE, wegeners granulomatosis, ulcerative colitis, RA and run ins with a couple of different cancers. That journey found me, delving into many hospital visits and clinging to life numerous times…….

It was a battle……one continuous battle that had no end. With each fight, I would search for something new, some kind of healing magic that would allow all the pain, hurt and angst to be gone. The year 2015 came and the holistic modalities that I had been starting to use were beginning to help me – I was finding what is referred to as remission! I was able to open my own business – a holistic wellness centre helping others through coaching, teaching yoga and meditation. Life had a new set of goals and dreams…… The later part of that year, felt me tiring but I kept on pushing, Christmas 2015 came and went. The year 2016 delivered me an explosion that just went BANG! I wasn’t expecting it. I initially thought that it was just flares from the autoimmune and connective tissue illnesses…..but although doctors and specialists could see flares, previous medications and treatments were not helping these new symptoms. As more and more tests were done, I was growing more tired of all the pain and suffering. It was affecting my mood more and more as well…..to the extent that I began researching how to kill myself. I, of course kept this to myself just continuing to push myself knowing that something would show up in the medical tests. 2016…..April, May and June moved along….. my health was deteriorating with more and more strange symptoms that included balance issues and seizures…..but nothing could be determined by medical practitioners. July 2016, brought about a massive seizure leaving me unable to speak, a dropped face and paralysis down my right side. My husband wanted me to go to the hospital immediately…..but at this time, I was almost done with hospitals so I stayed at home. After a few days my face and speech did improve but I couldn’t walk…..the balance was as if I was on a tightrope and my walking gait was non existent. I went to hospital- immediately admitted! More tests over and over again! I had doctors and specialists surrounding me like flies on a hot day……but still no concrete reason! Late one afternoon, one particular specialist tipped me over the edge – as she left my hospital bed and ward, so did I with the real intention of COMMITTING SUICIDE!!!!
I didn’t make it out of those hospital doors because I fell and hurt my hip! I was helped back to my bed……and OH GAWD, if I thought I had doctors and specialists hovering aplenty before, now that I was on suicide watch – I was being hounded every minute but could they give me reasons for my seriously debilitating symptoms- the short answer was “NO”. They could only tell me that due to being chronically ill, I had depression but even though I was in a dark place that didn’t help me understand what was making my body behave in mysterious ways. Five days later after more and more tests, often ones that had been repeated and repeated my neurologist and her fellow walked up to my hospital bedside. They had worked out what these new symptoms were. Basically my internal software that allows communication between my brain and central nervous system had shut down……this they diagnosed as ‘functional neurological disorder’. I immediately had a million and one questions, almost all that they could not answer. With that diagnosis, I was allowed home…..discharged with a lot of referrals and a website to help me understand what this thing called FND was all about……

Awaiting my referrals being picked up, I spoke to my local GP, he was almost as much in the dark about what this neurological illness was as I was…..so we went on a journey of awakening together. What we deciphered was that FND is an umbrella term for a variety of neurological symptoms which current medical diagnosis models struggle to explain psychologically or organically. Patient presentation can be so very similar to a whole range of other neurological conditions. The symptoms of FND can be as debilitating as MS and Parkinson’s disease as there are many similar symptoms. It left me wondering if I was ever going to get the help I needed…..but at least there was hope coming through my doors again.

Soon, enough referrals came flooding in. Home care and the most important NeuroPhysio and OT. These referrals were music to my ears as I was learning almost everyday that due to FND being very new to the medical research fields there were not many effective treatment plans in existence. I began initially home based physio, in which I was given a walker. When NeuroPhysio began, I was very lucky to get a physiotherapist that had knowledge of FND and she quickly created a plan filled with physical therapies that would be most effective in bringing forward goals for reintroducing proper functional movement and motor control helping to retrain my brains pathways. She was able to work closely with my OT to help me dramatically improve functions that I thought were lost forever.

I have improved in many ways very quickly, HOWEVER I do still have a long way to go in the big scheme of life. I am continuing all the physical treatments as well as speaking regularly with psychologists and counsellors that are helping me to release so much allowing profound healing to begin. But it’s hard work, and it is the lack of understanding of FND and other invisible conditions that negatively influences treatments and care. Researchers, money, and volunteers are greatly needed to help illnesses like these that have greatly impacted and impaired my life and many others. This is why I now walk and talk openly, sharing my story and experiences in hope that I may shine a light for others to begin sharing their stories and experiences and together we can light a flame where that most needed research, information and funding will be found…..and most of all stigma can be silenced.

I hope that by telling my nightmare of falling through a dark hole of invisible hell, I may have helped you. This is one part of the hell that brought me to my message and mission of teaching and preaching to the world about learning more about invisible illness. I will not stop and I would love you all to help me. One way is to like and share this post, but you can also join me on my social media channels;

where we can all join as one by #lightingtheflame for invisible and mental illness.

Much love

TBG 💋

As the rambles continue…..

Published on February 5, 2017 by abarefootgoddessonajourneyLeave a comment

You know those days & even when you live a clean and free life , you will have them……don’t squash them in – let them out…… rant them, cry them, scream them……

Shadows that scream when I’m alone EVEN when I’m not alone….ahhhh yes it’s just that I’ve got a migraine! It’s the internal war that rages behind my face and above my throat!My pain will be up, down, and sideways!

BUT let it be said what the headache represents is me defending in suspense!

It’s me suspended in a defenseless test!

Being tested by a ruthless universe examiner !

One moment of weakness , doesn’t mean you’ve failed, it doesn’t mean you’ve been defeated- it’s you stopping to rest, stopping to restore! Let that headache, that migraine heal and tomorrow you will be strong again! You will stand and you will conquer!

#iamthebarefootgoddess , if you resonate please like and share my blogs as by sharing our stories we raise awareness and inspire each other . Also remember to join me on my social media channels;

#migraines #ajourneyintime #testingme #teachingme #breatheingoddess #kundalinirising #kundalinihealing #iwalkandiwander #Findingpeace #findingme #beingme #joinmeonthisjourney
“Wandering Towards Wellness,Globally”

Happy New Year – Welcome To Life, Awakened & Aligned….🙏🏻

Published on December 31, 2016 by abarefootgoddessonajourney2 Comments

Today, 1,1,2017 begins a whole new step into my truest and highest selves life path!2016, was turbulent, but through the bumps and bruises, it brought openings in myself that I had attempting for years! But the door opened and I stepped in, taking WHAT was mine. Through doing so, I’ve been able to release , off load and let go of stuff that had been stuffed and packed into the deepest most insular cells within me. But they are gone and I am now free, in pure nakedness to express myself as I need to. Another reason for my name change, I’m not the little girl “Lisa-Raie” that was born to this world and forced into being what I am NOT! I am the bliss through the storms , I am a creative because of the energy sent from Mother Earth’s universal platform.

By awakening and aligning fully, I have gained the true shakti energy that my yoga and meditation training had taught me back in days gone by!

When you receive the shakti energy , you come alive, you are luminous and you are desirable!

Having the shakti within allows the essence of vibrant health, feeling good in your own skin and feeling that your life has meaning and value. This is why, I know from today I have the ability to transform the understanding of what invisible health complexities are and I can set real change to making better and more improved treatments available for all that require them. When you have the energy of shakti you have the energy to engage with life in more meaningful ways. The shakti energy empowers you to seek growth and change and to find purpose and fulfilment in everyday life. Shakti is the foundation for a conscious life. When Shakti is directed inwards it empowers you to raise your consciousness, to experience yourself as part of something greater. Ultimately, Shakti is the fuel that powers your spiritual growth and the awakening of consciousness not just in me but in others too.

Since awakening and aligning to my highest self I know what it is like to feel alive and well within my body, mind and spirit and it is why I know my true healing has begun.

I am the barefoot goddess – Harmoni Shakti 💋

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

That’s The Thing About Pain….It Demands To Be Felt 🙏🏻

Published on November 28, 2016 by abarefootgoddessonajourney5 Comments

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, “the 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.instagram.com/fnd_goddess
Let’s walk together for our health

Lisa-Raie 💋
“Wandering Towards Wellness, Globally”

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

Published on October 13, 2016 by abarefootgoddessonajourneyLeave a comment

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.

Breathing Through Chronic Illness With Meditation 🙏🏻

Published on October 3, 2016October 3, 2016 by abarefootgoddessonajourneyLeave a comment

If you are like me, I don’t have to tell you that living with chronic illness can be at times unbearable. I know I do everything I can to get through days and nights – I try moving but that hurts, I rest but that hurts, so I do nothing but that hurts more! So by the end of each day, I’ve taken the maximum dose of painkillers that I could but the ache is overwhelming and consuming every breath. It’s a vicious circle that rotates endlessly.
But, as I’m having to deal with the chronic pain and endless number of physical symptoms that hurt – it’s also my mind that is also hurting . Questions, questions, many questions consistently overload my brain with such things of being unable to deal and cope with the ongoing pain and illness and all I’m asking is that I just want it to stop – I JUST WANT IT TO ALL GO AWAY – but it doesn’t!
This has been my constant thoughts and feelings over many years but I find of recent weeks it’s back with a vengeance! Pain insomnia wreaks havoc on living, so the only thing that I can do is to fight back against these moments of excessive chronic pain and illness so that I don’t fall back into a spiralling doom of despair.
Last night, I switched off from social media and connected back into a mindful space with meditation. A number of years ago, I found yoga and meditation and I found that it reduced my chronic pain and illness immensely and I was able to learn the principles and I began actually teaching it. However, as I stepped up the energy levels, my chronic illnesses stopped me in my tracks again. I could no longer do or teach yoga because of paralysis and weakness and so meditation fell by the wayside too. Being in a zone with insomnia for over a fortnight, has lead me to think about ways of not falling backwards-the breath of mindfulness has come back. I know very well that this mindful action soothes my mental and physical angst. I have no idea if I can bring myself back to being able to no longer feel pain with the intensity that I am, but if I bring back my focus to the breath just possibly I can help untangle the thick fog that insomnia lands me in.

So back to meditation i go. What meditation does is focus on different parts of my body simply using my breath. It allows me to see my mind and body in action and to feel the pain sensations as they rise within my body and then let go of them using calming deep breaths. I did not think I would have success straight away, but I was amazed by the difference. Last night, has been my best night for about a fortnight. You see, just by bringing my calming breath back into play my chronic pain insomnia and intolerable nerve pain and twitches began to melt and I was able to rest and was able to sleep – YES SLEEP.

I know my pain arises from my multiple chronic illnesses and the damage to my bodies nervous system and what is like a speaker in my brain leading the intensity of mind and body suffering. From studying different forms of mindfulness and from my personal health experiences, I’ve learnt that my mind does not simply feel pain, it also processes all the information that it holds. Its like my mind, zooms in on my pain looking for away to take it away but instead what my mind is doing is causing my pain and or hurting to be louder. Before long I’m in periods of excessive pain and illness and insomnia is causing me more hurting. I know, if I don’t do something I will end up being consumed again by my excessive anxieties, stresses and worries as well as my physical pain. As I spoke earlier about in an instant the vicious circle of downward spiralling is with me again, which hurts and impairs my healing process and leads to even more hurting.

So it is time to again, step into handling my pain and hurting differently to how I currently am. I need to lay my hands open to the powerful effect of mindfulness so that I can better control my pain. I know personally when focused, that mindfulness does turn my volume control down on pain. It also lessens my anxiety, stress and the depression that it has brought me. Using mindfulness, my mind and body can again truly relax and perhaps in conjunction with my medication and other problems which include my memory loss may improve as well as my mental and physical energy. As I’m writing this I’m wondering – WHY THE HELL, DID I GIVE UP MY MEDITATION!

So come forward – I’ve found a wonderful app called “InsightTimer” – you may want to have a look at http://www.insighttimer.com . This app, has over 2000 different meditations- I regularly search the different rest, relaxation and sleep meditations and I’ve again found that stepping into following the guided sessions I can use mindful activity as a powerful painkiller in conjunction with my other medications to assist my steps walking forward.
If you would like to give meditation a go, I would suggest looking for the app I spoke of but also practising getting your mind and body to relax. This is an activity I use and its best practiced in a quiet area. Don’t worry if your mind wanders. Mine does, so don’t get mad with yourself. When it happens, just bring the awareness back to your breath and concentrate on the part of the body where your mind wandered. As you focus on each part of the body, listen to how your body is feeling.

So let’s begin the practise;

I will generally Lie on the floor, my bed or my sofa, letting my legs lay relaxed and slightly apart. I place my hands on my tummy (presently I have a paralysed right arm so I place that hand under my left, so it stays in place. I will close my eyes and sink myself into the floor. Next I focus on my breath – listening and feeling as it flows in and out of my body. I will just lay still noticing how my breath is, feeling the rhythm of each breath in and out with as much detail as i can – doing this allows me to really connect inward. I will start at my toes and work up – spending a few minutes with each area of my body feeling how it feels in temperature and with pain. As you breathe in, hold your breath and then slowly exhale in each breath, I use the count of 4 and then again to the count of 4, I exhale. I will often spend more time on particular areas of my body that are feeling worse pain. Once I’ve listened I will move my awareness to the next area of my body. I will stop and observe what i find for a minute. So basically it’s about breathing deeply in, holding your breath and then exhaling observing from your toes up all the way to the top of my head. Once I’ve reached my head I will spend a couple of minutes observing my whole body breathing as one. Slowly I will open my eyes and bring myself back to my surroundings. What I find, is that there is a calmness across my body, I may still have pain but my body is in a state of awareness that allows me to either continue with my day or settle into a restful space for night.

I hope that this post has been of help for you, if you’ve been thinking of trying to incorporate mindfulness and meditation into your life and chronic illness journey. If it resonates with you or perhaps you want to know more about my journey, please don’t hesitate to connect with me here or across on my social media channels.

http://www.instagram.com/fnd_goddess

Much love

LR – The Barefoot Goddess 💋

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

Published on October 2, 2016 by abarefootgoddessonajourneyLeave a comment

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.