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.

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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 weren’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 body’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 “they’ll be sorry,” or “I’ll show them.” 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 aren’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.

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Lisa-Raie

(AKA – The Barefoot Goddess) 💋

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

http://www.facebook.com/IAmFNDaware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Snapchat 👻- simply_lisaraie

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

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.

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;

http://www.facebook.com/IAmFNDaware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Snapchat 👻👻👻 simply_lisaraie

Much Love

Lisa-Raie (The Barefoot Goddess) 👣

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”

Breathing Through Chronic Illness With Meditation 🙏🏻

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.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Much love

LR – The Barefoot Goddess 💋

 

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

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.

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Much love

LR The barefoot goddess

💋

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.

💋

http://www.facebook.com/iamfndaware

http://www.twitter.com/FND_Goddess

http://www.instagram.com:fnd_goddess

SnapChat – simply_lisaraie