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 💋

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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 💋

Nobody Sees…..

Nobody sees me, nobody at all.

Nobody sees me at 3am when I should be asleep but the pain from the tip of my head to my toes is filled with pain.
Nobody sees me, nobody at all.

Nobody sees me,

trip and stumble

Nobody sees me,

put the TV remote control in the freezer

Nobody sees me,

put the house keys in peculiar places

again
and again.

Nobody sees 
when your so tired, that you can’t even take your bra off each night,

Nobody sees

when you are still in the same clothes, 3 – 5 days in a row….

It is such a glamorous life

being chronically & invisibly ill!
Nobody sees you

trying to stay calm…..CALM what the fuck is that,

when you are chronically and invisibly ill!

Nobody sees you
when you fix lunches or dinner

because you said, you were OK

AGAIN and again 

and again, EVERYDAY!

Nobody sees you

sitting over the sick bucket in the middle of the night

Nobody sees

your inner self  kicking, swearing and shouting,

trying desperately to hold it together
NO, nobody sees you

holding on, like you are a trapeze artist on a tightrope of chaos.

Nobody sees you 

getting up
and sitting down

then getting back up 

then falling to the floor

Nobody ever sees you when the days are so dark and gloomy!
No, nobody ever sees that you just didn’t leave the house for one whole week.
NO – Nobody FUCKING saw that !

Oh what a glamorous life,

to be chronically and invisibly ill!

Nobody sees

when you were so empty

but you still gave something

or  made something

and continually saying sorry for being cross, again and again!

NO nobody sees that real YOU!

Nobody sees all of the things that you do, or the ways that you manage, when REALLY you can’t manage at all!!!

and then there are those questions,

“you don’t look sick”

‘when are you going to go back to work?’

I can tell you, 

living with chronically and invisible illnesses 

are jobs in themselves 

and they are seriously one of the hardest jobs anyone can ever have to face

because you are simply reduced to sitting around at home
and nobody sees you , nobody sees that
But through all the torture 

there is something you are building 

sonething that  will never be torn down

– THAT SOMETHING IS INNER STRENGTH 

So remember 
When nobody saw how much you gave

every day

every night

every morning 

every afternoon 

and every moment.

Well let me tell you , I saw you and I felt you, 
 I think you are so wonderful , so BRAVE 

STAY STRONG because just because there are BAD days, it doesn’t mean it’s going to be a BAD life!

If you are chronically and invisibly ill and you resonate with this please like and share and if you haven’t connected please do so on my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

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

What is NeuroPhysio….Treatment Is Available. 

Since I’ve been posting about beginning my rehab sessions-I’ve lost count at how many people have messaged me to ask what is this “NeuroPhysio” that you are doing!

Let me explain;

Neurological physiotherapy is a treatment for people who have neurological impairments. It is an exciting area of rehabilitation that merges key discoveries in neuroscience, exercise and movement science. People, just like me with neurological or neuromuscular disorders can present with a number of difficulties with movement issues or challenges that can influence balance, walking, arm & hand function, posture and pain. This form of treatment can help people with dizziness and balance disorders, and those people at risk of falls and I am one of this group of people that this form of rehabilitation is helping. 


This treatment brings in the evolution of Dr. Norman Doidge who introduced neuroplasticity to the world, through his book ‘The Brain That Changes Itself’ a number of years ago. His idea was that our brains are not as rigidly hardwired as once believed, and with therapy, they can change by being rewired. I read this book sceptically positive about this doctors ideas but indeed what i am finding in my own rehab is that the brain can heal, it can change and it can rewire and be triggered to find new circuits and paths through mental and physical activity. Indeed our brains can “…form, unform, and reform in new ways”. 


Beginning NeuroPhysio sessions, I’ve stepped into rehabilitation with positivity  that it will assist me to regain control over areas of my body that have become blocked from functioning normal in my daily life. What I’ve found is that the exercises and techniques that I am having to learn or perhaps relearn are at times exceptionally frustrating. They are exercises, set on teaching the particular parts of the body which have become blocked in their normal functioning behaviours. My particular areas are teaching the right side of my body to again function. The areas worked on are my right leg and foot, which presently due to paralysis are frozen and walking is strained, thus I am needing to use a four wheeler walker to assist with balance and gait structure. My right arm and hand is also worked on, helping to trigger messages to my muscles so that I can again do such things as brush my hair, butter bread, etc. But, I have this inbuilt strength that tells me after being ill for so long that I can’t give up! I’ve managed to come a long way in such a short time and although, the day after each session and if I’ve had a exceptionally full rehab session it may be two days where all my body can do is rest, all it can do is sleep and recover. But, I won’t stop because I know that I can trigger my brain to rework its processes of messaging my body. I will recover,perhaps not in the way that I would like , but these therapies will allow me to put in place new pathways to live the life I love.

                         
I hope, I’ve deciphered the mysteries of ‘NeuroPhysio’ .

If you have found my blog helpful, please like and share and I would also love to connect with you on my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

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

Depression & Chronic Illness, Deconstruct Your Every Breath…..

Tonight I write in a dark place……

The last week, I’ve noticed both mind and body sliding- is it because of all the therapies I’ve begun- is it a virus or an infection that has gotten hold of my immune system! No matter what it is life seems so unworthy of and for me right now! Things literally have me thinking that I have no resources for helping myself or anyone else. So why the fuck am I wandering this path for awareness for Functional Neurological Disorder & the many other chronic illnesses- well these circumstances are why!!

I know very well now, that surviving the depression that my health takes me into is so very scary. I also know that when these dark thoughts start reappearing it’s the red warning light flickering that I need to take even better care of myself. You see, depression and chronic illness deconstructs my every breath bringing the reappearance of the big scraggy black dog waltzing back through the door. This frightens the hell out of me and that’s something, even the most beautiful people around me doing all they can will never understand- christ I don’t even know why this, health roller coaster and its dog friend does this either.

In this last week I’ve completely lost my way, including an appetite for food and life,  so I thought if I jumped back into my strict juicefasting and meditation regime I could regather my energy and thoughts. But, alas no, I’ve become even more lethargic and exhausted – I have aches and pains like the worst autoimmune flare that ever there was! I don’t want to go to my many appointments and therapies – I just want it all to stop! I am done adulting!
So with those thoughts, I come back to today and it has felt like I literally can’t keep doing this any longer BUT oh I do!  What the fuck – I am full of contradictions tonight- I don’t want to live BUT, yet I want to live and fill my life with the visions, dreams and passions that fill me with hope and take the dark away. So, this is why I ramble tonight because I know I have some ability in reaching out into the world through blog , letting you, the one that is struggling too know,  it’s not just you that feels this destructive pull! Together through my scrambled thoughts and feelings of pain and sadness, hope and healing there is a future-if we can just see through the mist and messyness that life sits us in right now!

So, as I mentioned as this last week has moved forward- I’ve noticed my appetite disappearing, well to be perfect honest, I don’t have a big one anyway so to lose interest altogether- I know is wrong! WHY – because i know that i need food for energy and if I have no energy i can’t feel okay. I’m not saying that increasing my diet is going to fix these problems I am feeling but across my wandered journey I know that good healthy nutrition, helps more than everyone realises. I’ve learnt something about living with debilitating illnesses that affect my ability to eat and that is when I have a sustained and healthier appetite with clean nutrition it allows for a better and brighter ‘ME’ and if that’s the case I can function better which means just perhaps my mind and body will be able to recover from its functional flaws that I battle with at present.

Journaling tonight, right now seems cathartic, however I feel still so discouraged with this dark space that I have again landed in! I can’t believe what my physical health has done to my mental health and viceversa. I know I’m just scrambling at this point because it’s a matter of holding myself together.

Falling into depression and such darkness is my most difficult path with living with multiple chronic illnesses all of the time. I’m so tired of it. It is what makes me lose hope, but then I hear my medical specialists words whispering “there is time for everything YOU want life to be – it maybe different from the original vision, but life is still there for you to live”. With, these whispers, I just need to hold on. 

I dont know you, yes YOU, that is reading this or maybe I do BUT I know I definitely don’t know your individual struggles. I know we all have them at some point and if you are reading my struggles tonight, then I believe there’s hope and a reason I both put pen to paper and then to blog. This message is for me, but it’s for you too – Just surviving until tomorrow is  enough. Then, when tomorrow rises, let us then look at that day. What is important is that we stay alive and keep fighting for something better – something much better than this.I know it  won’t get any better if i give up. Suicide is not an option. If you have suicidal thoughts creeping into your mind, it is those even bigger flickering red warning lights telling yourself to be nicer to you in every way you can and I know because I’ve been in that place and that’s what scares me with this darkness that I sit in now. 

As I ponder for a moment, I realise that the words written are my ways, for again talking my  way through the mess and mist, whilst reaching for support. Let me reach for a  glass of water and take care of myself physically and the mental part will follow. I hope wherever you are and if you’ve resonated with this – you too will be able to reach for a glass of water and look after yourself tonight too and together we will get through this. 

Much Love

Lisa-Raie 💋
You can connect with me through;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

“Wandering Towards Wellness Globally”

My Brain & Body Are Affected By Chronic Stress and Illness….So Much More Than I Knew.

After meeting with my neurologist yesterday afternoon and having discussions about my chronic health conditions, she began to talk about chronic stress and what it does to both body and brain. As a woman living everyday with “Functional Neurological Disorder “and other invisible illnesses, knowing that battling various obstacles from both brain and body not working, this subject has really left me, wanting to learn so much more . As my neurologist spoke, I could feel that my knowledge regarding chronic stress was about to go to new levels.  I new that chronic stress increased the stress hormone cortisol but I really didn’t have any ideas that the affects on our brain functions was so extreme, putting us at risk from many mental and physical illnesses.

BUT, STOP RIGHT THERE – STRESS IS VERY MUCH A PART OF MODERN LIFE!

What, I’ve discovered is that there are two kinds of main stress . These are acute stress and chronic stress and not all stress is bad for you. Acute stress is the cause to an immediate threat or action and is more commonly known as the ‘fight or flight’ response. When you are in a pattern of acute stress once the threat has passed, your levels of stress hormones return to normal with no permanent effects. It is actually thought that some level of acute stress is even thought to be good as it assists your brain reach peak performance. However chronic stress, which is the kind of stress that most of us face on any given day is the stress that can cause severe health concerns. Having a ever rising level of stress hormones not only makes our bodies sick and it negatively impacts the brain too. This is what struck the fear chord within me, as when stress becomes chronic, it changes the brain’s function and even its structure down to the level of our DNA. 

So what is so dangerous about the stress hormone, cortisol. So I needed to find out about these stress hormones that we have within our bodies. Firstly we have adrenalin which is the stress hormone we make in moments of excitement and is what makes us work or perform even better than we would normally have. Adrenalin assists us and it also does not stay in the body, disappearing as quickly as it was produced . Cortisol, as spoken about earlier and on the other hand, moves through our bodies all day long, making it so very dangerous. Cortisol is the number one enemy for everyone and can lead to many adverse health conditions such as digestive problems, autoimmune illnesses and cancer, just to name a few.

CHRONIC STRESS TAKES A MAJOR TOLL ON ADRENAL GLANDS.

Chronic stress can leave you feeling exhausted, it can cause weight gain, mood swings, poor sleep, short attention span, and memory issues just to name a few of the common signs of a elevated cortisol level . So this demonstrates just how stress and cortisol can take a toll on our bodies but these symptoms can and do also take an equally high toll on our brains. Some of the brain related stress symptoms are obvious when pointed out , these can include memory problems, anxiety, and worry. The horrible thing is though that most of these symptoms of stress on our brains are not noticeable until they get much worse, affecting parts of our bodies. Making diagnoses very difficult. Here are some key issues that causes stress to impact both brain mental health and physical well being. I’ve learnt that chronic stress creates free radicals that destroy our brain cells. Free radicals attack brain cells causing them damage and death as they basically break our brain cell walls causing them to rupture. Losing sleep, eating junk food, drinking too much alcohol, or smoking cigarettes all add to our free radical overload. Chronic stress can make us extremely forgetful. The sign of memory problems can often be one of the first signs of stress you will notice as you misplace commonly used items or forget usual appointments. Chronic stress can create a most vicious circle of fear and anxiety. You see stress builds up in an area of our brain referred to the fear centre. This makes us more scared, causing even more fear and stress and again stops the production of new brain cells. Chronic stress can lower critical brain chemical levels causing depression. The reduced levels of  serotonin and dopamine can leave you depressed and more prone to multiple health complexities. Serotonin is namely the “happy chemical . It plays a major role in mood, learning and sleep. Women low in serotonin are prone to anxiety and depression, while men are more prone to alcoholism and ADHD. Dopamine on the other hand is named as the “motivation chemical”and is in charge of your pleasure system. Low levels of dopamine can leave you not focused, lethargic, and again depressed. People low in dopamine may often use caffeine, sugar, alcohol, and illicit drugs to boost dopamine levels. Looking at STRESS so much more closely it is so visible that it puts us all at greater risk of various mental health conditions. The cause of most mental health illnesses is not yet understood and personally I wonder if the true answers will ever be found because the causes are a complex variety of factors. A lot more research is needed, but it has been discovered that physical differences in the brains of people with stress disorders.

From looking at stress this way, I can see why it makes me personally feel chronically stupid at times. In my particular journey with stress, my brain appears to seize up randomly and with no rhyme or reason. Stress impairs memory and at times impacts making decisions very difficult. I had heard, that chronic stress can shrink the brain. Well, yes STRESS can measurably shrink your brain and my neurologist did explain this very clearly. It was described to me that the dangerous levels of cortisol can destroy and shrink, the part of your brain that stores memories. This sector of our brain is critical for learning, memory and emotional responses and when we are chronically stressed, toxins enter our brain, however the brain is highly sensitive to toxins of every kind. When stressed our brains safety barrier becomes thinner, thus letting such things as heavy metals, chemicals, and other harsh toxins. All of this putting us more at risk of a multitude of worrying illnesses and diseases and it also contributes to brain inflammation and depression. I was amazed to learn that our brains have their own individual immune systems. This internal immune system protects our brain and spinal cord from infections and toxins. All of this new and thorough understanding of what chronic stress does, has given me more insight to why happiness and peace of mind is destroyed so very deeply. It wears us down mentally, emotionally and saps the joy from life physically and it is any wonder, finding a way out of such darkness takes enormous strength when such symptoms of stress include;

  • excessive worry and fear
  • anger and frustration
  • impatience with self and othersmood swings, crying spells and / or suicidal thoughts
  • insomnia
  • trouble with concentration 
  • forgetfulness, mental confusion
  • difficulty in making decisions
  • feeling overwhelmed

I now know why when I walked out of the neurologists room, I felt a inner request for further information of what is gurgling away within my own chronic illness journey. I sat and cried, I have to admit because, I know now why it is so difficult for the modern world in which we live to understand stress and the illnesses that are caused by it. But, having a more subtle insight to how chronic stress becomes allows me to better understand my own healing journey towards reducing my stress levels and repairing and rebuilding both body and brain to my desired lifestyle. 

I have wandered far and wide, looking for tips and tricks over the years to overcome stress throughout my wandering steps. Going forward, I will be definitely going to be more proactive in using these particular steps to help my own body overcome the harmful effects that have had on my brain. I will be going back to my vegan diet, eating foods high in antioxidants such as fruit, vegetables and green tea. This will assist in stopping further free radical damage.

Increasing mindfulness back into my daily practice will become so very important to boost levels of food energy into the brain. My journey with debilitating illnesses has left me disabled mentally and physically, so rebuilding can’t be strenuous. I am undertaking NeuroPhysio sessions based on pilates and I now know this is particularly important. As I gain more confidence and strength again, I  will be able to walk more steadily.  I also now have the belief to again use yoga and meditation exercises to heal my mind and body. Using a daily meditation practice reduces stress. Yoga and meditation are alternative tools for being able to master and strengthen our thoughts because as we know stress does not just come from our  life events, it also comes from our inner most thoughts and  negative reactions with regard to these events.

I know, learning more about, how chronic stress effects body and brain has helped me and I also hope that has given you better information of how it is an unavoidable part of our lives. But I certainly have learnt that proactive and positive steps, can definitely reduce the wear and tear on bodies and brain. I will be definitely incorporating a more mind/body selfcare program again to ensure I can manage all aspects of my life so much better because my brain health is just as important or more as my physical health.

Please let me know your thoughts by leaving feedback here or on one of my social media channels;

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http://www.instagram.com/fnd_goddess

Snapchat 👻 – simply_lisaraie 

“Wandering Towards A Life Of Wellness”

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.

​​
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.

​​

Lisa-Raie

(AKA – The Barefoot Goddess) 💋

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