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

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;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

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

Much love 

TBG 💋

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“Oh But You Don’t Look Sick”…..

Lately, I have been looking back at the journey I’ve wandered and it’s sad to think that I’ve been chronically ill since 2012. Every single day, since then I’ve learnt so much about the ups and downs related to my hidden health conditions. I want you to know that these health conditions use what I would describe as a kind of lottery system, that give me highest of highs and the frightfully lowest of lows. Anyway, with that said, I sit here journaling for the benefit of all the sick and healthy people across the world. As I walk and talk my journey to more people with so many varied chronic illnesses, i see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person. I want to tell you, out in the big wide world how the phrase, “Oh but you don’t look sick” can seriously impact those people like myself, who suffer with invisible and chronic illnesses . It is time to look deeper into  what chronic pain and chronic illness looks like in the real world, so that they can receive the necessary medical care. 

As you are reading this, you may have just connected with me through social media, this blog or maybe you might be a good friend or family member. I just want to take an extra moment to talk to you about the phrase that I mentioned earlier “oh but you don’t look sick.” I want you to remember that as you are saying that to me, you have never seen me at home on the yukkiest and darkest days. So, at the moment that you are seeing me – you maybe right, I may not look sick or just because you can’t see my pain or illness, it doesn’t mean I am feeling at my weakest. Sometimes, dressing up helps mood, or even if it doesn’t help my pain, it helps to mask it. I’m so sorry if that messes up the idea of looking sick – but that is one indication of chronic and invisible illness.  I don’t mean to sound ungrateful for what you may mean as a compliment, but it is kind of insulting to me or anyone that is chronically ill. That little phrase dismisses the pain and suffering that I and so many go through on a day to day basis. So, if we have just met, and I open up to you about my painful neurological condition and I don’t even begin to mention my other autoimmune conditions that I live with, please don’t think you’re complimenting me. If you follow it up with but “you’re so strong ,” you are implying that being sick should make me weak. Maybe you think I’m exaggerating my pain because you perceive me as strong. When you are ill for such a long time, strength fades, but pain doesn’t.

This journaling and blogging session is not about only me, it’s about all of the incredible souls that I have connected with through support groups to keep me from giving up. By telling me that i don’t look sick and that I’m strong, BRAVE or beautiful you are reinforcing the idea that I don’t want these medical conditions taken seriously. Maybe I should not take any pride in my appearance, when I am on my sickest days so your conceptions of these illnesses and my illness will fit together. The thoughts of what being chronically ill looks like is what stops people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with respect. We are the people who even lose the much needed family support during their illnesses because their families do not understand or believe that being sick can look so many different ways. SICK LOOKS DIFFERENT FOR DIFFERENT PEOPLE ON DIFFERENT DAYS. 

You don’t see me at home. You don’t see me the way my close network do. The way I live is so horribly embarrassing that even some of my doctors don’t see all of the pain. The mask I apply is there, because of the negative experiences with showing vulnerability. Even the necessary doctors’ appointments and my God, there are many are excruciating hard because  it means that I have to take a shower with energy that I do not have. I let many of you see what I want you to see because to me it feels uncomfortable with showing you the truth. I don’t want to be ridiculed by the “oh but you don’t look sick” scenario each time I venture out.  So, if you see me outside of my home when I’m dressed up, don’t presume. Living a chronically invisible ill life is isolating and lonely and there are many days that I don’t have the energy to make myself look presentable. There appears a huge amount of stigma around when we the chronically ill can’t shower ourselves because we feel that sickly, but there is just as much judgement because you can’t see the whole story within a moments notice.  That’s why you only see me and most invisibly chronic ill people when we apparently don’t look sick. 

So,  I can’t explain my whole life’s chronically ill story across my blog or in a short conversation because without the endless health specialists notes and medical timelines,  I cannot tell you about the hours and money that have gone into tests and examinations that I’ve had done and then there is all the extra stuff that I have taken or done to maintain a manageable pain level. In conversations apart from now I won’t tell you how many doctor visits that I average a week or how many pills that I’ve tried and have had horrible side effects or allergic toxic reactions. I won’t tell you about the pain of when the doctors don’t know what to do with me – yes, I have been turned away by many doctors because I’m too complicated !!! I want you to understand the frustrations that I and so many deal with on any given day. Being chronically ill is like you are slowly losing your sanity and that’s what makes us feel even worse. So if I brush my hair to try and look ok when I leave the house, but I carry so much pain behind the pretty faced selfie don’t think that’s my everyday experience. I go out of my way to document the moments that I enjoy life, so when everyone else is out there having amazing and exciting life experiences and I am alone in my lounge room with my heated blanket I can see evidence of the few times life shined.
So, to end positively, I do appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don’t know you or you think that “but you don’t look sick” phrase you aren’t complimenting me – so it’s probably best to stay quiet, with my favourite saying “if you can’t say anything nice – don’t say anything at all”.

             Life NOW- 2016 & beyond!

** I want to tell you that it’s at this point along the journey looking for healing and wellness through endless doctors sessions and research that I am now, standing strong because of a doctor that saw me at my weakest and was not going to let me take my own life. I am currently undertaking weekly physical and psychological therapies in order to be strong and well. I have also returned to my vegan dietary choice to strengthen and alkalise my internal health. Through this therapy, my love for writing again came and why this blogging map is here for you but probably what’s happened is my love for mindfulness with meditation and yoga. I am stepping a new and revived pathway to trigger brain, body, health and life to commit to a life to love. This is me, this is my passion and purpose – this is life being authentic and vulnerable so if you see, me out and about don’t utter the words “oh but you don’t look sick”. I have a incredible long journey to go, but I am on a path for myself and so many others. Let’s walk together for life in brilliant colours!**

I hope you may have resonated with some part of this – if so make sure you connect and let me know;

SOCIAL MEDIA 

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
Lisa-Raie 💋

Wandering Towards Wellness, Globally”

Just Breathe….you are finding yourself ❤️


When we find ourselves, we can truly love ourselves and it’s then we can create ourselves ❤️️

Don’t worry if it’s painful and messy- creations are best found in these situations 🙏🏻
“Life is painful and messed up. It gets complicated at the worst of times, and sometimes you have no idea where to go or what to do. Lots of times people just let themselves get lost, dropping into a wide open, huge abyss. But that’s why we have to keep trying. We have to push through all that hurts us, work past all our memories that are haunting us. Sometimes the things that hurt us are the things that make us strongest. A life without experience, in my opinion, is no life at all. And that’s why I tell everyone that, even when it hurts, never stop yourself from living.”

Let’s connect on social media;

http://www.facebook.com/IAFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
Lisa-Raie

Wandering Towards Wellness, Globally “