Let Me Tell You About True Friendship……and connection 🙏🏻

Would it surprise you if I told you that the majority of people whom I count as my true friends in life are people I’ve never actually met?
Of course I do have healthy actual friends. People who have known me for a long while, and I know they will always be in my life one way or an other. Plus, there’s my husband, who’s my best friend. But, other than that, the people who I connect with are thousands, maybe even millions of miles away.
How can this be? Well, when living with chronic illness, it’s hard to find people who understand. I’m very lucky because those, that have stuck by me, in my life always try their best. They treat me with kindness and a lot of patience, and bring humor into my non humour life regularly. But it’s hard. It’s hard for them and it’s hard for me. Hard for them, because no matter what they will never know what it truly feels like to live in my skin and that’s something I’m very  happy about and I would never wish this on them.  Hard for me because I constantly wish I could help them more and do all the things I want when I want to do them. 
I am not even sure if you can imagine the life that I live. It can and is so very lonely and frustrating. Being and feeling so alone is one of the most challenging feelings that comes with living with  chronic and invisible illness. Because of those feelings, I began to look for support groups – some of my illnesses I did find groups, others practically nothing. A lot of the time, I am not well enough to go out and physically attend group get togethers so online and Facebook became my support mechanism .
I soon found several groups, and joined them all. I began, to find people like me! And early in my journey with chronic illness, these groups helped me to understand what my newly diagnosed health conditions were and why I was like I was. As I kept connecting I soon found some beautiful people that are true friends for life and although I may not be in those groups anymore for many different reasons, I’ve kept those friends and we have all helped each other wander our similar but oh so different journeys of life. Through this modern day world, I have also added to what I call my true friendship group a gathering of mostly women found again through predominantly Facebook . We have connected because of likeminded goals and visions but they all inspire me greatly to push through my illness struggles to be my truest self for the story, message , mission and purpose I have to share with the world!                                                             I am in fact been lucky enough to have been able to meet some of these most beautiful friends and just as I had I found online, they are just as beautiful in reality too which allows me to be further inspired and motivated everyday.  When, I had such a major fall with mental and physical health last year none of them disappeared where people I had lived and loved in the reality of everyday dropped me like hot cakes . That was hard to deal with and probably even contributed to worsening health complexities .                                                 Come forward, I am still struggling to come to terms with the complex list of health conditions that I have to live with things like – brain tumours, autoimmune conditions, anxiety, depression (that I never wanted to accept) but it was the latest of diagnosis’ that really dealt me my biggest blow – Functional Neurological Disorder – WTF is that ! It’s taken a number of months and a whole heap of hospital stays and appointments to really become familiar with this illness that disables my every being! Paralysis down my right side of my body, insomnia caused by what I can only refer to as jumping jack legs as soon as I lay down and many more symptoms that I’ve told you about in previous blogs. I fell so ill that my beloved wellness centre where I was a trained life coach and yoga and meditation teacher was waved goodbye! I had too, I couldn’t look after myself so!!                                                            I must say it was the most beautiful group of soul sista’s, that kept me going through the darkest of moments. This has brought me to right now, with rebuilding of me, my health and my life. I want to be an angel, a soul sista for other FND women, to show them that they are not alone. I began with this blog, which through each post is something of my wanderings looking for wellness. I then created other channels across the social media network, but then I remembered how my journey began finding true heartfelt friends it was from the Facebook group. I looked everywhere, for FND connections but nothing I could see. So I created my group, http://www.facebook.com/TheLongWalkWithFunctionalDisorder  for people like me, to come and connect and support each other on the good, bad, hard and everything else days. I want to create a caring space for each one of us to come when we need a friends ear of support. Isn’t this a space creation for where true friends are made and as we all join and connect, we may just become even more fierce in the world recognising our chronically invisible and debilitating illnesses so that we can all manage a better quality of life. This group, is my creation of wanting to let my other members (newest friends) know that someone is in their corner, no matter what?                                                  My group is only young, but it has begun and while I’ve never met these amazingly brave new friends, but I want them to know like all of my other soul sista’s and brothers,that they literally save me on my most darkest days. On really bad days and their are those , I feel I am in prison from my home but through chat and inspiring banter, I am pushed to step outside of my pain barrier to build more awareness through my story. Having a support network like this, allows life to be moved forward with energy for my vision and purpose. Through finding true connections where I can talk about my frustrations with those who understand makes the weary journey worth it.

If you are living with chronic illness and particularly FND, I urge you, to please find friends that understand you and your journey. Come and find me across on social media because I do not judge your journey, I only want to be there on those days and nights where you need to find someone to laugh with you because of the dire straits you find yourself in, and it’s OK because I am in them, too. In this modern day, nobody has to feel alone. Your friends are out there. They might just be in another state or country.

Come an connect and let’s wander towards mind and body wellness together;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram/fnd_goddess

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

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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 

💋

** 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”