“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.
** 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;
“Let’s Walk Together And Not Tear Each Other Down”