Life Outside The Back Door …… Stiff Person Syndrome xxx

Snuggled up in my jimjam…. sat on my white wicker rocking chair that used to belong to my mum …. , perched so close the entrance of my back door , that it makes me feel that I am almost a part of the life beyond the plinth separating my world from that of others …. pondering the thoughts whooshing around in my head, that seem to dictate my days … “how do I move forward … what’s my purpose in life”.

Feeling that my life is over shadowed by this disease is so dam hard. its been ten years since I first became sick …. eight years since diagnosis …. yet after all this time I am still struggling to accept that my life is not how I had planned it to be. However, only with acceptance can I move forward. Staying planted firm in denial creates distress, anarchy and pain within my soul.  Yes, the disease has left me with challenges and limitation ….but if I accept these, push though the barriers…. learn to be creative with the reality I have… then , and only then, will my heart be at peace, acceptance be given and life lived …. all be it with baby steps , taking one day at a time.

With my body and mind cocooned in the four walls of my home, life seems to be dancing by without me. My body cushioned from the harshness of physical strain and my brain buffered from the stimuli overload of the outside world. I have become so isolated, cut off and afraid of the world …. a recluse trapped inside my own head. This disease has left me living in my own twisted reality of constant fear , I’m so scared all the time. By rattling around in my mind alone, I am creating mayhem and destruction , reinforcing fear and diminishing any form of homeostasis. What I emotionally feel takes a toll on my body … its not healthy to live in a constant state of terror, loss, overwhelm, loneliness. Such feelings have a negative impact on my physical being. Then the loop continues …. my emotions create a war with my physical body …. my physical symptoms creating a war with my emotional state. So the ongoing internal battle continues . Until my being of existence is crushed, broken , hurting beyond words. The looping between physical and mental symptoms become so out of control that I am sat here silently screaming in my head ENOUGH!!!. I know I cant control my circumstances… I didn’t ask for this disease, I didn’t ask for it to set fire to my dreams, to swallow my future to feed the belly of the beast, to chip away at my spirit until it became dust … BUT I can control how I respond. I can make a choice to be a victim of my disease , or, I can choose to accept that I have a “ghost” which walks along beside me each day, fight like a warrior and create a calm beautiful reality full of  peace, love and passion for life.

I believe we all have a purpose …. I have a purpose . My circumstances do not define me. We all have a personal gift to contribute to the world …. each individual is so precious and sacred. Who I am , my purpose , and my attributes are important …. I have so much love in my heart to give its almost sad , as each day I remain cwtched behind the door from the life outside. I have been thinking a lot about this lately … my purpose and why I am here … how am I supposed to share my gifts and be part of this world when this disease keeps me cooped away. I know I have a beautiful purpose, we all do, I just have to tap into my creativity to find a way to “connect” with the world. I think the most detrimental thought for me is the belief, because I have this disease, I am not enough. I feel I had so much more to offer people, society, family and friends before this disease …. now I feel like I have been left like a broken toy on the shelf gathering dust. Each day when I look in the mirror, tears burning my eyes, reciting “I am enough” , must be one of the most difficult self love exercises I have done in a long time. Jezz , this is so hard to put into words. I find myself searching for the most basic of words to enable me to string a sentence together … my brain feels so fragile.

Being more forgiving and kinder to myself is a must. It is damaging and exhausting to my body where I am trying to fight to have the life of a person who has 100% health. Before I become sick I was very much a “people person” , I have a soft gentle heart full of compassion, and the thirst of desire to make a difference in peoples lives and to be the best person I can possibly be every single day of my life.  I just have to find a way with this disease in toe . Energy is infinite, I need to delegate it with care, precision and with purpose …. I get worn out so easily. At the moment it feels like the sunrises and it sets, yet I am still tucked behind the same four walls day after day. I need to find a way through this, I need to find a way to reach the life that is evolving outside my back door.

While sat her looking at the view, I see the garden over grown with Japanese knot weed , nothing can grow or survive in this garden right now, its chocking any sign of life trying to push its way up through. The ground needs to be treated for three years to kill off the knot weed to enable the earth to became a viable space again.20190514_164304  As I glace just above the wall at the bottom of the garden I am surrounded by life, trees mountains as far as the eye can see….. its so beautiful, its breath-taking . 20190514_153808-2Absorbing the contrast of both images, its like life. You choose to either stay in the wasteland that is dark, empty, lonely, and any sign of life is strangulated ….or …. you can choose to live where there is life , growth , light and peace. I don’t want to exist in the waste land anymore … I didn’t want to be forced there 10 years ago, but the disease has a cruel way of taking you there. I know I am not the only person who feels like this, who is struggling constantly afraid, trapped behind their four walls because they don’t know any other way to survive, how to cope or accept the impact this disease has on life.

Stiff Person Syndrome only has the power we choose to give it … if we allow it to steel our joy, happiness and those we love…. it will snatch it all in a blink of an eye. So choose life, ditch the negative and leave it in the waste land. Feed your mind with kindness, confidence  and love …. know that you are perfect just the way you are. I AM ENOUGH …. YOU ARE ENOUGH. Choose to be the amazing person god created you to be.

hugs , love and light xxx

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s