Tag Archives: motor neuron disease

My every breath


My every breath…..

feels claustrophobic

is a struggle

is like an elephant sitting on my chest

is lost in solitary confinement

is like breathing solely through a straw

is like running a perpetual marathon

is strangled by my absent functioning muscle

is like breathing in and out through a balloon

is stolen by windy days

is consciously controlled tirelessly

is my minds sole focus– in, out, in, out……

is my conscious intention…second by second, minute by minute

leaves no fog on windows…no message left

scares me! is it my last?


is savoured

is survival

is an essence of life

is a blessing

shares my story/journey

tells you to live in the moment…each breath

tells you not to take it for granted

is my expression of who I am

affirms I am still supposed to be here



15 May 2016


oxygenniv (2)


How one run changed my life – part 2


This is a continuation from part 1 of exploring how my life has dramatically changed but also what I have had to face about myself and learn.

One of the most interesting lessons I have learned is about body image and self worth. I have always had self worth issues and earth has been such a big school by providing me with events that have challenged me to find strength as a woman. There are a few memories of mine that initially stand out such as my first ever relationship at 19 where I suffered 5 years of emotional abuse which caused severe panic attacks and to the point of suicide, workplace bullying,  to times as a little girl where after a kidney operation a boy at school randomly punched me in the kidney, or when my sister and I walked across the school oval and two senior males intimidated us and put rubbish down our clothes. I never had a good relationship with my body, in fact when ever I felt hurt by something externally I wanted to punish myself for it. These days that is called self harm.

I am bringing this all up because I want you to see that what we experience in the outside environment, and what we feel, can eventually reflect in our body too. Not surprising that I have a condition whereby my body attacks it’s own tissue in every cell of my body.

Before I became ill, I was the fittest and happiest in my body, but you see that was all still too superficial because I had not dealt with the emotional scars that were there. We seek so much outside of ourselves when what we really we need to do is search within. When I went to Brazil on my spiritual trip, we all got pedicures one afternoon as a treat and bonding experience. This was extremely emotional for me and I was very uncomfortable with it. I had so much grief in relation to my body and I didn’t love it. Having someone touch my paralysed feet, and withered legs, and showing them love, reduced me to tears.

The thing is, I cannot control my body anymore, and I had to move to a point of acceptance – let go of the shame, feeling ugly, frustrated or sad. This is my body, but I am not my body.  I am slowly learning to love parts of my body, that I didn’t like when I was well. This body has changed so much it is not so recognizable to me anymore, but I have to make the best of my relationship with it. I entered this life in this vehicle, this body, and at the end of my life I will be leaving it.

This is me now, 58kg (from 70kg illness has eaten away at the body), I have no balance and cannot stand unaided, no muscle strength, and in this picture I am in pain  after a bad fall (I have fallen over 100 times at a guess), but I have and honour who I am and choose to smile regardless – because it’s hitting home more and more these days that I am not my body.  And I am learning more about who I really am and why I am here and that I am valued, beautiful and worthy and you would never treat your best friend the way we do to ourselves sometimes!


Here is a really good article called MIRROR MIRROR – 5 Relational Skills to Heal Body Image that I recommend reading if you are struggling with self destructive thoughts about your body.

Advice from your body

  • Realise that this is your body, but you are not your body
  • Listen to the pains, or changes, and don’t leave it too late to seek medical help
  • Be conscious of your emotions and how that affects your body
  • Focus on your positive attributes
  • Adorn your body in your own unique way – it really is your temple, your abode
  • What you put into your body – from environment, to food, water and thoughts, affects your well being now and in the long run
  • Do not take the body for granted, do not push it too hard, slow down
  • Do  not punish the body for things you feel emotionally
  • Balance activity with good rest and sleep
  • Connect with nature, stand on the earth barefoot
  • Breathe properly
  • Love the body you are in, you are uniquely beautiful