Regaining a life can, and does require carefully measured well placed steps.
Planned and also realistic in their expectations.
Goals.
Yes goals! Fantastic!
...but preceding these goals I need to achieve a level of understanding about where I am, how I got here and how I feel about it.
Insight! Wonderful!
It is so easy to see other people's patterns and tell them all about it. Recognising your own patterns, that to you is as automatic as breathing. That is hard stuff!
How I got here!
It is my life, my health, my job.
Initially I decided to just fix it!
My health was broken. Ok then let's fix it!
I became very tunnel visioned.
Researching, finding another doctor, investing everything in the impending appointment, and when they didn't have a solution, blame them, feel sorry for myself, then back to searching.
I have a growing number of research articles that I carry with me.
I swamp the doctors with information to validate my reason for seeing them. My right to be there. Before they even had a chance to hear why I was there I was desperately trying to validate my right to be there. Proving to them I know more than they do, preparing myself for the disappointment of another dead end.
During my most recent encounter with a doctor I went to my growing bag of documents and validation articles and handed it to the doctor as tears streamed.
I had to laugh when the first document she pulled from the bag was Stellabelle's
Un-crap your life.
I told her it was the most rigorous of all the studies in the bag, and went on to say that I should discard the rest of the medical articles, as a first step on the Un- Crapping programme.
It isn't a bad idea actually.
In truth, I have met many doctors and other health professionals who were very invalidating, misinformed , judgemental etc.
After decades of my symptoms being dismissed and finally having a diagnosis I imagined I would have an easier time within the medical system.
I haven't, and I have a chip on my shoulder about it.
I painted every doctor with the same brush. I told them they were crap and in the same breath begged them to fix me.
Because why? Under all of it I didn't feel deserving.
Often I feel tiny and insignificant when I speak to a doctor.
I need to own those feelings, and painfully reflect on why. Even as I write this now, I feel like I can relinquish part of a fight that I have carried within myself for a long time.
Fighting for a fix isn't working.
I had already decided it was my job and my responsibility to fix things and I failed .
I was stuck.
Stuck at a point where I despised myself for not being better.
Angry at my body for failing me, and even angrier at my mind for not being stronger / smarter / wilful enough to fix me.
So when I failed to think my way out of a genetic disease that no geneticist has managed to cure as yet, I manifested anger, resentment, sadness, frustration and self pity.
God forbid someone should asked how I am, If I was better? Or remarked that I looked improved. I wanted to scream at them. Sometimes I did.
I could hardly stand myself.
Correction - I CAN HARDLY STAND MYSELF!
The frustration and continual Crapola is eating away at me.
I felt I could do nothing to contain it.
So I shared it around.
The people around me wore it. A diminished intimate group, as chronic illness is not fertile ground for maintaining friendships.
So my family wore it.
I am going to change things in Australia for people with connective tissue disorders.
The available treatment and understanding is poor.
But first I need to change myself. My attitude and my current expectations.
I am on a mission now to Uncrap my life. There are elements of my health that can be treated, and I will get to that in time.
For now I am going to work on acceptance.
Of illness yes, but most importantly, of myself.
I was surprised to learn a few years back, when working with a psychologist that my personality traits clustered as a perfectionist.
It is true.
If I didn't come first then I shouldn't have tried and might as well have come last.
That is what I would tell myself.
I didn't have the same expectation of others. But they were not starting from way down here where I viewed myself.
In my mind if I didn't win then everyone would then realise the truth, that I was nothing worth while. The winning covered the poor self concept, accommodated a secret truth that I harboured about myself.
If I relinquish my title as The best then who would want me?
Even in this photo, marathon number 7 in as many days, I hated that my finishing time is visible because I didn't think it was fast enough. I was completely broken, had run 300kms, but still I hadn't done it well enough.
Step one in un-crapping my life.
Write down on a piece of paper, MY CURRENT CRAP TRAP IS...
Next step for me is to rediscover joy.
I have started listening to music rather than stare at the tv.
That simple change has shifted how I feel. Music is a powerful tool.
It motivates us and accesses emotions.
This track rolled around as I typed. I thought it a perfect one for today.
Thank you Tracey and thank you 
After some joyousness
It is time to formulate short and long term goals, and realistic strategies to implement change.
