Resilience diary - pain today: 6/10. Photo: "Śṯâġèş" The only pain i had in my teens was in my knees and occasionally my calves. I was pretty used to the swings in intensity and adapted my activities to suit my desire. I couldn't explain what i was doing to people as i barely understood it myself but i did things like at work taking jobs that required less walking, customer service meant running back and forth across the deli floor all day whereas I became really fast And clean with the meat slicers that i would be able to jump on them a few times an hour. On Saturdays i'd handle the stock delivery for similar reasons. My career from then basically followed my physical limits and still do. I didn't know then that my whole body would eventually be in constant pain and so young but we keep trying. The hardest part is the mental game, the loneliness and in recent years the cancellations and lack of commitment as i try and manage the myriad of issues from head to toe. Is exhausting and i prefer to be looking at mountains #project117 #chronicpain #stages #updown lo

Resilience diary - pain today: 5/10. Photo: "Ħøçüś Pøçüș" By year eleven, aged sixteen, I'd had pretty much had all the training needed to navigate the deep world of medical care. I'd experimented with some alternative medicines and was met with more offers of solutions to my unsolvable disease and symptoms that triggered my gut instincts to run and run i did eventually. I think the power of the mind is astounding but it can't change physics and despite all the hope and energy chanted through my body, nothing will change my dna or build. I gave up on all medical interventions that weren't absolutely necessary and got on with living within a body no one knew anything about so it was up to me to figure it out. I haven't yet but an starting to try. I've ignored my body for as long as i could as all it has ever given me is trouble. If my head wasn't so determined i would of slowed down along time ago. I don't want to slow down anymore but there minimal i do do is so exhausting. I'm adjusting but the anxiety that comes with any plans, short or long term seems to grow as i get older and my body throws up more confusing signals. #project117 #hocuspocus #myths #raredisease #choices

Resilience diary - pain today: 5/10. Photo: "Ðäŋċě" Our year eleven school camp was a week away at the snow. Well with it taking a day there and one back the actually skiing part was three days but that's better than none and better than schoolwork. The snowy mountains, the name given to the occasionally snowy bit of rolling hills are about six hours drive south of Sydney passing by the nations capital to the narrow range of hills capable of such entertainment. At the time i was still between skiing and snowboarding but found skiing better for my legs as just had to hold a squat and avoid turning. It would be a few years before i came across my mini sized skis that i still use today. The camp came and past, with some memories of rewiring an alarm clock and my first memorable photo but otherwise a blur of action like most others of this age. I was dancing through time now. #project117 #ski #schoolcamp #dance #spin

Resilience diary - pain today: 5/10. Photo: "Ťǒpş" After six or seven years in scouts i was pretty self sufficient when it came to organising things. The training was brilliant as it was hidden under the cloak of immense fun. I was no good at paperwork there though either and never bothered with the quite prestigious queen scout award. I occasionally got things signed off as i needed them to do certain activities to show a certain skillset. I had learnt a bunch of survival skills and was trying to apply them to everyday life. Work, friends, family. There seemed to be a connection and it was communication. I was improving mine and benefitting from it. The more people i talked to the more i understood how to live my life, choosing the good bits and learning to navigate the bad. Being inexperienced is so scary. #project117 #tops #hiking #scouts #views