Trust and Terminal

navigating life with a terminal illness

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Category: Heart

On Pity and Compassion

Posted on February 12, 2026February 12, 2026 by Monika

When I was a lot younger, I tended to think that pity was a nice thing; it meant the person cared, right? I couldn’t really understand why someone wouldn’t want it. I wondered at the vision of a weathered figure, perhaps a cripple (yeah I’m old school), either in a movie or on a street…

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On relationships..

Posted on April 11, 2025April 11, 2025 by Monika

On the cusp of my first diagnosis (“yes.. confirming your gene is mutant”) I was in a long term relationship with a guy who locked up at seemingly any display of sadness or upset emotion from me. He just didn’t know what to do or how to respond, even if sentiments were written down and…

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About Me

Welcome to my page! Im a 40-something Dutch-Indonesian Kiwi girl living in Brisbane, Australia. This is my story living with a degenerative, life limiting illness.

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chronicillsofmon

Living life with VCP Disease/IBMPFD/MSP1/ALS-14/MND 💗

Instagram post 18006830816903375 Instagram post 18006830816903375
Using BodPod and Quark Respirometer for the MND En Using BodPod and Quark Respirometer for the MND Energy Metabolism and Lipid Storage in MND Study at UQ. In part, investigating whether energy metabolism is altered in MND and whether these changes are linked to disease severity and progression.
Thanks to Eli, Holly, Mel, Shu and Dee! 
#mnd #als #mndresearch #bodpod  #sohotrightnow
Needle Muscle biopsy University of Queensland Dec' Needle Muscle biopsy University of Queensland Dec' 2025. Full procedure here: https://youtu.be/t6evtqgHWFM?si=LKWeNFFs-K4axbK5 (sensitive content) 
#musclebiopsy #universityofqueensland #mnd #mndresearch
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