Today’s headline: CF sucks, but CF + it’s many implications + additional chronic illness, sucks even more. The impact of new diagnoses on our souls, new symptoms and new treatments and the myriad of overlapping effects this means further amplifies our need to live in peace with ambiguity and the need to take each day as it comes. I am trying.
It seems at to me that we live in a world where wars are waged by elected twats with less sense than the people who voted them in; where famine is ignored in favour of celebrity gossip. In this climate, simply being aware of your own privilege - warmth, safety, freedom - and wishing those things for others makes you a ‘woke lefty’. Everyday starts with a dose of anger and melancholy, just from watching the news. I feel exhausted at times, living in a world that so often has forgotten how to care. On top of that, life with chronic illness in the family, where you can only manage, never cure, it still amazes me that we find laughter in every single day.
We have one new positive; a new clinical trial to focus on, hopefully in the next month or so. That, we so need. As ever, he is my hero, and increasingly takes the lead in every way, making our team stronger. At home, our funny, bright and beautiful girls and kooky dogs make everything seem brighter for us and nature helps ground me further. More soon x
