SEVERE ME UNDERSTANDING AND REMEMBRANCE DAY Aug 8th We were asked by ME Group Australia to write an article on finding Hope in this place of endless, severe suffering: You Are Precious And Your Presence Matters, a Reflection on Hope. Greg and Linda Crowhurst When you are diagnosed with Severe/Very Severe ME, hope is an ephemeral, delicate thing. If you hope to be immediately better, or return to your previous life, those hopes will, most likely, be dashed, if the diagnosis is correct. When I was asked to write this article for ME Group Australia, I asked Linda, my wife, what hope means to her. She commented : “Hope for me cannot be about anything specific, unless that specific thing is actually achievable, or potentially achievable or possibly achievable at some point in time, even if it feels unlikely . For me hope comes in small things, not big things. Hope of a better moment, hope to not be irritated, hope to not be distressed, hope not to be tormented in every single mome...
Greg, you have such a kind and generous spirit. You do so much for Linda, she is trapped in a neverending struggle. I hope she can learn to relax her body somehow as this will allow oxygen to flow through and ease the build up of acid.
ReplyDeleteI hope you yourself get moments of peace and that someone is there to care for you too. You are both so strong, I wish you would allow yourselves to not fight for your cause day in, day out, and just give yourselves some time off as I'm sure it would benefit both of your health and wellbeing.
Bless you ! Thank you so much. Yes, what you say is true; our greatest longing is to not have to keep struggling like this but the injustice, the suffering is so immense. Sadly there is no escape, it has invaded every moment of our life together,our effort, most days, is spent on coping and survival.More than two decades have passed; the depths of agony, the wilderness of Very Severe ME, that Linda knows, defies description in its horror and complexity. I am determined to fight back with everything I have got.xx
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