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...
It has been hard for me to explain that an "assessment for services" can make me ill and i am not able to explain myself anyway. I have trouble using phone, answering questions but everyone expects me to speak for myself. I have been ghaving home care for 14 years so there is already information on file. Its just managers getting paid to fill in forms but no-one to take the time to learn about the condition and act accordingly,
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