New article out
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...

These are all very good points, and well laid out. But it is so unbelievably hard to do when dealing with medical professionals about CFS or ME.
ReplyDeleteAs I have found out (again) this week - to my dismay.
I don't want to go into too much detail here, as I'm still reeling from "a good experience turned bad" .
And my disappointment and frustration of realising that (yet again) I can talk to doctors till I'm blue in the face - but they still choose to dismiss or ignore 80% of my symptoms.
I'm now starting to agree that the name CFS should be ditched, because the word fatigue is damaging. And trivialises.
But I naively thought that when referred to a "Centre Of Integrated Care" - the doctors would actually listen to me. And not just focus on exhaustion & stress - while ignoring 80% of the rest of my symptoms.
Sorry - I didn't mean to turn this into a long story Greg & Linda.
But reading this good post just reinforced how difficult it is out there - in all our dealings with medical people relating to ME or CFS.
Sending all best wishes
Anne Dean