Thanks, Jo. That's interesting what you say about the processing both in itself and as a reminder of another consequence of their model and how it was adopted: they stopped listening to patients. I and others were saying these things back in the late 1980s.
Enjoyed listening to this brilliant interview. Especially liked your mindset regarding questions of blame, failure and such. Very important not to blame oneself, and also agree on how you deal with relations. At last, it is both reasonable and right pointing clearly at the ones responsible for the devastating situations patients are dealing with in so many ways. Thanks to both of you.
Episode 17 - The definition of insanity and hope. This week we react to the realization that we have given up on trying to recover and ponder what hope of change we should expect as we once again try to tackle the illness.
Thank you John Peters for a great interview. "I just want to clear my head ... I just want my head to clear ..." resonates with me so much. Cognitive limitations are what trouble and frustrate and limit me the most by far. I don't care about the rest either. As luck would have it in retrospect, having had (presumably) gradual onset ME since I was in my late teens in the 1960s, I became a classical musician, majoring in two instruments, so it took up most of my days for many years, and until recently I was still doing it. (I've had to stop because of physical reasons - osteoarthritis, muscle spasms, neuropathy.) Back in my university days I had no hope of dredging up and expressing ideas for written exams so each year I rote-learned essays I wrote to cover all types of possible questions. My god it was tedious!! I could automatically dredge up a good answer for anything despite brain fog which was my biggest problem then too. In those days, in the music education faculties, exam questions barely changed from year to year. If I hadn't learned well enough and had to think at all, I was lost. I don't know what it means, but I can 'think' about how to use my body/use of muscles etc. in fine detail at times to get the music results I want; imagine what I want the music I play to sound like in advance so that physically and emotionally I'm ready to do it; all at the same time as reading and interpreting the music notes and instructions on the page and following verbal instructions as well. It's constant problem solving and is effortless, presumably because it is non-verbal. Playing music has allowed me to "be in this world" in a sense. That's as far as my foggy state allows me to think about it so far. Added the bit about exam questions being predictable in the olden days. I hear things have changed since then!
I have finally had a chance to listen to this, fabulous stuff. The Gospel according to John should be preached everywhere. Took me back to my student days in the 1980s too. Rugby players could out-debauch anyone.
Episode 18 – How are you doing? This week we consider the difficulties in trying to achieve any kind of consistency with MECFS then jump into an exploration of how to answer the surprisingly complex question, ”Hey, how you doing?”. or listen on iTunes here https://podcasts.apple.com/gb/podcast/inaam-ep-18-how-are-you-doing/id1146553155?i=1000436042392
Episode 19 – feat. KT King This week we are joined by the fabulous KT King, author of Little Eden. We chat about the hard realities of chronic illness, the importance of good friends, how she represents MECFS in her writing and why everyone should find their Jessica Fletcher Hour. https://podcasts.apple.com/gb/podcast/its-not-all-about-me/id1146553155
Episode 20 = How Are You Doing? Part Two This week having had time to reflect, consider and incorporate the experiences of fellow folk with ME, we return to the complexities of answering the simple question, How you doing? On the way we discuss “coming out” as someone with ME and ask if we are doing our loved ones an injustice when we don’t share the full details of our illness.
https://podcasts.apple.com/gb/podca...ne-me-support-ni/id1146553155?i=1000439438241 and https://podcasts.apple.com/gb/podcast/its-not-all-about-me/id1146553155?i=1000444537462
Hi Paddy, I’ve just heard about your great work! Are you in N.I., do I know you? Sorry brain complete mush today but just had to hunt you out
