Hi Scott! Thanks so much. Would you be willing to send me a voice memo explaining the “rules” of presencing? I’d love to include you in my next episode. :)
For me I'm moderate severe, as its I feel important to honour the people who are Severe... Pure severe. These people are bed bound, sometimes tube fed and need personal care . They live their ives in bed and often are so light sensitive they need the curtains shut. Social interaction can become almost nil as it makes them flare .
25% of ME CFS sufferers are moderate severe and a small percentage of this 25 % are severe. ( doesn't quite make sense but best way I can explain it.. That's what statistics says anyhow more likely to be higher than this. Aka the #millions missing .
Of the other 75% people range from being able to work but struggle to well the point before moderate severe.
Often people deteriorate as pacing activity isn't adhered to correctly and the goal post keeps changing but often isn't know until it's obvious. It's a very tricky illness to manage .
I've deteriorated over years.. With the biggest deteriorations after pushing it commonly known as post exertional malase
Science hasn't truly found the causes and so the medical professionals don't have a solution aside from pacing to try and prevent further deterioration
However science is pointing to under lying viral causes added with high living / activity and a fractured nervous system . Parallels are now being drawn with long COVID and the hope and prayer is this will lead to a solution for us.
I'm moderate severe . I'm mainly part time bed. I can get up make my breakfast and heat my other meals up Even in the worst of a flare up I can speak on the phone ( all be it shorter and less) look at my phone and get some fresh air standing at the door or sat at the window for a short time.
At my best I can socialise at my home all be it short in comparison to ' normal ' go for short garden walks, do art, minimal cleaning, small bits of gardening, sing and dance ( the dancing is carefully monitored and in my house and my sense of humour is good.
For me it's important to be happy about what I can do and that I have some bandwidth left.
Oh and I have been wishing to know more about the presencing group ever since the first episode I heard where you spoke of it. Sounds amazing. Is it anything which could be approximated gia zoom for people who have no friends, or have limited ability to get out? Maybe I would like to host a group locally as I make more friends. Would you be willing to share about the way you are doing it?
I’m finding myself wondering if you could teach me to play my Grandma’s harmonica. I used to hold my little child one in my mouth and breath and out, but as a flute player, it always seemed a mystery to me how the music was to be made on harmonica. I was amazed my Grandma could do it.
Hi Hal - I wanted to let you know how much I’ve been enjoying these jams of yours on TikTok and Insta. Sometimes I play them on a loop when I need to concentrate at work or I’m meditating. My two faves are Pan Jam and the recent one with the bird song in the background. I’m glad you have the energy to do these and that you’re willing to put them out there for us to enjoy.
So happy to hear that you are going to New York to see Hallie! ! Your music is so wonderful. I think a lot of body workers would enjoy a nice instrumental album for healing work!
Hi Hal , only read this week just now . Will listen later when I can offer my full attention . Looking forward to hearing about presencing . Thank you Hal
I’m so glad you love presencing! Yay! It’s the best. I’m crying.
Hi Scott! Thanks so much. Would you be willing to send me a voice memo explaining the “rules” of presencing? I’d love to include you in my next episode. :)
… and I’d love to share it with my presencing group
I’m on it!
Great! How’s it going? Don’t make it a big deal... just a minute or two explaining “how to.” You can text it to 330-554-5950. Thanks! H
Hi Hal, I very much enjoyed the music. I find it interesting that you referred to your cronic condition as moderate.
Ps thanks for allowing me the space and reflection to give my own experience and knowledge on this incredibly important topic.
Enjoy those bodies folks mine used to be a machine and now it's a carefully tended retired one :)
Hi Pat..
For me I'm moderate severe, as its I feel important to honour the people who are Severe... Pure severe. These people are bed bound, sometimes tube fed and need personal care . They live their ives in bed and often are so light sensitive they need the curtains shut. Social interaction can become almost nil as it makes them flare .
25% of ME CFS sufferers are moderate severe and a small percentage of this 25 % are severe. ( doesn't quite make sense but best way I can explain it.. That's what statistics says anyhow more likely to be higher than this. Aka the #millions missing .
Of the other 75% people range from being able to work but struggle to well the point before moderate severe.
Often people deteriorate as pacing activity isn't adhered to correctly and the goal post keeps changing but often isn't know until it's obvious. It's a very tricky illness to manage .
I've deteriorated over years.. With the biggest deteriorations after pushing it commonly known as post exertional malase
Science hasn't truly found the causes and so the medical professionals don't have a solution aside from pacing to try and prevent further deterioration
However science is pointing to under lying viral causes added with high living / activity and a fractured nervous system . Parallels are now being drawn with long COVID and the hope and prayer is this will lead to a solution for us.
I'm moderate severe . I'm mainly part time bed. I can get up make my breakfast and heat my other meals up Even in the worst of a flare up I can speak on the phone ( all be it shorter and less) look at my phone and get some fresh air standing at the door or sat at the window for a short time.
At my best I can socialise at my home all be it short in comparison to ' normal ' go for short garden walks, do art, minimal cleaning, small bits of gardening, sing and dance ( the dancing is carefully monitored and in my house and my sense of humour is good.
For me it's important to be happy about what I can do and that I have some bandwidth left.
Love the way you are creatively LIVING in your body!
Happy to hear you have your plan for going east to be with Hallie. Very happy and not surprised.
Love the music!
Oh and I have been wishing to know more about the presencing group ever since the first episode I heard where you spoke of it. Sounds amazing. Is it anything which could be approximated gia zoom for people who have no friends, or have limited ability to get out? Maybe I would like to host a group locally as I make more friends. Would you be willing to share about the way you are doing it?
I’m finding myself wondering if you could teach me to play my Grandma’s harmonica. I used to hold my little child one in my mouth and breath and out, but as a flute player, it always seemed a mystery to me how the music was to be made on harmonica. I was amazed my Grandma could do it.
Hi Hal - I wanted to let you know how much I’ve been enjoying these jams of yours on TikTok and Insta. Sometimes I play them on a loop when I need to concentrate at work or I’m meditating. My two faves are Pan Jam and the recent one with the bird song in the background. I’m glad you have the energy to do these and that you’re willing to put them out there for us to enjoy.
I don’t always comment, but I do look forward to opening my email and seeing your sub stack every Saturday morning. 🤍
Very much enjoyed the music. I wanted more. (-:
Looking forward to TikToks, from both you and Hallie, about her show.
And anxious to learn about presencing. Thanks for another great episode.
So happy to hear that you are going to New York to see Hallie! ! Your music is so wonderful. I think a lot of body workers would enjoy a nice instrumental album for healing work!
Great music Hal. I enjoyed this week's low key episode. Thanks.
Hi Hal , only read this week just now . Will listen later when I can offer my full attention . Looking forward to hearing about presencing . Thank you Hal