Over the course of my experience with chronic pain post vaccine, but especially during the past 4+ months after Covid when things got ultra intense — with the electrifying swarm of migraines attacking every part of my head, neck and shoulders, 24/7, leaving me bed bound, riddled with an anxiety that threatened to erase me—I have had to wrestle with stretches of deep isolation. As Suleika Jaouad, cancer survivor, writes in her New York Times best seller,
Great article. I too have found healing value in online forums and places. I once wrote about how podcasts can be helpful for those of us who are forced to rest a lot. Sorry to hear about your own chronic health issue.
What community have you liked the most? And yes, I think since the established medical community is not suited in its current state to handle chronic illness, the virtual realm is the place where it will be treated.
A facebook group called "The Vagus Study Group" has been great for me. Also, I am enjoying substack - I didn't expect a sense of community here... it is more like a social media network than I imagined, where we are sharing long form conversation posts rather than short posts, photos or links.
I would like to develop that. Is that on your wall? Or is there a particular substack you like. I think isolation journals does a great job w the limited community features. I will join that FB group myself. Interesting to see you are of proponent of vagus things. It's certainly around in some Tms/sarno communities but more so fringe of long Covid.
Not claiming any expertise, but from what I've heard about long covid and vaccine injury, many of the symptoms are similar to those in nervous system dysregulation and neurological chronic illnesses, and trauma, including POTS like symptoms, tinatus, chronic fatigue and so forth? As if the virus or vaccine has set off a defence cascade which has gotten stuck on. I definitely feel that a lot of the therapies and interventions which help with nervous system dysregulations should carry over, and may be worth a try?
I am practicing rewiring my brain with messages of safety and calm, graded exposure and some journaling/therapy to build emotional resilience. I do some restorative yoga with some vagus techniques like humming etc. is there anything you are a particular fan of? I do coherent breathwork for a while but didn't see too much difference in my hrv.
Here is a list of things which my studies lead me to believe are most helpful for living a healthy, good life. These include the need to be doing everything we can to calm our Nervous Systems, Immune Systems, inflammation, stressful emotional states and anxious thoughts, to address unhealthy relationships, to restore a sense of internal and external safety, and to send the message to our biology that “the war is over”. I would currently summarize these as:
identify and remove, or remove ourselves from, as many stressors as possible;
prioritise sleep, rest and relaxation;
minimize use of and exposure to non-natural chemicals and chemical products;
remove inflammatory, highly processed and artificial foods from diet;
restore healthy patterns of breathing from the diaphragm and through the nose;
address, restore and maintain fascia health;
hydrate extremely well;
address constipation;
clear lymph nodes;
cultivate a daily meditative practice, whether meditation, hypnotherapy, art therapy, etc., anything which gives our minds a break from verbose, busy and anxious thoughts;
re-connect body and brain through daily movement and dance;
spend time in nature;
appropriately stimulate the Ventral Vagus Complex and Social Engagement functions of the Nervous System;
synchronise brain hemispheres, rebalance brain by cultivating the right brain’s embodied, connected, big picture, present way of attending;
attend to ruptures in interpersonal relationships, past and present. and identify and avoid toxic people;
practice gratitude, forgiveness, kindness and compassion, seek to let go of chronic anger, hate, despite and try not to engage in judging, blaming and shaming others;
improve relationship with food and mealtimes through how, where and when we eat, not just what we eat;
determine, by trial and error if necessary, our personal responses to food, and find our own personalized optimal health giving foods and food sensitivities;
address trauma with appropriate therapies;
engage in personal development and cultivate a growth mindset;
reject the Medical Institutionalized Narrative, which uses the language of war such as “battling the disease” or “fighting PD”, and instead focus on making peace inside and out;
stay curious and playful, maximise joy and pleasure in life;
focus on what the suffering has to teach us, and not on the suffering itself;
avoid consuming the News Agenda, don’t watch horror films and thrillers, instead cultivate an enjoyment of and appreciation for comedy and romance;
don’t totally abdicate the responsibility for our own health to “experts”, but instead learn as much as possible about how own bodies and minds work;
seek to gain as much agency to act independently and make free choices as possible.
understand that perfectionism and trying control everything comes with great cost;
develop our sense of having a right to be, the knowledge that we are enough as we are, and that we have no points to prove;
cultivate a sense that life is purposeful;
Although this may seem like a tall order, these all support one another and there are many positive feedback loops and virtuous circles. Think of it as a menu of choices to pick from, and that not all need to be pursued simultaneously, so we start with the lowest hanging fruit for us, and this will help open up and make some of the other options easier to incorporate. None of these suggestions are individually particularly onerous or consuming of large amounts of time per day. It is more about taking a long term view of changing the habits of a lifetime, repatterning ingrained, unhealthy behaviours, and removing ourselves from toxic environments, relationships and situations, thereby decreasing our exposures to as many risk factors for worsening health.
Great article. I too have found healing value in online forums and places. I once wrote about how podcasts can be helpful for those of us who are forced to rest a lot. Sorry to hear about your own chronic health issue.
What community have you liked the most? And yes, I think since the established medical community is not suited in its current state to handle chronic illness, the virtual realm is the place where it will be treated.
A facebook group called "The Vagus Study Group" has been great for me. Also, I am enjoying substack - I didn't expect a sense of community here... it is more like a social media network than I imagined, where we are sharing long form conversation posts rather than short posts, photos or links.
Do you mind linking your podcast article?
Sure - here it is https://www.outthinkingparkinsons.com/articles/podcast-therapy
I would like to develop that. Is that on your wall? Or is there a particular substack you like. I think isolation journals does a great job w the limited community features. I will join that FB group myself. Interesting to see you are of proponent of vagus things. It's certainly around in some Tms/sarno communities but more so fringe of long Covid.
Not claiming any expertise, but from what I've heard about long covid and vaccine injury, many of the symptoms are similar to those in nervous system dysregulation and neurological chronic illnesses, and trauma, including POTS like symptoms, tinatus, chronic fatigue and so forth? As if the virus or vaccine has set off a defence cascade which has gotten stuck on. I definitely feel that a lot of the therapies and interventions which help with nervous system dysregulations should carry over, and may be worth a try?
I am practicing rewiring my brain with messages of safety and calm, graded exposure and some journaling/therapy to build emotional resilience. I do some restorative yoga with some vagus techniques like humming etc. is there anything you are a particular fan of? I do coherent breathwork for a while but didn't see too much difference in my hrv.
Sounds like you are on the right path, and doing the things that can help. I keep a master of list of things that I've found helpful here: https://garysharpe.substack.com/p/lessons-learned-in-the-crucible-of - I'll copy paste the list here too:
The Best Things I Learned Along the Way
Here is a list of things which my studies lead me to believe are most helpful for living a healthy, good life. These include the need to be doing everything we can to calm our Nervous Systems, Immune Systems, inflammation, stressful emotional states and anxious thoughts, to address unhealthy relationships, to restore a sense of internal and external safety, and to send the message to our biology that “the war is over”. I would currently summarize these as:
identify and remove, or remove ourselves from, as many stressors as possible;
prioritise sleep, rest and relaxation;
minimize use of and exposure to non-natural chemicals and chemical products;
remove inflammatory, highly processed and artificial foods from diet;
restore healthy patterns of breathing from the diaphragm and through the nose;
address, restore and maintain fascia health;
hydrate extremely well;
address constipation;
clear lymph nodes;
cultivate a daily meditative practice, whether meditation, hypnotherapy, art therapy, etc., anything which gives our minds a break from verbose, busy and anxious thoughts;
re-connect body and brain through daily movement and dance;
spend time in nature;
appropriately stimulate the Ventral Vagus Complex and Social Engagement functions of the Nervous System;
synchronise brain hemispheres, rebalance brain by cultivating the right brain’s embodied, connected, big picture, present way of attending;
attend to ruptures in interpersonal relationships, past and present. and identify and avoid toxic people;
practice gratitude, forgiveness, kindness and compassion, seek to let go of chronic anger, hate, despite and try not to engage in judging, blaming and shaming others;
improve relationship with food and mealtimes through how, where and when we eat, not just what we eat;
determine, by trial and error if necessary, our personal responses to food, and find our own personalized optimal health giving foods and food sensitivities;
address trauma with appropriate therapies;
engage in personal development and cultivate a growth mindset;
reject the Medical Institutionalized Narrative, which uses the language of war such as “battling the disease” or “fighting PD”, and instead focus on making peace inside and out;
stay curious and playful, maximise joy and pleasure in life;
focus on what the suffering has to teach us, and not on the suffering itself;
avoid consuming the News Agenda, don’t watch horror films and thrillers, instead cultivate an enjoyment of and appreciation for comedy and romance;
don’t totally abdicate the responsibility for our own health to “experts”, but instead learn as much as possible about how own bodies and minds work;
seek to gain as much agency to act independently and make free choices as possible.
understand that perfectionism and trying control everything comes with great cost;
develop our sense of having a right to be, the knowledge that we are enough as we are, and that we have no points to prove;
cultivate a sense that life is purposeful;
Although this may seem like a tall order, these all support one another and there are many positive feedback loops and virtuous circles. Think of it as a menu of choices to pick from, and that not all need to be pursued simultaneously, so we start with the lowest hanging fruit for us, and this will help open up and make some of the other options easier to incorporate. None of these suggestions are individually particularly onerous or consuming of large amounts of time per day. It is more about taking a long term view of changing the habits of a lifetime, repatterning ingrained, unhealthy behaviours, and removing ourselves from toxic environments, relationships and situations, thereby decreasing our exposures to as many risk factors for worsening health.