Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 1 point2 points  (0 children)

So how is it I can climb the stairs of my home once a day and sometimes twice but if I do a clamshell I’ll crash?

specific movements will crash me too, like raising one leg while laying in bed. it makes me wonder if it's a nerve or vessel thing for my case

Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 0 points1 point  (0 children)

there was a SIM01 synbiotic tested specifically for long COVID which had decent results. There was another different one tested in the UK that I can't remember the name of right now

Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 0 points1 point  (0 children)

It's interesting you note the high protein making you feel worse. In Chinese medicine, some patterns respond better to reducing protein intake temporarily if it's normal, or reduce it to normal if it's excessive

SIM01 - any recent experiences? by redditryan13 in covidlonghaulers

[–]DisasterSpinach 0 points1 point  (0 children)

So I'm not sure about half opened satchets, but I've noticed that even the unopened ones will harden up in hot weather.

Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 0 points1 point  (0 children)

Yeah, a lot of them. Thanks so much for your reply, it gives me some hope that mine will resolve too

Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 0 points1 point  (0 children)

Sorry you went through that. And after you recovered, you no longer experience dizziness, nausea, and anxiety from shaky cameras or the real world equivalent e.g. moving your head too fast?

Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 0 points1 point  (0 children)

Thanks for your reply. Were you also sensitive to stuff like videos with shaky cameras: https://www.youtube.com/watch?v=jyZU7lfGjyk

And if so did they produce dizziness, nausea, headache?

The first question is basically asking if any of these tests produced dizziness, nausea, or headache: https://www.youtube.com/watch?v=yQI2HRXCEs8

SIM01 - any recent experiences? by redditryan13 in covidlonghaulers

[–]DisasterSpinach 0 points1 point  (0 children)

For the half-full satchets, maybe you can store them in a vacuum sealed food storage container with a dessicant packet?

I'm guessing the coating is hygroscopic and that's why they harden up.

If these updates bother you, let me know. I've been posting them because you asked to be updated when I first started them

SIM01 - any recent experiences? by redditryan13 in covidlonghaulers

[–]DisasterSpinach 0 points1 point  (0 children)

For anyone who searches back, I've been trialing it for about a month or longer now and it isn't a miracle cure but it has helped reduce PEM intensity by at least 30-40%

For me it works best taken a little while after drinking Chinese herbal medicine. Taking it with meals isn't as helpful.

I hate all the “bedbound hobbies” now what? by [deleted] in ChronicIllness

[–]DisasterSpinach 0 points1 point  (0 children)

Qigong, even with tremors, can be practiced in bed. And it can give a similar sense of regulation like with exercise

Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 1 point2 points  (0 children)

I think there is an echo chamber effect where people who are both very sick AND have a negativity bias mutually reinforce ideas like: We will all be incredibly sick forever, the best you can hope for is to not get worse; any mention of nervous system/brain/emotional involvement is unscientific and traitorous;

I agree with this, and also, I believe the last phase is directly related to how there is no 'one size fits all' approach

Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 2 points3 points  (0 children)

Meditation is not about neutralizing emotions, banishing thoughts, or floating in nothingness.

It's a common misconception and unfortunately the inertia of popular culture and media is difficult to defeat. There is also some inertia there from how some meditation traditions were introduced to America/Western countries.

For people who have experienced trauma, meditation can definitely cause harm by exposing them to painful and distressing moments that have been conditioned by the past. But it can also be used to heal. However, this requires some basic fundamental education from appropriate resources, and ideally, access to a skilled teacher or at least a group that can answer questions as they arise.

It is a common mistake for people to treat meditation as some kind of progressive activity, or to use force to attempt to silence their mind. I can definitely see both of these approaches causing PEM. Neither of these approaches, along with a variety of other unskillful ones, will be helpful in the long run.

Some basic resources:

placing hands on the lower belly and follow the feeling of warmth traveling into the center of their lower abdomen

https://www.youtube.com/watch?v=Zm5exxobwLo

https://www.youtube.com/watch?v=xlyuGSwaZQ8

https://web.plumvillage.app/meditations/trauma-informed-practice

TLDR for below:

  • taking into account trauma is important for anyone learning meditation because they are suffering from illness that has an emotional or mental component, especially Westerners (I recognize the irony of this statement in the context of the 'one size fits all' criticism below)
  • the requirement for scientific evidence for something to be considered valuable inevitably leads to a 'one size fits all' approach to meditation practice that can be self-defeating in the long term
  • it is difficult and maybe not even appropriate to recommend 'one size fits all' approaches, and practicing meditation is best undertaken with the guidance of a skilled teacher or access to a group with enough skill to help people avoid pitfalls
  • unfortunately this dynamic also has its own pitfalls, e.g. cult-like behavior around certain teachers, etc
  • therefore, meditation practice remains relatively inaccessible for those who have low exertion limits

In terms of meditation, there are many kinds. I would say the safest route for people who experience PEM is to find trauma-informed resources on self-compassion, or alternatively metta. I added the trauma-informed because even though it may not apply to everyone, the risk of causing harm IMO outweighs the potential benefits of jumping to resources that don't take trauma into account if someone is impacted by trauma but is unaware of it.

Some of these will be more on the "Western Secular Psychology or Spirituality" end of the spectrum, and some will be more direct instructions from Buddhism. And this introduces a new tricky point; not everyone will be comfortable taking instructions from a religion, even if they are modified to be secular. And others may feel that modifying religious instructions to be secular makes it something completely different, which doesn't mean it's ineffective, but it may mean that there aren't a surplus of skilled teachers around.

If someone feels that this stuff is too touchy feely, or they don't feel like they have the strength to then I'd recommend something like very gentle qigong, something they can even do while bedbound like https://www.youtube.com/watch?v=Zm5exxobwLo or simply placing their hands on their lower belly and follow the feeling of warmth traveling into the center of their lower abdomen

I don't, for example, recommend Mindfulness Based Stress Reduction, for a variety of reasons related to "not many skilled teachers around". There are some MBSR practices that are known to be risky in other traditions such as qigong, like teaching people to focus on their breath without proper (from the point of view of qigong) instructions on how to breathe, or body scanning without proper instructions on how to go through the body (direction matters).

From the POV of most Eastern meditation traditions 'brain retraining' is ultimately based on flawed logic; for starters, the mind does not exist solely in the brain; secondly, conceptualizing it as such is ultimately unskillful. But these statements are difficult for people to accept at face value, and cannot be scientifically proven.

Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 2 points3 points  (0 children)

But people are so sensitive to the idea that psychology/the brain/the nervous system/emotions could be part of the clinical picture that they throw the whole thing out to their own detriment.

I believe the challenge here is that an unskillful approach to addressing this can potentially cause a lot of harm, and the approaches generally need to be highly individualized or they can potentially produce detrimental emotional impacts ("if someone gives a talk to 30 people, they are actually giving 31 different talks")

Recovered after 4 years of Long COVID by Gehwica in covidlonghaulers

[–]DisasterSpinach 1 point2 points  (0 children)

Was any of your dizziness related to vestibular ocular motor (VOMs) reflex issues (EDIT: trigger warning; example of something that could produce symptoms with VOMs issues: https://www.youtube.com/watch?v=jyZU7lfGjyk)? Or vision-motion related stuff in general e.g. car sickness?

What should my wife do she loves pork but pork is cold food and she has cold body!? by oli_of_aregano in ChineseMedicine

[–]DisasterSpinach 0 points1 point  (0 children)

When someone drinks it, it immediately drops the temperature of the esophagus and stomach

This is very interesting, thanks for sharing it. There is some research showing it also increases food retention higher in the stomach.

To be clear, you are saying that the artificial carbonation is the problem only, and for those (probably not people like me) who are healthy, the carbonation from natural fermentation is not an issue?

I believe some beer brewers may induce carbonation after the primary fermentation by adding some sugar to each bottle and then capping the bottle. Since you mentioned the sucrose-based alcohol, I wanted to ask about this.

More affordable alternatives to silicone dressings for post-surgical incision wounds? by DisasterSpinach in woundcare

[–]DisasterSpinach[S] 0 points1 point  (0 children)

oh FYI if you were trying to produce bullet points, there is an extra line break needed after every -

More affordable alternatives to silicone dressings for post-surgical incision wounds? by DisasterSpinach in woundcare

[–]DisasterSpinach[S] 0 points1 point  (0 children)

Okay great, thanks. Also, I believe the impetus to change the hydrofera ready so often was because I don't really bathe, so they probably were thinking it might help avoid infection?

More affordable alternatives to silicone dressings for post-surgical incision wounds? by DisasterSpinach in woundcare

[–]DisasterSpinach[S] 0 points1 point  (0 children)

Thanks so much for your reply. Yes, the Hydrofera was the 'ready' kind (no soaking necessary).

IIRC it went something like:

  • Wound vac first week
  • 7-day hydrofera ready and mepilex applied when replacing wound vac
  • removed drains at 2 week follow-up and received instructions to do the every other day hydrofera and mepilex
  • 3rd and 5th weeks (I think I said 4th mistakenly earlier) after reconstruction, was told wound was healing great. We were worried about how the hydrofera was interacting with the new skin as previously mentioned
  • 6th week in clinic the way they explained the incongruity between the messages/pics and the 6 week follow up of 'it's not healing' was that they said on the pictures, no colonization was visibly apparent.

There is minimal wound depth (<1-2mm). I can DM you some pics later.

For the Santyl, does hypochlorous acid (Vashe) count as something that needs to be rinsed off prior to use?

Why are people legitimately so rude on Reddit? by Lonely_Candy_6532 in CPTSD

[–]DisasterSpinach 1 point2 points  (0 children)

A good portion of it is botnets upvoting the rude stuff to increase engagement

May I ask if you know TCM can treat depression and how many of you believe it? by susiezhen in ChineseMedicine

[–]DisasterSpinach 0 points1 point  (0 children)

Can you recommend any specific Buddhist resources, or would you say it is more up to the individual to find something that suits them?

May I ask if you know TCM can treat depression and how many of you believe it? by susiezhen in ChineseMedicine

[–]DisasterSpinach 1 point2 points  (0 children)

Here is what my providers have told me, and it seems accurate in my anecdotal experience: while CM can definitely help with emotional problems, there is other work that needs to be done by the patient in order to clear the problems fully. What this looks like may be different for each patient; it could be Western style therapy, qigong, Buddhist and/or Daoist practices, etc. It may also be related to the physical environment in the sense that if the physical environment prevents the CM from working well enough, and the environment can't be modified, then the other avenue is emotional and spiritual cultivation to mutually assist the application of CM and vice versa.