Only the good die young

I wonder how old that saying is?

How long have we known what science only recently figured out?

Here’s how it works: stress hormones suppress the immune system.

The immune system doesn’t just fight off disease. It also cleans up dead, dying, misbehaving and malfunctioning cells.

That means a properly functioning immune system prevents cancer and autoimmune diseases.

There are three ways of dealing with stress.

  • The healthy way.
  • Explode outward.
  • Turn it inward.

The third one results in people pleasers who are too nice for their own good – literally.

The first two both release stress. The third lives with chronic low levels of stress suppressing their immune system.

In Gabor Mate’s book The Myth of Normal it talks about nurses accurately predicting ALS diagnosis based on how nice the person was.

Folks with autoimmune issues talk about “flares” when symptoms flare up after over exertion. The interesting thing is that it happens after – the increased stress during over exertion temporarily suppresses symptoms. When the stress and accompanying hormones decrease and the immune system ramps back up, either ignored issues get addressed or symptoms that were there before but you had acclimated to have to be readjusted to.

So either problems piled up and your immune system has to pull out the big guns or the temporary relief from symptoms reminds you how bad things actually always are and a “flare” is just how long it takes you to readjust/dissociate again.

I like to use the metaphor of shoes sometimes. You put them on in the morning and they fit fine. You walk and stand all day. Maybe they’re a little tired. You finally take off your shoes and it’s such a relief! If you have to put them back on for some reason, now they’re too tight and it really hurts. The thing is, they were too tight and painful before you took them off, you just didn’t notice because you slowly adjusted to it. Even if your feet suddenly swelled – that’s your immune system kicking in and trying to repair things.

I’ve been told that you can actually lose about 70% function in some cases before you start feeling pain.

Human bodies are amazingly resilient and redundant.

Books

Body Autonomy vs. Vaccinations

If your kid has a hard time with getting a shot, how do you square that with teaching them body autonomy?

What we’ve done is focused on your autonomy ends where another body begins.

If you need to spin around with your arms out – that’s fine. But you have to do it where you have space to not whack into someone else, because then you’re not respecting their body.

Vaccines might be trickier to understand for kids. But your right to go out in public and spread germs and avoid a shot ends where infants, old people, immuno-compromised and allergic folks are risking death because you couldn’t tolerate getting a shot.

It’s totally fine to cry and say you hate getting shots. It’s fine to ask for help with your anxiety. It’s not fine to just avoid it.

Here’s some of the things we’ve tried:

As an infant, nursing during or immediately after to soothe.

Spreading out the shots so there were no more than 2 per appointment even if that meant going back in two weeks for an extra appointment.

Having the kid sit on a lap and get squeezy hugs.

Using a blindfold or hat pulled down over the eyes so they couldn’t see.

Breathing practice.

Reading books about it or social stories.

Playing pretend of it (practicing what will happen & what we’ll do). You can try to get really accurate using a cold wet wipe on the arm and something to gently poke with like a pen or knitting needle.

Getting our own shot beforehand so they could see what happens.

Listening to music.

Using Buzzy Bee

Wearing a tank top so they don’t have to feel their sleeve being pulled up.

Having the nurse/doctor show them the needle (what you imagine is often scarier than reality). “Oh, that’s really small.”

Bringing our own preferred bandages.

Treats afterwards to celebrate their bravery and good dead.

Agreeing to pamper them for a couple days after while their arm is sore.

Talk about how they’re literally being a hero and saving lives.

Listening and validation their feelings about getting shots. (It’s scary, it hurts, I’m mad that I have to do it, I’m frustrated & disappointed they haven’t made nasal sprays for everything already. It’s annoying that it keeps hurting.)

Getting anxiety treatment/therapy.

Brushing protocol with an occupatinal therapist to help reduce sensory sensitivity.

This was what we tried and I’m sure there are other strategies out there as well. Just continuing to try to improve the experience and listening to your kid is a good way to reinforce that you’re trying to respect their body as much as possible – without risking other people’s lives.

We also talked about how in extremes, not respecting other people’s autonomy will result in losing ours. For example, adults who commit assault go to jail and lose their autonomy & freedom.

Even if getting a shot is super painful and we get miserably sick for a week every time – those are still temporary. Death is not. And while most often you don’t know who you’ve killed with your germs and you can live in ignorant bliss, sometimes you do – a baby cousin, a beloved grandparent. And you can’t undo what you did, you would just have to live with the regret.

A really informative video about vaccines and the (lack of) risk.

Feelings/Emotions

Atlas of the Heart List of Emotions – Brené Brown (brenebrown.com)

The Gottman Institute_The Feeling Wheel_v2 by Dr. Gloria Willcox

Feeling wheel versus emotion wheel

While many researchers and therapists have adapted the wheel for their own uses, the original version of the feeling wheel (with its six core feelings) was created by Dr. Gloria Willcox in 1982.

According to many sources, Plutchik’s wheel of emotions was first proposed in 1980. The two models are similar, with the main difference being the number of core emotions in the center. Strictly speaking, Willcox’s model is the feeling wheel and Plutchik’s model is the emotion wheel.

Emotion Wheel: What it is and How to Use it to Get to Know Yourself (betterup.com)

“Emotions play out in the theater of the body. Feelings play out in the theater of the mind- Dr.Sarah Mckay Neuroscientist & Author “

Emotions play out in the theater of the body
Different Types of Emotions in Psychology – All Questions Answered (calmsage.com)

I’m don’t believe you can actually separate the mind and the body (if the mind is in the brain and the brain is part of the body) but it’s a useful concept for trying to understand them.

Hydration

Figure out if your sense of thirst works (part of interoception). If you can go hours without getting thirsty, it might not be working so well.

If your “thirsty don’t work” then building in a hydration habit is important to avoid dehydration.

Ted Ed: What would happen if you didn’t drink water? – Mia Nacamulli – YouTube

Habits: https://youtu.be/PZ7lDrwYdZc 
Effective practice: https://youtu.be/f2O6mQkFiiw

Water | Bunny’s Info-Dump (sweetpeastudio.biz)

Water Calculator: Water Intake Calculator – How much water should you drink per day? (gigacalculator.com)

Dental care list

Preferred order but not required:

Mouthwash – swish for 30 to 60 seconds, then spit into sink

Floss (gets mouthwash between teeth)

Rinse and put away flosser

Brush:

  1. Wet brush
  2. Apply toothpaste if using (optional – the friction of the bristles is enough)
  3. Divide mouth into quadrants, spend at least 30 seconds brushing each one
    1. Either upper right, upper left, lower right, lower left
    2. Or right outsides (teeth together), left outsides (teeth together), top insides, bottom insides

Test for clean teeth using your tongue, especially both sides (inside/outside) of all four back molars. Get any spots that aren’t clean/don’t feel smooth.

If you can’t reach the back molars, look into tongue tie.

Rinse and put away toothbrush.

Clean tongue (use toothbrush or scrape with spoon, no special tongue scraper needed).

Clean tonsils if required (I use the spoon handle).

Spit as needed.

Spitting is why we brush and floss in or near the bathroom. If you live alone the kitchen sink works too. If you don’t live alone then you need to coordinate with those you live with to see if they’re ok with you brushing and flossing outside the bathroom.

Why brush & floss:

Ehlers Danlos & Neurodiversity Research

I’m so excited, a friend of a friend just shared all this:

Dr. Eccles specific research areas are Neuroscience, Psychiatric and neurodevelopmental features of connective tissue disorders, Mechanisms of chronic pain and fatigue.

The quickest way to see a summary of all her 67 published medical research with active links to each is here: https://www.researchgate.net/profile/Jessica-Eccles-3

Some titles of pubs just within the last 2 years:

  • Towards a Neurodiversity-Affirmative Approach for an Over-Represented and Under-Recognised Population: Autistic Adults in Outpatient Psychiatry
  • Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain
  • Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health
  • Connecting brain and body: Transdiagnostic relevance of connective tissue variants to neuropsychiatric symptom expression

You Tube Videos:

Autistic Inertia vs ADHD?

PDA and/or ADHD (executive function problems) – It took reading a bunch of comments to realize that Autistic Inertia is probably just comorbid ADHD executive function challenges.

How to ADHD on YouTube has a lot of great videos on various ways to manage problems like this. Wall of Awful, Motivation Bridge, Procrastination, tools like SunSama, Pomodoros, Bullet Journals, body doubling (co-regulation for adults), accountability buddies

More of the same:

What is autistic inertia? https://autismawarenesscentre.com/what-is-autistic-inertia/

I’m not sure that giving things a new name is helpful. It’s executive function difficulties no matter what the “reason” is and know that means it’s easier to find solutions.

Mistakes

Stub

Links:

What to do when Mistakes make you Quake book

other books

wall of awful videos from How to ADHD

Mistakes just mean you tested a hypothesis and proved it wrong. If you don’t know the hypothesis, you can try to figure it out. If you do know, then you can try to document it, your observations and conclusions. Generally, conclusions are just coming up with a new hypothesis to try.

Scientific Method (life is an experiment)