Tag Archives: PSA

Public Service Announcement

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Communicating Stress Levels

I struggle with cPTSD. This is a way I found to communicate with my partner about my status so they can be more considerate without getting triggered themselves.

It’s like living in bear country. People who don’t live in bear country don’t worry about bears at all. I’m always at some level of alertness/activation if I’m not in my safe space.

bear country – I have to be alert for signs of bear, so I can’t be totally relaxed.
bear tracks – I’m relieved the bear isn’t around but disappointed to see its tracks.
audible something – My attention is split trying to figure out if what I’m hearing is a bear.
audible bear – My attention is on the audible bear to make sure it’s not coming closer.
visible bear – Even more focused on the bear and being prepared to move away.
approaching bear – I’m trying to move away from the bear and get safe
charging bear – I’m running away trying to get safe
bear attack – I’m no longer functional (may go non-verbal, etc.)

If you get between me and the bear you’re increasing the danger level for me since I can’t see it. If you don’t move when I ask then I’ll need to move. If you follow me and block my view again then you start to become a bear yourself. If a bear is too close I might become a bear myself in defense.

It has really helped reduce the amount of defensiveness and triggering. I don’t have to explain if they are the bear, I’m the bear or something else entirely (headache, etc.) – I just say “bear” and they give me space.

This is just a metaphor for communication about the sympathetic nervous system and how activated it is — also referred to as being flooded, triggered or dysregulated.

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Things I’ve Shared

For the hard path we’re walking.

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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.

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Finding a Good Therapist

Finding a therapist is pretty straightforward, for example you can use a site like:

Find a Therapist, Psychologist, Counselor – Psychology Today

Or follow instructions on who to call like these:

Finding a Mental Health Professional | NAMI

The harder part is figuring out if the therapist is actually helping you.

I only recently learned that they should be giving you homework – like something to practice or a question to think about.

You should feel safe and comfortable with them.
If you don’t feel that way with any person, then you might consider finding someone you’re willing to explore and address that with despite how you initially feel. You could also try a group setting where you can listen and learn or watch videos or read books to get started on healing.

Even there you should get actionable items to work on. For example, all the various 12 step groups have you work the steps of the program. This video mentions starting with breathwork which there a lots of different videos you can look through to find one that works for you. I try to do box breathing daily, especially while driving or other tasks like that. Books like Parenting From the Inside Out by Dan Siegel also give end of chapter activities to try.

If you’re just paying someone to listen to you vent, they aren’t doing a good job. They should listen to you vent sure, but then they should be asking good questions. How or why did you end up in that situation? What do you wish you had done and what stopped you? What do you want to do in future situations like that, and what do you need to be able to do that?

I once had a therapist cancel me as a client because “It seemed I had nothing to work on and was just venting which I should do with friends.” – I went along with it, but many years later I realized that the therapist didn’t ask if I HAD friends I felt I could talk about this stuff with or WHY I wasn’t talking about it with my friends. I knew I needed help, I just didn’t know what I needed and didn’t realize that my therapist wasn’t skilled at figuring it out either.

Another therapist I fired after realizing I was only ever venting about one topic again but not being given any actionable feedback on how to change my own behavior to affect that relationship and the venting was just bringing me down.

One I had to stop seeing because driving there after work ended up being so tiring I couldn’t think or talk about anything else by the time I got there. Thank goodness for all the remote options we have now!

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Using the Restroom

Bio break, relieving yourself, whatever you want to call it.

Is it bad to hold your pee? – Heba Shaheed – YouTube TLDR: It can be.

Instead of asking if someone needs to use the bathroom, try asking if they can try to empty their bladders (hint – your kidneys are always working, so the answer will always be that there was at least something in their bladder, even if they weren’t feeling the urge to go).

Good explanations of why you should empty your bladder now instead of later? This bathroom is much nicer than the one at <location> or we’ll be traveling and stopping to find one later will be hard or might make you miss out on part of <activities>.

After using the toilet, make sure to wash your hands!

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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)

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Friends

I’m lucky to have supportive friends and family.

I wish I had more local female friends that recognized their neurodivergence. People don’t want to be told that their camouflage is failing.

Right now zoom is tiring as I adjust to my new meds and new diagnosis, so it’s hard to connect with my openly neurodivergent female friends that all live out of state.

I’m posting this so that others might realize that they could be more open about being Autistic and various types of neurodivergent.

Or go take Penelope’s class: Autism research that fixes your life – Penelope Trunk Careers

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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:

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Sutures (Stitches) or Gooey Gooey Glue?

I have EDS.

Glue allergies run in my family.

I’ve read (and can link later if someone cares enough to request it) that because our tissue can be more friable (tears easily) that stitches can result in worse scarring (keloid scars?). I’ve known people who have suffered from excessive scarring after surgeries before they found out they had EDS.

I chose glue for the tongue tie release since I’ve found I generally am fine the first use of a glue (mostly taping for joint support or bandages) and then move on to rash the second or third time and then I can discontinue use. I think the glue was mostly gone by the first day or two, definitely faster than they expected, but it healed up nicely.

I had dissolving stitches post-partum, getting the stitches was the only thing I needed pain meds (nitrous oxide) for. Getting those stitches in 2015 was the most pain I’d ever felt until I got punched in the nose in Dec. 2023. No, the lidocaine didn’t help reduce the pain of the stitches at all. Another EDS thing – metabolizing medications differently.

I had some cysts removed from my scalp during quarantine – one had gotten infected and ruptured so it went from “cosmetic” to “medically necessary” according to insurance. The dermatologist used non-dissolving stitches. I took the front one out on my own when it started itching and it healed up nicely. I tried to leave the one in back in until my appointment to remove them. I tolerated an extra day or two of itching and then couldn’t stand it anymore and removed that one too. I regretted waiting because that one took forever to heal while the one I took out earlier was fine. Partially the delay in healing was because it kept trying to form a keloid scar – turns out skin picking can cause scarring, but can also reduce scarring.

So far the Patch bandages and hydrocolloid acne patches are the only ones I haven’t developed any reaction to.