"If you can't explain it you don't know it well enough." -Einstein
It's been three years since my last belt test. I tested for 1-kyu in Goju Ryu Karate on November 11, 2020, via Zoom online. My tests are adapted to suit what I can physically do, which is largely kata (forms) and solo kihon bunkai (basic applications). I also need to understand what others can do with the system, and I need to be able to adapt what I can't do in such a way that it would work in the street. This was set from Day One with my Sensei in a meeting that lasted for four hours while we sussed out what my training was going to look like. That was about nine years ago. That's a long time to be a kyu-level belt (non-black). But some people never get this far.
The notes below are a summary of what I've learned about muscles locking up intensely and painfully. My port and daily IV fluids must have been preventing these problems for years. I'm grateful for seven years with my port, it's unprecedented. My medical team is incredible and the value of a supportive Primary Care Physician cannot be understated. For over two years I've been in Physical Therapy and Occupational Therapy, among other rehabilitative efforts. I've also beaten the grave four times, retired, started a small business, bought a new-to-me mustang (I love mustangs, it's like getting a limb back), while also living through the pandemic and attending karate to the fullest, safest extent possible. (That's another story worth telling and this little note is to remind myself!) None of this is medical advice and don't trust everything you read on the Internet. I haven't even run this by my PTs yet.
The Ehlers-Danlos community has already benefited from my Sensei's leadership by observing and trying these methods. My Sensei has also been actively outspoken beside me, and others, teaching people with all sorts of abilities that martial arts is for everyone, that our school welcomes everyone. He's helped lots of us unpack negative experiences with instructors who pushed EDSers to the point of injury or quitting.
Indomitable acceptance in the dojo is founded in the school's Christian values, and people of all backgrounds are welcome. If I were Jesus that's what I'd want to see. Anyway, on with the science notes:
On Static vs. Dynamic Exercises and Stretching*
- Given
- When the muscle must contract it's happy to do its job, even if that job is a little tougher because of instability.
- When the muscle must relax, those fibres have no idea where to stop because tendons aren't stabilizing or providing usable feedback. So, the muscle is inclined to remain contracted: "Any time now, tendons.... Guys?"
- Interventions: milieu approach, e.g.,
- Isometrics give the muscles a chance to practice both strength (muscle's ability to contract)
- Short, sustained reps for tone (muscle's ability to remain contracted), and
- ...also releasing and relaxing in between reps (except they suck at relaxing).
- Manual therapies aid in the physical release of muscle fibres which can only relax passively.
- Pharmacology aids in the chemical release of muscle fibres, which are chemically gated by extraneous sympathetic activity, hormones, diet, exercise, psychology, family hx, etc.
- Things I couldn't fit elsewhere
- Timing - time of day/month; interventions before/after activity; last meds, food, hydration, electrolytes
- Psych - last boost of oxytocin or dopamine; last interpersonal reaction; psychological flexibility; emotional regulation; cats?
- Environment - weather; climate; physical safety risks; fall risks
- Adaptive equipment - tapes; braces; splints; mobility aids, environmental mods
- Support - care team; community members; friends; family, and access to them all
- Misc - what else is hurting (and what isn't!); energy levels; cognition; quality of above factors
- If a muscle group isn't working right, check the opposing muscle groups.
- Ongoing "learning opportunities" (that aren't necessarily functional goals, but are more qualitative)
- Emotional endurance when things look bleak for a long time
- When I get sick, any of this knowledge that isn't rote goes out the window.
- Prevention and managing crashes (exhaustion, injury)
- I forgot how to know when a muscle is fatigued vs. exhausted, and when that's a useful vs. hazardous.
- WTF, diet/guts?
- Consistent exercise program
- Managing kinesiophobia and coping without a port like a freakin' boss
- WTF, mind/body connection?
- Communicating with providers succinctly ;)
- Things to remember
- "If you can't explain it you don't know it well enough." -Einstein
- I didn't come this far just to make it this far
- I must rest when my rampage is over
- Didn't cause it, can't cure it, might bitch about it, can endure it.
- Nourish to flourish
- Take your meds. Your doctors know they're not prescribing Jolly Ranchers. (that's mine!) :)
- Sometimes to let it heal you have to stop fuckin' with it. (also mine) :)
Be well. Whatever you celebrate, Happy That!
*I am not a medical professional, so check with one. Don't believe everything you see on the Internet.
