If I'm getting so much stronger in the dojo, shouldn't that translate to being stronger outside the dojo?
Ehlers-Danlos Syndrome is a permanent and disabling condition; it is not something one can exercise away.
During the day I wear splints or braces for the joints that aren't staying in place on their own. They do this because EDS makes connective tissues weak, so tendons and ligaments don't hold bones together. That leaves muscles to do their own work of moving the body, plus the added task of stabilization. But muscles are only designed for one of those tasks.
As my muscles get stronger I get more steady and powerful, but I can't keep up the facade for long. The fact is, no matter how strong I get I am practicing karate despite having a terrible genetic disorder.
Karate with EDS requires a lot of prep work. If I have karate on Monday, preparation starts Saturday night. I work on getting enough sleep Saturday in case I can't sleep on Sunday; if I can't sleep on Sunday it means I won't have enough energy for a full day of work before karate in the evening.
On Sunday I do all my prep work for the week: laundry, housework, grocery shopping (if I have the energy, which I don't today), cooking meals for the week (if I have the energy, which I don't today, and will beg help of my generous roommate and friends, which also takes time and energy to coordinate--energy I don't have).
On Monday I brace and splint during the work hours, using every possible adaptive modality I have. I need to reserve enough energy to drive home safely and cook my dinner, because I need any extra time to rest and hydrate before karate that I can get.
When my alarm goes off saying it's time for karate I have a hard time getting up from my rest period because I'm exhausted from work. I'm also usually nauseous because I ate dinner and it takes extra time for my digestive system to do its work, and more meds. But I can't wait to see my Sensei, so I push myself to get up. It helps that running fluids usually sends me to the restroom by this time.
Next I put on my gi and check my IV fluids. I take meds to control the pain and lather my body up with cream that has a numbing/analgesic agent so that I don't feel as much sharp and stabbing pain while I workout. Karate is the one time I let myself be free of splints and I want to work out as much as I can, which requires pain control. Tired of reading this yet? It's a lot, and this is just a quick run-down.
I thank my lucky stars that the dojo is 15 minutes away, mostly highway driving, so that won't tire me out and I can get some last-minute hydration in. When I get to the dojo I park in the accessible spot outside the front door in case I dislocate in karate and can't safely walk across the parking lot to a farther space, thereby reducing my fall risk.
After karate I shower and lie right down. If I don't get as much rest as possible I won't be able to work the next day. If I have overdone it on some body part I take care of that part and make a mental note to splint it the next day, or reorganize how I do my day so that it doesn't require that body part. For example, if I have really overused my knee on Monday, it will be a crutches or wheelchair day on Tuesday so that I can do karate on Wednesday. My entire schedule and approach to life is centered around being able to do karate.
Although I do practice karate and have EDS, I make enormous concessions elsewhere in my life to be able to do it. Everybody who practices karate gives up a lot elsewhere in their lives. This is just my story.
Thursday was the Shiai. Saturday was Spirit Training. I barely got through a shower on Friday and I have had to sleep/rest Wednesday night through now to recover from training and competing.
Karate is helping me get healthier and stronger. It just has implications that are unpredictable. Just like physiotherapy it helps my body get better, but I may not be able to do anything but rest until I recover from it.
In the dojo I don't look like I have a disability, so it may become easy to think I don't have one, or to conclude that it's not as bad as I make it out to be. But it's pretty rough, and life outside of the dojo is the authentic picture. I do karate despite these challenges because it is my dream. That's why I love it so much.
The moral of the story is, I practice karate despite having EDS because it makes me so stinkin' happy that it is sometimes my most hopeful reason for living. But I pay enormously in time and prep work to be able to do it. I also pay after in exhaustion and recuperation time, as well as needing to tend to any new injuries or aggravated body parts. It takes focus and dedication, but that's what karate is about.
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