Zooming In On My Progress

Online learning is getting to me. In karate tonight over Zoom I tried Sepai kata for the first time. I miss my dojo. It'll be interesting to see how my body tolerates karate with no port and overall reduced activity after the pandemic ends. I look forward to building back up because looking back won't do me any good.

I've been in physiotherapy for a year and a half now since sepsis ended. I've been out of the dojo since before the pandemic hit the United States, where I live.

Learning karate online has been a lot of fun because it's different and I get different things out of it. I can turn the volume way up on my Sensei's voice, for instance, whereas in the dojo I'm almost totally deaf. Learning online I can write notes down and scribble out my questions and their answers. I can rest, add a fan, hydrate, and manage blackouts more easily. The cats are distracting but that's only because I want them to meet my dojo family.

It's frightening that my body has deconditioned in so many ways because of sepsis. My muscle memory is carrying me further than my actual memory in some cases, and in other cases I'm choked up from drawing a blank.

My Sensei is extremely generous with my schedule and my abilities. He has things he wants for me and I have things I want for myself. At the end of the day we're glad to be alive and we have faith that this is the foundation for anything else we can imagine to come true. :)

Sepai, though, which is thought of as the oldest kata, has a lot of moves in it that are new to me. It looks like Sepai bunkai might be easier to perform than the kata itself (at least, kihon bunkai).

I'm frustrated most moments of the day with the pain, which is a lot worse, a lot sooner. Pain control in the U.S. is a strange racket. With Ehlers-Danlos Syndrome it is unrealistic to expect that one may ever be completely out of pain. But it is realistic to expect that I can learn to defend myself. I don't need every kata to be lovely. I don't need every bunkai to work. I need to practice and ingrain a few solid techniques that will work for me in different situations against different types of people. I choose to see my life as worth defending. There are many people in my life I wish saw themselves that way, but I can only control myself and invite others to join me in the adventure, in the work. And boy, is it work.

Eventually, everyone gets seasoned at working toward or fighting for something, so long as we do not give up and check out. And even that is another type of fight altogether worth besting.

Physiotherapy-Do

Physiotherapy (PT) has its methods. It takes time and commitment. It takes energy and resources. It's for a better overall sense of being. In that sense it is just like karate-do, another way of being. It's hard to walk both paths at once because my energy is limited, so I've been foregoing karate in order to repair my body at PT with that much more focus and efficacy. When I pushed myself to do both I felt like I was working against myself because I was too sore and exhausted, and I was getting weaker from doing too much. (I do not enjoy admitting this.)

After physiotherapy today I had to sit in the parking lot to collect my emotions. My physical therapist is so knowledgeable, so humble, and so unafraid to try to help, that I get overwhelmed by finally having a place to go where I can get relief. (I get even a little more overwhelmed to think of how few EDSers get this far.)

Thanks to my PT's help, I take less medicine for pain. I am getting through more of a day without needing a major rest period. I'm not throwing up every five minutes. I'm passing out less often, and less severely. I'm able to hold my own head up without a brace more often.

Regular access to competent physiotherapy is helping me get ahead of my pain. He not only helps me understand what's happening, but he challenges me to think through why it is happening. Then, he gives me options for what to do about it, and I am 100% included in my own care plan.

My PT meets me where I am in managing my symptoms. By that, I mean that he genuinely listens to my confusion and frustration, which gives me space to work through the emotions that need care on the way back to logic. It's a holistic approach, invaluable to a "PT lifer" like me.

I look forward to physiotherapy because it's where I go to get better. Today I was anxious because I knew I was going to be able to make it, but I didn't know how much I was going to be able to do since I had been dealing with POTS all morning. I had a "painsplosion" last night, too, which was not helpful. What I did know was that I would be okay, and that I would be in less pain after. I would not be judged as weak and I would not be ridiculed for using dramatic terms to describe my pain because it's so complex a feeling to convey. I knew there would be things to laugh about and that I would have some serious work to sink my teeth into. 

I like working with my PT because he is a natural teacher like I am. He lifts up everyone around him because he is constantly educating. Patient education is essential to long-term results. I leave with lots of ideas to look up each week. I wish I could stay and take more notes during or after sessions, but I really need to focus on my body so I can get back to karate. That means I don't get to spend as much time in my head as I'd like, to process it all. With hearing loss it takes extra time to commit verbal exchanges to memory.

Physiotherapy has been a long road for the last several months. It's taken effort, tears, trust, time, and patience. Not once have I left there feeling like I haven't raised the bar; I am always a little better off than I was when I went in, regardless of where I was when we began our work.

Because I'm able to get this care, in able to stay employed. I'm able to earn a living wage, pay my bills, contribute to the economy, and even make a few modest donations here and there. Ehlers-Danlos Syndrome costs a fortune to manage, even with Employed Individuals with Disabilities Medicaid buy-in to cover my insurance copays. A significant portion of my wages goes into my care. But at least I'm getting adequate care now, which is especially true with having found a qualified and competent provider.

Last year was a rough year for my health. This year I'm going to keep working on improving myself. I will work to remember that I can only do one thing at a time, and I will try not to work against myself.

I'm so grateful that the trend is upward that my eyes are leaking. You could fill a city with the number of people who are a part of my progress. If we could measure compassion in raindrops I'd need an ark!

The foci of our work this time around in PT has been on shoulder stabilization, stabilizing and integrating the paraspinals, improving vestibular resilience, resisting syncope and recovering sooner, and a few other odds and ends.

I am so eager to get back to karate, I must think about it at least 20 hours a day. But I don't want to overdo it and end up injured again because I'm working hard on PT to come back from a really harsh year. Every day that I don't go to karate I have to resist kicking myself. But I'm trying to be patient with myself because I still study and I still practice at home, which has value. My dojo always welcomes me to try everything I think I can do. But I think I'm doing the right thing to let myself recover. It's so hard to not go.

I'm so very grateful. How I wish I could give this experience to others who desperately need better care and better results. Maybe by writing it up, others will know what to expect, and they will know to aim for a higher level of care.

Be well.

Lessons Learning

Karate is where I make peace with my body. I learn to protect it, to discover it, and best of all, to use it.

I feel like I got hit by a truck. Thank God I can work from home. I have barely gotten splinted and meds started, though I woke up at 6:30. Breakfast is sitting next to me, cold. I'm determined to meet all my goals for work today, and to care for myself so well that I get through karate tonight. But man, it's a rough start. Maybe a break to blog will settle me down.

Perhaps sensitive to my enthusiasm, Sensei has begun to teach me Seiyunchin. A month ago he asked me not to study it because it was not my kata yet at my level. So I focused on Saifa and I'm glad to have him looking out for my progress. I enjoy Saifa a lot, it is my strongest kata! I just got excited.

Well, I got what I wished for, and now that I'm learning Seiyunchin I almost wish I could back up! I can't physically sit in shiko dachi for that long. Same with Sanchin dachi stance. Other parts of my life have taken up time and energy, so I haven't been practicing at home. Not good.

Here's what I need to work on (the way I see it):
-Get through or modify Sanchin kata without passing out, choking, or dislocating my shoulders and knees

-Keep Saifa kata strong, polish my performance

-Straighten out mae geri (front kick) for power and balance

-Condition my feet to withstand a pivot on the ball of my foot for mawashi geri (roundhouse kick). I have no idea how I'll do this because the problem is that my skin is not connected well and I can feel it tearing away from the fascia. Maybe a small hop?

-Continue doing lots of push-ups! Maybe I will be able to do them off of my knees someday if I can condition my hands to withstand the laxity in weight-bearing. I've been following the advice Higaonna-Sensei gave me, to exercise my hands 100 reps in everything I do to strengthen them.

-Don't give up. Even if I have to sit down, throw up, lie down, modify, whatever. Take care of my health needs, and follow my Sensei's instruction to get back to the mat as soon as possible.

Future goals:
-I'd like to learn breakfalls. I am a high fall risk and this would be a great skill. Practicing my stances and  has certainly reduced my falls and even dislocations. But I would still like to be strong in breakfalls.

-Rolling and tumbling. I've only done one somersault, and with a spotter, but I stayed conscious! If I could learn to tuck my head

I predict that if I know I can fall and tumble safely that I will worry less in daily life about blacking out. I already worry a little less because I have my port and karate has helped me get better conditioned to withstand the heat. Ambient temperature changes remain a very complex problem.

The hardest part about passing out is that my memory brings back the awful feelings I endured when I was sickest, before my port. Just before I got my port I was ready to stop treatment and give up on life. I was going into shock at every needle stick, the pain was unbearable, the drugs made me feel awful and I was either sedated or unconscious most of the time. I can't believe I survived that and I thank my lucky stars for everyone who dragged me through it.  The feelings that come up today are much the same, but the intensity of those feelings should be lessening and they aren't lessening. So it hits like a wave and my only option is to drag myself off the mat quietly and choke on the tears while trying not to throw up or fall over. I don't know if that sensation is an emotional remnant or if it's actually happening.

I suspect that it's still actually happening because there is no cure for it. But the fact that it reminds me of more severe times even after I've gotten the proper chemo in place means that the emotional component of dysautonomia is still kicking my butt, and needs care.

When you're sick and no one really knows what to do your mind becomes a bad neighbourhood, not a place to go on your own.  For the last year and a half I've been living like there's no tomorrow because for the prior three years I either wasn't sure there would be a tomorrow, or wouldn't want it if there was one. It took a lot of cognitive management to survive that and I was on overload from how much alone time I had with my thoughts.  Now I look forward to the next day.

Anyway, that's what I'm working on. Karate is where I work on it. Balance is a moving target.

Hot Summer, Hard Lessons

I have had good luck staying conscious most of the time this summer. I only blackout a few times a day, and I can sometimes predict when it will happen so that I don't fall.

I blacked out right at warm-up on Saturday. Bummer! But I did everything I could do, gently, by adapting. I missed a solid forty minutes of instruction, during which time I performed other meaningful tasks to help my dojo. I had tried to lie down, start fluids and elevate my legs to restore my blood pressure, but with three different leg injuries and a cloudy head my mind and emotions were like a bad neighbourhood and I didn't want to spend time there by myself.

I'm not exactly sure what is wrong with my legs, these are pains with which I am not familiar, but they have lingered for a few weeks and several times my legs have dropped out from under me. Most of the time I'm fine, but those occasions really get to me. I'm sad about it because my ability to kick will be set back...again. I'll just get back to it when I can. It will be okay.

Summer is very hard. I'm able to withstand more heat than I could last year but not much more, and not without hypervigilance about hydration, sodium, potassium, and calcium levels. The Nausea is back too, and thank goodness for IV anti-emetics.

Next week is Warrior Week!  Hard training, a shiai (tournament), Spirit Training, grading (for others this time around), and a potluck.  I love this time! But I'll have to be very careful. I want to make it count and do my best, but I think I should be conservative about my participation because one more injury will make it so that I can't function. Right now I can still prepare meals but it is hard to shower and do laundry. I have to sleep a LOT.

When I'm in the dojo I want karateka to know I am as dedicated as they come! But when I'm unwell, and I stop to take care of myself, I still sometimes get this little hint of doubt: "do I really need to stop, or am I just bring lazy or unmotivated?" This doubt is not useful, and no one else in the dojo doubts me, so why would I doubt myself? Well, there are a few reasons. For one, when we are in pain or tired we can get discouraged easily. Two, I have been hugely doubted in the past. Three, karate is technically contraindicated for Ehlers-Danlos Syndrome, which I aim to change with a modified curriculum someday. My Sensei never doubts me. He just says to get back in as soon as I can. This keeps me motivated because I do want to be with my friends in the dojo, not on the side in a personal fight to stay conscious or alive. It's just so dramatic a problem, but I have to take it seriously. If I were not realistic and responsible about my body I would not belong in a dojo, because if I'm not careful I can really get hurt. Such is true of anybody. And on that plane, we are all equal.