Tuesday, December 7
Early this morning, I received a response from Janice to yesterday’s diary post about the weirdness of the coat, suggesting that I can be operating on the parasympathetic continuum, even though I can hardly walk and symptoms slip around all the time. When I ask my Friend if I am on pause, she answers with a very strong NO, and has done so for months, even when I can barely function. I’ve assumed that meant my body is in repair mode, or rebuilding after a long and calamitous war, so is not firing on all cylinders (Dad was a mechanic).
But there was still a hole there that wants to be filled. Knowing that I can be on the parasympathetic continuum while experiencing the effects of insufficient dopamine distribution somehow fills that hole and is significant to my repair process. I believe that has been my dominant state for about a month. My further speculation leads me to the possibility that after the hospital (August, September, October) my daily walk involved splinting atrophied leg muscles against strong ones until that became untenable and I experienced a crash.
She responded “here’s the deal – did you read about how the brain, when it starts using dopamine for movement, might suddenly ‘run out’ ? and suddenly, you just crumple. it’s not that the rigidity returns, it’s that you’ve just run out of neurotransmitter, even though you’re still in parasympathetic mode.” She goes on: “if your muscle response time is slower, your ability to balance will be slower. if your muscles are getting limp, their response time might be affected. however, there should be some times during the day when you have a spurt of dopamine-driven movement, and during these times your balance should be just fine.”
Yeah, limp. Limpness is a recovery symptom I’ve experienced before, in fact I’ve thought my legs to be extremely limp, even super limp. I knew not of what I spoke! This, me, today, this is limp! Limp to the twelfth power. Limp beyond all imagining. I am encouraged but I also hope that I move along to the next thing, stat!
Wednesday, December 8
Last night I turned over in bed many times without the usual screaming and cursing. This morning movement was fairly standard – that is, restricted but not terribly uncomfortable – but by the time we left the house I was essentially a cripple. I even chose to wear a down jacket instead of the peacoat, apparently to no avail. We went to an Alexander session which showed me in bright relief what a web of tension and pain my body has become. It also showed me a way out. We worked hard, and the walk from studio to Roy’s car was a tiny bit less painful than the way in. But both ankles now hurt, even a little bit at rest, though I can’t credit the session on either.
During the morning routine I was treated to a dopamine moment manifest as a feeling of deep well-being and safety.
This is such a strange journey!
Thursday, December 9
Physiotherapists have been telling me to both straighten and bend my knees while walking for years. This morning the penny finally dropped. This afternoon I put in six garage laps before ankles began to hurt, so I may also have discovered the source of pain. I had another Dopamine Moment this morning. There was also hail. There was intense pins and needles in arms and hands.
Friday, December 10
Pins and needles continued from about 11:30. Tasks gobbled up the morning so we didn’t get to walk. I’m getting too adventurous in rolling over in bed, doing what feels natural but I get stuck in positions too awkward to extract myself without considerable vocalization. I think I scared Yuri this morning. I know this because of the way he crept in, like he might find a madman. Understandable.
Around four in the afternoon, my legs got jumpy so I decided to pace the hall using my new insights on knee flexing – when to bend and when to straighten. Walking was hard. Then I called a friend, and talking was hard. Fortunately for my self-esteem, typing is easier, relative to most everything else, which is something.
I guess I am having a “bad day” even though in most situations I don’t believe in bad days. We shall see if I can exercise and if I can, how much it lifts me.
We just came back from walking where we did seven garage laps, more or less in form, and with minimal pain. Things are looking up.
At some point during the afternoon, I seemed to have had a glimpse of what it would be like back on the para/sympathetic continuum; didn’t make it there but there were signs of its approach.
Saturday, December 11
It seems that the right arm has relaxed and the tremor is gone except when there is physical stress in some other part of the body. This has been the case since Wednesday, at least, but I think a bit longer. The right arm has put on a good show before for a few days, so I’ve become averse to recording its fluctuations (I’m foolish enough as it is) but this is acting like the real thing. We shall see. Pins and needles in hands and arms continues to be intense. Walking the garage this morning was physically impossible, Friend says that’s a darkest before dawn model, but gave no idea as to timing or degree. Typing is not too bad; fingers are more lazy than inept.
Candace did yin tui na on my right shoulder this afternoon. When she first put her hands in place, they felt as heavy as the lead blanket dentists used to use for x-rays, I asked her to lighten, but she still didn’t feel any of the twitches or mini-releases associated with the treatment.
The trauma captured there was, I believe, from when I was thrown into a pool before I knew how to swim when I was eight or nine years old, so my body’s first reaction is to feel out of breath and like I am flailing and panicky. When that relaxed after a few minutes, Candace immediately reported that the mini-releases were starting.
The treatment lasted for an hour, and I drifted asleep. When I woke on my own, the body responded as it always does when I wake from a nap on my own (as opposed to someone or alarm being involved) my arms both shook (distinct from the tremor) then my toes pointed and both legs became super rigid for maybe twenty seconds. This never happens when someone or something wakes me. That is so strange that I have to repeat it.
As a result of the treatment the shoulder feels significantly freer and more open. Because I had not moved beyond the physical threat and emotional discomfort stage previously, I’d avoided having the shoulder held again, but it seemed time to advance, and I’m glad we did.
Sunday, December 12
There was no significant sleep until 05:00, so I asked Yuri to let me be and I slept until 11:00. The reasons for not sleeping were silly, like not being able to fully clear my right nostril which would then make a noise that only I could hear but sounded like a voice, and I would jolt awake in such a way as to assure that I would not sleep again for at least another twenty minutes. As a consequence I paced a lot, mostly in pretty good form, and today walking (as yet untested beyond the apartment) seems to have improved.
Yesterday, someone observed that as of a month or so ago I seemed to be doing so well. “Then it all crashed,” I responded. Today, I have a slightly different perspective. If I have a bad cold that hangs on long enough to make me stir crazy, and I venture out before my health is solid again, I am in danger of provoking a relapse. That is what seems to have happened. I got caught up in a numbers game; walking one, then two, then almost three kilometers a day on shaky legs with uncontrolled posture, pained ankles, and always reaching for more. Then one day about a month ago the legs reached their limit and called a halt. I’m slowly building back with a more aware attitude of posture and form, but when the impatience that caused my overdoing revisits, I see only the backward slide and push responsibility for it onto a mysterious unknown operating beyond my influence.
If that is the case, rest is effective. I did eight garage laps this evening without undue stress or pain.
Monday, December 13
As often happens in the morning, I could only make two laps in the garage before I collapsed, then regardless of how light the exercise, I slept like an overstressed child. Then again, I may have fallen prey to my habit of reaching too far, too fast with yesterday evening’s walk. It may be wise to assume a ceiling of five garage laps until that becomes an easy norm.
I spent the afternoon writing letters and submitting plays. That involved a lot of typing. And typing today has been as if I were in the back seat of an old Studebaker with no suspension on a washed out dirt road. But I lost myself in the task at hand, so there was a minimum of swearing.
True to my new philosophy, I called halt to the evening stroll after five garage laps. The first three laps were surprisingly quiet. I still feel like I could go to bed and sleep.