The WHAT'S NEW! page contains the latest medical updates. If you're wondering how I'm going as far as health is concerned, this is the place to start. Latest: Wed 27 Nov 2013. 7.20AM

Sunday, April 1, 2012

Knotty problem and the Graduation Duck

It's maybe 4.30 am or so and thoughts and ideas have been floating around in my head, many of them complete pieces I want to commit to file. I begin typing keywords and phrases because I know as long as I do that I have a good chance of remembering enough later to link discrete things together.

Then I feel the right calf muscle starting to cramp and I work the ankle and the foot into a better position, and am now fully awake. I realise to my chagrin that I've been dreaming, and all that effort in typing those keywords and phrases was part of the dream itself.

Surely my right hand should work for typing in a dream, but no. I distinctly remember tapping away with one hand, as usual.

I feel betrayed. My body is cold. Armidale autumn, with the ending of daylight saving through the night, is well and truly with us.

I don't mind the leg cramping. That's started to happen only since we've been walking regularly and I've been doing particular exercises to increase flexibility of ... well, as many muscles and joints as possible. It's actually a sign of strength in the leg, and that I need to drink water.

I must get up. The leg cramps have gone but I'm awake now, and I really want to write down something while stray bits of the memories remain in my mind. The ones with no associations have slipped away.

I spoke before about that odd sensation of a thought collapsing, or disappearing into nothingness like water into dry sand on the beach.

The beach. Nothing is more beautiful than the white beaches directly down the big hill from us, with their fine sand and the salty air and the blue-green ocean with the constant rumble of the waves.

Rumble isn't right. What's the word I want? It won't come. Is there a word to really describe that sound of that rolling, restless, rustling constancy?

Life's a beach.

I splash water on my face. Months ago, I had to use just one hand to wash my face at the bathroom sink. The other arm would just hang down, as if the bone had been surgically removed.

It's very inefficient – try it sometime, washing your face with just one hand. But I've been forcing that right hand to mirror the left, and do its bit in the washing process as best it can.

Still, I can't get them together enough to make that two-handed cupping we use when they're both working normally, and as I try to get it to my face, the water falls out between them. But it's better now than it was, and if I focus hard, it will improve by fractions, as it's been doing. Sometimes I get water right up to my face. Not often.

The cord on my tracksuit bottom is too loose. Luckily it's still tied in a half bow, so I can undo the knot and begin the tricky task of tying a new tighter bow. At least I'm better now at tying knots than I was, because I do have some strength just as long as I hold the right hand at the exact angle for the fingers, and if I can just get right and left hands to cooperate....

They usually do – enough to get the job done. Today, I pull the knot tight and the end of the cord slips through. Now I have a tight reef knot in the cord, and I'm going to have to persuade that right hand to help the left in unpicking it. How could the knot get that tight? I work at it for a while and little by little it loosens enough to start again.

Start again. How many times in how many ways have I had to start again over the past couple of years? This time, I get the bow tied as I want to with little trouble. All the fooling around with the other knot has made the fingers more flexible. It's an ill wind....

Don't look up at the screen now, or I'll see things that need to be changed, like twenty typos because the left hand hasn't hit some keys with enough strength. Ignore them. They can be fixed, often with something as simple as a right click on the word to suggest the one I wanted. That has odd results sometimes, like auto-correct on a phone, it seems.

The Graduation Duck
I pick up the squishy yellow Graduation Duck and squeeze it constantly with my right hand. No, I won't try to explain the Grad Duck, except to say that squeezing it reduces the swelling in the right knuckles and makes the hand more useful.

If I force my right hand down on to my leg while squeezing the Duck, I can do it. But if I lifted the hand so it was up in the air a bit, and unsqueezed the duck, it would go into wild uncontrollable tremors. The hand, not the Duck. Oh, both of them then. You know what I mean.

You wouldn't believe how off the scale those tremors can get. Yet I can squeeze El Ducko really hard, on my leg, and there's no tremor. Holding it very tightly, I can even raise the hand slowly and there's just a little vibration in the hand and wrist. But if I try releasing and then squeezing the hand in the air, it goes off its rocker.

Where was I? Standing in the bathroom, trackie bottom down around my knees, tying one blasted bow, and I've done it this time. Yes! Major win. At least the trackie daks won't fall down.

I'm properly awake now. I look at the right foot and ankle, and see that they look almost normal. It's the walking that helps control that swelling, apart from the daily injection of Clexane, of course.

Oh, I should include the exercises I do next, but I feel too bored with this description to detail each one, you'll be glad to know, so you're spared it. Each exercise has a specific purpose. And one good thing is that the exercises make me warm, which I need to control the right arm tremors when they occur just after I get up on a cold morning and I'm shivery.

No, I won't tell you about the tremors now either, but they are quite interesting. At their most spectacular, the tremors look fake. But the funny thing is, if I want to demonstrate them, they won't come. The arm is as steady as a rock.

These exercises are for strength, balance, flexibility, and coordination. If I start one exercise, my rule is that I do twenty repetitions, no matter what.

Coordination. Would you believe that I had to retrain myself to rotate my trunk in one direction, and my head in the opposite one, while not moving my feet? Go the other way with my body, and my head wants to go the same way. I have to focus very hard to do this simple thing: body swings clockwise, head anti. Body anti-clockwise, head goes into coordination tumult.

I can do it better now.

I pick up the 3 kg weights. My strength right and left side is so uneven, but the right's very slowly catching up. I do a variety of things; upward rowing, crucifix-type pose, using the weights for momentum as I twist them in each hand. I still can't get symmetry; the right wrist just doesn't have that flexibility nor the arm the strength.

Weights is one area where the twenty repetitions doesn't apply. I just do one more rep of something than yesterday, if I can. Otherwise, the same number is OK. Never fewer.

Then I do some 'cool-down' tasks (though I haven't even raised a sweat), and I go to the bathroom and use the electric shaver. It's nice to feel clean shaven, though I usually use a real razor to shave when I shower.

I put on warm clothing and go to the kitchen and drink two glasses of water. If I am thinking of something else, which too often I am, my throat gets it wrong and I am spluttering; the splutters punctuated by cursing.

It's too early to eat so I come here, yes, really here, to the computer, and before I do anything else, start to get these thoughts down. I haven't looked at the ABC News, the RSS newsfeed from elsewhere, checked email, the new Gutenberg releases, FaceBook, Twitter. I have a beautiful book to put on my Gutenblog, about women painters in the last few centuries. It will take ages to format, but I'll enjoy doing it. All these could take forever.

If I had forever. It's been at least ninety minutes I've been typing this, and it's now 7.40 am. I'm going to eat, pop pills and drink Curly Cloud Chinese tea, and come back here, and see if I can make sense of what I just wrote.

You're getting it anyway, and I thank you for sharing my Sunday dawn. The cockatoos in hundreds are shouting at each other as they pass over. I need to write my weekly WHAT'S NEW! and consign the last week to history.

I have written 1447 words today.

So what did you do since about 4.45 am?


  1. Please, my dear friend, add another classification to the little bit down the bottom where I can tick my appreciation of your stories. "Entertaining" isn't the right word - "inspiring" would be better. Now, just to make you feel better - I can't wist my torso one way and my head the other! Even when I concentrate I still can't do it! So you are better than I am!! How's that for something, eh? And as for "crucifix" my ares .. well, I can't. Not one little bit. So there. Weights .. I'm lucky to be able to get my right arm (which is /my/ good one) to lift a slice of bread into the toaster, and you have no idea how many times I've burned my thumb trying to take it out again when it pops up. So .. :razz: Each to his/her own, my dear, each to his/her own. I guess. :-)

    1. Thanks for your kind comments. It does make me feel better to know someone else has my current coordination! What I do re toaster [know that feeling too!] is to take a tissue and grab it by that. Avoids the hot surface most times. Life's littler challenges, huh?

  2. Thank you Denis - again. I know it is not your purpose in relating this very personal account to us, but I can't help but feel overwhelmed by your determination, effort, the sheer bloody-mindedness with which you stubbornly refuse to allow the least outcome but rather demand the highest possible result, with every gram of will and determination. That you are presenting to us a picture of your daily challenges and battles is extraordinary. You are a formidable enemy indeed. Much to think about Denis. Much to give thanks for. Still more to think about.

    1. The enemy is formidable because it's so subtle in itself and a bit like a Black Hole - it can only be perceived by its effects. But right now with care it's been more contained than not as far as the effects go, and there the analogy falls. We just take it as it comes and deal with it as best we can. Not to be determined only adds to the problems, as long as that determination is properly directed - and that's what I was writing about. It's a battle I can't fight on my own. That's my strongest weapon by far – Tracey's absolute determination to achieve the best outcome in all the ways she does.


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