Monday, August 25, 2014


I realized, tonight, that I have been a tad austere when it came to my milk rationing.  In a day and a half, I can go out and fill up my shelf once more.  So, I promptly downed a tall glass of ice cold milk. Seriously, I can drain a glass before I make it back from the kitchen to the GREEN chair.  Not that I quite did that.  There was about a third of the glass left by the time I entered the living room.  And I took a break from my dairy love fest to play my turn in four of the Nummi games I have going with strangers.  Still, it seems the milk is over almost before I have finishing thinking of the comfort drinking a glass will bring me.

What doesn't speed by is the cost of drinking milk.  And, no, before you ask, I am not interested in drinking hot or steamed milk.  BLAH!  The cost of drinking milk, for me, is oft hours and hours and hours of battling a chill.  Such a poor word that.  Battling what I think of as "dyshypothermia."

Waves of chills crash over me, one after another after another.  My goosebumps have goosebumps and my skin becomes too icy to touch.  My teeth chatter and my body becomes wracked with tremors.  I try to keep as much of my skin as possible in contact with my clothing, because the merest bit of air turns the chills into a deep freeze.  I huddle beneath blankets, wool, cotton, and electric.  I have a heating pad on my mid-section and try to suck as much body warmth from Amos as possible.  Only, my beloved fluff ball cares not for the touch of my cold hands at such times.  I don't blame him.  Neither can I bear my own touch.

Wave upon wave of chills that encompass my entire being.  My nose and ear tips feel as if I've been standing in a snow storm.  My feet turn blue, my fingers white.  And I bewail the misery of my plight to the empty room around me.  It is difficult to think or read or even watch television.  I am too bloody cold.

In the dog days of summer that have descended upon Fort Wayne.

Who knows when it will end.  I don't.  And yet the next time I long for the deep and abiding comfort that is downing a glass of milk I will not hesitate.

It is not just milk.  Anything cold that I consume, especially drinks and ice cream.  My neighbor asked why it it has been so long since I bought Blue Bell.  In part, it is because I would rather pay the piper for drinking milk than eating Blue Bell.  Blue Bell is tastiness sublime.  Milk is a hug, a moment where the world is ever so slightly less the battlefield.  Even.  Even knowing fight that follow.

With the electric blanket on 10, the heating pad on high, the foot warmer on high, four or five layers of clothes, and four or five layers of covers, the cold remains, trying to consuming me.  It does not help matters that. despite the drop in my core body temperature, I still have to lie with my head on ice packs.  Normally, I barely notice the literal freezing of my scalp.  But, when I am in the throes of "dyshoperthermia," the cold of the icepacks radiates from my head to my toes.  Counter waves of chills that crash against the ones already racing through me.

You would think that racing to the shower to blanch myself would be in order.  But, as soothing as having scalding hot water pouring over my body is at such times, showers are too dangerous.  For one, I am still susceptible to heat and would weaken and grow disorientated.  And once out of the water I would be worse off.  Not matter how quickly I try to dry off and cover my skin as much as possible again, the total exposure makes the "dyshypothermia" far, far, far worse.  The times I have tried to heat myself back up this way, I half expect

No matter how many times I try to write of this aspect of dysautonomia, this dysfunction in my body, the words fail me.  They barely touch the breadth and depth of the suffering.  In regular hypothermia, your body will fall asleep (and you will die), but until I regain control of my body temperature, it is impossible for me to sleep.  Instead of being shocked with electricity, I am being shocked with cold.  It is as if I have my finger stuck in a socket and cannot pull it out.  All I can do is to try and protect myself as much as possible, especially my feet, and endure.

Today was a good nausea day.  I endured without resorting to Zofran, Gingerale, or saltines.  I have been inexplicably unable to keep my blood sugar up for a week or so.  In fact, this afternoon I forwent the glucose pills and popped a Forgotten Cookie in my mouth.  And I have been battling constant headaches again, which I fear are because my hair has fully grown out from that rather disastrous mullet.  Yet I was just thinking how great this day was, how nice it was to have a bit of a break from the nausea that, too, is truly ineffable and is something for which all I can do is try and protect myself as much as possible and endure.

I am so cold.
Never would I have imagined what those words would come to mean to me.
I am so bloody cold.

Would that it were someone were here to beg for mercy for me.  Although I wonder, what mercy would that be?  What would I long for?  Not healing, I think.  Such thoughts simply do not enter my mind.  There is no cure, not even treatment.  Strength to endure?  I guess that would be mercy.  Only ... what would that strength be??

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