Sunday, October 31, 2010

A Day in the Life, part 1

Most people count their day as beginning when they wake up in the morning. It doesn't work like that for TI's.

The days run together because we very often don't sleep at night. We spend our days longing for the sweet relief of pain that sleep would bring. We spend our nights writhing in pain on beds that seem unyielding, full of glass shards, touched by hoar-frost or seared by some unseen volcanic steam vent.

Undedected exposures surface like gouls and boogeymen from under the bed, to rend us from our rare moments of hard-won unconsciousness. They pounce upon are prostrate bodies and sink their claws deep within our flesh and brains. Suddenly, and with violence, we are forced back into the reality of our railing flesh. Our throbbing, injured, sleep-deprived minds struggle to make sense of the cacophony of sensations that impale us. Which body part is screaming loudest?

Those, lucky enough to have survived for any length of time develop the ability to "sleep" (I say  that tongue in cheek. It is not restful sleep. It's rarely even REM sleep. It is unconsciousness.) through all but the most indescribable  pain. They wake to heart attack, toxic encephalopathy- both brain and organ, or respiratory distress. They wake to inexpressible interstitial cystitis - feels like glass shards shredding your bladder. Many TI's experience this all night long. Thankfully not me, most nights.

When the demons strike and I'm thrust into awareness by chest and back pain so intense I cannot breathe, I stumble from the bed and claw my way to the kitchen in desperate search of relief. Pain like this, I've come to relate to toxin induced intermittent porphyria. It is life threatening. If unchecked, it stops the heart by compression. The pain feels as though my ribcage is being ripped apart by the inflatable jaws of life that EMTs use to uncompress a car. Or more graphically, as though being torn apart by elephants; Some unseen hand is repeatedly stabbing me with an ice-pick, in my sternum and spine and leveraging them apart.

Foam erupts from my stomach. If I had less control, I would be foaming at the mouth. I spit this out, into every sink or can that I pass en route. I'm stumbling through the dark because the light hurts my eyes. Even the dim lights that exist through out the house, from various appliances. They cast their macabre luminescence on my well worn path, and I am squinting from the pain they invoke.  I'm staggering like a drunken fool, ricocheting of walls and furniture. This is ataxia, another gift of toxic exposure. I've experienced it enough, I execute what I  'humorously' call "controlled ataxia." This erratic flight is punctuated by the aforementioned detours to dispel the foam.

The foam is caused by incomplete porphyrin rings dumping into my stomach. They are toxic in their in-completed state. They are incomplete because I used up my glutathione, due to toxic exposure. My own vicious circle. The toxins created by the in-completed rings cause all the other internal organs to swell. I know all this; its stored away in my brain. It's this critical knowledge that drives me to the kitchen and is the rationale for my destination. The pain is screaming, screaming! I can hardly think, I can barely stand. My legs feel as though they are turning in to the clothe legs of a ragdoll.

I arrive at the kitchen, I must collect all the necessary ingredients and equipment for the cure. ~ Some of you must be wondering why I didn't wake my husband and get him to do this for me. I realize that unless you've experience something similar to this, it must be difficult to understand. Number one, this happens so often, one of us needs to get their sleep. One of us must continue to function or everything, and I mean everything will come apart. The other equally important aspect of this is that waiting for the cure takes indescribably longer than doing it myself. While physically there is no difference in the time, psychologically its huge. If I am doing something, it helps me to survive the pain.

Still staggering and by this time moaning, with tears steaming down my face I collect everything I need. This is the cure that I developed through research, trial  and Ron's brilliant insight. I'm making, of all things, eggnog, in the middle of the night.

You see, hospitals treat this condition with IV glucose. Unfortunately, the exposures I'd get from an EMT and hospital experience, in this state of glutathione deprivation,  would be too much and kill me. And IV Glucose itself contains preservatives, i.e. toxins. Research tells me that glucose is sugar. Trial has shown me that oral sugars alone aren't enough to squelch a massive attack. They will work on minor attacks, and it only necessitates a teaspoon of honey, maple syrup of molases. I've tried sugars and fat, like milk or live cream cheese - probiotics. These work for mid-range attacks. It's not enough for the massive attack that catches you unaware. During one of these experiences I asked my husband, "Ron, what breaks up foam?" And his reply, from years of meringue pie making was "Egg yolk. If you get any yolk in your whites they won't whip." Hence, eggnog.

So there I am, gathering sugar, milk and eggs; moaning and swaying like a banshee, arms jerking, knees and hips buckling. I fumble for the pan, a spoon a small bowl, a cup. They clatter on the counter from my unresponsive fingers. It takes every last ounce of concentration that I can muster, past the pain, to crack the eggs and slip the yolks. Many times the white, intended for the bowl, splays itself, in all defiance across the counter and trails over the burner. I persevere and collect a number of the priceless orbs within the pan. With the precision of a drunken sot, I sling raw sugar at my target. Unbelievably, I'm working as fast as I can, an eternity... cream or half-n-half are slopped together with the rest. In explicably  my perverse sense of humor injects an image of  "the swedish chef" into my consciousness. Good grief! there's a mess; I'm now stirring like a fiend. Egg white & sugar smoke is billowing and with one hand I turn on the fan. All the while continuing my grotesque dance of pain and unearthly song of sorrow, there, in the eerily lit kitchen, in the recesses of the night.

I'm supposed to cook it until a ring of foam forms around the edge of the pan. Like hell. I can't wait that long. And who cares about salmanella or ecoli at this point. I' sip teaspoons full of the precious liquid, easing in relief. Finally, (and it does work better when it's cooked) I pour a cup, add a little milk to cool and chug it. Gone are the days when I drank real eggnog, for fun. I collect my pan, a hot pad & my cup and retire to the table. I park myself and rock in pain and drink eggnog until the pain diminishes. Sometimes, I will stumble to a more comfortable chair and attempt to rest between doses as I wait for the relief. This is when the level of pain, while less dramatic, is not sufficient to indicate the episode is over. There's no point is going all the way back up stairs or disturbing Ron, if I'm just going to have to do it all again. Many times, Ron comes down on these nights, to check on me. I can only imagine the worry that this gives him.

Finally, when I get enough relief, I check to make sure I've turned off the stove and pause long enough to bring a small amount of order to my blitzed kitchen. If morning hasn't caught me out, I crawl spent, back to bed, hoping that the worst is over. I will myself back to unconsciousness.

When morning finally comes I stagger from my accursed resting place. I cannot sleep in the day light. It beats upon my eye lids and skin like physical blows. I have to get up. I know, it's not fair, to take out the grief and pain on others. I psych myself up every morning to "put on that happy face," to greet those I have the privilege of sharing space with, with a smile or a pleasant greeting. I can't always manage it. I try.

Next time, part 2, Let the protocols begin!

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