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Archive for November 2nd, 2010

(alternative title: In Which We Discover How Poorly Dysautonomia and Exhaustion Mix)

I have dysautonomia.  I probably specifically have POTS (postural orthostatic tachycardia syndrome).  I say probably because my GP diagnosed me with POTS, but my electrophysiologist (sub-specialty of cardiology) took away that diagnosis and gave me ‘some variety of autonomic dysfunction’ instead.  In layman’s terms, dysautonomia means that you have some variety of dysfunction of the autonomic nervous system.  Your autonomic nervous system regulates everything involuntary in your body – heartbeat, blood pressure, digestion, goosebumps, sweating, pupil dialation, and a great many other things.  My primary symptoms are dizziness, collapsing, fainting, random severe sweating, unstable body temperature, and possibly my GI issues.  When you’re having problems, it also affects your ability to think.

The thing about dysautonomia is that it’s affected by a LOT of things.  Chemicals like caffeine and alcohol.  The amount of food in your GI system (and where said food is).  Temperature.  Body position (that is, sitting, standing, lying down, bending over).  Emotional or physical stress.  Fatigue.

Oh yes, fatigue.

Thursday and Friday nights, I slept very poorly.  I was having dysautonomia symptoms – sweating heavily, one side of my body very hot, the other side very cold.  Friday night, the boyfriend and I didn’t manage to get my regularly scheduled evening medications into me, which typically means that I don’t get to sleep until much later than usual and sleep very poorly.  I’ve also been in a fair amount of pain ever since I partially dislocated my shoulder early in the week.  And I got either a mild case of food poisoning or I was exposed to something I’m allergic to, which meant I was still feeling ill Thursday night.

So come noon on Sunday, when I finally woke up, I wasn’t feeling all that great.  I just stayed curled up in bed and read for quite a while.  Eventually, though, I wanted to get up.  Among other things, I very badly wanted a shower and clean sheets on the bed, after all the sweating I’d done.

Easier said than done.  I think the only time in my entire life when I’ve been even nearly this dizzy was the worst concussion I’ve had.  Fortunately, I own a shower chair.  Unfortunately, I was having trouble even sitting!  The boyfriend had to move me from bed to bathroom with my arms around his neck and his arms around my waist, taking little baby steps.  I managed the shower by holding on to the back of the shower chair any time I had to lean or twist to get bits of me rinsed off properly.  Toweling off was downright silly, as the boyfriend had to hang on to me so I wouldn’t fall and I had to try to dry myself around him holding me and he tried to keep out of the way of me drying off.  While I was in the shower, the boyfriend kindly changed the sheets on the bed.

I had hoped to stay ‘up’ after the shower, but I was still so dizzy that it was not to be.

I went back to bed and curled up reading.  I eventually realized that I might be able to actually DO something about some of the symptoms.  I had the boyfriend bring me the med I take to raise my blood pressure, a cup of gatorade (which helps a lot, by raising the amount of salt and potassium, which increases fluid retention, which can help raise blood pressure), and a snack (because you can’t take the medication on an empty stomach).  We hoped it would be enough to counter the dizziness…

Yeah, not exactly.

With quite a bit of help, I managed to get downstairs.  I curled up with my book, and ended up progressively less upright on the couch, until I was completely slumped over sideways over the arm of the couch.  I knew I needed to eat, but the idea of food – especially food smells – was absolutely revolting.  The boyfriend warmed up some chicken noodle soup, which had the advantage of being both lighter and less odiferous than our originally planned dinner of steak.

It was around this point that I started getting punchy.  Things were enormously funny, especially the dysfunction of my body.  We had already decided that once I had some food in me, I should go back up to bed.  The hard part was getting me there.

First, the boyfriend had to get me off the couch.  I was less than helpful, as I felt all floppy and dizzy.  He hoisted me up, and then we walked to the foot of the stairs.  I say walked, but really it was baby-steps.  My arms around his neck, his arms around my waist, and little bitty steps to get across the room.

I ended up going up the stairs on all fours, because I couldn’t manage it standing.  A couple of times, my arms kind of went out from under me and I landed on my face and chest on the stairs, which cracked me up.  At the top of the stairs, the boyfriend had to once again hoist me to my feet, where I stood swaying and would have fallen if it weren’t for his grip on me.  More baby-steps to the bedroom, where I flopped on the bed and he undressed me to sleep.

Naturally, a minute or two after being undressed, I realized I needed to pee.  Now, before we got the new housemate, I likely would have just had him walk me there and back naked.  Instead, I pulled a wrap around me and we went back down the hallway to the bathroom.  Going down the narrow hallway, I can hold on to the railing around the stairs and the wall and usually keep my balance that way, even if I’m terribly busy.  Not so Sunday night.  My arm on the wall side kind of folded up, so I bounced off the wall and ended up giggling quite badly.  We ended up going back to baby-steps to get down the hallway.

The boyfriend had to pull me up to get me off the toilet after I’d gone to the bathroom.  Baby-steps back to the bedroom, where I tried to crawl onto the bed and my arms went out from under me so I landed on my face and I started with the giggles again.  After a fair amount of flailing and laughing, I finally managed to get myself situated on the bed.

In retrospect, it’s a little scary to be so completely out of control of your body and your mind.  As it’s part of one of my conditions, I suppose I ought to get used to it.  But believe me, that won’t make me like it!

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