10:54am March 16, 2013

So that went kind of badly.

So yesterday at some point after getting home from the doctor, my body responded as if I had just done something really major. Like airplane travel, which I avoid for a reason.

That is, I spent quite awhile with most of my muscles really loose. Except when they were twitching. And I mean twitching the way they do when you stimulate a nerve. Not like tics.

Then there was the breathing. I turned on my bipap because my lungs felt weak, and before I knew it it had lapsed fully into the mode where it keeps pushing huge bunches of air into your lungs over and over to stimulate breathing when it thinks you’ve had central apnea. Translation: My breathing was way too weak and shallow and it noticed.

I Skyped my DPA because I was worried. Normally I manage my body well enough that a near-total collapse like that is rare. And a doctor’s appointment shouldn’t trigger it. She told me not to move or go anywhere for a long time. So I didn’t. And it got better after several hours. Not good better. But less dangerous looking, less twitching, more able to move my body in minor ways without exhausting myself, and less disoriented. (I’d gone delirious off and on during this. I’d even had some disorientation before I got on my ride home.)

She also told me to do absolutely nothing strenuous over the weekend. (For me, that means stay in bed except for the bathroom, and if the bathroom gets too difficult use the bedside commode I got when I first started having symptoms like this years ago. I do have a Hoyer lift too if things get too bad.) And she’s insisting on calling my doctor as soon as the weekend is over.

So that was a big round of WTF. All we can figure is that the hospital wore me down as it usually does. Then the moment I started getting any energy back at all, I aspirated and got a moderately bad chest infection, then caught a head cold as well, and the antibiotics for the chest infections always wear me out themselves. So I’m running dangerously low on energy and my body is noticing and reacting to that. Even before I left for the doctor my lungs were a little weak, but not like after I got home.

Now I have to avoid overtaxing… well, anything. Sometimes my body frightens me. And I’ve been especially frightened of the trend lately of every time I get run down and try to replenish my energy stores, something comes along to deplete them even more. It’s a frustrating and scary pattern.

Another thing not helping is my gut being so out of whack that I’m only taking in 500 calories a day of Ensure, and even that makes me feel nauseated each time I drink it.

Thank you, body, for developing several conditions that conflict with each other.

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