as small as a world and as large as alone

1:55pm August 28, 2014

I am completely drained.  (Which, by the way, means not in the mood for anyone’s bullshit.  Just in case anyone has been planning on unleashing bullshit in my direction.)  I’m drained in a way that, as a child, I used to associate with going to the dentist.  Someone made up an explanation that made no sense at all (basically that I must be “reacting to the rubber gloves”, even though I am not allergic to rubber gloves and deliberately, as a kid, stuck them in my mouth in other contexts to test that idea, and, this did not happen, so yeah, not a good explanation).

But today it happened after getting my feeding tube changed.  I did it without any anesthesia this time.  It didn’t hurt or anything.  And it was cool to see it coming out.  The tube gets so much bile and stuff on it that it turns a very dark green color, when it was originally white.  The doctor even showed me how to deactivate the “clover leaf” thing that keeps the tube in place, and then told me never to actually do it.

But now I’m drained.

And I don’t mean ordinary drained.

I mean I can’t concentrate.  I can’t think.  I can’t read.  I can’t rest.  I can’t sleep.  I can’t do anything.  Yet I feel so exhausted I feel like I should at least be able to sleep.  But I’m not.

My guess is that this is how I respond to having orifices invaded, whether it’s my mouth or a hole in my belly.  That it’s some kind of really nasty autistic shutdown or something.

I’m still glad I got to do it without anesthesia.  Anesthesia would cause an even worse drained feeling, from all the drugs they use.

But this is plenty bad in itself.  I feel like lying here with my eyes closed, but even that isn’t enough. There’s no amount of rest that is possibly enough.  Especially because sleep is utterly impossble

Oh also the doctor showed me how he snipped little slits in the end of the j-tube, so that the food would have more than one way to get out, and wouldn’t clog as much.

He seemed alternately grumpy and friendly.  I couldn’t read him, so he made me nervous.

Anyway, my entire body feels completely trashed, I feel drained as hell, and there’s nothing I can do about any of it, so I don’t even know why I’m writing this down or anything.

I actually guess I could see if I’m cortisol-depleted or not by taking a tiny dose of steroids and seeing if that helps?  That might actually explain a few things, like how breathing feels like work.  (I’ve got oxygen on, and my oxygen level is 96, so that’s good.   I’ve been wearing oxygen all day because it was a long walk through the hospital, and I’m still barely over the pneumonia.)

Anyway, off to try stress-dosing.

And don’t pull any bullshit, I’m serious.  When I have no energy, my bullshit tolerance hits an all-time low. 

And right now I’m so tired that… hell, i’ll just take a picture.  There.  That second picture.  That’s me, as I write this, right now.  The third picture is to show you my new tube!!  It’s a brand new tube and it feels like it has a different personality, almost.  It hasn’t got a chance to turn dark mossy green yet, it’s stiff and hard to stick things into, and it’s a tube!  I’m excited, or as excited as I can be with close to absolutely no energy at all.

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