Comments on: Why I’m unlikely to be very productive.

By: Chris

Chris — Wed, 14 Sep 2011 12:59:55 +0000

Hi Amanda, Glad you are getting back to yourself. It’s so sad to hear that you had to go through all this. My teenager also has some of these issues from time to time and we could not figure out what to do because he would not let us know how he was feeling even though he is verbal. He probably did not recognize it at times and probably felt embarrassed at the same time. But anyway, enough about him…I was wondering if you have had a good endoscopy/colonoscopy and have rulled out things like Celiac Disease or even lactose intolerance. The reason why I ask is that after years of suffering we found out that this was the root cause for his digestive troubles. It was really upsetting to us, because prior to that the doctors just dismissed it due to his Autism. If they had not been so quick to assume, it would have saved him many years of suffering. Part of it may have been because these tests are invasive and they would create a lot of anxiety for him….or anybody “on th spectrum”…Well, you probably already had these tests done, but I hope you don’t mind that I asked.
Chris

By: apples

apples — Wed, 14 Sep 2011 02:35:54 +0000

Glad you’re doing better and out of hospital. Hope your recovery continues to go smoothly.
My intestinal issue is the opposite of yours (won’t go into detail, but can lead to dehydration, malnutrition and often causes malabsorption) and I too have a tendency to screw up my meds.

Similarly, part of the meds issue for me is due to laziness, and some it is plain old getting ‘jumbled up’

Hospitals can be problematic for me too – they don’t go well with severe hyperacusis, although last time I had a hospital stay I was on so much morphine I didn’t much care and was hallucinating all sorts of things!

Anyway, glad you’re on the path to recovery. Make sure you get plenty of rest.

By: urocyon

urocyon — Mon, 12 Sep 2011 13:26:17 +0000

So sorry you ran into problems, but glad it’s improving. Please do take care of yourself–lot easier said than done, I know.

The video of Fey welcoming you home made me smile. She reminds me again of Bungee, and it’s good you found each other.

Also — hospitals have to be one of the worst places to be delirious. There are too many weird sounds, sights, and smells that don’t exist practically anywhere else, and there’s an overall intensity to the place due to the amount of intense things that happen there. Once I do start remembering things, I start remembering these things:

Ye gods, yes. :( The worst few days I’ve had in some ways were in an ICU after surgery, with funky reactions to general anesthesia. (Mostly cooling blanket level fever with delirium–this has happened every time, but thank goodness an anesthesiologist was familiar with it that time and suggested a different mix if needed again!) When you’re already inclined to view hospital environments as threatening, well… I particularly had to comment on that because the looming beeping monitor thing freaked me out then too.

Here’s hoping they find the infection and get it taken care of quickly.

By: Amanda

Amanda — Sun, 11 Sep 2011 21:31:33 +0000

sanabituranima: I think a lot of it has to do with the fact that I'd rather be actually doing things. The friends who are helping out with this are continually having to remind me not to do various things for awhile. And I have several projects I was trying to work on before this, and they all have to go on hold. And then, the parts that don't have to do with resting, require a lot of concentration. And it's just so much easier to totally ignore my body (especially given that I have a shaky connection to it anyway) and go on being (in the words of a friend) "the least productive workaholic I've ever met", than to actually bother to take care of something that is hard to even notice in many ways anyway. But at some point I guess I realized that if I kept doing this it would kill me (and even if it didn't, it would terrify people around me), and I'm not really in the mood to die yet so I'd better do something right. (Plus, for whatever reason, it's way easier to do something because not doing it would hurt other people, than it is to do it because not doing it would hurt me. I asked someone else why it's like that and she said it's usually pretty ingrained in members of our species.) The really hard part at the moment is remembering to do detailed checks of how my body is feeling, but I guess I'll be learning a lot more about body awareness than I ever expected to. At one point recently it was kind of a little scary... because I was doing all these things by running on adrenaline, and a friend got me to stop and check my body, and once I managed to notice it, it was really run down in a scary way it doesn't normally get. And that was all being masked by the adrenaline (which was in turn causing more of the problem by wearing my body down). I don't want to know what would've happened if she didn't get me to stop and check, because by that point I was seriously exhausted in a way that's generally unfamiliar to me even as someone with serious stamina issues. At least it got me to take this all more seriously, and to make me aware of how unaware I am of my body most of the time. Someone else: I deleted your last two comments because they were crossing a line, privacy-wise. Multiple lines, actually. And answering them would cross even more.

By: sanabituranima

sanabituranima — Sun, 11 Sep 2011 20:36:05 +0000

In reply to Amanda. Well done for making the decision to take care of yourself. It's weird how it's a hard decision to make. I'd think it would be the other way round, but for many (most? all?) people, it isn't.

By: Amanda

Amanda — Sat, 10 Sep 2011 21:19:20 +0000

Oh and last time this happened it didn’t help that the whole time it (the post-hospitalization exhaustion and health crash) was going on, I was trying to maintain an online façade that nothing was wrong — based on a fear of looking vulnerable in public. So I wore myself out trying to post to message boards as if nothing at all was wrong. Thereby making myself far more physically vulnerable than honesty would have done. This time I know better, so I’m actually saying something and not trying so hard to pass as if nothing was happening. And I think that’s already making a difference.

By: Amanda

Amanda — Sat, 10 Sep 2011 21:00:22 +0000

Thanks. As of last night I noticed that my awareness of my own exhaustion was being blocked the same way my awareness of pain often gets blocked. And the true level of exhaustion is bad. So I really shouldn’t be doing anything remotely strenuous or stressful (adrenaline really doesn’t help matters). And I need to regularly actually put effort into checking my body to see how it’s feeling — a difficult task at the best of times, even when I’m concentrating. But since I know how dangerous it is to ignore things like this, I’ll try to make a way (and I have a very perceptive friend — she can perceive my pain and exhaustion levels just through reading the patterns of words in my writing — who is trying to help me keep track of my body too).

By: Riel & S^Amorpha

Riel & S^Amorpha — Fri, 09 Sep 2011 23:38:35 +0000

(also, not sure if our comment got caught in the spamfilter? usually it shows up for us as screened right after posting, so.)

By: Riel & S^Amorpha

Riel & S^Amorpha — Fri, 09 Sep 2011 23:37:35 +0000

Nothing to give in the way of advice here, since we figure you know how your body tends to work better than we possibly could (though we can sympathize with getting lazy about taking pills you really actually need because in the moment it’s just so much easier to sleep, although ours don’t lead to medical consequences as severe). Just glad to hear that you know what caused it and how to prevent it in future and have people keeping an eye on you, and we’ll let you know if it looks like you’re trying to do too many things.

By: Amanda

Amanda — Fri, 09 Sep 2011 16:55:45 +0000

I have enough staffing that I don't really need to set up reminders, I just need the people who are around me every day to make sure I drink the one cup of laxative per shift that I'm supposed to, and make sure that I'm actually going to the bathroom every day. None of them even knew me during my last hospitalization, so they weren't aware how bad it could get -- they're used to me coming home if I end up in the emergency room (even for quite severe problems). And I got lazy in looking for it myself (and lazy is the word for it, I already knew I was working on a blockage, I knew I wasn't getting them, and I decided sleeping was more important than laxative). I think now that they've seen what I look like when I don't even remember what I was like at the time, they're much more apt to make sure this doesn't happen again.