Why I’m unlikely to be very productive.

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(And why, if I am very productive, you might want to let me know to stop it. :-P )

I was in the hospital recently.

Photo on 2011-08-29 at 08.52

[Photo description: Me in a hospital gown in a hospital bed, with a hospital-green wall behind me, and a bunch of assorted cables and stuff behind me.]

Yet another intestinal blockage. Will not give excessive details on that area, since most people have no real desire to hear about crap and lack thereof. May also have had some kind of infection, as my white count was high.

The problem with communicating largely by typing (and using the Internet rather than the phone) is that Skype keeps logs of things you say when you’re delirious, and your friends can torture you with it later. Apparently, among other things, I start randomly advertising for Turpenoid (which I haven’t seen or used since I was about 8 years old). And that’s after I was well enough to start typing things to friends (I’ve got three days before that that have gone almost completely missing, no memory at all other than an all-too-vivid memory of an over-the-top medical procedure, and another of something that had to be a hallucination, and I sent no emails or Skype chats in that time).

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:

Photo on 2011-08-29 at 14.46

[Photo shows a blue plastic robot-like thing with red numbers on the front, next to a table.]

Which I could swear are alive. And which make the most unearthly series of bleeping noises — and when you can hear them going off all over the ward, it’s just not a great way to get a grip on reality. (Even the nurses have problems hearing it over and over.)

For the most part, the care I got was excellent, which is good because I really wasn’t in much state to fight them. (Although in the one instance when they did something I didn’t approve of — a nasogastric tube — I was apparently very adamant that they stop it no later than NOW. Which doesn’t surprise me, I have such a strong objection to things going into various orifices that I can barely give myself treatment for yeast infections, and am shocked — but glad — that I didn’t just yank the tube out. It wasn’t necessary anyway, they managed to clear the blockage through much less invasive means that I won’t go into detail about. The tube is also the only clear memory I have of the first few days, so apparently it made a strong impression.)

So I pretty much couldn’t wait to get home, was even willing to put up with a drive home without a headrest:

Photo on 2011-08-29 at 17.30

[Photo description: Me in a wheelchair van, with my chin resting on my chest because I’d been sitting up too long waiting for discharge.]

When I got in the door, I heard something a lot like this (this was actually taken later, after going out for something and then coming back in again, so her reaction was much stronger than this initially):

Fey meowing when I got home. from Amanda Baggs on Vimeo.

[I don’t have the video captioned, but basically the only sound in the video is my cat making a rather intense and raspy meowing noise over and over, and me doing a mrrrrr? sound back sometimes. The video part is basically just me coming in a door and then it getting really dark.]

This, too, is not right after I got home, but is the first time I got on the bed:

Fey welcoming me home from the hospital from Amanda Baggs on Vimeo.

[The only real sound in the video is me yelling “EYYY!” when she bites me. The video itself involves Fey walking back and forth over my lap and rubbing my arms and face over and over. And then eventually biting, because she does the rub-purr-rub-purr-CHOMP maneuver when she’s glad I’m home but mad I left in the first place.]

She didn’t take her eyes off me for days:

Photo on 2011-08-30 at 12.25

[Photo description: Fey staring at me. There’s an air conditioner duct that she’s got her head poking over the top of, and her paws on either side of her face, Kilroy-style.]

So… basically, my bowels are doing much better. But I’m experiencing alarmingly similar symptoms to the ones I did last time I got out of the hospital for something like this. Which involve painful lymph glands, a mild sore throat, and total exhaustion. Which is why it’s taken me so long to write anything. And now I’m mostly writing it so that I have a way to explain the fact that I might not be up to a whole lot lately. Last time this happened, I paid no attention to what my body needed, proceeded to wear myself out several times over, and ended up with a health crash I’ve never fully gotten over since then (and which during the actual crash itself, involved the inability to turn over in bed without help). Needless to say, while I could survive such a thing again, I’m not anxious to try, so I’m obeying all my worried friends and resting.

Plus, this recent hospitalization brought home exactly how much my own carelessness about my health (I got into this by forgetting laxative several days in a row when I already knew I was dealing with a potential blockage) affects other people, not just me. So I’m not willing to continue to be as careless as I used to be. I had a lot of people worried, and one friend seriously freaking out the whole time, and for good reason — the last hospitalization for a blockage was bad, but this one was nearly twice as long, and the amount of time I couldn’t remember this time is equal to the amount of time of my entire hospital stay last time. So I’m trying to be a hell of a lot more careful, for other people’s sake as much as my own. It’s weird how it’s easier to do something for other people than for oneself.

So anyway, if I am not doing as much, that’s why. I feel pretty much like every particle in my body is individually trying to lie down and go to sleep (or to get me to do the same). And this time I’m going to listen, instead of trying to get involved in fifty projects at once, which (I’m told) is apparently my usual reaction to situations like this. And that goes for whether this is my body’s response to getting seriously ill, or whether it’s some bug I picked up in the hospital. (My best guess is it’s a reaction to something about the blockage, since it’s so identical to last time, but I’m being tested for everything under the sun just in case, since it’d be bad to miss an infection or something, and I already had four kinds of infections this summer. Yeah it’s been one of those few months.)

Oh and since most people have trouble not confusing illness with unhappiness, I’m actually fairly happy, I’m just physically exhausted. So don’t worry about me on that count.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

18 responses »

  1. Well, we’re glad you’re back home……….

    You have gotten good advice from your friends………

    Projects can wait…….for the most part. If something is really, really urgent perhaps you can have a friend help…….in whatever way you think of………

    But your health is definitely your most important project right now. Better to be more productive on that front than anything else. Without your health, everything else is moot.

    Best wishes for recovery……..

    all of us

  2. Take care of yourself.

    I’ve never had an intestinal blockage, but a family member has. I hope neither you nor he ever goes through that again.

    (The weird machines and weird noises are one of the reasons I hate being an inpatient.)

  3. Well first of all, please do rest…and then rest some more.

    It has to feel surreal having entire days missing from your memory. I heard second hand about some of the ramblings you made while delirious from the toxins and you did string some odd words together that despite the seriousness of your situation were frankly more then just humorous.

    As for your video of Fey, I forgot the dogs were in the house and they set to barking to let me know we had an intruder when they heard her meow! I used my line “It is just on T.V.” which caused them to settle down again. I can understand Fey’s not letting you out of her sight. Last time she did that you disappeared for days.

    Fey certainly is very straight forward with her emotions and the fact there was much purring and meowing and rubbing showed her strongest emotion was gladness for your being home and unbridled affection. That little bite thrown in signaling annoyance that you left in the first place hopefully released completely and you are absolved of this act of sudden desertion!

    We are so relieved you are home! Healing thoughts, Mom

  4. Might want to check out gutsense.org and marksdailyapple.com. I don’t know how much of the stuff could work for you, but it’s worth reading.

  5. Thanks but my problem isn’t so much that I don’t have meds that work for me, as that I was getting lazy and forgetting to track bowel movements and adjust my meds accordingly. I won’t forget that again in a hurry.

  6. One thing I remember…….is that when we were living in our own apartment in Florida with our cat Dennis, we noticed that after he figured out that he’d be living there with us regularly, he started to eat when we ate. When this behavior became a daily routine for him, we started using him as a reminder to eat also. He had taken the next step of extrapolating the time of our eating and making that a part of his “schedule,”, if you will.

    Now it’s different because he is living at our parents’ home……no cats allowed where we are right now, that will hopefully change next year.

    Perhaps you could use Fey as a reminder, Amanda?

    We also taught Dennis to visit his litterbox “upon request”……..when we’re home, we like him to sleep in our room if he wants……..which is up two flights of stairs from his toilet…….and we’d rather he use the restroom before we go to bed……have to keep door closed because he might otherwise get into mischief in the house…….so

    Even if he doesn’t end up going, after two or three requests he will usually go to the litterbox to humor us……

    Ivan

  7. 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.

  8. 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.

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

  10. 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).

  11. 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.

    • 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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

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