Thank goodness for that instinct.


That instinct was back again this week. I’m pretty sure I’ve written of it before. Despite terrible conscious body awareness, this instinct has popped up to save me more than once. It tells me “There’s something wrong with your body. If you don’t find a way to detect and treat it, you could die or end up in the hospital.” It sounds ominous but it’s not a panicked “OMG I’m going to die AAAAAAACK!!!!”, it’s more like a calm but firm realization.

In the past, it has warned me of things like organ failure, untreated bronchiectasis (treated it’s only a little more dangerous than asthma, untreated it can kill you), and the beginnings of going septic. And this week it popped up two or three times (seemed like twice, but the first time it happened it seemed to be warning me about two separate things).

The first time it popped up recently, I was away at a recreational program. It told me to go home, not even to wait a day, just go home now. The warning seemed to be twofold: Something was going wrong with my lungs, and my body was so out of energy (from being pushed by others, but that’s another story) that I was experiencing symptoms I haven’t experienced since my last major health crash. Between the weakness and the coughing up disgusting colors of phlegm, this seemed pretty obvious, but the warning gave me the extra urgency not to wait overnight.

So I got some antibiotics ordered and went home. By the next day, my brain was actively checking out. By checking out I mean, being technically awake but not conscious of anything, or being aware only of these weird series of images that went by. It had a feel similar to past experiences of delirium, rather than shutdown or something, and during periods of better awareness I became very glad this was happening only in a familiar place among familiar people. And I was able to begin the resting that I badly needed in order to get through this in one piece.

I began to feel a little better the next day. But then, abruptly, things became far worse. I couldn’t get to the bathroom and back without falling or coming close. I sometimes felt like I was going to pass out. And I couldn’t get near food or water. I couldn’t put words to why, I would just try to drink and my head would turn away. And I felt generally cruddy and woozy. And most disturbingly, the instinct was back. It said “There’s something else wrong and this time it’s not your lungs or sinuses but I can’t tell you what it is.” Grrrrrrrr.

I told all this to someone who persuaded me to go to the ER. (Note: I nearly always have to be persuaded. A good friend describes my attitude to that place as “If Amanda got her leg lopped off, she’d be insisting she could bandage it herself rather than go there.” I’ve just got friends who refuse to give in if I say I don’t want to go there. And mostly I’m glad despite my loathing of the place.) The reasoning was that the lack of water alone would make it harder to cough things up, and bronchiectasis makes that hard enough already, and that could spiral downward fast. Plus it wouldn’t be good to pass out alone in my apartment.

Once I got there, the events unfolded in a very strange way. Normally they’ll give me IV fluids for practically no reason at all, but this time (when I was actively saying I was unable to drink) they insisted on testing my urine for dehydration. I was having too much trouble holding onto language to explain a lot of things so someone was with me explaining them. They kept demanding to know why I couldn’t drink, and the person kept telling them that autistic people can have so much trouble describing subjective experiences, that sometimes “I can’t do _____ and I don’t know why” is all you can get, and that you have to really dig and do a lot of tests if you want to find the reason, rather than acting like nothing is wrong because the person can’t name it. I was treated radically differently from my roommate, who was treated with the utmost respect. (This is common for DD people in general, including autistic people.) They even tried to get me to drink water, which is weird as usually when I’ve been given IV fluids I’ve been perfectly capable of drinking but they’d never given me water in a cup. And all I could do was wet my tongue a little and then my head turned away.

Nearly eight hours later, they came back with a way more respectful attitude to me. Why? The urine test just happened to pick up on the fact that I had a UTI. And they now thought that between a urinary tract infection, sinus infection, and lung infection, I might just have a reason to have no appetite. So they then proceeded to give me two bags of IV fluids and a prescription for yet more antibiotics before letting me go.

What scares me is what would have happened if they hadn’t detected the UTI. It’s not like they were even bothering to look for an infection. The information just popped up when they were testing for something else. And while I could tell the problem was somewhere in my torso, that’s a huge area of the body to look through for symptoms. Nothing pointed me in the direction that a UTI would have been in. And this physician’s assistant was not doing what you should do with a sick autistic person (check for all common things that could cause the symptoms). In fact, since my way of communicating my loss of appetite was so unusual, she wasn’t even treating it as a loss of appetite but rather a matter of willpower or not wanting to drink.

But somehow despite all that I’m on all the antibiotics I seem to need to be on, and seem to have found all the infections that were setting off my “get treated or you may not survive or at least may end up in the hospital” instincts. I’m just glad those instincts are there, or I would have delayed if not avoided altogether, getting everything diagnosed and treated. I certainly wouldn’t have known anything but the lung/sinus infections was causing all the new symptoms. It’s odd to have a body that won’t tell me basic information half the time, but will tell me “You’re in danger, get help NOW.” I wish that simply communicating this instinct to a doctor would result in getting tested for whatever things seemed likely. I think I could do that with my GP, but not with some of the random people you get in the ER. And trying to negotiate all this while disoriented and confused is just… gah, I’m glad it somehow worked out because I honestly don’t understand how, especially given I wasn’t “all there” during times I needed to be communicating clearly.

By this point I’m pretty wiped out and still having appetite problems, but I’m feeling a lot better. I don’t need my bipap while awake anymore, I can get around a little using my old crutches for stability, and my brain is no longer randomly checking out, nor do I feel like any moment my surroundings will burst into a Disney Acid Sequence (warning: the link is to TV Tropes and may suck you in and spit you out twelve hours later). And I’m hoping we caught everything the instinct was talking about.

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

10 responses »

  1. Huh, that’s interesting. I don’t think I have one of those instincts, I often don’t notice something is wrong until I’m at the point where it’s hard to move, although when that happens to me it’s usually just that I’ve forgotten to drink water so I know to check for that now. Maybe it’s something you’ve developed through necessity over the years.

    I definitely wouldn’t want to be in the situation needing medical help and not being able to communicate things, though I imagine that situation would trigger all the things that make it hard to communicate. Your lucky to have a friend who’s willing to help you navigate stuff like this when you can’t, though I guess even that won’t help when people just don’t want to listen.

    Echoing 403 too- I hope your physiology is back in business quickly.

  2. I actually often still do that thing where I don’t notice something’s wrong until I can’t move. And yet I also have this instinct. 

    I remember the first time I ever noticed it, first couple times, I didn’t know what it was saying. I’d keep thinking about death a lot. Not in a morbid or suicidal way. The topic just kept intruding on my consciousness. Then I started to notice I’d be “keep thinking about death a lot” just before a major medical crisis. Then I started learning the feel of it even without the thoughts of death.  Another time, I just randomly blurted out to someone “I’m going to die” with no thoughts attached, like no intent before saying it. Then I collapsed, started shaking, and started throwing up in pretty rapid succession.  The person fortunately took this seriously and called an ambulance.  By the time I got to the hospital I was delirious, my liver was doing weird things, and I felt alternately boiling hot and freezing cold. 

    And I think as time went on it became easier to detect this instinct being activated before things went quite so totally haywire. Not always too much before, but before. 

    The most frustrating one was with bronchiectasis. Because I knew something was going wrong that could kill me, but had very few leads on what it could be. I’d had a lot of lung problems going on but everything we tested kept coming up negative or not positive enough to be a problem. Then they did a CT scan and found it and got me under treatment, and it was like… I went from every breath being a conscious effort to breathing back in the background again. But that whole time, I had that knowledge something was wrong and not a clue what to do or even where to look.

    So I think you’re right that it’s evolved from necessity. But I also think it’s been there since long before I could recognize what it meant, in the form of feelings or thoughts “out of nowhere”. 

  3. That makes sense. So you’ve always had the instinct but what’s evolved from necessity is your awareness of it, including what it means and how to respond to it. Maybe more people could do something similar if they had had enough medical problems that could kill them untreated.

    From that perspective it is probably a good thing that I’m not aware of having any instinct like that.

  4. I am so glad you got to a pulmonologist that last time who could understand it was a basic chronic problem and who stuck with it long enough to figure out what was wrong. Once you recognize something is wrong getting to the right person to help in the short run (ER sometimes needed emergently) and then to someone capable of seeing patterns to prevent re-occurrence is not as easy as it might sound.

    As for that instinct, thank goodness it is there and that you have learned from it and continue to hone it. I have always thought the more we trust in our instincts the stronger they become. They aren’t tangible so initially I think they get questioned but after such dramatic events as you have had and I know you have come close to death more then once, you pay attention. At some point you never 2nd guess them again. They become like a trusted confidante with specialized knwoledge.

    When you don’t have good body awareness I wonder if there is some sort of flow chart type check sheet that can be instituted on a daily basis to take the place of such awareness. This before the situation becomes so dire that instinct jumps in and gets your attention sometimes at the 11th hour. I think of this similar to a diabetic checking their feet every day to make sure they are ok since they may not be able to sense a cut or problem. While I don’t have diabetes I do have a sensory neuropathy that prevents me from feeling certain things in my legs and feet. Yesterday I walked by some thorns and later happened to look at my leg and see blood flowing downward in two spots. I didn’t feel a thing. If I had a knowledge that I should look at exposed legs after walking through a thorny patch…just in case a problem developed…I would have caught it sooner. I am still learning how to live with this new development intelligently.

    Adaption is so important.

  5. wow. Yes, definitely, thank goodness for that instinct. And also, that you have friends nearby who recognize the seriousness of the situation.

    You mentioned flooding and tornado watches in an email list………..yep that’s happened here too. Not too far down from you.

    What is a bipap? I’ve heard of a c-pap……… significant other uses one because he has sleep apnea. Never heard of bipap before……..

    Can you tolerate cranberry juice? That’s good for warding off UTI’s………..if you can’t stand the taste of cranberries there are red tablets……….I cannot remember what they are called……….basically they do the same thing. cranberry essence in a tablet form you can swallow.

    I also find that I feel like crap when I don’t drink enough water.

  6. A bipap is like a cpap only when you exhale it lowers the level of pressure. Mine also has a thing called adaptive servo ventilation which is designed for central sleep apnea (where you just stop breathing for no apparent reason, no obstruction or anything), where if it detects lack of breathing or shallow breathing, it puffs a bunch of air into your lungs to get you started breathing again. This makes it even more amazing when I’m having trouble breathing for some other reason, because it does the same for too-shallow or too-infrequent breathing when awake. I have both central and obstructive sleep apnea so it has both the constant level of pressure when I inhale (for obstructive apnea), and the adaptive servo-ventilation (for central apnea). (And since I have apneas when awake if I get too relaxed, it’s also good for a lot of things when I’m awake.)

    They’ve apparently found that bipaps work better than oxygen for certain applications with people with asthma. And since I have other things that can impair breathing, the machine can really help me take deeper breaths. At one point during this recent illness, just turning on the bipap made my oxygen level go from 93 to 99 very quickly.

  7. This is a very late comment, but so glad you did get help! And I hope you’re fully recovered soon, since you mentioned still being sick in a recent post.

    “If Amanda got her leg lopped off, she’d be insisting she could bandage it herself rather than go there.”

    That sounds too familiar. Glad someone persuaded you to go in. In a way, I like that my husband seems to consider it more respectful not to push (especially with the PTSD), but, yeah, sometimes that really is necessary.

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