Theme
3:55am April 26, 2015

Delirium dreams, and question about objects not behaving as they should in dreams

Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]

Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]

Hither and thither [E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]

And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]

Repeat infinitely and rapidly in a chorus of bass voices, with cartoonish things that look like men in top hats but ain’t so, in repetitive motion coming from the hats, and you could get one of my delirium dreams from the hospital.

I don’t know why I find things like this scarier than nightmares of the usual sort, but I do. A lot of my more ordinary nightmares still have to do with ordinary objects not behaving in ordinary ways. My brother told me he once had a, nightmare where turning off the tv with the off knob wouldn’t turn it off and neither would unplugging it. I instantly knew why that was terrifying. More terrifying than getting chased by zombies, which has happened to me a couple times in dreams.

Also note #actuallydelirious tag. Because the #delirium and #delirious tags are full of delirium as a metaphor, or else references to the Neil Gaiman character Delirium.

Posted to #actuallyautistic because I’m curious if the kind of dream my brother had is an autism-specific form of nightmare, a neurodivergent-specific kind of nightmare, or a nightmare no matter who has it. I have reasons to wonder if dreams of objects behaving in ways they shouldn’t are scarier to autistic than nonautistic people, but no evidence either way.

src
6:53pm July 6, 2014

➸ Sign the Petition to Help get Funding for Gastroparesis!!!!!!

wonderlandsimpulse:

Gastroparesis affects approximately 5 million Americans. It is a disease that affects the vagus nerve which controls the digestive system. Gastroparesis is a chronic disease which slows or stops the movement of food from the stomach to the small intestines, with no known cure and few medications that may help with some of the symptoms. Most physicians do not know about this disease, let alone be able to treat this disease. This petition is to show that there is great need to get the Functional Gastrointestinal and Motility Disorders Research Enhancement Act passed so those of us with the disease can get the help we need before this disease wins us over!

1:52am June 5, 2014

“I read that when you live with a chronic illness, you experience grief and even loss.
And that is the fucking truth.
You grieve for what your body can no longer do or feel, or was never capable of doing or feeling.
You experience loss in that it feels like someone you love has died, but it’s you. You are not truly alive anymore.”

— 

(via golden-grace)

Wow.  No.  I’m alive.  It’s everyone else who tries to tell me my life is over.  I’ve been fighting like hell to prove I’m alive, and then I run into this?!  I understand grieving, but there’s grieving what you’ve lost, and there’s acting like you’re dead when you’re not.  I’ve been close enough to real death to know that you don’t want to say things like that in case they come true for real.  Because really not being alive anymore?  The real thing?  It’s permanent, and it’s completely, completely different from just feeling really awful because you’re sick all the time.  Trust me, you’re alive, no matter what it feels like.  And I’ve been living with chronic illness my whole life, thought I’d die up until a few months ago something changed, and seriously I was never “not truly alive anymore” no matter how bad it got.  And I worry about people saying stuff like this when I’ve had to fight for my right to even be alive because doctors already believed I was half dead already, and people go around saying they’re half dead already as if it has no effect on how we’re treated by the medical profession or otherwise.  I mean yes, I understand this is someone’s feelings, but sometimes when you express your feelings, people listen, and people apply it to other people’s lives, and people die as a result, so it’s not just self-expression after all.

10:23am May 16, 2014

Also I’m trying to get to my other asks

And I’ll always try to get to all my asks, but might not get to them in order, and I’ve had a long night.  I don’t know what made it so long, it just feels like I barely slept at all even though I slept okay.  Probably lingering illness.

7:14pm May 13, 2014

➸ Wow that was a close call.

feliscorvus:

youneedacat:

Started feeling extremely lousy and nauseated, to the point where even with all my emetophobia-induced coping skills I wasn’t sure I’d be able to hold down my stomach fluid. We drained out my g-tube and got about 3 cups of fluid out. No wonder.

It still never fails to surprise me how much stomach…

Gah, glad you were able to avoid actual barfage. I was actually wondering if you might have the flu, vs., a cold, because apparently Influenza B is hitting the Northeast pretty hard right now. Weirdly late in the season. I guess it’s the “other” flu, not the A-type/swine-flu thing that more people were getting in the winter. And vaccines help a lot but obviously some people still catch the virus, though they are more likely to get a milder version thankfully.

Re. the tube thing, thankfully the “can’t burp, but full of air and feeling horrible” thing doesn’t happen that often these days. But when it does, yeah, I can definitely understand how having an extra valve attachment would be awesome. I’ve sort of figured out how to push on parts of my abdomen to make the air move down, rather than up, and (tmi) I don’t have any problems, er, venting from the other end. :P

This definitely feels more like a cold than the flu.  It’s mostly just sniffles and feeling a bit lousy, with a sore throat.  I’ve had some coughing but mostly from post-nasal drip, it doesn’t feel centered on my lungs.  And it smells like a cold.  (I can often smell a cold on myself or on other people, I can’t describe the smell other than it smells like something diffused in the air, very specific.)

The stomach stuff is related to my obnoxious habit (whenever I fast and it throws off my food cravings) of chewing on caramels.  Which stirs up stomach fluids like whoa.  I wish I could chew on something umami, but caramels get digested quickly, umami foods do not.

2:39pm May 12, 2014

I went to the pulmonologist today.

She was thrilled that I’m doing better.  Told me now that I’ve got a chance to live a normal lifespan I need to quit chewing food and putting myself at risk for aspiration though.  :-/

My pulmonary function tests were great – I think she said 104%, 100%, 88%, and 78%, and all within a good range.  (I don’t remember which were which.)

It’s nice to have doctor’s visits where all I had was good news.  The adrenal insufficiency diagnosis really has changed everything.  She said she’s never seen me looking so good – and I have a cold right now.  

I did feel the cold more trying to get up and walk around and go to an appointment than I feel it staying at home in bed, but it’s still within the realm of normal sickness, it doesn’t feel like the disaster that having a cold used to be.

10:41am May 11, 2014

So I definitely have a cold and it’s definitely annoying as hell because that’s what colds do.

But I’m also on double my dose of steroids – which adds up to 1 mg (10 mL) in the morning, 0.5 mg (5 mL) in the evening of dexamethasone.  And it’s making all the difference in the world.  Like I feel under the weather, but I don’t feel deathly ill the way I used to feel with even a more minor cold than this.  I haven’t even had to contemplate an ER trip yet, and hopefully I won’t have to.  Last fall I got a cold too mild to almost even qualify as a cold, but I ended up in the emergency room because it felt like breathing took too much effort.  And they kept saying “but you’re not sick enough to have symptoms as severe as you’re describing, you barely even qualify as sick at all”.  But I was sick enough, if you factor in adrenal insufficiency.  Getting a cold depletes cortisol, and if you’re not making more cortisol, that’s a problem.

But with the dexamethasone, I feel under the weather but nothing I can’t handle.  Hopefully it will stay this way.

This also explains the day I had my tube replaced.  I was walking down the hall at the hospital, and I was dragging my feet and weaving all over the corridors.  I was afraid I looked drunk, and I couldn’t explain why I couldn’t move right.  Because there’s no reason.  But now I understand, because that night is when the sore throat started – I was starting to get sick and it was wearing down my cortisol.  No more weaving or foot-dragging since I started stress-dosing.

Not that I’m going to push it by exercising or anything, until the cold is over and I’m back to normal.  My very first adrenal crisis was set off by a very minor bug I had, where I was trying to push through it instead of resting.  So I have a healthy respect for this now.

2:24am May 9, 2014

So I wake up in the middle of the night…

…with a sore throat, and one leg that’s completely sore from the position I had it in where it didn’t move all night.

Going to be a long day.

Wearing a mask so that I hopefully won’t get any support staff sick.  I take that really seriously, because I can’t be the only person where getting sick could be a big deal depending on the illness.

I’m glad that I ran through all of my caramels in one day.  That way I won’t be tempted to eat them and make myself sick in other ways. 

(When I have to fast, this thing happens… I get hungry for the only time, ever.  But since tube-feeding is so slow, at least j-tube feeding is super slow, the time from when I start the tube feeding to when I stop feeling ravenously hungry, is a long and grueling time.  So I eat chewy candies, because the sugar from candy goes into your bloodstream fast.  And then I drain it from my stomach so I won’t aspirate from all the extra bile and remnants of the candies.)

Which is why I buy candy with an EBT card, btw.  Candy and coke, because coke is how you unclog a feeding tube.  I’m sure people who see my staff buying this stuff think about “those horrible people on welfare who buy candy with their food stamp money when we should be spending it on something "nutritious”“.  Except that I can’t eat anything "nutritious”, and I do need food products that aren’t considered “nutritious”.  Not that it should be any of their damn business why, but it pisses me off that people judge in the first place.

5:27pm December 20, 2013

How do you tell if your GP is so bad you need to go to the hosptial?

theprincesspatient:

I haven’t kept solids or liquids down for 3 days, I lost 10 lbs, and there was a little blood in my vom. I just feel so sick and nauseated :(

One way is to go to the emergency room or ask a doctor what to do.  If you’re truly not keeping any liquids down for 3 days, that’s an emergency, I’d say.  You can’t live very long without any liquids.

12:56pm September 11, 2013

Sick nightmares

I keep having weird nightmares where I feel terribly sick and weird things happen and everything I try makes it worse… And then I wake up feeling terribly sick.

Usually it’s nausea because gastroparesis. This morning it was combined nausea and kidney pain from holding urine too long.  I had this epic feeding tube nightmare the other day in which terrible things were happening to my tube and I was floating down all these rivers, trying to find help. I never did.  In fact at the end of the dream I was trapped in the middle of nowhere in China, fearing I would die before I could find medical help. But I woke up and the problem was just I needed to squeeze the accordion on my drainage bag.  As soon as it did it sucked everything out of my stomach pretty fast. Problem solved.
But this morning I really thought I’d throw up, I tried everything, turned out I needed to take a crap.  And the kidney pain went away a little while after I urinated and put a bunch of water in my j tube.  Obviously if it stuck around I would have gotten help. But I often get kidney pain if I get that combination of slight dehydration and not urinating for too long. So I didn’t automatically run to the doctor over nothing. I sure hope it’s nothing as usual… I really need a few months where I don’t go on antibiotics. 

But I’m now sore in my upper right back… Probably the old post-cholecystectomy syndrome but knowing that doesn’t make it hurt less.

I only got three hours of sleep last night, and one more this morning off the bipap. Those three hours were interrupted twice by that thing with the awful dreams and waking up feeling sick. I felt so awful I took my temperature when I woke up but it was its normal slightly low self… 96.8.

Now I’m feeling less than great but better than horrible. Ragged and in pain and brain fritzy.

12:07am March 28, 2013

My Skype description of my liquid antibiotics that are supposedly cherry flavored

Ok so.
In order to find the cherry.
You have to be looking for the single little cherry under the mound of rotten cabbage.
That’s fucking just vile disgusting WTF why do they do this to sick people?

9:41pm March 20, 2013

So basically

I slept a lot of yesterday and last night then slept a lot of today and I’m still tired. I’m not exactly coughing up a lot and I can’t tell if that’s bad or good. When I do cough up anything of substance it’s green still. So it’s good I’m on antibiotics.

I guess I’m glad I know that drinking a ton of Gatorade just before bed is an aspiration risk. Just like drinking more food-grade liquids like Ensure is, for much longer before bed. But getting a lung infection is not how I wanted to find out. I’m getting too damn many this year. My oxygen ranges from 90-97 while awake, down to 85 while drowsy and I don’t want to imagine what while asleep. And I feel really tired and nasty all the time. Not as tired and nasty as when I got pneumonia last year but I’m keeping an eye on it.

Maybe, maybe, maybe I will have enough awareness of what it feels like when I shouldn’t put on my bipap now, to avoid this from now on. I hope. I’m tired and even my arm is tired typing. And I know that even though so far I always recover that doesn’t mean this isn’t dangerous as hell. Have to work out some solution. And I’m becoming more and more sure it’s gastroparesis belching up stomach liquids then bipap shoving the liquids into my lungs because the pattern keeps repeating.

9:24pm March 20, 2013

Thank goodness for gift cards.

I feel like shit. I’d been thinking of getting a new iPod (the music kind not the Touch) for a long time because it’s really old and has battery issues. And now a long search of the house by me (bad move – sent heart rate way up and oxygen way low and made me feel dizzy and woozy the rest of the day), and by staff, has turned up nothing. And I think maybe I left it in the hospital. And I can barely read Nancy Drew, due to brain not working. (I was reading it when I was six, mind you. Not with good comprehension but it taxed me less than it does today.)

So all I can do for the kind of music I want at the moment is like, find long Beethoven symphonies on YouTube and play them. Because going song by song for shorter stuff is painstaking and most people do not upload whole albums.

Anyway I found an old refurbished model (several generations back) 16 gig iPod on Amazon, and bought it with gift cards plus money. And I’m happy. Because maybe soon I can play music again the way I want to. And that’s essential when you have just enough brain for music, but not enough for reading or much else, and you can’t DO anything much, and you need distraction from pain and sucky breathing.

And this one cost me less than my last one (same generation) and has twice as much storage space so that’s good too. And makes up for the irritation of having to replace the thing.

1:02pm March 9, 2013

Strange body and mind weird things

I don’t know quite what is happening.

I feel like I’m floating little pieces divided into little petals of bright pink and bright blue.

And they are inside my belly and they are moving around and I can’t seem to stop them.

And they hurt. They hurt in a way that reminds me of that horrible sound that comes out of my mouth when my belly hurts so much that I forget where the sound is coming from until something reminds me.

Somewhere way back in my mind I remember antibiotics hurt bellies.

I can’t drink more kefir until a certain amount of time past my antibiotics. Also can’t drink it until my stomach has passed my Ensure. Because piling things in my stomach won’t help when damn thing is paralyzed.

A lot of odd thoughts keep passing through my head. Like the flower petals. Only weirder. And they go through so fast I can’t fix my thoughts on one before another goes through. Some are just odd, some are grotesque. Fortunately the grotesque ones are gone too fast to be a problem.

A lot of the thoughts have to do with Voyager, because I’m making my way through the series for the first time. But they’re not from actual episodes. They’re random weird stuff dredged up by my brain. My brain seems to have an excellent grasp of character in particular. Also lines of dialogue. But not plot or anything like that.

So I hear and see in my head all these characters, doing and saying all these strange things that fit them and don’t quite fit them at the same time. Also bleeps and bloops from machines.

I am also tired. Like so tired that various body systems aren’t quite working the way they normally would. Not bad enough to be worrisome. And also Lord of the Rings stuff in with the Voyager stuff. And the word ‘festivion’, which I can’t remember ever hearing.

Being this tired means lying with every body part touching something. Even my typing fingers almost sit on the screen and type random letters. And Neelix is planning to take off in his own ship somewhere. Not sure where he got a ship from but he has weird plans for it that I’ve just forgotten already. And that’s exactly how fast these things leave my head right now.

And then I just lay here with my eyes closed not sleeping not dreaming not anything much. Then wondering why nobody in my head has reported what’s going on. Then realizing characters from TV shows can’t act independently act on my behalf. And can’t file damage reports as if I’m a malfunctioning computer — or space ship. But now someone I don’t recognize is having his feet dipped in ice cream for no apparent reason.

I think I’m likely to fall asleep or something if I don’t hit the publish button soon. And Tuvok is measuring something about ants with his tricorder. Tuvok has a very Spock-like voice, more so than most other Vulcan characters. Don’t worry too much about me. I think I’m just dealing with antibiotics making me feel really weird, plus adjusting to an entirely new sleep pattern compared to before. It’s enough to make anyone a little weird.

Now the characters are turning into cars with human heads and faces. And there’s telephones with the lines and receivers all utterly cross-wired with cables for some reason. I think this might be a very good sign I should probably sleep for real. :-P

ETA: Whenever fall asleep real, I dream in much detail about editing this document on a laptop that doesn’t even work right now. FML. ;-)

11:29pm March 3, 2013

Sometimes I think…

…that when I get sick, Fey thinks “This huge stupid kitten of mine doesn’t even know to crawl under a rock and hide, she just lays down and looks sick in full view of everyone. Better keep an eye on her so nothing even bigger comes along and eats her while she’s weak. Stupid kitten…”

I don’t know, of course. But from the Exasperated Mother Mammal looks and the refusal to stay away from me more than a minute, it’s a strong suspicion.