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Just got out of hospital

So i just got out of the hospital.  I had the flu.  Luckily only the flu.  But my body is hanging by a thread. A thread. Like they changed around my stomas and everything there is leaking.  I keep falling to the floor from the congenital myasthenia caused by my AGRN mutation.  i am still slighty delirious.  Usually I get passive delirium.  This is active delirium — the kind people pick up faster.  I stood on my bed.  I ripped my hair out.  I was convinced they were going to kill me.  And that they were easing me into death.

But I am learning.  Especilally learning the hard lessons about surrendering to not knowing what is going on.  That was a hard one for me.   At one poiint the nurse said I needed ADD meds.  And apparently the fastest way to get a “sitter” (someone who stays in your room at all times) is to “bedstand”.

I am freezing cold all the time from adrenial insufficiency. 

But I did a lot of facing my mortality in hospital.

Despite or because of thinking I was already dead and possibly in hell.  I don’t believe in heaven or hell.  But old training dies hard I guess.

Anyway I feel really good about all this.  And I have made a promise to my friends to go back to typing for good.  Speech makes my brain hurt.  And even my doctors worry when I speak. Usually a sign of delirium.  And as the delirium wears off, I do better with typing.  Speech is evil.  For me.

I would urge my friends who speak under stress to type anyway.  Emergency speech can still be frigging evil.

Oh and I’m trying to cuss less, despite the title of this blog. 


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.

4 thoughts on “Just got out of hospital

  1. Im so glad it was ‘just’ the flu and not covid19!! And im glad youre home safe now

    I relate to a lot of what you said – I get very easily passively delirious any time I get cold/flu sick – it must have been scary to get it as bad as you described!!

    Like you, I type out my thoughts cause speaking hurts. I can have lengthy spoken conversations but my brain gets inflamed, my ears hurt, my throat hurts and gets raspy and theres a ridiculous recovery period…speaking outloud can also impact my ability to walk or prepare meals for myself

    Ive had problems with abled ppl online ripping me for ‘obviously not being disabled’ since I can type.

    Im like wtf?? Friends in person have told me Im “not cognitively impaired” because I can type coherently most of the time

    I feel that they are trying to force me to choose – be recognized as disabled OR write my thoughts, opinions and experiences.

    In their minds Im not allowed to do both.

    Thank you for your blog posts – this is a place where I feel very welcome to exist as I am and I find your writing very relatable and very healing.


    Liked by 1 person

    1. Those are all amazing words to hear. Thank you. For validating my experiences and for sharing yours. My brain has gone all woobly in the head and it is good someone understands, it means a lot. With all these social isolation protocol it is hard to get contact with anyone other than my roomie and the occasional VNA person. But they have cut back on VNA for obvious reasons. Nonetheless I get an ostomy nurse Monday Wednesday Friday, and oh wow what an amazing ostomy nurse she is. She saw right away my body was draining in ways it shouldn’t and she patched things up the usual way. Usually the ostomy nurse at the hospital does amazing things. And she did do some. But she was not around long enough to see whether it helped and make adjustments. They are massively short staffed, and the contact precautions…

      I don’t know if I have been exposed to coronavirus. The ambulance that took me home from the ER (went there for falling at home, they did nothing and sent me home because the x-ray machine waas contaminated. That ambulance, they said the last patient had coronavirus. But they said they cleaned it up. I hope that worked. I don’t need to get deathly ill or to spread it around without noticing.

      I was and still occasionally hearing voices that weren’t there. All I have to do in those situations is accept I do not know what is going on. That is getting easier. But Laura taught me not to trust anything I hear through a closed door. Because when i am delirious I am very delirious and hallucinations are part of that. One time I even hallucinated entire people. I might have this time too because I thought I saw creatures that do not exist.

      Right now I am just feeling a lot of gratitude. For being home. For all my sitters (like a one-to-one in the hospital, someone with you at all times). For the LNAs and nurses and doctors. For the fact I really did get taught a lot of hard lessons. For silver linings. For allowing people to help me. I understand a lot more now. Including sometimes I just need to chill out, suck it up, and deal with things as they come. I had a lot of self-pity when I thought I was in hell (which I don’t even believe in). I knew self-pity gets you nowhere. But now I know it in my bones. I know to relax and deal with anything that comes at me. Even death, though I want to live as long as possible. Nothing is certain. But despite the monstrosity of this situation, I feel like I will be okay no matter what happens. And sometimes I just need to take a chill pill.


      1. Yep! Its hard to chill but definitely good to be able to be calm in unknown situations.

        My brain damage makes me hallucinate a lot of stuff to varying degrees on a near daily basis… very strange animals, very strong tastes – usually strawberry cake. The worst is when the Imaginary phone rings non stop for days – I honestly cant tell the difference between the hallucination phone and the real one.

        Very occasionally, the hallucinations can get really sinister but I have learned to stay calm and wait for them to change to something more pleasant. Its a skill that comes with time and practice

        Its understandable you would think you were in hell for a while… everything thats been happening and all the images on the news combined with the cognitive stuff and the fear and being delirious and sick…It can all mix together in a real bad way

        Im glad youre home too and Ill keep my fingers crossed you werent exposed to covid19!


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