Down The Rabbit Hole With ICU-itis

“ICU psychosis is a disorder in which patients in an intensive care unit experience anxiety, auditory and visual hallucinations, paranoia, agitation and disorientation”

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November 22nd 2015 my life changed forever…again.

Exactly one year ago today.

It’s taken a year to sit with  the almost daughter, the experience still so vivid.  I can’t wrap my brain around everything that happened on that day and for weeks and months after. I’ve wanted to write a blog about my experiences. It’s an experience that family and friends are never prepared for and from a patients view terrifying. There are simple things you can do to help alleviate someones terror, someones hallucinations, delusions. I’ll tell you what those things are at the end.

I woke up with one difference that day. Centralized, excruciating, left, lower quadrant pain. Pain so severe that with any movement at all, a scream, dripping with tears would escape. I have a very high pain tolerance and dealing daily with a mast cell disease you are used to pain and feeling quite ill.  My rational brain said go to the hospital, the nurse/patient thinks it will go away.

Being chronically ill with a complicated mast cell illness along with ME and Fibro you tend to forget what normal is, what not being sick is, what acute pain feels like vs the constant deep bone, muscle and joint pain of disease.

By noon I was bleeding heavily rectally, in so much pain I couldn’t get up from the toilet. Within minutes, my friend and the ambulance arrived. They are familiar and know my mast cell protocol by heart.

This was different. We all knew it was bad. No words needed to be spoken.

 I had been feeling worse the past few months.I thought it was my mast cells acting up. I had recently started a continuous Benadryl pump with hopes of keeping my mast cells in check and me out of anaphylaxis and the hospital.

The diagnosis: pelvic abscess, bowel perforation, partially collapsed lung and sepsis.

Very quickly things became a blur. CT’s with contrast, meds, IV’s, surgery the only option. The surgeon informed my daughter and friends there was a good chance I wouldn’t make it through surgery. My systems were severely compromised due to the sepsis and of course, mast cell issues adding to the complexity.

After experiencing respiratory arrest in the OR and with continued problems with my oxygen levels I was sent to ICU. My O2 sats were 82%@7L, systems unstable, survival questionable.

Day after day, hour after hour,

moment by moment,

systems stopping and starting

Days passed.

There were brief moments of awareness, of tears and fears and then quickly I would be put back in the twilight zone. 15 IV bags being controlled by nurses, each system tweaked by moments.

Life and Death in The Rabbit Hole

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Critical Care would continue in the 3 bed step-down unit.  Constant monitoring by machines and nurses. I emerged from the rabbit hole for brief moments. I lay there attempting to reorientate myself. I tried to check out body parts but I couldn’t move. Tubes and bags hissing and whooshing were everywhere sucking out toxins and spitting into collection bags of assorted sizes.

I was very much in the danger zone, no guarantees of tomorrow.

Pale beige curtains surrounded me. I had my own tiny cubicle. Stains from previous tenants moved changing patterns as I watched in horror.

In Critical Care, the lights never go out,  noise never stops,  call bells constantly ring, the retching, the demands for pain meds, the cursing of another patient in The Rabbit Hole. Reality fades in and out like waves..

I hear them. I know….

They’re talking about me!

Stop whispering! Please!!

I know what you are thinking. It’s not true. They’re  going to take pictures of me. Their friend, I know all about him…he’s the guy that has been stealing medication from patients drawers and little old ladies purses while they wait for answers about their loved ones.

It’s true.

I hear them talking.

I whisper when my friends visit. Pointing, desperately gesturing in attempts to have them make sure my purse was safe…zipper side at the back. They don’t understand my desperation but they patiently show me that everything is there and quietly close the drawer exchanging looks of confusion.

A constant stream of doctors, nurses, phlebotomy staff, physio, dietary, more blood work, new bags of nutrition added to the several already hanging. A whirlwind of medical necessities keeping me alive. To them, I speak appropriately. I know my eyes show my terror. No one asks.

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 I can’t tell them about the guy across from me and his friend and the many changing patients beside me. I know they wouldn’t believe me. Each one is part of the rabbit hole. One is chanting Native prayers and putting spells on us with his computer coding which I know nothing about. The other, screams obscenities while he pulls out tubes, blood and feces splattering over the floor oozing under my curtain.

At night, the sounds are deafening, bells ring louder, a tangled tube is pulled out. I call for the nurse to help him.  I can’t yet move myself. My left side is so swollen, hot and painful, from shoulder to hip. My trusty mast cells coming to the rescue in crowds, building the fluids and swelling until it looks like a raw slab of meat plastered on my side. I drift off and awaken to screaming. My voice, screaming for help. The nurse said it was night terrors.

They can only get blood out of my foot. My body hangs on to each drop with vengeance. I don’t remember how many times I was taken down to have CT scans with contrast to monitor the abscess and lung. No easy feat considering the tangled puzzle of tubes and machines. The people in nuclear medicine wore makeup..heavy makeup.Almost like clowns I thought. I think they were making a movie or something. I didn’t dare ask. I was always left right by the nursing station where the other patients in their tiny cubicles could see me. I could hear the whispers between them. They were laughing because my book was on the TV but they didn’t believe I was the author. I didn’t correct them. I couldn’t look at them so I lay quietly, tears rolling down my cheeks, eyes closed. Even then the constant movie that played in my mind didn’t stop.

And no one knew.

So many other stories, all with a few pieces of truth. Helicopters so close I could hear the pilots and nurses talking. I was sure they were getting rid of me. The drones that my roommate would throw over and under my curtain. The look on certain nurses faces when I rang the bell. The chaos in the hall. They had placed tape around an area in front of the door. I couldn’t understand. I slept with my buddhist mala for safety, reciting mantras to keep the constant voices subdued in my head. It didn’t really work.

I tried sending random garbled messages, despite the fact I couldn’t see my phone letters. I had to get someone to help me. I managed one message.

All it said was HELP. No one came.

I could feel the energy drain out of me. The simplest conversation left me feeling spent, drenched in sweat, wanting it all to end. The pain was endless and uncontrollable. It was like being on a bad acid trip back in the 60’s. One that didn’t end.

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I don’t scare easily. Or at least that’s what I thought. Until the Rabbit Hole sucked me in, that is.

I’ve never been so terrified, nor felt so alone as my month-long journey dragged on.

You can experience flashbacks for up to a year and it creates PTSD. Another experience to add to my already full box with that label.

The prayers, the energy and most of all, my two friends pulled me thru. It’s times like this you find out who your true friends are.

I wanted to write about this because it’s not uncommon after someone has been in the ICU for a while. The multi cocktail of medications that keep you alive but living in the Rabbit Hole can often create ICU psychosis. Having been an RN for many years, the last 20 spent in Acute Care Psychiatry I felt I understood my psychotic patients. I didn’t. Now I do. It’s so real, so frightening, so isolating. My heart goes out to those that suffer with psychosis, schizophrenia or anything that creates a Rabbit Hole Experience.

Here are a few simple measures that help someone who is psychotic: Gentle reassurance that they are safe. Gentle touch, holding a hand, words of love and safety. Gently pointing out things that are real such as my “drones” that were sprinkler heads.

Understanding. Compassion. Love. Your presence, your composure and quiet voice.

This year has been challenging. Physically and emotionally. My Mast Cells are still not settled creating a physical nightmare. Some days, the tears flow freely and thoughts wander to places I’d rather not go. I now have a piece of my bowel on the outside of my body. My world is dictated by my medical issues and mast cells.

I’ve spent a year in The Rabbit Hole. I’m so tired, so sick. My life has been reduced to living in a bubble and hospitalizations.

I’m trying to find my way back.

Can you lend a hand?

9 thoughts on “Down The Rabbit Hole With ICU-itis

  1. My Dear Claire. I just read this now. I can’t fathom how intensely frightening that must have been. Just thinking about it grips my chest. You answered something very important to me though. I have been trying to figure out for ages who was down there with me! It was you. I’m so sorry you felt alone! I wasn’t anywhere near as sick as you were, but I knew that there was someone else on the same side, someone else that wanted to get out. Since then, as I have desperately tried to figure things out (and deal with what I found out…), that’s my rabbit hole. I call it ‘Going for tea with the Hatter’. It’s the same conversation over and over again.
    If I see you down there- would you tell me to get the heck out of there? I’ll grab your hand and we’ll flee together.

    • Yes..scary it was. Did I mention the porters wore clown makeup!! As if they were in a movie.
      I think I have another post about “The rabbit hole” so of course..ill grab your hand and we can find our way out together..it’s a scary place to be alone❤️

  2. when this soulflame journeys on
    hope we’re fortumate enough
    your chantings
    will lead spirit
    toward the star ancestors. e’he

    you’ve found the way toward the surface
    every time. along with
    intense struggle.
    followed by challenging steps taken
    of added layers and levels to re-create
    grace by fire.

  3. Very moving Claire. You are a survivor of more pain than any one person should have to endure. Glad you have the words to share your experiences.

  4. As usual my friend, you write with raw honesty. I knew you were sick, so very sick, but had no idea just how bad it was. Claire, you have pulled through so much it is incredible. Thank you for letting me know just how much you have gone through and in such a way that there is no doubt of your resilience and willpower. I love that you are my friend Claire.

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