Three years ago today, I became an ICU patient.

This is a hard day for me.

3 years ago this morning in the wee hours of the morning, I threw up until I couldn’t walk anymore. My mother held my waist length hair back to prevent it from getting in the toilet.

I don’t remember any of this. I don’t remember not being able to walk back to bed without help, or going back to sleep.

I do remember waking up and realizing my tongue was huge, and telling my mother to phone my doctor.

I remember my clothes being cut off, the nightmare that is sedation, and waking up from sedation.

I don’t remember getting sepsis and pneumonia and crashing on Christmas day.

I don’t remember waking up the second time (or was it the first time).

I know I almost died, twice.

And I know that that will be with me forever.

It’s not like the movies.

I didn’t not get to a happy ending or to ride off into the sunset with music that let everyone know I would be just fine.

Instead I could barely walk out of the hospital, and when I got into the car it was cold, dark and gloomy.

I could barely speak above a whisper for months, and my throat felt so raw from a tube being pushed down it with enough force to reach my lungs, twice. (once when I got to the hospital and once when I crashed).

There no happy ending or happily ever after. It’s a fairy tale lie.

There’s been reflection on why I am alive, and really the answers been “I don’t know.”. Why did I live when so many other’s died?

I’d like to believe that I have some future that I have to fulfil, but I’m not sure of that. Maybe? Hopefully?

I’d like there to be a happy ending, where I say “everyday is a gift”, but that’s not true. It hasn’t made me appreciate live any more, made me happy every day, or given me a “new lease on life”. It’s the same old life.

It’s just as hard, if not harder because in the years since, covid has come and has not gone, my father was diagnosed as palliative, I became one of his main caregivers, the house has gotten messier, I spend most days in my pajamas just trying to survive, and somedays I don’t eat all day, followed by days I do eat all day.

There’s no good end to this. Either I completely wear out from caregiving or my father dies. It’s not going to end well.

Having almost died, does not make this any easier. It doesn’t make me more thankful to be alive. Why would it?

Live is hard, and it’s not just hard for me. It’s hard for many people, especially right now with covid, the cancellation of Christmas gatherings, and people intent on making it harder on everyone by protesting new mask laws.

You would think, that reflecting on almost dying, would be a happy and upbeat reflection. It’s not. I’m sorry if that’s what you came for, but I won’t lie to you.

Being as sick as one can be without dying is not fun, and it’s not joyful afterwards either. It doesn’t give you a new lease on life. It doesn’t make life better than before. You just go back to the same old life you had before with the same old problems you had before.

I planned on doing what I could for making life easier for people who were in the ICU as soon as I woke up from sedation. Later as I read the tweets of ICU staff I wanted to make things better for staff too.

I wanted to write my storey, and I had plans for making a support group for former and present ICU patients and their families.

I didn’t do either. I tried to, but as Dad got sicker and my caregiving roles increased, and life took over, I slowly stopped keeping this blog up or making inquiries into support groups at the hospital. I felt guilty for focusing on my problems as Dad got sicker and sicker.

I admire those people like John Walsh who set up America’s Most Wanted after his son was beheaded by a serial killer, but I don’t know how he did it without being side tracked by other things.

I don’t know. I wish I did.

I did not have covid. I had an allergic reaction to a newly prescribed medication.

But…

You do not want to be that sick. You do not want to get covid. You do not want to crash on any day. You do not want to be intubated. You do not want to be extubated. You do not want the PTSD that comes after hospital discharge.

There is no happy ending. Life goes on. More family tragedies happen.

Everyday does not become a gift. Instead every day becomes hard. It gets hard to wake up, hard to keep going, and hard to do basic things like eating, brushing teeth or doing hair. PTSD (which many people get from being in the ICU), follows you around making life harder. There is no “new lease on live”. That is Hollywood fiction.

If you don’t want your life to get even harder than it is right now. If you want brushing your teeth to be a simple daily task and not a chore you put off for days, than do all you can from preventing you and your loved ones from getting covid.

Wear a mask. Social Distance. Wash you hands. Stay at home as often as you can.

It’s hard. I know. I would love to go to a hotel and just be by myself and relax in a Jacuzzi all day, like I’ve done before. I need alone time to just be and think, but it’s hard to get now.

I need new clothes, because three of my jeans have ripped now. I want to get my bangs cut.

But I’m doing all of that, because I know it is infinitely worse to be in the ICU, under sedation, not knowing if you are alive, dead or in purgatory, without any indication of time, and unable to move because you are tied to the bed.

I can’t imagine what it is like without visitors.

If you don’t want what happened to me, to happen to you, take covid seriously, and take all precautions.

I wish there was a happy ending. I wish I did “have a new lease on live”. I wish everyday was a gift.

But that’s just not the way it works in real live. It really isn’t.

Tide Pod Challenge and Covid19.

Things have changed in the world because of Covid19. Entire countries have shut down, some people have taken great precautions and some people have not.

When I was in the ICU, the Tide Pod Challenge was popular. I overheard some ICU nurses discussing the challenge, and questioning why people didn’t take warnings about not consuming poison seriously.

Today the danger is different, but the people’s reaction to it isn’t. Many people are taking precautions, by wearing masks, washing their hands and staying at home. Many other people are refusing to, protesting new pandemic rules, and ignoring all sensible advice about not getting covid.

The cause of the danger is different, but the response is the same: some people are completely disregarding medical advice.

The question is the same: Why don’t people listen to medical professionals.

The answer is also the same: People don’t understand what is like to be that sick. They think it is the same as being sick with the flu.

For most people, the sickest they’ve been is having a bad cold or stomach flu. They’ve never been in the hospital and they never had a serious or life threatening medical condition.

They think the most pain they can ever be in is child birth, with painkillers.

They haven’t been in so much pain, that all they can see is a black void of nothingness. They haven’t been taught how to embrace the pain, and go through it, because fighting it just makes it worse.

They haven’t had to work to open their eyes when visitors come, but found that it took more effort than anything else they had ever done before. They haven’t tried desperately to get untied from a bed, so they could escape the nightmare of sedation.

They don’t understand, and likely never will.

They are more likely to think of a violent stomach flu, in which you can’t vomit anymore, because you’re stomach is empty, but still you’re stomach tries to throw up nothing, when they think of being very sick, than what I described above.

If they were told, “wash your hands, wear a mask, and stay at home if you can, or you will have a violent stomach flu, that will go on for days, maybe weeks”, they would be more be likely to wash their hands, wear a mask or stay at home, because to them, being on a ventilator in the ICU is so foreign it might as well be mars.

It’s just incomprehensible and completely beyond any comparison to any place they’ve ever been to or anything they’ve been through before.

With a threat that is so unknown, rarely talked about, misrepresented in the media, and rarely seen in person, most people just truly don’t understand the risk.

Like the teens consuming Tide Pods they think that getting sick, is at most a trip to the hospital, watching TV all day, getting meals served at meal time, sleeping in an uncomfortable bed, and then resuming normal activities in a few weeks.

They don’t know that the hospital stay and delirium can cause PTSD, that muscle mass severely decreases in the ICU, or that the recovery process lasts months, if not years.

They can’t understand, because they have no basis, in which to understand.

Most fictional characters who’ve been in the ICU, aren’t that sick. In one show I saw, a main character decided he had enough of being in the hospital, pulled out all of this wires, and unhooked all of his machines in one motion, before getting up and walking out of the hospital, with his nurse following behind saying “you can’t go.” He didn’t even need to worry about a hospital gown that didn’t quite close in the back, because his fit perfectly.

Although people understand fiction isn’t real, if it’s the only source of information you have about a place you’ve never been, your imagination of that place, will be close to the fiction you watch and read.

We who know what it is like to be patients, staff in the ICU and visitors in the ICU, need to tell them what the ICU is like. We need to speak up and say “hey, as sick as you’ve ever been, this is so much more than that.”

I truly believe that most people, would not want themselves or their loved ones, to be in the ICU if they knew what it is like. It’s not like the maternity ward, that most people have visited, or like the emergency ward that many people have waited hours in to see a doctor. It’s for the very sickest of people.

If I told people “what ever you do, never go beyond that wall over there. Don’t go through that door, ever.”, but I never told them what was behind the wall. Even if there were dragons, volcanoes and hurricanes behind that wall, few people care that I was telling them never to go through that door and behind that wall, especially if they didn’t know me, and most especially if other’s, they did know, told them that harmless puppies were behind that wall.

Add discomfort like isolation, and mask wearing in the room they were suppose to be in, and many people would completely disregard the warning.

Other’s would loudly proclaim me to be stupid, or even destructive.

This is why misrepresentation of the ICU is wrong, and it is why for those of us who know staying silent about the ICU is wrong.

I’m telling my story as much as I can. I’m yelling as loud as I can but I need you to yell too, and maybe we’ll get people believing that getting Covid19 can be worse than following public health advice about washing hands, wearing masks and social distancing.

Maybe we can stop this together. Will you help me?

____

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Thank you for reading.

Crying Alone in a Quite Basement:

I sat alone in a quite basement, the sound of Dad’s oxygen machine, rhythmically going in and out, in and out, as I cried, and tried to stuff my feelings beneath the surface.

It didn’t work very well.

In the medical field the roles don’t often converge. Caregivers don’t often become patients, and patients don’t often become hospital staff.

In my home, the roles converge so often, that I have been both caregiver and patient several times.

Both are hard.

It started when I was born, a very sick baby, that was diagnosed as “failure to thrive”, which means “I don’t know what’s wrong with her, and I don’t care. Take her home, so it won’t be my problem any more.”

My mother, thankfully wouldn’t accept that diagnosis, and took me to a series of doctors until I was diagnosed, and eventually treated with surgery.

The daughter whose live a mother saved, grew up to save the mother’s live.

I noticed something was terribly wrong with my mother, when she got lost coming home from the store, which is only 2 blocks away.

Thus began the same desperate search for a doctor to diagnose Mom. By the time she was diagnosed, a year had gone by and she couldn’t get out of bed, role over by herself, or have a conversation beyond bathroom needs.

That winter was a cold winter, but both Mom and I missed it. Homecare people came and went, complaining about the cold as they did, but neither Mom or I noticed it, because she was consumed with illness and I was consumed with getting her better.

Dad, who traveled for work, came by every two weeks for a weekend. Sometimes he’d stay longer and sometimes he wouldn’t.

In the end, he took a leave of absence, and stayed home all of the time.

We finally got a diagnosis and surgery, followed by time in rehab to learn how to walk again.

She was still recovering when she got home.

Just as she got almost completely recovered, I had an allergic reaction to something I didn’t know I was allergic to, and ended up in the ICU. In the ICU I got sepsis and pneumonia and crashed twice. Once on Christmas Day.

It’s been almost 2 and a half years and I still am not fully recovered.

A month after I got home from the hospital, Dad got sick, and ended up in the hospital. Thus began a two year battle with his health.

He is now dying.

There is a hospital bed, in the living room. It mostly likely will be the bed he dies in. There is an exercise bike in the office, making it very hard to write. Right now, I’m on my bedroom floor, surrounded by both clean clothes that haven’t been folded yet and dirty clothes that haven’t been washed yet.

The basement is a huge storage room, where everything that can’t fit up here anymore has ended up piled up. It used to be a furnished basement, but as our family gets mired more deeply into Dad’s illness, the basement gets more and more stuff, to make way for new things like hospital beds, and bath chairs, and medical supplies upstairs.

Just as our house is in disarray, I feel like my life is in disarray. Because we are in the middle of a pandemic, Dad’s care has fallen on us, and us alone. Family can’t come over, although slowly we are breaking the rules more and more, and maybe they will end up completely broken. I don’t know.

I haven’t had a chance to emotionally heal from any of this. One thing happens, so suddenly that the emotional healing from the last thing hasn’t been completed. Wound after wound piles onto my being, creating guilt that I am inside yelling “what about me”, as my father lays dying in the living room.

That is what live in like for your patients and their families.

Before they even got to the ICU they may have had problems caused by prolonged illnesses, or things completely unrelated to medicine.

And then the ICU brings with it all the things I’ve described in this blog under the “chapters” tab and the other entries. For the family it brings fear of death and the unknown.

It can be pain added to already broken people.

If Dad ends up in palliative care or in the ICU, I will already be broken before he gets there, because right now I am very broken. I cried much of yesterday, and today seems like another day of crying. My eyes are swollen, I haven’t bathed in several days, the house is a mess, and I’ve been displaced in my own house. I don’t know when it will ever end, because even when it does end with Dad’s eventual death, my pain won’t end. It will only get worse.

Please see your patients and their families as potentially broken people? Don’t judge their actions as people who are completely in control of their lives, actions and emotions?

For you, each day in the ICU is a completely normal day. For your patients and their families it could be the worst day of their lives.

If they need things repeated, if they seem in a fog, if they snap at you, if they seem just “off”, it is because they are under stress. They could even be in shock.

Top 10 Reasons you don’t want to go to the ICU because of covid19.

Covid19. The virus that should have caused us all to stay home, and practice social distancing.

But let’s back up a few years….

When I was in the ICU, a dangerous internet challenge went viral. I heard people discussing it, and asking each other “why would anybody do that?”

If I hadn’t been on a ventilator at the time, I could have answered “because people don’t know what it is like to be that sick”.

Really, people think “I’ll get time off, maybe I’ll spend some time in the hospital and then it will all be over.”

WRONG! That idea is absolutely wrong.

You don’t want to be in the ICU for any reason.

Movies, TV, books… They all show a fictionalized version of the ICU, where patients are sick, they get better before leaving the ICU, and then they go on with their lives, as if being in the ICU is as life changing as getting a new car.

It’s more.

If you have never been in the ICU, you need to know, at this time, why you don’t want to be in the ICU, or cause anybody else to be in the ICU.

1.) Almost dying, is painful. It hurts. I thought somebody was trying to kill me. I didn’t know where I was, or why I was there.

And

Following that is the emotional pain, of wondering why you lived, and other’s in your situation didn’t.

2.) To be on a ventilator, you need to be intubated by having a tube shoved down your throat with enough force to reach your lungs. It scrapes raw wounds all the way down your esophagus, and causes pain that lasts about 6 months. Your throat is more sore than it ever was before, and it gets itchy as it heals. Very very itchy, and you can not scratch it. If you had any kind of gerd or acid reflex before being intubated, that acid also burns like like battery acid being poured on an already festering wound. That also lasts for about 6 months.

3.) A feeding tube, is shoved down your nose with the same force, causing the inside of your nose to also be painful and itchy. Note: They don’t give you painkillers for this either.

4.) You lose your sense of self. I couldn’t decide if I was male or female. I actually thought I was both. I also thought I was so evil, they put me in an induced coma to protect the public from me.

5.) Delirium is your worst horror movie come to life. You see coffins being rolled passed your bed, and people who aren’t real, but to you they are and the only reason they are there is to hurt you.

6.) Sepsis, a blood infection, is being seen in covid19 patients. Sepsis if not caught early enough, can cause brain damage, limb amputation and death. (See the uk sepsis trust website for more information).

7.) Recovering is not done in the ICU. It takes years to recover.

The ICU is there to get you to the point that you are not dying anymore. It is not there to return you to base point.

It took me more than 2 years to fully recover, and I’m still not recovered. There are still things that I used to be able to do that I can’t do now.

I’m not sure I’ll ever get to where I was before. I can’t walk around the block without wheezing. I can’t remember everything I knew before. I sleep more than I did before.

My right arm is still much weaker than my left. It tires much faster than my left, and it gets very painful when I over use it. Unfortunately I’m right handed.

8.) You won’t have the energy to leave your home after you get home from the ICU.

I had so little energy I wanted to outsource going to the bathroom.

I was so sick I didn’t have the energy to go to my doctor, for months after being in the ICU.

When I finally went I had to take my mother, because I didn’t remember many things.

9.) The ICU leaves many people with PTSD.

I have PTSD, from the ICU.

10.) The expense. I paid nothing, because I live in a country with socialized medicine.

If you aren’t so lucky and you get covid19, you will have a hospital bill that’s so high, you might have to sell your house, go into bankruptcy, or be in so much debt you’ll never get out.

The ICU is the most expensive hospital bed there is, because of 1 to 1 nursing, expensive equipment, and highly educated doctors.

I’ve outlined why you personally don’t want to go to the ICU. It’s also why you don’t want to cause anybody else to go to the ICU.

Practice Social Distancing.

Don’t go out until you need to.

Don’t visit without people who are not in your household.

I know it’s hard, but it is so much easier than the alternative: getting Covid19, or giving it to someone else.

If you want to know more about my experience in the ICU, you can read all about it in this blog.

Please share this, like it on twitter, tweet or retweet it or like it on this blog? Please tell your friends and family? You can also follow this blog if you like.

People need to know how serious this is, and the risks they are taking when they don’t practice social distancing and stay at home.

If someone benefits from my pain in being in the ICU, it will be worth it. I don’t want my pain to be useless pain that helped nobody.