10 Good things that ICU and hospital staff did:

It’s been more than year of a really stressful pandemic, that has made millions of people sick, many of them being admitted to the ICU, and many dying.

ICU’s are more full than they ever have been before, creating impossible workloads for many ICU staff.

I’m having a hard time too. Sometimes it feels like my heart will just burst of sadness and other times I’m so agitated that small things like the ever growing pile of laundry seems so monumental that it’s unsolvable.

The world is falling apart, with political changes and undercurrents, outward proud racists seem to be increasing in numbers, mass shootings, and many other things splash across our news screens everyday, making the world seem hopeless, and ending.

When I got out of the ICU, I typed in the hashtag #ICU into twitter, and was introduced to the wonderful world of tweeting ICU staff. So many of you were so kind and generous with answering questions, and many of you followed me back.

When I started this blog, you read it, retweeted it, liked my tweets and responded to my tweets. You let me know that what I was saying was important, and you listened.

Thank you. You helped me to emotionally heal a bit (not all the way yet).

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I’ve been trying to think of a way to give back to you, during what must be a very stressful time for you. It’s stressful to be in the ICU, and to have family in the ICU, but it’s also stressful to have a suddenly increased workload, be wearing so much PPE that you look like space martians, and then be told that Covid is all a hoax, the hospital’s are empty and you are lying about that workload.

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I have always wanted to help people with this blog. Improving the ICU for those that come after me is the very reason I write it. I admit that each time the viewership goes up, I get a little emotional energy jolt, but that wasn’t the reason I started it. It’s also not the reason I haven’t given up on writing it, even though my life has gotten harder. I feel guilty that I’m not able to write in it as much as I used to.

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Hopefully this list of good things that happened in the ICU and in the ward after the ICU makes your load a little bit easier to carry and your heart smile just a bit for just a while.

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1.) I am alive. I did not die in the ambulance when I stopped breathing. I did not die on Christmas day when I crashed.

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2.) I was so out of it. I knew that occasionally there were people who stood at the end of my bed and talked, but I didn’t know who they were or what they were talking about. I thought maybe they had their staff meetings there.

One day my nurse leaned over me and said “the doctor’s are going to be doing rounds soon. They will stand right there,” she pointed, ”and they will talk about your case. You can listen because it’s about you. You can also ask questions if you want to.”

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3.) I couldn’t speak because I was still intubated. I asked for paper and wrote “I’m sorry.”

My nurse looked at me and asked “Why? You didn’t do anything wrong?”.

“I’m sorry for being racist.” I wrote.

“When were you racist”, she asked.

“When I sang racist songs to you.” I replied.

“You weren’t racist. You didn’t sing anything racist. You can’t sing. You can’t even talk. You have a tube in your throat that prevents that. You’re writing this down to me right now.”

“Oh”, I wrote, and leaned back.

She didn’t say I was the worst person in the world, because I was racist, which I feared she would. She didn’t laugh when it was obvious I was talking about something that didn’t happen. She continued to treat me very well, without resentment. She was one of the best nurses I had and I really really liked her.

Note: This will make much more sense if you you read My ICU experience in chapters, on this blog. There you will see that under sedation I didn’t know if I was male or female, and didn’t know if alive, dead of in purgatory (I’m not even Catholic). It was a complete loss of self, including my believe I was the worst person in the world who was a racist, and was so bad, that the doctors decided to keep me in a permanent coma to protect the nurses.

Although my nurse didn’t know this, and the apology made no sense to her, she didn’t take this apology the wrong way, and I am very grateful.

Over the days after I woke from sedation, her face became a reassuring symbol that I was safe in her care.

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4.) When I was sedated, and totally out of it, a nurse washed, and braided my waist length hair. She even put her own scrunchies and barrettes in my hair to make me “look nice”. That touched my parents so much that they told me about it several times.

To be perfectly honest: It’s not waist length anymore. I got it cut to be layered and about 6 inches shorter about 3 weeks ago and it still seems really short, although to others it’s probably still long.

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5.) When I asked for information on twitter, you tweeted me studies that answered my questions. I needed to understand and I wanted to tell the world about what the ICU was like, and you helped me to do that.

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6.) When I tweeted asking about the long term effects of sepsis which I got while I was in the ICU, you told me about the UK Sepsis Trust, where I got all the information I needed.

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7.) An ICU doctor told this joke “An ICU doctor went to a conference. His wife was worried about being lonely when he was gone. He told her to get something to keep her company while he was gone. When he came home, he found his wife in bed with another man, and yelled “A dog, I meant you should get a dog to keep you company, not a man.”

Yep it’s a corny joke, but it and all the other corny jokes he told made me smile. He started each day with a corny joke that made everybody laugh, and I’m sure he didn’t realize his patients heard him, but I did, and it brightened a part of each awake days there.

8.) I have started many tweets with “As a patient, I”. You considered and respected one patients point of view. Thank you.

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9.) I laid in my ICU bed. A nurse took a Christmas mint out of a pile of Christmas mints and put it in her mouth, before coming to my bed and leaning over me. The smell made me want a Christmas mint, which I love.

She must have realized this, because she walked to the garbage and spit it out, before coming back to me.

That small kindness, did not go unnoticed

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10.) I wanted a pen and paper almost as soon as I woke up from sedation, and I was freely given a pen and as much paper as I wanted. I still have those notes that I wrote about what happened under sedation.

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Hopefully this brightened your day a bit. It brightened my day to write it, so much that I continued after 10 and wrote 20 things.

I will post the first 10 now, and the next ten when I have time (hopefully tomorrow).

If this made your smile, and helped you please help other people by tweeting good things that happen in your ICU, with the hashtag #GoodICU and / or sharing this blog post in any way you can.

What to tell your loved one in the ICU.

I stood at the nurses station, swaying at bit, from the unsteadiness that started in the ICU, and watched a nurse write my request in a big blue binder. “What is that”, I asked.

“It’s your binder.”

“What’s in it?”, I asked.

He used the fingers of his right hand to ruffle the pages of the binder, “It’s the history of your stay here. Everything that happened to you, is written in here.”

“Can I read it?”, I asked.

“You don’t want to read this.”, he replied, which is a strange response since I just asked if I could read it.

“No I want to read it”, I said.

He continued trying to talk me out of reading it, but I knew the law and said “It’s my file, and the law says I can read anything that’s about me.”

“You’ll have to fill out a form to get a copy.”

“Give me the form.”

“I’ll get it to you later”.

I wobbled back to my room, still feeling extremely unsteady, as if I might fall over at any minute.

He never did bring me a form. Everyday I went to the nurses station and asked for a form, and everyday I was given a delay tactic.

When I got home from the hospital, I complained to one of my doctors about not being able to read my file, and he told me what website to go to get a form. I filled out the form, paid the money, and got the file.

I wanted that file, because I did not know what happened to me. I had a vague idea, but not enough to satisfy my questions that nobody was answering.

My family would probably have answered the questions by that point, but our area of the world had a cold front at that time, preventing most cars from starting and many roads to be closed.

What should be told to an ICU patient and when? That was a question asked by Dr. Megan Hosey that said “Family members of ICU patients commonly ask me “What should I tell them about the ICU and when?”, before following up with a tweet that asked ICU survivors what they thought. (I would link the tweets here, but I don’t know how.)

Thank you Dr. Hosey for the idea and allowing me to respond to your question in a blog post.

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I had no idea what happened? I had no memory of the days before I entered the ICU and my memories of being in the ICU were delirium filled.

Before I woke from sedation I knew on some level that I was in the hospital, but I didn’t know why. At some point my brother told me I had started smoking and it was my fault I was in the ICU. That wasn’t true. I’ve never smoked in my life.

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While your loved one is under sedation talk to them and tell them:

1.) Where they are

2.) Why they are there

3.) Why they can’t move (bed restraints, sedation, ect.) Why they are in bed restraints and or under sedation. Don’t let them think it’s because they are a bad person, somebody is trying to kill them or anything else like that.

4.) That they might have delirium what they see might not be real. (I saw all sorts of things, that you can read about in the blog – both written now and written in the future).

5.) Who is visiting

6.) That you love them.

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When they wake up from sedation:

7.) Repeat the information above, because it might not be remembered from one day to the next. I seemed to have lost my object permanence when I was in the ICU and for months afterwards. If something wasn’t right in front of me I simply didn’t think about it. I brushed my teeth, if I saw my toothbrush in the morning. I had to keep my pills on the table where I sat or I’d forget to take them all day. I ate only when I was hungry, because it was hunger that reminded me I needed to eat. Because things are so easily forgotten when a person is extremely sick, things will need to be repeated.

8.) The time and date.

Time does a strange little thing in the ICU. It’s hard to understand, but it bends and becomes non-existent. At one time my brother was there, only he was a child, and his son was standing beside him, the same age as he was. Without clocks or calendars time becomes even more confusing that it already is. Many ICUs don’t have windows and the lights are on all day and all night long, making any way tracking time difficult. Help your loved one to orientate to time, by telling them the time and date.

9.) Answer any questions about why they are there.

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After the ICU but in the ward.

This is where I wanted more information, and started asking for my file. I still had a bit of delirium but I knew that the clock wasn’t really sliding off the wall. It was just because I was seeing things.

10.) Tell the person what happened.

11.) Answer all the questions asked.

12.) Tell them about delirium, and that what they are seeing and hearing might not be real. They don’t need to be afraid of it either.

On my first night in the ward, I called a nurse in and asked “Are there fire works on the ceiling, or am I developing schizophrenia”.

She asked “Why do you think you have schizophrenia?”

“Well because I’m seeing fireworks on the ceiling, and I don’t think medicare pays for such fancy light shows in the hospital. That would be a waste of healthcare funding.”

“No,” she said, “the health region does not pay for light shows in the hospital, but you don’t have schizophrenia either. You have been through a very traumatic event and the brains way of dealing with that is to see and hear things that aren’t there.”

“Ok.”

“Do you want me to get some medicine to make it go away.”

Still watching the light show I said “no, I’ll just enjoy my own private fireworks shows. As long as I’m not getting something else wrong with me. I didn’t want to deal with getting schizophrenia that’s all.”’

The patient across the hall laughed, and the nurse smiled before saying “ok, enjoy the show”, and I did, that is until the not so nice stuff started happening.

Once I knew that I was seeing things, and was not developing a mental illness, the delirium was easier to deal with.

I do wish the nurse had called it delirium. It wasn’t until I got home and read tweets on twitter, that I realized it was delirium.

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After they are home:

I am guilty of this as well. Before I got sick, my mother was in the hospital for 100 days because of a major brain illness. She remembered nothing about what happened when she was sick. When she got home from the hospital she asked questions about her illness almost everyday. Many times it was the same questions.

Although I answered her questions and talked about it when she wanted to talk, I was frustrated, and I don’t think I did as well as I could have.

When I got home from the hospital, I understood and felt a tremendous amount of guilt for not being as patient as I should have.

Thankfully she was more patient than I was, and answered my questions again and again.

It’s hard not knowing what happened, why it happened, but also having this false delirium induced memory of what happened.

13.) Allow the person to discuss that delirium. It may not have happened to you, but it happened to your loved on, and it was scary, and horrifying. It’s a trauma in an of itself, and it can cause PTSD. I was diagnosed with PTSD from my ICU experience. Sometimes calling it delirium seems like a lie and a threat to me, because to me it really happened, and to me it still hurts a lot.

14.) Help your loved one get their own file if they want it, and allow them to read it at their own pace.

15.) Show them pictures if you took any.

My mother took pictures, and I copied them onto my phone. I still look at the often. At first I looked at them almost everyday.

16.) Tell your loved ones, months and years later, that it’s ok to still think about it, wonder about it and ask questions about it. Don’t expect your loved one to be over it. To them it is not in the past. It happened. I think about it everyday and if I allow myself, I feel the pain of it everyday. Things have moved on with my family, and I feel the need to move on with them, but it’s not something I’ve gotten over. I still want to talk about it, write about it and deal with it, but I also feel selfish for wanting to.

Thank you for reading this. If you want to know more, you can read more of this blog, or follow me on twitter for updates. If want to be mentioned in my blog twitter updates, let me know.

Please like this blog post or tweet the tweet it was mentioned in, and share this blog with others? You’re sharing it and liking it, encourages me to keep writing and makes me heart smile.

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.

I yell profanities at my organs.

I was born with internal differences to my organs.

One of my organs is a complete brat, who stands up and yells “Pay attention to me. ME ME ME! I need to be the CENTER of attention. It’s all about ME. Only ME!”, whenever any other part of my body is sick and needs attention.

And I end up yelling “Fuck You (name of organ)”, to my organ. Sometimes it’s an entire paragraph, of “Fuck You. You are not the centre of attention. It’s not all about you. Do not bother me.”

But of course it is… partly.

That particular organ has gotten a lot of attention, and is by now it completely used to demanding my life revolve around it… maybe I should be too.

I’m not. I’m angry with my body. I can not and will not embrace my body, and not because of it’s looks, weight or any other superficial reason.

I will not become “at one with my body”, or any of those other hokey euphemisms healthy people tout without knowledge.

I will not accept my body is me, because I’m not broken.

I may be flawed, I may have grumpy days and days that all I want to do is cry. Everybody does.

But I am not as broken as my body.

I have always known that my body and me are separate. Even as a child. That’s why I can yell “Fuck you”, to my different organs, without saying “Fuck you”, to myself.

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I wish all health professionals knew what it was like to be sick, to have an organ or body part that doesn’t obey, to know that the body and mind are not one, and to know what it’s like to just get up in the morning and ignore aches, pains and illnesses until it can no longer be ignored.

I wish they understood that dilemma when asked a piece of medical history. Should I mention it? Is it related? It’s really to do with this other problem I’ve already been diagnosed with? Will it just muddy the water?

If I mentioned everything in my medical history, you and I would be in that examining room way too long. Try all afternoon.

And then there are the times I just simply forget to mention things because I’m so busy ignoring them that I’m still ignoring them in the examining room.

One specialist doctor asked so many rapid fire questions, I didn’t have time to think about any of the answers. After 10 or more questions quickly fired in my direction, she told me there was nothing wrong with me, and not to waste her time.

She asked so quickly, I got anxious and answered all the questions wrong. I asked for a second opinion but the second specialist, looked at the notes of the first doctor and said “I talked to Dr. So and So. These are her notes, and I agree with her, but here’s some medication you can take.”, handed me a prescription and got up to leave the room. I followed because I had no other choice.

I still wonder if both doctors are wrong, but with her notes, whatever they say, every specialist in her field in my city, who all work out of the same hospital, are going to agree with her. Asking for a third opinion is a waste of everybody’s time, and the systems money.

My family doctor agrees. He thinks I do have the problem he originally sent me for, and is trying to manage the problem without the direction of a specialist, but why should he have to? Why should one doctor’s complete ignorance about what it’s like to answer those questions when you have been sick all your life and have multiple diagnosis’s, get in the way of my health? Why should she have so much power?

Maybe if she understood how difficult it is to answer questions delivered so quickly when you’re asking yourself so many questions about how to answer them, she would give her patients time to think before she asks another question?

I really do wish that all medical professionals were given a drug with a half life of 2 weeks (or even a month), that made them chronically sick for that time period. I want them to wake up in pain, and consciously think about getting out of bed, before they do it.

I want them to have a handful of pills they have to take multiple times a day, and figure out how hard it is to remember each and every dosage, each and every day.

I want them to know what it’s like to be hungry, know you have to eat because not eating will make you sicker, but not have the energy to cook something. Finally you just pick something from a box, put it in the oven and forget about it until it’s ready, but it causes guilt because you know you need to eat better, and unhealthy food might make things worse, but it’s better than eating nothing, because if I eat nothing I can’t take my pills and then…. And the thoughts go in circles of guilt.

I want them to know what it’s like to be too tired to exercise, but feel guilty that you aren’t exercising because you know you should, and then have to explain that to somebody who judges when they “how much exercise do you get”, at your next doctor’s appointment.

I want them to understand how much guilt there is in being sick.

I want them to know they don’t have to add more guilt, and that adding guilt doesn’t help me to be more “compliant”, to only makes it harder.

I want them to know how chronically sick people can be caregivers of even sicker people in the family, put themselves last, and feel guilty about paying attention to their own health problems (even mentioning them), because somebody else is sicker.

I want them to know what it is like to calculate in your head, how much energy it takes to go to the bathroom, and then figure out if it will take more or less energy to return to the place you are when you’re done or just go to bed.

I want them to know, that they don’t see patients at their sickest (unless they are in the ICU), because patients who are really sick, don’t have the energy or health it takes to get dressed, get in the car, drive to the doctor, find a parking space, walk to the office, and see the doctor. Instead they wait until they are feeling healthier to either go to the doctor or just forget about it and get one with life. Or they get so sick they can’t stand it and get somebody to drive them to the emergency room.

I want medical professionals to take a drug, be this sick for a month, and truly understand what it is like to be chronically sick.

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Until you know what it’s like to yell one of your organs with frustration, anger and desperation, and understand what it’s like to be sick (from experience) don’t judge me.

My ICU Experience Chapter 6:

The Chapters form is back, well at least for now. I’ve been stuck on it for so long. Hopefully you’ll see chapter 7 next week.

Of course, there is one thing I learned during this very chaotic time in my life: never make plans. If I make plans something will inevitably make this plans impossible to actualize. If I don’t make plans, I’ll have a good day in which I could do something.

At least that’s the way it seems to be going lately.

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If don’t know about my Chapters, I am writing my ICU experience in chapters, like a novel, because I have novel writing exprience. You can read chapters 1 to 5 by going to the heading “my experience in chapters at the top of this blog, and I encourage you to do so.

Everything that happens in the chapters, happened to me while I was in the ICU. Some of it was because of sedation, didn’t actually happen, but it happened to me, as real as anything else happened to me.

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My Experience in Chapters – Chapter 6:

I turned from the nurses, who were talking about urine feeds, and followed a empty hospital hallway. As I walked the hallway turned to sand, and the sand turned to desert.

A crowd of people, wandered through and sat at tables in the sand, at outdoor restaurant, entirely made of sand.

A little girl came up to me took my hand and said “Come with me”.

She lead me through buildings and a street made entirely of sand, until I came across my cousin, who greeted me and introduced me to his husband Avers, and his children: a three year old and a baby.

My cousin lead me through the sand, to a mansion made entirely of sand.

“Sand?” I said “You made a real sand castle?”

“Ya isn’t it great? When we get tired of part of it, all we do is tear it down, and build a new part of it. The sand is free. We can add as many additions on to it as we want. Come in.” He lead me to the door, but the idea of being in a sand castle, unnerved me a bit.

I stopped at the door, and asked “Won’t the sand collapse in on us?” I asked.

“No, no, this is a new way of building with sand. It won’t fall until we want it to.”

Still skeptical I followed him in. It was gorgeous. The kitchen, with sand counters, a sand table, sand chairs and sand appliances, lead into a patio that overlooked the beach. As I sat and visited, I watched the water lap into the shore.

“It’s nice for swimming.” I commented.

“Oh ya, the children love to take swimming lessons.”

“I can imagine” I said, as I recounted my own experiences with swimming lessons.

My cousin, and his husband told me about their children and their lives living in this land where everything was made of sand. I started becoming less and less involved, and more and more like I was watching it on a TV, but not apart of it.

I watched cousin take his 3 year old daughter, to a fashion company to design a new nail polish, that marbled as it went on the nails.

She enthusiastically designed the entire nail polish from the colours, how it would marble, and what the end product would be like. Although she was only 3 years old, she acted like a miniature CEO, making all the decisions with the aid of woman who worked for the fashion company.

Her face was put on all the ads and she was made the new “it” girl. This was famous three year old, who everybody wanted their child to be like, lead the fashion industry, and made all the money for the family.

As my cousin was pouring all his attention into his 3 year old, this nail polish (that the fashion company was backing), a famous billionaire (who I won’t name because he really exists), stole the land my cousin and Avers bought, as well as the sand castle on it, and the baby in it.

My cousin took his 3 year old, left the fashion house, and tried to get his baby back. The famous billionaire refused to give the baby back, or to let anybody go and get him.

Just as my cousin’s baby was crawling through sand, perliously close to the ocean with the tide coming it, I was screaming “he’s going to die”, as my cousin hired a helicopter, parachuted on to the beach, grabbed the baby, and ran away.

When my cousin and his daughter returned to the fashion company, they had already moved on to the new “it” child who was even younger and cuter.

Having spent all of their money, my cousin and his husband, tried to make their baby the new “it” child, but were told there the baby was too old and there was a 10 year waiting list for “it” children. They would have to audition a baby that wasn’t born yet, time the babies birth for just the right time, and then go through the process again, if they wanted another “it” child.

Deciding they couldn’t wait 10 years they, found another way to make money and rebuild their lives.

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Note: Although this particular cousin doesn’t have a husband or children, it didn’t register as odd that he did at the time.

Note #2: I shortened this storey. As you can see it’s not in novel form. I stuck trying to decided if should even include this storey, because it is so odd and unlike the rest of my ICU experience. I wonder if it was a dream. Why did I fade from my own storey, and become like I was watching it on a tv? Why did it include people who didn’t exist? Why was it so detailed? If I’d written it with dialog it could have become fantasy novella.

In the end, I need to unstuck myself and because it happened in my sedation and is apart of my ICU experience I will include it, even though it is very weird.

Note#3: As always please share this blog post with others.

Thank you for reading and thank you in advance for sharing it.

Ten Reasons You Need Visitors to help with your Workload during Covid.

1.) It helps the already overworked staff.

Visitors can get ice water, ice chips, warm blankets, toast, snacks and other things.

I know that hospital staff are overworked during Covid. Work loads are reduced when visitors get these things.

I know that some visitors are more work than any thing else.

When Mom was in the Rehab hospital, there was a family who was told they couldn’t visit, because too many things went missing (including medication) when they were there.

But… the trustworthy visitors can save you time, and energy, by getting things when the patient needs them.

I still remember the passcode to the door of the kitchenette when Mom was in the main hospital, before she went to rehab. I didn’t give it to other families, but I did get things like toast, boost, and puddings for Mom. Because she wasn’t eating, we were encouraged to offer her food several times a day.

My getting her things made their workload lighter several times a day.

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2.) Happier patients are healthier patients.

A hospital room can end up feeling like a prison, especially during days without visitors.

Mood and attitude affects health. I know this from experience, because I’ve been sick all my life.

I clearly remember as a young child figuring out that focusing on my pain and illness only made it worse, and ignoring it, allowed me to play with my brother for longer periods of time. (You can read the blog post “The Week Before I Went to the ICU” for more information).

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3.) Happier patients can decrease the length of the hospital stay.

When I had surgery as a child, they expected me to stay in the hospital much longer than the 28 days I did, after surgery. I believe the difference, is my mother, although pregnant with my brother at the time, had only one child outside the whom. She was able to stay at the hospital 24 hours a day, sleeping in the bed beside mine.

Originally she slept on an air mattress beside my hospital bed, but during the first night, when my mother was pumping up her air mattress for the 2nd time, a nurse offered her a hospital bed, and tied the two beds together. (If you are that nurse, and are reading this – thank you).

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4.) A positive mood, makes a more compliant patient and a less grumpy patient.

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5.) A visitor can sometimes give a more complete story, than a very sick and confused patient. This aids in diagnosis, treatment and compliance.

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6.) Staff can not be with patients 24 hours a day. Visitors can.

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7.) When the patient is discharged, the family will need to know what happened in the hospital, and how to take care of the patient when they are at home. They can not do that if they were not there and do not know what happened.

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8.) When the patient goes to their family doctor, a specialist appointment or returns for another hospital stay, the visitor can tell the story of the hospital stay.

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My mother does not remember what happened when she was in the hospital. She has no memory of that entire year, of many of the acquaintances she had before, of many family events and many other things. Her normal pressure hydrocephalus took a lot of those memories away.

I remember, because I’m was her caregiver.

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9.) Adequate treatment partly depends of an accurate storey.

When I take Mom to emergency and hospital appointments now I am not allowed to go in. She gets inadequate treatment, because she doesn’t remember her own medical storey, and I’m left trying to explain it to the triage nurse before she she even sees the doctor. I can’t anticipate every question the doctor will have and there isn’t any privacy outside emergency room doors.

Depending on how she’s feeling that day, she doesn’t always tell what she does know accurately.

It is not fair to deprive her of a full and complete medical exam.

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10.) Recovery depends on a will to live.

I know when I was in the ICU, the hospital staff worked hard to make me live, including putting me on a ventilator, and countless other machines, as well as using the crash cart, jumping on top of me and doing stuff to save my life when I crashed on Christmas day. (My mother was surprised at how quickly “30 people where there” and how “that one man jumped on your chest”).

I also know I was fighting to live with all of my being. I fought so hard to wake up, to live, and get healthy again. I knew I was dying. It’s so hard to explain, but I know if I had wanted to choose to die, I could have.

If when faced with the choice to keep fighting or just let death take over, the patient is wondering where they’re family is, death would be an easier choice to make. Certainly it would be much less work.

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Note #1:

If you are confused: I was Mom’s caregiver when she had Normal Pressure Hydrocephalus, and a few years later when she recovered enough to take care of herself, I got sick and went to the ICU for an allergy I didn’t know I had. When I was discharged she became my caregiver. When I recovered enough to take care of myself, my father was diagnosed with a terminal illness, and my mother and I are his caregivers now. The lives of caregivers and patients can overlap, and roles can dramatically switch.

My mother and I both might be able to take care of ourselves and are currently caregivers for Dad, but neither of us are fully recovered. Hopefully we will be in the future.

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Note #2:

I know that having visitors during Covid is complicated, but it’s very important, and I implore you to find a way to allow at least one visitor per patient during this pandemic.

It will help your patients and your staff in so many ways, especially, chidlren, teens, seniors, the critically ill, and those with cognitive issues.

I know you will have to screen visitors, because bad visitors can make things worse for everybody.

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Thank you for reading this. Please share it however you want. You can retweet, or like the tweet you read this in, share it on your other social media platforms, or follow this blog.

I will try to post something written by me or a guest blogger every Friday (which I have no realized that for some of you is Saturday, because my Friday night is some people’s Saturday mornings).

On a personal note, my life has become very stressful, and small things like getting dressed (when during covid I have nowhere to go), and doing anything more than watching streaming services when somebody doesn’t need me, is becoming harder and harder.

If you are reading this an are helped by this, please let me know, by commenting, retweeting or sharing this. I need the encouragement. If you have any idea how to get out of this sadness, let me know, even if it’s just a cute video, or useful advice.

Thank you.

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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Share your storey. Tell it to as many people as you can. Write it in a blog, or a letter to the editor, or in any other way you can.

You can share this blog post by tweeting, retweeting it and liking it on twitter, and sharing it on your other social media platforms.

If you like this post and want to read more like them, you can follow me on twitter, or on this blog itself.

Thank you for reading.

Children, Doctors and Consent

As I’ve said before, my time in the ICU was not my only time in the hospital. I was born sick and was a sick child, who had many surgeries.

This one is not going to be about the ICU. It’s going to be about the time I spent in the hospital after my major surgery when I was a toddler.

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“Rain rain go away, come again another day”, I sang out to a doctor as I slid under my bed.

He commanded me to come out, but I refused.

He wasn’t even my doctor. I didn’t even know him, but he wanted to learn from me, and I refused. I would not come out and my mother refused to make me.

Instead she responded by saying “she may not be 3 yet, but she has a right to say ‘no’”, and told him to go.

As a hospital staff member, you might be reading this thinking I was a brat. As my mother was telling me this, she laughed thinking how cute I was.

I’m not a brat, and I never was a brat.

Before you judge a sick child’s brattiness, consider what it is like to be a sick child, and what you want that child (all children), to know about their own bodies, an boundary’s.

I was almost three, small for my age, and in my own way saying “no, I don’t want you to touch me right there, right now”, and I had a perfect right to do so.

I understood I was sick, and that I had been sick all my life. At almost three, I was a medical veteran, who had more medical procedures, surgeries, medications, doctor’s visits, sick sleepless nights, and pain than most adults have ever had in their lifetimes.

At that time I was saying to a stranger “no, not now, you can not touch me”.

My mother was making people respect my right to say “no”, and to have control over my own body. My body wasn’t a learning tool for some resident who wasn’t even part of my surgery team to look at, prod and learn from. I wasn’t a textbook, or stethoscope. I was a developing child, whose mother recognized was learning about how to be a person and eventually an adult from that moment. She was allowing me the privilege of saying “no, you can’t touch me”. And she was absolutely right.

It doesn’t matter than she was inconveniencing and even angering medical staff. They are adults. They’ve already learned their bodies were their own, and about consent. They weren’t being asked to be touched, and examined and have medical gowns pulled away to expose bare skin. They were not the ones in their formative years.

My mother was teaching me what consent was and that saying “no” to being touched is ok.

Maybe thinking about consent with a toddler is, uncomfortable to think about, but sick toddlers grow up to be adults, and if those children have learned as toddlers that they don’t have a right to say “no”, and that they can be touched when ever and where ever a stranger wants to touch them, and that they are “brats”, if they don’t concent, how are they going to apply that when they are adults?

If your a child who has already been told your consent doesn’t matter, how will you respond to a pedophile?

If you’re a teen who has learned as child that you can’t say “no”, how is that going to affect sexual exploration?

If you are an adult, who has already learned, that you don’t have control over your own body, how is that going to affect your ability to distinguish abuse from normal adult relationships?

Children are growing, learning and understanding the world around them. They are not little science experiments, or textbooks. They are not work places.

They are people, who deserve the right to grow up, in control of their own bodies. Do not break their spirits in an attempt to fix their bodies, or worse, learn from their bodies.

If you work with children, in a hospital or medical setting, remember that. Please see your child patients as developing and learning from everything you do, and ask yourself “what you do want them to learn from you?”.

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Thank you for reading this. If you like this post, please share it by liking it, tweeting it, retweeting it, or any other way?

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I haven’t posted regularly before, but my posts will appear in Friday’s from now on.

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.

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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.

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

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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.

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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.

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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.

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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.

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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).

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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.

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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.

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9.) The ICU leaves many people with PTSD.

I have PTSD, from the ICU.

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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.

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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.

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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.