What did you find most surprising once you were out of the ICU?

Dear Colleen and Cindy,
I'm happy to do anything I can to help @cindyvag understand and cope with anxiety. So Cindy, here's for you.
First, please understand that I'm no expert on this. I'm just a fellow ICU survivor who, like you, was badly blindsided by critical illness and its aftermath.
Having previously never been seriously ill, I had no context for the anxiety, fear and other troubling emotions I felt afterward. And that lack of context was itself anxiety-producing. Would I recover? How much? Would the pain ever go away, and how long would that take? I'm sure you can relate.
Now, more than a year out, I've developed a couple of coping analogies. I live on the West Coast and have experienced several very serious earthquakes (including one that injured me slightly many decades ago when I was just 4 years old; I still remember the terror of it). With no warning, the earth suddenly shakes; the rumbling sound is overwhelming. You're thrown seriously off balance. You have no control. And you don't know if more quakes are coming that potentially could kill you.
People who live through multiple quakes come to understand that anxiety is a NORMAL psychological after-shock, a classic "fight or flight" response that nature has programmed into all of us as a survival mechanism.
We PICS survivors are like earthquake survivors -- traumatized first physically, then psychologically. Unfortunately it's both normal and terribly unsettling as we worry through every "after-shock" -- tiredness, fogginess, physical changes and most certainly anxiety. I think this anxiety is basically our nervous system's "fight or flight" reaction to the tremendous trauma we've been through.
But there's one significant difference between earthquakes and ICU after-shocks. In earthquakes everyone goes through the event together, thus they can relate and support each other.
But it's so different for us. Our traumas are individual, isolated, and afterward we can look OK although we're not...at least not in the first months afterward. That's why an online support group like this is so important. Do please keep checking back in and asking questions of the other "earthquake survivors" -- the people who understand what you're going through when others don't.
My other mental image of anxiety is of driving through fog. You know how fog can seem thinner, then get thicker, then thinner again as you drive along? Anxiety is like that, too.
Right now your anxiety is "thick" because you're just out of the hospital, your body is weakened and you don't know what to expect. Going forward you'll probably have days when your anxiety is "thin" and you're inclined to think hooray! It's over!
But this may be followed by other days when you start out good then something triggers you (the sound of an aid car siren will do it for me) and your anxiety gets "thick" again.
And unfortunately some days it's thick from the start and stays thick. So psychological recovery can be baby steps, some forward, some backward, for quite a long time. But eventually "the fog" does lift.
My advice, if you want it (up to you): Be easy on yourself. Take it slow. You're reacting normally to an abnormal event.
Don't expect too much, even when others around you might be expecting you to be "healed by now." As a woman this means delegating to others chores that you'd normally do -- and doing so with no guilt. None!
Realize that recovery isn't an event. It's a process.
One last thing. You mentioned that you've developed pimple-like sores on your body. I did, too. Turned out it was a drug reaction to a strong, new medication I needed to take post-ICU. My doctor switched me to a different med, and the problem was solved. But it took that switch to fix things.
I wish you all the best, Cindy. I'm sure there's a whole army of ICU survivors who'd link arms and give you a big, comforting hug if we could. So here's a "virtual hug." Can you feel it?

It's been a year and 4 months since I was in ICU, and I still avoid any and all invasive procedures, including imaging. I just explain to doctors that I have developed an aversion to hospitals, providers, and procedures. Some times I feel so sorry for what my body went through that I weep. Amazingly, the hospital where I had the open heart surgery apparently has never heard of psychiatric reactions to medical trauma, and could not provide me with any support whatsoever -- calls to psychologists were never returned, follow up with discharge planner was minimal, until I finally called the suicide hotline 2 months after the surgery. If you can do anything about getting providers to include PTSD from medical trauma or post- ICU depression in their care plans, do it. You can send them this posting. It took a concerted effort for providers to do something about post-partum depression, and now we must do the same for post-ICU depression.

Thank you for your concern. I finally found a counselor at another hospital who had the same surgery I did. He is very compassionate. I also tell every doctor I encounter what I went through, and let them deal with it. My friends who know me, and know that my husband was terminally ill at the time I was in ICU, still wonder how I survived the whole thing. My husband died 3 months later but I was able to be with him. Right now I am somewhat less depressed but still purposeless.

Thank you for your response and for sharing parts of your story and how you have worked towards healing. The narrative of what I remember (which is quite a bit, as the use of sedation was limited, although my mental status was definitely altered at times) is my starting point. When I feel ready, I think my medical records will be helpful in further understanding what I endured and clarifying the discrepancies that have come up in what I've been told and what I remember. While I asked a few questions along the way (such as what medications I was being given and where my central venous catheter for dialysis went within my body), I also was afraid to ask many things because I was afraid of the reality that I was almost certainly going to lose my life. Between how ill I was and my sheer terror, I wasn't very talkative. A lot of things weren't explained to me. For example, the process of dialysis was explained as it happened, but the fact that I was in acute renal failure was never actually stated until I saw my discharge papers. Somehow I never put two and two together! I have a very limited understanding of things like why I experienced paralysis or why they expected my respiratory collapse and obtained consent to intubate me. I remember two of the nurses from the ICU by name, one of whom held my hand while I finally broke down and cried after it was clear that I would survive the ordeal. That gesture meant so much to me. I'd love to talk to them. Perhaps I will look into that. I definitely plan to talk to my friend who visited as well. I took some photos myself as I recovered to try and document the experience for myself, the earliest of which have come to be significant to me. They are concrete proof in a sea of hazy memories and unanswered questions. Thank you again for sharing your experience and your advice - your suggestions are helpful things to think about in my own process of healing.

Alex, I hope that you've continued to heal since you wrote this post nearly 18 months ago! I laughed when I read that you didn't know you were in kidney failure. I had a similar moment, as I sat on my couch with my long oxygen "leash" that tethered me to 24/7 oxygen and read that I had Respiratory Failure! "Holy crap---I didn't know I had respiratory failure!" I said to my husband. He chuckled and picked up my oxygen hose and said, "No? What was your first clue?" (He'd had months to process that information, but I'd only been aware for a couple of weeks!)

I'm glad that you're taking pictures. I am doing the same; I even saved a "spare" tracheotomy set that I found in my bags of supplies from the hospital; it's a concrete example of what my body went through, even though my mind was often far away.

Hello Everyone. I am new to this discussion and all I can say after reading many of the posts is WOW! I have read many posts about knowing anything about PICS or having medical staff that know or understand PICS. You have been the trailblazers for patients like me that now get some information upon discharge. And to have the ICU Follow-Up Team with @andreab to introduce me to this discussion and help me start to cope with things. I have not been critically ill before my scary night of struggling to breathe nor have I ever had any chronic illnesses. Like many of you, I am struggling with not being able to "snap back" to normal within days of being released from the hospital. I have been back home for almost 6 weeks now and while I am doing well with my recovery some things are still affecting me.

For me the biggest thing I still struggle with is the fear and anxiety that it will happen again. I had Adult Respiratory Distress Syndrome (ARDS) and got sick fast with no warning. In less than an hour I went from feeling normal to not being able to breath. It is also hard for me to accept that some things like climbing stairs still makes me winded.

Adding a response to the original post on this board, I also found the transfer from ICU to a normal hospital room was a big change about the level of activity going on around you. I can say a comparison would be when I worked Black Friday in retail (ICU) to my current job quietly sitting at home working remotely on a computer all day (non-ICU). I was sedated my first couple days in the ICU so I was not awake for the worst of the it. And after I was no longer sedated, my whole ICU team was very calm and level-headed, there was still a sense of fast-paced activity.

The transition from hospital to home for me was that everyone around me was one extreme or the other. Either they treated me like I was no longer sick and "back to normal" since I was out of the hospital, or they treated me like I was so sick I couldn't do anything for myself.

Once I got home, I was not at all prepared for waking up in the middle of the night thinking I was still in the ICU. It took me about a week to be able to wake up and know I was at home. One thing still happening that I am struggle with is that I feel like I am actually losing my memory of what happened while I was sick. I am finding out more information that sometime contradicts my memories so I don't really trust my memories of that time any more. And I am realizing that the memories I do have do not accurately reflect time. It is things like thinking I was only in the ED (emergency department) for a couple of hours before being transferred to the ICU when in reality the line between what was the ED and what was the ICU is completely blurred (or missing) in my mind. I remember being loaded into the ambulance but don't remember being rolled into the ED. I remember being taken for a scan of my lungs but don't remember getting back to a room. I remember being placed on a c-pap machine but don't know if it was the ED or ICU. This was all on a Sunday. I don't have any other memories until that Wednesday. They told me I was sedated but that for 2 days they would bring me out of sedation for a little bit through the day. I have zero memories of that. I actually felt bad when someone who helped move to out of the ICU told me she was there on Tuesday and I had tried to write someone down and ask her something. I had to admit I had no memory of doing that.

Thanks again to everyone who is sharing their story here. I hope to be able to come back to here and post more and read more as time passes.

Jennifer