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

Hi there. This is my first time on this blog. I wasn't even aware of this this site until yesterday, a year after I was released from 6 weeks in ICU with another 2 weeks in a regular room. I know nothing of this as I was either in a coma or fighting (without my knowing I was) for my life. I am so sorry for all who suffer from this very real syndrome. I started crying when I started reading your posts. I have all the symptoms and and truly thought I was crazy. I hope to learn from you all and maybe I can help in some way too.

Welcome to the discussion @smoky - I am glad you found us! You will likely see by reading through the many posts on here your feeling of being "crazy" is shared by so many others. Just knowing there are others out there - many others in fact - who have experienced what you are experiencing can be healing in itself. What are some of the symptoms of PICS that you are experiencing if you feel open to sharing with us?

Hi Annie. I ended up in the ICU from a horrible reaction to a pain med. prescribed for severe back pain. After 6 six weeks,some of the symptoms of PICS that I have are hallucinations or memories of the ones I had while in ICU (I don't know which), severe short term memory loss, the ability to speak sentences in the correct order only if I can think of the words, pain, dizziness, walking with a cane after using a wheel chair then walker, now cane, headaches. That's all I can think of at the present. I ended up with a trachea that after speaking with the doctors will remain for life. I am hoping to speak with "someone" at the hospital to set up or produce a pamphlet or something to give to those who are subjected to this syndrome. I think it would be a more proactive way to deal with this than to let the patient or family have to endure the side effects of the ICU.

Hi there, since i last posted i have been out of icu now 3 weeks, still weak but back at work 2 weeks. I still get chest and back pain but i think its from the acid reflux. Throat still sore from tube and funnily enough i have broken out in sores that look like pimples all over im assuming this is because my immune system still low. But on the up side im.alive and get to see my boys every day considerring the doctors did not think i would make it. My attitude to life has changed dramatically and my only thing i need to work on now is my anxiety after icu.... that is my biggest struggle at the moment. Pls tell me this is normal

Many people experience anxiety after ICU. I'm hoping @seanne will share more with you.

@andreab writes more about it in this blog
* Breaking it Down: Post Intensive Care Syndrome and Recovery - Emotions https://connect.mayoclinic.org/page/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-recovery-emotions/

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?

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?

@smoky, I applaud your efforts to inform staff at the hospital to help inform patients. It is quite possible that staff are not fully aware of PICS (Post Intensive Care Syndrome). The Society for Critical Care Medicine has resources to help develop resources for hospitals and clinics https://www.sccm.org/MyICUCare/THRIVE

@andreab, ICU Nurse Practitioner at Mayo Clinic, writes a blog describing PICS for patient, families, and health care professionals here on Connect:
- Post Intensive Care Syndrome (PICS) https://connect.mayoclinic.org/page/pics/