Good Morning, @sacker. Welcome to Connect. I have not experienced exactly the same thing as you, but I have experienced some of the same feelings. I was diagnosed with a liver disease and no one believed I had anything wrong with me, so I quit telling them. To make it even more complicate, it was a rare disease which added to my fear. When my symptoms became obvious and my health deteriorated, they wanted to know why I hadn't told them. It was frustrating when some of them started to look at me differently, and treat me differently.
I have since received a transplant, and I think of it as being a chronic condition in the sense that I will have to be vigilant and be on medications for the rest of my life. My dear husband is the one who stood at my bedside and suffered every moment of my struggle, and has dealt with the fear of losing me. It is difficult for him to talk about, even now, 10 years later. He is the one who insists that I slow down or call the doctor every time I show any sign of anything that he considers unusual. I do get upset sometimes because I feel he is hovering over me, but then I have to remember that he is right and does it out of love.

Do you have any girlfriends, someone who has been thru a serious health issue who is understanding of your feelings that you can download all of this on? My girlfriend with terminal cancer was my strength.

I want to share some places where you can find information and meet others who might have experienced a related cardiac condition.
- Groups -n Follow the groups that interest you. Choose from the groups below or search by keywords.
https://connect.mayoclinic.org/groups/
Pages - Browse Connect pages for newsfeed posts from Mayo Clinic experts. You'll also find useful resources and information.
https://connect.mayoclinic.org/pages/
I believe you.

@sacker, this may sound glib, but this experience will make you a better provider. I bet @andreab and @milindohope83 will have more to add to your message.

Until they join us, let's talk about where you're at today. You have identified that you have PICS. That's step 1 accomplished! You found this online forum to support you. Step 2 done! So now on to Step 3. Keep posting and let us accompany you as you walk this path of acceptance and healing.

You said "I am 45 years old and not ready to be one of my chronically ill pts." I get that. You're the person that helps, problem-solves, cures and so much more. By understanding what you're going through, how will this make you a more empathetic provider? You said you've become fearful, irritable and mean. How do you reframe your situation to be kinder to yourself?

Does this resonate or just sound glib? Be honest.

Sacker, Hi, Wow I totally get your frustration and anger, there should be a clearinghouse, somewhere folks suffering from PICUS can get answers on nutrition and oral supplements, because just upping calories will put on fat not functional muscle. After an ICU stay especially on a respirator muscles go into catabolic state and from what Ive read can continue in that state. And physical rehab, athletes have resources to measure their lean muscles and track their gains. Why are we not prescribed supplements geared to the needs of PICUS people, modern strength and endurance training like athletes have? My husband is 70 but before viral pneumonia he was very active and vital, now he doesn’t want people to see him in his weakened state. He has made improvements but they seem slow and he’s scared he will never get back close to what he has lost. The people on this forum are awesome and give moral support, and have given me great pointers and insights into what my husband is going through. I know we are not the only ones struggling. We have an appointment Friday with PICS Recovery Clinic at Vanderbilt I am praying they have answers and the physiologist is someone my husband feels comfortable confiding in. I’m sorry if I rambled but you were the first person that alluded to frustration and anger, I felt despite our almost 30 years difference in ages I get it.

Hello @sacker . I apologize for the delay in my response and also want to thank you for joining this conversation and sharing your insights. I was away at a conference by the Society of Critical Care Medicine. I do a lot of work with many great people at that organization through the Thrive collaborative where we focus on helping people recover from critical illness to the very best of their capacity. I want to share some important links with you that I think you might find helpful. The first is from our Mayo Clinic Connect page and it is a quick overview of PICS - the active links within this blog will send you to the related page for more detailed information: https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-wrap-up/

The other site I want to share is the Thrive site by SCCM. Explore this page as well, I am sure you will find helpful information: https://www.sccm.org/MyICUCare/THRIVE/Post-intensive-Care-Syndrome

There is a lot of information out there, but one of the most important things for you to know at this time is that you are not alone in feeling this way. While I was at the conference, I heard a very powerful statement given by one of the leading experts in this area Dr. Iwashyna. To paraphrase, he said: "Just because you are not who you were, doesn't mean you cannot become a new version working off of the many strengths that you have".

Over and over again we heard from experts and patients alike who shared and acknowledged that previous "normals" no longer exist after critical illness. At least in the short term. And this can be devastating to many people, especially if you have not been forewarned. I am hopeful that you will find this forum and the information that I shared with you helpful and healing. Please continue to reach out to everyone in this group - there is so much power behind these connections.

I had a critical illness in 2014 and was diagnosed with PTSD. I found my own therapist also since no one in hometown including my ICU doctors have heard of PICS. But after a one false start with a therapist who tried to convert me to her religion!! I landed with a therapist who treats mainly sexual assault survivals. For me, it seems to be a good fit. Trauma is trauma. Meds don't do well for me either and if I felt the need for them my PCP would help there. My therapist and I have been navigating this trauma fairly well. I get really frustrated with the medical community in general who don't seem to recognize PICS. I talked with the ICU doctor who treated me who didn't believe PICS was real. He told me I just needed to forget about about my ICU experience. My husband was with me and he spoke up and said he is a Vietnam vet and said he has PTSD. He told the doctor that PTSD is very real. Hubby said it has taken him 50 years to have a peaceful sleep. The doctor shut up then. Then I said I wanted to talk to the residents, or nurses about my ICU experience and he said my experience was of no value. He was an ass.