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Post-Intensive Care Syndrome (PICS) - Let's talk
Intensive Care (ICU) | Last Active: Sep 16 7:52pm | Replies (609)Comment receiving replies
Hi everyone,
Happy to meet everyone, sorry we are here together. I was discharged on July 2nd, 2024 after 8 days in the ICU, 9 days total at the hospital. I experienced some kind of mystery respiratory incident - I got too sick for it to be just pneumonia but got better too fast for it to be ARDS.
I'm home now, trying to figure out what "recovered" means. I'm doing physical therapy, and regular therapy. I'd like to do a group for survivors but haven't found one beyond this page (which I deeply appreciate!). My respiratory rate is improving, my muscles are getting stronger. I do still have confusion, brain fog... my brain feels like its 60-70% of what it was. Sleep is improving. Thank God I'm on summer break for work and can focus on myself.
I'm still trying to navigate almost dying - how did I let myself get so sick? (In part I threw myself into work because my husband left me in November. He "couldn't do it" anymore, wasn't willing to work on the relationship.) Am I happy with the life I would have left behind? (I'm not) How do I create a life I'm proud of, thats bigger than just work?
I'm also trying to learn how to let people in, to let them care for me the way I care for them. I work in a helping field, and give so freely to others without expectation. I'm using the website signupgenius.com to let people offer their help. Its amazing how people have rallied to help me, I'm struggling to accept their love.
I feel really lucky in so many ways - to have had access to phenomenal medical care, to have made it out, to be recovering well, to have the support of others, to have found this group, to have a future. This is not how I expected the summer to go. I know they God doesn't give you more than you can handle, but I wish He was less confident in my abilities to persist.
If anyone has suggestions on supports for my mother as well, that would be really appreciated. She has had two adult children in the ICU this year, which is a lot.
Replies to "Hi everyone, Happy to meet everyone, sorry we are here together. I was discharged on July..."
Hey @megh02170, at the risk of overwhelming you, I have a number of places to link you to on this website.
I know you said your recovery ruled out ARDS, but I thought you might still appreciate the stories shared in this discussion:
- ARDS Support: my story and looking to help other survivors https://connect.mayoclinic.org/discussion/ards-support-my-story-and-looking-to-help-other-survivors/
PICS-F (post-intensive care-family) is a real thing. Family members are affected by ICU stays as well. @andreab explains in this blog and discussion:
- Breaking it Down: Post Intensive Care Syndrome and The Family https://connect.mayoclinic.org/blog/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-the-family/
- The ICU experience from a loved one's perspective https://connect.mayoclinic.org/discussion/the-icu-experience-from-a-loved-ones-perspective/
I agree with the helpful tips that @vlbondon offered. If talking it out isn't for you, you might find journaling helpful:
- ICU diaries - how do they help? https://connect.mayoclinic.org/blog/pics/newsfeed-post/around-one-third-icu-survivors-get-ptsd-but-diaries-offer-hope-for-recovery/
I know @rosemarya really appreciated her husband's help with filling in the gaps when she was ready to piece things back together. Perhaps, working on an ICU diary together with your mom could be beneficial to both of you?
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A lot of us empathize with what you've been through; you are not alone. Don't know your age but the older we are the longer recovery takes. Keep adding a bit to the physical part of your rehab if you can. Days when you just can't, don't worry, It took me six months to actually be normal, and I still am not where I'd like to be. I am 78 and young in every way before my sepsis hit last October, no symptoms, delirium finally moved my partner to get me up and go to ER, didn't leave for 10 days, IV Rx there and home another 6 days. Near death, yes. Good care, yes. Good support system, small but good. Patience is what you need, and caring for yourself first priority. You've overdone it in the near past, and I did too, so now it will take much longer to get things done. That is ok. We are not indispensable. Ask for help from those you have, even Nextdoor.com members pitch in for you if you need help. Church etc may be there for you, they do a lot when folks are ill and need work around the house, or just a visit. Talk about your experience when you can, with those you trust.