Post-Intensive Care Syndrome (PICS) - Let's talk

Thank you, @vlbondon - I very much appreciate your empathy and kind words. Especially the point that we are not indispensable.

Fortunately I'm only 39. While I'm overweight, I live a very active lifestyle (walking the dog, dancing, pilates, etc). I think that and my tenacity have been a saving grace.

Thank you again < 3

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?

I had an article on ICU diaries published towards the end of last year, using extracts from my own diary and describing how it helped my psychological recovery, if anyone is interested in reading it: https://link.springer.com/article/10.1007/s00134-023-07233-2

Great article, @lamphey. How did writing a diary of your ICU experience help you? Why would you recommend writing one's experience to others?

Apologies if I have misunderstood your question but I didn't write the diary. I wrote an article based on the diary that was created and maintained by my partner at the time.

An ICU Diary or patient journal can be a valuable therapeutic aid in the patient's psychological recovery. Many former patients, no matter what the source of their admission, are left with no memory of their time in ICU or they have a fragmented and delusional recall of events, where they are unable to determine what is real and what is imagined. This missing time or having memories of a life you didn't live is disturbing and can put you on a pathway to PTSD diagnosis.

There are three different elements to my ICU Diary, the day-to-day journaling, photographs taken during my coma while both on and off ECMO and my written notes from when I was unable to communicate verbally due to the trach. Each one provides a different perspective of my ICU experience.

The bulk of the diary is the day-to-day journaling, which covers the first fifty days of my hospitalisation and has allowed me to create a timeline of events so I can anchor my experience in reality
The twelve photographs add a layer of reality that augments the written words and emphasises the severity of my illness.
I find my written notes the most fascinating to look back on because I am not relying on someone else's interpretation of events. These notes were written in real-time, by my hand and putting on paper my thoughts in that particular moment.

My ICU Diary is one of my most treasured possessions and nearly fifteen years later, it continues to serve as a grounding mechanism when PTSD and depression tighten their grip and I find myself struggling to move forward.

My wife kept some notes, and wrote out a rough timeline of events after I was released (two years ago I spent a month in the ICU with ARDS and pneumonia, intubated, then trach, etc). That helped, but I can also attest to the importance of a diary, whether kept by family or even a treatment list kept by the ICU staff. What I had only filled in a few gaps, but it helped. Talking through the experience with my wife helped as well. We have no ICU support group that I can find locally, so I've relied on an online group in the UK, and now finally came across this site.

For those earlier in recovery, it takes time. Be patient. Don't expect to return to normal in a couple of months, and to some lesser extent maybe not in a couple of years. It isn't just the physical, but emotional and mental scare that take time to heal, and changes that take time to adjust to.

It's been 16 months and I thought I was much improved, that is until I started reading about other people's experiences. I died and was resuscitated, I was also intubated. I had Covid. I do not remember anything that happened although I have been told that I was awake and alert when I was intubated. Writing notes. My son and niece were called and I was also trying to.commnicate with them. I remember nothing. I must have fallen asleep because on the 2 day I woke up and I remember being very confused not knowing why I had been intubated and moved to ICU.
I have had a couple of very anxious days now. I had hoped I had finally gotten over the trauma of ICU.

Such helpful advice about keeping a diary, @dtfsk. And you're so right that post-ICU is more than just physical. It takes time to heal.

How are you doing now? What challenges remain and what is getting better?

I am doing better now, thank you for asking. Main challenges are some relatively minor residual eyesight issues due to a damaged optical nerve from sedation; sleep is erratic; and stress is more difficult to manage at times.

But as time goes on, the more I find ways to adapt, and that in turn seems to lessen the impact of changes, and even leads to improvements. One example is short term memory problems that seem common with PICS, such as forgetting a word during conversation, or immediately forgetting something we just planned to do a few seconds earlier. Lately I've made more of an effort to retrain my memory skills by memorizing dates, directions, names, etc without relying on written notes. That is helping, I also picked up a new hobby that I really enjoy, and that has helped with focus and regaining a positive rather than fearful outlook.