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I so appreciate your post about your post-ICU experience, @seanne. You make a very strong point for advocating for yourself, getting your full medical records. From what I can see you have developed an accurate picture of your experiences even though you were too ill to realize what was happening to you. I so admire the work you put into this endeavor.

I am so pleased to hear that you journaled about your experiences. There is something very healing about writing about your thoughts and feelings – even if they are cloudy. I am glad that you have supportive family and friends to share with. I am especially happy that you found Mayo Connect and that you have shared your story and some valuable information about recovery for our other members who have been in the ICU.

I look forward to continuing to hear about your recovery process. Will you continue to post?

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Replies to "I so appreciate your post about your post-ICU experience, @seanne. You make a very strong point..."

Dear Teresa, Thank you for your kind and encouraging words. Every bit of support helps!
I neglected to add one more positive about journaling. It can take emotional weight off the family. Here's how:
Various family members stayed with me around the clock in the ICU. They experienced my frightening ups and downs — the crazy lab values, the coma that was slow to end, the respiratory failure, etc.
Plus they had to face the frightening reality that I might not survive, and if I did I might be seriously brain damaged.
Of course I knew none this. And once home I was full of questions about what I'd been through. It didn't dawn on me that asking about my hospitalization — and asking the same questions repeatedly because I couldn't remember their answers — continuously re-exposed them to their own ICU trauma. It was an awful thing to do to my loved ones.
Once I figured this out, I asked each person if I could ask them one final time about what I they saw me go through and what they themselves went through. It was pretty wrenching, yet all but one agreed. I wrote everything down in my new journal.
Since then I've made a concerted effort to not bring up our shared ordeal and only discuss it if they want to. Instead I'll reread my journal entries. As I learned more and more about PICS those entries became puzzle pieces I could put together to gain more understanding.
I also use my journal to write down thoughts, feelings, frustrations and observations I don't want to burden my family with. They went through so much for me. I owe them the kindness of letting them put my illness in their past.
As for me, the experience remains with me, in no small part because my docs say I could have a repeat of the core issues that hospitalized me initially.
Bottom line: Journaling is definitely helping me cope, both emotionally and cognitively. Hopefully writing this here will encourage others to journal, and they'll see benefits, too.