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@spottedcat83

I'm having a desperate time of it right now. Well, actually all the time, not just right now. I was in the ICU in 2014, on a respirator for eight days, I think. I had vivid hallucinations while I was on it. When I was coming out from under the anesthesia, my brother wasn't there that day and I believed for over 24 hours of terrified semi-wakefulness that I was being held prisoner somewhere. I make jokes about it now, but it was no joke then.

When I started recovering, I couldn't walk. I'm right handed, and my right hand wouldn't function. I lost so much muscle, my thigh looked like it had a cute little waist.

I couldn't remember the date, or even the year, for several days while I was recovering.

What's causing the desperation now is the shape my brain is in. I've had significant memory loss. I had neuropsychological testing done twice, in 2015 and just this spring in 2017. Both tests showed mild cognitive impairment. I am working part-time, and the only reason I can do that job is because it's twelve hours a week and very flexible. The depression monster and its friend the anxiety monster are constant companions for me. My brain won't work for me anymore, but adding to the problem is that...

I
look
so
normal.

I know that I am disabled. I know that I ought to be on disability. But Iook so nicely normal, and I sound normal much of the time. I need help, and I know it. But getting help is almost impossible. I'm supposed to be seeing either a... what's it called? Occupational therapist. And a speech therapist too. But how am I supposed to do that when my insurance sent me a letter saying that all but one of the therapies was denied? I'm supposed to call them back and see if they were approved. Then I can maybe do something if they're not approved. But I can't remember to call them back most of the time. And even if I did, the mental fatigue is making me want to crawl back into bed, fall asleep, and just not wake up. No, I'm not suicidal; I mean literally, I don't want to wake up. I just want to sleep, where I don't have to deal with all this overwhelming stuff.

I need help with disability stuff, but since I look normal, or maybe because social workers don't have time for people who look normal on the outside, or something, nobody is offering to help me. I don't even know who to ask anymore.

Are there specialists somewhere to help people like this? My life has been pretty much ruined, and yet I'm supposed to just get myself together and get myself a full-time job so I won't be worrying about living on $600 per month or less.

I feel like I'm being pulled under. I have a very few friends, but they're not close enough to help. I share a house with my brother, but he has his own set of problems. (We come from a family with at least one depression monster, or one anxiety monster, or one PTSD monster, and often multiple monsters, which complicates anything that comes our way.)

Help?

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Replies to "I'm having a desperate time of it right now. Well, actually all the time, not just..."

You are not alone. There are specialists who are part of a post icu and recovery clinics across the country who may be able to help.

You are correct you have experienced a trauma and you are both trying to process that experience, heal your self and recover your cognitive brain function. But the medical insurance system is not good at checking underneath the hood of a seemingly normal and healed body. Check out the thrive website and learn more.

By posting and sharing your story and asking for help you are doing the important work
Keep it up

@spottedcat83, I am so happy you found this space that you can meet others who share such similar stories and feelings. I think one of the biggest emotional reliefs that many people find in forums like face to face or online support groups is that they are not alone in what they are experiencing. And you certainly are not! However, this doesn't do anything really to help the very real barriers that you are experiencing with your attempts to access and obtain real care for the problems you are facing. I wonder, have you reached out to your primary care provider about these issues? You might find it helpful to visit the following websites to learn more about Post Intensive Care Syndrome, and then bring this new knowledge with you to an appointment:
https://connect.mayoclinic.org/page/pics/
http://www.myicucare.org/Thrive/Pages/default.aspx

I also want to let you know about a face to face support group that we offer here in Rochester MN if you are local. We meet the third Monday of every month. Our next meeting is tomorrow from 2-3pm! Here is a link to more information about this group:
https://connect.mayoclinic.org/page/pics/tab/resource-81/

Thank you! I live in the Seattle area, so I can't make it to your group, but maybe I can find something closer to home.

🙂

Yes! There is a group from Harborview hospital who are members of our THRIVE collaborative through the Society of Critical Care Medicine. Here is the website for THRIVE for more information (and other resources as well!): http://www.myicucare.org/Thrive/Pages/Find-In-Person-Support-Groups.aspx

Let me know if you want more info!