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

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?

I would also like to mention that with all the weight loss after the transplant, I did not feel normal. Everyone told me the weight loss was great, but I lost too much too fast. I still had the "sick" look about me.

I was hurting in the right side when I got up and down but thought it was just the routine of healing and so on. This pain was pain from the bile duct. I underwent CT scan but nothing was found by local radiologist. So I continued on until my next checkup at Mayo and that is when bile duct problem was found.

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?

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?

@spottedcat83 Hello and welcome to Mayo Connect. It sounds as if you have been through an incredible trauma and your frustration with your current situation is very understandable. You do not mention where you live, however, in Michigan we have Hope Network which is a Rehabilitation facility that specializes in neurocognitive rehab. This type of rehab would be very helpful to you. Perhaps you could use your computer and google the term, "neruocognitive rehab" in your locale and see what facilities might be available near you and then see if they can help you. If you are comfortable sharing more, let us know how you ended up in ICU. Was it the result of an accident or stroke? We look forward to getting to know you better. Teresa

@spottedcat83 and @elhirsh, I would like to add my welcome to Teresa's- I think this will be a great place for you to connect with others who have also experienced something similar to what you have been through. In my experience, part of the "healing journey" is to keep sharing and connecting.