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

Have you heard of Post-Intensive Care Syndrome? Sometimes it’s called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.

Grab a cup of tea, or beverage of your choice, and let’s chat. Why not start by introducing yourself?

@andreab

@kristap31 I am very glad you have found this group and thank you for sharing your story. You bring up such a powerful point. Families can suffer post-ICU difficulties – just as patients do. When this happens it is known as PICS-family (PICS-F). More about that can be found in this blog post I wrote a little while back: https://connect.mayoclinic.org/page/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-the-family/

You also bring to light something that isn't discussed as often as other topics – and that is dealing with and mourning the loss of those you become close with during the hospitalization. This may be especially true in the pediatric ICUs where lengths of stays can be very prolonged and families lean on each other heavily for support. I know that some ICUs have "reunions" where families come together once a year to reconnect – I wonder if something like that takes place at the hospital you were at? This can be very therapeutic for many people.

It is also so true that finding people who "get it" in regards to the trauma that you all experienced can be very difficult. Sites like this or even face to face support groups can be tremendously helpful. Talking through the experience, working it out with others who have been there, is incredibly important. I am not sure where you are geographically, but here is a link to hospitals around the nation and the world that host such groups in case you may be close to any: https://sccm.org/MyICUCare/THRIVE/Connect-With-Patients-and-Families

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Thank you for responding! I will read the blog post you wrote. We live in a mountain town which is four hours from the nearest hospital that offers the post ICU support. However, my son's PICU is hosting a retreat for the staff and are inviting PICU families to participate and share their stories. They invited us to come and share a video of our experience! That will be very helpful for us in processing, sharing, and also hopefully connecting with some other PICU families. (Maybe not the same families we became close with during his PICU stay but it will still be nice to connect with people who "get it."

The hard things I am dealing with are multi-layered. I talked about our son's 2 month hospital stay, but a year prior we lost a baby boy to stillbirth at 35 weeks from unknown cause. Then after a healthy delivery for our second son, one week later I experienced a massive postpartum hemorrhage and almost lost my life. I was on the verge of DIC and they had to perform an emergency hysterectomy to save my life. That was incredibly traumatic. We wanted more children, and to wake up from surgery without a womb has been devastating. So I was also in our rural hospital's version of an ICU and left without the ability to have another baby. There is no support for that ICU stay for me or the loss of my womb. I even went to a large Denver hospital seeking support for emergency hysterectomy and there is nothing offered. That has also been a lonely and difficult journey.

So we are simultaneously dealing with grief from the death of our first son, grief over the hysterectomy, and the trauma and ongoing medical issues with our toddler. Before all of this, we were a healthy and active family with no history of any medical conditions. It is all shocking and difficult! Living in a small town (the we are well supported by loving family and friends) has been challenging because there are few support groups or licensed trauma counselors, etc. Thank you for offering a space to discuss these things! My toddler is coming to Mayo Clinic next month to be evaluated there. We are grateful to now be a part of this neat community.

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@andreab

@kristap31 I am very glad you have found this group and thank you for sharing your story. You bring up such a powerful point. Families can suffer post-ICU difficulties – just as patients do. When this happens it is known as PICS-family (PICS-F). More about that can be found in this blog post I wrote a little while back: https://connect.mayoclinic.org/page/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-the-family/

You also bring to light something that isn't discussed as often as other topics – and that is dealing with and mourning the loss of those you become close with during the hospitalization. This may be especially true in the pediatric ICUs where lengths of stays can be very prolonged and families lean on each other heavily for support. I know that some ICUs have "reunions" where families come together once a year to reconnect – I wonder if something like that takes place at the hospital you were at? This can be very therapeutic for many people.

It is also so true that finding people who "get it" in regards to the trauma that you all experienced can be very difficult. Sites like this or even face to face support groups can be tremendously helpful. Talking through the experience, working it out with others who have been there, is incredibly important. I am not sure where you are geographically, but here is a link to hospitals around the nation and the world that host such groups in case you may be close to any: https://sccm.org/MyICUCare/THRIVE/Connect-With-Patients-and-Families

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I just read your blog post and thought those words were excellent! I was wondering if there is any written booklet or handbook for PICU families that could be given during long stays? EVERY point/piece of advice that you mentioned my husband and I learned just by going through it. My son's hospital did have excellent social workers and nurses who verbalized many of the points you wrote about, but it would be even more helpful to in addition have a hard copy to remind PICU families to care for themselves and recognize the stresses of being so involved in your loved one's care. It would also be helpful to know what to expect as far as the emotional and physical strain on family members. We were in the PICU five weeks, so it was a long time to be in that environment.

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I would contact the PICU you were in. I have been retired for a while, so I don't know if the PICU I work at had such a program. I know the adult ICU at the same hospital has no aftercare program. It's a real shame that no all hospitals recognize the stress involved an ICU stay no matter the age of the patient. I have tried and tried to the hospital officials where I once worked about an aftercare only to be shot down and told I didn't know what I was talking about. It's so frustrating. I go to personal therapy – one on one. That helps. But I know the same mistakes with patients must be still happening with patients every day.

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@milindohope83

Oh yes, especially if you care for them for weeks or more and it is determined that the condition that they are suffering with is never going to get better and there is little to be done except offer comfort to the patient and family. It helps them all to see familiar faces caring for them. It helps to know that you are not just a patient in a room who may never go home again from the hospital. It can be a tough job alot of the time, not just the medical care, but the emotional support. But it is the most important thing of all to offer in that that loving one on one care for all who are suffering in such a way.

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My son was in a PICU for five weeks last summer. Though most of my attention was on him, I often thought of how hard it would be to be a PICU nurse. I really admired them and they were my support and strength through some of the most terrifying moments. Thank you for all you do! The PICU we were in invited us to a PICU retreat to share and encourage the staff. I think it is great that more awareness is developing as to the emotional impact of ICU stays on families, patients and staff.

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@janegigi

I would contact the PICU you were in. I have been retired for a while, so I don't know if the PICU I work at had such a program. I know the adult ICU at the same hospital has no aftercare program. It's a real shame that no all hospitals recognize the stress involved an ICU stay no matter the age of the patient. I have tried and tried to the hospital officials where I once worked about an aftercare only to be shot down and told I didn't know what I was talking about. It's so frustrating. I go to personal therapy – one on one. That helps. But I know the same mistakes with patients must be still happening with patients every day.

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The PICU invited our family to a PICU retreat where we can share our perspective and be with some of the providers who were caring for our baby. I think that will be a good step in helping to process some things. Thank you for your efforts in trying to establish an aftercare program at the hospital you used to work at. The support DURING our stay was incredible, and we continued to have some contact with individuals. However, I think a formal support and at least opportunity to talk to a social worker about grief, trauma, death of other kids…would be invaluable. Hopefully awareness is being raised and change can happen. I had no idea that others dealt with these issues until I found this Mayo Clinic group! I thought I was crazy and the only one struggling! The weird thing is no one even asks how that PICU stay and my baby's near death affected me. I guess people just don't think about it.

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@janegigi

I worked for PICU physicians in an administrative capacity for years, so I know a little bit of what you're going thru. I often think my work helped me later me when I became ill. Yes, people do not realize what a toll prolonged illness takes on a family. People tend to think 'put it behind you' , but there is no way that can happen. My advice, to what has been helpful for me, is find a good therapist. I try to go every two weeks. I feel I probably will go the rest of my life. My family even got tired of hearing me talk about my ordeal. Physicians often don't understand. Medication didn't help me. It may help others. I had a couple of therapists who I didn't like at all, move on if you get a bad feeling or you don't click. I find it helpful to do charity work. But I also had to walk away from former friends who just didn't understand my ordeal. Our lives are before the ordeal and after ordeal. You have the added sorrow of mourning the passing of friends' childrens. Please try therapy. Keep a journal. I jot down things, just for my eyes. So when I go to therapy, I have points to talk about.
How is your child now?

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Thank you so much for your kind response. I'm sorry it has taken so long to respond. I would love to find a good therapist, but live in a small rural town. We travel often to Denver for medical appointments, but at this point my son's needs are priority. If I just knew of a great therapist I would travel to go! I'm just afraid it is going to take awhile to find one. Journaling does help. I should do that more often. I think just getting my thoughts out on paper is good to see what I'm dealing with.

It's so true that life is before and after. I felt like that after my first son was stillborn. After Owen's PICU stay, it is even more so. A lot of my friends have not been through these situations so it has felt quite lonely. They just don't get it, don't ask and so I don't get the chance to talk through things. It's almost not worth the effort to keep up some friendships. Hope that doesn't sound selfish.

We participated in the Courage Classic fundraiser for Children's Hospital last weekend. That was a healing event, giving back to the hospital and being able to look back over the past year and see how far we have come. Our son (19 months) rode with us, and it was a huge mental victory to be able to do it with him. It made me feel not so alone as many other families and kids with medical challenges participated.

Owen is doing remarkably well now, considering everything his little body has been through. He went into multi-organ failure last summer and the cause is still unknown. The fear of that is with me all the time. During that PICU stay he had nine surgeries and was seen by many specialists. After discharge two months later, he came home with a colostomy, feeding tube, tons of follow up viists, and a paralyzed foot and severe peroneal nerve damage supposedly from a bloodclot and organ failure. Over the past year, we all worked incredibly hard and he no longer has a colostomy, feeding tube or any meds. The main issue now is his leg injury which is why he is going to Mayo Clinic next month. He is happy, bright, determined and a complete joy. It has been a journey.

I did want to ask you, do you ever feel fear from your ICU stay? I fight fear all the time after the traumatic things our family has endured. I have to try really hard not to be paranoid about everything my kids do. The unknown cause of Owen's illness contributes hugely to that fear. I am unsure how to deal with it!

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@kristap31

Thank you so much for your kind response. I'm sorry it has taken so long to respond. I would love to find a good therapist, but live in a small rural town. We travel often to Denver for medical appointments, but at this point my son's needs are priority. If I just knew of a great therapist I would travel to go! I'm just afraid it is going to take awhile to find one. Journaling does help. I should do that more often. I think just getting my thoughts out on paper is good to see what I'm dealing with.

It's so true that life is before and after. I felt like that after my first son was stillborn. After Owen's PICU stay, it is even more so. A lot of my friends have not been through these situations so it has felt quite lonely. They just don't get it, don't ask and so I don't get the chance to talk through things. It's almost not worth the effort to keep up some friendships. Hope that doesn't sound selfish.

We participated in the Courage Classic fundraiser for Children's Hospital last weekend. That was a healing event, giving back to the hospital and being able to look back over the past year and see how far we have come. Our son (19 months) rode with us, and it was a huge mental victory to be able to do it with him. It made me feel not so alone as many other families and kids with medical challenges participated.

Owen is doing remarkably well now, considering everything his little body has been through. He went into multi-organ failure last summer and the cause is still unknown. The fear of that is with me all the time. During that PICU stay he had nine surgeries and was seen by many specialists. After discharge two months later, he came home with a colostomy, feeding tube, tons of follow up viists, and a paralyzed foot and severe peroneal nerve damage supposedly from a bloodclot and organ failure. Over the past year, we all worked incredibly hard and he no longer has a colostomy, feeding tube or any meds. The main issue now is his leg injury which is why he is going to Mayo Clinic next month. He is happy, bright, determined and a complete joy. It has been a journey.

I did want to ask you, do you ever feel fear from your ICU stay? I fight fear all the time after the traumatic things our family has endured. I have to try really hard not to be paranoid about everything my kids do. The unknown cause of Owen's illness contributes hugely to that fear. I am unsure how to deal with it!

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You don't sound selfish at all. I have 3 children and now 6 grandchildren, so I know they come first. I was 62 when I got ill. But your life does change completely. I had to step away from previous friendships bc they thought I could step back into my previous life, not understanding barely walk. I had been a long time Girl Scout volunteer. Some of the people even ( I'll never know who) even tried to get me removed from my volunteer position. That was painful. I can only guess bc I wasn't at their beck and call like I had been before. A Board member stepped forward and vouched for me and the CEO actually apoligized to me. I changed the area where I volunteer. I'll be helping my daughter with my granddaughter's troop, and I still help with fund raising. But it does feel good to give back in the fund raising department. I just have to pace myself.

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@kristap31

The PICU invited our family to a PICU retreat where we can share our perspective and be with some of the providers who were caring for our baby. I think that will be a good step in helping to process some things. Thank you for your efforts in trying to establish an aftercare program at the hospital you used to work at. The support DURING our stay was incredible, and we continued to have some contact with individuals. However, I think a formal support and at least opportunity to talk to a social worker about grief, trauma, death of other kids…would be invaluable. Hopefully awareness is being raised and change can happen. I had no idea that others dealt with these issues until I found this Mayo Clinic group! I thought I was crazy and the only one struggling! The weird thing is no one even asks how that PICU stay and my baby's near death affected me. I guess people just don't think about it.

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@kristap31 thank you so much for sharing your family's story with all of us. I can connect with you from a parent/patient perspective when you say "no one even asks how that PICU stay and my baby's near death affected me". When my son nearly arrested in the ED and ended up in the ICU for 4 days a year and a half ago it all seemed so surreal. But when we left the hospital, we did not have any follow up appointment scheduled for over a month! I was shocked. Coincidentally I had an appointment for myself with our Family Med MD 5 days later. We spent my whole appointment talking about my son's event and we cried and cried and cried together. It was a huge debrief and connection that I needed SO badly at that moment. I don't know what I would've done if I had had nobody from the medical team to talk to for a month! But you are so right – people just don't think about it and don't understand that need to connect and debrief and even to just cry.

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My PCP has been big source of strength for me too. But what a shame other physicians and other staff are not.

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@kristap31

Thank you so much for your kind response. I'm sorry it has taken so long to respond. I would love to find a good therapist, but live in a small rural town. We travel often to Denver for medical appointments, but at this point my son's needs are priority. If I just knew of a great therapist I would travel to go! I'm just afraid it is going to take awhile to find one. Journaling does help. I should do that more often. I think just getting my thoughts out on paper is good to see what I'm dealing with.

It's so true that life is before and after. I felt like that after my first son was stillborn. After Owen's PICU stay, it is even more so. A lot of my friends have not been through these situations so it has felt quite lonely. They just don't get it, don't ask and so I don't get the chance to talk through things. It's almost not worth the effort to keep up some friendships. Hope that doesn't sound selfish.

We participated in the Courage Classic fundraiser for Children's Hospital last weekend. That was a healing event, giving back to the hospital and being able to look back over the past year and see how far we have come. Our son (19 months) rode with us, and it was a huge mental victory to be able to do it with him. It made me feel not so alone as many other families and kids with medical challenges participated.

Owen is doing remarkably well now, considering everything his little body has been through. He went into multi-organ failure last summer and the cause is still unknown. The fear of that is with me all the time. During that PICU stay he had nine surgeries and was seen by many specialists. After discharge two months later, he came home with a colostomy, feeding tube, tons of follow up viists, and a paralyzed foot and severe peroneal nerve damage supposedly from a bloodclot and organ failure. Over the past year, we all worked incredibly hard and he no longer has a colostomy, feeding tube or any meds. The main issue now is his leg injury which is why he is going to Mayo Clinic next month. He is happy, bright, determined and a complete joy. It has been a journey.

I did want to ask you, do you ever feel fear from your ICU stay? I fight fear all the time after the traumatic things our family has endured. I have to try really hard not to be paranoid about everything my kids do. The unknown cause of Owen's illness contributes hugely to that fear. I am unsure how to deal with it!

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Hi @kristap31 . Your little guy, Owen, seems like he has been through a lot in his short life so far. I also can sense the grief and sadness in your posts. Undoubtedly, you have endured quite a bit of loss with your son, your future children that you never got to bear, and the fear of another critical illness for Owen. My goodness… you're carrying a lot of weight on your shoulders everyday.

I'd love to hear any insight as to what has been helpful for you. Have you found any success in coping through these feelings and emotions? Does talking through it help? The journaling help? Have you found other practices that have been helpful, perhaps church groups/support or other grief groups? How about reaching out to your own primary care provider?

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*content warning for mentions of a suicide attempt, please read with care*

I've posted in this group several times, but until now, I haven't shared my story. Today, I'd like to do so.

I landed in the ICU in January 2019 following a suicide attempt. I was initially partially paralyzed, unable to move my arms or legs, was expected to stop breathing (I gave consent to be put on a ventilator, and was in acute kidney failure, requiring emergency dialysis.

The cruel irony of my attempt and it's aftermath is that it was my unbearable PTSD symptoms that led me to try to end my life. I was so traumatized already, before the ICU – and my terrifying time there only further traumatized me. For me, the worst of my ICU trauma isn't about invasive procedures or interventions, but rather about the loss of control over my body and the things that were done to it to save my life.

I left the ICU in kidney failure, a dialysis catheter in my neck, and most devastatingly, unable to walk due to neuromuscular damage. I spent five months as a full time wheelchair user, and currently have progressed to using a walker.

I struggle with immense guilt over my responsibility for making my life so much harder and inviting in this additional trauma. I'm addition to this guilt, I struggle with frequent flashbacks and nightmares of my time in the ICU. Eight months out, these symptoms have improved, and I've been able to do EMDR (a type of trauma reprocessing therapy) to help reduce the flashbacks – but I still deal with them on a regular basis. Because of my neuromuscular damage, I find that it is a near-constant reminder of my ICU experience. Often it feels like I can't escape it.

My mental health has been greatly affected by this experience and my difficult recovery. I have bounced back from a lot of things in my life – yet I am having an extremely hard time bouncing back from this. I'm currently in intensive mental health treatment to try and cope with what has undoubtedly been the most challenging and discouraging year of my life.

I am so grateful for this group and for the support I've already received, and to know that I'm not alone in struggling to make sense of these experiences. Thank you for letting me share, and thank you for listening.

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@alex12119

*content warning for mentions of a suicide attempt, please read with care*

I've posted in this group several times, but until now, I haven't shared my story. Today, I'd like to do so.

I landed in the ICU in January 2019 following a suicide attempt. I was initially partially paralyzed, unable to move my arms or legs, was expected to stop breathing (I gave consent to be put on a ventilator, and was in acute kidney failure, requiring emergency dialysis.

The cruel irony of my attempt and it's aftermath is that it was my unbearable PTSD symptoms that led me to try to end my life. I was so traumatized already, before the ICU – and my terrifying time there only further traumatized me. For me, the worst of my ICU trauma isn't about invasive procedures or interventions, but rather about the loss of control over my body and the things that were done to it to save my life.

I left the ICU in kidney failure, a dialysis catheter in my neck, and most devastatingly, unable to walk due to neuromuscular damage. I spent five months as a full time wheelchair user, and currently have progressed to using a walker.

I struggle with immense guilt over my responsibility for making my life so much harder and inviting in this additional trauma. I'm addition to this guilt, I struggle with frequent flashbacks and nightmares of my time in the ICU. Eight months out, these symptoms have improved, and I've been able to do EMDR (a type of trauma reprocessing therapy) to help reduce the flashbacks – but I still deal with them on a regular basis. Because of my neuromuscular damage, I find that it is a near-constant reminder of my ICU experience. Often it feels like I can't escape it.

My mental health has been greatly affected by this experience and my difficult recovery. I have bounced back from a lot of things in my life – yet I am having an extremely hard time bouncing back from this. I'm currently in intensive mental health treatment to try and cope with what has undoubtedly been the most challenging and discouraging year of my life.

I am so grateful for this group and for the support I've already received, and to know that I'm not alone in struggling to make sense of these experiences. Thank you for letting me share, and thank you for listening.

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@alex12119 I am grateful to you for having the courage to share your story and for trusting us with it. I am also grateful for this community that has been built to help each other. There is a power in being able to witness and normalize things in this life that are beyond our imagining, and being able to do that together is even more powerful. I am glad you are here.

Liked by alex12119

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@alex12119

*content warning for mentions of a suicide attempt, please read with care*

I've posted in this group several times, but until now, I haven't shared my story. Today, I'd like to do so.

I landed in the ICU in January 2019 following a suicide attempt. I was initially partially paralyzed, unable to move my arms or legs, was expected to stop breathing (I gave consent to be put on a ventilator, and was in acute kidney failure, requiring emergency dialysis.

The cruel irony of my attempt and it's aftermath is that it was my unbearable PTSD symptoms that led me to try to end my life. I was so traumatized already, before the ICU – and my terrifying time there only further traumatized me. For me, the worst of my ICU trauma isn't about invasive procedures or interventions, but rather about the loss of control over my body and the things that were done to it to save my life.

I left the ICU in kidney failure, a dialysis catheter in my neck, and most devastatingly, unable to walk due to neuromuscular damage. I spent five months as a full time wheelchair user, and currently have progressed to using a walker.

I struggle with immense guilt over my responsibility for making my life so much harder and inviting in this additional trauma. I'm addition to this guilt, I struggle with frequent flashbacks and nightmares of my time in the ICU. Eight months out, these symptoms have improved, and I've been able to do EMDR (a type of trauma reprocessing therapy) to help reduce the flashbacks – but I still deal with them on a regular basis. Because of my neuromuscular damage, I find that it is a near-constant reminder of my ICU experience. Often it feels like I can't escape it.

My mental health has been greatly affected by this experience and my difficult recovery. I have bounced back from a lot of things in my life – yet I am having an extremely hard time bouncing back from this. I'm currently in intensive mental health treatment to try and cope with what has undoubtedly been the most challenging and discouraging year of my life.

I am so grateful for this group and for the support I've already received, and to know that I'm not alone in struggling to make sense of these experiences. Thank you for letting me share, and thank you for listening.

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I read your post last night after returning from a trip to Children's Hospital. Your story has been on my mind and I appreciate you sharing it, as hard as it is to hear. It is hard to know that people suffer so much and face constant, unavoidable reminders of things that can't change. At the same time, it gives me strength to know I am not the only one who faces such pain. I have shared my story briefly before, so won't repeat it. But some of the things you mentioned shed light on some of my struggles as well. I was not actually in the ICU because our rural town doesn't have one. I was in the "closest section to the ER charge station" which counts as ICU. I went from being healthy to nearly losing my life in a matter of seconds when I experienced a postpartum hemorrhage. To save my life, they put me to sleep, tried to stop the bleeding, but could not. I woke up and was horrified to find my womb and other female organs had been removed. As in, I would never again have the possibility of having a baby. The shock was incredible. I still can't believe that happened. Upon going home a week later, the staff offered no mental health support other than a website which told me I was no longer a "real" woman because of my loss. They were so glad they "saved my life" and I was devastated that I would never be the same. It has affected my sense of identity and purpose, and now I know that other women who have experienced such loss suffer with suicidal thoughts and depression as well. The scar I carry is huge, and a constant reminder of how I was "gutted." That's how it felt. Something I have struggled with following the shock and loss is how people respond. They don't allow me to grieve the loss of my future as I had hoped for it. They don't allow me to grieve the loss of every time seeing a pregnant lady knowing that has been taken from me. They don't allow the sorrow and disappointment to exist. It makes me feel even more alone in my experience. I wish we as people were "allowed" to grieve loss and voice our disappointment with how things turn out.

This is only part of my story, I have also lost a baby to stillbirth from no known cause and my six month old son spent five weeks in the PICU last summer. He was on dialysis, had a colostomy, multiple surgeries, and is currently dealing with severe peroneal nerve damage and left ankle contracture. He will have another surgery next month and his scars and injuries are also a constant reminder to me of everything he went through and his trauma. I struggle too with guilt from seeing his medical challenges and feeling I should have/could have prevented them somehow.

I hope that you can find strength to be kind to yourself in everything you are facing. You said you struggle with a lot of guilt from attempting suicide. I have struggled with suicidal thoughts too and have wondered why I do. For me it is an expression of how deeply my grief and frustration and loss have changed me. It is a crazy feeling to be out of control, and yet we all are. No one is really in control, and that is a hard reality to face. I hope you can find grace, kindness and much patience with yourself. I will be thinking about you and wishing you strength for what you need. And, keep writing! Your words can give strength to other people struggling with PTSD too. You are not alone

Liked by alex12119

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Smoky
First of all I must tell you that most of what I know about was told to me from my husband, sons and friends. I was in such back pain I took a pain med that I had never taken before. It was Dilodid (sp). I was allergic to it and had a very bad reaction. To make a long story short, I thought my little dog was being attacked in our back yard. I flew out of the sliding door and forgetting the steps leading down to the patio I landed on the cement. I broke 3 ribs and pelvis. My elbow looked like hamburger. I only remember the fire dept. getting me out to the ambulance. From there I know nothing.
I was in ICU for 6 weeks, then 2 weeks on a regular nursing floor. That was 13 months ago. I was on a ventilator on and off for for several weeks. When I was off it I had a tracheotomy tube. I still have it and will for the rest of my life. Luckily I am in the 20% that made it out of the hospital. Most don't. They stopped counting the times I was code blue, I think that is the right term for not breathing. It was at least 12 different times I was told. I am always sore in my back and neck, all of my muscles feel useless and sore, I still have that and headaches, dizziness, I wobble when I walk, hopelessness, my short term memory is gone, I can not form sentences and have a really hard time thinking of the correct words to say in a conversation. At first I used a wheel chair, then a walker and now I use a cane. I am extremely exhausted all the time, I cannot walk to the bathroom from the kitchen without gasping for air. If I try to do "something, anything" I am down for the count for a few days. I didn't know anything about this syndrome until yesterday. I happen to have gone in to see the doctor that took care of me in the ICU. He just happened to read something about it. I'm not sure any of this will help but it sure made me feel better for having found this site to know I'm not alone.
I ended up in the ICU from a horrible reaction to a pain med the doctor prescribed for me. I have been suffering from severe back pain for years. I am now allergic to ALL pain meds. It makes it rather difficult to get through surgeries. Oh well, carry on is my motto.
That's all I can think of at the present. I ended up with a trachea that after speaking with the doctors will remain for life. I am hoping to speak with "someone" at the hospital to set up or produce a pamphlet to give to those who are subjected to this syndrome. I think it would be a more proactive way to deal with this than to let the patient or family have to endure the side effects of the ICU and having to be intabated.
I haven't addressed this to anyone exclusively. From reading all the stories that we've had I think we all have had a pretty hard time. I know none of us deserved it, wanted it, didn't know what to do about it, etc. It just keeps on giving once you've got it. I will have been out of the hospital for a year and have not returned to myself at all. I am on depression meds. of all kinds and it doesn't feel like it is working. I wish you all better days.

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