Post Sepsis and ICU Syndrome: There are days I feel so down

Posted by EW @ew62, Oct 10, 2022

I have a question for those survivors of Septic Shock and the ICU. I spent two weeks in the ICU this past spring due to surgery complications. I went into Septic Shock from that, and lots of ups and downs during the ICU. I spent another two weeks rehabilitating and allowing my brain to return online.

There are days when I am soooooo down almost think it would have been easier to have died.

Is there anyone else who thinks like that? I am grateful to be alive, but so tired and feel like a veil is over me.

Please let me know if this is common.

Thanks for reading….

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

Hi Wendy, my name is Karen and I am the queen of severe sepsis and septic shock… And even ICU stays! I have been severely septic and or found in septic shock 14 times in 18 months…( 2021 & 2022 )! I’m curious how you’re feeling now? I don’t know why I am still alive; but by the grace of God, I’m considered the “miracle patient” in Nebraska.! That is not a very admirable crown to wear!! And with each septic episode, I had bilateral pneumonia, acute respiratory failure, a massive heart attack due to the sepsis on one occasion, numerous pulmonary embolism‘s in my chest from the sepsis on 2 others and had SAD; or sepsis associated delirium on my last two occasions. Prior to all that, I lived in Arizona, mother of two, married to my high school sweetheart for more than 30 years and made my living as a registered nurse. My last hospitalization was June 2022. In the past year, I am unable to work as an RN, or any job for that matter. I am separated from my husband, had to sell my home and I live on Social Security disability in Nebraska now! I also had Covid December 2022, also septic with bilateral pneumonia while visiting grandkids in Arizona. Prior to that I was a very vibrant, proud , very social and hard-working woman. Always with a very positive attitude! Since then I have been diagnosed with CHF, CAD, COPD,… Etc.! I honestly feel due to my medical background, and knowing the right people and places to go to for treatment & diagnosis; that the last diagnosis of CHF, CAD & COPD have been debunked! Because each time I went in with very low blood pressure and very low O2 sats… It was the hospital that put me into congestive heart failure, miss diagnosed me with COPD, as well as CAD! That being said, I still have multiple after effects due to my chronic sepsis. I suffer from internal vibrations fairly constant, my cerebellum was damaged in two of the septic shock episodes, so my memory has suffered, I get exhausted, very easily, definitely don’t have the lung power to walk or do activities even a tiny amount of what I was doing prior , scattered thoughts and of course emotional and social dislodge. I would like to tell you a few of the things that I have done that have seemed to help in many ways. For the vibrations, I get into my bed and I turn on my mattress vibrator as hard as it will go; it makes it so I can’t feel my internal vibrations at all. For my scattered thoughts, I sit down every single morning with a tablet, and I write down in order of importance, the tasks I want to accomplish for the day. It may be that I am going to focus on getting my laundry done, stretching on the floor for 10 minutes and walking 100 steps. I also write down what I am going to eat for the day as well as drinking close to a gallon of water every day. For the afternoon/evening, the most I write down is take a bath and take an evening walk for 10 minutes! I have had to convince myself that doing something is better than nothing at all, no matter how fatigued I am , I make sure everything on that list is checked off before I go to bed. I now have added a Bible study online. I do lessons in the mornings when I wake up before I get out of bed for about 20 minutes! I’m telling you that has probably helped me the most ! I started doing “Noom” to lose weight from that 18 months which increased my weight by 50 pounds. I have never been overweight in my life!! So being on Noom for the last year I have lost 35 pounds, it’s been extremely slow… But progress nonetheless! I also make one day of the week an outing day, where I make it a priority to go visit a friend or go walking at the lake with my dog, or just go to the park, relax and take a couple walks during my visit. I also then take one weekend day that I give to myself to do whatever makes me feel best; which has been going to church on Saturday night and then to our town’s bar and grill for dinner with a friend. These have all helped me emotionally feel much better! I still cannot do crowds of any kind , nor drive on streets that have any kind of busy traffic, and I definitely still have some days where I am just DOWN! But over the last year, I’ve learned that I feel even worse if I just stay in bed on my down days, both physically and mentally . It makes my back and my joints hurt more and makes me more likely the next day to stay in bed again and just mope around. So I have been faithful about getting up even on my bad days and at least getting my clothes on, brushing my hair and teeth , washing my face and putting at least some face cream on if not some mascara and Chapstick! On my tablet, I may only write for ex., wash the dishes and take my dog for a walk. So my message to you is, please don’t give up!! You were saved for a reason; a reason you may not see yet , but I believe you will in time. Even if your reason is to help others get through what you’ve been through, that is an amazing reason, and a craft that can’t be taught! But still very valuable!!! Reach out to people who care about you and at least try to understand what you’re going through . I have people, including family members who have no idea what sepsis is or what it’s like to be in the ICU 14 times in 18 months! No clue whatsoever and they make no effort to try to understand. For those people, including some friends and family, I just keep at arms length I.e., I make my conversations very short; give yourself permission to do that. We were not given the choice of our siblings, but we were given the choice of our friends. As an adult, I say, choose the family members and friends who stay by your side, root for you, & show how much they love you! And lastly, the biggest thing I have learned is to just embrace the things you can’t change, but make sure that you are thanking God every day for the little accomplishments. If you’re not exercising, try five minutes a day of anything. Sometimes I just dance for five minutes to my music and on bad days I sway to my music! 🙂 But overall, don’t forget that God saved you for a reason, and, although we may not see that purpose right now in front of our faces, I do know that your purpose will come to you one way or another. When it does, I hope you embrace it ! I have to admit, I also lost all my thick, long hair with all the Sepsis episodes…. Completely bald… But since I’ve implemented these things I have shared, my hair has started growing back as thick as it was, slowly but surely! I will keep you in my prayers , feel free to reach out whenever you want. I’d be happy to be a Sepsis warrior sister to you or anyone else! I too plan to reach out to the Sepsis alliance and see what that’s all about! Peace and love, Karen 🫶🏼

REPLY

Hi Wendi!! I’m sorry I forgot to directly answer your question. Yes, it is absolutely normal to feel like you would’ve been better off dead. I felt the same way, and after about the fourth time being severely septic, and in the ICU, I even begged God to take me!! Recovery from being severely septic, having bilateral pneumonia, even being in the ICU; are all very understandable reasons to feel down, depressed, and desperate! I totally went through that for about nine months after my last hospitalization in June 2022. You are normal honey, and you will get through this! I hope and pray you got my comment prior to this outlining the things I did to help myself. Post Sepsis and post ICU are hard for other people to understand. In my case, especially my children and husband; I think they were very supportive through my rehabilitation each time I got out of the hospital. But once I kept going back in with the same thing and coming out having to do the same rehab… I think they just got used to it and even felt like I should do something to help myself to stop from being sick all the time. They were used to me racing around all the time. I was extremely OCD about my children, my home and my job; so losing all of it made me feel as you described! I hope by now that you are feeling 100% better! I lost sight of this website for a year. I simply didn’t remember any such website due to the damage to my cerebellum. When it came Across my email today, I tapped on it, and yours was the first I read. I somehow don’t think that was an accident; as it reminded me that there are still people out there who may need my support! I hope this comment finds you much better, and With a whole new adjusted life that you’re happy to live! Peace and love!! 🫶🏼🌹🫶🏼🌹

REPLY
@karendn

Hi Wendi!! I’m sorry I forgot to directly answer your question. Yes, it is absolutely normal to feel like you would’ve been better off dead. I felt the same way, and after about the fourth time being severely septic, and in the ICU, I even begged God to take me!! Recovery from being severely septic, having bilateral pneumonia, even being in the ICU; are all very understandable reasons to feel down, depressed, and desperate! I totally went through that for about nine months after my last hospitalization in June 2022. You are normal honey, and you will get through this! I hope and pray you got my comment prior to this outlining the things I did to help myself. Post Sepsis and post ICU are hard for other people to understand. In my case, especially my children and husband; I think they were very supportive through my rehabilitation each time I got out of the hospital. But once I kept going back in with the same thing and coming out having to do the same rehab… I think they just got used to it and even felt like I should do something to help myself to stop from being sick all the time. They were used to me racing around all the time. I was extremely OCD about my children, my home and my job; so losing all of it made me feel as you described! I hope by now that you are feeling 100% better! I lost sight of this website for a year. I simply didn’t remember any such website due to the damage to my cerebellum. When it came Across my email today, I tapped on it, and yours was the first I read. I somehow don’t think that was an accident; as it reminded me that there are still people out there who may need my support! I hope this comment finds you much better, and With a whole new adjusted life that you’re happy to live! Peace and love!! 🫶🏼🌹🫶🏼🌹

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@karendn, welcome back. You really are a miracle patient. There's a lot to unpack in your story. I can't imagine having lived and living it. Your experience will enrich the discussions here on Mayo Clinic Connect and I'm grateful for your participation.

I'm tagging @wendi to make sure that she sees your response to her.

Karen, what motivates or helps you to get out of bed, even on those down days?

REPLY

I am 13 years a sepsis survivor and sometimes have bouts of depression. For me the first year was horrible. Due to sepsis I have brain damage. It has targeted my vision, I couldn't read at all. I was forced to leave my job at 61, and received disability from the college which continued until retirement age, After 4 months the insurance company demanded I apply for Social Security Disability and was granted on first application that my daughter and I prepared online. Have you asked your doctor for meds? Might be a good idea. I don't know how you have been affected, but getting back to functioning is slow. I never went back to my complete self, but have adjusted to my current state. Other health problems are dealt with on a daily basis. I would like to hear more from you. Good luck, keep showing up!

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@yvonne55

Yes I think like that too. Very depressed. Pneumonia, sepsis, ARDS. Am I just slowly dying? This definitely isnt my life.

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From a knee replacement surgery i went into sepsis/septic shock and ARDS. They thought I was going to die and somedays I wish I had died. My primary dr says I'll recover in 3 weeks which I really doubt it.

REPLY
@karendn

Hi Wendy, my name is Karen and I am the queen of severe sepsis and septic shock… And even ICU stays! I have been severely septic and or found in septic shock 14 times in 18 months…( 2021 & 2022 )! I’m curious how you’re feeling now? I don’t know why I am still alive; but by the grace of God, I’m considered the “miracle patient” in Nebraska.! That is not a very admirable crown to wear!! And with each septic episode, I had bilateral pneumonia, acute respiratory failure, a massive heart attack due to the sepsis on one occasion, numerous pulmonary embolism‘s in my chest from the sepsis on 2 others and had SAD; or sepsis associated delirium on my last two occasions. Prior to all that, I lived in Arizona, mother of two, married to my high school sweetheart for more than 30 years and made my living as a registered nurse. My last hospitalization was June 2022. In the past year, I am unable to work as an RN, or any job for that matter. I am separated from my husband, had to sell my home and I live on Social Security disability in Nebraska now! I also had Covid December 2022, also septic with bilateral pneumonia while visiting grandkids in Arizona. Prior to that I was a very vibrant, proud , very social and hard-working woman. Always with a very positive attitude! Since then I have been diagnosed with CHF, CAD, COPD,… Etc.! I honestly feel due to my medical background, and knowing the right people and places to go to for treatment & diagnosis; that the last diagnosis of CHF, CAD & COPD have been debunked! Because each time I went in with very low blood pressure and very low O2 sats… It was the hospital that put me into congestive heart failure, miss diagnosed me with COPD, as well as CAD! That being said, I still have multiple after effects due to my chronic sepsis. I suffer from internal vibrations fairly constant, my cerebellum was damaged in two of the septic shock episodes, so my memory has suffered, I get exhausted, very easily, definitely don’t have the lung power to walk or do activities even a tiny amount of what I was doing prior , scattered thoughts and of course emotional and social dislodge. I would like to tell you a few of the things that I have done that have seemed to help in many ways. For the vibrations, I get into my bed and I turn on my mattress vibrator as hard as it will go; it makes it so I can’t feel my internal vibrations at all. For my scattered thoughts, I sit down every single morning with a tablet, and I write down in order of importance, the tasks I want to accomplish for the day. It may be that I am going to focus on getting my laundry done, stretching on the floor for 10 minutes and walking 100 steps. I also write down what I am going to eat for the day as well as drinking close to a gallon of water every day. For the afternoon/evening, the most I write down is take a bath and take an evening walk for 10 minutes! I have had to convince myself that doing something is better than nothing at all, no matter how fatigued I am , I make sure everything on that list is checked off before I go to bed. I now have added a Bible study online. I do lessons in the mornings when I wake up before I get out of bed for about 20 minutes! I’m telling you that has probably helped me the most ! I started doing “Noom” to lose weight from that 18 months which increased my weight by 50 pounds. I have never been overweight in my life!! So being on Noom for the last year I have lost 35 pounds, it’s been extremely slow… But progress nonetheless! I also make one day of the week an outing day, where I make it a priority to go visit a friend or go walking at the lake with my dog, or just go to the park, relax and take a couple walks during my visit. I also then take one weekend day that I give to myself to do whatever makes me feel best; which has been going to church on Saturday night and then to our town’s bar and grill for dinner with a friend. These have all helped me emotionally feel much better! I still cannot do crowds of any kind , nor drive on streets that have any kind of busy traffic, and I definitely still have some days where I am just DOWN! But over the last year, I’ve learned that I feel even worse if I just stay in bed on my down days, both physically and mentally . It makes my back and my joints hurt more and makes me more likely the next day to stay in bed again and just mope around. So I have been faithful about getting up even on my bad days and at least getting my clothes on, brushing my hair and teeth , washing my face and putting at least some face cream on if not some mascara and Chapstick! On my tablet, I may only write for ex., wash the dishes and take my dog for a walk. So my message to you is, please don’t give up!! You were saved for a reason; a reason you may not see yet , but I believe you will in time. Even if your reason is to help others get through what you’ve been through, that is an amazing reason, and a craft that can’t be taught! But still very valuable!!! Reach out to people who care about you and at least try to understand what you’re going through . I have people, including family members who have no idea what sepsis is or what it’s like to be in the ICU 14 times in 18 months! No clue whatsoever and they make no effort to try to understand. For those people, including some friends and family, I just keep at arms length I.e., I make my conversations very short; give yourself permission to do that. We were not given the choice of our siblings, but we were given the choice of our friends. As an adult, I say, choose the family members and friends who stay by your side, root for you, & show how much they love you! And lastly, the biggest thing I have learned is to just embrace the things you can’t change, but make sure that you are thanking God every day for the little accomplishments. If you’re not exercising, try five minutes a day of anything. Sometimes I just dance for five minutes to my music and on bad days I sway to my music! 🙂 But overall, don’t forget that God saved you for a reason, and, although we may not see that purpose right now in front of our faces, I do know that your purpose will come to you one way or another. When it does, I hope you embrace it ! I have to admit, I also lost all my thick, long hair with all the Sepsis episodes…. Completely bald… But since I’ve implemented these things I have shared, my hair has started growing back as thick as it was, slowly but surely! I will keep you in my prayers , feel free to reach out whenever you want. I’d be happy to be a Sepsis warrior sister to you or anyone else! I too plan to reach out to the Sepsis alliance and see what that’s all about! Peace and love, Karen 🫶🏼

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Thank you. My dr says I'll recover by 3 weeks. I doubt it. I too was septic and had SAD the night after surgery. I also went into severe septic shock and ARDS.

REPLY
@lonna72789

Thank you. My dr says I'll recover by 3 weeks. I doubt it. I too was septic and had SAD the night after surgery. I also went into severe septic shock and ARDS.

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@lonna72789, recovery is different for everyone. You may also be interested in this related 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/

What symptoms are you experiencing at this point in your recovery?

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@lonna72789

Thank you. My dr says I'll recover by 3 weeks. I doubt it. I too was septic and had SAD the night after surgery. I also went into severe septic shock and ARDS.

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Hi I’m so sorry & but what is SAD?

REPLY
@karendn

Hi Wendy, my name is Karen and I am the queen of severe sepsis and septic shock… And even ICU stays! I have been severely septic and or found in septic shock 14 times in 18 months…( 2021 & 2022 )! I’m curious how you’re feeling now? I don’t know why I am still alive; but by the grace of God, I’m considered the “miracle patient” in Nebraska.! That is not a very admirable crown to wear!! And with each septic episode, I had bilateral pneumonia, acute respiratory failure, a massive heart attack due to the sepsis on one occasion, numerous pulmonary embolism‘s in my chest from the sepsis on 2 others and had SAD; or sepsis associated delirium on my last two occasions. Prior to all that, I lived in Arizona, mother of two, married to my high school sweetheart for more than 30 years and made my living as a registered nurse. My last hospitalization was June 2022. In the past year, I am unable to work as an RN, or any job for that matter. I am separated from my husband, had to sell my home and I live on Social Security disability in Nebraska now! I also had Covid December 2022, also septic with bilateral pneumonia while visiting grandkids in Arizona. Prior to that I was a very vibrant, proud , very social and hard-working woman. Always with a very positive attitude! Since then I have been diagnosed with CHF, CAD, COPD,… Etc.! I honestly feel due to my medical background, and knowing the right people and places to go to for treatment & diagnosis; that the last diagnosis of CHF, CAD & COPD have been debunked! Because each time I went in with very low blood pressure and very low O2 sats… It was the hospital that put me into congestive heart failure, miss diagnosed me with COPD, as well as CAD! That being said, I still have multiple after effects due to my chronic sepsis. I suffer from internal vibrations fairly constant, my cerebellum was damaged in two of the septic shock episodes, so my memory has suffered, I get exhausted, very easily, definitely don’t have the lung power to walk or do activities even a tiny amount of what I was doing prior , scattered thoughts and of course emotional and social dislodge. I would like to tell you a few of the things that I have done that have seemed to help in many ways. For the vibrations, I get into my bed and I turn on my mattress vibrator as hard as it will go; it makes it so I can’t feel my internal vibrations at all. For my scattered thoughts, I sit down every single morning with a tablet, and I write down in order of importance, the tasks I want to accomplish for the day. It may be that I am going to focus on getting my laundry done, stretching on the floor for 10 minutes and walking 100 steps. I also write down what I am going to eat for the day as well as drinking close to a gallon of water every day. For the afternoon/evening, the most I write down is take a bath and take an evening walk for 10 minutes! I have had to convince myself that doing something is better than nothing at all, no matter how fatigued I am , I make sure everything on that list is checked off before I go to bed. I now have added a Bible study online. I do lessons in the mornings when I wake up before I get out of bed for about 20 minutes! I’m telling you that has probably helped me the most ! I started doing “Noom” to lose weight from that 18 months which increased my weight by 50 pounds. I have never been overweight in my life!! So being on Noom for the last year I have lost 35 pounds, it’s been extremely slow… But progress nonetheless! I also make one day of the week an outing day, where I make it a priority to go visit a friend or go walking at the lake with my dog, or just go to the park, relax and take a couple walks during my visit. I also then take one weekend day that I give to myself to do whatever makes me feel best; which has been going to church on Saturday night and then to our town’s bar and grill for dinner with a friend. These have all helped me emotionally feel much better! I still cannot do crowds of any kind , nor drive on streets that have any kind of busy traffic, and I definitely still have some days where I am just DOWN! But over the last year, I’ve learned that I feel even worse if I just stay in bed on my down days, both physically and mentally . It makes my back and my joints hurt more and makes me more likely the next day to stay in bed again and just mope around. So I have been faithful about getting up even on my bad days and at least getting my clothes on, brushing my hair and teeth , washing my face and putting at least some face cream on if not some mascara and Chapstick! On my tablet, I may only write for ex., wash the dishes and take my dog for a walk. So my message to you is, please don’t give up!! You were saved for a reason; a reason you may not see yet , but I believe you will in time. Even if your reason is to help others get through what you’ve been through, that is an amazing reason, and a craft that can’t be taught! But still very valuable!!! Reach out to people who care about you and at least try to understand what you’re going through . I have people, including family members who have no idea what sepsis is or what it’s like to be in the ICU 14 times in 18 months! No clue whatsoever and they make no effort to try to understand. For those people, including some friends and family, I just keep at arms length I.e., I make my conversations very short; give yourself permission to do that. We were not given the choice of our siblings, but we were given the choice of our friends. As an adult, I say, choose the family members and friends who stay by your side, root for you, & show how much they love you! And lastly, the biggest thing I have learned is to just embrace the things you can’t change, but make sure that you are thanking God every day for the little accomplishments. If you’re not exercising, try five minutes a day of anything. Sometimes I just dance for five minutes to my music and on bad days I sway to my music! 🙂 But overall, don’t forget that God saved you for a reason, and, although we may not see that purpose right now in front of our faces, I do know that your purpose will come to you one way or another. When it does, I hope you embrace it ! I have to admit, I also lost all my thick, long hair with all the Sepsis episodes…. Completely bald… But since I’ve implemented these things I have shared, my hair has started growing back as thick as it was, slowly but surely! I will keep you in my prayers , feel free to reach out whenever you want. I’d be happy to be a Sepsis warrior sister to you or anyone else! I too plan to reach out to the Sepsis alliance and see what that’s all about! Peace and love, Karen 🫶🏼

Jump to this post

I am a fellow ICU nurse (former ) and I so admire your dedication to your recovery and just getting on with life . I do realize what you have overcome and what you have endured and I am blessed to have read your testimony . I have not had sepsis but I have had a great deal of change , surgeries , ICU stay , intubation , craziness and hallucinations that still haunt me to this day . And I have been having a hard time remembering why I am here and what do I do w myself ? I should be grateful to be here and realize what I CAN do instead of focusing on what I can no longer do . I have mourned my previous life long enough . Thank you for your inspiration and God bless you .

REPLY
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