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

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!! 🫶🏼🌹🫶🏼🌹

Hi I just shared my sorry today but when I read yours I noticed you mentioned body vibrations.. I have that to the point of distraction. I can’t due any vibration to my body bc my many health issues involve severe abdominal pain from multiple things and terrible neuropathy in legs from the septic shock. Tried many medicines and other therapies for neuropathy with no help and the vibration feeling is supposedly in my head…. I get told it’s but another thing you don’t want to be crowned as is what I got stuck with, “most unique and complicated “ competed in equestrian sports since I was a kid, not the best trophy. hah if you don’t laugh you’ll cry. Got any ideas

I wish I could tell you I did have a magical answer to your vibrations. My doctor says he’s never heard of it either and of course it got labeled with “long haul Covid”; Which I feel seems to be the answer to anything that they do not know! I still get the Internal body vibrations; Mostly at night, and they are very hard to ignore. I also have neuropathy in my feet and legs. I’m told from the numerous back surgeries I’ve had as well as abdominal ! The only thing I can tell you that has really helped me with those is when they start, if I’m at home anyway; I lay in my bed, which is electric, and I turn on the massage portion. It’s actually more like a bed vibrator; but for whatever reason, it takes them away much faster than normal! I have no idea why, I just know that thats what works for me. I’m very sorry you’re going through all this! People just don’t understand, especially when it’s out of the norm! I take Lyrica for my neuropathy and it helps to the point I can go about my day . But nothing actually takes it away. Sepsis and septic shock and even the ICU is no joke. It’s serious and you are very blessed to be alive!, Many people die from sepsis, let alone septic shock! I do have periods where I get extremely, extremely depressed; especially if I don’t keep myself busy… I’m not sure what that is caused by, but it is scary sometimes; we haven’t found a medication that helps with that. I do take Prozac for depression, which helps on a day-to-day basis; but every now and then I feel so, so alone! I feel like I am a grain of sand and that nobody really loves me and sometimes even that I wish I wasn’t here!!! I wish I had some kind of a solution or helpful hint to tell you about that; but I do not. I live alone, so I usually go to my room and stay in bed for days with my phone turned off. I usually stay awake for at least 48 hours, just thinking about how nobody cares! I can’t even tell you what brings me out of it; only that I’m blessed that it does! I do believe in God and I do believe he plays a role in keeping me out of the hospital and in my right mind most of the time . But I attribute it to my guardian angel honestly; that I eventually come out of that very dark, dark place!! Listen, I’m an RN that can’t work anymore; so I now do calm, sit down projects. I do what’s called “dotting”, and I color. Not just normal things; things that take me a long time and keep my attention on something else. I also bought an exercise bike, which I tried to use often since I’m still not wanting to go outside a lot; which is way way different for me. It’s getting better. There is hope; there is always hope… You just have to reach out for it and surround yourself with people that love you and care about you. I can’t say that anyone in my family understands how sick I really was and how close to death I was . Thank God for a very understanding and patience, boyfriend, best friend, and one of my seven sisters!! Horses are amazing therapy, and although I cannot ride anymore, I still love to be around them… Brushing them, talking to them, and just loving on them ! I also had a dog… She was a labrador retriever and had been with me for 17 years. I recently had to put her down for humane reasons… But that hasn’t helped things sometimes; I miss her so bad. So now it’s just me, navigating life the best way I know how , and including God, my father more often in my day-to-day conversations! Good luck to you and feel free to reach out to me anytime. I would be happy to share my phone number with you if you would like! Take care and remember that it’s OK to pray for yourself!!!…. ♥️🫶🏼☺️♥️🫶🏼😊♥️. My dogs name was ChikaJo & mine of course is Karen. Please feel free to reach out anytime! Peace & hope, Karen 😊

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 🫶🏼

Hi, I am sorry , that seems like an empty gesture but I truly do for you cause I am going through it too. 2 years ago I was in septic shock induced into a coma and ventilated. After multi organ failure of lungs , kidneys , and progressing fast. How I survived that is beyond me. But now. How to survive this. It sucks the will out of me daily. I too am looking for answers. I hope you find yours, keep faith in yourself. We can prevail,