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

@ew62, reading some of the posts in this related discussion you'll see that you're not alone in feeling down after an ICU stay related to sepsis.
– Sepsis: What's your experience recovering from sepsis https://connect.mayoclinic.org/discussion/sepsis/

Post ICU syndrome is a real thing and depression, PTSD, fatigue and lack of energy to get back on track are very common experiences. Members like @507 @psd0972 @tickleme1 @oregongirl @cindylb can validate that.

EW, it's not been a long time since you were in ICU. It may feel like it's been long enough, but 4-5 months isn't long to deal with complications of surgery, cancer, sepsis and ups and downs of ICU. Feeling down and lucky to be alive can co-exist. Do you think you are putting pressure on yourself to "bounce" back? Or do you feel like others think you should be "okay" by now?

I am putting a lot of pressure on myself to bounce back. I went back to work full time and am thinking it may not have been a good idea.

@ew62

Hello.....I was linked in to your post by the moderator regarding your sepsis experience. I too went into sepsis about three years ago with a cellulitis infection of my arm (due to lymphadema), a result of my breast cancer surgery. Even after three years I still feel 'off'....a little more tired and certainly less emotionally strong. I was fortunate not to be in the ICU but was hospitalized for a week and then had several more months of recovery, physical therapy and other medical needs. I feel more like myself all the time but still - it's just a sudden, random, difficult experience. I never considered sepsis as a possible condition and had little understanding of it until way after my experience and lots of research. I had my sepsis in mid November and was so grateful I wasn't dead I went ahead and hosted Thanksgiving Dinner at my house. It was a mistake. I was unprepared for the exhaustion and recurring waves of anxiety I experienced. My doctors dismissed my experience post sepsis, which was also disappointing. I think they see that you're still alive and don't truly grasp what a shock it is to both your physical body and emotional well being. Read up to understand the medical and physical part but also look at the Sepsis Alliance website. People there understand what you've been through. Also, give yourself permission to back off work and don't let them make you feel guilty about needing this time. I think I slowed my recovery down by feeling I 'should' just get on with it. Take care of yourself and as needed - educate the people around you, including doctors, to what you're going through. Sepsis is a bit of a mystery (why this person, why this infection, why now) and I think it even spooks the doctors a little too. Let's help them, our employers and family/friends to know more about this and help ourselves and others in the process. Hugs to you.
Cindy

Thank you for sharing your story, it is incredibly frustrating to have this “invisible” condition to have to explain. People who have not had sepsis don’t get it. It’s also weird to feel like I went into surgery as one person and came out of the whole ordeal as a completely different person. It’s unrecognizable, but is only felt. It’s also difficult to explain. Thank you again and I will look into the Sepsis Alliance further.
Blessings to you ♥️

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

Thank you Cindy, I too had sepsis after pneumonia that wasnt properly killed off so it regrew and I went septic. 2 ICU stays, 1 in a different hospital, intubated...it was awful. I got home Oct 2/22. I was weak and had poor 02 sats. I started feeling better physically but worse mentally. I hosted Christmas and was so overwhelmed I had to have my husband take over. That's not like me. I'm sad, depressed, and feel I'm barely here and contributing nothing. I miss my old energetic life. I hate this. Thanks for listening. Yvonne

Hello I know exactly how you feel. I had severe pneumonia, both lobes, & before I knew it I was waking up after being intubated for 3 days & had no idea where I was or even WHO I was. Turns out my pneumonia had turned into Acute Hypoxemic Respiratory Failure & from there I developed Sepsis.

That was 2 months ago & while my body is finally recovering, my mental/ emotional state is much worse. I’m just a shell of the person I used to be & wow I wish someone had warned us. Hospitals know patients are at risk, yet they say nothing about it, let alone offer any help. I just don’t get it.

I dont get it either. Its greatly affected my quality of life and a lot of days I dont care about anything anymore. That's not me. I'm usually happy, bubbly, laughing and this was a complete turn. Yes everyone says counselling. In my town theres at least a 6 month wait list. I feel hopeless. And I've tried the anti depressants. I hate sounding so negative but it's how my brain is working now. I hope we find something to help us!

@tanner0515, recovery takes time. Are you noticing small improvements as time passes? What helps?

Hi
I got anerobic pneumonia in Sept 21, I woke up on a Thurs morning and my right side hurt. It took me down hard i didn't get out of bed much and ran a fever of 104. Every night for 3 or 4 hours. On the 6th day I went to the hospital (thats another story) I was there 5 days before they figured out the antibiotics that helped, I thought it was 1 1/2 days and found out a couple months later. I was in for 11 days. I was so weak and completely disoriented I couldn't keep a straight thought. It was so frustrating like someone else was distracting me or something but it was me overlapping my thoughts. That's the only way to explain it. I have been trying to get back to normal ever since. Yes I think it would have been better for everyone if I could have just died then. I think so still. I was healthy before. No chronic illnesses I hardly ever got more than a cold. I had c19 over that summer but not seriously. Then in January my whole house got it I was down for 5 weeks so weak exhausted sick of being sick. And then it got better. In April I'd been feeling even more short of breath so went to ER. And taadaaa I have congestive heart failure. It's been over a year. I don't feel very good the last few months. Surgery is next. I didn't have insurance before. I'm so fkd up. Up one day down the next. I barely keep track of what I should do that day and it can take me hours to think right. PSS. The fever of 104 for 10 days. Oh and no one at the hospital told me I had sepsis. I read it on my discharge papers a few or ? Days after I got home. It was the reason I was admitted! No one in my family knew. It was a strange feeling that it was kept from me us. But anyway your not alone. And don't expect to many ppl to understand any of it. They think it's just the blood infection that your vein streaks up to your heart. I wish. Or my neighbor said "oh I know just how you feel I had to leave work early I had a cough and fever" I don't speak to her anymore. I think I'll be like this forever. But the good news is I probably won't have that long to deal with it . Both sepsis and cong heart fail have bleak mortality rate. Mostly the heart failure. Ppl do live long lives after sepsis if you make it past the milestones 5 year is the last then your mostly out of the woods. I'm angry, sad, pretend to be interested in something, but it doesn't matter. I'm pissed off at life.