Post sepsis

[sickofthissick]

I was hospitalised with sepsis in January. Luckily it was treated quickly and I was only in for 10 days, but it was terrifying looking back. At the time I was flowing along with it all and just wanting to feel better.

There were complications with one of the iv antibiotics which caused a very nasty allergy and various other issues which I'm still managing that are being dealt it with slowly by another medical team.
I'm just so exhausted and mentally drained and down and just unable to get on with life.

I used to run and go for long walks, work full time (social work), see people, laugh, all in all a reasonably good life. I'm back at work 3 days a week and it's so so tiring and dificut

I just can't see through the fog.
I'm already waiting for mental health help for cptsd - so there's no point in asking for any help - that's a whole other stressful experience I went through trying to get seen.

Annoyingly I was coping mentally, knowing there was at least some hope that at some point this year (!) I'd get some counselling, but now I'm just physically and mentally shot.
Has anyone got some positive recovery stories?

Have you looked into the Sepsis trust? They usually offer lots of support/resources. I am not a Sepsis survivor, but i am a health care professional who teaches about Sepsis and it is a passion of mine. I do know they say give yourself at least 12 months to recover, but you may find you have a new normal even after this time. I hope you start to improve soon.

Thank you. I have been looking at them - really useful information. I feel a bit of a fraud in some ways as I didn't have to go to icu or have any really serious and life threatening (was seen and treated very quickly) so I keep thinking i should 'get over it'.
It's just rubbish..

We normally would have one booked by now and be off in May or June- but I'm also terrified it will come back and I'll need to be near hospital- probably irrational!
Maybe a weekend away would help.

Hahaha. I'll bite the bullet...maybe....!

My daughter had Sepsis when she was 19. She was very tired and easily exhausted for a long while.

Our GP / hospital drs were really helpful. She had to drink 2 Yakult every day and eat lots of full fat Fage yogurt to compensate for all the antibiotic drugs she had, which destroyed her gut biome. It impacts your health more than you realise.

She was encouraged to eat lots of small meals, no UPF, but easy to digest such as scrambled eggs, wholemeal bread, good ice cream and well cooked chicken or turkey with salad and potatoes.

She just walked around the house to start with, then garden and then up the road and back.

It took about 6 months for her to feel comfortable with her daily routine. A year before she felt herself. She climbed Kilimanjaro when she was 21!

Be really kind to yourself, it’s a devastating experience and takes time to rebuild your body and health.

Thank you! Yes I'm having kefir and bio yoghurt and suchlike which is certainly helping. I lost about a stone which was a bit scary and I do try to walk, at least round the block or upstairs etc at work.
I had no idea how much it affects you. I've been chatting to people from the sepsis trust fb page today and it's frightening :(

Give yourself time! I had sepsis about 10 years ago, like you I wasn't in ICU and was "lucky" to respond well to antibiotics and only in hospital for a week. I was in my 30s and vv fit and healthy and it knocked me for six. I think it took about 3 - 4 months to feel anywhere like ok and at least a year to be properly back to normal. And even then I would still get days where I was just completely wiped and unable to move. But I got there and you will too! I think my best advice would be to rest before you need it, if you do something one day then spend the next day doing nothing. Don't underestimate the effect this will have had on your entire system.

Hope you get the ptsd help soon as well. Not sure if the Sepsis Trust can help with counselling for the sepsis part at least? I still have flashbacks to my time in hospital and major infection anxiety, as well as fear of how things could have turned out differently. But mostly I'm good, stay positive and I hope you start to feel better soon, take care!

I had sepsis 10 years ago. I had an emergency hysterectomy to remove my uterus which was the source of the infection and was in the ICU then a normal hospital ward. I entered the hospital weighing 70kg as I had just given birth and came out weighing 40kg. I lost all my muscle tone and had to learn to walk again when I got home.

Recovery was very long, I felt normal-ish after about 12 months but really I think it was almost 3 years before I built up my strength and put all the weight back on again.

Your body has been through a huge trauma and although you want to get back to normal ASAP (or at least I did) you will need a lot of time and patience. Be gentle with yourself, rest when you need to and if work is too much, push to work from home so you can take breaks when you need to. There are also lots of secondary effects that can appear in the months after your recovery, but the Sepsis trust have great info and support for this.

On the positive side, 10 years later I have completely recovered, I can do everything I used to do before and then some, so you will definitely get there OP!! Best of luck with your recovery!!

My husband has had three emergency bowel operations over the last five years and he got sepsis each time. He lost a lot and weight and was very run down and exhausted each time (a couple of doctors actually told him they were amazed he survived when he ended up in ICU one time). But he did eventually get back to strength. The last time it took him possibly six months (he’d lost a huge amount of weight while ill). I wondered if it was going to get there, but he did. Lots too small but nutritious and high calorie meals spaced out throughout the day helped. Adding in milky hot chocolate etc. And he did a couple of gym courses for people recovering to help build up strength and muscle.
Take your time and keep building up. Good luck.

This was me two years ago (almost exactly in 2 weeks). It’s absolutely normal. Including the being scared to go on holiday bit.

My GP said at least 6 months as a rule golf thumb. Occ Health said 12 months. I noticed a big difference at around 11 months. I’d say even now things are still not where I was before but much better and still improving.

Not being in ICU doesn’t mean you weren’t really really sick. It took me quite a while to realise that so don’t feel like a fraud.

Had sepsis at 40, 2 months after giving birth. Cause was tonsillitis but I don’t have a spleen. Was in ITU (where I breastfed to keep my supply going) Easily took me 6 months to feel anything like ok and a good year to get over it. Had to give up BF wasnt recovering. It just takes time and I reckon more dependant on age etc

Cut yourself some slack. It’s a very tough gig.

I had sepsis a year ago and the exhaustion following the infection was like nothing I’d ever experienced before. I had kidney issues following the infection and that also took a while to resolve. The only way I could describe it is feeling like I hadn’t enough energy to get through the day and I also had a very poor appetite. My GP advised a high strength probiotic, small meals several times a day when I felt like I couldn’t eat, at least 2 litres of water daily and plenty of rest.i had to take a nap twice a day for around a month and it very gradually started to get better. After about 3 months I was back out walking and needing to nap less. I went back to work after 4 months on a reduced 3 day week and the exhaustion hit me all over again so I had to take another 2 weeks off and then try again.
At about the 7/8 month mark I was feeling much more myself and now 1 year on I’m fine.

Wow. Thanks so much everyone. It's awful but also reassuring to know it's not just me going mad. Flashbacks are definitely an issue now. The cannulas kept blocking so I had to keep having new ones and my veins are shit so that was awful. Also the antibiotocs were so grim. I was on vancomycin which a medical colleague said they nickname 'bleach' - it gave me the worse vomiting and toxic diarrhoea (sorry!) I've ever had.
I will be sensible and rest when I can and I really appreciate all your stories .

I may also have to rethink working for a bit I guess. Even three fairly easy days are feeling too much. We just have such shit sick pay I kind of need to :(

I had sepsis when my baby was ten days old. I was in hospital for ten days I think. It took months and months to start to feel 'better' but truly I can't differentiate between the sepsis and the new baby tired. I don't feel like I ever fully recovered in terms of energy but maybe that's being a parent lol.

I've had it twice, both times requiring eight hour emergency operations. I was on life support in ICU both times too and in hospital for over a month each time. Most of it was spent in a high dependency unit (three weeks).
I had a debrief by the intensive care team and DH was given advice. It is a long recovery. I was told a year and alongside the pain the exhaustion was the most debilitating. I also had an infection in the central line and incision site, but wasn't well enough to go back into theatre, pneumonia and an AKI (which used to be known as kidney failure).
I feal incredibly fortunate to have survived, but it doesn't stop the way it makes you feel. I also have a life limiting condition so am probably different to most here.

My partner had sepsis and was on dialysis due to it, was very poorly in intensive care and then HDU and was finally discharged and visited thrice daily by district nurses for I.v antibiotics. His palor was grey and he list a lot of weight.

His recovery was slow and marred by the fact that on his return to work his employer of two decades wasn't prepared to assist with his phased return and did everything in their power to get rid of him backed by two employees who worked under him who wanted him out, one of whom wanted and suceeded in taking his job. He was too poorly to fight it.

He went on to develop depression but got help from the doctor and went part time with friends rallying around to find him work. We think he had post sepsis syndrome although he never got a diagnosis as such.

He is much better now. It did take a lot of time unfortunately and he did put a lot of hard work into getting better slowly and developing his strength and having plenty of rest - his main symptom was exhaustion. He also needed NSAIDS for joint pain. It does get better eventually but it can take time. You can get a lot of info from The Sepsis Alliance. Good luck.

That’s so hard. We were there too. Ended up depleting the whole of our savings and then covid hit and I lost my job. So took us ages to get back on our feet. Could you ask for lighter duties?

My DH has had sepsis twice, in high dependency unit for one episode, in hospital for 2 weeks each time. It took him months to recover physically, longer psychologically.

You may not want to hear this but have you gone back to work too soon? I’m also a social worker and know the demands it makes on you - there’s no way I could have managed a case load if I was as ill as my DH was. He was off work for 6 weeks, on a long phased return and his job doesn’t have anything like the demands made on social workers. Really watch yourself, trying to push through may set you back further, slow and steady.

This is great advice, basically what I came here to say. I had sepsis a couple of years ago and besides being the single most terrifying experience of my life, and the complex emotions and wider reaching effects of that, the exhaustion made it really hard to feel I would ever be ‘normal’ again. Everything wiped me out, id gone from fit and able and busy all the time to feeling like a short mooch around my garden was going to make me keel over. It was a hard pill to swallow.
Now, though, I’m okay. You’d never think I’d had it at all, really. You will be yourself again, just try not to rush yourself.

Kindly, this JUST happened! No wonder you feel so shit! I would definitely look at the work situation. I know you say you need to but you can talk to places like your mortgage company, council tax etc and if you’re proactive they can and do help xx

Thank you for this thread.

I thought I was alone, not trying hard enough and mentally unwell. My life will never be the same and I need to adapt slowly, instead of my normal impatience. From the people here sharing their experience it is such a relief to know time is required, not a few days or weeks.

Take care of your self @ScathingAngelAgrona

@sickofthissick I went back to work about a fortnight after I came out of hospital. It was a huge mistake. If you can’t afford to take longer off is it possible to amend your work slightly or work from home for some of the days?