Episode Transcript
[00:00:00] Speaker A: Just a disclaimer. We are not doctors, we are not medical professionals. We are just two girls who have survived sepsis that are navigating their recovery.
[00:00:07] Speaker B: If there is anything that you are seriously struggling with, we urge you to contact a gp. And if you think that you might have sepsis, you should seek immediate medical care. As sepsis is life threatening and time critical.
[00:00:19] Speaker A: We just wanted to pop a little trigger warning in as well that this podcast may contain content that listeners find distressing.
[00:00:26] Speaker B: Please listen with care and always remember to be kind to yourselves where possible.
[00:00:30] Speaker A: Hi guys and welcome back to the Surviving and Thriving podcast.
Today we are going to dive a little bit into post sepsis syndrome and how we have found post sepsis syndrome. If we struggle with post sepsis syndrome and just generally debunking the whole situation for everyone, we are going to start. I mentioned at the end of last episode that we were going to split it into three cognitive, emotional and physical. And I was speaking to Olivia and we said let's just go from the top to the bottom. So we're going to discuss cognitive post sepsis syndrome today.
[00:01:11] Speaker B: Yes. And I would just like to share that post sepsis syndrome consists of physical and or psychological long term effects that impact up to 50% of sepsis survivors.
[00:01:24] Speaker A: Yeah, yeah.
Is it actually a huge number? When you think about kind of any other big illness, any condition that you know, that's a big amount of people to have like lasting effects after being treated, after being 50% is loads. And if we think about 48,000 people every year, that's like 24,000 people with something that's basically a hidden disability.
[00:01:56] Speaker B: Yeah. That isn't, that isn't really recognized.
[00:01:59] Speaker A: Yeah. At all.
[00:02:01] Speaker B: Exactly. So cognitive symptoms, we're talking about brain fog, sensory issues, memory loss, vertigo, slowed thinking.
So yeah, I'm just going to go through some of these if you don't mind. And just like for brain fog, for example, this has. I've got a few notes that say it's more than just confusion.
Every other cognitive symptom is related to brain fog.
So basically it's just that you are in the middle of a conversation and you forget what you're talking about, which I do all the time.
I think that to me is just like, I just feel really tired when that happens because I'm just like. It's just like an full on exhaustion for me because it happens to me all the time.
[00:02:48] Speaker A: Yeah. I think also that we speak about post sepsis syndrome in the fact that it can be incredibly frustrating to those that suffer with it. Because, you know, again, like I was saying, it's an after effect of sepsis. And supposedly when you're getting better, these symptoms can creep in. Not immediately after having sepsis, it can be a few months after.
[00:03:15] Speaker B: Yeah.
[00:03:16] Speaker A: Also, it's not spoken about that much, so it can be scary for some people that are thinking that there's something really wrong with them. Especially I think when we speak about cognitive issues, that if anyone felt like they were having a conversation and were forgetting what they were speaking about mid sentence, that's a scary feeling to have if you're unaware of what it is. So I think definitely this episode will be helpful for people that maybe are like, what the hell is going on with me?
[00:03:47] Speaker B: Yeah. And I think it's just like feeling really spaced out.
[00:03:51] Speaker A: Yeah.
[00:03:51] Speaker B: And being able to, like, just process your thoughts, think about what you're trying to say next. It's like being static, isn't it? Like, you're just like stuck in this. Like, oh, what was I, what was I trying to say? What was I thinking? What was I doing next? And I think brain fog is quite scary because you can't. You don't really. You. I think you just think you're being a bit slow. You don't really relate it to, oh, this has happened because I've had sepsis before. I think you're just like, oh, God, I'm having a funny five.
[00:04:19] Speaker A: Or like, yeah, definitely. And it's hard to put your finger on because I think you don't always, like you said, link them up specifically, wouldn't.
[00:04:30] Speaker B: I think you just.
[00:04:30] Speaker A: If it's not happening every conversation, it's so easy just to be like, oh, for God's sake, it's happening again.
[00:04:37] Speaker B: Yeah.
[00:04:38] Speaker A: And again, obviously this postsepsis syndrome or pss, people might know it as affecting different generations. Obviously an older generation, it's probably swept under the carpet quite quickly with things like brain fog or kind of being slow because people are like, oh, it just happens when you get older.
But on one hand, for a person that's younger, it's probably taken a bit more seriously. But also it's probably more frustrating because you've never had that before. Like.
[00:05:16] Speaker B: Yeah. And you feel like you should be in your prime.
[00:05:18] Speaker A: Yeah. And you're like, oh, my God, I can't even remember his phone number. Yeah.
[00:05:22] Speaker B: Yeah. And you can't remember, like the littlest things. I, I'm, I. It's 20 times a day. I'll be mid sentence, then go, I don't know what I was trying to say. Yeah, I forgot what I was talking about. Mid sentence is crazy to me.
[00:05:36] Speaker A: That happens to me a lot as well. But also I. My brain goes at 2,000 miles per hour anyway, so I've always kind of been on the fence of like, is this pss or is it just my absolutely crazy brain. Brain going so quickly?
[00:05:54] Speaker B: Another one is sensory issues. So over being overstimulated can cause brain fog.
And the more stimulation, the worse the brain fog.
[00:06:05] Speaker A: Yeah. So that's a recipe for I. Overstimulation is like my new most frequently used sentence because I feel a lot recently, especially like when you get in this weird gray area of not straight after.
You're like not in the depth, we should put it, of recovery. But, you know, it hasn't been a prolonged amount of time since you've had sepsis in that. I find often now that I've never felt before, if, especially in my job, obviously with dancing. Like, there's music, there's talking a lot that sometimes I'm like, I just need five to like recalculate my brain and my center and then I'm absolutely good to go. I don't know, Liv, if you've heard of loop earplugs, but they were a absolute lifesaver for me, especially in early recovery. I would use them now, but I actually lost one of them and they are quite spenny to replace. But I swore by them, like, they just took the edge off, which I think is what basically. So you put them in your ears and basically it allows in, like, if you're having a conversation, you can still hear people, but it just dulls that, like, stimulating muscle.
[00:07:25] Speaker B: I fear I'd never take them off.
[00:07:28] Speaker A: I mean, I did get. I went like when I first went.
I went to go watch Harry Styles in the June, after I was poorly in the October. So, like for a big event for me, that was like my first, obviously that's a lot of people. And I was with my. One of my best friends, Freya, and I kept them in the whole time. And I swear that's like why I was able to enjoy myself as much as I did because it just like took the edge off, which is like, I think for anyone that gets overstimulated and, you know, I'm sure there's people listening to this that even if they haven't had sepsis, you know, everyone gets overstimulated every now and then.
[00:08:04] Speaker B: I've just looked on loop and some of them are like, I mean, have a little look on There if anyone listening's thinking, oh, that sounds like that could be for me. Some of them are obviously like quite expensive, but like there's like a, a pair on here for like £19.
[00:08:21] Speaker A: Yeah, I think they were the ones I had because I was like, I need them asap.
[00:08:25] Speaker B: Best for deep focus travel commute snapping.
[00:08:28] Speaker A: Oh yeah. And there's also ones now that they've developed that you can like press, press them and they like completely noise cancel or you can let like.
[00:08:36] Speaker B: Oh, crazy. Yeah, some of these are like. They've got so many different ones, like with extra noise reduction on demand. Best for concerts and festivals, live entertainment, sporting events.
[00:08:45] Speaker A: So they are for anything but they're really helpful.
[00:08:49] Speaker B: So many on there for like different things.
[00:08:52] Speaker A: And I had the clear ones because I remember being really self conscious of having them in and it was before they were like quote unquote popular. I know a lot of people that wear them now, but I remember feeling really self conscious of people being like, why has she got like earplugs in? Like, is she 12? Like.
[00:09:07] Speaker B: But right away I had.
[00:09:09] Speaker A: Yeah, I had clear ones and they were so good. I've only got one at the moment, but you know what, this is reminding me. Maybe I'll purchase some more because I've definitely been feeling overwhelmed recently.
[00:09:19] Speaker B: Yeah, that sounds amazing. And also like, I think that overstimulation can also be like smells and noises. Oh, noises really get to me. Yeah, like repetitive noise or like beeping.
[00:09:34] Speaker A: Any guys, if you've been intensive care and you've got PTSD, don't go to McDonald's, okay?
I don't go to McDonald's a lot, but I went into McDonald's like probably six months ago. It absolutely sent me west. I almost lost my marbles in the middle of McDonald's.
[00:09:52] Speaker B: This is going to be really horrible because I'm not like my voice is not good, but this noise, when it goes like every minute of the day.
[00:10:04] Speaker A: I know I was in A E. I had to go to A E with my brother just before New Year and I was in A E and all. Even like, you know, the sound of the blood pressure machine before it, before it goes off. I was literally like, oh, God, this is. Yeah, I know it's giving me actual chills. But it's so funny how we can both relate to the same like, you know, I mean, it is a thing.
[00:10:30] Speaker B: Okay, so then vertigo. I don't know if you get this.
So vertigo, basically make. In simple terms, makes you feel dizzy, right? Yeah, it's like A dizziness, spaced out. I get that quite a lot.
Yeah. Vertigo can last for a few hours. A lot of people live with vertigo, but I do feel like I, I get that and ways to deal with vertigo is like just slow breathing, taking sips of water, obviously sitting down.
But yeah, I do that quite a lot. And I. My balance is off, but I think sometimes. But I think that's the vertigo as well.
[00:11:08] Speaker A: Yeah.
[00:11:09] Speaker B: But yeah, you. Do you get that?
[00:11:11] Speaker A: I actually. It's funny you say this, it honestly could be absolutely unrelated, but recently I actually went to get my eyes tested yesterday. I promise this has something to do with it. Guys, I'm not just telling you my life story and my agenda, but I went to get my eyes tested yesterday, which I've never had done before. Literally my whole life, I've never been to the optician. And it's because, like, in the last kind of three or four weeks, mostly when I'm changing focus really quickly, like if I'm going from looking at one thing really quickly to another, I just get like a wave. Like, it literally feels like a whoomp of like dizziness and then I'm back straight away. But like, if it. Is it related? I don't know, is it something else? I don't know. But, you know, I've definitely felt that. And I think that this is quite a big thing for especially those people that have had sepsis that perhaps aren't able to be as mobile as others. I think that it can be quite apparent for those. For those sepsis survivors, for sure.
[00:12:11] Speaker B: Yeah. I think vertigo. What's scary, because I do think as well, like you said, I think a lot of these symptoms, it's very, very easy to not acknowledge them for what they are and to think, okay, this is the post sepsis syndrome. You're. I think a lot of people are quite hard on themselves and would be going, maybe I've not drank enough water today.
[00:12:29] Speaker A: Yeah.
[00:12:30] Speaker B: Or maybe I didn't get enough sleep. And I think it's just being able to say, actually this is probably the post sepsis syndrome. Yeah, not a funny five minutes or I'm feeling this way, that way. And just giving yourself that, like, it's very valid to. To be feeling these things and don't like, let yourself believe that you're just like, oh, I'm having a wobble, or like something this. Very valid. Even though they're something that can happen to anyone, it's definitely not just happening to you for no reason. This is the post sepsis.
[00:13:01] Speaker A: And I think it's important. Like, obviously we're doing a couple of episodes on postsepsis syndrome, but it's also, like, if you don't have symptoms of post sepsis syndrome, that doesn't make your. You any less valid or doesn't make your recovery any less than other people. You know, it. It's basically a randomizer. Pick or choose whether people experience these after effects. I think if you're listening to this and you're like, oh, well, I haven't experienced any of this, so, you know, does that mean that I haven't had sepsis as bad as someone else? This is absolutely not the case whatsoever. And, you know, you shouldn't quantify the severity of your illness and recovery on what other people feel. A recovery is a completely personal situation. I just wanted to add that in as well.
[00:13:51] Speaker B: Yeah, of course. We don't want anyone to feel, like, not validated, like your experience was your experience and it's very valid. And this is just unpicking what can be. But if it's not, then there's like, that's fine.
[00:14:06] Speaker A: Yeah. And I know people that I know. I speak about the survivors Facebook group for the UK Sector Trust a lot, but I kind of looked at it very closely when I first came out of hospital, but I kind of just keep a small eye on it now because there's a lot of stuff that goes in there. But, you know, there's people that have been trying to get their GP to diagnose and diagnose them with PSS for years and years and years and they're only just successful. So also, if you are feeling these symptoms and you're unable to get it, like, you know, clinically diagnosed, it doesn't, again, undermine how you're feeling. This is.
[00:14:44] Speaker B: Yeah, mine haven't been. Mine's not diagnosed because I know that I'm probably not get a diagnosis.
[00:14:49] Speaker A: Yeah.
[00:14:49] Speaker B: Because, like, again, like, all of these things, they're.
They're not visible.
[00:14:56] Speaker A: Yeah.
[00:14:57] Speaker B: So you can't. You don't have anything to show for it other than your thoughts and feelings, which I do feel like. I do feel like could be downplayed. And I do feel like a GB might go, maybe you're just tired. Have you thought about drinking more water? You know, like. Yeah, yeah, like, not as opposed to, oh, you're just dizzy, maybe you need to drink more. Rather than actually acknowledging the fact that you've gone through an awful time, you've had this really, really serious illness. Let's just not forget, like, right now, if anyone sepsis is life threatening. If it's not treated, you're going to die. So let's just like it's very serious. But I don't think a lot. I do think like a lot of it could be quite downplayed because the NHS is under so much stress.
[00:15:35] Speaker A: Yeah.
[00:15:36] Speaker B: But if you feel that way, like, keep, keep fighting for what you believe in because like you're. It's very valid.
[00:15:43] Speaker A: Yeah, for sure. And these episodes that we're kind of doing now on post sepsis syndrome. Oh my God, I can't get my words out.
You know, they're gonna be short and sweet and I think. I don't know about you. I think for me, the, this, the cognitive side of PSS is probably my least experience out of all of them. Obviously there's things that I have experienced, but, you know, it might be that we, when we speak about physical. For me, that's probably something I can tap into more. So for everyone, that just shows that, you know, two people that have survived very serious cases of sepsis, that it's different for everyone.
[00:16:27] Speaker B: Yeah, exactly. And it's just like you said, we're all different. Our makeup's completely different, so. And like you said, it's just a. It's 50 of people and it's just not luck of the draw.
[00:16:38] Speaker A: But you know what I'm saying basically is. Yeah, yeah.
[00:16:41] Speaker B: Another one is slowed thinking.
[00:16:45] Speaker A: Yay.
Yeah.
[00:16:49] Speaker B: So sort of similar to brain fog, I guess, but. Yeah, this would be like it taking a second to respond. Like people don't need to keep repeating themselves. I heard what you said, I'm just.
[00:17:01] Speaker A: Yeah. Processing.
[00:17:04] Speaker B: Sounds make brain fog worse.
So it could be hard to process without some silence.
[00:17:11] Speaker A: Yeah.
[00:17:12] Speaker B: If you're like trying to respond to something, just like you need to take a minute.
[00:17:16] Speaker A: Yeah.
[00:17:18] Speaker B: I also find people talking over each other makes it difficult to focus on things that are being said.
[00:17:24] Speaker A: Yeah.
[00:17:25] Speaker B: If you're in a group situation and everyone's talking and then off the back of that, it takes a lot of energy because you're, you're very like, sometimes I hold my head and like my brain hurts.
[00:17:37] Speaker A: Yeah.
[00:17:37] Speaker B: Because you're taking so much energy trying to like figure out what is being said or who you need to listen to.
[00:17:44] Speaker A: Yeah.
[00:17:46] Speaker B: And then another one. Memory loss.
[00:17:49] Speaker A: Yeah.
I mean, that's self explanatory, isn't it? That one? Yeah.
Like, I think that's a really difficult one to speak about because obviously a lot of memory loss for me anyway is like linked to trauma. And I guess if we're Talking about memory loss at the time of the trauma, that could be linked more to a PTSD side, but then perhaps memory loss, you know, like short term memory loss.
[00:18:22] Speaker B: Yeah.
[00:18:23] Speaker A: Perhaps could be linked more to a pss. So I think. Yeah, that's valid too.
[00:18:28] Speaker B: Yeah. This does say, like, about bad short memory.
[00:18:33] Speaker A: Yeah.
[00:18:33] Speaker B: And I need to write everything down. And this also acknowledges the fact that a few months before and since sepsis might be very hazy for you to remember. Yeah, I definitely don't remember waking up. I don't remember the months after, really. And I'm not sure if that's, like you said, the trauma response of, like, let's forget this because it will be easier to process or whether it's the actual fact of I don't remember it.
[00:19:01] Speaker A: Yeah, I think definitely. I know that both of us have spoken about the fact that lots of our memories at the time of being unwell with sepsis have kind of been made up from our loved ones and the people around us. I think it's easy to forget that we're able to talk about our story in quite detail. But a lot of that, especially for myself, has been, you know, the first. Especially the first five or six days for me was basically completely gone. That was filled in from family and friends and obviously as you unpack things and unwind, you remember snippets of things. But I think it's important to remember that 100%.
[00:19:47] Speaker B: I think that's pretty much all of the cognitive ones that I've got.
[00:19:53] Speaker A: Yeah. And I think that I just want to remind our audience that Olivia and myself are not medical professionals.
So we don't know about.
[00:20:04] Speaker B: We're just speaking from experience.
[00:20:06] Speaker A: Exactly. So I think that obviously we do the disclaimer at the beginning of the podcast every episode, but it's just important for you guys to remember that if you are really and seriously struggling with any of these issues, that it is so important that you advocate for yourself and, you know, use the resources that are available, whether that be a GP or whether that be, you know, the UK Sepsis Trust that is fully designed with trained sepsis nurses for things exactly like this. There's lots of resources out there for you and it's absolutely valid and okay for you to access them. Don't feel that you're unable to because of any situation or circumstance.
[00:20:46] Speaker B: Yes.
Yeah. I think the cognitive ones is.
I don't know, I do feel like they're a bit more.
They could just be mistaken for other things. Whereas I do feel like the psychological and physical symptoms are a lot more like, not relatable, but I think they're a bit more like. Then they're their own thing, whereas they're like memory loss and everything. Could be loads of things that could be bad diet, poor sleep, stress. Do you know what I mean? Whereas definitely, I feel like the. The physical and psychological are very more. They feel a bit more sepsis focused to me.
[00:21:26] Speaker A: Yeah, for sure.
[00:21:27] Speaker B: But. But, yeah, nevertheless, they're very, very valid and very valid.
[00:21:33] Speaker A: Yeah.
[00:21:34] Speaker B: And definitely so difficult, especially when you're like, you've never had it before and now all of a sudden you're like, what was I saying? What am I doing? You feel a bit like, impaired. It's like you feel a bit like it's. What's the word? Like, not. Not a disability. But yeah, you know, it's like you're just.
[00:21:55] Speaker A: And I'm sure you guys have heard me and Olivia do this all the time on the podcast. Like, we'll get right into a tangent and then you'll probably hear a very shoddy edit from myself editing the podcast because we've gone, hang on. What the hell was I talk.
Yeah, we do it all the time.
[00:22:11] Speaker B: All the time.
[00:22:12] Speaker A: But.
[00:22:13] Speaker B: And even in my personal life, I'm like, what? Yeah, what was I saying? And that's it. The thought's gone.
[00:22:20] Speaker A: Yeah. And that's frustrating in itself, especially if.
[00:22:23] Speaker B: I'm interrupted by somebody mid. Mid. Yeah, I do get, like, we, like a lot of people that I know will have, like, ADHD and stuff, so it happens, like. And I do it all the time to people, but if I don't say what I was meaning to say, the fault's gone.
[00:22:39] Speaker A: Yeah, it's gone.
Yeah, for sure.
But, yeah, that's us kind of sharing our thoughts on experiences on. And just generally talking about the cognitive effects of pss.
I think that this little miniseries, if you want to call it that, but these couple of episodes that we're focusing on pss, is going to be really helpful for people because out of everything to do with sepsis, it's the least spoken about. Obviously. Lots of media coverage and lots of, you know, all these storylines on the soaps, which is brilliant. That are happening, are all very much focused on the actual event and the afterwards. Yeah, not as much afterwards. And the recovery and the general survival, I think is what you should call it, because that's what it feels like.
So, as always, if you guys have any questions or you want to reach out to either me or Olivia, we are both contacts bought on our Instagram page, the Surviving and Thriving podcast.
And we're always checking through DMs and responding. You'll probably get one response from Olivia, one response from me. It's whoever's. Whoever checks message first. Basically, we work as a little team.
[00:23:51] Speaker B: Sometimes you're responding, I'll be like, oh, I'm going to respond to them too. I'm like, hi, it's Olivia.
[00:23:57] Speaker A: Yeah. Which is really nice.
[00:23:59] Speaker B: That's a bit of a short one because I just feel like it's a bit. I feel like we can delve deeper into the others.
[00:24:05] Speaker A: Yeah. But it's nice for people to, you know, even though we feel like we have perhaps more to say on the other symptoms, that there is still this space for people that feel deeper. Yeah, yeah.
[00:24:18] Speaker B: And we want to feel validated in your feelings, like, this isn't. This is because you've had sepsis, if you're feeling this way. And, yeah, it's difficult, but there are ways to work around it, like making lists and, you know, like, it's just learning to live now differently to how you did before.
[00:24:39] Speaker A: Yeah, for sure.
[00:24:41] Speaker B: Yeah.
[00:24:42] Speaker A: And we are sending lots of love to everyone out there and we hope that you're having a lovely week and we will be back very, very soon. We're gonna speak about the emotional side of pss, which is going to be a fun one to delve into, because I know we've both got a lot to say about that.
[00:25:03] Speaker B: Yes, definitely.
[00:25:04] Speaker A: Have a lovely week, guys, and we'll see you very soon.
[00:25:08] Speaker B: Bye, everyone.
[00:25:09] Speaker A: Bye.
