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 another episode of the Surviving and Thriving podcast. Yet again, we've had a little tiny break for a few weeks whilst our schedules have been getting aligned. In the last two episodes, we've been speaking about the cognitive and emotional effects of post sepsis syndrome. And today, as kind of like the last episode of this miniseries, we're going to be talking about the physical symptoms. And guys, you better buckle in because if there's experts on this topic, me and Olivia have got it sorted. Yeah, it's us.
And like I said in the other two episodes, obviously we can comment and speak about the emotional and cognitive, but I feel like the physical symptoms for us is what we felt has affected us the most. And at our age, it's also like, for me it's the biggest, like, battle boundary.
[00:01:29] Speaker B: One of the most debilitating for sure.
[00:01:32] Speaker A: Yeah.
[00:01:33] Speaker B: And challenging because I don't know about you, but I always feel like if I'm trying to like, obviously your mental health after something traumatic like that is always being worked on. I always find that when I'm in physical pain it makes it worse because I'm like, it's a constant reminder for me.
[00:01:54] Speaker A: Yeah, definitely.
[00:01:55] Speaker B: And it's such a. I think it's a trigger actually, because it's like where it stemmed from and you all know that as well, right? Yeah, I think that like when something's, when it's painful that way it just makes you think, oh my God, am I going to be unwell again?
[00:02:10] Speaker A: And I think that like, mental health and physical health have such a strong link that people, like, I don't think it's spoken about enough because even like, obviously if you haven't been through like illness, chronic illness, but you know that like, if you're having a low day, you feel like your body feels different. If you're having a really positive day and you're happy and you're not like worried about anything and they link so closely together. And I think especially in Our case, it works both ways. If I'm having a low day or a stressful day or an anxious day, I can really feel it. I carry a lot of my emotion physically.
[00:02:51] Speaker B: Yeah. I was gonna say, is there not, like, a really big link towards as well, like, trauma being stored in your body?
[00:02:57] Speaker A: Yeah. Because in yoga, you can, like, do a hip opener and it's meant to, like, release trauma or something like that. So they say.
[00:03:05] Speaker B: Because you sometimes us. Like, sometimes I'll feel myself, like, like, clenching my shoulders and then I'll be like, right, relax. Because you're like, that's trauma being stored in your body and your body not being able to relax properly, obviously.
[00:03:19] Speaker A: Yeah, I think that's like, for everyone. That's probably one of the most common physical links that you have. Like, everyone will be able to relate with. Like, I don't know, say you've got, like, a stressful meeting coming up or something big coming up after it's finished. Straight away, you can feel that. Relax.
[00:03:36] Speaker B: It's like letting loose, isn't it? Like, this whole, like, you can just, like, you soften up.
[00:03:40] Speaker A: Yeah, definitely. And I mean, like I said to structure this podcast is this episode is probably going to be slightly all over the place for us because I bet that we'll just kind of word vomit it all out, because there's a lot that we want to say, and obviously this is the place to do that, but bear with us.
[00:04:02] Speaker B: Right?
[00:04:03] Speaker A: Yeah, definitely. So. So I guess we can start with kind of explaining, obviously on the podcast you guys have all listened to. Well, I say you have all listened to it. You might not have. This is the first episode. Hi.
But mine, Olivia's story, obviously, our sepsis originated from different infections, but we both suffered a lot with an infection in our hip joints. We were just speaking before we started recording.
My infections were held predominantly in my right hip joint and then my left SC joint. So, like the collarbone. And that was like, my main physical symptoms, especially heading into hospital.
And then, Olivia, if you want to.
[00:04:48] Speaker B: Explain yours as well, my initial symptom was my hip pain, which we speak about us all the time. Right. We message each other. Like, I messaged Taz last week. Like, do you actually have any idea why we're still in so much pain?
[00:05:03] Speaker A: Yeah.
[00:05:04] Speaker B: Nice to get an answer from somebody.
[00:05:07] Speaker A: Yeah. And it's the why.
[00:05:09] Speaker B: And I wish we asked Ron when he was here.
[00:05:11] Speaker A: I know. We should have.
[00:05:13] Speaker B: Like, I wonder if he would be able to tell us. We could message him and ask so we can, like, tell people listening Maybe that, like, what. What we found out. But, like, so my initial pain was in my hip. You. Yeah, that was my first symptom. And I still. I still don't really get that. Like, do you get that?
[00:05:32] Speaker A: Well, I've spoken to a lot of people about it, and especially for strep A, which the infection that I had, for some reason, there's a really high correlation with strep A and hip joint infection. Like that. It's just a weird correlation. Yeah.
Also, at the same time, I've been told a lot, and I know that Ron spoke about it on the podcast, is that an infection obviously usually goes to the weakest place first. And in my case, they have this theory. They never know exactly how my sepsis developed fully, but they have a theory that I might have, like, had a small tear in my hip flexor and the infection targeted that weak spot in my body.
[00:06:17] Speaker B: But why does it go there? Like, I don't get that.
[00:06:20] Speaker A: Well, I mean, and I thought the infection was strep A. Yeah, well, the infection is. Strep A starts.
[00:06:26] Speaker B: You've got strep A in your hip?
[00:06:29] Speaker A: Yeah, the bug.
[00:06:31] Speaker B: Really?
[00:06:32] Speaker A: Yeah.
[00:06:32] Speaker B: Pneumonia in my hip.
[00:06:34] Speaker A: Well, I don't know whether with pneumonia, because pneumonia. I don't know, like.
Yeah, I don't know if that's like, the original. Like, if that's the name of the actual bacteria infection or whether that's the name of an infection. You know what I mean?
[00:06:49] Speaker B: Because I was told I had. Give me a second.
This is what.
This is what my family were told I have.
Was told I had.
[00:07:02] Speaker A: And just for the listeners, whilst Liv's having a look for that, obviously for both of us.
Yeah. I don't even know how to say that.
[00:07:14] Speaker B: Staff, is that what you had?
[00:07:16] Speaker A: No, because mine's streptoc. Oh, my God. I'm not allowed to say it now. Streptococcus. That's the name of it. But that's a staph infection.
[00:07:25] Speaker B: Yeah, that's what I had.
[00:07:26] Speaker A: Yeah. Which will. That will be the infection that went to your home. But then obviously you would have then developed pneumonia from the sepsis.
[00:07:35] Speaker B: I thought you.
[00:07:37] Speaker A: Pneumonia is an infection, but you know what I mean? So pneumonia, I'm assuming, is. Archie, I don't want to say this.
[00:07:43] Speaker B: Frequently found in the upper respiratory tract and on the skin.
[00:07:47] Speaker A: Yeah.
[00:07:47] Speaker B: So I got sepsis from that.
[00:07:50] Speaker A: Yeah. That's your original infection, I'm assuming.
[00:07:54] Speaker B: I wish I could speak to somebody and for them to, like, break it down. Yeah. Just so I could, like, I feel like it would do me the world of good to just know. And I don't know why. I just want to know.
[00:08:03] Speaker A: Well, I think it's normal for anyone. And I was just going to say, before you found that especially if you've been in intensive care, a lot of the time you actually don't. Until your discharge notes, you don't actually find out everything that happened. It's not.
I've got my discharge notes here somewhere.
[00:08:24] Speaker B: Have you got your like, have you. Did you ever get your nurse notes back?
[00:08:29] Speaker A: Not my full hospital notes. I never.
[00:08:32] Speaker B: Please, can I show you them quick?
[00:08:33] Speaker A: Yeah, go.
[00:08:34] Speaker B: I'll show you in a second. But this says. I think it's staphylococcus.
[00:08:39] Speaker A: That sounds about right.
[00:08:40] Speaker B: It's a type of bacteria that can cause sepsis, a life threatening infection of the bloodstream.
[00:08:45] Speaker A: Yeah. So that's the infection and it says.
[00:08:49] Speaker B: When staph bacteria enters the bloodstream, infection or otherwise wound, which I had no womb. So that's what I mean. It's just. It just feels really, really weird. Like the whole thing's just weird.
[00:09:01] Speaker A: Yeah. And you know, obviously with those discharge notes, most of the time people are sent home with their little piece of paper that says like what they were unwell with. And no exclamation. That's the wrong word. Ex. Explanation. Oh my God.
And I'm working with my hospital, the junior, which I've spoken about a lot. And we're trying to set up a service where every single person who has sepsis on their discharge notes has a meeting with the sepsis nurse after discharge.
That's what we're trying to set up because I was kind of speaking to them and I think that that will help bridge the gap between admission and discharge. Because I felt there was this massive. Well, I mean there was no A and B. It was just I was in hospital and then it was like, see ya. Because lots of the help that I've received I've sought out myself.
If I wouldn't have done any extra work, I would have literally had one meeting. Leaving hospital.
[00:10:06] Speaker B: I think it's terrible.
[00:10:07] Speaker A: Yeah. And nhs.
[00:10:10] Speaker B: Yeah. And I think that, I know that the na. I know that they're stretched. Right. But I just think.
And like no one will get it unless they've been through it. But like that is like, like so life altering to go through something like that. Especially like at any age, but like, especially in like younger years where you like don't. Not that you would expect it in a later age, but like if you're older and your immune system's a bit weaker and like, do you know what I mean? Like, you might have other health conditions.
These things are like, more like. Not that you expect them, but you know what I'm trying to say, like.
[00:10:48] Speaker A: Yeah, I think that especially.
Yeah.
[00:10:52] Speaker B: And you're not expecting it.
[00:10:53] Speaker A: Yeah.
[00:10:54] Speaker B: And I just think, like, it feels like, like you said, you leave hospital, you have one appointment and that's it. Bye.
[00:11:00] Speaker A: Yeah.
[00:11:01] Speaker B: Any follow up on your mental health or how you're doing, you don't, you don't get the chance to like, debrief with anybody, do you know? And I just feel like, why we ever get, like, why isn't there, like, they, like, meetings? I even said to the lady, like, why aren't, why aren't there groups to support people that have been through this? They could have volunteers. I'd do it, I'd run the group.
[00:11:21] Speaker A: Yeah.
And. Well, again, I think that, you know, we always say this, that we're so grateful for the NHS and the work they did, but there is definitely big gaps, especially with kind of funding and support for sepsis survivors. And I think that's kind of. We can see that firsthand. And I guess that what you were trying to say as well, that with pss, lots of the symptoms that PSS comes with, also these symptoms, you can just have them as you age. So I think perhaps for an older person it's not expected, like you said, but you're maybe more prepared, more like ready for that, those kind of symptoms. Whereas as a younger person that's experiencing them, it feels so alien and so, like, frustrating because you see everyone else your age not going through the same thing. And again, that's not.
Yeah. And that's not us trying to.
What's the word? Like, anyone that's listening to this, that's, yeah. Older and has been through this and you're like, oh, wow, it's not valid for us because, like, that's not what we're trying to say in our experience.
And from speaking to other sector survivors that are of the younger generation, that is one of, like the biggest, like, links between the physical and mental health is those physical symptoms that you just don't expect to experience at this age.
[00:13:00] Speaker B: Exactly. And like, I just think, I think it would just be so much easier to have some kind of clarity on it so that, that we can just like, I just think knowing would be so nice just to like, to get that and to know that I'm just looking for my, like, I've just Found my. This is my not discharge summary, obviously, but like, this is the notes that I got back from my stay. Let me get them quick.
[00:13:27] Speaker A: Yeah. Whilst Olivia's going to get that, I've just googled post sepsis syndrome physical symptoms and we can just kind of have a little talk over them and debrief them. Common physical symptoms of post sepsis syndrome. Fatigue and weakness, which we have spoken about kind of in the cognitive episode. But we can touch on that again because I've actually had a visit to the GP in the last week because of the fatigue and just trying to get to the bottom of it.
Joint pain, which, as we're saying still two and a bit years later, is like my most frustrating symptom. And obviously I'm assuming that's with septic arthritis, that's elevated as well.
Breathing difficulties, shortness of breath or difficulty breathing. I can touch on that one as well. Especially with such a physical job.
I've definitely experienced that swelling in limbs. I haven't. While this is saying fluid retention in the limbs, I actually haven't had much of that, but I have heard and spoken to people who have found that really difficult. Sleep disturbances, which we've gone into at length before, but that is obviously a big part of pss, especially now also, but especially kind of straight after discharge. Hair and skin changes, hair loss, brittle nails, dry and itchy skin, which I think we've touched on a little bit before. But maybe we can dive into it today because that was something that affected both of us and Olivia is very knowledgeable about hair care and all that fun stuff.
[00:15:13] Speaker B: I try.
[00:15:15] Speaker A: And then a few more. Increased infection risk, which we all. I hope after. If you've listened to lots of these episodes that you'll know that after having sepsis you're more prone to, like, reoccurring infections and doesn't have to be the same infection can be different ones. Your immune system is slightly weakened post sepsis organ dysfunction, reduced function of organs. That's obviously more a symptom of how much damage the sepsis has done to your body, as opposed to them shutting down after an admission and then changes in taste or appetite, which I've heard a few people say. I didn't think I. Apart from obviously straight after coming out of hospital. But whether that was just because Live, laugh, loved the nhs, whether that was just because the food was not the tastiest. So when I got home, I was like, oh, my God, this all tastes so good. Or whether that was because of sepsis, I'm not Quite sure. But that's what comes up when you Google post physical symptoms of post sepsis syndrome. So let's come back to that. But let's just talk us through. Whoa. For. I say for the audio listeners, no one's watching us talking, but Liv has got a huge fat wad of hospital.
[00:16:34] Speaker B: There's like, got to be 200 pages.
[00:16:37] Speaker A: Yeah. If not more. It's like, you know when you go and buy an A4, like a sheet of A4, and it comes in that massive wad. Yeah. That's basically the size for.
[00:16:48] Speaker B: But it's so weird because obviously, like.
[00:16:51] Speaker A: Have you read through the whole thing?
[00:16:52] Speaker B: Yeah.
[00:16:53] Speaker A: Wow.
[00:16:54] Speaker B: Maybe when I'm like, when I'll message you, like, some bits that. And I've worked in hospital before, so, like, consultants handwriting is diabolical and you can barely read anything.
[00:17:07] Speaker A: Yeah.
[00:17:08] Speaker B: But there are some parts, like, I know we're not going to go, like, right into this because I know that it's not very fun for other people, but, like, I can read some of it that's like, basically says, oh, see, this says, I spoke to Olivia today alongside her boyfriend following her admission for 11 days with MSSA bacterium and sacriolic septic joint.
[00:17:31] Speaker A: Yeah. Which is like doctor talk. I know that second one, I think that's basically doctor talk for septic arthritis. The first one I'm not even gonna try and explain.
[00:17:40] Speaker B: Yeah. You know when you're just like, so what? But then, like, so you know, when you went into hospital.
[00:17:44] Speaker A: Yeah, yeah.
[00:17:45] Speaker B: At what point did they say, like, sepsis? Because when I spoke to somebody about this, I was told that if you.
If your family are like, if they suspect that you've got sepsis, like, your family have to be told straight away.
[00:18:01] Speaker A: Yeah. I think that obviously, when I first came into hospital, basically weren't.
[00:18:07] Speaker B: No discharge a transfer summary. You don't have one. You would have one if you got your.
[00:18:13] Speaker A: If I ask for it.
[00:18:14] Speaker B: Probably, yeah, if you ask for it. Yeah.
[00:18:17] Speaker A: When I first went into hospital, my parents weren't told much at all. That's because obviously people were busy working around me. When I went up into intensive care, I think they told my parents that it was suspected sepsis. And then obviously, once the blood cultures came back, they then said confirmed sepsis. But even then it wasn't explained. They just said, taz has sepsis and she's really unwell and we're going to try and do everything we can for her, but she is really unwell.
Which again, for, like, explanation, when you're telling Someone that their daughter is so unwell that they're doing everything they can, but they can't promise anything. To not give any explanation is wild to me. But obviously at the same time, I can't even imagine what it's like for that to be your working environment 24 7. And it obviously just becomes so natural to them that they. Maybe they just get used to not having to explain these things.
[00:19:16] Speaker B: Yeah, like I'm trying to find on my. On one of them because this is from the 5th. Oh, no, sorry, that's my birthday. This is the 4th of. Oh, this. So this must have been when.
This is 4:00 in the morning. So this is obviously when intensive care, intensive care were called. But this doesn't even say, like, it doesn't even say on it. Like one of the forms from A E says sepsis question mark. But like before that. That makes me like wonder, like if someone's written sepsis question mark, why wasn't I, like. Because that was two days before I ended up in intensive care. So I always just think, why wasn't anything done so that that didn't have to happen.
I mean, like, why didn't. Why was nothing done quicker? So that that didn't have to happen to me, but. Cool. Thank you, guys. Sure. It's all character building and everything.
[00:20:09] Speaker A: Yeah.
[00:20:10] Speaker B: Do you want to go through. Should we start with like one of the symptoms of and then we'll just like go through?
[00:20:14] Speaker A: Yeah, of course.
So fatigue and weakness was the first one. And like I said before, I actually went to my GP last week or the week before about my fatigue because I think I've had like a really busy period recently and I'd kind of put it down to that. And I've always, since being unwell, I've always felt tired, but I hadn't, like, it hadn't really got to me and I'd kind of just been pushing through until recently. I was like, it is not normal.
Every Saturday is like one of my only days off in the week. Every Saturday I am like conked out. Like, yeah, I'm on the sofa falling asleep. And that's like, that's not normal for someone. Like, obviously I'm able. Like if I had plans I'd be able to go out and that. I think that's a deceiving thing when you have. Or you feel like you have fatigue. Is that like.
Also I think I've just learned to like mask it and just get on with stuff. But it's really hard to explain, like when in it's a diff. It's a different feeling to just feeling tired.
[00:21:29] Speaker B: Yeah.
[00:21:29] Speaker A: I don't really know how to explain it. I don't know if you. Any better words?
[00:21:34] Speaker B: Not really. Apart from what I was just going to say that, like, I find the fatigue, like, it's quite depressing, really, because it's just this, like, constant.
[00:21:43] Speaker A: Constant.
[00:21:44] Speaker B: And it's like I always just tried to, like. Because nobody else understands you just. I'm just so tired. It's not tired.
[00:21:51] Speaker A: Yeah.
[00:21:52] Speaker B: Tied. It's like tired on steroids. It's like constant, like, exhaustion is a good word.
[00:21:58] Speaker A: Yeah. It's so strange. And, you know, and then sometimes I feel guilt. Like, I feel guilty. And that's the word, like, the flipping, like, sponsor word of this podcast. But I feel guilty for feeling fatigued because I'm like, surrounded, obviously that. By people that, you know, if they've done a longer day than me or done more stuff. And then I'm there thinking, oh, my God, I'm so tired. I'm so exhausted.
[00:22:22] Speaker B: I think it's a miracle that we both work full time.
[00:22:25] Speaker A: Yeah.
Yeah.
[00:22:27] Speaker B: And like, with. With. No. Like, I tried to speak to my work about this and they don't really have a lot to say about it, but, like, I have absolutely no.
What's the word?
This happens to me all the time as well. Just forget words.
Hang on.
[00:22:44] Speaker A: It's coming to her. It's coming to her.
[00:22:46] Speaker B: Guys, A. What's the word? Like, but, like, no, you know, like, I'm like, I can't think of the word. This happened. This is my life.
Like, what's the word? I'll think about it and then, like, I'll come back, basically. You're not asking for any adjustments is the word.
[00:23:05] Speaker A: Yeah.
[00:23:06] Speaker B: You're not asking for any. For the fact that, like, do you know.
[00:23:09] Speaker A: Yeah.
[00:23:10] Speaker B: Like, you've been for a lot. This has happened to you. Like, really, you probably should be working shorter hours or should be on same shifts. Because I work shifts as well. So, like, my shifts are like, I'll do it early, late, middle. Early, late, middle, middle. Like, they're all over the place.
[00:23:25] Speaker A: Yeah.
[00:23:26] Speaker B: There's all. I probably really need a routine.
[00:23:28] Speaker A: Yeah. And I think that especially, like, with the fatigue and stuff, the further post discharge you get, like, for me, the more I feel like I can't speak about it to people because it's like, oh, boy, he cried wolf. It's not that. Because I know it's not, but that's how it feels to me. I'm like, oh, if someone says, oh, how are you feeling? Like, I can't just say tired, like, because, you know, same, same stuff, different day kind of thing. And I went to the gp. Anyway, long story short, I don't want to drag this episode out too long. And I had a blood test and my iron levels were, like, a tiny bit low, but nothing that should have meant that I was feeling this tired all the time. And the GP suggested that perhaps I go on an antidepressant, which I'm not even going to get into it in detail because it frustrates me a lot personally. It's a personal decision. Personally.
I don't want to take any medication for my mental health. It's just not me. And, like, if it. I know it helps some people massively, but also, I don't think that's the root of the problem.
Straight away, as soon as the blood test came back, that was the immediate response, was that, oh, well, when you're feeling a bit down, which obviously she asked if I was feeling down and I wasn't gonna lie to her and say, no, like, I'm great. Love. Love feeling like this.
The immediate response was, oh, sometimes when you feel a bit depressed, like, that can make you feel fatigued. And I was like, no, I don't think you're listening to me. And then, to be honest, like, frustration station, I just was like, thanks very much for your time left. And then, like, that's it. Like, that's the help I've got. And that was the answer that we came to, which is frustrating, but also, at the same time, you know, it is what it is and that. That is life and we just have to get on with it.
[00:25:24] Speaker B: Yeah. But I think that, like you said, that's just, like, lack of resources for people that have been through something like that.
[00:25:34] Speaker A: Yeah. And it's really funny, I don't know how you feel about it, but, like, I feel so guilty. Like, I say I've been to the GP twice in two years since I've been out of hospital, and every time I book an appointment, I'm like, oh, my God, I'm so sorry to waste your time. Like, I know you guys associate like that immediately. I just always am on, like, the back foot and I'm like, I'm really sorry. I don't mean to take up your time. Yeah.
[00:25:57] Speaker B: Because I think if anyone's fight owning it should be you. Yeah, well, because I do think that. But to be honest, I just think because Callum says to me, why didn't you ring. And I'm like, they don't help. I don't know about you. I just think they're so unhelpful.
[00:26:07] Speaker A: Yeah.
[00:26:08] Speaker B: They just don't know what to say or what to do. And sometimes you just need, like, a bit of reassurance and they can't even do that.
[00:26:15] Speaker A: Yeah, it's true.
[00:26:17] Speaker B: But the fatigue is.
I have to remind myself a lot, like, you're not just being lazy and you do just deserve to just sit down and blah, blah.
[00:26:25] Speaker A: But, like, it is so hard also, it's annoying. Like, it's not even just, like, allowing ourselves to do it. Like, I don't want to do it. That's not in my. Like, I'm not that person that wants to sit down, like, and chill. I. I want to be doing stuff like, do you know what I mean? That's what I find frustrating.
[00:26:41] Speaker B: I'm the same.
[00:26:43] Speaker A: Let's just touch on a few others. She says, misplaced my phone. Here it is.
Joint pain. Obviously, we've kind of touched on that already in that.
[00:26:55] Speaker B: What's going on?
[00:26:56] Speaker A: We're both still suffering. I will keep you guys updated as and when I'm heading back to see my old consultants. To see, especially with my job, it's really affecting me. And there's only so much because originally the kind of plan was it's lasting inflammation. Like, lasting serious inflammation from a serious infection. It will go down. We're now two and a half years in. I'm like, if inflammation doesn't go down in two and a half years, I'm confused.
[00:27:30] Speaker B: Well, I got told that it will never go away.
[00:27:32] Speaker A: Oh, wow.
[00:27:33] Speaker B: Slay by my consultant that basically you'll just, like, learn to live with the pain, basically, and manage it when you need to.
[00:27:45] Speaker A: Wow, that's fun.
[00:27:49] Speaker B: Because when I'm so young.
[00:27:51] Speaker A: Yeah. At the moment, I am basically living on pain relief. Cool. Moving on.
So I'm just having a little look. Let's do the last one in. Hair and skin changes. I thought that's a good one to touch on and then we'll wrap up the episode. Okay.
But. So hair and skin changes.
A really interesting one.
Yeah. It's humbling for sure. After.
After sepsis. It is. And to be honest, any intensive care admission is also quite common for serious hair loss.
This usually occurs especially post sepsis, like two to three months after coming out of hospital or after an infection. Said infection.
And I don't know. I've always thought before I was poorly, I was always like, if I lost, like, if I Had to, I don't know, like, I don't know if I was really poorly and I had to have, like, lose my hair. It's just hair, it grows back. That's kind of the thing that's quite. It's quite a big common thing to be like, oh, you know, it's just hair, it grows back. I didn't realize how much of my, like, identity and confidence I held.
[00:29:11] Speaker B: It's so traumatic. And I hate when people say it's just hair. Yeah, it is just hair.
[00:29:18] Speaker A: Yeah.
[00:29:19] Speaker B: But it's not just hair because like you said, it's. It's like your personality.
[00:29:25] Speaker A: Yeah.
[00:29:26] Speaker B: And your identity and your character and you have your hair how you want because it's a form of expression.
[00:29:33] Speaker A: Yeah.
[00:29:34] Speaker B: Hate it because I think people say that to make it sound like. Because it's like superficial, right?
[00:29:41] Speaker A: Yeah.
[00:29:42] Speaker B: It's like a vanity and not vanity. Is that right? Is that. Yeah, yeah. It's not though.
[00:29:47] Speaker A: No.
[00:29:48] Speaker B: And it's traumatic when you're. If you were to cut your hair and then you didn't like it, you've made the decision to cut your hair and you don't like it. So you're like, oh, that's different. When you've not had the choice and you're losing hair.
[00:30:00] Speaker A: Yeah.
[00:30:01] Speaker B: I think really traumatic.
[00:30:02] Speaker A: And I remember, I literally remember so clearly. And I've spoken about this in my sepsis voice on the UK Sepsis Trust website. I remember so clearly. I came out of hospital, when was it? End of October, early November. And it was New Year's Eve and I was house sitting for my friend and I was the first, like, time I'd gone to see any of my friends and I got in the shower and I was brushing my hair out and like, it was a really weird feeling when I was brushing my hair. It was almost the only way I can describe it, not I've ever bleached my hair. You know when you see those awful bleach fail videos online and then brush their hair and it just comes out like string. And I remember looking at the brush and thinking, oh, my God, like, that's a lot of hair. But, like, not really thinking anything of it.
So that was like the first big clump. And then I remember like doing my hair and I turn around and I saw in the mirror there's like a, like a teeny tiny patch in comparison to what it turned to. And I literally facetimed my hairdresser straight away and I was like, what is happening? I've got a bald patch.
And at the time, obviously, she was like, oh, it can be stress, it can be health related. You've just been really poorly. Anyway, I then put it on the UK Sex Trust support group and I was like, don't know if this is common, but, like, I've been. I've had a lot of hair falling out. And then there was like. I think it was like 150 comments on the post that I put on people being like, yeah, this is so common. Like, I've had this. Like, it completely knocked my confidence. And when I tell you that I wore a beanie for six months straight, I'm very glad that it happened over Christmas because I. I think I have, like 25 hats and beanies in my cupboard from when I. I did not take a hat or beanie off for six months when it started falling out.
[00:31:44] Speaker B: Yeah.
[00:31:45] Speaker A: And that sounds so dramatic, but did.
[00:31:49] Speaker B: You get a haircut?
[00:31:50] Speaker A: Yeah, I cut all my hair off. I've never had, like, it was basically a bob.
[00:31:54] Speaker B: I cut all mine off as well.
[00:31:56] Speaker A: And I remember going to my hairdresser. I was like, oh, my God. And she was like, no offense. Like, my I love my hairdresser clothes. She's like, so straight lace. Like, she'll just say it how it is. She was like, no offense, mate. There's hardly anything there anyway, so we might as well try and make the best of a bad situation. I was like, okay, well, fair enough. So we cut it all off. And I've always been blessed with super thick hair.
So the first. For the first time, I, like, had the thinnest hair. Bald patches, short hair. And I was like, what is happening to me? And I remember I completely lost all my confidence. Like, didn't want to, like, if I got invited out for dinner, didn't want to go. Like, didn't want to get ready.
[00:32:34] Speaker B: It is just such a big thing.
[00:32:36] Speaker A: Yeah.
[00:32:36] Speaker B: Like, make it out. Like it's not. It is.
[00:32:39] Speaker A: And then eventually I think it, like, the falling out shedding process lasted like two months, probably from beginning to end. And I've got a picture. I'll put this on our Instagram. And don't ask why I did this. I was going through it, but I kept all the hair that fell out my head, I kept. Then once it, like kind of stopped falling out, I put it out. And you know, like a rug you have in your bedroom, like it's. Or like a bath mat, it covered the whole bath mat with the hair that had fallen out. And I remember being like, oh, my God. And then once it fell out.
It like. It then obviously completely stops. When I was brushing my hair, nothing was coming out at all, which was obviously a godsend. But I remember the first time that, like, obviously your hair goes through cycles and it sheds in cycles. The first time after it all came out and it grown back, that it started coming out again, I was like, oh, God, it's happening again. But obviously it doesn't happen like that. And it was just like, the natural.
[00:33:38] Speaker B: Isn't it?
[00:33:38] Speaker A: Yeah.
[00:33:39] Speaker B: It's so traumatic.
[00:33:40] Speaker A: And I'd like. It sounds so dramatic because obviously, again, we're like. I don't want to be like, oh, like, I had such a bad time of it. When people. You know, there's people with alopecia, there's people having chemotherapy that lose all their hair. And, like, I am so obviously grateful that it was for a short period of time and it was only like, you know, patches of. But it was still, like. That was a big. That was one of the biggest things for me that I found, like, in recovery that might knock my confidence massively.
[00:34:10] Speaker B: Yeah. Hair fallouts, really horrible. And like you said, mine wasn't. Mine wasn't clumps. It was just coming out a lot when I brushed it.
[00:34:17] Speaker A: Yeah.
[00:34:18] Speaker B: I wouldn't have known if I had any clumps because I just didn't even bother looking. Like, those first couple of months when I came out of hospital, I don't even really remember them, so I think pumps missing. I just did not even care to look. I was just.
[00:34:30] Speaker A: Yeah.
[00:34:31] Speaker B: What I looked like was none of my business at that point. I was just like.
[00:34:34] Speaker A: Yeah. Just getting through it.
[00:34:35] Speaker B: When I was brushing it, it was like coming out.
[00:34:38] Speaker A: It's a weird feel. It's a weird feeling as well, because it's not.
[00:34:41] Speaker B: It was. Yeah, just like, loads of it was coming out and it was.
[00:34:44] Speaker A: Obviously, it's coming out from the root as well, as nips are usually. Like, when you brush your hair, it doesn't feel like long, but it was long bits.
[00:34:52] Speaker B: Yeah. I wonder what that is.
[00:34:54] Speaker A: I don't know why. I think it's something to do with, like, your body's reaction, like distress. Yeah. Stress and shock, I think.
[00:35:01] Speaker B: Yeah.
[00:35:02] Speaker A: But I don't. Again, guys, we're not. We're not medically trained professionals, but. Yeah. And I think we've been napping for quite a long time now, like I said we would. It's been a little bit all over the place, this episode, but I'm hoping that if you're listening to this and, you know we always say this. You've just come out of hospital, you're just starting going through all of this, going through your recovery, that you find some, you know, kind of clarity and support in this space. And just because our stories are similar doesn't mean that's how it's going to be. Because I also don't want people to think that, like, oh, my God, I've just started this process and they're still feeling like this two years later.
We obviously talk about the negative parts on this podcast, but, like, we're in. It's not even. It's a different stratosphere to how we were when we first came out of hospital. Like, yeah, we are blessed and we are very lucky that we have made such a big recovery, but it's also okay to be frustrated at the things that are still not quite right.
[00:36:04] Speaker B: Yeah. And yeah, things are better. But also, like, that's like a work in progress.
[00:36:11] Speaker A: Yeah. That's a lot of time to get here and that's.
[00:36:15] Speaker B: Our stories are very similar.
[00:36:17] Speaker A: It's really weird, isn't it, that, like, I just, I can't. I always say this to, like, my family and.
[00:36:22] Speaker B: You could be right. Could you?
[00:36:24] Speaker A: No. And it's so weird that we're obviously like so similar in age. It happened two months apart.
[00:36:29] Speaker B: Yeah. It is like the same symptoms, like, but pretty much like a lot of it's so similar.
[00:36:35] Speaker A: I know it's scary but like, yeah.
[00:36:37] Speaker B: Not everyone's just going to be like that.
[00:36:39] Speaker A: Yeah. And you know, that depends.
Yeah, that can change things about. But yeah. Anyway, I'm not going to keep yapping, but we are so grateful for all your support and we know that our posting schedule is like everywhere. But like, we are trying our best to get it out. And let's be honest, this is a passion project.
[00:37:04] Speaker B: Like, yeah, we wish it was off.
[00:37:06] Speaker A: Yeah, we wish it was a full time job. That'd be so fun.
[00:37:09] Speaker B: It's not fun.
[00:37:12] Speaker A: Yeah. Stop. Imagine everyone's like three steps of survivors in Australia.
No, it's more than that. No.
But yeah, we are sending you guys lots of love. We're also working on getting some guests on the podcast, which is exciting.
So we'll keep you updated with that. And yeah, we hope you guys are all well and love you lots.
[00:37:38] Speaker B: Lots of love.
[00:37:38] Speaker A: Adios. Goodbye.
