Helen Y

Age at interview: 55
Brief Outline:

Helen was 48 when she sustained her burn injury. She was burnt after she had an epileptic fit whilst pouring boiling water into a hot water bottle.

Background:

Helen is a service designer working in digital media. She lives with her partner, who she has two children with, aged 17 and 20. Her ethnicity is White British.

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Helen was burnt 7 years before whilst preparing hot water bottles for her 2 children. As Helen was pouring boiling water from the kettle into the hot water bottles, she began to have an epileptic loss of awareness, fell over and accidentally poured boiling water over herself. Her children heard a ‘thud’ and rang an ambulance. The next thing Helen remembers is waking up in the bath being showered with cold water and surrounded by paramedics, her husband, and children.

Helen was taken by ambulance to her local hospital, before being transferred to a specialist burns unit around an hour away. When she arrived, Helen was taken into a private room where her burns were assessed by a burns consultant. At first Helen was told that she would not need surgery. However, as her burns did not heal in the next few hours as well as the burns consultant had hoped, she was then told she would need surgery after all. It was a “huge shock” for Helen when she was told she would require surgery.

An allograft procedure was performed on Helen, where skin from a deceased organ donor was grafted over her burn as a temporary measure until Helen’s own skin could be taken and used in an autograft procedure. After the autograft, Helen said that the area of her skin that had been taken was more painful than the burns themselves. She remembers feeling “guilty” for waking up other patients on the ward after screaming during dressing changes.

Whilst Helen was recovering, she found small acts of thoughtfulness by her friends to be incredibly important. She remembers receiving a card in the post from a friend she had not seen in a while, and this made her realise that others were thinking of her.

Helen joined a support group run by the hospital’s burns unit for people affected by burn injuries. She said meeting other people with similar experiences “made a huge difference”. It helped Helen to speak with other people who were “not so affected” by their burns, as it gave her hope of her life returning to some form of normality eventually.

Helen Y had an epileptic fit whilst she was pouring boiling water for a hot water bottle. Her memory about the accident is fragmented.

Helen Y had an epileptic fit whilst she was pouring boiling water for a hot water bottle. Her memory about the accident is fragmented.

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This was seven years ago, and my partner was out on a night out. I was putting the kids to bed, I was making them hot water bottles, it was February, I think, 2014. I was making hot water bottles, had the boiled kettle in my hand and was just filling up one of the hot water bottles when I had one of my epilepsy auras, which is a kind of warning that a seizure is about to happen. What I should have done is put the kettle on the side and moved it away, but I didn’t, I put the kettle on the side and must have left my hand there because, well, the next thing I remember was being in the bath with about four paramedics in there and totally and my partner and the two children and being showered with cold water and immersed in cold water. So, what apparently had happened is that I had fallen over with my seizure, poured boiling water all over my body. The children had heard a thump, I don’t think I’d screamed or anything, but they’d heard a big crash, so they came down to find me on the floor with boiling water all over me.

So, the next thing you remember, after having the aura to say it was coming on, that you were just in the bathroom. So, some time would have passed, I assume then?

I suppose so. So, that must have been a pretty long one. Yeah, generally, they’re only about five minutes, maybe 10 minutes maximum but that must have been like half an hour, yeah.

So, what do you remember happening from waking up or from regaining awareness?

Yeah, complete shock. ‘What on earth am I don’t naked with all these people around me?’ was my very first thought. …Then it suddenly started dawning on me ‘Oh yes, I had that aura, didn’t I?’ And so those pieces of the jigsaw started to come together.

Helen Y said she was in “intense pain” when she stood up for the first time after being burnt.

Helen Y said she was in “intense pain” when she stood up for the first time after being burnt.

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The intense scream that I remember, it was one morning, was related to... So, I think while I was lying in bed I was dosed up with painkillers, all sorts of things, tablets, stuff going in, you know, in the arm, a constant supply of something, would that have been in my nose? – I don’t know – something. So, not too much pain. It was the first time I stood up that I screamed, screamed the loudest I’d ever screamed.

And I was on a ward, and I remember other people on that burn’s ward as well, being in a far worse condition than I was and, you know, almost thinking to myself “I’m quite lucky really.” But being in intense pain, I do remember the pain at that point, it was absolutely hard, I remember screaming the loudest I’ve ever screamed and feeling guilty that I’d just woken up all these other patients on the ward. But that was happening quite a lot there I think, because there is a lot of pain involved.

Helen Y had tissue expansion therapy about two years after having a skin graft.

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Helen Y had tissue expansion therapy about two years after having a skin graft.

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This was tissue expansion therapy, offered to me around 2 years after the injuries happened. The surgeon placed little plastic balloons under the healthy skin next to my grafts, and then I saw him regularly – maybe once a week – when he injected each of the balloons with more fluid so they expanded and effectively made more live, healthy skin next to the skin grafts. He explained it like having a baby grow in your tummy – your skin adjusts to the baby growing and is then left a bit saggy after the baby is born. When this healthy skin was stretched as far as it could go – over the course of 6 months or so – the surgeon performed a procedure in which he removed the balloons and pulled this extra saggy healthy skin over the damaged areas, replacing the grafts. And so, my skin wasn’t saggy after this, it was more moveable – it was fantastic – incredible the amount of extra movement I gained from that.

Helen Y was helped to come to terms with wearing a pressure garment after speaking to someone else who wore one.

Helen Y was helped to come to terms with wearing a pressure garment after speaking to someone else who wore one.

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Yeah, because I do remember the pressure vest being a hideous thing for me and I remember being in floods of tears when they were fitting me with it and thinking ‘Do I really have to wear this for a year?’ or whatever they told me, ‘I can’t believe it this is just affecting the next year of my life...' And so, when I was travelling on public transport, even though you couldn’t see my burn injuries, I thought people could see that pressure vest somehow and I felt different.

I’ll tell you the story of one person I met, I think it was at the very first burns group I attended, when I was wearing this pressure vest and I was still thinking 'How on earth am I going to live every day in this bloody thing?'. And there was a guy there who’d probably been burnt two years before, and because we were going back the same way – he was a lot younger than me – but because we were going back the same way, we’d get on the same train. Aand I was talking to him about this pressure vest and, you know, how on earth am I going to live with it, and he told me this story which still makes me smile today, which he said “Well, you do kind of forget about it, it becomes part of you, you kind of forget about it". He said, “About nine months after I’d been wearing mine…” and his was on his leg, he said “I met my now wife. And, you know, we were getting undressed, and she said, “What on earth is that on your leg?” and I’d completely forgotten that I had it there”. So, that made me think 'Perhaps I will forget this thing', because at the time it was just in my head 100% of the time, the minute I woke up until the minute I went to bed, 'I cannot bear this thing on me'. And his, the conversation with him made me think 'Oh, maybe I will eventually forget it’s there, like he did'. So, it was meeting people like that at the burns group, who’d been through it all, who weren’t particularly suffering now but who had suffered in the past, that really helped me.

I wouldn’t say it wasn’t a relief to have it off eventually, but I completely lived my life not having it in my head 100% of the time, that I could do things normally, I could work, I could live my life without constantly thinking about it.

Helen Y said that the kindness of the burns staff helped her cope better with the pain.

Helen Y said that the kindness of the burns staff helped her cope better with the pain.

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They were very painful I think but the clinical staff – as I’ve said before – were so lovely, really, really lovely. They would deal with, they’re talking to me to keep me, keep my mind occupied elsewhere, dosing me up with painkillers, once again through multiple routes. And just the, you know, the kindness of clinical staff can really have an effect on your pain levels, I think. If they weren’t showing me any emotion at all it would have hurt a lot more, I think. But they were showing me such kindness that, yeah, that definitely helped with the pain.

You valued their support in helping with your pain management, I guess?

Definitely, definitely. And also, in between the changes I was lying in the bed and, I think I could call any time the pain was reaching a thing and they would come in and either turn up something. Once again, I’ve not quite, don’t quite remember the details but they were able to regulate my pain of my burn injuries.

Helen Y was taken to a local hospital after she burnt herself during an epileptic seizure.

Helen Y was taken to a local hospital after she burnt herself during an epileptic seizure.

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Interviewer: Do you remember the trip to hospital at all?

Yeah, I do, very much so actually. Generally, my memory after a seizure is pretty rubbish. I have conversations where apparently, I’m talking normally, so I think I am aware when I’m having the conversations but afterwards, I have no memory of those sensible conversations. So, my memory is, you know, buggered for about half an hour afterwards. But that particular journey – I don’t know how long after the seizure it was – I do remember. I was taken – once again, can I say they were really lovely to me – and the first thing they did was… So, I went in the van ambulance to the very nearest hospital, which is probably only a five minute drive away. They checked me there and then they sent me off to a hospital, which has a specialist burns unit, so that same evening. So, I was probably, from the seizure to being in the burns unit of the specialist hospital probably took maybe… 45 minutes, an hour, something like that… Maybe not that long. I don’t know. Between 40 minutes and an hour, I would say.

Small acts of thoughtfulness by friends were important to Helen Y when she was recovering.

Small acts of thoughtfulness by friends were important to Helen Y when she was recovering.

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And there was one particular, and then friends, equally, you know, calling and, once again, didn’t always want to talk to them, but it was lovely to think of them supporting me. And even remote friends. So, I know that, for example, not a close friend at all, but the mother of one of my son’s friends, brought round a shepherd’s pie, which was lovely. And another friend that I haven’t seen for, maybe, I haven’t seen for maybe five years, sent me a card saying, “Heard what’s happened to you, really sorry to hear it, sending my love.” And that was really lovely, thinking “Gosh, all these people I haven’t seen or heard from for ages are thinking about me.” And that made a big, big difference. And it’s, that’s another way that it’s changed me now, I think. Because I know how much that meant to me and so every time, I hear about somebody I know, even somebody I know I haven’t spoken to for seven years, if something awful has happened to them, like they’ve lost a partner or, they’ve had an accident, I always get in touch in some way. Usually not by ringing them, to feel that they have to speak to me, but via digital media or via a card or via something, because I know how much that meant to me – huge amount.

After Helen Y was burnt, she felt uncomfortable with her long-term partner seeing her body. She says this has gradually improved with time.

After Helen Y was burnt, she felt uncomfortable with her long-term partner seeing her body. She says this has gradually improved with time.

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Definitely, I felt my body looked absolutely ugly and disgusting and really didn’t want him seeing it and having to wear a pressure vest in, did I wear it in bed, or did I take it off at night-time? Either way, with a pressure vest or without, I felt I was a weird, ugly bag of stuff, yeah, and I really didn’t want him seeing that.

And that probably made me close up a bit to him&hellpip; But it did- Yeah, it did gradually improve as my… I can’t put any date on it, but gradually, gradually, and as I say, now I feel completely comfortable, you know, both naked with him and with a low shirt with other people, feel completely comfortable in that skin now.

Helen Y feels fortunate that her partner was able to financially support the family whilst she was recovering.

Helen Y feels fortunate that her partner was able to financially support the family whilst she was recovering.

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Yeah, it probably was a slight worry, not as much as it would be for other people because I’ve got a partner who also works. But it was a slight worry, it was a slight worry in so far as how long is this going to last? You know, can we last forever with me just doing a few hours every week, or whatever?

Was it something that you think you were worried about at the beginning when perhaps you underestimated the severity and the longevity of a burn?

Yeah, exactly. When I realised I was going to be in hospital for three weeks that was when it hit me, oh this isn’t just like, this isn’t something that’s going to be over very quickly. So, yes, I did start to worry then about the financial impacts of it all.

Though she recognises that feeling positive about a burn may seem “crazy” to others, Helen Y says she is glad the burn happened now.

Though she recognises that feeling positive about a burn may seem “crazy” to others, Helen Y says she is glad the burn happened now.

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But definitely in the last couple of years, I would say, I’ve felt quite positive about the whole experience and, amazingly, you’re not, you know, others who’ve just had a burn think ‘She’s crazy’. I’ve felt I’m almost glad that I had them.

I’m glad it happened, which sounds crazy, but I am. And, you know, as well as the people I’ve met through it, it’s also, yeah, the seeing that I can get through stuff, so, like you say, being resilient, but also all the support that came pouring in from friends and family. Yeah, from friends I hadn’t seen for ages, you know, a letter came through the door or whatever. So, yeah, all of those things have made me glad it’s happened.

Other than just to reiterate that I am really glad it’s happened now because it has opened up so many areas of my mind, it’s introduced me to people that I wouldn’t have met otherwise and I don’t care a bit about the scars anymore.

Helen Y said she “really valued” it when doctors were “clear” and “plain speaking”.

Helen Y said she “really valued” it when doctors were “clear” and “plain speaking”.

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And I do remember it being a shock that he told me I needed surgery, and asking him lots of questions, which he was brilliant at answering, I’ve always thought-, and I think he does a lot of surgery on children, he’s really good at explaining in simple terms what he’s going to do, what the results might be and all of that, yeah.

In fact, an accident I had a few weeks ago, I was just bamboozled at what on earth they were telling me, didn’t really understand it. So, yes, I really value clear, yeah, plain speaking and answering questions really well and honestly. Yeah, really, really value that.

The whole team at that hospital, maybe led by him, have been always absolutely brilliant at explaining what on earth is going on in very simple language. And, you know, even using kind of sketches and things if a question that I ask can’t be answered in words to show me even more clearly what’s going to happen. So, no, really, really value that.

Helen Y attended a local support group organised by a clinical psychologist.

Helen Y attended a local support group organised by a clinical psychologist.

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The support group from the hospital was, is the one that I’m still involved with now, actually. They were fantastic. And I think I was told about that when I left the hospital, the leader of the group might even have come up to see me while I was staying there. I think, once again, my memory of that is hazy. I just remember the very first time I attended one of those groups. I don’t remember much about leading up to it. But I do know that they told me at the hospital about it, and I went to the first one after that. And they meet once a month, is it? Or once every couple of months anyway. But the leader of that group is always available for help anyway and it made a huge difference meeting other people with burn injuries.

The big help of there was, 1) meeting people who’d had the burns a lot earlier and me realising look, it feels like they’re having quite a normal life, I can have a normal life as well, can’t I? It was talking about it in a group and being able to talk about issues that other people say “Yeah, I feel like that, I feel like that” so you don’t feel you’re alone. Being able to laugh about it together. And yeah, the leader of that group was great at bringing people together and starting conversations and contacting me afterwards.