Interview 05

Age at interview: 40

Brief Outline:

Had pneumonia and severe sepsis. Was in intensive care for 22 days, the High Dependency Unit for 10 days and just over a week on a general ward.

Background:

Occupation: housing officer. Marital status: married. Number of children: 2. Ethnic background: White British.

Everything was done for her by nurses because she was too weak to move.

So, and the bed was so high as well, the bed was like chin height to everybody. Well really not that high [laughs], but it was like really high. I just couldn't move, I couldn't even lift my leg up, I couldn't turn on my side. I just could lift my finger up and point it to the drink on the tray for someone to give me a drink. I couldn't comb my hair, I didn't even think about combing my hair or brushing my teeth. I just lay there, staring at everyone, watching, waiting for them to do something. 

She froze when she saw a nurse because it reminded her of being in ICU.

And every day I'm like, just tried to really to walk a bit further, do a little bit more, and just build up on things all the time. I do have nightmares, I have flashbacks to like the hospital and stuff, and I was at the school dropping my sons off, I know there was a girl, a woman, she's about my age it. I've seen her loads of times, but this day she came to the school. She had that uniform on that they wear in Intensive Care. I nearly dropped on the spot and she must have seen the look on my face 'cause she was staring back at me. I must have had my jaw open or something 'cause she was like, I couldn't take me eyes off that uniform. I was, "Oh that just gives me the creeps." 

And it took you back to the time when...?

Yeah, flashed me back to it, and I thought, is she one of the nurses? There was that many of them. There was just loads of nurses, they have one-to-one nursing in intensive care but you're seeing three a day. I was like, "Was she one of them?" but I know they wear that uniform throughout the hospital like the blue theatre things, but that's basically it really. 

She found it difficult to hold a pen and felt frustrated because her writing was unintelligible (she had pneumonia and sepsis).

I just couldn't speak and I was so frustrated because I couldn't speak. I couldn't even write, 'cause my sister gave me a pad and a pen, and she said try and write, I couldn't write. And I'd write things, I'd go like, I'd point to them, and then when she looked it'd just be scribble and she would be saying, "I can't understand, write it down or try and say it but try a bit." But she was really good at understanding what I was trying to communicate, my husband was like hopeless. He was like saying thinks like, "Hoarse, you're hoarse?" [laughs]. He was just hopeless, and she was like really good but I couldn't write anything.

I couldn't even really, could barely lift a pen up to write on the pad and then the writing was just, it wasn't even writing, it was just marks on the pad. I thought I was writing stuff, and I thought that my writing was okay and I was frustrated with people when they were like, I'd write something and they'd all look at each other and they were like...
 

She was hallucinating when she came round and felt terrified of the nurses (she had pneumonia and sepsis).

And the nurse said to me something about hospital, but I didn't catch the first bit that she said. I couldn't move, couldn't move at all, I felt my throat, and I knew that I had a pipe into my throat, a thick pipe. I could feel the wires, I could see all the wires in my arms and my legs. I just didn't know what had happened, I was just, I just didn't know. I just didn't have a clue. And I thought, I thought alright I've been kidnapped, and I'm in a clinic, and I'm somewhere like Dubai or somewhere like that, but I know my family will be looking for me, so I was like...I got the nurse to come over 'cause I couldn't speak 'cause I had no voice at all. Because the pipe was down my throat was pressing on my vocal cords, so I asked her for a pen and paper, [inhales] couldn't write, it was like a mad spider, I just couldn't write. I managed to write 'my name is [participant's name]', so she said, "We know." So I wrote 'diabetic' underneath so she said, "We know, we've got your notes". And I thought, how do they know all these things? I wrote, 'I am a hostage' and she looked at it and went, "Alright." She said, "You're not a hostage, your husband's coming in to see you, I've rang him." "What? How?" I said. I was like hallucinating something terrible. I was imagining the nurses were saying, "Let her husband come in and we'll kill her."

And oh awful things, and I remember looking at the nurses station where they were all sitting, and they were talking about shopping and things, I mean it was a Sunday afternoon. But I was imagining they were saying, to this nurse, "You're new, the people here, most of them are barmy and they'll ask you to pass notes to people outside but don't do that." And I was thinking, how am I gonna get out? How am I gonna? I can't move, they've got me drugged up so I can't move, I can't speak, how am I gonna get out? And they kept on saying to me, "Your husband's coming in, your husband's coming in". And I was thinking, oh yeah right, I know he's not, I know he's not.     
 

She was hallucinating and pulled out one of the tubes because she thought it was something on her face.

And then another nurse come along and they were talking, and I don't even know what they were talking about but, to me, it was as if she were saying, she was saying, "I'm gonna kill her, she'll be dead by the morning, she'll not be here when you come in any more 'cause I". Oh I just really thought she is gonna kill me, and they were looking at something in the magazine together and they were laughing, and I thought they were laughing, that I was in the magazine and they were laughing at me. And I thought that I had a cat's nose painted on and whiskers and that I was in the magazine like that and they were laughing at me and I was thinking, oh, I felt my nose and I could feel this cat's nose on the end of my nose so I was thinking, I just wanna get this off, and I remember thinking to myself why isn't anybody telling me about this cat's nose.

So I started picking at it and picking at it, and I managed to pull off what I thought was this cat's nose. When the nurse looked up she nearly had a coronary herself. I had picked off, I had a tube up my nose into it, and it was taped to the end of my nose, and I pulled it off. I'd pulled the tube straight out, pulled the tube out but pulled a drip out of my arm. Blood was going everywhere and she wasn't watching me and when she'd seen, she had got a fright and were like fussing, but she was telling me off as well at the same time. I just really thought she was gonna kill me, I just, I did, I thought she was gonna kill me. 
 

Her husband made the difficult decision of consenting to her having a new drug.

So they were just like God no, and he [the consultant] said, "The only thing we could really do now is there's a drug called Xigris, now we hadn't got it in the hospital and we've never used it before, but we can order it in, but you've got to understand that it, it is new and one of the side-effects of it could cause an internal bleed, either in the brain or internally, in which case that's really all there is to it then."

So [my husband] was like really upset and he was saying to my sister, "I don't know what to do now because they're asking me to make a life choice for her, do I just like let her like try and fight now, she's not responding." They've given me three lots of antibiotics, they kept on saying, "She's not responding." And then he said, "Before they said about the Sepsis." They said, "She's not responded to three lots of antibiotics. We think the pneumonia might be secondary, there might be something else and we're going to give her a cat scan."

So my sister and [my husband] were like, "Do that." So they come back and said, "We can't find anything else, she's showing signs of Severe Sepsis". So [my husband] was like, I could say yes to this and she could be dead, 'cause it could cause a haemorrhage or something." So [my sister] said, "You've gotta give her a chance now because she's damned if you do and damned if you don't, so you've gotta give her that chance now." So [my husband] was like really upset and couldn't cope with it all and he signed the consent form, he said, "Yeah, give her the Xigris." So that went on for a few days, but I just didn't like really do much, I mean I didn't have an internal bleed or anything but it did stop it like spreading a bit.

Her hallucinations started wearing off in HDU but she felt bored because she was unable to do anything.

I don't remember actually physically being moved off Intensive Care onto High Dependency, but I remember them doing the handover because I remember the nurses standing at the bottom of the bed going through the notes doing the handover. I remember the male nurse rubbing my feet and saying, "You'll be alright on here girl, we'll look after you." And I can remember that side of things and then he went off, and it all just went mad again. 

So there was like, long periods of being lucid and watching people and understanding what was going on and I had periods of just like everything just being madness again. But I couldn't like think to myself while I was in the madness, "I'm in madness, this isn't real", it was real to me. 

So that was still going on in the High Dependency Unit? 

Yeah, at first yeah.  

How long were you there?  

Ten days. 

Ten days, so when did it start kind of...?

It started easing off after, probably after four or five days started to ease off and I started being able to go to sleep. I mean I wasn't sleeping for long because it's just so boring in there. I couldn't move, I couldn't do a single thing, they were still washing me, I wasn't eating anything, I was on a drip for fluids. So basically they were just like washing me and like just leaving me lying on this bed. And they were doing the drugs and all things like that. So I wasn't tired and I was like, I was just watching and watching. And they would say to me of a night, "Go to sleep." But you just can't sleep. I'd sleep like for an hour and then wake up and then I'd be awake at four o'clock waiting for the clock to tick round to eight so they'd change shift and all stuff like that.
 

She talks about the physiotherapy she had - in ICU, HDU and then on a general ward - until she was strong enough to be discharged.

I had different ones [physiotherapists] all the time. They started, they were coming even when I was on Intensive Care. I can remember them bending my knees when I was on Intensive Care. And I wasn't doing anything, I think she was wasting her time. I remember her bending my knees 'cause I remember she had purple rubber gloves on and I was thinking, "That's bizarre." The purple rubber glove, they're bizarre. And then High Dependency I was more able to do things, they had me doing them. And, I didn't enjoy the physiotherapy side of things, they must have thought, oh God. When I see her coming down the ward I just thought, oh God here she comes, but after a while I got strong and I would like look forward to seeing them when they came in. Glad to see them 'cause it meant I could get up and walk and show them I could do stuff.  

Yeah. How long were you on the ward, on the general ward? 

About a week. 

About a week. And then they said you could go home? 

Yeah.
 

She felt emotional when she saw her children perform in a play because she might not have been alive to see them grow up if she hadn't survived her illness.

So like I'm physically tired, and sometimes I'm a bit emotional, not a lot, sometimes I'm emotional.  

Like the children did a church service, I can't even remember what it was for. They have that many church things, and I went to see it and I was like watching them, the littlest one was singing at the front of the church and the oldest one was sitting further behind me. And I was waving to him. And it just dawned on me, I could be dead and then who'd be here looking at this? I mean who would? I mean I know [my husband] would look after them and everything but, if I'd died what would happen? And I got it all like, in the church, and one of the Mum's that we didn't know who was sitting next to me, she just said to me, "Oh look at you all tearful." She said, "I'm like that when they're on stage." And I thought, I'm not even bothered that he's on the stage, I'm just thinking like, God if I'd have died. And sometimes when I'm watching them, I think, if I'd have died, I've said to my husband, if I'd died back in the beginning of November, we're that far down the line, the littlest one, he would probably hardly remember me now. He probably wouldn't remember what I looked like, he would not remember anything about me really. The older one might have like a few memories of me, but when they get to teenagers, the littlest one, [son's name], he would not remember me at all 'cause he's only four now. And the oldest one he'd just like have vague memories. That bothers me, it bothers me about getting sick again.
 

She learned more about her ICU experience by talking to her sister, and about her husband's feelings because he found them hard to discuss.

I think it's just something that I've got to come to terms with and I'm not emotional all the time, just sometimes. I don't really wanna be raking over it with somebody, I'd just rather, I mean, not my husband so much but my sister, we're quite close in age, and she was like, I think if willpower would have got someone through it, I think hers would have got me through. We have had post mortem after post mortem of this being in hospital. Every, I mean it's only been like recently that we've stopped talking about it. And I said to her, it was only a couple of weeks ago, "This is the first time we've seen each other and we haven't gone over everything that happened in hospital." So she said, "I know". She said, "How'd you feel?" I was like, "I'm glad, I think we need to put it to rest now."  But at first I wanted to talk about it, and I wanted her to tell me things. And only she could tell me things. And I said to her, "I feel so, like my husband was sort of like, well that was that and it's over with so let's just get on with things." And he doesn't say things, or doesn't say how he felt or anything. But she's like told me things, like how he was when I was in the hospital and how distressed he was. I mean he's not one for like crying but there were just points where it just got too much and he just had to get up and walk out. And when she told me things that are like, I know that he was emotional and that. But he had to like stay strong for the kids and everything.

Her younger son was a lot quieter than normal at school and the older one wanted to help her, keen for her to get back to normal.

How were the little boys? Your two sons, did they really know what was going on or...?

Yeah, they both knew. And because [my husband] was like visiting me in hospital so much and he was trying to work during the day, they were more or less living with his parents. And they were home of a weekend, but staying there. And then the oldest one, he would have a few like little tears, and I think he swung it a bit in school, "My Mum's in hospital and'" Well the whole school knew I was in hospital and how ill I was. It was like fame when I came out. And the little one, his teacher said to me, "You wouldn't know anything was wrong, he was just so sensible." She said, "He was quieter and he wasn't as smiley, but he was just really good." And he always wanted to visit me in hospital but the older one was more, "I want my Mum to come home but I want her to be back to how she was." He couldn't really deal with me being ill and he was like, but I would come up the stairs and leave the walking stick up the top of the stairs so I'd know where it was when I'd come to getting it. Well he would come upstairs and move it to like lean on the bed, so I'd go to get out of bed and fall over it. So he was always like trying to look after me, was drying my back and drying my legs when I got out the shower and stuff 'cause I couldn't really, so he was like trying to be helpful but it did upset him.
 

She wants to go back to work but is worried she won't be able to cope with the pace, the stress and the physical demands of her job.

I think they will want me to, I think they'll be wanting, trying to getting me to do something but, I know they're gonna be quite concerned about coming out [to see me at home] because the last time anyone seen me from work I was in Intensive Care. So although I've like communicated with them on the phone and I've written to different people, they're gonna be like not know what to really expect. Maybe when they see me they're gonna be thinking, there's nothing wrong with her, she can go back now. I think maybe a coupla days might -  

Yeah, is there anything you could do at home or it's not that kind of work?  

No. It's mainly visiting people and being out and stuff so. It's a lot of, it's a lot of getting round, I work as a Housing Officer for a Housing Trust. And so it's a lot of like going to people's houses, or go in flats and up and down the stairs and stuff. So you're out, in out of your car, like twenty visits a day. I just don't think I could do that right now.  

Sounds like quite a lot?

It's quite physical and it's about being on the ball as well 'cause you're dealing with people who, you're not seeing anyone for anything happy or good or for them to say this is great. They all want to moan about something. So they all want you to sort something out, so it's quite stressful in that way, but I wanna be back, I just don't wanna rush back.
 

She advises people to talk about their experiences, and relatives to tell them what happened because the more they know, the easier it is to deal with.

I would just say, just talk about it as much as you can because the more you talk about it, the more you straighten things out in your own mind. Don't bottle up and dwell on things. I've been over certain points of things and what I think people said to me which my sister's said, "I'd kill them if they'd have said that, no way." But I've been over and over hundreds of times some points of when I was ill, with her. So I think people should really talk it over, every, even to the point where we've just exhausted it now. Absolutely talked it to death. So I think you need to get it out, just don't try and bottle it up because it's, you think things, they play on your mind, and they alter as well in your mind, the knowledge, they don't remember them exactly how they were, you'd have like your own slant on them.  

That's really, really helpful, is there anything you would want to say to family members?  

Really it's just like talking through things, go and tell the people how things really were. I mean just, exactly as they were. 

Just really listen and tell them things, tell them what was going on while they were intensive care because really you don't have a very good perspective of it. When you're the patient you don't really, you don't comprehend things exactly as they are. Everything's very strange so you need your head putting straight on things and I felt as well like I was moved around in intensive care, that I was all here, there and everywhere. I said that to my sister and she said, "You weren't, you were in the same place." I always felt like I was, that they were pushing you round in the bed. She said, "You were never moved, you were always in bed four." So I think families should tell the people really the truth of what's happened and just, the more information, the easier things are to deal with.