Interview 06

Age at interview: 35

Brief Outline:

Was admitted to intensive care in 2003 because of pneumonia, and developed septicaemia. Spent 3 weeks in ICU, 36 hours in a High Dependency Unit and 5 weeks on a general ward.

Background:

Occupation: TV producer, on maternity leave at time of interview. Marital status: married. Number of children: 2. Ethnic background: White British.

Her family were all at the hospital when they found out she was critically ill, and she later learnt that she had pneumonia and septicaemia.

They put me to sleep for nine days. Through that night I deteriorated very rapidly. I developed septicaemia and it was a very close call for a number of days. My parents were in New Zealand and they were called back. My sister came up. My parents-in-law had to come down to look after our daughter who was sixteen months old at the time and everybody thought I was going to die.

And it remained that way for I think probably a good sort of six or seven days while they threw every single antibiotic they had in the cupboard at me. And desperately tried to work out what it was that was wrong with me because obviously when you go in and present like that, they don't know what it is specifically that you've got wrong with you. And in the end they worked out that it was a fairly common strain of pneumonia that I just had a very bad severe reaction to. But I know none of, you know I knew none of all this obviously. And I was just sort of out for the count. 

She felt disorientated and lay awake all night because of the medications and her own fears.

The strongest kind of impression I had having been woken up was that I then couldn't go back to sleep. And part of that was I couldn't go back to sleep because you know, obviously I was just kind of pumped full of drugs and totally disorientated. And I had no idea whether it was morning or night or, you know, it was like kind of an extreme form of jetlag. But also I was utterly terrified to go back to sleep because I understood enough that there was a problem with my breathing. And I was convinced if I let myself fall asleep I'd stop breathing or I'd choke on all this gunk in my throat. And that went on for days. And so I'd have a kind of day pattern of people visiting me. And then they'd all go away and it would be night time and I would just stare at the clock and stare at the machines. And not, you know, not be able to sleep at all. And after a few days of that they started to give me some sleeping pills which didn't really work either. You kind of take this medication and expect to kind of just conk out within twenty minutes and it didn't really work like that.

She communicated by nodding at letters in the alphabet but found this slow and frustrating.

So when you have a tracheostomy you can't talk. So not only could I not move and not do anything for myself and couldn't sleep, but I couldn't actually communicate with anybody either other than kind of. You know I would just carry on talking and hope that somebody would be able to, you know, I would mouth the words and hope that somebody would be able to understand what I was saying which my husband became very good at. Other members of my family were just quite frustrated by it understandably. And I would get frustrated. And just repeat myself endlessly. It was kind of like the, sort of the silent version of when you go into a foreign country and just kind of talk louder if somebody doesn't understand you. I would just repeat myself and repeat myself. And we tried to do sort of, my husband sort of brought in a kind of alphabet and we tried to do kind of pointing at the alphabet and try and spell out words which, when you describe it now, sounds incredibly easy, you know. He would kind of point at a letter and I would either nod or shake my head or blink my eyes or something but you never really got much beyond a kind of four-letter word and then it would all just become too much effort or we'd lose where we'd got to. So that was incredibly kind of frightening and frustrating. 

She craved fruit juice and was gradually allowed drinks and, later, on a ward, soft foods.

Another feature of intensive care was being incredibly thirsty and obviously I was on a drip being fed and kind of 'fed and watered' as it were. But I was unable to take anything through my mouth. And I remember waking up and being obsessed with fruit juice for some reason. I mean not kind of water or tea or coffee or anything like that. I just desperately wanted a glass of fruit juice and I wasn't allowed any. I wasn't allowed any water even. The best that you were allowed was sort of a pink sponge on the end of a stick that was wet that you could sort of suck on. And that was all because they were worried about my ability to swallow because obviously I had this big tube in my throat. And so I worked, slowly the speech and language therapists came and worked with me and we had to do all these swallow tests with blue water and things like that. And gradually it was kind of like a little competition because later on I was on the ward, the lady next to me kept failing her whatever it was, blue water test and wasn't allowed a cup of tea and you know. If you passed it you were allowed a cup of tea or a glass of water or, further down the line, a yoghurt or some Weetabix. So that again was you know, something that you just had to kind of relearn how to do in very, very small increments. 

She recalled talking to an outreach nurse about transferring to a ward and valued her support during this transition.

And then on the sort of second morning of being in step down I kind of had what they call, I can't remember the phrase now, what they call, outreach nurses, come and talk to me who are the nurses who sort of link between intensive care and the normal wards. And she came and talked to me about possibly being moved on to a ward that day. And obviously that was all moving in the right direction and I desperately wanted that. But it was also a very scary prospect as well because there is, there's a security blanket you have in intensive care with having people there all the time because on the ward you don't have a nurse there all the time. And it was quite like passing a test. So she came sort of first thing in the morning at about eight and then I had to wait for the consultant to come round with his kind of army of doctors and students. And they all kind of huddled round my bed and kind of looked very serious at me and kind of looked at my notes and then sort of nodded at me and then went away, which somehow meant I was allowed to go down to the ward.

Yes. What was particularly good with the outreach? 

Well I just, I think they were very good at handholding almost, a they came and they were very efficient. There was a team of three of them and they started to come and see you in step down and then they came to see you every day until I had my trache out, which I think was about two weeks. So they would just monitor you and kind of, but they were very direct at talking to me and I felt, whereas the doctors generally didn't talk directly to me. They kind of talked to each other and would kind of shuffle on, whereas the nurses were very good at talking directly to me. And I think, and you could just see them working with other people as well. They were very efficient and it was sort of, they were there for when they needed to be there and then they weren't. 
 

She was anxious about moving to a general ward because she was too weak to do anything for herself and had no energy to press the buzzer.

So then I got moved down to the ward which was very scary because, as I say, when I was in intensive care I had somebody there all the time. And it might be that they wandered off for sort of twenty minutes and didn't wipe my mouth as often as I might've needed it but basically there was somebody there all the time. Whereas on the ward there wasn't. And I was very scared because I couldn't do anything to get anybody's attention. 

So you know I arrived and the sister, who was fantastic, kind of came and welcomed me and sort of set me all up and said, 'This is your nurse and I'll be back tomorrow morning and this is how your bed works and here's the buzzer that you need to press if you need anybody.' And that was no good to me because my hands weren't strong enough to press it. And my arm wasn't strong enough to reach for it. So I felt really scared. It was like being kind of bound and gagged.

I mean that was the main feature of when I was back on the normal ward. I was no longer seriously ill but I was seriously physically depleted, for want of a better way of putting it, by the experience. And it was like having a window into either being a small baby or being a very old person. And I was faced with challenges that, as an active, you know, working mother in their thirties you'd never imagine that you'd have to be faced with so, you know, not being able to walk, not being able to feed yourself. You know not being able to go to the toilet by which I mean, you know, not being able to stand up and physically kind of walk the sort of the five paces from the end of my bed to where the toilet was. Not being able to wash.
 

She had to rebuild her strength to do normal daily activities and missed her new baby.

When I was still in hospital I was still so preoccupied with those kind of things that you know at the time were incredibly important because they were just the basic fundamentals of how I was going to get strong enough to get out of the hospital. But were actually so far removed from, you know, what you needed to be able to do in everyday life to get on with everyday life. You know just all the little choices that we, you know, just to get up and get dressed and get ready to go out to work in the morning. You know, get out of bed, have a shower, get yourself dressed, make yourself a cup of coffee and a bowl of cereal. Put your coat on. None of that stuff was within, you know, the realms of possibility for weeks and weeks while I was still in hospital. You know I was still working on the real kind of building blocks of being able to kind of sit up in bed in the first place, let alone get out of it and kind of get myself into a shower. It was a really, really long journey. 

And the other thing that was agonising was the fact that I wasn't able to see my baby. And was missing, you know when you look back on it two months is, you know, not a lifetime but it was a lifetime then. And I missed her first steps because I was still stuck in hospital and when I came out of hospital I was too weak to look after her. So we had to have full-time live in help for another four or five months until I was strong enough to be able to lift my own child and feed my own child and push my own child in a buggy, which was the kind of the lasting agony and the lasting trauma. 

She now sees her ICU experience as a part of her life and a part of who she is.

But you know, I realise that that's not actually the way that you can deal with these things and that actually, you know, that it was a major, major trauma. And that's not going to go away. And actually from, you know, from this perspective I don't want it to go away. I mean it was an awful, awful thing that happened but that's kind of part of life's rich pattern as it were and I'm very lucky that I came through it. And you know, it colours, you know it sort of coloured the last two years of my life and it will continue to kind of colour the way I lead my life from here on. But I've kind of, I'm happier with incorporating it as an experience into who I am than I was at the time. I mean at the time it was a real kind of, it was another box to tick off to try and get through everything. In the way that being able to tick off walking down the corridor or swallowing a cup of tea without choking, being able to have a shower by yourself were kind of boxes to tick off to the road to getting better.

She was extremely weak when she left hospital but was gradually able to look after her daughter and has since had another baby.

I mean one of the real positive things is, this time two years ago, I was so sick I almost died and the consequence of that was that I was so weak I couldn't move and do anything for myself. And it's been a very long hard struggle but two years on I've got, you know, I'm able to look after my three-year-old and I've got a three-month-old baby. And you know at the time I thought I was never going to kind of. You know I was seriously having to kind of examine my quality of life and everything that I kind of thought and took for granted in the course of everyday life. And it is a really, really long, hard struggle back. But seemingly the body, you know, at our age in our kind of mid-thirties, I'm sure that it's a slightly different situation if you're a lot older, but certainly in your mid-thirties the body kind of goes to pot very quickly but you can also put it back again. But obviously I didn't know that at the time and I had a physio working on encouraging me to be able to twitch a finger or twitch a thumb. And you know the thought of being able to lift my arm, let alone kind of, I mean sitting up or kind of standing up were weeks down the line. But gradually it came back.
 

She felt that the counselling she received didn't deal specifically with some of her ICU experiences, such as fear and disorientation.

So I saw a counsellor privately and then I was also given a couple of sessions through my GP. But I could really have done with a bit more support from professionals who knew. I mean none of those people knew about intensive care. And I think a bit more support from people who have actually worked with people who've been through the intensive care experience would have been really helpful at the time. 

They'd [counsellors] never really come across anybody like me or if they had maybe one or two other cases so they didn't really know what to look for. And you know obviously there are sort of common threads to sort of post-traumatic stress disorder and things like that they could kind of look out for but in terms of. I still to this day don't really feel that I've actually been able to speak to anyone who understands about the memories that I have of intensive care and what a sort of terrifying and disorienting experience that was. And you know it haunted me for a long time. It kind of doesn't haunt me as much as it did.
 

She appreciated talking to a nurse about her psychological recovery but would have liked more on-going support while she was at home.

In terms of the doctors, I kind of went back and had a sort of check up with the consultant about six weeks after I came out and then about another six weeks after that and then they kind of signed me off. So I mean certainly in my case it was a very serious illness but it was kind of dealt with and cured I guess relatively quickly, but then what I was doing was coping with the physical consequences of having been that sick. And it was that really took the time to kind of get over if you know what I mean. 

I mean in lots of ways it's sort of, I don't know it's another kind of element that the hospital needs to think about. And I know medical resources are very stretched and actually intensive care medicine is there to keep you alive. And kind of how you heal psychologically afterwards is not their main concern. I went back - I forgot about this - about two months afterwards and spoke to, what they did offer was, when I probed a bit more, I think it actually came through a conversation my sister had had with one of the senior nurses. They did offer for me to go back and just chat to one of the, I think she was called a consultant nurse about what happened. Which I found was very, I mean I was very lucky in that I had close relatives who were doctors, who were able to explain to me what had happened. They'd obviously talked with the doctors all the way through and understood a lot more than most of us would have understood. 

But I found it very helpful to go back and just talk through a little bit of what had happened to me. And what they had done and just a little bit of how people recover. And you know I had a session with her, you know an hour long session with her and she said that I could go back but I was very conscious that she was a nurse whose main business was keeping people alive rather than anything else. And that was very sort of ad hoc. I mean in some ways what they need is, I mean the outreach nurses seem very, very good at kind of helping you make that transition from intensive care to the general ward. And they almost need to look at that model and find somebody to help you make that transition back out into the real world again.
 

Her GP advised her to return to work only if she could look after herself and her daughter, and cope with normal household tasks.

And all the time I'd been working part-time before I got ill and I was signed off sick for well, until Christmas because it took me that long to kind of get strong enough. But my GP was very supportive in saying, "You know you're not well enough to go back to work until you're well enough to kind of manage at home. You know you're not getting well enough to go back to work and not be able to look after your daughter." So he was really supportive in kind of prioritising that first. And then by the time Christmas came I actually decided, you know, I probably would have been strong enough to go back to work and work was very supportive about saying you know you can come back a day a week and we'll build it up from there but there was a redundancy offer on the table. And I actually decided that I needed just to kind of spend some time with my daughter and spend a good chunk of time being well with her rather than being ill with her. So I didn't go back.