Could you sleep okay while you were there [in ICU]?

Well not really, but they used to give me tablets to put me to sleep, because I used to tell them I can’t sleep. They used to give me tablets to put me to sleep so, yeah and then as I got better I said I don’t need the tablets. Now I’m a very, before I went in to hospital I was a very bad sleeper. I’d have maybe four, three hours a night, that’s it. I was one of them people who couldn’t sleep, what they called, insomniac. Anyway they got into the hospital room, I started sleeping, proper, which I couldn’t before. Now I’m out I can, I used to stay up till two or three oclock watching telly, now it’s about eleven oclock, ten oclock I’m nodding off.

Never, never in all my life have I been like that, so I can sleep better now but I think that’s due to what me body’s been through. And I can’t do what I did before, I think I can but obviously I can’t, it’s making, me body’s telling me no you can’t, you’re tired. And I’m having a damn goods night’s sleep all the time now, which I never could. All me life I’ve never been able to sleep proper, no.

When I moved out of Intensive Care, the first day that I spent on the Ear, Nose and Throat ward, High Dependency ward, there was somebody there that I could hear crying in their bed and being talked to by a doctor, telling her that, she kept saying that she had a brain injury and that, she said, “I know I’ve been in an accident and I’ve lost half my brain.

And not long after I was hearing all this, there was another young woman who had a cone-shaped head, and it was cone-shaped with these white bandages curled right up, completely cone-shaped, who had little glasses and shuffled. And I just, from that point onwards that was my nightmare. My nightmare consisted of brain-injured people, where this cone would lift off like a hat and there would be half a brain. So it had everything to do with what this girl was screaming about. It wasn’t the same person. I know that, absolutely. This girl was screaming about and saying that she had half a brain, and shed been in an accident. And this girl with the cone, that, now I happen to know that she actually, this girl who thought that she had half a brain, shed had her tonsils out, and this was the pure effect of coming out of the anaesthesia. Yes. Because I got so upset and worried about her. And the girl with the cone head, well, it was made more so because she in actual fact suffered from Down syndrome, which made, she already had a shape that sort of was familiar with that. But she had a problem with her ear and had had some surgery on her ear. But they had somehow or other bundled her hair so that her hair came out of the top of this cone of bandages. But even after I knew that, that image, that was my nightmare;

Did you have nightmares when you came home as well;

That was when, that was when I came home;

For how long? Did they go away gradually;

I would say that that lasted three weeks, before I got a proper, what I call a settled night’s sleep, where I slept through without waking up, without waking up because of a dream, because of a nightmare;

Patient’But it was weird, it was a mixed blessing really because I was desperate to get out of hospital because I’d never been ill. I had no idea how weak I would feel because I was in this cosseted environment where I had one to one nursing, which was fabulous you know and I was desperate to get out of the hospital wasn’t I? But when I came home, I sort of came home with a bang didn’t I. I was really, really nervy. I’ve got two cats, I was terrified of the cats you know. They said I had to be careful with my immune system. I just, I really was really nervy. And my daughter still says that I was really quite, I was really angry, I didn’t, you know I wasn’t sort of blaming anyone but I don’t know who I wanted to be angry at. But I was angry [laughs] at everyone wasn’t I? I was really, really difficult to live with, really difficult.

Partner’You were worried, she was worried about anything, you know any germs in the air or catching any, like I say, hairs off the cat. You know she wanted to make sure everything was, well nothing was…

Patient’I think it was because once I woke up in intensive care and realised the seriousness of it and the doctors and nurses on intensive care were really vigilant about washing their hands, you know all the sort of clinical procedures you know. When I came home and they said my immune system was low, I was really panicky.

The emotional side was very difficult to come to terms with. They are different. A physical thing you can stop doing what hurts you but how do you stop an emotional thing? You don’t take a deep breath and sniff and then go on to the next thing. It doesn’t happen. It’s overwhelming. The tears start flowing. You can cry uncontrollably and there was no reason for it. It’s difficult to come to terms with, very difficult. I can, since having had this complaint, I can relate to being to the ladies equivalent of PMT. It’s horrendous, it really is.

To come to terms with why you would suddenly want to cry and no stopping you. You don’t know when it’s going to start. You don’t know when it’s going to stop. You don’t know how long it’s going to go on for. I found this one of the worst things to come to terms with. Again, like I say, it’s years since I’ve cried before. It’s a natural thing that made me cry. This was unnatural.

My second visit I think with [the consultant], I asked him about counselling and he said that he didn’t believe in it. He thought it was a retrograde step. People were better if they didn’t go for counselling and just let their emotions out. I think he was basing it on my emotions and the fact that if I cried and let this out of my system I would not need counselling. It was because I was holding it within and not letting forth the tears that I was doing myself no favours, which is why I’m sure he felt that counselling wasn’t necessary. He was telling me to cry and get it out of my system. I was not doing this.

Patient’I am finding I’m still very, you know seven months on now, I’m still very tired. And I find I get really quite angry because I think it’s so frustrating because you know you’ve over come all this with the help of everybody and then you’re sort of, if I have a day where I go out and do normal things I then really have to got to rest. And then theres a thing that I keep saying don’t I, you feel like you’ve got to make every second count, every second, and then your body is saying that you’ve got to rest so you’ve been resting for months and months and months and then the days, you resent it and you get quite angry and take it, I mean I was saying to you [partner] wasn’t I for some reason I was really angry with [my partner], really angry [laughs].

And my daughter commented she said, and even this was only a couple of days ago so it’s seven months on, she said “You seem to be really angry, theres like this residual anger about something and what is it?” And I really don’t know. And it’s not all the time but I do get quite angry.

I used to read the paper, and I mean you go through it and you go through the ‘death and memorial’, and I’d just be starting to cry because just so many young people dying for no reason whatsoever, you know. They’ve got all their life ahead of them. And I’ve questioned myself and said, “Well, why, why save me and take them? Why not just take me? I’ve had a good life so far. Let somebody else carry on with theirs.” You know, I always used to ask this question. I’d ask it to [my partner]. “Well, maybe theres a reason for you being here, you know. There is something, there is a reason why you’ve been given a second chance.” Which I have.

How did you feel emotionally during the whole time?

Very emotional, very, even now I’m quite emotional about it. Just to realise how close I’d come to dying really. And also it was all the support and help of family. And the whole village as a community were right behind [my partner], 100 per cent. Everybody was always asking. Even people today, I’ve been up to [city] airport and saw a couple of local people. They said, “Crikey, we haven’t seen you since you’ve been bad. How are you doing? How are you feeling?” It’s still going on now. That’s absolutely fantastic, I couldn’t believe it. Absolutely fantastic. It’s just, it’s just brilliant, absolutely brilliant, overwhelming.

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 hes 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, were 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 hes only four now. And the oldest one hed just like have vague memories. That bothers me, it bothers me about getting sick again.

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, shes 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.

So you were in the other hospital for a couple of months and then came home, how were you physically by that stage recovering?

I was fine. I was fine in myself anyway, you know, but I knew theres a lot of healing still to be done, and it has been done you know, slowly but surely it’s, everything’s getting better.

Could you tell me a bit more about how you felt through the different stages emotionally?

Very well considering, you know I’ve always had a dread because I’d never experienced it before, I always had a dread of having to go into hospital.

This would have been the very first time?

This has been my first time yeah. And when I used to visit people in hospital, relatives and friends, I used to think, you know, “Good Lord I’m glad I’m not in here. I should hate to be in hospital.” But then it happened and I’d been taken in and well everything, I seemed to accept everything so readily, so calmly and didn’t seem to bother me a great deal to be quite honest. I amazed myself I think really. I thought I’d have been a dreadful patient but apparently I wasn’t too bad.

[laughs] So you came back home and you’ve slowly been recovering?

Well yes.

Do you feel now that, you know, you’re back to the health you were before or not quite?

That’s a very interesting question because the operation that I originally went in for has improved my health in a lot of ways but I’ve been left with what I call bitty residual symptoms from Intensive Care and previous long term illness, right. If I was honest I don’t see, if you’re depressed, I don’t see the total answer is anti-depressants, and I would, I think a way to approach it is, that all this that I’ve been saying is scratching the surface. Because theres so much hidden, theres so much that the Intensive Care patient suppresses and hides. And I think the world is our oyster at the moment and that, you know, were beginning to make inroads into patient representation in Critical Care, and I think it’s going to take off in the next twelve months. I hope so, I hope so, it won’t be for the want of trying.

So in some ways you do feel your health, physically, your health is, better?

[Mmm]. Nods.

But then there are the residual things. In an ideal world, what might help with the residual things? Because some of these inroads you’ve mentioned, you’ll be making with support groups. Can you just tell me a bit, in the ideal world, how might the residual problems be?

I think something that we fail to take on board as people, as different persons, I think that something we fail to take on board that a period of critical illness highlights a lot of other things that have happened in the past. And you suddenly realise that a lot of things in the past haven’t been put in their appropriate pigeonholes. They’ve been put in the pending file and they’re just about hanging in there and you need to go into the pending file and put all these things that are pending from whatever it may be into the proper file. And I think that the way that that is going to be looked at, I think if you look at the, what’s known as the Pyramid of Human Needs and what people need, and I think we all want to feel warmth, and cared for, and fed, and loved, and looked after. And I think that one of the things that we can do with patient groups is give mutual support at the same time as gaining mutual support, I think that’s very important.

But it is hard. I admit I’m not very good company. I find it hard accepting what I’ve been through. I feel guilty for putting my family through what I have. I can’t bear to think of my family having to come and say goodbye. I just find it so hard. And I’m always wondering, I’m frightened if it happens again. Although I’m told that theres a small, very small chance of it happening again.

And that’s what you’d like to talk to the counsellor about? Why you’re having these feelings? Is that, you know, is that what you’d like to talk about? Why you’re having these feelings?

Yes, yes.

Have you talked with family or it’s someone outside the family you really want?

I have talked to somebody about it, who’s in the family, and they said, not our immediate family, but they said, you know, “You shouldn’t, you have got nothing to feel guilty about.” But I just, I just do.

Even now?

Even now, even now I still find it hard, you know. I just, you know, to imagine my, to imagine my kids there. I just, and, you know, my mum and dad, and my brothers. You know, I just find it so, I just feel so raw, so, it hurts.

Patient’But the physical side of it, I was really, really tired. I couldn’t manage across, sort of up and down the stairs once a day would completely wipe me out. And I’m used to being quite active and I couldn’t get my head around the fact that my body was saying you couldn’t do it really. And then if I got over tired I got really, really emotional didn’t I, crying and bad tempered. But as I’ve recovered, as I got better I took my, you know it took me that six months, I got really, it was a bit like a roller coaster ride. I kept, and there are still days even, what are we six, seven months on now, yeah I just couldn’t see the point of anything. And where I’m quite an optimistic person, I was having to really look for, you know it sounds dead cheesy, but the joy in things, where normally I’d sort of, “isn’t it a lovely day” and friends would say “Oh you know doesn’t the garden look lovely?” and in my mind I was thinking “Well what’s the point of it, were all going to die anyway?”

And I needed to speak to, I went back and spoke to the nurse consultant on ICU and she explained, and I only saw her the once but she explained it’s perfectly normal. And that helped, once she said to me, “Loads of people feel like that when they come out of intensive care and you need to be kind and give yourself a bit of time, it will pass.” I mean I still have my days but it’s not like it was you know sort of three months ago where I literally was turning everything that was positive into a negative. But I wasn’t telling anybody, I was sort of, well I was telling you [partner] wasn’t I but when I went back to intensive care I talked about it to [the nurse], it sort of made me realise it was normal.

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.

So you’re recovering. And how do you know how long you’ll have the VAC machine for?

No, it shouldn’t be much longer because like I’ve been on now three weeks. I don’t, maybe a couple of more weeks. And then I’ve got like to have dressings on. You know, to close it up finally. And then I’ll be normal, well, a bit normal.

So you’re slowly recovering?

Yeah.

Are you feeling better?

Oh yeah.

Day by day?

Yeah. Yeah, I definitely can tell, you know, because some days I even forget about it and forget I have a wound, and then I think, “Oh God”, you know. “You have been poorly but you’re getting better.” You know, because like, loads of people say to me, “Oh, you’ve been so poorly”, and, “you’ve been through it,” and I think, “Oh, shut up, I don’t feel like that now.” You know. I am now. Yeah.

So how would you like to see yourself recovering over the next few months?

Oh, I’d like to be able to drive my car again. And just like do normal things like swimming and things, because I used to go to swimming and just to be able to go, I don’t know, go shopping on my own and, you know, just to be able to walk without this machine [laughs].

I have to say from a mental point of view, I came home on a Friday. I actually broke down and cried on the Sunday because I felt so depressed, which is an odd thing because you would think by then you were cock-a-hoop because you’d got over it. But, being home was absolutely wonderful, but at the same time I just went through a period of, a couple of days of absolute depression. But I soon got over that.

Was this, was this when it all kind of hit you, what…?

Yeah.

…you’d been through?

I think so. Yes. I think it had. Coming back home, you know, the thought must have gone through my mind, I can’t say I consciously thought it but, when I left home “I won’t see home again.” Though I didn’t actively think that, till coming home, being back with my family you suddenly realise, “Well, I’ve made it.” And it’s sort of a relief, an outpouring, I don’t know what. But most peculiar. But I got over it.

Yeah. So, you felt a bit depressed for a couple of days. After that, you were more or less back to normal were you or…?

Yeah, obviously, normal is relative because you still feel extremely weak. Moving is careful to say the least. I had the, again a silly feeling that, an illogical feeling that if I do too much, it would all unzip itself. You know, which is stupid because they wouldn’t let me home if it wasn’t OK. By that time all the fixings were out and there was just one patch that hadn’t quite finished healing. But, yeah, I mean, you don’t, you feel quite tired, everything is a little bit of an effort. But you gradually get stronger and stronger and you, frustration I think is the way to put it because I’ve never been actually been seriously ill in my life before this. So not being able to do the things that I found, that I had been used to doing was extremely frustrating. But you learn to accept that you can’t do as much as you could before. But, every day, if you do as you’re told, you can do a little bit more. And I suppose the most valuable lesson is the fact that you’re not going to get over it in five minutes so you might as well sit back and take the time and do what the doctor ordered, basically.