Interview 01

Age at interview: 34

Brief Outline: In March 2005 her sister was diagnosed with Guillain Barre Syndrome. This is a rare disorder of the peripheral nerves, those outside the brain and spinal chord.

Background: IT project manager, living with partner, no children. Ethnic background/nationality: White British.

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In March 2005 her sister was diagnosed with Guillain Barre Syndrome (GBS). This is a rare disorder of the peripheral nerves, those outside the brain and spinal chord. Her sister was in ICU for about eight weeks, in a general ward for about a month and then briefly in a rehabilitation hospital. 

She lived some distance from the hospital in which her sister was a patient and visited her twice a week while she was in ICU. Other family members and friends also visited. The family kept relatives updated by sending daily emails. Later these emails, as well as text messages sent to the patient, were collated and became a record of the patient's progress and of messages from family and friends. 

She felt she might have benefited from some counselling once her sister was getting better and hadn't realised how worn out she felt until she became slightly unwell herself. Since then, she has decided to work in a less stressful job. She felt that her family became closer as a result of her sister's illness.
 

Since her sister's illness, she has found a new, less stressful job.

Did it have any effect on how you were working or anything? 

I think, yes, it probably did, in that my sister who got ill was someone who worked extremely hard and would work sort of from 8 in the morning till, and be in the office till 8 or 9 at night. A very stressful job in advertising. And sort of being about, I'm about eight years younger than her, and seeing her get to a point where she was just so stressed out by work. And then, you know, this actually hadn't been very well before this illness happened. She'd actually been off work with depression for a few months. And she'd only just gone back to work when she got this illness. But having seen her go through, you know, probably about, well, now maybe about two years of illness, I just thought, you know, 'Life's too short to sort of let yourself get caught up in something like that.' So I think probably, yes, it did, in that I definitely made a decision that I didn't want to be kind of working, you know, that obsessively at all. And I have now just, well, just left that job and just got myself another job, which will be hopefully much easier hours and not as stressful. And, yes, well, I think it had definitely sort of changed a few things.

Doctors so rarely come across the illness her sister had that she was taken into a lecture so...

She had this first visit to the hospital and then got sent home overnight. And then the second day they did diagnose it and then she was straight into Neuro Intensive Care. But it was a bit, yes, it was very scary and frightening that she didn't get diagnosed quicker. Because I think if she had been diagnosed quicker, possibly they could have treated her with some of the sort of things they do like, I think it's plasma transfers and things, immuno-globulin treatment which would have actually prevented the onset of the sort of damage to her nervous system that happened. I mean I'm not saying that it, you know, I don't actually know for a fact that that could have been avoided. But I think if she'd been treated quicker then it might have helped. 

So when she first had the symptoms she went into hospital, into A& E? 

Yes, yes. 

With anybody? 

She went with a friend. And as I say she saw this young doctor, who I think was very, you know, obviously hadn't seen it before, didn't know what it was, thought it was a bladder infection and sent her home. Asked her friend to stay with her overnight. And I think actually after that happened, when she was diagnosed with it properly and after she'd been in Intensive Care for a while, she did actually go and talk to, they wheeled her down to a student lecture. And I think they did actually, she did actually have a visit from this doctor who'd been unable to diagnose her because obviously it was something that, you know, she had to learn in terms of her training. But it was just very difficult. Because I suppose you can't, you know, you're not going to necessarily be able to show someone an example of someone with Guillain-Barr' during their training because it's so rare. It's difficult to diagnose. 

She was shocked when she saw her sister in ICU She'd been temporarily paralysed by her illness...

So the first time I saw her it was quite scary, because she was, basically by that point it [the illness] had gone sort of all the way up her body. So she was completely paralysed. And her face was affected as well. So she had, her eyes were rolling and she sort of couldn't focus on us. And obviously she was heavily sedated because she was in, with all the tubes and everything. And I think she was, they have to sedate people to stop them from getting too scared and pulling all the tubes out. So she looked pretty awful the first time I saw her. Which was not very pleasant. And I think we were all a bit shocked at that stage because we didn't know anything about the illness or what was going to happen. 

Gradually her sister was able to communicate, sit up in a chair and go outside for short periods...

So she got her face and her facial movements back slightly, but was a bit sort of twitchy and, you know, she couldn't really control her movements. But it at least meant that she could sort of see us again, even though she had, I think she had double vision at that point. So she was given a patch to wear over one eye to stop her from having this sort of difficulty of seeing around.

And she started to be able to communicate, using the boards with the letters on. But it was quite funny that she, having been through that for the last probably about a week and a half into her illness, and we thought, you know, the first thing she would try and communicate would be something really profound or, you know. And actually it was something like oral hygiene was her first communication. Because she wanted to have her mouth cleaned because they hadn't actually cleaned her teeth. And it was, that was quite interesting to us. That was the first sort of realisation that what really mattered to her was being comfortable and being clean. And just everything that you, you know, you don't really think about what's going to happen in that situation. So we were then able to ask the nurses if they could clean her teeth for her. And we also started, sort of day by day we would clean her face for her and do things that I think she didn't mind the nurses doing, but sometimes it was, you know, she liked it if it was someone from the family doing it, because it just made her feel more comfortable. 

So I started going to visit her probably twice a week. I'd sort of take half a day off work. I live quite a distance from the hospital. So I actually had a sort of two-hour journey to get there and two hours back again. So I'd take half a day off work and go down. And then I'd go down on the Saturday. So it was quite a, it was sort of for, I think that was for about two months when she was in Intensive Care. But it just seemed like, our family are quite close and it just seemed like we all wanted to make sure we were there as regularly as possible. So from that point we did start to see some improvements. They put my sister into a chair every day. Which I know she hated to begin with. She found it really uncomfortable because she couldn't support herself. But it was to keep her upright so her lungs could drain better. But she really hated it. They did take her outside a couple of times on the balcony. Which she really liked, she liked having the wind in her hair and the sun on her face. And then they started putting her into, I'm not sure what it's called, but a thing like a board, they put her on a board so that she could be tilted upright to stand up. And I know she found that really difficult the first couple of times. 

She was shocked when she found out the cold her sister had was life threatening and had...

They [family] didn't phone me until she was diagnosed with it [Guillain Barre Syndrome] in Intensive Care. So I didn't know she'd actually gone into hospital that day. I was phoned up when she'd been in overnight in Intensive Care. So by that point she was, you know, already on the ventilator and'. 

Who phoned you? 

My mother phoned me. And then I, you know, basically just arranged to sort of have a couple of days off work so I could go down and see her. 

It must have been quite a shock to hear -

Yes. 

Because if you'd seen her a few weeks earlier, had she just had symptoms of a cold? 

Well, I'd just, the last thing I'd heard from her was, I'd had an email just saying that she'd had this awful flu but she was better. And that was the last thing I'd heard. And then, you know, next thing I know she was sort of in hospital with this thing that we didn't know what it was. 

She'd had sort of pins and needles in her fingers and her toes. And she'd been away for the weekend and she'd had this all weekend and felt a bit strange. And then when she got back, she started to lose the use of her legs and her hands and arms and couldn't pick things up. So her friend took her to the hospital. 

She found it upsetting talking to people who'd been bereaved but reassuring to see some people...

What I found quite difficult was meeting some of the other relatives of people in Intensive Care, because their family or friends were actually possibly not going to get better. And some of the people in there were really sort of seriously ill, and obviously my sister was seriously ill, but we knew that illness was going to get better whereas some of the other people, they'd maybe been with someone who'd been knocked off their bike and had head injuries. And that was quite difficult to speak to his family, because, you know, they didn't know if he was going to pull through the night. And there was a girl who'd been attacked and stabbed. And that was quite difficult because there was a lot of press coverage around that and there was lots of police around the ward to stop people from getting in. So the whole situation with that was quite difficult, because you had to, not only cope with going in and seeing your, a member of your family who was ill but also all these other things that were going on around you. And it was, I mean it was nice to see when some people did recover and moved out of Intensive Care quite quickly. That was great. But obviously there were some people who didn't make it. And that was quite upsetting to see their families and know that that person had not made it. 

Did you meet these all in Intensive Care, in the Visitors' Room? 

Yes. Yes, sort of sitting just outside Intensive Care. Because obviously sometimes you can't go into Intensive Care. Either they're, you know, they might be washing the patients or they, you know, there's certain times that you can't visit, like they have quiet times.

Two of her sisters hadn't been getting on very well but, when one of them became critically ill,...

I think they [relationships] have changed. Because there was actually I think a point before my sister got ill that she and one of my other sisters weren't getting on brilliantly. They'd been very close for a long time, but they'd sort of fallen out over something a bit. And to the point where, when they took her into Intensive Care, I think my elder sister was unsure whether she should actually be going with her to Intensive Care, because she wasn't sure whether my other sister would want her there or not. But, you know, as it turned out, I think once she was in Intensive Care her elder sister became, you know, her main support. So having sort of not really spoken to her much for a long, you know, for a few months, or not been that close to her, suddenly again they became very close. So I think, yes, I mean certainly I think a lot of things, you know, did change, some things. 

I think probably inevitably relationships with the family have been strengthened. I mean I don't necessarily see them a lot more than I used to, but I probably communicate with them more regularly than I used to. So I think, and I think probably the relationship with my partner has, you know, sort of changed as a result of it, for the better probably. You know, that we ended up talking about things that we might not have talked about otherwise.

She and other members of her family helped clean her sister's mouth and with other aspects of...

In general I found the nurses very helpful and very kind - 

In Intensive Care? 

Yes, yes. And I think they were quite relaxed about us doing things like washing her face and all, obviously there were issues about germs and hygiene, but they were actually very good about us doing things like that, which I thought was good. Because, you know, you want to feel like you can kind of go in and do a few things for the person you're visiting, without feeling like you have to ask for everything that you're going to do. To the extent where we were able to sort of use the little sponges on sticks to moisten her mouth, and use the tube to suck the stuff out of her mouth for her, and things that otherwise you'd have to ask the nurse to do every few minutes. 

You know, you could at least, sort of the only thing that, sort of things you couldn't do were things like when she needed to cough. And they had to put a tube down and that was really horrible to watch. But once I'd seen it once or twice I knew what it was. But it was, she went bright red and started sort of convulsing. And then the nurses would like, 'Oh, no, this is, you know, all we have to do is just put this tube down and it...' I know she hated that. But it had to be done. And it's just quite interesting to see the way someone has to be sort of kept going in those circumstances when their body just can't do anything for itself.

She and her family made a diary from the emails and text messages they'd received while her...

We didn't keep a diary. But we did write these daily emails. And I sort of kept all those emails and collated them into a thing which I think I gave to my sister. But I can't remember if I actually gave them to her or not. But she had all the text messages that were sent from her phone. Because we used her phone because it was easier, because there was all her numbers on it. And all the emails that we sent, she got copied in. So she had them all when she got better. But that's, I mean that in a sense formed a diary, because it was sort of a day-by-day account of her progress. And I remember at one point she, I said that we'd been sending these emails, and I'd read back over some of them, and this is when she was still in Intensive Care, and I said, 'Oh, it's amazing to see what progress you made'. And she wanted me to tell her all about her progress and what had happened. Because, you know, it was only at that point when I actually realised that she didn't actually know what had happened in the first three weeks or so. She was completely, kind of, it was all just a complete haze. 

Her sister's friend sometimes drove people to the hospital, looked after her sister's home and...

Did anyone outside the family help at all, giving lifts or'? 

Well, we had, yes, we did have, a couple of my sister's friends live down near my parents and were able to sort of drive up and give people lifts. And there was a friend who lived very close to the hospital, who would visit every day and was just brilliant and sort of, kind of went round to her [sister's] house and just made sure that the curtains were, you know, opened and closed and made sure things looked like, you know, they were still being lived in and mowed the lawn and things like that. Which was brilliant. Because I mean we went, we would quite often go to the hospital and then go round to my sister's house, because it wasn't very far away, and have some lunch or something. But it was just nice to be able to have people who were kind of helping out all round. 

Did you know those friends very well at the time? 

No, we didn't know them very well at all. Well, the one in particular, who lived nearby, but, you know, became sort of very, very sort of close friends, almost like family, just over that time. 

Her sister is now much better, more independent and has spent a lot of time visiting friends...

She moved back to her own home? 

Yes, yes, her own home. I mean we thought she'd probably have to move back with one of the family for a while. But she was very independent. Wanted to be sort of back at home. And she did manage with online shopping and things like that. 

Did she have any carers coming to help at all? 

Well, she had, she did have to get to physio still, so she just kind of got taxis and things. But I can't remember if she had anyone, I don't think she did have anyone come to visit. Because by that point she was able to sort of look after herself reasonably well. And she had a friend who lived just down the road who came round almost every day. 

Now how long ago was all of this? 

It was, it started at the end of March in 2005. So it was just about a year and a half ago, or just under. 

And how is she now? 

Well, she's very well now. She's not gone back to work yet and she still has not the energy levels of her, you know, of when she was well. But in terms of her paralysis, she was very lucky in that that was completely, completely gone. But I know she did have very sensitive feet and hands for quite a long while. And she still has physio because, and she's been very good about doing all her exercises. And I think that's why she's got better so quickly. But I think at the moment she's undergoing some occupational therapy in terms of whether, when she'll go back to work and whether she'll be able to go back to work for, you know, just a couple of hours a week or a few hours a week. But, yes, she's been driving for quite a while. She's been travelling around all over the place visiting friends in different parts of the country. And so, yes, she's much, much better.