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David

Age at interview: 49
Brief Outline: David’s wife was diagnosed with relapsing-remitting MS in 2006. David presents a positive outlook and describes MS as an unhelpful disruption in their life, but not something that, so far, stops them doing many of the things that they want to do.
Background: David, age 49, is a civil servant. He is white British, married with two children.

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David’s wife was diagnosed with relapsing-remitting MS in 2006, a year or so after experiencing double vision. After referral to specialists and following investigations, David heard of the diagnosis while on holiday with his son, in the dark of a gloomy castle in the middle of nowhere. This seemed to be a metaphor for the previous whole year spent in the dark, not knowing what was the cause of his wife’s symptoms, which also included difficulties with mobility and bladder problems.

Despite progressive fatigue and continuing problems with vision which mean she has had to stop driving, David’s wife still works full time, though she is now able to work from home two days a week. David also works full-time, and the illness has changed the pattern of what they do at home. Previously they shared domestic tasks equally; now, David takes responsibility for most of it. His goal is to relieve the burden on his wife and he sees one of his main roles as ‘cheerleader’ for the household, to keep everyone motivated and looking on the positive side. So, despite the illness having a progressively greater impact, he thinks they are coping with it. 

David is looking forward to their 17 year old son going to university next year (their daughter has already left home), so that he can concentrate more fully on doing things with his wife. He describes MS as an unhelpful disruption in their life, a chronic condition that is not going to go away, but not something that stops them doing what they want to do. They are still able, for example, to share their interests in visiting gardens, bird watching, going to the seaside, visiting family members. They are active supporters of the MS Society in their town.

They have had good health and social care support, though sometimes it seems a bit ‘patchy’. All this he sees as very positive but ultimately, David thinks you are left alone to manage with the illness, for example, by remaining as active as possible and continuing to exercise. His wife receives symptomatic treatment and he knows there is no ‘fix’ for the illness.
 

David’s wife Sandra has relapsing remitting MS. He explains that she has had periods of remission and relapse. Her symptoms come and go but they never seem to go back to how they were before.

David’s wife Sandra has relapsing remitting MS. He explains that she has had periods of remission and relapse. Her symptoms come and go but they never seem to go back to how they were before.

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And did they give it a name at that time of any particular type of MS?

They said it was relapsing- remitting. And obviously, you know, you look that up and you understand that you can go in remission for, you know, a long, long time. For Sandra it certainly seems to have been a bit like that. 

But Sandra’s is obviously, it’s definitely plateauing. It sort of tends to have an episode and then you’re left at another plateau, and then you get another episode and then you seem to be on a different level. Because, you’re not really going backwards but it definitely seems to be going sort of like a plateau type basis and I think that’s the thing, So, I think, at the moment, if you have something quite bad, you think that’s another big episode and then you reach a, reach a certain sort of level. I mean you can quite clearly see it now. It’s sort of staggeringly obvious now.

But there’s only been sort of like two or three, I think maybe three really bad episodes. Most of the times over the last five years it’s been fairly constant little bits. Very incremental sort of changes and then all of a sudden it’s quite a big change. Because last year it was the fatigue which just knocked Sandra for six. Virtually all the time she was just really, really tired. But she got over that. And was back, to not normal, she stopped going to the gym, but she was pretty active. Whereas at the moment, she can hardly walk ten yards. And in fact ten yards is probably the most. Whereas hopefully that will, you know, go into remission again and if it does that will be brilliant, because that means, that yes, okay you’ve had a horrible time, but then you’ll go back to being sort of, sort of semi normal. Well that’s what we hope. Because the eyesight was really bad, but then it got better. The fatigue got better. But you’re never quite back at the same position. You’re at a different position all the time.
 

David and his wife talk about the possibility that certain events in her younger life were caused by MS, but he thinks you can’t be certain about it.

David and his wife talk about the possibility that certain events in her younger life were caused by MS, but he thinks you can’t be certain about it.

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In retrospect, did you think that she’d had some symptoms that might be related but were unrecognised at the time?

I think there’s a potential, when you actually look at all the things back in hindsight, you think that there is that possibility, but I’m not a doctor, and I wouldn’t like to say that that’s definitely the case. But when you look back at certain events, I mean, I have known Sandra since she was 18. I know that she didn’t used to behave like that, or didn’t react to certain things in a certain sort of way before. And I think there’s always the possibility, we talk about it quite a lot, to say I wonder if this was that and that and that. But how would a doctor diagnose it? How would you dia… you only look at these things in hindsight. And it all builds up so to speak. But I, I don’t know.

It would explain a lot of things, though on the other hand, that might just be may be a very convenient excuse for the fact. Certainly when you go to work, I mean Sandra, you know, we work really hard. The jobs we have are quite, becoming very stressful and therefore yes, I mean stress does funny things to people, so it doesn’t mean to say that it’s MS, it’s just that it could have been, and it would explain why certain things didn’t really work out very well at that time. It was harder to deal with. But that’s just in hindsight. It’s difficult, difficult to say. 

So, I think, at the moment, if you have something quite bad, you think that’s another big episode and then you reach a, reach a certain sort of level. I mean you can quite clearly see it now. It’s sort of staggeringly obvious now. But prior to 2006 I wouldn’t, I would hesitate. Lots of friends have said, “Well, that probably explains certain things.” But I don’t know, I’m wary of joining up the dots too much because there’s so much goes on in life that you know, you’re just blaming it on one illness. I don’t think that would be right, to be honest.
 

David’s wife told her employers about her diagnosis. They don’t want to lose her and have supported her in working flexibly.

David’s wife told her employers about her diagnosis. They don’t want to lose her and have supported her in working flexibly.

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So, over the five years Sandra has been going continually to work. She works in London and what’s happened is the actual, she has had to adapt the way she works. She now works at home two days and that’s going up to three days a week. So the amount of time she has to spend going to and from the office is going to shrink and that’s good because that means she can work from a laptop. As a government official she can’t bring home materials necessarily, they have to stay in the office so she has to do some work from home. But they’re getting round that. So they’re working around because they’re governed by the Disability Discrimination Act, they’re working around to make sure that she can keep working because she is a skilled, very skilled individual. So they don’t want to lose her, and she’s got a long way to retire, before she has to retire yet. At least that’s the hope anyway.
 

David does nearly all of the household work now and is ‘constantly trying to juggle things to keep us all going, but also to keep us cheerful.’

David does nearly all of the household work now and is ‘constantly trying to juggle things to keep us all going, but also to keep us cheerful.’

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So not only were we changing the patterns of, we had to change the pattern of what we do at home, like I do correspondingly, well I do virtually everything now, but I mean before it was always 50/50. We’ve always been fairly democratic about these things, and it’s now more 90/10 sort of thing; indeed at the moment, Sandra’s not very well, it’s a hundred per cent. So I’m doing most of the things. But that’s, the domestic thing is just to take the burden off Sandra and also reassure me that she’s not going to fall over, fall into the fire or into the oven, or scald herself or something like that. I would hate that to happen.

Our son is 17, once he finishes his A levels next year, I’m hoping that he can wheee… fly away like his sister has, which will be brilliant so that the time I have to spend on him can then be transferred to Sandra which will be brilliant, because that means I’ve got more time for Sandra and more things, time to do my own sort of stuff. So it always feels like we try, you know we’re constantly trying to juggle things to keep us all going, but also to sort of keep us cheerful. That’s not always easy when you’ve got an illness like MS, because it can lay you flat, it can just all of a sudden knock you for six. And I have to be the cheer leader in a way for the household, which I have no problem with and I don’t need alcohol for that, I can just be myself. Whereas Sandra, I know sometimes it’ll get her down and that’s when I’ve got to try and pull her out of that sort of thing, get her motivated. Got to get her motivated for work which you know, getting up half past five in the morning is an early start for most people and doing that at least three days a week, it’s a lot of effort. So you’ve got to keep cheerful. You’ve got to try to see that things have got to work, and you’ve got to just try to get on, get on with things. So that in many ways is I think where I am at, at the moment. 
 

David has willingly replaced trips to the theatre with gardening, or with trips out that he and his wife can still do together. He can walk a long way on the sea front or in public gardens, pushing her in a wheelchair.

David has willingly replaced trips to the theatre with gardening, or with trips out that he and his wife can still do together. He can walk a long way on the sea front or in public gardens, pushing her in a wheelchair.

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We don’t go out very much at the moment but we, that has, the going outside has, has sort of shrunk. That I don’t mind frankly because I have seen enough plays and cinema for a lifetime to be honest. I’m more interested in doing other things these days. But for Sandra keeping social contact is the thing that meant more than anything else, and I hope that I facilitate that for her all the time. Because if I didn’t I think that she would be, you know, not only would you be having to cope with the illness, you’d also be feeling socially isolated, and I don’t want that. You’ve got to have a sort of, be connected to the wider world. You don’t want to be, I mean at some point Sandra might become you know, more housebound and I might have to correspondingly look after her more and work part time or something like that. Because I can do that and I don’t mind that actually [laughs]. It would be quite good. I could do more gardening. As well as do other things. So there’s a plus side. There’s an up side of things. We might be a bit poorer, but on the other hand it might bring more satisfaction in a way.

You’ve talked about having seen enough plays and films to last you, and preferring to do other things. What other things, in the time you do get, do you like to do?

Well the things that we like to do. I know Sandra can’t go walking, but she likes going to [place name] and because her Mum and Dad live up there, so you can go up there and see, you know, be driven around and sight see while I can be walking up somewhere tall and pointy. Or you know, we can go down to places like [place name], which is not far from us, and you can just drive down there and walk. I can push the wheelchair for eight or nine miles along the front, you know, and that’s really good. I might do that on Sunday. 

So you know, there’s things like that which we still like doing together, except one person’s in a wheelchair and the other person’s walking. And you know, that’s the sort of thing which I mean we do like. We like going bird watching still. Because we can go bird watching down in Rye. Watch, see all the birds down there. You can do that. Our own park, up here, has got enough geese and God knows what else up there. So, there’s still lots of things like that. 

I mean we’ll probably go to the Royal Horticultural Society, in Wisley, because that’s disabled, quite disabled, friendly so to speak. You can wheel someone round that, cause I’m a member, and that sort of, going to gardens and going places for long walks. We can still do that a lot together, and to be honest, I mean that’s, that’s when we get the chance, that’s what we like doing anyway. I’m not that bothered about being stuck in an over-priced seat in a hot theatre in London not even, no matter who’s in the show. I’ve done that. I’ve been there, seen that, seen Patrick Stewart. That’s all I want. That’s great. 

So, you know, we don’t feel as though we’ve because Sandra’s restricted now, we don’t feel as if we’ve, sort of been left out of a lot of things, we feel as though we’ve made sure we’ve done that when we were younger. So we don’t feel, you know, regret that we can’t do that now, because there’s other things that we like doing in our spare time. So, you know, there’s plenty out there when it’s sunny. Of course it’s difficult doing that in a wheelchair when it’s pouring with rain. If you’re just a walker, like I like walking, you can just go out whatever the weather’s like. As long as it’s not too bad, you don’t mind. But obviously now you have to take that into consideration so …
 

David works at demolishing the barriers which MS can create between himself and his wife so that they don’t lead separate lives. Sometimes it feels as though she is building a wall around herself.

David works at demolishing the barriers which MS can create between himself and his wife so that they don’t lead separate lives. Sometimes it feels as though she is building a wall around herself.

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But personally it sort of, it’s a bit odd, I must say, it does seem very odd, because obviously I’ve had a very active partner. I’ve known Sandra for oh 30 years, 30 odd years, we’ve been married 29. We have a pearl wedding next, next April. So I’ve known Sandra for a very long time. So I know her inside out and I know, you know, what she likes and what she doesn’t like. So we can, we can work on, sort of doing things together, and keeping together, I think sort of not… It’s the aspect of what’s the right word? I can’t think of the right word at the moment. But it’s keeping our relationship alive and kicking. We’re not just become a carer and someone who’s sick. We’re doing all the things that we should be doing as people that work, so the illness, even though it has a greater and greater impact on Sandra, I actually think that we’re coping with it.

But it’s a way off, all these things are a bit of a way off, they’re not going to be, it’s not tomorrow, it’s in the future, and I never thought in five years time I’d be saying these sort of things to be honest. It’s just that I’ve often described it as though sometimes Sandra’s building a brick wall with her illness between me and her, and what I have do is smash it down occasionally, push it over. It’s like someone building with a sandcastle and you have to push it over to try and get back together again, because if you don’t, you end up, I think, leading very sort of separate, sort of lives, and I don’t think you have to. I think you can actually lead, it’s difficult, but you have to do it lead really a very sort of active and it will all be worthwhile doing it. 
 

Recognising that MS is a chronic illness, with a ‘continual line of progress,’ explains the long list of symptoms which David’s wife experiences.

Recognising that MS is a chronic illness, with a ‘continual line of progress,’ explains the long list of symptoms which David’s wife experiences.

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We went to the doctors once and there was a long list of actual symptoms that were wrong. Collectively it’s, it’s you just say, “Oh, it’s the MS.” And just put it down to that. But there’s a lot of different items, you know, that are part of that condition. Lots of them. I mean Sandra’s fortunately not suffered much from pain. Cause I know you can get pain, but we know that she has had that. We know instantly, now, it’s MS. Before you might have just said, it was oh I’ve pulled a muscle or something. Now it’s the MS. And that sort of thing. 

So you do, you’re very conscious of that and seeing everything filtering it through it’s this, it’s that. And you know, you’re just, I don’t know, it’s almost like being, I don’t know, it’s like having a continual illness, but in a funny sort of way, you’re, if you get a cold or something in a normal person, you think there’s a beginning and there’s an end, whereas this there’s just this continual line of, of progress and with all these different episodes puncturing that line, so to speak. So, it’s different. And as I say it’s a chronic illness. And that’s the way I always think of it now, it’s a chronic illness and it doesn’t stop you doing what you want to do, but it doesn’t help and it does disrupt, obviously, all sorts of things. 
 

David says that the care services have been good but that they could be better co-ordinated.

David says that the care services have been good but that they could be better co-ordinated.

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I think the only thing for me is mainly the fact that it did seem a bit, it seems very, I don’t know, bitty. There’s something about it which, it’s been pretty good. I mean the physiotherapist came yesterday, and she was really nice and really good and the one that came before that was really nice and really good. But there’s a certain sort of hit and miss about certain things. You feel as though someone should be taking more concern about what’s actually going on with you in a way that might, you know, so when something does hit you, like it has happened over the last two weeks, you would be prepared a bit more, in a way, because obviously these things might happen, they might not, but there’s such a big, the trouble with MS it’s quite a big thing. It’s not just one thing. It’s lots of different sorts of symptoms.

So it may be a bit hard, but at the same time, you feel as though there could be a bit more foresight. Not too much more foresight, but just a bit more joined- upness. I mean there’s a different… I mean [council name] came out to see us to fit handrails and said they would do something else and then forgot all about it. And it would be nice if someone had taken up the case to coordinate something between themselves.

When we applied for the Disability Living Allowance because we’ve got to get it to get the blue badge whether or not something, the communications that go between different parties would have got through initially. Because when we did it initially they sort of went on one report and not on another report and there was, you know, because Sandra, when we applied for it, we hadn’t seen a consultant for about six months. So Sandra’s condition had changed. So when they wrote back they could only say what they’d said, saw six months ago. So it’s always sort of a bit too late. Because these things are obviously changing all the time. I don’t know, but it just feels sometimes, it feels a bit ponderous and bit, a bit slow, but then that’s the National Health Service in a way.

It sounds like you need some kind of key worker who is on your case.

Yes, yes.

On every aspect of it.

Well, someone you can talk to about it, that’s not necessarily at a consultant level. So, someone slightly below that, that can make… and the MS nurse is proving absolutely, she’s been, come to the fore a bit more over the last year, and I know Sandra has spoken to her a bit more and that’s been very useful. So, you’re not out on a complete limb, so to speak. You do feel as though there are some people there that will know you.

And actually our GP’s been pretty good. He’s been very, you know, he’s been really good, you know, he actually asks me how I am. You know, how are you coping? Even though I’ve been in about something completely different, I’ve been out about some other things, but nothing very major. Routine sort of things and he’s asked me how I’ve been so our GP’s been pretty good and he’s been pretty good towards Sandra as well. 
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