Normality and optimism with MS

For anyone diagnosed with Multiple Sclerosis (MS) and their family members, there will be some uncertainty about how the condition will affect their lives, and how far they will be able to keep up their usual activities. For some people, life with MS may not bring about huge changes, and people talked to us about how important they felt it was to keep life as normal as possible. As Ian said, ‘We live quite a normal life, apart from she can’t move around like she used to.’ But some people’s lives had changed more significantly and they realised that, at the same time as trying to keep things normal, they had adapted over time to create something they called a ‘new normal.’ Kate describes treating the abnormal as if it’s normal; that is, a life which is ‘normal to us, but probably not to everybody.’ Kay Z notices when on holiday that, ‘It’s only when you step out of your normal routine, out of your normal environment, that you suddenly realise how different your normal is.’

Alice thinks it is important to talk to other people in similar circumstances, because your sense of what’s normal becomes, skewed.

Age at interview 35

Gender Female

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You know, it’s strange how what is normal becomes very kind of skewed and that’s why I think it’s important to talk to other people in similar situations, which I don’t have, because your whole experience of the world does change. Your whole experience of normality changes. Your whole experience of illness changes. And you don’t worry about, you know, the bus being five minutes late.

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One thing people need to think about is how far they want to mix with other people with the condition. For both the individual and their family members, it can be frightening or depressing to see people whose symptoms have progressed, and often people are worried about being labelled as ‘a person with MS’ or being defined by the condition.

Louise wanted to carry on a normal family life. Neither she nor her husband wanted to mix with other people who had MS.

Age at interview 49

Gender Female

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I don’t think for me I would I would want to go to, I mean go and talk to people in a sort of an MS group or something like that. That just wouldn’t be what I’d want to do and that’s partly also because of Chris’, of my husband, he definitely, at one point ages ago the GP sent someone to collect him, who arrived with a bus, to say they were taking him to the MS local group and he just flatly refused to go and he definitely, would never, I know he wouldn’t and I suppose just because that’s the way he wants to be, I’ve just been the same really.

Yeah and when we and when you go to hospital, for instance, on various medical appointments throughout, say, two or three times a year and then you are with a lot of people who, you know, at the MS clinic or whatever, I know he always comes up and says, Oh, wasn’t that depressing. I don’t mind. I talk to people and, you know, but I know he finds it, he just he also doesn’t want to be, I suppose, someone with MS. Hed rather hed rather just be him and at home with his family and, yeah, and try and carry on pretty much. I mean all of us have tried to carry on as much as we have been able to as we would have done, you know. We haven’t wanted to move. You know, my parents spend the whole time saying we should go and buy a bungalow somewhere but our children have gone to the local schools, weve got loads of local friends, weve got a good GP, near where I work. So why would we want to move? So instead weve got to, you know, try and sort out our house to sort of fit, you know, Chris’ needs more and make it more accessible.

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At the same time, talking to others who have experience of the condition can offer good practical advice and it can be reassuring to talk to others who understand how you feel (see summaries in the section – Finding and giving support). Sarah sees the positive side of interacting with others and advises people to try to get past the initial worry. ‘I think that people are too scared, especially when you’re newly diagnosed, to go up there [therapy centre], because if they see one wheelchair, then they see that as their wheelchair in seven years’ time and things like that. And I think it’s important that they try and get past that. I think that’s the worst stage, trying to get past the initial shock obviously, the initial worry. And actually start taking part in things. Because there’s not many people with MS I know that will actually go out to those things, that aren’t positive.’

For some people, being normal meant trying to carry on as before, sometimes ignoring or rejecting other people’s views of what you could or couldn’t do. Louise was resisting pressure from her parents to move from the house where she had brought up her family and which still suited their lives in many ways. Several people carried on planning their holidays up to two years in advance. When Nick spoke to his brother on the phone it often seemed as though everything was normal in their lives.

Although she thinks having MS is a hard and lonely road,’ Louise tries to focus on the positive things in her son’s life.

Age at interview 61

Gender Female

But it is a hard road and I think everybody travels it on their own to a lot of extent, it is a lonely road. And I spent a lot of time thinking. But on the other hand, you know, I try and be positive because it’s, hes got a life and hes got a good life and hes enjoying himself and, you know, I keep saying theres things he can’t do but theres a hell of a lot of things he can do, can and does and is doing and has a really interesting life. Hes very optimistic about what hes doing and he gets on with things. Hes not dwelling on his illness all the time so that’s what I try and do, so just get on with life and try not to dwell on it all the time. And you know, don’t let it take over really put it in its place [laughter] if you can.

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Keeping things normal was part of a positive attitude and optimistic outlook that many people we spoke to seemed to have about living with MS. People talked about having a ‘can do attitude,’ and a ‘fighting spirit.’ They found positive aspects to life with MS, even where there were huge difficulties, either because they saw themselves as optimistic by nature or because they chose to be positive.

Paul wants to take a positive attitude. He realises that limitations will come as MS progresses but he makes the most of their life as it is now.

Age at interview 56

Gender Male

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I have a can do attitude. My wife, because of her condition does tend to I can’t do. Causes a little bit of conflict, sometimes. But I, you know, try to be positive. If I can do it, I will. And if I have to go roundit can be done. Ithere will become a stage, I know, my wifes condition, where she won’t be able to stand and we will end up probably tied , or limited, in what we can actually do. But then we can sit down afterwards and say, Wasn’t it good when we did this?’ And that happens to everybody, with age. You just get old. We can’t stop that. But you can sit there a good friend of mine has this thing, the rocking chair syndrome. He wants to sit in his rocking chair and think, I did this, I did that, I did the other. Not, I wish I had done this, I wish I had done that’And that’s some of the best advice he were my first boss, hes my best friend and some of the best advice I’ve ever had in my life. So if I can do, I will do. If I can make it happen for her, I will make it happen for her. Because it makes her life better. I get more pleasure from that than anything else. To see that smile come on her face because shes wanted to do something and weve done it.

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Norma thinks she was born to be a happy person. Both her sons’ were diagnosed with MS but their acceptance of their condition helped her, however burdened she felt, to keep on uplifting them.

Age at interview 70

Gender Female

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I thought to my…where I find the strength to be brave by thinking that if they have got the condition and they’re feeling happy and content it is my duty to keep on uplifting them. And as burdened as I’ve felt and as tired as I’ve felt I decided that is the way it’s going to be and that’s the way I kept it. And I just think I was born to be a happy person. So it doesn’t matter about whatever happens, I try to create an atmosphere that will give me peace. For myself and for the people I’m caring for.

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Sarah thinks being optimistic makes life less of a struggle and that people shouldn’t think of MS as a death sentence.

Age at interview 17

Gender Female

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Sarah: And it’s, it’s like a death sentence for a lot of people, isn’t it?

Ray: Hmm.

Sarah: They seem to think that, Oh, I’ve got MS, that’s it. Give up. No point. I, you know, five years time I’m going to bed-ridden, can’t feed myself, this that and the other. Because they’ve seen the worst in people a lot of the time. But it, it is, it’s not, it’s not like that. The majority of the time, like I know people that have had it for as long as mum, and the same, better, worse conditions, it doesn’t matter how long you’ve had it, it’s just basically luck whether, and, and optimism as well. Looking at the positives because if you’re negative of course you’re going to struggle more. Because you’re going to say, Oh I can’t do that, so you’re not going to try. Whereas if you’re optimistic and you do try I might say, oh well, that failed but I know I can do this so that doesn’t matter. Like mum with the stair lift, you know, it’s, I have to have a stair lift now because I’m getting exhausted doing the stairs but on the other hand I can still do them, just not all the time.

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Anita’s teenage life caring for her mum was very challenging, but she has found positive ways to learn from her experiences. It has made her appreciate her own health and think what really matters in life.

Age at interview 37

Gender Female

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But there are some positives as well because to my mind the only way I can sort of celebrate my mum’s life and make sense of it is to learn from it. So [clears throat] I do that by trying to say, OK, well you know, what if I get up every morning and appreciate the luxury of being able to brush my own hair. And I’ve taken my health seriously, that’s a good thing. And if I’m open to other peoples emotions and feelings and genuinely care about other people then that’s a good thing. I do quite a lot of charity work and that’s because I think you just realise what’s important and maybe a bit of me still needs that to be needed, which is obviously that, the role that I’d kind of had with my mum. I was, you know, very needed.

So, the positives are that it, it makes you true to who you are actually and it makes you really realise what’s fundamental in life and what you can’t take for granted. But, yeah, I would say that it does have a profound impact on, on how you feel.

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Alice has been surprised at her ability to adapt, to manage complex situations and still to have fun with her partner.

Age at interview 35

Gender Female

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I think the one thing that I’ve learnt more anything is that you do adapt to the most difficult and challenging situations. I think I was a lot more frightened on the first diagnosis. I mean I was absolutely terrified and now life is kind of okay. It’s enormously difficult but it’s okay and we still continue to have fun. You find enjoyment and pleasure in the most extraordinary situations and there are ways of managing extremely kind of complex situations and you do find strength within yourself that you don’t think you will have. You know, as human beings we have this unbelievable ability to adapt and I think that he and maybe I’ve kind of surpassed ourselves in what we thought we were capable of coping with and that goes for I think everyone who’s living with a kind of partner with a terminal condition or a friend or a, I don’t know, or perhaps living with the condition themselves or someone who’s lost a family member, or whatever it is. People, you know, find a way usually to cope.

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Maintaining a positive attitude may not always be easy. Family members often talked about wanting to keep positive for the sake of the person with MS as well as for themselves. Christine explains that she thinks her boyfriend is sometimes ‘too accepting’ of limitations to what he can do, whereas she is more optimistic and sometimes thinks ‘he needs a good kick!’ David pointed out that you have to mix positivity with some realism. Paul Z said that encouraging his wife to think she could still keep mobile and do lots of things was important to him; but this had almost backfired when trying to claim disability benefits which are judged on how severely disabled the person is. Others admired their relative’s positive outlook but sometimes found it hard to feel the same. Chez worried that her husband was so determined to remain normal and not accept MS that he was not dealing with the diagnosis.

There were times when people resented the ways in which MS had changed their lives and deprived them of normality. John wanted more acknowledgement of what he did for his wife and what he had to sacrifice. Chez said that ‘fighting’ for services can make you ill and that sometimes she feels like ‘I can’t do it anymore. I can’t make any more moves. I feel as if I’m at the end of my tether. And I get very, very angry sometimes.’ But, she said, ‘If you want to achieve something in life you’ve got to keep going.’

John resented the changes in his life caused by his wifes MS. He just wanted, a normal life, like everybody else.

Age at interview 55

Gender Male

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She stopped driving about that time, about five or six years ago, because she already had two crashes because her leg couldn’t move properly so she decided to stop driving. I bought a different car so we could put the wheelchair in the back of the car without having to collapse the whole thing because before I used to have to collapse the chair to put in the boot of the car. And every time we used to go out it, things like that used to create an argument. I was tired, the kids were younger then, they couldn’t help. I resented it because I was, what you had to do every time you go out shopping, visit relatives or go on holidays. Why couldn’t I live a normal life like everybody else? The thing that got me the most is not to be appreciated for what I do, I don’t mind doing it but I want a bit more appreciation and respect for what I do. Anyway it was, you know, very difficult times, very, very difficult.

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Eric and his wife both feel frustrated that they can’t have a normal physical relationship anymore. They have to approach things differently now.

Age at interview 65

Gender Male

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I wondered if you would mind talking about this. If you do, please don’t feel you have to. But I wondered if you could say something about what effect it’s all had on the kind of physically intimate side of your relationship together.

As regards that, it’s virtually non-existent. As my wife has deteriorated it’s been more and more difficult to have any physical relationship. And it’s not so easy to give somebody a cuddle or anything like that quite the same when they’re in a wheelchair. It can be done but it’s not quite the same. So, yes, it’s nothing like it was before. And my wife understands that to a degree, because these are limitations of circumstances.

And how do you feel about it?

I feel deprived. Well, my wife feels deprived as well. Again I feel frustrated in the sense you, you can’t have a normal relationship. A normal couple do things together and, it’s just natural to do these sort of things. Where now you’ve just got to cope with not being able to do it. But you just do as much as you can when you can. But it, this is why I say sort of like the caring part, being a carer is sort of 75 per cent and the husband side is 25 per cent. And, yes, yes, it’s a big, it’s a big chunk of your lifestyle taken out and you’ve got no control over it. Which happens to, with a lot of things, you know, you’ve got no control over that. And yet you could have if things were normal. It’s just you have to approach things totally differently and think of ways in which you can get something out of it. Is that done sufficiently?

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Sometimes people saw being optimistic as a way of coping with a hard life. For example, Patience said that she made a choice to be positive and to persevere in looking after her husband: ‘It’s ok until it knocks you down, down, down, then you say to yourself, ‘You will either stay there or pick yourself up.’ It’s a choice. To me, I think I made the right choice to get myself up because if I hadn’t, I don’t think my husband would be alive by now’.

See also ‘Adaptations, aids & equipment for MS‘, ‘Family life‘, ‘Being a carer‘ and ‘Maintaining a social life with MS‘.

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