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Multiple Sclerosis: friends & family experiences

Maintaining a social life with MS

Trying to keep a normal life going as much as possible is important both for people living with Multiple Sclerosis (MS) and for their family members. People talked to us about things they enjoyed doing, including socialising regularly with their family and friends; shopping, meeting for coffee or going to the pub, playing golf. In many cases couples continued to enjoy doing things together, either things they have always done or new interests. 

 

Paul and his wife, who is now profoundly disabled, are both passionate about watching rugby. They follow their local team to many destinations, with the active support of the club.

Paul and his wife, who is now profoundly disabled, are both passionate about watching rugby. They follow their local team to many destinations, with the active support of the club.

Age at interview: 56
Sex: Male
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One of the things we’ve got… we actively support a team and we go all over with that team. The people at the club know us. They know what we’re capable of and we’ve even been abroad to support the team even though she’s profoundly disabled. She can’t use her arms, she can’t use her legs and it’s all lifting. They help us lift her on the coach. The Chief Exec of the team helps us lift her on the coach. We go out. We’re aware of it, anything that’s on. The club is fantastic about it, providing you talk to them, and they know us.
 

Robin is very busy caring for his wife, but they find time to follow their interests in archaeology and history together through reading, watching television and taking part in organised trips.

Robin is very busy caring for his wife, but they find time to follow their interests in archaeology and history together through reading, watching television and taking part in organised trips.

Age at interview: 72
Sex: Male
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Yes, I’ve got other interests. History and archaeology is one of them. Every year we go on a coach trip with the local archaeological society. We’ve just come back from one, we went up north to Durham and Hadrian’s Wall and that’s very good because the organiser of the trip is himself disabled and he goes to a great deal of trouble to look out disabled hotels and places where we can get round in the wheelchair, pushing a wheelchair and things like that. So we’ve got a kind of symbiotic relationship there which is quite helpful. And I take a lot of history magazines and we watch Time Team and all that sort of stuff. My wife’s very keen on that too, although it hasn’t been so good lately, I fear. I think they’re scraping the barrel a bit.
Others missed being able to do things they used to do together. Kay Y sometimes goes on holiday with her friend, rather than her partner, so that one of them can be at home to visit her brother in the care home where he lives. Anthony really misses going out walking with his wife. Of course there may be restrictions on what people are able to do independently as well, because of their need or wish to spend time with their relative or friend with MS. Mike told us that ‘MS consumes more time than we would like,’ and Dave said that ‘They come first, your needs are secondary.’ Some people were surprised that they didn’t miss things they used to do. Others felt the loss of their previous activities as an unwanted limitation on their life.
 

Dave resents the withdrawal of funding from a carers scheme that allowed him to go out for a couple of hours on his own every month while his wife was taken shopping.

Dave resents the withdrawal of funding from a carers scheme that allowed him to go out for a couple of hours on his own every month while his wife was taken shopping.

Age at interview: 73
Sex: Male
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How does MS affect me? Well, your life changes, I think, when you become a carer, because you no longer think about you but about the person you’re caring for. And invariably their needs come before yours. You don’t tend to have so much of a social life, on your own, particularly now we’re in the secondary progressive stage because are we going to fall over? Funding from Crossroads etc has been withdrawn so… I used to get two hours a month where they would come in and they used to take Trisha shopping. I could then go to a carers meeting so just ten miles away and that was good. Meeting other people, getting out having a life of my own but no it’s all ended and the funding’s stopped I feel bitter about that, it wasn’t a lot but it was an acknowledgment of my role as a carer, now there’s nothing. 
 

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.

Age at interview: 49
Sex: Male
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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 …
 

Karl can’t go for a pint with people from work on the spur of the moment, but he doesn’t really miss it. He prefers it that he and his partner still, ‘hang out with each other.’

Karl can’t go for a pint with people from work on the spur of the moment, but he doesn’t really miss it. He prefers it that he and his partner still, ‘hang out with each other.’

Age at interview: 40
Sex: Male
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What sort of impact has the MS had on, on your social lives?

It does make having a social life quite tricky because I do have some friends that I see from time to time and it just makes it more of a mission to try and catch up with people. Not to say that it can’t be done, because [partner’s name] quite capable of sort of feeding herself and looking after herself on an evening if I go out, so long as everything is set up for her. So, if I was going out I would leave something cold in the fridge for her and I’d leave a plate out and a knife and fork and she’s got my phone number and she’s got other emergency phone numbers, so we do work it out. It requires a bit more notice. 

The thing that you can’t really do is, if you are at work at four o’clock and someone says “Let’s go for a pint”, it’s those sorts of things you can’t really do which, I’m older now so I don’t do that quite as much as I used to in my younger days. I don’t really miss it. From time to time it would be nice but… We used to go out a lot together to concerts and things like that and we didn’t do that for a number of years from diagnosis because we were planning weddings and buying flats and things like that. We went to a concert together, for the first time in a very long time, about two or three weeks ago. It’s the first time she’d been to a concert in a wheelchair, which we bought, and, yeah, we had a good time. So, we still manage to do those sorts of things, which is all we used to do anyway was to hang out with each other.
Mike says having time to go shopping or meet friends in the three hours for which he has care support has ‘helped in some way towards getting my identity back.’

Helping their relative keep up social contact was a common concern. David prefers to spend time in the garden these days but feels it is important for his wife to socialise. Morris puts a lot of preparation and planning into taking his dad out:
 

Morris thinks his dad doesn’t like people to see him in his wheelchair, but when they do go out with the family his dad has a good time.

Morris thinks his dad doesn’t like people to see him in his wheelchair, but when they do go out with the family his dad has a good time.

Age at interview: 35
Sex: Male
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You were talking about when your dad could go to the pub, does he; does he have any kind of social life at all now?

No he doesn’t have any social life, we try and force him so we’ll say to him would you like to go out because we have means of transport we can take him to the races, he can go any, anywhere he wants to go, we can take him but he’s a forceful, you have to force him to take part you know and I mean literally force him you have to say ‘Come on you’ve got to get up, you’ve got to go.’ Yeah I don’t think he likes to see, I don’t think he wants people to see him in a wheelchair, I think, and when he was fit and well up and running he had lots of friends and associates and colleagues and now not many, I want to say they know where he lives but they don’t go and see him, you know. Whether they’re ill or they’re busy I’d say out of all the people he used to know maybe 4% have been to see him in the last 12 years; yes not many have been to see how he’s doing. You know you’ll see them on the street and they’ll say ‘Oh how’s your dad?’ and say ‘Oh say I said hello,’ but yes they don’t, don’t go and see him. Whereas when he used to be up and running he used to speak and be in pubs for hours on end speaking to people, and his friends but yes they don’t go and see him.

Can you remember a time any, for the last few years when you have managed to take him out?

Yes.

Talk about one example of what happened, how you made it happen, what happened when you were out, how your dad liked it.

When we go out we usually go out for, we usually go out for family meals, certainly my dad’s birthday, my mum’s birthday like Fathers Day or Mothers Day, we always try and go out. so it’s kind of like he knows it’s coming and you have to still force him to go like, ‘I’m not going nowhere, no,’ so you have to force him to go but the, in general it’s good, it’s nice to see him out. we always have to go to places with disabled facilities and there’s quite a few of us usually there can be 14 of us yes so we have to go in three cars and it’s that putting the wheelchair down, getting him into the car, you know, is a difficult process sometimes you know, depending on him, you know you have to lift his legs into the car and you have to go round and back to straighten him up and then you have to put the seatbelt on. 

And then we get there and it’s the same sort of process getting him out, have to get him into the wheelchair and struggle to get him out the car. but once we’re round the table it’s different you can see he’s trying to be, you can see he’s having a good time on his face, very happy, even making jokes it’s the if he has to use the toilet when he’s out that can be a process as well depending on, we have to go and, it’s a bit like scouting football teams, we have to go and have a look at what’s available and how do you get from the table to the toilet, you know, it’s a lot of preparation to plan to go out and specific where we go but yes once we’re there it’s really good. 
Obviously, the amount of time a person has to spend on their own activities depends partly on how much time they spend caring for the person with MS. Paul Y does most of the cooking but he enjoys it and finds it ‘therapeutic.’ John Z’s wife has lived in a nursing home for several years. Although he visits her nearly every day, he has time to sing in a choir, work in his allotment and learn to play the violin. He has also just retired, after 19 years, as chair of governors at a local primary school. Eric, on the other hand, looks after his profoundly disabled wife at home, with the help of paid carers, and finds that he has little time to himself:
 

Eric gets up early, goes to bed late and is ‘on the go through the day,’ with only the occasional rest.

Eric gets up early, goes to bed late and is ‘on the go through the day,’ with only the occasional rest.

Age at interview: 65
Sex: Male
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Because I tend to find I’m up at half past 6, I don’t get to bed till 11, and I’m on the go through the day completely. Not every day. Okay, sometimes say over a weekend I will take advantage of it being say a Sunday and we’ll probably watch a film on the television, something like that. So I do get a rest like that. 

But you are, you do tend to be doing something all the time. Things like decorating, you can’t do the same, because you can’t just clear a room and get on with it. You have to get people in and do it. So additional costs in that respect. The gardening I still do, but there again my wife will come out in the garden in her power chair and give me orders what to do and what not to do. But I mean I do enjoy being out there and it’s a little bit of an escape even though my wife might be there. But she just enjoys being out in the fresh air as well. 
Even where people weren’t directly involved in day to day care giving, like Kay, it could be difficult to switch off from MS:
 

Kay sometimes feels like her life consists of home, work and visiting her brother. Even when she is out with friends, he is always at the back of her mind.

Kay sometimes feels like her life consists of home, work and visiting her brother. Even when she is out with friends, he is always at the back of her mind.

Age at interview: 38
Sex: Female
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I do try and switch off. I’m quite a sociable person and, you know, go out with friends and, and spend time with people. And I mean I love my job and I, I, you know, work probably longer than I should do at work sometimes. And sometimes, well, sometimes I feel like I’m going from home to work to [name] to home to work to [name].

But it’s always in the back of your mind, I suppose. I’m, you know, every time I get, I was at, last Tuesday, was it last Tuesday? Which day was it? Yes, it must have been. Last Tuesday, or Monday, I was at work. I went to lunch with two friends. We had, we had a nice lunch. We got up at the end to leave and I just picked, picked my phone out of my bag and it was on vibrate. And I had a voicemail message and it said, “The home” on the voicemail message and I said, “Oh, it’s the home. I’d better, I’d better phone.” So I just walked away a bit to phone back and they told me that he wasn’t very well and they’d called the GP in to have a look at him and they’re going to put him on antibiotics. 

Well, my friend, when, when I went back to my friends and they said, “Everything okay?” and I said, “Yes.” I said, “He’s, it sounds like he’s got a bit of an infection and they’re giving him antibiotics.” She said, “I could see the way your face changed when you realised who’d, who’d tried to phone you.” Because like, you know, your heart skips a beat, thinking, “Is this, is this when, are they phoning to say something awful has happened? Or are they phoning to say this is it or...?” you know. 
Caring responsibilities may mean people stop working or go part-time, or retire earlier than they might have done. This could cause mixed feelings about missing the social contact at work, but also having more time for other things. Bernard was looking forward to playing golf with a friend and spending more time with his wife, but said, ‘I shall miss teaching…I shall miss my colleagues. I enjoy teaching and I shall find it strange I’m no longer doing that’ but at the same time ‘I’ve done my bit. I’m ready now to stop’. 

Even if it’s difficult, finding time for yourself to ‘chill’ or ‘switch off’ can be important. People talked to us about finding time for exercise, hobbies, volunteering or studying. Several enjoyed swimming, walking, playing golf or watching sports. Apart from rugby, Paul Z loves to ‘play with old cars.’ Jeff is active in his local church and Paul Y maintains some professional work, unpaid, in two accountancy associations. He never stays away from home for more than one night, though, and phones his wife morning and evening when he is away. Mully and her husband Charles have a busy social life in their village and are both active in a variety of volunteer roles. Although Eric’s wife can’t garden anymore, she joins him outdoors and tells him what to do.
 

Paul enjoys cricket and going out for meals, as well as his volunteer work.

Paul enjoys cricket and going out for meals, as well as his volunteer work.

Age at interview: 76
Sex: Male
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Oh, God, I’m quite busy professionally. I’ve not found a way of doing anything that pays me any money but I’m a volunteer. I’m an accountant by profession and I’ve got two accountancy associations and for a long time I’ve been a volunteer for those and I serve on their council and things like that. And for one of them, I’m a pension trustee and I do quite a lot of work in that area, which involves me going up town, staying overnight in a hotel and then spending the next day on trustee work and that means I have to leave my wife for that one night but we can cope with that. I mean I ring her sort of morning and evening and see how she is and so on and so forth but she, she can cope with that. But I wouldn’t be comfortable leaving her for more than one night really and once a twice a year I go away, I’m asked to attend conferences, accountancy conferences and in different parts of the country and I take her with me. So I can keep an eye on her to some extent then and other wives that are at the conference, they look after her as well and are quite happy to push the wheelchair around and so on and so forth. So we get by.

The other things that we do, I still, all my life I’ve played cricket and I still play cricket but not very often now and not very well now but I formed my own cricket club fifty, just over fifty years ago and I’ve played every season since but I only play once or twice a year now. So it’s, you know, virtually stopped. But I, I am a member of the MCC so I go up to Lords and I watch cricket when I can. I think I managed to get there about eight times this year, which is the most I think I’ve ever managed. 

Also going to nice restaurants, we like that. I do it more than my wife does because in my trustee work, I always take the trustees out to a nice restaurant and she’s not involved with that but if she hears I’ve been to a nice restaurant, I then have to take her to that restaurant some other time [laughs]. 
 

Jeff is a senior steward in the Methodist church. Although his term of office is about to expire, there’s no one to replace him so he’s going to do it for one more year.

Jeff is a senior steward in the Methodist church. Although his term of office is about to expire, there’s no one to replace him so he’s going to do it for one more year.

Age at interview: 62
Sex: Male
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And do you have any opportunities now for any of your own activities or interests outside of the house?

Well, in, in some respects I suppose my diary is actually, now you’re retired, I hear everybody say this, is fuller than it was when you’re actually working. I think I mentioned earlier that our church, and people in the church, have been very, very supportive with my wife and myself through these times. And I’ve taken a more responsible post within the church there. So I’m kept quite busy and active there. But it’s sort of mutual support.

Say a bit about what that post involves?

Right. I am a senior steward in the Methodist church. So I’m responsible for quite a large team of stewards. There’s about, let me think, eleven at present, going up to fourteen next year. So I will organise rotas for duties to make sure everything is ready for each service in church, and visiting preachers, ministers are welcomed, met, everything is ready, the organist knows what’s happening, and they know what the readings are. And help to organise other events in the church, other special activities that take place in the buildings there. So, and a wider responsibility in, in the wider region as well. In the Methodist Church we call it a circuit, so it will encompass a large part of, of, of our county. So there’s a commitment to the other churches there as well. And I’ve served three years there now. Should have given up this year, but as in some things nobody seems to volunteer to replace you. So I said I’ll do it for one more year, and that’s it. Because I think now I need to again just give that little bit extra time now. The progression has slowed down in the illness of late. And as long as we’re careful now not to overexert my wife doing certain activities or get overtired. So, but I think it’s one more year and it’s, will be almost full commitment to her.
 

Kate doesn’t feel that she has much time for anything except household chores, but she enjoys gardening, decorating and sewing.

Kate doesn’t feel that she has much time for anything except household chores, but she enjoys gardening, decorating and sewing.

Age at interview: 75
Sex: Female
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When you’re not gardening, medication-giving, everything else that you’ve talked about as forming your life, are there things that you can do for your own pleasure and relaxation?

Not a lot. I, because I’m a keen, we’re both, both keen gardeners actually. So that is a relaxation. In fact while I was waiting to pick you up today I was trying to read a book I’ve been trying to read now for, let me see, about a month. Because I don’t very often, I mean I used to be a great reader. Now I don’t. I don’t have, I have more time now than I used to have obviously, but time just goes. 

I like to sew. I do, do some sewing, gardening. I used to walk a lot, but then we don’t walk as much now because I have to get, the buggy has to come with us. So, so we only, we only go, we can’t go to the nice places we used to go because the buggy doesn’t go on nice places. So then you think, “Oh” you know. 

But occasionally, there again, occasionally I, I mean we have, we have a very nice life. I and my, my sister and brother-in-law, we’ll, we’ll, we’ll walk from [place name] to, to [place name], which is just down here. My brother-in-law will pick up Bernard and we’ll go for a meal to, on the beach there. So we’ll walk across the top of the cliffs. 

And, and since, and, and since we moved here I don’t walk as much because I, we lived in a very isolated spot and it was nice. And I, I, we had a dog, who unfortunately died, and I used to have to get out to walk with him. So that makes you walk. And much as I’d like another dog, we can’t really have one. Too much now. We’re too old, it wouldn’t be fair, and too much now, another dog. So that’s another chip off your life, one thing less. 

But, no, I don’t consider really, I like gardening and I don’t consider it a chore. And I do all the decorating and that takes time. I’m always running round with a paintbrush. So it’s one of those things. And I like doing that actually. And I use the computer a bit, not a lot. I speak to the girls on Skype. I’m not a great computer person. I don’t spend hours on the computer. I just go in to websites when I need them. You know, I don’t spend hours on the computer like some people. That’s a bit too inactive for me, boring. I don’t know how people spend the time on it.
(Also see ‘Work’ and ‘Normality and optimism’).

Last reviewed March 2020.
Last updated July 2018.

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