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. 
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.
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:
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:
Even where people weren’t directly involved in day to day care giving, like Kay, it could be difficult to switch off from MS:
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.
(Also see ‘Work’ and ‘Normality and optimism’).

Last reviewed July 2018.
Last updated July 2018.
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