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Christine

Age at interview: 50
Brief Outline: Christine’s friend was diagnosed with MS sometime before telling her about it. They have maintained a close relationship, while living apart, though they have both struggled to come to terms with the disabilities that the illness brings.
Background: Christine, age 50, works as a medical secretary. She is Caribbean British, single, with no children.

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Christine’s friend was diagnosed with MS in the year she met him 2005, but didn’t tell her about it until 2009. She suspected that something was wrong because she observed his difficulties with moving around. He told her over dinner one night that this was due to MS. Hearing this was a shock to Christine, knowing how much MS had affected other friends, and considering what it might mean for this closer relationship. 

Christine’s initial reaction was to try and contain her feelings, despite being stunned and dazed at the news, and to think about what she would need to do to help him, in the immediate and longer term future. They talked together about the practicalities of anticipating and managing likely problems and difficulties, tending to avoid focusing on the emotional impact of the diagnosis on them both.

Dealing with the first year was very hard. Christine observed that with the onset and progress of MS, her friend found it hard to come to terms with being less able. She, too, felt a struggle in coming to terms with the fact that her boyfriend was disabled. His confrontational and argumentative behaviour, towards her and others, led to conflict and to Christine becoming upset on occasions, to the extent that her friends encouraged her to break up with him. She considered this carefully over a two month period but decided to stay in the relationship.

When he started to get worse, and to need her help more, her friend asked Christine to think about becoming a live-in carer but they have not been able to agree on this and, at the time of interview, still live apart. They arranged that she would visit every couple of weeks to help with cleaning, shopping and occasional cooking. Occasionally he has asked her to help him with foot massage and a bit of stretching, but doesn’t really want help and encouragement with physiotherapy exercises or with getting information about research and treatment. Christine thinks this is because he wants to deal with MS in his own time and in his own way.

At the time of interview Christine’s friend is in hospital, admitted for treatment of yet another urinary tract infection (3 episodes in 4 weeks). He reports that doctors want to get him to walk again, using a combination of drug treatment and physiotherapy. Christine thinks is good news because it appears that he has been accepting too readily, in her view, that he would be soon confined to a wheelchair. Overall, Christine has a more optimistic outlook for the possibilities of effective self-management and for the range of help available to people with MS. 
 

Christine asked her friend directly if he ever thought about committing suicide, because he seems to be ‘on the depressive side.’ He said that he ‘wouldn’t want to do that,’ but she is not so sure that he wouldn’t.

Christine asked her friend directly if he ever thought about committing suicide, because he seems to be ‘on the depressive side.’ He said that he ‘wouldn’t want to do that,’ but she is not so sure that he wouldn’t.

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And when I’ve been with him, when we’ve actually been listening to music, the music has been on the morbid side, I would say, and I have asked him, when he was at his lowest moments whether he whether he would actually consider suicide and he said, “No, I don’t think I’d, you know, want to do that.” But there are times when I sort of seriously wonder because he’s, he’s sort of always sort of been on the depressive side anyway really. And I do understand about that myself because I used to be on the depressive side myself. I mean I have had, not exactly clinical depression, but I have had I’ve had one breakdown myself. It was ten years ago but I’ve had one.
 

Christine says she has never felt alone in dealing with MS because there are many sources of information and help.

Christine says she has never felt alone in dealing with MS because there are many sources of information and help.

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Just find as much information as possible. Read everything that there is. Try and talk to someone who has it, who has MS. Talk to, definitely a friend who supports somebody with MS. Just try not to worry too much and there is so much that is being done for MS sufferers and they will live a long time. MS sufferers do live a long time and they are lucid and just ride out the fact that occasionally, they will be tetchy because it is very frustrating if you are, one year, you could walk and the next year you find that you can’t or you can’t use your hands in the same way. Writing may be difficult but I, people who have MS are definitely in much better shape than they were twenty years ago. There is so much which is done for it and it is and it is a disease or an illness which people are finding ways in which to cope with it. People do cope better with MS than they ever have before. It has so much support and there’s so many people who are willing to help you out. I mean you don’t, I with this I’ve never felt that I was actually alone dealing it, never, not for one day. There’s always been somebody who has it or somebody who knows somebody who has it and there are so much you can, so much so many places you can go to find information and so much help you can get, so much help.
 

Christine noticed that her boyfriend was struggling to run for a bus when they went out for a meal. He told her that he had been diagnosed with MS some time before.

Christine noticed that her boyfriend was struggling to run for a bus when they went out for a meal. He told her that he had been diagnosed with MS some time before.

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Well, the thing is my friend was actually diagnosed with MS about the year that I met him but he didn’t actually tell me about it until two years ago. And I had a feeling that something was wrong a little prior to that because of the way in which he was moving. We’d agreed to meet and go to a pub for dinner and it was Friday, I thought it’d be nice to relax and have a drink but we actually had to run to catch a bus to get to the pub and he seemed to be struggling quite a bit. He’s a little taller than me so I thought, “Okay. Well, maybe as a tall person, maybe he can’t maybe run so fast.” Or maybe he was tired or something but he seemed to really be struggling to move. We had to try and run for this bus and I sort of just, you know, did my usual thing and ran along and caught it but I had to tell the bus driver to wait quite a few seconds for him to turn up. And when I looked behind me I saw that he seemed to be making a hop and a skip kind of movement and really sort of struggle to move. Running, it wasn’t a run really, it was really a sort of a hop and his leg was dragging and I thought, “Okay. Something is up here.” But I remember sort of saying to him on the bus, “Are you okay? You seemed to be.” I said, “You seemed to be struggling, you know, to run. That wasn’t really a run was it.”

He says, “No, I’m okay, you know. It’s just that I’ve got, you know, my right leg is playing up. It has been for a few weeks anyway.” And so I said, “Oh, okay.” 

Then we he bought me a drink, when we got to the pub, bought me a drink and we sat down and he ordered the food and it turned up and I’d had a few sips of wine and he’d had a few sips of what he had to drink and he said, “I need to talk to you about something.” And I said, “Okay.” And he said, “Did you notice about the way I was moving, did you notice something?” I said, “Yeah, I you seemed to be struggling to be running. I thought.” He said, “Yeah, do you do you have any idea what it could be? Any idea of...” I thought, “Well.” And I thought, and I had this sort of feeling of fear, you know, in which you have a bit of a tight knot in your stomach thinking, “Oh my goodness. Is it, what kind of, what’s he going to tell me? What’s up with him? What’s wrong?” Because you always have that knotting fear in your stomach when somebody is about to tell you news which is going to be of great importance to them and affects you as well. And I was trying to sort of get past this knot and I thought, I was aware that I’d stopped eating what I, I remember eating, I remember what I was eating, a very good lamb shank, which seemed to sort of lose its taste and I remember sort of holding my knife and fork, you know, poised as if like, what are you going to tell me? I think I actually said that, “What are you going to tell me?” I said, “Have you, what what’s up? What’s the matter? Have you got motor neurone disease?” He said, “That’s very good. It’s quite close. I’ve got Multiple Sclerosis.” 
 

Christine accepts that the sexual part of their relationship is probably over, but she appreciates that her boyfriend misses it.

Christine accepts that the sexual part of their relationship is probably over, but she appreciates that her boyfriend misses it.

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He’s very affectionate but in terms of the sexual aspect of the relationship it’s, that has dwindled quite a few months ago and I accepted that it would. It’s much harder for him. It’s much more difficult for him but I just accepted that it really would be coming to a natural halt anyway. I just thought, well, because of the amount of, I just thought it was, I just thought it was just an inevitability, as it is with any illness I would say, with a lot of illnesses where, you know, the limbs don’t work as well, especially the lower limbs don’t work as well. And it, it sort of just takes you enough energy to sort of just get from the chair to the kitchen and move around. 

He’s at that stage now where he physically just getting around from the bedroom to the kitchen, making a meal and then sort of getting to the computer maybe, to do a bit of work and getting up to answer the door, is just going to wear him out. So he’s more easily tired and I’ve just sort of come to terms with it, you know. I just sort of sit beside him on the sofa, hold his hand and then I’ll sort of get up and say, “Okay, well, let me sort of put the kettle on for a cup of tea and let me sort of cook the meal, you know, because I know you’re too tired to do it and just sort of lay there for a moment, just lay there or go to bed or sleep, whatever you need to do. I’ll just sort of sit and make you comfortable.” 

So those times when before we’d would be more affectionate with each other, I just make him comfortable and I’m quite happy to do that. The fact that he’s still being able to talk to me I think is much more important than anything of a physical nature, much more important but I appreciate that that he just sort of misses that and mentions it so I’ll just sort of just play along but I’ll just sort of say, “Okay. That’s fine but, you know, you do all the flirting, make all the jokes you want.” But it, you know, it’s going to be less of an issue, okay. Just let’s sort of just sort of maybe sort of deal with that, you know, tomorrow or whatever it is.” But rather than sort of say, you know, “It’s finished. It’s the end,” which I don’t think is the right kind of thing to say, I’ll say, “Okay, well, you know, maybe in a few months. Maybe next week or whatever it is.” Maybe, you know, maybe things might change but I don’t think that they will really in terms of, you know, the sex part of the relationship. I think that that’s over. But that’s okay.
 

Christine is not looking forward to a time when her friend might not be able to speak so well because talking to each other is really important to her.

Christine is not looking forward to a time when her friend might not be able to speak so well because talking to each other is really important to her.

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I want to be around. I want to be around. I’m not going to run off anywhere. When his health actually does deteriorate, I’ll just sort of take it as it comes. His health has been deteriorating anyway. I must admit, the time when his speech will start to slur is not one I’m looking forward to because I like him talking to me. The fact that he’s talking always is essential because he’s alert to everything around him and the fact that he’s still able to, the fact that he has really good conversations with everybody is what keeps people flocking to him, you see. But that will be very hard for me but I don’t see myself going anywhere if he his speech isn’t so succinct but I’m not looking forward to the time when he’ll stop, when he won’t be able to speak. That will be hard. That will be hard, harder than the disability actually. I can come to terms with that.
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