Themes | Components | Illustrative quotations |
---|---|---|
Realisation | Method of finding out | P016: The neurologist said to me, “You do realise you're secondary progressive,” and I said “Yeah I've worked that one out” |
P010: When he [GP] was on the telephone to the clinic saying you know “got a patient whose been diagnosed with secondary”, that's how I found out about it only hearing him on the phone. Nobody said to me you've got secondary progressive | ||
P008: I knew over time because I couldn't walk as far as I used to, just slowed down a bit, so I knew it was sort of happening, yeah, so I was well aware of it really | ||
Understanding of how the diagnosis is made | P044: I know there's no definitive, for anyone there's no specific test that they can do but yes it would be nice to know well okay why, or what do you determine or what do you look at in a person to then decide what MS they now have? | |
Reaction | Response to the news | P005: It's devastating, it's like you're grieving, you're grieving for what you've lost. |
P030: I first of all, I panicked. (INT: Did you?) And I thought to myself “Oh my God, it's one of the worse ones”, but it isn't, I know that now, cos I was bawling, I thought “Oh my God, I'm gonna die from it” | ||
The meaning of SPMS | P024: Natural part of the disease, I didn't have a negative thought upon it, I didn't sit down and cry or anything. Just take it as what it is, can't do anything else unfortunately | |
P023: It means that my chance of disease modifying therapy is limited | ||
Reality—living with progressive disease | Symptoms | P006: Mobility was always a problem. It now is much more of a problem. |
P020: Some days tiredness overwhelms me | ||
Loss of independence | C031: Some things that she'll say to me don't make sense, when she's talking I think “Why did you say that?” | |
P038: My wife has to prepare food for me, has to prepare drinks for me because I can't do it | ||
P005: I can't get where I want to go and do what I want to do | ||
Limitations on social life | C039: We don't go out as much as we'd like together. | |
P036: I don't go out anymore I'd rather stay in. Because the later you get in the day and then getting more sluggish, I'm hurting more and I've got constant pain in my eyes and I find I can't handle it and by 9 o'clock I'm in bed | ||
Change in identity | P004: I do miss going to work because I've always worked and it's a bit strange not to go to work, and I do, I did find it hard to, well, to know what to do | |
P018: I would honestly love to have a different life so I could be there for my grandchildren | ||
Supporting oneself | C045: We follow the press and the media and get the MS Society journals and everything. So for instance we will be following up the news that there might be a drug for secondary progressive sufferers available | |
Support from others | P012: Twice a week I go to yoga with a lot of people who also have MS. And it's nice to speak and see all those people and they're very supportive and that sort of makes life a bit easier [….] it's some sort of support and you can ask other people for ideas about things and then sharing the information which helps. | |
Reality— healthcare experiences around transition | Healthcare experiences | P013: I walk up and down the corridor for so many minutes and they watch that and then I don't understand what I'm meant to do with that when I go home |
P020: You know your appointment is quite limited so you are not there to have a counselling appointment are you? You are there to be told if you need medication or I don't know, I think, yes, I suppose in a way you are just left to get on with it in some ways | ||
C028: We only tend to ring her [MS nurse] when it's important. We appreciate how busy she is and how understaffed they are but I'd say this; when she does come back to you, she gives you 100% | ||
P022: I think that when you are first diagnosed you get a lot of help, afterwards you just get left alone, nobody does anything and you have to keep going on and on saying I want this, I want this | ||
C027: He [GP] (laughs) tells me that I've got to zip my mouth when I go in there if I go in there with him [son], I'm not allowed to say anything. I will, if I see him struggling to answer a question, I will, I will sort of, er … (C028: Prompt him). C027:… prompt him or tell the doctor what is happening, but they don't like it | ||
Recognising future challenges | Living with uncertainty | C017: It's like living your life with a weight on your back all the time, we can't do, we can't plan anything |
Hoping for maintenance | P018: Well with the future I try not to think about it. I do think “Oh God, I just want to be able to walk.” | |
Hoping for improvement/cure | P024: All I want is the MS cure, but when is that going to happen? I don't think it would be in my lifetime | |
The carer relationship | P002: You can't tell them [carers] everything and they often sit there and worry and then don't like to start asking about things, just in case they upset us and… P025: It's very difficult |
C, carer; GP, general practitioner; MS, multiple sclerosis; P, person with MS.