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She met her husband only six months before becoming very ill and he has become her carer.
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No. We were only girlfriend and boyfriend when this all started. So, he's [laughs] he's been my rock really. I don't know what I would have done without him really. He is good, so.
So, when you got ill, he moved in to, to support and to help you.
Yeah. Yeah.
That's nice.
It is, yes [laughs]. Especially when we met on line as well. Bit odd, so yeah [laughs].
So your relationship, in a way, became kind of stronger?
I wouldn't say it was the same as a normal, I wouldn't call it a normal relationship but it is… Difficult to explain really. He, because I'm different, I'm not the same person I used to be. Nowhere near the same person I used to be. I've had a lot of my independence taken away.
He's been there, I don't like putting on him though, although you have to sometimes, I'm stubborn [laughs]. I try to do things and then he lets me go so far, and then he'll take over [laughs].
He made a mistake one day, when, just after he moved in, actually, he said, 'Would you like me to cut your dinner up for you?' I said, 'I don't think so.' [laughs]. And he said, 'Okay, I won't be asking that again.' But I suppose it is because I am so stubborn that I do try to do more than I'm supposed to. I must admit that. I don't know what I'd do without him.
I suppose I am lucky, I know I'm lucky, I am lucky that I found him and he found me, at the time we did, because I don't know what I'd have done otherwise, I really don't. I was a single parent anyway, when I first met him, so, which is hard enough when you're able bodied, but then, when you've got a lot of illnesses, it piles on the stress even more. And then, eventually, I couldn't drive either. That was six years ago, I gave up driving, because I couldn't do it anymore. And that really hurt. That really affected me badly.
So, you can't drive now.
I haven't been able to drive for six and a half years. And I hate it. I really hate it. Can't stand it. I was very, very independent, very independent, now I have to sit there and say, 'Oh, would you mind taking me here? Would you mind taking me there?' And then you feel bad because he's having to stop what he's doing all the time, and take me here and there. He says, 'Yeah, but I don't mind.' And I say, 'Yeah, but I do.' But there's no other way round it. So. |
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Her son does not mind going into town with her when she is using her scooter. She says that she 'plays' football with her son in her scooter.
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Can you tell me a little bit about your relationship with your son in term of how you have managed that, because you were, you started having problems when he was about six years old?
Yeah. Well, I've been having, I've been taking pills for quite a long time, since just before he was born, actually. So he's, sort of, grown up with his mum taking a lot of pills, and pills being in the house but not, obviously, within his reach but, you get your funny thing that happen with them, when he was at infants school, they had a special man that came round and they tell them about drugs and things and they say to them, 'Does anybody know anybody that takes drugs?'
So, up his hand went, 'My mum takes drugs.' No [laughs]. So when I went in there that evening, after school, to the show, the parents were shown, they were talking about this little boy who shot his hand up and said, 'Yes, my mum's on drugs.' And I knew, I knew it was him, I knew it was straight away. I said, 'Yes, that was my son, wasn't it?' And I said his name and they said, 'Yes.' I said, 'It's because I'm ill,' [laughs]. 'I don't take recreational drugs,' [laughs]. But he was so proud of it that he wanted to tell all about it [laugh].
He's a very placid child. He's very caring. I'm very lucky because I know a lot of teenagers aren't like that, I mean, even though he is a teenager now, he is, he has his moments, like most of them, but, on the whole, he's very caring and he does help his dad out, does help me out.
A friend of his said, a couple of months back, to him, 'Oh, you're always doing things for your mum and dad.' And he said, 'Well, it's, I, it's not because I don't want to.' He said, 'My mum's ill.' He said. 'You know my mum's, she's ill.' 'Yeah, but you shouldn't be doing this.' He said, 'If I didn't want to do it, I wouldn't do it.' He said, 'I love my mum and I'll do for her what I want to do for her.'
And I am a very lucky woman. It could have been total opposite. He doesn't go without though, like I said before [laughs]. I have played football with my scooter before in the park, hysterically funny. I've run over him with my scooter, because he stopped dead in front of me and I ran over his foot, one day [laughs].
And he's not embarrassed, this is what got me, actually, he's not embarrassed to be seen with me and my scooter, or with my walking stick down the town, he'll be there by my side, he won't, sort of, wander off and say, 'Don't want, don't want my friends or anybody to know.' But all of his friends know he's brilliant. He's a rock, he really is.
I don't know where I'd be without him.
Well, he's fourteen, he'll be fourteen at the end of the month, so.
Okay.
He's at the age where he's, sort of, getting an attitude as well, but not much, actually, we, I mean to us it's a lot, but compared to a lot of other children, it's not [laughs]. He goes, he has tennis coaching every Tuesday night, and he still goes out and does things with his friends as well. In summer he's always off out, go, playing tennis in the outdoor tennis courts, he plays rugby, football, everything. So he doesn't miss out on going places with his friends because of it, and that's only because I've made sure he doesn't. Otherwise, I mean, there have been times where I've, we've had to say to him, 'You are going out. You are going to go out with your friends.' Because he's spent too much time indoors, at home, worrying. He's had to put up with a lot from a very young age, I suppose, so it comes, it's all, sort of, it's normal to him, it, sort of, comes automatically to him, it's a bit, other kids don't have to cope with things like this. |
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She doesn't visits the RA websites as much as she used to but has made good friends, in particular one lady with whom she still keeps in touch.
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I've been on websites to do with rheumatoid arthritis in the past and I have made friends on some of those. I don't actually go on line as much as I used to, anyway. At first, you want to know everything about everything when you're first diagnosed, I suppose. And as it goes on you, sort of, I've kept in touch with one of them and she lives at [place name]. And, we've not actually met, personally, we've spoken to each other on line and on the telephone, as well, and we're very close although we've never met. But she's brilliant. She's all full of beans, always full of beans, even though she's in a lot of pain herself.
But I think that's the only really, she was the only, really one, I suppose, that I cliqued with. You sort of clique with some people, you don't with others, do you?
But it was only one particular website that I went on. I did try others but they were all, sort of, cliquey, you get groups that are a bit cliquey and they.
Yeah.
They don't let people in but she was brilliant. She actually started using the website after I did so she, you sort of, I started talking to her because you do with other people with, sort of, the same problems, you all, sort of, sit down and it's like getting everybody into a room I suppose.
And sitting them down and talking to each other but you do it via the computer.
And why do you think you clique with her?
I don't know, I think we've both got the same sense of humour, actually, [laughs] I've got quite a wicked sense of humour when I get going. No, but she's, she's always laughing.
Has she got, is she married, has she got children?
She's married but her children have left home now, recently. So… But, she's not as, she's not got to the stage I'm at, thankfully, for her, she isn't.
But she does have her other problems herself so it's, sort of, six of one, half a dozen on the other but [sniffs] I don't go, as I said, I don't go on line as often as I did now but we used, I got a Christmas card from her, asking me how I was, and I sent her one back. And then she e-mailed me or rang me, so, if I'm, I mean, at one stage I was always on line in the evening, after [son] had gone to bed at night.
But I used to talk to my friends but as I've, sort of, got worse and worse.
You just haven't got the energy. You don't want to be sitting at a computer desk. But she's been really good, she really has. I do have other friends, and they are good. When I'm really bad, they, they do come and make sure my husband's okay and son's okay. Not that they're not capable, because they are, but they come over and make sure I'm all right as well. |
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Once a week she goes to a craft club and she loves it. She has made new friends and says that it has helped her more than counselling.
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Some days you just feel like not getting out of bed and not doing anything, and it's got to me and I can't do anything about it, but then other days I wake up and you're in as much pain and you think, 'No, I'm not going to let it get to me today.' I go to an, an afternoon group on a Tuesday afternoon with a lot of people that have got problems elsewhere, and we do craft things. I, actually, make my own cards as well, so I go, I go just for two hours on a Tuesday afternoon. Just gives my husband a break from me, and me a break from him, really, for two hours. And it's, I, do, I must admit, I do enjoy it. He doesn't because he decides to do the shop, weekly shopping then [laughs] so, the poor man doesn't get much of a break [laughs].
But I, there's not much else I can do, I've looked into hobbies and things I could do, and it's, it's difficult when it's your neck and your hands. I can't actually straighten my arms properly at my elbows. And that went a couple of years ago, so it's very difficult to do things.
They're all like-minded people, they're brilliant. Most of them, most of them are women.
And we have a good laugh. Basically, we're, sort of, card making, doing, doing craft things basically.
Okay.
And I really look forward to it, but in the school holidays it isn't on and I must admit, when it isn't on, I do miss them. I miss not going out for those two hours.
And who runs this group? The council? Is it a voluntary organisation?
It's NHS.
Yeah. They are, I mean they're, there's one woman that runs it and another lady that helps and they, they are really good. And they always keep people really happy. Though, it's funny because they, everybody make a fuss of everybody's birthdays as well, you know, if it's your birthday, you bring in a cake and it's nice, just before Christmas we had, sort of, mince pies and, [laughs] and birthday cake, sorry, right. No, but they are nice people, and I really do enjoy it.
Everybody, everybody if, even if you are ill, you do miss is as well, if you don't go for a week. Feel like, 'Oh no, I really want to be there.'
And I have made quite a few friends as well from it, which is good.
And how did you got to know about this group?
It was through my doctor's surgery. Because they're, actually, are in the same town where I live, so. But, I mean, I only go once a week anyway, it's only, sort of, on Tuesday afternoon and that's it. We do all sorts of things throughout the year.
In fact, in the next couple of weeks they're getting me to teach somebody else to, a group of them how to do something, different cards that they all want to learn how to make, so they've roped me in to doing it instead [laughs]. How it'll turn out, I don't know [laughs].
So attending this group helps?
Yes, it does. Yeah, it does. And it is worth, if, if you are very down or very low and you are at home most of the time, it is worth going to your GP and talking to them about it. I did have counselling, to start with, and that didn't really work, so my GP said, 'Well, perhaps something else will.' So, he made a few phone calls and, and that was two years ago nearly, yeah, I've been going there nearly two years now. It is worth talking to your GP if you're really not coping, mentally. |
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She started on B-cell therapy rituximab in October 2007. Previously she has tried two anti-TNF drugs. She has noticed some improvement in her condition since starting on rituximab.
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Then, because those weren't working on their own, they tried me with the Humira injections. They did work for a little while but then, after a while, they just didn't seem to do very much so.
Then they changed then to the etanercept for six months, and they did the trial on that for six months, and, to start with, my hands and my knees started going down. I wasn't having as many problems with my neck but then, unfortunately, that went the same way as the Humira and they had to stop that as well. And then in November of last year, they decided to put me on… I can't remember.
Rituximab.
Sorry. Yeah. Rituximab infusions. They started those at the end of October, beginning of November, about two months ago it started to work. My hands started to go down, I wasn't having any problems with my neck.
Yeah. Like it's mainly in my hands and my knee, really, that get inflamed. Every morning, when I wake up, my hands, well, you couldn't move, I couldn't move my knuckles, to start with. Mind you, they are usually a little bit stiff in the morning even though this has started to work. It's a lot better than it was. But as I said, it's started to go back down. But my neck, when it flares I, I can't move it at all, it, it, sort of, goes into my shoulder and my neck so I have to take diazepam to try and calm that down, on top of everything else, but that hasn't actually flared since I've been on rituximab.
They said they were hoping it would work better because it works in a different way to the humira and the etanercept so they were hoping that this one would, I, because it coats the right B cells, or whatever, cells, but hopefully, over a longer period. It might work better than the other ones. They said it wouldn't perform miracles, but it could make my life a lot more bearable with it. I suppose I didn't really get my hopes up too high because I had with the Humira, originally, so. But it did, when it did start to work it was good. I was waking up in the morning and I could move my fingers, before I couldn't for a few hours, and my neck, my neck was fine as well.
But I have problems with my ankles, they start to swell as well now, so they're sort of a bit. Painful every now and again. But that has lessened, slightly, as well, since they've put me on the rituximab.
If you have to, kind of, summarise it, would you say that you have been noticing some improvement.
Yeah. Definitely. Yeah.
Since you were put on rituximab?
Yeah.
Anything that hasn't improved that has remained the same?
My hip. My right hip, actually, that's, that has actually got worse but the rest of my joints have actually got better, even though my inflammation levels are going back up, it's not as bad as it was when they first put me on rituximab, so.
They do a follow-up after three months, that's why I'm seeing them at the end of January (2008) so, because it will be three months, and they, basically, see how you've been getting on. I have to have pre-clinic bloods done as well so they know exactly what's going on the week before I have the appointment, as well, so they've got all the information they need there for it.
Okay, and you have had regular blood tests?
Yes. Every two weeks, for the last two years. |
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Says that her care team at the anti-TNF clinic has prepared her for the possibility that rituximab might not work and that she too has more 'realistic' expectations.
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But they have said that if the ritux., the, this one, the.
Rituximab
Rituximab, yeah. Doesn't work then it will get the definite guinea pig stage. And there are other things.
What?
There are other things that are on, sort of, trial, totally that they might be able to try me on, but they haven't elaborated on that. Obviously, because I've not been on this one for very long, they want to see how this goes and then, if not, then discuss something else. But I have said if this doesn't work then, then I would be, at the moment, I'd be willing to try something else but, sometimes, some days you just think, 'Why doesn't everybody just go away and leave me alone?' But other days, you think, 'Well, yeah, it's got to be worth it' [laughs].
So they have prepared you for the possibility that it might not work?
Yes. Yes, they do. Yeah, they, they do that, as well, yeah. I'm usually a pessimist but with Humira I was very optimistic and, unfortunately, it didn't work for me and I came down to earth with rather a large bump with that one, but I, by the time they put me on to the etanercept I was, 'Well, if it works, brilliant, if it doesn't, so what? I've tried it.' So, that was why I tried this one as well. So, it's worth trying it. |
