Interview 20

Age at interview: 31

Age at diagnosis: 30

Brief Outline:

Diagnosed September 2002 after few months of joint swelling/pain which was quite debilitating. Steroid injections helped and now pain and stiffness under control with Sulphasalazine (6 x 500mg/day) and Meloxicam (7.5mg/day). Life returned to fairly normal

Background:

Cleaner, married with one daughter and 2 step-children.

The urgent referral to the rheumatologist worried her but getting a diagnosis was a relief.

Well you know I think by the time I'd gone back to him, I'd com, I had real, you know, I think it, it was a weeks, a matter of weeks, and I had really gone downhill. Then he, he you know, he did say, 'Well I think it is and I'm gonna to, I going to refer you straight to the, the hospital, you know, the local hospital that does it. And you can, you know we'll get you in there, you know, urgent referral.' And that's a bit, 'oooh' You know, but by that stage I just want to know what it was, you know. Everything goes through your mind is it, is it you know. I don't think it was cancer. I didn't, no I didn't, yeah I didn't think it was life threatening. I just wanted to know what it was. And I couldn't imagine you know, me having you know rheumatoid arthritis. But I have [laughs].

I, you know, and I went to see Dr [X] and he's my god [laughs]. He's, he was brilliant. He, you know, I'd like I said, I was at my last, I thought this is it, my life's over. And I went to see him and he, he explained everything. He, you know, everything, everything, everything you might not understand, everything, he said, but just you know, if you want to know anything, they give you loads of information. 

But I think, I don't think you; you just don't take it in. You're so relieved that's it's not you, you know, you, you're relieved that they've diagnosed something, it's not in the head kind of thing. You know, you're not, you're not, you're not going loopy, there is something wrong with you. Well, he just you know told me what could hap, you know, not what could happen in, in a couple of years time. He just told me that, what's was gonna happen to me then, you know. And after being prodded and you know, various blood tests, you know, it came down to, I did have rheumatoid arthritis, so. 

Was relieved to receive the diagnosis and discover that the problem wasn't all in her head....

They give you loads of information. But I think, I don't think you, you just don't take it in. You're so relieved that's it's not you, you know, you, you're relieved that they've diagnosed something, it's not in the head kind of thing. You know, you're not, you're not, you're not going loopy, there is something wrong with you. Well, he just you know told me what could hap, you know, not what could happen in, in a couple of years time. He just told me that, what's was gonna happen to me then, you know. And after being prodded and you know, various blood tests, you know, it came down to, I did have rheumatoid arthritis, so. 

Yeah. It, yeah to be told that it's not me. It is me but its, you know, it's something that could be dealt with. I think it was just the fear of what's going to happen. Am I going to be like this, you know, forever? But, once they, that you know, once you're given the, the, the prescription and the drugs that they're gonna put you on and I did have steroids. They did give me two injections, two steroids injections. And I felt better straight away knowing that there, there was someone out there who's gonna help me, who's gonna, you know, who's tell me, you know, who can, who could, you can give, you know, you couldn't say to me, 'right you're gonna be fine tomorrow', you know. He, he actually said to me, you know, the consultant said to me, 'Right this is it you're, this could happen. This might happen.' So I think it's more, yeah I did, I just felt a lot better. 

Was alarmed at the change in an acquaintance who had been taking steroids, and relieved when her...

No, well I knew one other person who that I knew and I'd seen her. This is going back you know, way before, before I had it or even knew about it, and I remember seeing her and you know, she just wasn't, she was really mad and you know. She was just completely nutty, but good nutty, you know and she was just and I remember seeing her in a car park. She was not that person. She was bloated, you know 'cos of the and she told me at that, I had spoken to her, that, that was the steroids. It was the steroids that has done it to her.

And I can just, I just remember, you know seeing her and thinking, 'Oh my god'. You know the last time I saw you was probably six months ago, a year ago and you, she was not that person. The fat didn't help, that didn't help with me when I, you know when they said to you, it could be, 'cos even though I thought 'No that's a you know, I'll have deformed hands and you know kind of thing. And then I remember seeing her and I thought, no, I can't, I'm, you know, I, how I was, is how I saw her. You know the bloated, the, she couldn't move properly. 

She was holding on, you know holding on to a supermarket trolley and just you know and like that really did stick into my mind and I probably saw her six months after that. She looked a lot better. She was, you know, slimmer, the bloating had gone. She wasn't back to her normal, you know, you wouldn't, you know right back to her normal self, and I prob, I saw her ooh, not long after I got diagnosed with it, and she gave me hope [laugh]. She was totally different, totally different. She was back to the person, you know, that was before, that I knew before, you know, that could, you know that completely nutty person.

Tells how it affected her daughter, age 9, and how she explained it wasn't life threatening.

Oh yeah. I didn't have the, didn't have the patience, 'cos all I wanted to do was just curl up in a ball somewhere and just wait it out kind of thing. I wanted to hibernate, go in, just go to sleep and I'd wake up and I'd feel better. So she, yeah, it, it did affect her and it definitely, you know, affected my husband. I mean I was lucky in the fact that they were both hands, no they are both hands on so, but it did, yeah, it did, it did affect how I was and she was, she, I found that she was more tearier as well because I'd be just so frustrated that I couldn't do anything. 

So yeah it did. It did affect her. But you know, I mean now that she, I have sat down and spoken to her and it's not something that's going to kill me, you know, she knows. I think that's, that's, that was a lot of it as well, is it, you know, 'cos you it all goes through your head and I didn't think it was going to kill me but it, you know, I, it wasn't good.

But no, now that she realises now that, you know, I don't think she takes much notice of it any more, because I don't. Yeah, that's, that's probably it. She, 'cos I, because I'm not, you know, that bothered about it any more it doesn't bother her. But at the time it did. At the time it was, you know, it was quite, she'd want to come and give me a cuddle and I, you know I'd, 'Sit next to me by all means but I can't cuddle you.'  So, stupid things like I'd kiss, give her a kiss because my jaw hurt. So that'

So did you explain to her at the time, you know, anything?

Yes. 'Cos she was old enough to re, you know, 'cos she was old enough to know I mean I have stepchildren as well. No I, no I don't think we really did. I don't think I actually sat down there and really spoke to her. I mean, I remember saying to her, you know, she was in tears and, you know, 'Mummy, mummy' kind of thing and I do remember saying to her, 'It's going to be, you know, it's going to be difficult and there's some things that I'm not going to be able to do and, you know, I am going to lose my patience, you know, quicker but it's not you.' You know, and then when you find out what it is definite, you find out what it is you think, you've got that like, this is what it is.

But I don't think we ever actually, children respond how you are. Because she could see I was feeling better, looking better, it helped her. It was just, you know, that, it was just that main thing, the main, 'I'm not going anywhere, [daughter's name]. You know, I'm not going to die, I'm not, this is not going to kill me it's just going to be really uncomfortable.' And that reassured her. 

She was hiding the symptoms of RA from friends and family and they were shocked on realising its...

I didn't let anyone know how bad it was. You put a front on. It wasn't until I got indoors that I'd do the little weeping and the wailing kind of thing [laughs]. So yeah, I don't, I don't think they really knew, like, as I say, my mum didn't know until we'd gone to [the] Zoo, how bad I was. And she was really, really shocked. 'Cos I just didn't tell, you know, I'd just got on with it. Struggled, I didn't, you know, I didn't cope with it, I struggled. But as far as everyone else was aware it wasn't as bad as, you know, obviously for [daughter's name] and my husband, they didn't really know how bad it was. So I did cope with, I could go to Hollywood, couldn't I? I could be in Hollywood. But no, I did, I did really, yeah, yeah, I did cover it. 

I think one instance we'd gone to, we'd gone out with my brother-in-law and all our families and I was, just sat down normally. I was sat in a club kind of thing, you know, sat down having a drink and it was just like, 'I've got to go to the toilet' and it took me about 5 minutes, to get up, to get up and get out of the chair. And you know people were going, 'We didn't realise you were that bad'. 'Cos I just couldn't get my body to do anything.

She tried different types of anti-inflammatory to get the right one and the right dose for her.

Yeah because the, the main tablets I was on, the, my consultant just put me on them. You know, he's a consultant and there's, as far as I'm concerned he knew, you know, he knows what's best. And he said that, you know, I just, you know, go with them and see how that affected me. When I got to my next appointment but the, the anti-inflammatories I was given because I, the doctor had already put me on anti-inflammatories and to me they didn't help. They weren't helping me.

So the consultant gave me a list and I had to try one lot for 3 months, 3 weeks, then another lot for 3 weeks and then try another one. But they, the ones that the consultant put me on suited me and when I come off, 'cos I had, you had to go on the for 3, 3 weeks then you had to come off it was 3 days before you started another lot, presumably to get them out of your system.

And I did say to my husband that they're, the Meloxicam which is, they'd, they'd kept everything under control so I wanted to stay on those ones and I was a bit worried I, yeah, I was a bit worried about 'Do I ring up the consultant and say, you know, I'm sorry but I haven't done what you've asked me to do because I prefer these ones.' And when I went back in there I was a bit sheepish and I did say to him, you know, 'That list you gave me, I didn't, I didn't bother with the other ones. I found these ones and when I came off them I found I was a lot worse.  So I said to my doctor, 'Is it all right if I stick with these?' And my doctor was like, 'Well, it's, you know, it's you, so yeah. Yeah.' And that, you know, so in that aspect, I did, I did have control.  

Only 'cos I said to him they, they did affect my asthma and I know this, and the pharmacist did say to me, you know, 'cos it's my local pharmacist he did say to me, 'These will affect your asthma.' And I, and they did and that's why I've gone on to ' dose. They suit me, they don't give me any side-effects other than that, so I'd rather stick to something that I'm, you know, that I've, I'm used to kind of thing. 

Felt some of the advice from the Occupational therapist on equipment was unhelpful because she...

I went to see the occ, the occupational therapist who was brilliant but by the, by the time I got to see her, you see the, I'd already done the hard bit without any help and I'd gone and she, she explained to me that I could wear splints, that I might, you know, if I wanted to I could have splints. She gave me some gloves which at that time it just, they're just, because all the swelling, 'cos I was, I'd swollen up you put these gloves on inside out 'cos of the, the, the, the seams, 'cos otherwise you get them, it sounds really stupid, you get up in the morning and you'd have lines on your hands where you've worn these gloves.

And it helps to keep the swelling down. I don't use them now, I don't, I don't need them now.  But they're things to help you write with 'cos I did need to, you know, I, at that time I, I, I didn't, I'd sign a cheque, you know, and it'd just be a scribble 'cos I couldn't shut my fingers properly. So yeah, the leaflets for me didn't help. I don't, I don't, I don't want to know about the long term, I wanted now. What's going to happen to me now? What's going to happen to me in a couple of weeks' time, you know.

So that, it didn't, they didn't particularly help me 'cos I just didn't want to think, 'I'm going to have to have splints. I'm going to have to have, you know, I'm going to have to have help with everything.' 'Cos you get things to help you with your zips, and oh no, no, no, it didn't. No, in fact, if anything it made me feel worse because I, I just remember thinking, 'I'm going to have to have all this. I'm going to, I'm going to have to need things to help me with my zip. I'm going to need things that you, you can, a gripper that you can help take the tops off', and so no. Just can't see it, oh no. Didn't help me at all.

So when you saw the occupational therapist, I mean, you said they gave you a gripper for your pens. So there was some thing that oh were helpful?

Yeah but, you see why I'd gone to see the occ, by the time I'd gone to see the occupational therapist I was starting to feel a lot better and I'd, but I still had the, you know, I, I still couldn't quite close my hands properly and, you know, I'd have a, so obviously my hands were the worst affected 'cos I couldn't grip anything properly. So by the time I'd gone to see her it, it started to get a lot better and by, by that stage as well I, I just adapted to everything. 

So, she, she didn't really help me. She gave me some good advice but she, quite scary as well, you know, you shouldn't put too much pressure on your hand, obviously where the, where they're all swollen up and things it's, there, you're going to do damage then. So she's, yeah she was quite frightening, you know. 'If you don't do this and you don't do that you're going to, you know, you have to find ways of adapt.' But you, you do that anyway. You do find that, you do, it's, it's, the same with everything, you, do find ways to adapt. So she, you know, that, she didn't really help me. Gave me some, you know, good advice but, she didn't really help me as it were.

When her arthritis was bad she wore clothes that were easy to get on and off.

Did it affect what clothes you could wear?

Yes. I preferred anything that I could just you know slip into, anything getting over my head 'cos I didn't have the you know,you get up in the morning, get dressed, you go, me, I just get up, get up and go, kind of thing, you know. But I did find that I'd I would have to get up earlier so I'd have enough time to get myself dressed prop, you know and buttons, I found buttons really awkward. So I tend to wear a lot of things that didn't just didn't require you know, tracksuit bottoms you just pull 'em on kind of thing. You know shirts that I could just pull over my head. So, yeah, I actually thinking about it I didn't realise how much it really, it really did affect me 'cos it just hits everything, all aspects of your life. You know, yeah it does, it just, so that that period I had to change everything. 

Still enjoys dancing in clubs but her feet hurt afterwards.

Because I like dancing and, you know, [laughs] just jigging down the club with my friends I find that I, I have to prepare for it beforehand. You know, I know that I'm going to be out to the early hours of the morning  so therefore I shouldn't perhaps do so much during the day. 

You know, if I go out at the weekend I know that I, that I have certain things as a mother I do anyway. I do, you know, you know, normal things like housework, you know, laundry, all that. But I do try to, if I know I'm going out I try to spread it all out rather than doing it all at the, so I think there's always, always a little bit of thing and I just, just, I love dancing and I've, it has, it, it's affected it. 

Yeah, I get, I can't dance as long as I, I, I did. You know, I'd like get up on the dance floor and have a really good boogie. You know, you like, you, you, you dance to one record and the next one comes on and you think, 'Well do I like that one? Yeah, I like that one, I'll carry on dancing.' But perhaps you wouldn't, you know your limit, kind of thing. So, and I don't go and sit down, can't do that. 

That's just, not something I do. So, yeah, I, it's just, just the little, like the stupid things like dancing. I don't dance for as long. I still dance stupid and I still dance, you know, but I don't, I, I don't overdo it. I do find that at the end of the night my feet are killing me. That's, that's the only, that actually, yeah, saying that, that's probably the worst thing about it.

Because it's in my, you know, it's in my feet and I like to wear high, I really like to look good when you go out, you know, but I'm getting to the stage now that I have to think, 'Well you either look good or you look comfortable and good.' So I'm now veering towards the comfortable [laughs]. Rather than the looking good [laughs]. So  I wouldn't necessarily go and get my 4 inch heels out, you know, kind of thing. 'Cos I know that I'm not going to be, I'm just not going to be able to stay on my feet. 

It was difficult to sleep with hot, swollen joints which hurt when she turned over and with the...

I didn't want to got to go to bed 'cos that hurt. You know I didn't want to, to, you know, you know you want to keep moving but you can't keep moving. So I had all that, that you know, that was there. I I'm, night-time were the, were by far the worst 'cos everything's hot. Because you, your joints are swoll, you're swollen up, and you've swollen up and everything all my joints, all my joints were red hot so I'd get into bed and I, I was drinking lots of water as well. I don't know whether I got into my head that that would help, you know, whether that would help flush anything out of my body that was, you know, it, 'cos it, you know, 'cos it could have been a virus. And I'm thinking, 'If I drink a lot, that'll help.'

But I'd go to bed and I'd have to get up in the middle of the night to go to the loo. Well I just, ughh, it would, it would probably take me I'd say a good 20 minutes to get out of bed and go to the loo. Because I couldn't do it, I couldn't. I, I was sleeping under a sheet because I couldn't stand the duvet on me. The duvet was too heavy. An ordinary, ordinary duvet and it was too heavy.

We'd I like, I do like my sleep. And the cats tend to come in with us. Not through choice but they do tend to come in with us and I'd have, I'd have to, you know, nudge my, you know when you've got the, you have the duvet and normally I just flick it, chuck them off. You know, they'd go, they'd get the hint and go. But because I couldn't do it, because I, I had more power in my, my arms than I did my hands, I couldn't pull the duvet up to me. 

Arrgh, it's just, you know, with that, I couldn't do anything. I, I would get into bed and wherever the duvet was that's where it's, wherever the sheet went that's where it stayed. Because I didn't have the power and it was really hot. I, I could heat the bed up myself, no problems because I was, I was really, you know, 'cos everything was hot and swollen and so that had a plus side as well because I didn't need my electric blanket. But, no, no, oh, no.

That was, that was by far the worst because it, you, when you get into bed you do all that turning and because you're all, you're, you're conscious of every single move you make so I would wake up and have to turn myself over. You know, I'd, you just, you, you, you don't do anything, you didn't do, I didn't do anything automatically.

The initial symptoms and disability she experienced before getting a diagnosis made her feel...

Yeah, just, the whole, I had the whole very, you know, I, you, you try to stay, you try to stay so positive but it's really hard because you, you, you've got it up here. You, your body just won't do it. So I did. And I, I'm not a, I, I'm one of those people that I, I, you know, I, I just go out, when I get down I do tend to get really down, you know. But it doesn't last long. But I just, that, that 6-8 weeks was a completely black area. You know, everything about me changed from what I was doing to how I was looking to how I was thinking. You know, I, instead of thinking, 'Oh I'm just going to hit, just gonna go and put the kettle on' kind of thing, I'd have to think, 'Can I go and put the kettle on?' So yeah it did make me de, depressed, very. Very depressed.

And did you know, sort of talk about it with your doctor or get any '

No, I, no '

'medication?

It's just, no, no. Just support but, you know, those closest to me were like, you know, 'You, you, you can do it'. And I do remember seeing that girl that I was on about, she, she said to me that she'd, see that made me feel better as well because she said exactly the same thing. You know, she said she remembers sitting there, she, she remembers sit, sat there and she cried. And I remember doing exactly the same thing. Just sat, just sitting here and just thinking, you know, 'Oh God, that's, that's it. I, I've got to the end of my road as it were. I can't go on like this. I don't want to go on like this.' So, just, oh it was horr, it was horrible. I really didn't want to do anything. I, and I'd never get as bad as, you know, take my own life as it were, but that's how you feel. 

That's, that's the stage I was getting to. 'Cos I, I didn't know, I didn't know if I would get better. I didn't know if I'd be able to do the, you know, do the things I normally did. So that's, that doesn't help. And because there's no-one there, because it's, it might, it might be common but it's not something you really talk about. You don't, you know, the, the, the woman or the man three doors up, you know, 'He's got rheumatoid arthritis, I'll just go and have a word with him', you know. You don't do that.  So there was no-one, you know, except for my husband and, and, you know, my mum and that. You know, my step-dad, there's, there was no-one I could really, you know, really say to them, and I, I could have gone to my doctor's but I, 'cos I tried, I tried to fight, I tried to fight against it.