Interview 39

Age at interview: 27

Age at diagnosis: 27

Brief Outline:

Diagnosed for 9 months but symptoms for 4/5 years. Current treatments Sulphasalazine,voltarol, thyroxine, ventolin, coproxamol. Diclofenac twice daily.

Background:

Housewife/mother (previously nanny), married with one child.

Tries to go without painkillers to test if she needs them for a particular activity but takes...

I'm perhaps a little more careful and I've got extra pain killing tablets that I can take if I'm having a really bad day. So if I know that I'm gonna to be doing a lot on my feet or something, I either kind of take some to pre-empt not getting in pain 'cos if you're in pain, you get tired more quickly or I just take them with me. If I, if I've done something before and was OK and I took the painkillers before, I sometimes as long as it's not silly to, I try to do without them. I still take them with me just because if I always take them I'm never gonna know whether I can do stuff without them. So I mean I'm not, I try not to be silly about it and I you know, if I'm in pain I'm obviously gonna take them. But I don't take them unless I am in pain if you can see what I'm saying [laughs]. 

Yeah I think I know what you mean, yeah.

Kind of you don't know whether you need them unless you don't take them sometimes, you know, 'cos they're the extra, they're the extra ones on top of the, the Diclofenac that I take so I kind of I shouldn't be taking them every day anyway so. I just take them when I need them [laughs].

Describes the hydrotherapy exercises she did.

We did some marching and marching with different buoyancy aids on our feet and pushing the water, pushing your, your wrists through the, your hands through the water with different buoyancy aids, so kind of the more buoyant, the buoy the more buoyant the item was the harder it was. So you kind of start on kind of child's arm band half inflated and then you're on a small rubber ring half inflated, and then fully inflated and then large rubber ring fully inflated [laughs] I, just each week I tried to  to  kind of have more air in whatever I was using at that point and  just see, see how it went. I mean some weeks, some weeks I did get too tired. 

She had difficulty with mobility before she started treatment but now it is much improved.

Really going up and down the stairs and getting up and down from the sofa and actually getting down on the floor with my daughter. And now none of those are a problem. Ironing was, had to be taken in short bursts 'cos I got too tired and too achy standing up for a long time but fortunately I can do all of those things now [laughs] I try and suggest that I can't but it doesn't kind of wash with my husband anymore [laughs].

So kind of life now is so much better than it was a year and a half ago in terms of what I can do because I am so much more mobile. I still can't crawl across the floor  but I can walk across the floor on my knees and I can get down and up again quite quickly so, and I can run up my stairs which a year and a half ago I could barely walk up them. So, you kind of I, it's, you know, my, my joints are so much better than they were a year and half ago. I, I'd have been much happier you know when I was diagnosed if I knew it was going to get that, that good. I really didn't think I'd be able to do what I can do now. So but I don't know whether that's the same for everyone or whether I'm just really lucky on the drugs, or, or what.

Equipment she has found useful includes an adjustable bath seat and hip seat.

Oh the other thing we found useful is with my problem with my wrist I can't, the way you're shown how to bath a new baby is to put your arm round and hold' I can't remember 'cos my little girl's nearly two now, whether it's your, you're hand, their hand, their arm or their leg the opposite side from you and I can't do that. I can do it but I don't feel safe doing it. And I found, I think a friend was using it, an adjustable reclined seat that suckered onto the bottom of the bath. I think there were several that you could get but the one we got was adjustable so as she grew, it could be adjusted so she was reclined. She loved it 'cos she didn't have to be held.   

I didn't actually give her that many baths but that's just because my husband loved, you know, Dad's got to be involved somewhere along the line. But she loved it 'cos she could kick, Dad used it all the time and I felt safe 'cos I could give her a bath because she couldn't go anywhere because it adjusted as she grew. It was fine and that I think we used from, from when we got home from the hospital, so she was, she was a few days old then, until she was nine or ten months. And it was only 'cos she sat reasonably early, so she was she was confident sitting on the bath so, yes that worked really well.

Yeah one thing I have, have found useful is we bought this thing called a hip seat I mean it's not a sort of a product necessarily for someone with arthritis but it it's kind of like a bum bag that goes on your hip, that your child can sit on and then you just put one arm round them, so your back's straight. So it's a way of carrying them when their legs get tired, without hurting yourself and I've, I found that really useful. I mean whether it's whether I find it really useful 'cos I've got arthritis I don't know. I know a few people that have got them 'cos they're not, they're not kind of the world's cheapest piece of equipment, I think they're about '40 or something but we've find very useful. 

She and her husband discussed medication and its implications for pregnancy with the consultant.

So that was quite good 'cos we were able to ask all the questions we, we needed to. So I mean the drug I'm on apparently wouldn't be a nightmare if I got pregnant but obviously it, it wouldn't be advisable so kind of we, we openly told the consultant that we didn't want to just have the one child, we did want to add to our family at some point. But we were thinking a three year age gap anyway so that kind of worked in fine really 'cos you need to be on the drug for about nine months to a year. So it'll probably work out that I will be on it a year so, my next consultant's appointment we're gonna discuss that and see what, see, 'cos I, 'cos you have to kind of wean yourself onto the drug so I'm assuming that you just don't stop taking it. So, so it'll be interesting to hear what he says really.

And so, you know, that's what you're thinking about now is, is whether to come off it or not?

Yeah. Kind of  well when I went off, when I went on it we kind of discussed that I would be coming off it, kind of a year later which will be coming off it in the spring really. I kind of think that's, must have been when I started taking it, so that will be, that will be about a year so. And then hopefully, and he said the ideal thing would be to to come off it and then get, get pregnant the very next month. Obviously, the, from the arthritis point of view that's the best possible scenario but obviously real life's not the best possible scenario so we, we shall see how long it takes and  how bad my mobility, how much my mobility deteriorates 'cos obviously I've still got to carry on with life, you know. Having another baby is not the be all and end all of life really. So we shall, we'll see, see what happens. I mean it, it hasn't, it didn't take very long last time but kind of nothing's a foregone conclusion really. 

And have, and have you sort of thought about other op, you know, other options if, if your arthritis does, you know, sort of become too much and you're not pregnant?

Well, I mean, at, at some point we kind of, I think probably before, before I come off the tablets I think my husband and I need to sit down and kind of seriously discuss how bad we let my mobility get because once you start trying kind of there's all the, 'Oh well, I might already be pregnant,' kind of emotions really, kind of, you kind of, you get lost in the trying for a baby bit and kind of you forget reality really. So, I don't know we, we haven't had those kind of conversations yet.

As, as soon as you're, when you're pregnant though it goes into remission so it, once I'm pregnant it sh, shouldn't be too much of an issue. But, I mean, I think if, if I hadn't gone on the drugs at all I can't see us of having another child because I wouldn't have, I was in so much pain to then have, be carrying a, the baby as well. It kind of, I think it would have been a silly idea , So, but I mean I've, one of the things that was suggested was that I lost quite a lot of, I lost some weight  and I have actually lost a lot of weight so actually I'll be in a better position this time starting a pregnancy than I was last time so which is quite good.