Interview 27

Age at interview: 45

Age at diagnosis: 17

Brief Outline:

RA diagnosed 1975 after stiff fingers. Elbow replacement '91 and 2 toe operations. Currently Methotrexate 10mg/week & folic acid 6/7 days, daily Cyclosporin 150mg, Diclofenac 100mg suppository, co-codamol as required and Losarlyn 100mg (blood pressure).

Background:

Voluntary part time school support assistant, married with 2 children. Remission of symptoms during pregnancy.

Reflexology is very relaxing and she was sure it helped her entire body.

I do have reflexology, that's the one on the feet isn't it, yep, yes I do have that, every week, it's a friend of mine that does it. I do have that most weeks. I was her guinea pig to start with so, and it is lovely, it's wonderful. But sometimes I come away thinking 'Oh I'm more stiff than when I went', but yeah it does, it is good, I would recommend that to anybody, it is brilliant, and it makes you feel so relaxed, especially when she uses the oils as well, in with it. It's very good.

And you know for somebody who's not familiar with it, what does she do?

She usually puts some nice soothing music on and massages, wipes your feet over first and then massages them with, sometimes with oils, sometimes not with oils and she'll sort of, it's explaining, pinch and nip and, but not, not in a hurtful way, it's wonderful, massaging your feet, but it helps all over your body and she, funnily enough she can tell if you've got a headache or whatever, I never actually believed it at first, but I didn't actually tell her that I'd been having pain in my neck and she said it's really crunchy, is there something wrong with your neck, and I couldn't believe that she didn't, hadn't been told, but just by massaging my feet, it sends you to sleep, it's lovely, very relaxing. T

Try it, its good. And it's not very expensive either, she actually has started charging now, but purely because of the oils and things, but when I was a guinea pig she did it for nothing, so if you've got a friend that can do it, do it [laughs]. It's very good and it helps, not just with the arthritis but it helps other things as well, stress, blood pressure, everything. And she used different oils for different things, so it is good.

I didn't believe it, I didn't believe it to start with. But it is very good, maybe it just relaxes you so much that you forget about the rest of the things, whatever it is it's good, it relaxes you more than anything and it does help.

She does not receive benefits because she was assessed by a doctor on one of her better days.

I don't know I just feel I'm not as disabled as a lot of people and I think if I'm thinking that then obviously they're going to think that as well, I don't know what it is. This I don't know an awful lot about benefits anyway, I know there's mobility and things like that, but because I'd been turned down for it, I've never really re-applied for them.

And how long ago was it when you were turned down?

Quite a long time, but you see a lot of it, on the forms and things it's how far can you walk, how many steps can you go up before you've got to stop and take a breath and all this sort of thing. Some days I can walk up and down the stairs fine, some days I can walk to the top of the street, other days I can't and if they were to assess me, with my luck it would probably be on a day when I could do it. Which that particular day, when he came to see me it was, so he just turned me down for it.

The system is very awkward I think because they tend to go on what they see. I feel that if they were to see me on day when it was really bad, then I probably would get it but if they saw me today I probably wouldn't. They go on what they see a lot of the time, well I feel this anyway, I don't know, because other people that I know that have been turned down as well. But then, I've also seen people that are on that many benefits there coming out their ears and I think myself well how come you've got all those, you can do a lot more than I can, but maybe they just caught them on a good day.

Or maybe you're seeing them on a good day [Yes, exactly] and they have other days that are bad?

I've just done, yes, yes. That's it you see you don't know. Looks are deceptive, but unfortunately it seems a lot goes on the looks, you can fill as many forms in as you like, but if they see you on the day and they think you can do a lot more than it actually says on this form, but if they've caught you on a good day, that's you've got no chance that's my feeling anyway.

Family, friends and neighbours offered to help but sometimes she wanted to be independent and...

Yeah, mainly my Mum, she's very good and my children obviously, my sister's very good, friends, yeah they've been alright nothing sort of, they've helped if I've had to go into hospital and things like that, but I'm a very independent so and so and I refuse help rather than, I know I shouldn't do but I'd rather do it myself and get on with it. But they're there if I need them, and they talk to me if I need, or they listen to me rather if they need to. Yeah they're very understanding. I've got good friends and most of the neighbours are quite good as well.

Breastfed both her children for a time before needing to take medication again for her RA symptoms.

If I say, cos I breast fed my daughter for a while for quite a while and I would say maybe about two or three months old she was when it really couldn't get up in a morning, the aches and pains are back, very stiff couldn't move very well and that was it really just bam! It was back and it was back worse that it was before. So I don't know why.

So did you then go back onto your drugs again, or had you gone back on them after the baby was born?

No because I couldn't because I was breastfeeding I couldn't go straight back onto the drugs anyway and whilst ever I wasn't feeling anything then I didn't have to take the drugs, I thought 'oh great it's gone you know, it won't come back'. But it did and they had to work things round so that I could have a certain amount of things that wouldn't harm my daughter through breast feeding, but then I had to stop breastfeeding anyway because it did get too, too bad and I had to go back onto the medication so, but yeah it, cope without it, I suppose it needed the medication to try and get it back under control again, so maybe that's why it seemed worse because I wasn't on anything, I wasn't taking anything to ease it and daren't take anything to ease it cos I didn't want to harm my daughter.  

And what happened after the birth of your son?

It just came back the same really I breast fed him as well, so I can't remember if it was exactly the same amount of time, but it didn't come back with a wham, that was more gradual  although it did come back in more places and sort of severe, but I knew more or less what to expect anyway, so we'd gone to the doctors regularly anyway.  

So I just worked it through that way. We'd started adding drugs gradually, I didn't breastfeed him for quite as long as I did her anyway. So I was able to go back on the things and the injections that I was having worked quite well so that was alright. I mean obviously I couldn't have them whilst I was breastfeeding but, no it was, having gone through it once, it was easier to think right yeah, the signs it's coming back, straight to the doctors, and although I was visiting the doctor anyway to keep a check on it, monitor it, but it came back and it's still here.

Her GP practice allows patients to contact the doctors and order repeat prescriptions on-line.

Plus I can also get on line to my doctors now as well. [Ooh] Hmmm yeah. They've got an online thing at the doctors so if I need to order a prescription or anything I can go on line and do it as well, so it's really quite good yeah.

Can you, apart from prescriptions I mean can you e-mail them sort of questions and stuff?

Yeah you can do all sorts on it yes, it's quite good, they've only just recently set it up, it's not been going very long, but yeah there's all sorts of different things on it, that you can contact them and if they need to know anything they'll phone you back or whatever, or they'll send you an email or you can do all sorts through it yes, its quite good.

How quickly do they respond?

It's usually the same day, but I've never actually had to do an awful lot to contact them like that, they have had slip-ups with the prescription wise, you've ordered it on there and its come up saying your prescription will be ready in 48 hours or whatever, and you've gone down and it's not been there. But they're pretty good at sorting it out afterwards it's only a couple of hiccups. It's pretty good, yeah they're doing well with it. 

It doesn't clog the lines you see for getting through, you know ordering repeat prescriptions and things like that, it clogs the telephone lines and the receptionist is on that all the time, they've got a special line now also and the ones for, that can go on the internet you can order it through there, it doesn't clog the normal telephone line up, it's quite good it works.

The symptoms were not bad during her two pregnancies but after the births they came back with a...

And then found out I was pregnant and it started to ease it was lovely, wonderful, a nice respite. They were worried about it at first because they thought 'Mmmm you're not going to be able to', because they didn't realise that when you're pregnant it went away, or they didn't at the time and so I got all these special treatment and care and everything and, but it just disappeared, it was wonderful.

The swelling was still there but not the pain so I kept, you know, it would be wonderful if it could be like this, and then my daughter was born and it came back with a vengeance 'Wham', it got a lot worse, but she was really good, she was like a little monkey and she'd hold on, and cling on, but I couldn't pick her up like that, I had to pick her up differently. But we adapted round it, you have to, still sort of determination 'it's not going to take over my life', so, just went on like that. We decided I wouldn't have anymore children because it wouldn't be fair on them keep going in and out of hospital etc having different treatments and things, but I did. 

We had my son  he was planned, we did plan him eventually he was planned. It was totally different then, then they had found out about the fact that it disappears and I helped them with research too, which is somewhere frozen on ice are all my samples and things because they didn't get enough to actually do anything, enough participants to do anything about it, so because then again, it disappeared again while I was pregnant, but came back even worse, and it steadily got worse as time's gone on, so.