Interview 29

Age at interview: 49

Age at diagnosis: 36

Brief Outline:

RA diagnosed '90 & Juvenile RA age 8-11. Significant DMARD side-effects. Had breast cancer '98 & drugs also relieved RA. Methotrexate 15mg/week, folic acid 5mg 6/7 days, daily Diclofenac, Tamoxifen 20mg & Nibedipine 20mg. Paracetemol & Zantac as required.

Background:

Full time senior position within the NHS, single, no children. Family history of arthritis.

Before RA was diagnosed she found it hard to walk down stairs as her feet hurt and she had stiff...

It was 1989. I can remember quite vividly my nephew was four in October, the seventh, he lives in [town]. And I went to, over to see him and bounced around and did everything that everybody does with four-year-olds and then in January, the following January, when I next went to see him I was coming downstairs 'cos he got me up early in the morning and I was holding the banister with both hands going down sideways one step at a time and he said to me, "Why are you walking down stairs like a baby?" So that was when I realised that something was really bad so'I have always, I've been trying to encourage him to be a doctor but he, he hasn't taken that one up.

So in between the October and January I had flu. It was, it was actually one of the years when there was bad flu and I was off work for a, a week or so. And it was when I went back to work. I was feeling pains in my feet mostly'and I was still wearing quite thin shoes so I thought, 'cos like a summery type shoe, so I thought I'd buy new shoes and that didn't make any difference. And then I was waking up every morning with me hands stiff. So that made me think there was something wrong.

Suspects that a genetic link even though she believes research has not been able to show this yet.

My mother's got arthritis cos I'm from the [name of island], it all the inbreeding. In fact there's quite a lot, you know, it goes back in the family. My grandfather had ankylosing spondilitis and his wife had, my grandmother, scleroderma, which is another autoimmune disease of the same kind of groups and no wonder really. But yeah, so it's in the family going back generations probably.

Well apart from the fact that it's in the fam, I mean autoimmune diseases seem to be in the family, no. I mean it's just one of tho, no, nobody knows particularly what causes it. The latest thing was meant to be some kind of reaction to a virus. That's what people think, but then there was a big article in the, was it The Lancet or somewhere, saying it wasn't genetic. But depends what you mean by genetic. But I think, I mean, people do tend, there does tend to be quite a strong family history to the various people. 

Mistakenly overdosed on painkillers on holiday by taking them too frequently.

So he started me on Voltarol I can, actually I can always remember as well, just before I went, I went on holiday with some friends to Madeira and I was hobbling about a bit there but on one day we went for a walk, it was, it was quite flat terrain, by mid-day and I was then dosing myself with aspirins and you forget, on holiday you have a late breakfast and have an early lunch 'cos, you know, we were just going out for, so I'd had three aspirins at breakfast and three aspirins not long afterwards [laughs] and I suddenly went as high as a kite and felt absolutely wonderful. And all, all me pains went, you know. But I thought, 'I can't really do that forever.' 

Penicillamine caused double vision, and not reporting it soon enough could have led to permanent...

At Christmas 1990, this was just a year after I was, first realised there was something wrong, I started seeing double and really not being able to focus and I didn't know what on earth that was about at all. So I put up with it all over Christmas which look, if, especially if you look at television and your eyes are suddenly out of focus. So then I went to the, to see, had an appointment with the consultant on the January and when I went to see him he said, 'Have you had difficulty swallowing as well?' I said, 'Well actually, now you mention it, I have really.

I went to a Chinese meal with some friends the other night, and, you know, they go on forever and you kind of force, I was forcing the food down.' I don't know if you've heard of a disease called myasthenia gravis. Well, I hadn't realised that's a very rare side effect of penicillamine. To get that.

So the penicillamine had to be stopped as well and I had to go and see a neurologist but by the time I got to him it was wearing off 'cos, you, you know, 'cos I'd stopped the penicillamine it was wearing off, although had I carried on with the penicillamine much longer and it might not have worn off.

And the thing with the when the, when the eyes were bad I didn't associate it with the drug. I didn't really know what it was. And it was Christmas and I thought, 'Oh I'll just tell him when I'm next there.' You know. But had I left it much longer it might, it might have been irreversible so it's, it's, it is I think part, part of being a doctor you tend to think, 'Oh it'll get better, you know.' Whereas if you weren't you might say, 'Ohh, you know, I'd better go and do something about it.' 'Oh,' I thought, 'I'll get better.' I think that about my car. If something goes wrong with the car ' It'll be better in the morning.' Then I think, 'No it's a car, it won't be, it won't be.' [Laughs].

She had to wait hours in outpatients and was not told that the clinic was running late.

And  the main problem with the access is that, you, you can wait for hours and hours in the outpatients department waiting to be seen. And for people with arthritis that's not a good thing. So and you daren't get up and walk about and go and have a cup of tea because they might call your name when you're out. You know. 

So I actually said this and they said, 'Well you could go and ask at the desk.' I said, 'Yes I could. And there were about 50 people waiting and if each person went individually to ask at the desk the clinic would be chaos, wouldn't it?' 'Oh yes', they said. 'So why don't you, like you're supposed to, under the Patients' Charter if the, if the clinic's running more than 1/2 hour late, why don't you tell people? 'Cos that's what you're actually supposed to do, anyway.' So the next time I went in, 'cos the nurses all know me,precisely 1/2 hour after my appointment was due a nurse stood up and said, 'I'm terribly sorry everybody, everything's running 1/2 hour late today.' 

Two hours late or whatever it was, you know. 'Sorry about that but that's the way it is, you know. But you can go and have a cup of tea if you want.' So they'd obviously taken notice of what I'd said.

Annoyingly others told her to try their 'patent remedies' and then blamed her for her illness if...

When I first, what annoyed me when I first got the arthritis, was, people were saying, 'Oh you should try comfrey tea. You should try olives and gin' or whatever the latest thing was. And then they'd see me a few weeks later and if I hadn't tried it they would say, 'Oh well,' you know, 'no wonder you're still bad.' You know. That used to be [laughs] good heavens, you know. It used to really annoy me. My fault 'cos I hadn't done their patent remedy for it, you know. And everybody was, every, everything from psychotherapy to whatever, you know, I should be doing, everybody told me, you know. 

She enjoys exercising in a gym and uses a treadmill when she can't walk outside.

So I just said to them, the guy well in fact the first one was at this hotel and I said to this very young lad, you know, 'I want to do something  not just swimming now. But I don't know what I can use in the gym.' And he fair enough said to me, 'Well, actually, tomorrow Steve will be here and he's got, he's got a degree in Sports Science and he knows all about that.' So I said, 'Fine, I'll come and see him.' 'Cos I'd said, you know, 'I want, I didn't want things straining my joints'. 

So he, he went through all the equipment with me. Some of it, that, that gym was difficult. It was difficult to set up 'cos you have to move things and get, get the weights right for yourself and that was a problem. Some of the stuff was difficult to set up. The gym I go to now, it's all been designed to be very, very easy to set up, you know, so if I couldn't set up a bit of  equipment there's always people floating around not doing very much who would come and do it for me, really. So it is good. 

And  they got me on a treadmill as well. I've tried a few things. I'm not, I'm keen on the cycling I, I just don't like that but when I couldn't walk outside very much I was doing a bit on the treadmill anyway, 'cos it's fairly controlled what you're doing, you know. And if you get tired you can just stop. Whereas if you're out for a walk and you get tired, well you've still got to get home again, haven't you? Whereas there you just, you just stop. 

Cos often with these exercises that you do without equipment you're putting strain on other joints when you're doing, when you're exercising one joint. But these, this, all this equipment is, is, it is very good. 'Cos the, each, each piece of equipment's designed to exercise one muscle group only. So you're not putting any strain on any other part of your body  So it is, it is good.  And so long as you, you, I mean, I've got, 'cos I know a bit about it anyway, so between us we can work out stuff that I can do that's not going to put any strain on my joints. And then  after that I usually go, I, I always go in the pool, so that I don't get stiff afterwards, so, 'cos the pools are nice and warm. As well, so, yeah it can be done. But most people would be scared to do it really, I think they'd have to go to a gym or whatever.

Access to Work helped her to obtain voice-activated soft ware and other office equipment.

And is Access to Work available to anybody in work, not just in the health service?

Yeah, yeah, oh yeah. It's a government, it's, it's not actually called Access to Work now. I'm trying to think what it is called. Anyway, it, I'll, I'll look it up later, you know, on the website. 

Yeah, apparently there's loads of money lying around to pay for this stuff,  and nobody knows about it. So they paid originally for the voice activated software. Then, then they paid for this, this keyboard the, the ergonomic keyboard is fairly new. It's 'cos I, I got another assessment from them. They, they send someone in to assess you, decide what equipment you want and then they pay for it. And they pay for training to use it as well if necessary. So I had three 1/2 days, somebody came to train me how to use the voice stuff, but all that was paid for. 

And you know, this, [Ergonomic keyboard] this is actually quite a good, 'cos if I've only got to type something short I don't want to be, you know, put, you don't have to put all the whole thing on [Headset]. I can just do it on there,  you know, but people don't know about it. So the guy who did the project that I've just given you the report on, he's a wheelchair user so he got, he actually got a back up wheelchair on the back of Access to Work 'cos  he has to have a wheelchair.

Yeah, the, the headset, that's the telephone headset, that's, that's the headset for the thingy [computer]. This is, this, 'cos at one point I was in an open plan office so I had  I've got this loudspeaker thing anyway so, [demonstrates loudspeaker] so I could just do it by loudspeaker but obviously in an open plan office that's not a very good idea. So yeah, so if I have a long telephone conversation I can put that on. I don't use this much now. At one time I did a, a lot, when my wrists were bad 'cos just holding your phone up to your ear is a bit much. It's actually handy anyway 'cos if you want to make notes you can when you're on the telephone conversation. But, yeah, now if it's likely to be long I'll, I'd say, 'Hold on now, I'll just put my head, headphones on.' 

Describes many things that cost more because she has arthritis.

Clothes, yes, you're restricted on what clothes you can buy because you can only really buy st, I can only really buy stuff that I can fasten from the front. And shoes are expensive. Although I've now found a shoe shop one of these I don't know what they are, anyway, but it's a great big shoe shop and you can get training shoes for 25 quid, which should be 50. I mean, that's, you know, 'cos I, usually it's '50 or more a go to get training shoes. I mean these were 50 quid. I mean, again I can afford that but, but for people who are not working or whatever, or low paid jobs, it is a big thing. And you can end up buying shoes that aren't any good to you. So then you, you know, you've wasted the money and all that kind of stuff. 

So all those things do add up really. And if you had, if you had a family you might, you might have to, to pay for  help, like I do have help and, I mean, you do have to pay for, for more.  

Yeah, I think that's it really. I can't think of anything else that might cost more. Well, yeah, it's equipment like this, you know, you, you can't just get the standard computer. If you want the voice activated that costs money. The, the ones that come with the computer packages are not all that wonderful. You really need a, for me I'd rea, I really, you know, the, the proper one. You know, that, a sophisticated one rather than a basic one. 

Yeah, and if you can't use public transport and you cant' drive a car then your only option is to use taxis which can run very expensive. Although in a city like [city] it's probably cheaper than driving a car, or could be 'cos you don't have to buy the car and pay for the tax and pay for insurance etc etc. And, but I keep a car on anyway because it's easy for shopping and stuff. So that's probably it. Isn't it?

Yeah, it's just generally day to day life costs more. And if you want any fancy handles on your spoons or whatever you know anything like that costs an absolute fortune for what they are, you know, anything, it's, you know, really. The other thing, these lap tray thingies I got from a market stall, they're quite cheap but you know, if you need, if I need any, any other equipment you start to have to pay for, if you have to pay for it yourself, it all starts adding up. 

Found out about useful organisations and aids to help her work and was surprised that her OT and...

And then I remembered that one of my colleagues had set up a team of people to, the official, what, what officially they were supposed to be doing was managing disabled children, between childhood and adulthood, so, you know, 'cos they had a good service, the school health service and then there was nothing and this was to kind of tide them over. And I thought, 'Well I bet they'd know about what, about stuff to do.' 'Cos they, I knew the Director, I knew her outside the work as well.

So I phoned her up and they, they had started putting older people on the books so I then became an official patient then and they put me in touch with their, they, it's them that got me the arm rests and stuff. But my rheumatologist and OT hadn't event heard of them.  

So I gave them all the information and he's now referring patients to them. But it's just horrendous really when you think 'cos other people might, at that point when I, I could have given up their job really, but be, because I knew people because of my job I, I got advice and, and what the health service hadn't realised as well is that you can actually get reimbursement for the costs of all this equipment from the Access to Work. They didn't know about that either, you see. So they missed, missed out on a lot of money. Neither did the rheumatologist, neither did the OTs. Nobody knew anything about that. 

And that then immediately?

Brought me into contact with loads of radical disability rights people who knew about, everything about everything. So that was, for me very empowering because it, it looked at disability in a whole completely different way, that the problem isn't me it's society. I mean, I discovered that anyway in one sense, you know, the hospital didn't know what they were talking about really.

So well, it was one, one in fact put me in touch with a chap who had the voice activated software, he's a paraplegic. Had a little bit of movement in one hand so he could, he could work a mouse but nothing else. Because I kept saying, 'I'm sure there must be some other way of using it.' 'Other than typing.' And they were trying what, all different things but nobody really knew what, what there was available. But, so this voice stuff was wonderful. 'Cos you just speak into your computer then.  

So the rheumatologist and OT came down to see it. So I made, and by then I'd got arm rests. I'd got this various things.   Even this tilting table, you know, all this kind of stuff. And even that, that, that little thing they didn't know about either. You'd think an OT would know about, wouldn't you really?