Interview 34

Age at interview: 78

Age at diagnosis: 32

Brief Outline:

Diagnosed 1957. Had one of the first knee replacements (R) in 1961 but restricted movement since. First left knee replacement lasted approx 30 years and revision 10 years. 8 toes removed. Has taken Prednisolone (5mg) for 41 years.

Background:

Retired clerical worker, widowed with 2 surviving adult children. Diagnosed whilst living abroad with husband and 3 children. Returned home to more moderate climate.

Is frustrated that so little is known about the causes of common diseases, and reflects that RA...

I mean, I don't expect to see on the television news every month 'scientist have discovered a new drug for arthritis', but it does still pinch a bit when men go up to the moon and walk on the moon but they can't cure the common cold. You know, why? You need all the physics and maths and everything to get to the moon, why can't you do that into a medicine? As my husband used to say, 'Because that's chemical, going to the moon is physical.' 

But I still feel that it's regarded as the, I mean pneumonia used to be the British disease but I think now arthritis is. All the people that I've met and spoken to abroad and people, I mean we've had friends from Burma, from Thailand, from India come and stay here and they all say 'It's the English disease'. You very seldom find an Indian, a Burmese, a Chinese or a Pakistani with rheumatoid arthritis.

Now why don't you? I've come to the conclusion because they are born and brought up in a hot climate. Hot to us, normal to them so their immune system is already adjusted to that sort of thing. But I think with us we have too much of a climate. You know, I mean we've been lucky this year, we've had a good summer. Heaven knows when we'll have another good summer. It's not a thing you can take for granted. We might have a very bad winter. I mean even where my eldest son lives in the Middle East, their winters are like our autumns in climatic conditions. Their summer is very intense heat but it's only for about 6 weeks.

Taking steroids for 42 years made her skin thin and fragile.

But what I would like to have known, when I first started it, and what I know now about it, is the effect cortisone has on you. I mean, I can see the effect it's had on me. Thin skin, you know. Knock, knock your skin and you're black and blue. And if you happen to fall badly your skin just sort of shears off so that you're all bleeding and it, it looks awful, terrible.  

The side effects I've had from cortisone is I am a stone overweight. Also my skin is very, very thin so that if I knock myself or cut myself, I, best place to go is the casualty and they just pull it together, the wound together and then put those cross stitches on. You can't stitch through my skin 'cos as you put the needle in and pull it out it would tear the skin. I'm allergic to elastoplasts because someone put that on me one time and when they took it off my skin came off with it. Which it, you cure one thing but you create another problem. This seems to be how it is with arthritis.

Her special boots and insoles are made to measure but she has had to wait and had problems...

Oh it's pretty dismal at the moment. I've been waiting since February. The rheumatologist said, 'You must have some new boots', and I said, 'All right'. And so the fitter only comes to the hospital one day a week and they were without a fitter for about three weeks and then I, I've never yet seen the same fitter twice. I went to see him and I had my feet measured and that was all right and it was the same last number as the pair before, so that was all right. In, that was in February, March. In June I got a notification to say my boots were ready so I went down and collected them and I have to take them to the chiropody school because they fit the in-soles in them.

And they made these in-soles which took two more visits to the chiropody school and when [laughs] when the tutor said to me, 'Now we'll put your boots on and see how they feel with you walking', I was like Mr Hopalong. Down on one side, up on the next. Down on one side up on the next. And no, nobody had noticed until I'd put those boots on and walked in them that they'd forgotten to put the cork like in-sole thing in. So I was ' inch lower with the right boot than I was with the left one. So they've had to go back to the makers' again and they decided because I had trouble tying the laces with my fingers they would put those strip things across. 

Velcro.

Velcro fastenings. They put three on one boot and two on the other and I, they were so tough I couldn't get them across to do them up. So that was another fault that had to be. Now I'm supposed to go next week to see the fitter. If it had been on a Thursday I wouldn't have seen you [laughs] because you only see him when he's, he's like the invisible fairy, you know. I did say to one person in the office, the last time I went, 'Are we going to get a permanent fitter?' And she said, 'We've been trying but they're so scarce on the ground and of course it's holiday time too'. But so that was the story of my latest pair of boots.

She uses an electric 'four wheel trolley' to get to the village and back.

Four wheel trolley.  

Yeah?

Yes.

How did you come to the decision to get one of those?

Because when my husband died, I sold the car. We'd only had it a year, sold it back to the garage he'd got it from. Well now, unless I got a taxi, I can't walk the length down to the village, to the post office, to the chemist, and that little few shops up and down there, and so I decided, well, I, I can drive a trolley. I used to drive a car so it can't be all that difficult. And we, [daughter] took me into the shop and we just picked this. It's only got thumb controls. So as I can use my thumbs.

Yes. One is forward, one is for reverse, that's all. And to stop it, you just take your thumbs off the levers, you know. They weren't terribly helpful, in the shop where I bought it from, which is called Mobility. For instance, I've been back since and asked if they have a cov, like a canopy to fit on it, so that if it rains, you know, you're in the dry. 'No, they don't make it for that model'. 'Well do you have a cape with a hood and that to go over?' 'Noo. Nooo, we don't have one for that model.'  Which I don't find very helpful, you know.

I've got a motorcycle cover, which I keep over the thing. We did think about, [son] thought, my eldest son, thought he'd make a ramp to, so I could get it up into the shed that's there. But it's impossible the door's not wide enough. So it has to, and besides which, it's electric, it's on charge all the time and so you wouldn't be able to charge it from the shed, unless you had a very long lead. But I have it through a hole in a window frame in the kitchen, and that comes through.

And does the, I mean, it, it gets you there and back?

The charge? 

It doesn't run out or anything, it gets you far?

It gets me from here down the bottom, to the village.  

Her children offered help, which she needed, but sometimes she found the role reversal hard to...

It's only now, that they are older, that we seem to be equals in as much that  my son lives abroad. Before my husband died, we would visit them once a year, they would visit us the next year and so on but as I've got older it's been a case of, 'Do you think you could manage to come out, could you get on the plane all right?' In fact my son has come over here, stayed a couple of days, collected my husband and me, taken us back on the plane to where he lives and then coming home, he's come home, stayed a couple of days with us see  that we are settled in and then he's gone back. But that's a very expensive operation for a man with two children. 

But he needed to do that. I mean, in, in the early days I would have fought and said, 'Don't be so silly, we're not imbeciles, of course we can get on a plane', you know, 'We've done it before, we can do it again'. 'Yes, but you're a lot older now. And so am I', he says. And he needed to see how, even with care, we coped. And that is the same with my daughter. 

She gets over-protective at times, which drives me up the wall and across the ceiling because I feel, 'Look I'm still your mother, you're still my child. Sometimes it reverse, seems as though it's reversed round' and I have to say to myself, well I don't have to say to me, I have to say to God, when I, I say my prayers, 'Forgive me for misinterpreting her intentions'. And again it comes up with this, 'She meant well' [laughs].  

She feels there are 3 ways to approach RA but living with it is the way she has chosen.

As I said earlier on, there are three ways you can deal with arthritis and I've found this out personally when I first started this. You can be very angry and fight it. That only lasts for a certain time because the only one that's getting hurt is you. 'Cos the more of a temper and, and that you get in the more you create, 'Ooh that hurts', sort of thing.

The other thing is you can give in right from the beginning and you can say, 'I can't do that'. And let everybody else do it for you and give no thought to the fact that they've got their lives to live and they shouldn't be feeling that way that they've got to do it for you. And the third thing is to come terms with it and don't live against it, live with it. And when you get a bad pain just sit, whatever suits you. If you get a bad pain and painting the wall gives you relief, go and paint the wall. If you find, like me myself, the only way to get over it is to just sit quietly and rest and it will go. 

She felt she had let her children down by having arthritis, but they helped her regain confidence...

Yes. It affected me  when the children were still at school, I didn't want to go to any of their sports days or open days, or anything connected with that, because I felt I'd let them down. It took many a year, for me to understand that I hadn't let them down. I was still their mum, if only my face was left, I was still their mum.

And they treated me just so, so sort of normally, you know, when you've got a daughter and she gets to 16, 17 and she's interested in this and interested in that, I felt I couldn't do that with [daughter] because I wasn't the same mother as I had been when she was thirteen. And [huh] you get a sense of, you go through it, it's a stage of,  you, you've no confidence, you've no self esteem and you don't know what to do to get back into normal again because the pain of arthritis dictates everyday what you can do and what you can't do. 

And it's no good making up your mind 'Well I'll go shopping today or I'll go shopping tomorrow' because you don't know what you're gonna be like. And I used to feel, not ashamed, but this great sense of having let them down. So I wouldn't go to their school sports, I wouldn't go to the open days. And gradually they sensed how I was feeling and they used to say, 'Even if we have to hire a horse and hitch him to the wheelchair, you're going'. They overrode all that sort of nonsense, 'cos that's all it was, was nonsense. But when you lose your, your self respect and that, you do have a lot of nonsense in your head.

So they helped you sort of to build it again.

Absolutely, absolutely. Hmm

She attended a support group for others with rheumatoid arthritis but didn't like it.

Have you ever been to a support group?

No way. I went once. One of the local old gentlemen round in the village decided he'd do volunteer work and he'd take me to this rheum, rheumatoid arthritis, 'RA club' it was called. It was in a church, church hall. Unfortunately the church hall was in the middle of a busy town and he was a dear old thing but he would look at me while he was talking to me, so we'd be bowling along about 45 miles an hour and he'd suddenly say, 'And how are you today?' And I'd be, 'Ohh', grab, trying to grab the wheel to keep us on the road.

And I didn't like the, the actual club very much. It was because people were inclined, after the first five minutes, 'How long have you had rheumatoid arthritis?' 'Oh, you were very young'. 'Oh I've only just started it this last year'. And I'd say 'Well I feel very sorry that you've got it'. But what else can you say? They were all self  not connected but 'if you haven't got arthritis you shouldn't be in that club' attitude you know and I didn't like that. And I didn't like being brought a cup of tea and biscuit and told, 'Now you drink that and you eat that' as though I was 5 years old. 

I didn't like a game that they played. The second month I went to it we had this game where you were given a sheet of paper and it just had squares and on, in the squares were numbers and somebody threw a dice and you had to get a six to start off that and you had to put a round like O in this square and then the dice was thrown again and if it was a four you put one leg on the bottom, Beetles, Beetle-drive was that. I thought that was idiotic, that was doing no good for my fingers and as for my brain well that had gone walkabout out of the door. I thought, 'No way'  So I decided, 'No I wouldn't go'. I, I'd make my own things. So I joined the local Art Club in the Village Hall and dabbled around there and made my own things.