Interview 36

Age at interview: 28

Age at diagnosis: 5

Brief Outline:

Diagnosed 1979 as a young child. Currently on Methotrexate 10mg & folic acid, tramadol 100mg 2/day, solpadol 7/day. 2 hips and 2 knees replaced under spinal anaesthetic in succession over 2 years. Broken femur complication of last knee operation.

Background:

Not employed. Single lives at home with parents

Loved hydrotherapy - it kept her mobile and warm water relaxes stiff joints.

I loved the hydro, you know. The hydro was, was great. It kept me relatively mobile. It's been a few years now since I've had any courses, I would sort of have, I mean what, what I would really need with the hydro is to have it all the time. But when I used to have it because they can't or don't give a sort of endless prescription of it, you have to have sort of a six week course or a two month course and then it would stop. And also the thing with it was that it was in, you had to travel to a hospital that was half an hour away.

So by the time I would get back home after being in the car for half an hour, I would just be stiff again, so some of the, some of the advantages would be lost. But I certainly felt the, felt the effects. After I'd been away from it for a few months, after it had stopped for a few months, I would certainly feel that I needed to go back to it again. It's a great thing, hydrotherapy because of course you're weightless practically in the water.

There's not the weight on your joints, so you can do all kind of exercises without it putting too much pressure on you. So a pool in my back garden would be great. [laughs] but other than that it's logistically a bit difficult to get, I mean you can do physiotherapy anywhere, you can do it in your own house, you can do it in a car, you can do it anywhere. 

But hydrotherapy you need water for, you can do a bit in a bath obviously. There was a consultant once who said to me that because I had such a benefit from being in the warm water, I should have a warm bath every morning before I went to school, which is a bit cumbersome really to have a, be running a bath and sitting in it for half an hour before you've got to get out in the morning. But no I found warm water to be a big benefit, great unstiffener and  relaxant definitely. 

She established exercise routines after hip and knee surgery.

It's a long time of exercises and strength exercises to, to get it right. But it's generally sort of 2-3 months, possibly four that I was, personally, I was over it and it working well then. Obviously with the broken one I've still been able to do a few exercises, they still given me a few exercises to do and strengthening exercises. That's a, you know, a big thing is to get the muscles strong again to enable you to carry your weight. And I use some weights, ankle weights and they give you a little leaflet to tell you all the exercises to do and how often to do them.

But I'm very much a believer in, you know, not being bullied and taking things at your own pace. I know with joint replacements there's got to be a certain amount of bullying 'cos if you don't get somebody moving then their joints will just seize up and stop working. But I'm also a believer in not pushing somebody too much too soon because a) you can cause damage and I've seen people who that's happened to and b) if it hurts too much and it's too difficult people just recoil away from the whole thing, and they, you know, it will put them off doing any kind of exercise at all. But I've, you know, more or less done it on my own done the exercises.

Well it's, what they, what they tell you is little and often. Approximately 10 an hour. I don't think anybody ever actually does 10 an hour. Unless there's some swot out there somewhere who does exactly as they're told.  [Laughs]  But I think that, you know, the general thing is to push it a little bit and a little bit further every time and build it up gradually and as long as you know not to do too little and to, you know. As I say, with the hip it's, it's mainly keeping you moving around as much as possible and doing just movement exercises. You can't really strengthen a hip as such. 

But with your knee it's, it's about getting the, the quad muscles at the front of your thigh working as well and I try and do, I mean I'm always you know bending 'cos you get stiff you sort of bend and move around as, all the time practically but  exercises as a session I do sort of 2 or 3 times a day depending on what kind of day I'm having, if I'm having a, a low day or a bad day then its, 'Oh to hell with it I'll do it tonight,' and 'Oh I'll do it in the morning,' you know. There's still an element of that in me I'm afraid but  yes, it's 2 or 3 times a day, 10 or 20 repetitions depending on what it is. The thing with having arthritis in every joint is that there are a lot of exercises if you do all the joints together you know if you do arms and hands and feet and ankles and hips and you know that's a lot to do all at once.

Has seen many occupational therapists over the years and been given some useful equipment.

Oh yes, of course, yeah, oh god yes, I've seen loads of OTs yeah. Certainly, especially in  in hospital, when you have joint replacement operation, that's one of the team who you will see. Obviously some people need adaptations to their home and things and they come and see you and make sure that you're all right, with aids and things. I've had many living aids over the years  some of which have been of great use, others not so much [laughs].  

Which ones would say have been of the most benefit?

I'm a big fan of the, the picker upper as I call it, or the helping hand, or whatever you want to call it. Oh God I've got a Bath Master that sort of lowers you in and out of the bath, which has been, obviously I can't stand in the shower. Oh and then any number of things, things to brush your hair, things to wash your hair, raised toilet seats I mean invaluable really. 

Obviously I don't, my mother cooks for me, so I don't obviously, don't anything with the cooking and never did really in the kitchen. And a lot of the aids they gave us were for the kitchen, kettle tippers and things like that and  my mother doesn't really want the kitchen cluttered up with all kinds of gadgets for me to just to make a piece a toast once in a blue moon, you know. So they kind of ended up piled up in the attic [laughs]. But no, I mean a lot of them have been very, very useful.
 

Waited several years for hip and knee replacements. Waiting led to increasing disability and her...

Well it was, I think it was 1993 that my specialist at the, specialist hospital that I, that I used to go to, sent me to, you know they thought that my life was being, 1993 I would have been in my teens, they thought my life was being disrupted too much and that it would be a good thing and that I would benefit from it. I went to a specialist centre for young people with you know, joint problems and they did various tests and I had, I had a, I did have a MRI scan before I went and they looked at that and X-rays and examined and pulled and poked about endlessly and then decided that it's too soon, you'll have it done when you're in you're in your thirties and forties, which they got spectacularly wrong.    

Obviously there is a shelf life with joints, they don't last forever so and probably then I would have been 17 or 18 or something like that, maybe your joints haven't quite finished growing or whatever.

And they think, they thought that with physiotherapy and with exercise, that things could get probably not as better as they would have with joint replacement, but certainly significantly better and it was best to put it off for a few years, which at the time we didn't disagree with and we didn't object to obviously then the thought, 'cos I was rela, well not relatively, I was mobile.

I didn't have much of a life outside of the illness but I was better shape than I am now and so the thought of obviously, the thought of two operations terrified the life out of me in fact I was delighted when they said, 'Oh no, no it will be a few years before you have it done yet'.

But obviously with what came subsequently, you look back now, if I'd had it done then and the knees as well probably, my life would have gotten started again ten years earlier or you know. But hindsight is a wonderful thing [laugh] and might well have been that something else would have gone wrong or you know. You, you can never say but it, obviously I've spent a lot of years in suspended animation almost just sort of waiting for the drugs to work or for this work or for that to work. For physio to work or hydro to work  for anything to start working so I that can start living, if you put it in that way.

Her fourth joint replacement was complicated by a broken femur, so recovery took much longer.

But no as I say, generally speaking the procedure, the surgery itself has been relatively straight forward and thankfully, and even though, on the last one they broke my leg, you know. The consul, the surgeon says, that long term it should be no more than a hiccup, no more than an annoying little slow down, which it has been. You know, you think when you've gone through three operations and you've come through them, apart from the little bumps in the road and the difficulties, you think, 'Oh you know it's the fourth one now. You're in the home straight, this is gonna be over with and then' and then they, clumsy little buggers, break my leg. 

Yeah. He said three months and I've looked, as I do with everything these days, I've looked it up on the internet, looked at broken legs and broken femurs and it is the, believe it or not, the strongest bone in the body, the femur and when it breaks it does take a long time to heal. It can be up to 6 months. So I've read on there I don't think it was a particularly bad break and but yes three, three months is a long time but I mean it's been longer than that. It'll be, if they take my plaster off next Thursday, if they take it off and he'll only take it off if he's, he won't take any chances, if he's absolutely sure, it'll be 17 weeks, so that's four months.  

But, you know, no if it, and it's really hard, you, you wouldn't really understand how hard it is, 'cos obviously the, the only, the, the golden rule is you can't put weight on it, don't put weight on it, don't. But it's really hard when you, even if you're just transferring from bed to chair not to put your weight down. Your brain, your whole body's geared towards putting the foot down. So you have to be really quick and 'up swivel and down' sort of thing. But yes, its a, I think it's a, a bone that takes a, a long time to heal at the best of times I suppose, when your bones are relatively healthy which mine are not. 

The RA got worse when she was a teenager. It affected her psychologically as well as physically...

And then just as I came into my teens, it started to get worse progressively, which is probably the worse time for it to get worse. They tried just about every drug that I think it was possible for them to try including some that upset my stomach and one I took made my eyelashes and my eyebrows fall out and my hair as well. And just progressively got worse and worse and obviously it affected me psychologically a great deal. Your teenage years are not a time, generally, when you feel very comfortable in your own skin, but for me it was a lot worse and that combined with the illness, I sort of progressed, as time went on stopped going to school. I had to have home tuition for my education. 

Rheumatoid arthritis has affected family relationships, and made life 'immeasurably' difficult.

But no, it's probably been one of, aside from the illness itself and the pain and the stiffness and whatever, probably been one of the worst things I think about having, being disabled is not having to be dependent on whoever, whether it be on the state, asking faceless bureaucrats for money or whether it be on your parents, whether it be people that you love, having to see them as I have had to, you know, running themselves literally into the ground to look after you, when they should be, you know I'm nearly 30 years old, they should be putting their feet up and enjoying the last, you know, not the last, the next few years of their life [laughs]. Oh God, don't show my mother that. 

But you know they've had to, they've had to take care of me and it's put an awful, it's not really, it's a group thing, this illness. It's not, as a lot of disabilities are, it's something that has affected all of our lives and all of our relationships inevitably in, in huge ways. It's been immeasurably difficult. 

To obtain benefits she needed a doctor's examination but found it 'dehumanising'.

But as I've gotten older, it's the most dehumanising thing. I don't understand for the life of me why people would want to claim benefits if they don't have to, because many's the time I've had the doctor come here and they sit you down and they ask you the most embarrassing questions about whether you're incontinent and all kinds of things and, you almost feel like you're begging for money,  which I absolutely loath I mean it would just be the greatest thing to tell them where they could stick their money to be quite honest [laughs]. I genuinely don't understand why anybody would want to live off the state if they didn't have to. 

It's so much easier to go out and get a job than have to plead to some doctor that you've never met, obviously it can't be somebody that you know, somebody you've never met in your life and try and explain to him in the space of half an hour, or hour, all the difficulties of you life and why you deserve this, this benefit or that benefit.  

And you know, you have to, it sounds awful, you sort of have to lay it on thick because you know, looking at you, it's very difficult to see what you're problems are. You have to talk about the extremes of, of your illness and your disability and that is, as I say, it's obviously be examined and now, I mean as a grown woman, you get used to it simply because it's happened so many times but when you're a teenager to be poked about and told to lift this and take off your clothes to just your underwear, to a doctor, a male doctor in most cases, is mortifying.

And I would, I'd get very angry and 'Why do they have to check up on me?' 'Why can't they go check-up on the you know dole dodgers and people who, you know, are claiming housing benefit and claiming the dole when you know they 're cleaning windows and painting and decorating.' I would get very, very angry and my mother would just say, 'Oh you know, it's got to be done. It's a means to an end', which is, is perfectly true but  it's not something I would do or want to do in a million years, if I had any other choice.

Depending for help on her parents was hard, especially having to fit into their timetable.

I definitely would say the most difficult thing is that, every single physical task is, is made more difficult. And not only that but when you are dependent, which I am at the moment, I haven't always been but I am at the moment, you rely on, you go to everyone else's clock, to an extent.

My mother and father both work I have to go to the toilet in the morning before my father goes to work. I have to get up at half past five to go at quarter to seven, go to the toilet before he leaves for work. I've sort of trained my bladder to be, to be still all day till he comes home. And then I have to go to the toilet at night at a specific time so that he can go to sleep to get up the next morning. And, you know, they don't have much of a life, they don't have much of a, a social life but they, as I say, they work and they've got to go shopping and do what ever and obviously they try and accommodate me a lot but to an extent you're going to somebody else's timetable. 

Has to wear flat, wide shoes but would like fashionable, supportive specially made shoes.

No, I do have a lot of trouble getting shoes, to be fair. But you can get ones now that are extra wide fittings and things. So I tend to go for those rather than having a pair made. I mean I would love to have a pair of shoes made for me that were fashionable and that were nice. 

But not to have a pair of shoes made for me where the only goal was supporting your feet and it doesn't matter what they look like and that sounds terribly vain but probably a lot of people would feel exactly the same way I would imagine. And I've never worn, couldn't wear high heels or anything as drastic as that and my shoes all have to be flat or with a slight heel and wide enough because my toes are sort of a bit deformed and my feet are a bit bony. But and they usually have be slip-ons because it's easy to get them on and off.  

Uses the internet to buy aids, including a power socket remote control, and other items related...

I have actually, I use  Westerns, Westerns.com or westerns internet which is a, and I've actually gone on there to look for a specific thing and ended up buying other things that I didn't realise existed. You'll be amazed at the amount of, 'Oh I didn't realise you could get a thing for that.' And 'Oh look at that I didn't realise you could get that.' And I mean they, Westerns, the one I just mentioned have, seem to have a huge range of all kinds of not just aids but  anything that might possibly be related to illness; creams, things for the body, exercise stuff, everything.  

I don't know there are loads of, I've found loads and loads of web sites that sell aids and it, I mean it's a, it's a good place to look for things like that because you, you know, there aren't a lot of aids shops if you like, you know, if you can't or don't want to get them through the social services. And you haven't got to struggle out and whatever, you can just sit in the comfort of your home or the library if you don't have access in your own home. And see what's available. You know, there might be something that you had difficulty with and it wouldn't have occurred to you, you could find help with.  

And the great thing I've found is not strictly speaking a disabled aid but with the warm weather and not just in the warm weather but in the, in the coolish weather I use my, my desktop fan. And obviously if I, if you're immobile it's difficult turning it on and off so I was looking around one day and found this thing where you can plug the fan into an adapter and use a remote control with it to switch it on and off which was only about '20 and was just worth every penny 'cos it, it's something so simple and incredibly boring as that can really, you know, make things a lot better for you, you know, especially in this kind of warm weather. Rather than having to, you know, either struggle, or if you can't do it at all you have to ask somebody else to keep running up and downstairs or in and out of rooms to, to help you all the time. As much you can do yourself the better I think. 

Had joint replacements under spinal block anaesthetic rather than general.

The first time I was relatively active minded I like to know lots about everything. It was interesting seeing what they do and people flitting around you and you are the centre of attention and I always like being the centre of attention [laughs]. It didn't trouble me, my father was, as I say, horrified, you know, the thought of me being, laying there awake. But somehow, it seemed to me as less of a big deal, even though you'd find that difficult to believe with surgeons and hammering going on every minute, but it seemed somehow, because I've spent most of my life lying on my back, while doctor's pulled this and pushed this that way and the other way.

It seemed like less of a, less of an operation, more of a procedure then, if I had it done that way. It is difficult to getting in, the spinal in the first place, you have to curl up in the fetal position and that can be of difficult. And you're always under the threat, and it was threat to me of, if they can't get it in, if they can't find the right space in the spine for it, then you have to have a general anaesthetic. They have to put you to sleep and that was always a, as I say, a threat for me. 

But no as I say, the last, the first two, it was you know relatively trouble free. It varies a little bit from time to time. The first time I was a little bit worried because I could wiggle my toes and I'm lying on the operating table and I said, 'I can wiggle my toes, is the OK? Does that mean I'm gonna, you know, they're gonna cut into me and I'm gonna feel it?' 'No, no, that's fine.' Just depends on how much of the juice they give you. 

But the second time, I was literally paralysed I couldn't move a thing and it really, it's not a very pleasant feeling at all, you know. You trying to move your foot and it just won't move. So that was a bit unsettling. But the first two were fine. The last two, I had believe or not, some pain 'cos they put a, I presume they still limit the blood flow, they put a tourniquet on the top of the thigh and obviously towards the end of the operation, and particularly on the last operation, where they, because my bones are so soft they broke my leg, and obviously they had to put a nail in my leg and that too longer. So I think the epidural was literally was running out. So it was, not stabbing pain but more of a dull ache, that wasn't very pleasant, the last twice, toward the end of the operation.