Interview 22

Age at interview: 40

Age at diagnosis: 2

Brief Outline:

Diagnosed 1964 Juvenile Chronic Arthritis. 11 years of steroids limited growth. NSAIDs 'til age 37. Now Methotrexate 10mg/wk + folic acid, daily Prednisolone 5mg, Naproxin 100mg, Niozadadine (anti-ulcer) & iron. 2 hips replaced age 26 & 2 knees, age 30.

Background:

Unemployed due to redundancy at time of interview but commencing new part time admin assistant job shortly. Single. Shares accommodation with flat mate. Personal assistants paid via direct payment. In receipt of Disability Living Allowance. Member of Arth

Aged two she had painful joints, developed a rash and high fever. Juvenile Chronic Arthritis was diagnosed.

Now where do I start? I developed, I've actually got Still's disease, or Juvenile Chronic Arthritis, as it is better known as, which I developed in 1964 at the age of 2' years. I don't really remember much about it obviously because I was a child, all I can remember is that my Mum said that in the evenings, as I used to get undressed I would be crying because I couldn't, I found it very painful and she didn't know why, and then the next day I would wake up and I would be fine. She kept taking me to the doctors, but obviously in the daytime, and of course I would be running around because I would be fine. 

One particular evening I think she said that I was not, seemed to be crying an awful lot, I had developed a bit of a rash and she decided to call the doctor out into the evening, quite late at night. The doctor came out, said there was obviously something wrong with this child and I was admitted to a local hospital where I live, to find out what the problem was. 

I was actually in my local hospital for four weeks, they didn't really know what, they didn't know what was wrong with me and I had raging high temperatures they did think I had rheumatic fever but they weren't sure. 

So after four weeks they then transferred me to a hospital that was about twenty miles away, which was a children's hospital and after three weeks they diagnosed that I had Still's Disease or Juvenile Chronic Arthritis.
 

Makes sure she has regular blood monitoring at the hospital.

You have to go for regular blood tests and I was paranoid about, that I go for my blood test on time because I'm thinking if there is any sign of it affecting me I want to know as soon as poss. But some people, my friend goes as and when she remembers, I'm in my diary, at the beginning month I'm at my doctors for my blood tests.

And have you ever had any problems reported?

No, no, I've been on it for two or three years now so there's been, they haven't contacted me, I see the doctor quite regular, so it's not affecting me. 'Cos it shows, it can damage your liver so they check it regularly to make sure it's not showing liver damage and I make sure I go. And I've actually got quite difficult veins as well and they won't do me, they won't do me at the doctors surgery I have to go to the hospital and I make sure I do go to the hospital and have it done.

It's in my little diary - star date blood test which perhaps when I was younger I might not have done that I'd have thought 'oh what the hell a blood test', but I've become much more responsible about my arthritis as I've got older. Because I've had it so long you become blas', and you think 'ooh' but as I've got older I've thought Oh God this is, you know, this is a thing to be careful about you know. I mean I am aware of living life to the full sort of thing and trying to do, making the most, don't put off today, you know I live for the moment which can be bad really but can be good.

Describes the improvement immediately after her knee replacement operation.

But it was just a fear thing really, and it was very very painful the knee was more painful than the hip but the physio afterwards isn't as painful  because I can remember the first time they ask you, they come to your bed and they ask you to bend your knee and I was petrified about bending my knee, thinking 'oh my God it's going to kill', and I bent my knee almost immediately whereas as it took me twenty minutes before to bend my knee, so when he said 'bend your knee' I was thinking, I was waiting for this pain that I used to get and I looked down at my knee and thought 'oooh', and I was like 'Yes!' you know and I was absolutely made up.

Yet a lot of the old ladies down the ward were going 'oooh, ooh' and you know, and they had about 90' bends within a few days and they were going 'oooh the pain' and you're thinking no, so it's your own level of tolerance because my knees were so bad they could have put whatever they wanted in, I mean I remember the first day I stood up after having my knee done, I put my foot to the floor and my knee used to go 'creek', and you could hear it crack and it would take me a couple of seconds, minutes to actually lock my, to make it go straight to stand up.

And they got me on the end of the bed, stood me up and I was waiting for it to 'creek', and I thought 'oooh' and that was it, I said 'hey this is ace' I was like, you know I was like I'd won the pools. And I was told to sit back down again in case I did too much, I was like 'what?!, this is wonderful' you know, but that was my perception of it because of what I'd been through, it might not be,

And how much bend did you have in it?

Not much at all, when I, before I had my knee replaced I had 4' which was like 'creek' blink and you missed it, I've only got, I've only got about 60 or 70' which is not very good for a joint replacement but considering what I had they're happy with it and so, I would like 90 but I wasn't disappointed that I didn't get 90 like a lot of people do, but you know, that's life in'it.

Didn't like her scars and ate lots of Vitamin C rich fruit to heal them.

I also wasn't too keen on the scars either because I wasn't very old and it was a psychological, I felt a little bit disfigured by them, I still don't like the scars now but friends say that they're not that bad, I don't know what you're worried about but to me I didn't like the, the scars, I didn't like it when they actually showed it to me afterwards I've only ever seen hip replacements healed. 

So I'd not seen what it looked like before it healed and when they actually showed it me that upset me and I made them keep the bandage on it so I couldn't see it, and then I became obsessed with healing myself and making the scar go back to, you know heal, and I read all these books on fruit, what sort of fruit is good for vitamin C for healing and I had, what did I call it? 'Heal the scar fruit bowl', I had a fruit bowl and I had everything.

Kiwi fruit's very good, full of vitamin C, so I was eating kiwi fruit like there was no tomorrow to try and heal myself, I did everything I could to make myself get as better as quickly as I could, I did the physio what they said, if they told me to get out of bed so many times a day I did it, so I made sure I was, basically because I hate hospitals I just wanted to get out of that hospital, so I did everything that they told me to do. I even tried to get me stitches out two days earlier than I should have done, because I wanted to go home, stupid but that was me.

I mean I've got a friend that goes out and has had a shoulder replaced and goes out there with her shoulder showing, whereas I'd be, I'm probably a bit 'oh I'm not showing my scar off' but that's me I think, but if it doesn't bother you, I think as you get older it doesn't bother you as much, because I can remember being horrified at my joint replacement scars and the doctor saying 'oh, you young ones, never like them do you'.

Whereas the older patients of seventy and eighty couldn't care less could they, I remember him saying that to me 'oh these young ones never like their joint scars'. I mean I cried when I saw me, my scars when I woke up, I thought 'oh my God' when they took the bandages off and I did I cried. 'Oh, disfigured, horrible' you know, but it did heal up and I kept thinking, do you want that scar or do you want to not be able to move and I thought well have to have the scar really. And you know what I mean that was my choice, but you know you have to talk yourself through these things.

Was given good advice before her hip replacement that she should not compare her recovery time to patients with osteoarthritis.

One bit of advice I was given when I went for my joint replacement for my first hip, and it's an advice that I've had in my head, and every time that I was feeling down, I listen to this advice and what it was is that osteoarthritis patients that have joint replacements recover far quicker, they are up and out of bed far quicker than people with rheumatoid because they just perhaps have a couple of joints that are affected, rheumatoid is an all over condition that every joint is affected and you are not as good, and I can remember a friend said to me that had a joint replacement, don't look at the osteo patients jumping out of bed and trotting off down the ward, she said, look at the rheumatoid ones, who won't be as good and she was exactly right. 

The ward was about thirty six beds long, most of them were osteo patients in their eighties and seventies, up and out of bed up and down the ward, struggling, but they were there, and there were perhaps four or five rheumatoids and all of us were on the beds so many days later and struggling getting out of bed, and I remember thinking, 'hang on  they're osteo', because you compare yourself and you think, 'gosh why aren't I as good as them?'. I did more so because I was only twenty six and they were seventy and eighty, and I'm thinking oh my God look at that old lady out of bed, up and down the ward, so I kept thinking 'Hang on they're osteos, they're osteos' so take no notice, the osteos are up and down the ward like the billyho so look at the rheumatoids.

And how long did it take you to sort of beetle down the ward and?

I never really did. For me because I had problems with my other hip as well. So, and I was quite ill before I actually had my joints replaced, I had been bedridden for months on end, so I was very weak as well, so I was perhaps not your norm to have a joint replacement.

And I did find that the nurses tended to, I was in a general orthopaedic ward, which I think that's what happens a lot, and they're there, they just see the one joint, they do actually have rheumatoid wards which I think is a lot better if you can go in one of them because the nurses are trained and know that you are, that you're rheumatoid and that you are not going to be as good, they had, in the ward that I was in, they had, after four days your were up and you had to walk to the bathroom to have a wash, well after, I couldn't, after four days I wasn't well enough to have a wash, it was too long to walk, you had to carry your soap bag, which of course I couldn't carry my soap bag because my  hands were sore, so I was allowed to have, to be washed, a bowl to my bed and I can remember some of the older ladies saying 'why is that young one getting a bowl to the bed and I've got to walk the ward', that sort of think you know. So I can remember that. 
 

She found homeopathy was available on the NHS but it didn't help her arthritis.

I've done homeopathy which didn't do anything for me at all. In fact I kept forgetting to take them, tablets because they weren't painkillers, so I tried that for a while and then I gave that up. And it was, to actually get your tablets you had to travel to a hospital, which was about an hour away and I thought, I didn't feel I was benefiting.

Was that an NHS homeopathic hospital?

Yes it was yeah, and I didn't actually know the NHS did it, I thought you had to pay for it, so I didn't actually do it for a long time, and then I found out through magazines, like I do, that it's available on the NHS, found out where it was and went along and tried that as well.

And what did they do when you got there?

They just, they chatted to you and talked about your condition, talked about your lifestyle, what bothers you, what joints hurt and they just gave you, recommended these tablets and you used to have to take them so many times a day. I didn't find it worked for me, I stopped them and never noticed anything.

Were you taking them as well as your anti-inflammatories.

Yes, but I didn't find it beneficial at all for me. It might be to other people, but for me it was a, I didn't bother, it was just another load of tablets that I had to take on top of what I was taking. So I just, because there were quite a few that you had to take and I thought oh, I can't feel any benefit with this and stopped it and still didn't notice any difference. 

She thinks spiritual and Reiki healing are helpful even if the benefit is only psychological.

And he did all this hoodaloodaloo and do you know what, I'm not being funny but I did feel better for days after that. And I know it's only, I mean and as a child you're not going to think that, but I did, and I did believe and I still do believe in that. I have been to others since where I had pains in my shoulders and this chap that my Dad knew did a healing on me and my shoulder went better almost within an hour, now whether that was psychologically I don't know,

I've been going back to Reiki healing recently yeah, so, I mean some of them you can go to Reiki healists and they charge you quite a bit of money, but there is a local group in our area that let people give a donation of a pound or whatever you can afford and I've started to go back to that. And I always feel better, but I don't know whether it's psychological, but I don't care. [laughs] Yeah.

What my Mum says to it is, 'I thought you'd given up trying to heal yourself', I'm thinking 'No'. What she say to me, because she doesn't believe in it and it quite hurt me actually, because she doesn't believe in it, she said, 'I thought you'd given up trying to be healed, you know, can't you accept you're not and I said, 'Hey Mum if it makes me feel better, psychologically better for a few days, what the hell.' You know so I take no notice and I go. But it's not for everybody.
 

She used to enjoy going to the gym but had to stop because her joints were suffering.

And I actually got the taste for, which is really stupid, I got a taste for going to the gym, you know to the normal gym and that's where I didn't do myself a lot of good, because I improved all my muscles and then because my legs and muscles were a lot stronger I started to walk about more and my hips packed up.

So I mean, I had been brought up as a child to, you know physio, physio, physio, physio, physio and I think you do become obsessed with physio and I still look at muscly arms and legs and think, I'm paranoid about them you know thinking, 'Oh God, I wish I was as muscly as that, because strong muscles make healthy bones', and that's what I was told, its like an inbuilt indoctrination of it. So I did go to the gym for nine months and God I did feel well and my muscles were dead strong and then I went a bit mad actually I went like one of these adrenalin junkies and that's when my hips started to, sort of not be very happy.

And what were you doing at the gym?

I was  doing sit ups, up the wall, I was up the wall on the. I used to go out with the lad in the gym and he got me into it really and I went along to the gym with him, I couldn't do much, I mean you know, but I was there with all these big muscly men doing little tiny sit ups and me you know, but I loved it and it did make me feel well, because my legs were stronger because my muscles were stronger and I felt really good and I did it for nine months and then I got stopped, told it was bad, very bad for me, which it was because I was putting excess weight on your joints that can't really stand it.  

She thinks that her disability made it easier to get some jobs.

I've been abroad, I've, I've had good jobs, sometimes your disability can work in your favour, you're actually, they have to take you on because you have a disability and that has got me some good jobs in the past. My job with British Telecom they had to take on a certain quota of disabled people, so I got a job. Whether I got a job because of my ability I don't know, but at the time I thought 'well I've got a job', you know so. I believe in using my disability to get perks when I can get them.  

And you know, since you have been made redundant have you been for a few interviews or ..?

No this was my, this was my first interview. What's happened was, because I can only work limited hours, I found it very difficult to find work that would allow me to do them limited hours, because a lot of them want twenty hours or full time, so there's been very few jobs I, I could apply for.  

What I did was again, through speaking to other disabled people a friend of mine told me about an organisation that specialises in finding work for people with disabilities and will send you, instead of you scouring through all the papers, they will regularly send you jobs listed and they sent me, they sent me various jobs, loads of them, that I just poured through, I didn't have the energy to go through the papers.

I did do that as well and I did do my own research, go to the job centre, go to staffing agencies and this particular company sent me a job and although I did see it later advertised somewhere else, and through them I saw this job, applied for it and apparently if you have a disability you get a fifty pound grant towards if you get a new job, which you don't get if you are able bodied, do you know what I mean, so I thought, ooh, so I actually found, I got accepted for the job yesterday. I'm a little bit nervous obviously about going to a new job, after twelve years, but I'll see how I get on. I suppose nearer the time I'm going to start get anxious. So I have found another job.

Explains how the social services Direct Payments scheme works, which gives people control over how they spend the money.

I have now gone onto the direct payment scheme, which is a new scheme where they provide you, Social Services provide you with a carer or a personal assistant as you call them, they're not really carers, and I have somebody in that comes in and helps me with my housework, helps me dress if I need assistance and since that moment I have been a lot better because I am doing less around the home, I was struggling to hoover, do things, and now I've got this person in I don't have to do anything and I have been a lot better, and I think mentally as well because I am not worrying, gosh how am I going to cope with this, how am I going to do that. So I think sometimes stress can bring on, I think for me stress brings on a flare up. So since I've had someone from the direct payment scheme my life has improved and I feel better. 

'. after my joints deteriorated and then I went to work for a local disability place and it was them that told me about this Direct Payment Scheme and when I spoke to quite a few people with disabilities, no-one's heard of it, its not very widely, in fact you can ring Social Services up and some of their advisors say what's that, and I say well you actually run the service. So it is, but it is out there they will assist, if you need the assistance.

Do they call it Direct Payment '

Yes Direct Payment scheme.

'because you're sort of choosing when to have things?

What they do is Social, you're, you're given Social Services come out and assess you and you decide on the level of care that you feel you need and then they say we will allocate you twenty two hours a week or whatever and with that you can decide, you employ your PA, they give you some money each month for you to find the PA, it covers advertising costs, or they themselves can give you a carer, but that's from an agency that really you don't know who is coming in from day to day, so older people perhaps would prefer, they don't want the hassle of trying to advertise for someone, but for me, being a younger person I wanted to be able to know who I was getting each day and get to know the person, because often they are doing quite intimate things, that you want to know them really. So I chose to do that option.

And did you find it difficult to recruit somebody?

At the time, I've been on it three years now and I didn't. I found people to recruit, but I would like to re-advertise and find another PA and I have now found it difficult to recruit.
 

Explains why she decided to get a car through the charity Motability.

But I didn't use Motability for a long time, I, I bought the car in my own right and paid for it out of my mobility allowance, it wasn't until I got older that I decided that Motability seemed better for me, and I went down that avenue of doing that. And I've, I think I've had three cars now on Motability, which I have found no problem, but it doesn't suit everybody. And also you've actually got to get DLA for three years as well in order to get a Motability car. So if you are one of those people with arthritis that only gets a two year award of DLA, you can't have a car with Motability.

But you get some money that you can use towards transport, [Yeh but only for the 2] but not a Motability car?

Yeah, but I know that's a pitfall for some people with arthritis, they get a couple of year award and can't get a Motability car because it's a three year award.

And why did you change, what benefit was it for you?

I decided that the problem I was having was that if the car broke down, I had Uncle that was a mechanic who stopped doing mechanical work, so it was taking the car to the garage it was costing me, the car was old that I had, five or six years old, my first car and I decided that Motability seemed better because they repair it immediately, they come and collect it, thy pay the insurance, it's worry free driving and that's what I wanted. And I didn't want my car off the road for days on end because you know without the car I don't go out unless its taxis which of course are expensive.
 

She joined a Young Arthritis Care support group which helped her greatly.

One of my, the best things I did was actually join Arthritis Care, which I didn't join until I was quite old, in my twenties and that I would say was really good for me because it meant you could become a member of Young Arthritis Care and we actually, I actually was a founder member of a Young Arthritis Care group in this area, and I met quite a few people with arthritis that were younger and that to me was really good a really good turning point. 

Some people with arthritis don't like to do that, but that's mainly because I mean, perhaps they don't want to go along to a group and hear everyone talk, moan about arthritis, but I sort of went along and did mine and just switched off to people who moaned about it and sort of chat to the positive ones really and find out how they overcome, what they've done. But from our group a lot of people sort of were picking my brains because a lot of them had perhaps got it in their twenties and I've had it so long, so they were sort of picking my brains as to how, what I'd done and what tablets I'm on and that sort of thing. So you just learn from each other really.

And what sort of things happen in the support group, apart from just talking to each other?

Well we had a lot of the stuff in the support group we did, we went out on days out, we hired a tail lift coach and went down the coast and tried to make pleasure things, but then we had a lot of talks, we had a talk by a local Rheumatologist who came along and talked about how to manage the condition, we had a talk by a physio so that was quite interesting. I would only say for people that are newly diagnosed, for people like me that had it as a child I didn't really want to hear about physio because I'd done it and been there. 

So, but you had to cater for all the people in the group. There weren't many of us in it because obviously there's not a lot of young people in the area and the group was, it was sixteen to thirty five I think it was, Young Arthritis Care but they've now expanded to forty five, so after forty five I don't know what happens [laughs]. Actually a lot of us, I think they might have done it to forty because a lot of our group folded when quite a few of the members became over forty, and we were all classed as too old to be in the group and it folded.

But presumably you were all quite keen to, sort of, still meet or?

Yeh, well a lot of the people I do keep in touch, I, a few of the people I do keep in touch with, we are now friends, but some of them have gone along to the older group, the Arthritis Care group in our area, which apparently has over a hundred members and I have been a few times, but it's full of old age pensioners that have had it for five years and come tottering in with a stick and say, 'Oh I'm gutted I can't'gutted I couldn't do my two mile walk today', you know that sort of thing. So I thought 'oo whoopee do' you know, so I did, I have tended not to go to it to be honest. But it is quite a thriving group and I sometimes get the programme and I look through and see if there is anything that I find of interest, but obviously it's not listening to your local Rheumatologist or I mean for me it wouldn't be, to be honest.

Recalls her distress when a doctor presented her to other doctors as a child 'grossly deformed with arthritis' and another described her joints as 'mini'.

And I remember being referred, the first time I went to get assessed for my joint replacement, the doctor rang up and said 'we've got another 'mini' for you, how soon can you get a joint', and I did not like that, I do remember that. So I think the doctors themselves can actually enforce your belief. 

I have had, I can remember going into case conferences at the age of thirteen in front of a whole load of doctors and saying, 'Here is a child that is grossly deformed with arthritis' and that sticks in your brain You think 'God, I'm grossly deformed', you know, I don't know whether it's got better, but as a child growing up that's what they said and did, hopefully that's got better I think, 'cos that again reinforces your belief about yourself, I mean, I never even thought I'd get a boyfriend, it didn't enter my head I'd get a boyfriend, because I was made, I grew up thinking, 'Oh I'm not going to get a boyfriend with this illness', which is not the case, it's stupid. 

And I think how you feel about yourself comes across to other people, if you don't like yourself and are timid, people are attracted to you and I grew up, when I was younger, being a lot more sort of timid and I have had lots of knocks backs from men, and I've gone home and cried my eyes out
 

Her doctor advised her to stop drinking alcohol, but this affected her social life.

I've had to go back onto the steroids, which I am quite disappointed with and also another stronger drug as well, where they have to monitor my liver, which has stopped me drinking alcohol, which is a damn because I love alcohol so.

Well I did cheat on Saturday night and I was ill all of Sunday. So it does make you, that is probably one of the side-effects is it can make you vomit, which it does, so.

Have you talked to your doctor about an alternative that you can drink alcohol with?

I have done that and she said that the drug that I am taking is the strongest and most effective for the flare ups that I've been having so I've tried that, yes. But I've sort of done, sort of like a lot of psychological, thoughts to myself, like I've been thinking, looking at alcohol and thinking 'do you want that, or do you want to be well?' So I've sort of, sort of looked at it and said, don't, thought I'm not going to let that little bottle of fluid keep you from being well, so I do a lot of that to myself, but every now and then I do think, 'Oh God this is hard' and it has actually altered my social life quite a bit because I try and do other things which doesn't involve going to pubs, because it's very difficult to go to a pub and sit there with all your friends, that you've been drinking with all of your, most of your adult life, watch them all have a few drinks and you can't, you've got to sip water, or drink coffee. And I have found that quite hard, but I tend to take my car and that stops me, if I haven't got my car I do find it difficult to resist, and I have found I'm best having none than just two.

Does two make you sick or?

Yeah but I don't stop at two.

Suggests that people must learn to change, perhaps work fewer hours or give up work if necessary but remain busy.

I do think it's, with arthritis, it is good to be busy, because if you're off or you're not working or even if you don't work you do voluntary work because it gets you into society and stops you dwelling on how you feel and what's affecting you and I've enjoyed, I did initially, I was very upset when I got, had to finish with my employers on medical grounds, I had to retire quite early and I though 'oh my God this is awful' and then took part time work and actually enjoyed part time work because I had time to work and time to be off, so I was quite happy about that, although I wasn't at the time. You've got to learn to change, perhaps change your working patterns, work less hours, not work at all, work voluntary, but I don't think it's a good idea to sit around the house all day long. For me it isn't.

Was pleased to discover books about arthritis including one on physical relationships by Young Arthritis Care called 'Lovemaking and arthritis for younger people'.

I do wear a hand splint at night on this hand, which I have done since I was twelve and it's now part of my little, obviously I have had my hand splint replaced, but it's quite attached to me that hand splint now, and I do, I did find that when I was younger, if I had partners that didn't want me to put my hand splint on but now I'm thinking, I don't care now.  

And they've done actually, they've done, it's been quite good cos, Young Arthritis Care did a book on 'Lovemaking and Arthritis for younger people' and that was really good, I found that a really good book, I sent off for that and I really found that a very positive book. I did, where I worked we did research on sexuality and disability and part of my jobs, one of my jobs, which was a great job was I had to ring up all these disabled organisations and ask for all their literature on sex, so I kept getting all this literature in work with my name on it and I bet they all thought what a perv she is you know. 

And I had, I, there was a few of us that had to do it, one of us had to read a book on 'Arthritis and Sex' one of us read a book on 'Spina bifida and Sex' and the Arthritis Care Arthritis book came as the top, it was really good, it was done in a positive, informative way and I thought the book was ace, was really really good, and I've also read lots of books on coping with arthritis how other people have coped with it and written books, I've read a book about, I've read that too.

I did read a book about hip replacements but I decided it was too depressing and told me too much and so I didn't bother with that one, so I've read lots of books as well on arthritis, but all of them I read are really how to cope with it, because I want to know what people have said and done and they feel the same way we do.

(Publication available now is' 'Our relationships, our sexuality').

And when you hear other people saying what you're thinking, it makes you feel better, it does, because otherwise you think you're on your own don't you? So I recommend the Arthritis Care book on I forget what it's called now, but it's a really good book, it's really inter, it's a good book if you're able bodied actually! [laughs].