Interview 23

Age at interview: 38

Age at diagnosis: 21

Brief Outline:

Psoriasis age 17. Rapid onset RA diagnosed seronegative '86. Various DMARDS tried and complementary therapies/diet helped. Stroke '00, blood disorder & Sjogrens. Currently Steroids, Dihydrocodeine, Vioxx. 2 new knees/1 hip/2 shoulders & right thumb fusion

Background:

Unemployed catering consultant. Cohabiting with partner.

Thought it was only a temporary illness but felt she could deal with it once it had a name. Didn't want to imagine the worst case scenario.

I'm sure, I don't think I went, I don't remember thinking on my 22nd birthday, I feel lousy and I'm going to the doctors and I don't know what it is, and I think, I don't think I was frightened of dealing with whatever it was, I think I thought I'll be better in six weeks, it'll be, it's only like a virus, you'll be better. It's like when you have a headache, you'll be better in an hour because you've taken tablets and it goes. I never thought there's something else deeper here and I can't deal with it.

So when I went and had some tests, although I thought what am I dealing with, I thought as long as I know what I am dealing with, I can deal with it and so when he gave me the name, it was a seronegative rheumatoid arthritis and I thought right, I hadn't got a clue what it was. But you know the word arthritis you just think of the the little old ladies with it, and I thought 'Oh I'm not going to die' but I know what to deal with now and you go away and although at the time, you ignore it, you've got the label but you'll just stick it in that box and I won't deal with it now, its, I'll just push it to a side and that's what I did I think, I just thought, I didn't want to, I didn't want to see what it would develop into and I think a lot of people are like that you know I didn't want to see what I was going to become.

I didn't want to see somebody in a wheelchair, with the joints all deformed and I didn't think, I didn't realise how bad you could possibly get either, but and I didn't realise how the positive side of it as well, but I thought I didn't want somebody to influence how I was going to become, it was like somebody saying 'Well if you take this tablet the side-effects are going to be blah this', so some people, I'd rather not know and find out later, so I'm going to be a bit sick, but it's a side-effect of that, now that's okay I don't want to influence what it's going to be. I rather do it in my own way.
 

Successfully chose to do strengthening exercises instead of having joint surgery.

At the end of the day, it's down to you, if you really seriously want this operation then you know it's, they're not going to do something that you don't want, so you just have to weigh up if its really going to be beneficial to you or not so yeah. It's funny how at one point they were going to do an operation on my feet, and I think they remove bits of bone from the feet, and I thought I just don't want this, I thought surely if I can just do some exercises and just strengthen you know, show me the exercises I'm supposed to do and I'll try and, I'll give myself like a six month period to try and do whatever it's got to do and see if that will help, and if that doesn't help right then we'll do what you're suggesting and I often find that that, it helps, it's the way, you know I've been fine, so if I go through bouts where the bones I feel as though they're beginning to drop again, then I sort of. I persist with doing certain exercises, and you know it holds the old skeleton into place and it's that balance of keeping active and managing the flare ups and I know of a winter time when you're not so active the muscles, you know start getting a bit slack and you get repercussions then from the joints.

Was not being regularly monitored by her rheumatologist so changed hospitals. X-rays taken by the new consultant showed considerable joint damage.

The hospital wasn't right, it was the things that they were saying, I knew what tests I should be having, not what type of tests, but I knew you were going to have regular tests, there was blood tests and bits and pieces and X-rays just the general MOT of what was going on with the body and this just wasn't happening and I was going through such regular flare ups, and I thought somethings, it was as though there was a flow to it and I said to the specialist one time there's something not right, I don't normally have them with this regularity or this pattern that was developing and she said 'Well we don't need to do anything because we can see the damage is happening by just looking at your hands', and I thought that's a bit odd, because normally they would throw you into the X-rays pretty quick and there was no blood tests done but she said well the next time you go through one of these we'll have you in and we'll assess what's going on.

So I went through one pretty soon after and gave her a phone call and I thought here we go, something's going to happen and they said, they just made an appointment for me to come in and see her within, it was I think a couple of months, and I thought no I'm not happy with this, something's not right. So I spoke to a friend and she said well she said 'there's a good specialist not very far away, get yourself into see him.'

So I went across to see this chap and I thought, 'Oh' you know, and it was just the guilt of having to move specialists again. Anyway I saw him and he's, I've been on the majority of what I would say the secondary drugs and he said right we're going to go and X-ray all your joints and see what's going on and he said you've got a choice of a couple of drugs really and one was the steroids and one was, I can't remember the second one, and so I went off, had the x-rays, came back and he took me into this little room and the nurse was there, shoved up these X-rays and I thought well that's not me, he's got the wrong X-rays here. 

I could see the sort of damage going on with the hip area and stuff, and I thought, no no that's not me and I said to the sister I said 'Are you sure these are the right x-rays? It doesn't look like my X-rays', she said 'Yes', and I said 'No, they're not, they're not mine', and I was waiting for somebody to say sort of say it's a joke or something and she looked at me as though to say she's not getting this, and he came in and he said, 'Well' and he sat down and he was really really nice about it, and he said  'Right we're going to have to go through and replace a lot here, shoulders, elbows, hips, knees and wrists, and I'm thinking 'Na', [laughs] I thought I know I'm in a lot of pain and I know I can't really move around a great deal at the moment but and I thought no he's serious.
 

Is frustrated when physiotherapy referrals specify one joint when the pain may be referred from nearby joints.

So yes physiotherapy has been a good thing but  they only do what they're told to do by the consultants or doctors. The doctor thinks you've got problems with your knees, you need to get that sorted out, then you go and see the physiotherapist and that's what they'll look at is the knee, but the problem might be coming from your feet, you know you might be deferring pain from, your arches might be falling over and it might be foot, feet supports you need that would help the knees and therefore help your hips and your back and the whole thing. 

So I always think if they just sort of said, one, we'll look at the whole body when you go there, you've actually got problems with the knees but can you consider doing physiotherapy that would affect feet upwards. Then you know, I was lucky enough to be in a hospital where they specialised again with Rheumatology, and that's how they worked it. And you used to go to the hydrotherapy pools and you'd work the whole body even though you were probably just going there because you were having problems with yours hips because there's a knock on effect all the way up, so  that's the only complaint. 

I would say with doctors, with the physios, you know if they do get a referral can it be considered that its as, the pain may not just be coming from the knee, although you may not be having pain in your feet, it might be somewhere else that the pains deferred from, so  which they are aware of, but it's funny I've got a referral recently to see, to go to a physiotherapist and the letter comes and you've got an appointment and we shall only be looking at the condition, at the area that the doctors has specified and I know he's specifying the knees because that's what I've asked, because my knees are clicking and because they're replacements I'm a bit concerned that the muscles aren't holding onto the knee sufficiently, so I just want some tips on what to do.

And I thought I know I've got problems with the arches and so when I see her I'll ask her 'How, how, you know, what I can do anyway' and if I need to go back to him to you know, you're playing yo yo all the time so, you know sometimes you get it sorted out fairly quickly and you can get on with it, but there's times when you think oh here we go again you need to learn experience again, put it down to, you know find some therapist, bits of information out.
 

Hoped that the occupational therapist would have been more helpful and provided items that were promised.

I don't think I had a particularly good experience, some people have had a wonderful experience with OTs and social workers and they've helped the necessary people out enormously and I don't seem to have had that  so I wouldn't say it's just my experience has not been particularly great but  yeah.  

I could do with light switches being altered in particular rooms, they've promised to do certain things that haven't got done, they've suggested things and they've never, they've said 'Oh we'll get back to you' and 'We're going to', they were going to put  an intercom thing so that when I was bad and somebody came to the door I didn't have to come to answer the door I could have an intercom and that would be a suffice and that was going to be done and 'We'll get the information for you' and then nothing happens, and you don't want to badger people but you end up, when you've got the energy that's what you spending half your time is chasing up on things or, and that shouldn't have to be the case

I think if, to me, I don't know an OT and social worker should be people who are your crutches that should be adding to your strength they shouldn't, I don't think should be leaving you on the wayside and you know to me that's their job to help you get back to some sort of normality and  quite often, there's a few of us in this area who have actually gone, or informed social workers, or OTs about certain products or things that have come into place, or even care packages that have come in that they've been completely unaware of. 

Now we're finding it out, we've found out about it years later so surely they should have been finding out when it was implemented, and  yeah  you get fed up fighting for things and  so I would say if you've got somebody who can fight for your corner then grab hold of them with both hands and let them do it for you because it's just wasted energy for yourself to be doing it and so that's another one, delegate that, yeah.
 

Explains feelings towards her joint operation, not wanting to know details and seeing it as a positive step.

But my knees were, oh horrendous so but no I was I didn't want to know about the operation it was one of those people, some people want to know everything about it, every little detail and watch the videos and stuff and no and I've got a partner who's gone through things and the infection side of things, and I just thought I'd rather put cotton wool in my ears and rather not know about certain things. 

But no I wasn't fearful, I, it was funny, the more operations I had the more I didn't look forward to it. I looked forward to it in a positive way, I'd make out, it's funny, I used to go in to get a, it was like I was going in for a makeover, I treated it as that, so I'd have a new joint, so I'd have a new outfit to come out with and when I had my knees, when they were doing my knees, I hadn't worn trousers for a long time and so to have a pair of nice black trousers on when my legs were straight, that was, it was just fantastic, so it was like a glorified plastic surgery [laughs]. So I tried to be positive and I'd do things within the hospital, I'd take things in that I'd enjoy doing. 

So rather than sort of think about what the operation was going to do and how poorly you were going to be for a few days through that I'd sort of rather take, I'd take in some bits and pieces I was going to do or read, or catch up with friends with letter writing and that so I'd look forward to it in a way, as though it was a bit of a break. God, I can think of better ones but you know, but that was okay, yeah. 

No I wouldn't be frightened at all about having a joint replacement. It's funny it's such a major thing, and you think they're chopping bits off you and putting metal in you and you know, you sort of say, in some sort of subconscious way you're saying bye to the old bits and hello to the new bits, you know, and it's a funny barmy way you go on with, but you know, I've done far more with these new knees. It's funny before I'd gone in for the knee replacement I thought, I was out in the garden, and I thought 'Well it doesn't matter about this knee anymore now, it's going anyway'. So I was there, and I thought if anyone could see me trying to dig a hole and I felt in absolute agony and I thought, it was just, the sensation was it doesn't care, it doesn't matter now, it's going this week [laughs]. So but it was quite funny, but they've been brilliant.

Decided against having her wrist fused as she wants to keep the residual movement she now has despite the pain.

So but that's been okay, but he said 'While we're there are you sure you don't want the wrists fusing?' I thought 'No', I think for however bad they are and there's not a great deal of movement in them anyway, and they do get extremely painful, but I'd rather have that wee bit of movement in them and put up with the pain you do get, because I just want to be able to do things with my hands, whether it's, I think if they're fused, I don't know how people really cope. I wore my splints solid for a week just to see how I would put up with it, and I thought no, I just want that little bit of movement in there. And I don't think the likelihood, I don't think they can ever do an operation where there would be movement in them, I don't know, I think that it is, I think if they get that bad it's got to be fused, so we shall see. 

Homeopathic remedies helped her arthritis.

I take homeopathic I find that seems to help, even though I'm one of these that sort of sits on the fence thinking 'This should not work' it's not a, 'How does this stuff work?' but I don't know whether it's coincidence or what but something seems to happen there so.

Something in particular?

Yeah I just find that I took some over the weekend when I wasn't particularly well at all and within 24 hours, I, it wasn't just, I noticed a really strong difference so with this particular, cos, it's only just, I've only recently been seeing this new homeopath and maybe she's just been able to find the one I don't know because I've gone to homeopaths before and nothing's really sort of, but somebody recommended this one, so I thought well have a go and it's, it's, I wouldn't say it's dramatic but there is definitely a strong change in certain remedies I have taken recently and yeah I couldn't believe, I've, I've been writing a journal type thing to do with health which is quite interesting because I've looked back over the last 3 or 4 months and it's quite weird how there's reactions to certain things, or certain remedies or certain foods, or certain weather and that's been an interesting exercise to do. 

But yeah, if some people were interested in homeopathic then they explore it and it is available on the NHS as well, so if you've got a sympathetic doctor who can refer you to a practitioner, there are practitioners working within the NHS on it. So there must be something in it for the NHS to support it, it's just finding a doctor that's happy to refer you to.

I'm alright I've got a brilliant GP who's quite happy to do that, cos usually you've explored every other avenue so this is another door that opens that possible can help, even if it makes you sleep a little bit better or remove the anxiety a little bit, then it might have a knock on effect somewhere else, so go for it, have a go, you're not losing anything except for a bit of time sometimes and sometimes it's pennies as well so you need to balance it out, because I've taken alternative with, like herbal stuff.

She avoids certain foods which she thinks make her arthritis worse.

What I found was that if I really fancied a piece of steak, as long as it was organic I was okay and it was, it was, I was fine and I didn't have a reaction to it. If it wasn't then I would be bad, so there must be something within the chemicals that the body's so sensitive to.

Red wine was a thing I couldn't tolerate, but if it was organic I was fine, I wouldn't, I wouldn't have a reaction at all, not even a hangover! [laughs] So that was quite good, I couldn't drink gin but I could have brandy or whisky and that was fine, but it's something I don't even have now I don't even drink but yeah. 

I think it's something that people will have to explore themselves. I couldn't even, one of the things I couldn't even take carrots, that would affect me, and carrots you think what, I don't what it would be within, again may be it's the pesticides, maybe its something I should have explored with the organic, in organic. but yes, people if they have a bit of a flare up, just look back and see what's happened over the, maybe 24 hours.

I used to find that the food used to affect me within a short space of time and it was so obvious that it was certain foods. Chinese meals, going out to eat, horrendous, never have one, you know, I love Chinese, God love 'em but I went out for a meal and I flared up and it was the monosodium glutamate in it so yeah. But some people are fine you know they sail through without food being a problem so but, people say, 'How do you survive, how do you manage it?', I'm thinking well I'd rather have a strict diet, not that it is now, but I would rather have that strict diet and be able to control the pain rather than having a bacon sandwich and know within 20 minutes I'm going to be in bed having everybody looking after me and not be able to move. 

She adapted her kitchen to make life easier.

Equipment in the kitchen I've got left, right and centre, you know I've invested in that and as long as it's in a place where I can get hold of then I'm okay. So I've got liquidisers, magi-mixers and tin openers and knives that are easier to hold, which is a thing for me it's chef's knives, you know trying to get hold of a quality knife that sits in your hand, so what I used to do at one point was sit there and just put string, normal parcel string around it and pad them out with that, because I found that was more secure than putting, some people used to put the lagging stuff off pipes and used to put that and attach that, but I found that used to slip round so string used to really tighten up onto the handle after a while and that was good.

Wooden spoons are great because you can use them for, for switching things on and off with, you know, there's always a wooden spoon lying around somewhere that I had to get to a plug socket and, or reach something. 

Yeah, you get used to adapting things, you know and it's getting, the thing I would do differently in the kitchen would be to have a surface which is lower, so if you're working, like mixing something you're not having to move your shoulders up to bring, you're uncomfortable so if you're working a little bit lower I find it's better to even bend your back a little bit rather than to have the sensation of stretching your upper body, and seating, it's having those, I don't particularly like the what do you call them there's a particular type of perching stool because I find I trip over the legs of those more than I would, it's just the position of the legs of the chair, so I would rather have a normal stool, that I've got that I picked up from a flea market somewhere, and I've got stools around the place that I just, can perch against. 

The Gardening for Disabled Trust and staff from a local company helped with her garden.

I find that there's a great organisation called The Disabled Gardening Trust, they're based in Surrey, wonderful people and I can't tell you how I got in touch with them, it such a, many years ago, because what it was, we walked into a blank canvas here and I love tinkering around anyway and everything was in pots and that's a good thing, even if you just have, I love my terracotta pots, but of course they're heavy and everything, but God yeah it's, so what I did I wrote off to various people and organisations saying 'I've got the ideas but I need somebody to be able to implement them for me.

There was no way I could go out there with a spade and shovel and structurally alter the garden', so I got in touch with the Gardening for Disabled Trust and they were lovely, really good, good with information, good with help, suggestions whatever and out of the blue this telephone conversation happened with an organisation, a company round here and he said, 'We understand that you'd like your garden overhauled and would you be interested in us coming in and using it as a team building exercise'. 'Yes, come in [laughs]. The more the merrier we'll soon sort'. 

So they came across and they, we had these drawings that both my partner and I had done and yeah, they were here each weekend for a month and they struct, they did what we wanted and with the support of the Trust and it was just wonderful, great. So I would say to people, look up, you know if you can't do something yourself, I know there's voluntary, volunteers and Trusts in, in the locality and there might be somebody, I never, I've found it since, I'm sure it happens within our area, there might be a retired gent who would be only too happy to come in and give you a hand and assist in doing it up.

I've got a couple of friends at the moment who are wanting to do their gardens and I'm trying to see if they can sort of, if its something we can set up ourselves, some volunteers can go in and do like a Ground Force thing, it would be great, be really good because people still want to be doing their garden, but they won't be able to manage it at the moment but they can have, we did raised beds, we put those in.

Do it quite simply with some log roll if you can afford it, get some nice brick ones, or sleepers are very good, but you're not going to be able to do it yourself, you need the muscle power to come in. We've reduced the size of the lawn, and through the summer what I do is, instead of mowing the whole lawn, its, we've made a pattern so it's like a spiral effect, it takes you five minutes and it's done, but, so the grass is then going to get the spiral and you've got the daisies and everything else in it and it just looks really nice.

It took years for her to obtain the right benefits and she thinks she should have had more advice.

Benefits, definitely benefits, it is an absolute minefield and it's I think it took me 10 years before I was even put on the right benefits and that's horrendous and you feel so, again it's the word isolated, until somebody who happens to be on it themselves  sort of plucks up the courage, no I wouldn't say courage but plucks up and says, 'Well this is what, aren't you on this?' and 'Aren't you on'', it's all word of mouth, the authorities, doctors don't seem to put you in touch with social workers, OTs [occupational therapists] or whatever and I don't think I had a particularly good experience, some people have had a wonderful experience with OTs and social workers and they've helped the necessary people out enormously and I don't seem to have had that so I wouldn't say it's just my experience has not been particularly great but yeah.  

There are times when you can remain independent, but at other times you need to accept some help.

And another person said to me one time, when I was looking for some sort of help, it isn't that you want somebody to take over your life, but you're quite capable of flying the plane but you just need somebody to assist you, and be the co-pilot now and again that when things get a bit rough they can take over, and I thought that was such a brilliant analogy, and I thought yeah, its you know, when you're capable of running the ship by yourself you go ahead and do it, but sometimes you just want somebody to read you a little bit and sort of say right you've had enough lady, you know I'll carry on for a little while and it's, without it being sort of off, its that sort of, its I wouldn't say it's walking on eggshells but I think it can be, because some people take such offence from it sometimes and say look 'I'm taking over' but I'd say 'No go ahead, [laughs] please, you can make a cup of tea this time'.

She made friends at the support group and felt it was the best thing she did as it helped her accept her RA.

It's, I remember I was just thinking, I got involved with the Arthritis Care fairly early on and, but it wasn't right for me because I was looking for somebody who was like me, I was 21 when I was diagnosed, I wasn't in my 50s, 60s, I was trying to do something with my life, you know, you're still, having relationships, you're wanting to do your career, you're wanting to be this successful career woman and you know you want it all and I couldn't meet any, I hadn't met anybody even within the hospitals where I was going who was like me. So I tried the Arthritis Care but like I say it wasn't, unfortunately they were lovely people but no it wasn't right, I went a few times and I've tried another organisation down in the southwest, but that was the same thing again, it was the elderly ones.

So then, when I came up to Yorkshire, I had been really ill for a while and I thought I've got to try something again come on, I need to get out, I was living in the middle of nowhere and lost contact with everybody I was working with and everything else, so I joined the young side and it was the best thing I did really because it really, they had an understanding of it and introduced me to a group with similar conditions, like everybody with arthritis, there's so many different fractions of it anyway.

They knew that you got tired, knew that you may not be able to go out for a drink in the evening and I think that's when I started to accept what was going on, that it was okay, that it wasn't a failure on my part to have this huge flare up going on and I wasn't able to have my career and everything else, it was just one of those things that, it was just another experience to have to go through in life and there's others that were going through it with you. 

So yeah so I joined them and they were great and ended up after a while meeting a great bunch and moved again to an area where I am now.

So I would say to somebody if their newly diagnosed and they're thinking about joining some sort of group, do it, even though it might not, this, you know, whatever group might not be right, don't put it off, just keep, you'll eventually find something, it might even be a night class, you know it might be something like that you want to get involved with or, or just don't isolate yourself away and hide away, that's a big no, get out, you know, or get somebody. Even if you want somebody to come in and, and be in your own home and, and get to know you or, we have a group and our [name of person] said if the confidence needs to be that you want somebody to come and pick you up to take you to the group because you're frightened to go in that group by yourself, that's the biggest thing is to walk into a completely new group, all by yourself, that's a big thing, so if you need to get to know somebody beforehand, to be able to hold your hand basically to go in, then try and find a way round that and do that, because that's the biggest stepping stone is getting outside your own home and having the courage to make a step towards something new yes.