Interview 24

Age at interview: 52

Age at diagnosis: 47

Brief Outline:

Diagnosed April 1997 after sudden onset of symptoms and admission to hospital. RA widespread leading to initial depression. Side-effects from Methotrexate so now taking Leflunomide 20mg/day, Rofecoxib 12.5mg/ alternate days and pain killers as required.

Background:

No details given.

Was taken to hospital by ambulance and after 5 days of tests was found to have RA.

Well it went back to six years ago an ordinary night I went to bed about 10.30 and about 2.30 in the morning I woke up and felt that I couldn't move, because I was in so much pain. I managed to get myself out of bed and ring for a friend, she came round and she called an ambulance for me. Got me to the local hospital and they admitted me, they didn't know what was wrong with me they were quite worried about it because they thought I had a stroke at first but that came back negative but they kept me in there for five days, did various tests and it came back as, not rheumatoid arthritis, but a different form of arthritis, which was a shock to me.  

But I came, after being in hospital for a about a week, I came home, and I just carried on as normal, and I realised that I wasn't normal, my body wasn't normal and I first realised it when I tried to open a can and I couldn't move me wrist and I knew that something wasn't right then. So then I got back in touch with the hospital, asked to see the specialist and, he did various tests while I was in hospital but he also did more when I went back to see him. And he said that I had rheumatoid arthritis and when I was admitted the previous fortnight it had gone septic and had gone right through my body.

Likes to find out information herself about new treatments suggested by the doctor.

The doctor that I have now, I have such a good relationship with him is that he knows that I'm going to look it up anyway, he knows that no matter what he gives me, I'll come home here, get me drugs book out and I'll read about it. Or I'll get them and I'll read the leaflet, and I'll go back to him and say look I am not happy with that, that and that he knows I won't just say 'Okay' and put the tablets in me mouth and think 'Oh yeah, okay he's said it's okay so' he knows I won't do that. So that is the relationship he knows that I'll, so perhaps he's never tried to explain things to me, because he knows that I'm only going to walk away from him and look it up myself, and get all the information I can on it.

She counts a week's supply of tablets into a medicine cup to help her remember whether or not she has taken her medication.

The painkillers I would say, I took painkillers yesterday, the anti-inflammatory I take every other day, not every day. And the other one I take each night every night I take them, the lefludomide I take every night, so.

Do you, the fact that you're supposed to take them regularly , is there anything that you do to sort of remind you to take them or do you forget to take them?

Oh yeah I forget, I've forgotten before today so now what I do now is I count, I put them out on a Sunday and I have them in a little plastic medicine cup and I put seven in and I know that on Tuesday you know there should be five there, and if there's six I haven't took one last night, that's how I do it now. But I have forgotten, oh yeah, I've took them twice before today, but they said in the leaflet that that's not a problem to do that you know, so yeah I do have them separately in my little cup.
 

Does gentle exercises in a session specifically for people with disabilities.

Yes it's a heated hydro pool that they have at the hospital. But I've since found a disabled pool which is good for me because as I've said I don't go down, but this is a slope which is quite good, so that enables me to sort of get into the water without much sort of problem, other than most pools you go down steps don't you to get into the water, well this has a, has a sort of gangway that you can walk you know which is good.

And how often do you go there?

Well I try to go at least once a fortnight, but because of the winter months, I've only just now, I went three weeks ago and I haven't been back since, but I'm hoping to go again, you know, but I've got to find out, they were changing the times that was why I haven't been, they're changing all the times of it and I'm hoping that they're going to have one in the morning times so that it's no, when I feel worse is in the morning and it would be great to just go and get in the baths and you know be able to sort of do something like that, plus it's good for me you know, it can't be bad for me, 'cos what other exercise can I do? None, which is not good for my blood pressure I would think you know.

And what do you do when you get there?

Although I don't swim what I tend to do is I tend to stand at the side and I move every part of me, it might only be for a few seconds, but I move it and I kneel down, just to see if I can, and I do but I could never do that, I can't do that any other time, you know I just cannot do it, I cannot do it, but I can do it in water, makes no sense to me, but... 

And did they teach you any specific exercises when you went, at the hospital in the hydro pool?

No, no, no they just said to move, to move slowly the limbs that you can move you know, because they have somebody with you so they go through it with you and you, it's a very, very gentle exercise, very gentle you know. But I've found the one, the other baths that I do go to easier and better than this one in the hospital you know because obviously it's only small in the hospital and this one's a bit bigger a bit more space in it, for me anyway.

She worried about going on holiday for more than a week because she wanted to stay close to her doctors.

Oh I had my first holiday last year. I went, only because I was a bit worried about, well I only do two and a half hours, there's only a two and half hour flight so that enabled me to not be sitting for so long but I did move around on the plane and but that did me really good because of the sunshine. But that was the first year from five years ago that I'd had a holiday because I didn't feel confident enough to go away. I was a bit worried about being away from home and the sort of the safeness of knowing that you're specialist is there or your doctor's there and you know if you go away you lose that, you lose that. But hopefully I hope to go away this year as well for a week. But I don't do longer than a week because I don't want to be too far away.

She thinks that she couldn't have a sexual relationship and thinks that RA 'killed' that part of her.

Because it has I don't think I could actually have, I couldn't have a sexual relationship now, I know I couldn't, I just know I couldn't. I think it's killed that part of me I don't know why I just, I just don't know, I've never questioned myself about it, at the moment I haven't anyway, because I really haven't had the need to you know so I don't sort of think about it that much. 

No, no I couldn't even think about it at the moment and perhaps I should but I don't think about it at all, at all. Maybe I'm being a bit selfish and self absorbed about it but no I don't know whether it's, I don't know whether I lost all that when I got this I don't know, I've never thought about it I've never ever thought about it, it's something that does not even come into my life, at all, strange as that may seem,  no, you've probably just reminded me of something [laughs] something that I don't think about, really don't.

Has it affected sort of relationships with friends or?

No, no at first it did, because it was very strange for them you see. Because as I said to you I was very independent and a very strong person and it made me very weak  but  they say to me and I know they say it to me all the time how brave I am and how sort of, how do you cope with this you know,  we just don't know how you do, but you do you do it very well. I mean I, I am sometimes in so much pain and I won't speak about it. I won't say you know I'm in pain I just think 'oh you know I'll just see how far I can go' you know or you know I'll go and lie down or something. But I would never say you know, I'd not, not very often I say.
 

Her specialist advised her to come down stairs sideways.

But even the menial things you know even like the stairs, stairs are a nightmare to me, not going up them, coming down them because I got no, how did my specialist put it to me one day when I tried to explain, and he said 'Think of a car and think of that car with the shock absorbers in it, and when the shock absorbers go in the car it doesn't bounce, that's your feet' he said 'that's your feet' he said 'so whereas you can go up, you can't come down'. 

He said 'So always think that way' he said 'and if you're going to come down stairs, come down on your side, walk on your side to come down step by step by step' but that's difficult when you're in shops or you're somewhere because you know, you get these people looking at you and think you know, 'She's not old, what's she doing? What's she walking like that for? She's not an old person, only old people do that'. Or you get an old person coming up on the same side as you and you just, you know who moves first? I can't move because I'm scared if I leave go of this of falling. 

You know, so it's little things like that, you that sort of I don't, I don't know whether they annoy me or they, they just, I'm aware of them, so I tend not to do stairs. If I see somewhere that I have to go up or down, if I go, if I go anywhere the first thing I look for is a lift, or an escalator, but the escalator has got to come down, it's not going up, it's got to come down, you know,  it's, it's so many, so many things that change you know I could probably go on for hours, but everythings scrambled in my head. 

Felt very depressed with the disability of RA and considered suicide. Her doctors helped by giving her sleeping tablets and information about RA treatment.

And that was the way I was. And then I come back here to home and I just sit and I'd cry. So then the depression set in. So I was coping with the arthritis and trying to cope with this depression at the same time. And I wasn't sort of getting anywhere and I, at, at one stage it was so bad I thought, 'Well if this is what's going to happen to me, and if nothing else is going to happen to me, what's the use of going on?'. I did seriously think about ending it all at one stage, that's how depressed it got me.

It sort of all hit home to me then, you know that I did have this and I was terribly worried about it. I really let it get hold of me actually you know it took a big hold of me you know it did it sort of it was trying to swallow me up and I thought 'Oh God, if I don't do something, I'm just going to die'. And I knew I was going to die, I knew, if I didn't die I do it myself, I was that determined, I thought 'No this is not for me, this is not, this is not the life I want for me', you know and for others around me. That's what I kept thinking, I kept thinking God you know, I'm putting a burden on people I'm not going to be a burden to anybody you know and then gradually as I got on I sort of come to terms with it more.

And were you treated at all for your depression?

Yeah yeah I was I was treated for me depression with sleeping tablets mostly. My doctor was very good though at that time.  She even actually got a lady doctor that used to work at the surgery and she knew a bit about Rheumatology and she knew how I was and she'd arranged for this lady to come and see me, and she, you know she looked at me and she said 'Oh you really need to go on second line drugs', and we went through it with her, and she went through everything with me. And she said to me 'You will, you won't, you won't feel better next week', she said 'it takes twelve weeks, twelve weeks' she said at least to feel any relief from this certain drug that they were putting me on.