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.
More about me...
Was taken to hospital by ambulance and after 5 days of tests was found to have RA.
Was taken to hospital by ambulance and after 5 days of tests was found to have RA.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
Does gentle exercises in a session specifically for people with disabilities.
Does gentle exercises in a session specifically for people with disabilities.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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...
She worried about going on holiday for more than a week because she wanted to stay close to her...
SHOW TEXT VERSION
PRINT TRANSCRIPT
She thinks that she couldn't have a sexual relationship and thinks that RA 'killed' that part of...
She thinks that she couldn't have a sexual relationship and thinks that RA 'killed' that part of...
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
Her specialist advised her to come down stairs sideways.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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...
Felt very depressed with the disability of RA and considered suicide. Her doctors helped by...
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.