Well you know I think by the time I’d gone back to him, I’d com, I had real, you know, I think it, it was a weeks, a matter of weeks, and I had really gone downhill. Then he, he you know, he did say, ‘Well I think it is and I’m gonna to, I going to refer you straight to the, the hospital, you know, the local hospital that does it. And you can, you know well get you in there, you know, urgent referral. And that’s a bit, ‘oooh’ You know, but by that stage I just want to know what it was, you know. Everything goes through your mind is it, is it you know. I don’t think it was cancer. I didn’t, no I didn’t, yeah I didn’t think it was life threatening. I just wanted to know what it was. And I couldn’t imagine you know, me having you know rheumatoid arthritis. But I have [laughs].

I, you know, and I went to see Dr [X] and hes my god [laughs]. Hes, he was brilliant. He, you know, I’d like I said, I was at my last, I thought this is it, my lifes over. And I went to see him and he, he explained everything. He, you know, everything, everything, everything you might not understand, everything, he said, but just you know, if you want to know anything, they give you loads of information.

But I think, I don’t think you; you just don’t take it in. You’re so relieved that’s it’s not you, you know, you, you’re relieved that they’ve diagnosed something, it’s not in the head kind of thing. You know, you’re not, you’re not, you’re not going loopy, there is something wrong with you. Well, he just you know told me what could hap, you know, not what could happen in, in a couple of years time. He just told me that, what’s was gonna happen to me then, you know. And after being prodded and you know, various blood tests, you know, it came down to, I did have rheumatoid arthritis, so.

So I went to the GP and straight away they diagnosed that it was arthritis they didn’t actually diagnose it as RA at first.

They put me on some anti-inflamatories, got in touch with the specialist at the local hospital, but there was a waiting list for six months, so I waited about a month and my symptoms got really, really bad and I was a bit confused of what was going on really, cos I’d always been a fit and healthy person and I was just like, I just felt absolutely washed out, tiredness, the pain, the inflammation and these, and these flu like symptoms were just really getting me down and I was spending a lot of time off work, and me job, I was struggling with me job, so I decided to go privately.

Went to see a specialist at the, at a local private hospital and I got seen straight away and he did some tests, did some blood tests, diagnosed straight away with rheumatoid arthritis and it just happened that the actual specialist I saw was the specialist that I would have been seeing at the local hospital, so it sort of, I jumped the queue basically and went and he got me in a couple of weeks afterwards at his surgery and I started on the treatment straight away from then.

At first they did the x-rays and the joints were normal, there was no joint damage and that was fine, they put me on a course of RA drugs, Sulfasalazine, anti-inflamatories and painkillers.

I had this ongoing scenario with no diagnosis and after 6 months I started to get pain in my bones. I also had muscle fatigue and my GP sent me to the local general hospital and they couldn’t work out what it was. I was under the care of the local rheumatologist and this is going back to the late 70s.

And the, I went back and I was under the care of this rheumatologist for a period of about 9 years, up until his retirement in ’85, ’86. And the level of treatment, though I still hadn’t had a definite diagnosis all this time from the late 70s because I wasn’t falling into any of the general patterns. It was only when the actual joint deterioration and there was actual evidence on the slides that it became apparent what way we were going and I was not able to go back to do the sports although I tried on a few occasions.

But going back, I mean, from the point of arthritis and that I started to learn everything there was about it and I realised that even under rheumatoid arthritis there was certain, no, nobody was going to be the same, everybody’s different. And I sort of fell under the, what is regarded as sero-negative because I didn’t have the, the proteins in the blood that would show up to give a clear diagnostic process.

Well after that initial appointment with my GP regarding the stiff neck he then, when the x-rays came back he then said, ‘It’s not just a stiff neck, it looks like the early stages of arthritis. So that’s when he wrote to the specialist hospital and I then had my first appointment. So that’s when it was diagnosed, you know, as RA more than a stiff neck.

And how did you feel about being sent for an x-ray?

I think I wanted to know what was wrong because I knew by then that it wasn’t, a stiff neck as I indicated at the beginning of the interview. So, yes I wanted to know what was wrong, because, you know as I said earlier, you know, I’ve always been a fit person and to have a this long, long period of a stiff neck wasn’t, wasn’t normal.

So at this stage I obviously didn’t know what the hell was happening to me. So the GP very quickly put me on quite a high dosage of steroids, which stopped the pain, and a lot of painkillers and sleeping tablets and things like that and got me an appointment as soon as possible at Rheumatology, at the Rheumatology department of the main hospital where I live.
They did various tests and blood tests and examined my joints and x-rayed my left ankle, which was where the main problem seemed to be and after about an hour or so I was taken into a room and the consultant told me that I’d got rheumatoid arthritis. He said my rheumatoid factor, which is something they measure, was off the scale, it was 20,000 and something, they’d never seen one so high and all this, it meant nothing to me, I hadn’t got a clue, I thought arthritis was something grannies got when they were in their eighties.

He explained to me that women get it three times more than men, or were more likely to, and it can start in babies as juvenile rheumatoid arthritis anything from the age of nine months onwards, and it’s not uncommon for men to get it between forty and fifty.

During the second flare up after I’d had the break for 11 years, again there was slight confusion over the diagnosis at that stage because I’d had various blood tests and, and to me, I, you know, it just seemed exactly the same as I’d have before. I knew at that stage it was rheumatoid arthritis but I had a phone call one morning from a doctor from my surgery saying ‘You’ve actually got lupus’ and it, I mean, it has a longer name than that but it’s commonly known as lupus. She said ‘the blood test results show you have Lupus. And again I was quite shocked at that because I didn’t know what lupus was;

And so I said to her ‘Well, what’s the outcome?’ or something, I said something like that and she said ‘Do you mean the survival rate?’ And I, and suddenly I thought ‘Gosh! I didn’t know we were talking about a condition that, you know, is potentially fatal. And she said ‘Oh no it very good, you know, it’s very rare for anybody to have major problems with it. And she, you know, she tried to be reassuring.

She said ‘Oh most people, you know, don’t have it in a severe form’ and you know we had a conversation about that and I thought ‘Oh well at least it’s been diagnosed. And then, but it preyed on my mind that, you know, it could be, become a much more serious condition and, you know, we went to see her and talk it through and I thought, you know, ‘This is a completely new thing that I’ve not faced before;

But then in the end it was decided that when I saw the consultant. He said ‘No I don’t think it is that, there is an overlap, some of the symptoms can be very similar but you don’t have enough of the symptoms for it to be that. And you know, he felt sure that it was just rheumatoid arthritis but, you know, at the time that just seemed another sort of upheaval;

And quite a shock over the phone to be told?

Yes it was, yes. Absolutely, yes, something I’d never heard of that could even be worse than, you know, the condition I, in a way, I think when I saw the consultant I almost felt relieved that it was only rheumatoid arthritis, bad as it was. You know, I felt ‘Well this is something I’ve dealt with before and got through. So, you know, it was in a really bad stage at that stage, but I thought, you know, it will settle down again and go away. So, you know, it was almost a relief at that stage to think it was rheumatoid arthritis and not this other condition.

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.

So he then said, ‘I think I’ll send you to a, a rheumatologist. So I saw the lovely consultant at the local hospital and felt a complete fraud because you can’t see anything. So I thought ‘Well what am I doing here, I can’t show him a cut finger’ and I was there for about two hours and I said, ‘I just feel a complete fraud here;

So he said, ‘My dear, you are not a fraud and I want you in hospital within a week. The nurses went on strike that particular year so it was actually 12 weeks before I got in to the local hospital and I was there for about 3 weeks, and complete bed rest. I wasn’t allowed to do anything for myself. I did insist on going to the toilet [laugh] ‘cos I thought I’m not using those horrible bedpans. So they allowed me, I think it was a maximum of three visits to the bathroom a day, but I couldn’t do anything else for myself at all;

Yes I was, yes and it took quite a long time to actually ask what it was that was wrong as I know that the specialist said, ‘Oh I wondered when you’d get round to asking me exactly what it was you’d got. You know, I just sort of sat there and I think it was in hospital that I finally asked him, ‘Well, what is it then, that’s wrong?;

So not at your first consultation?

No, no, I guess I just tried to ignore it. Again you couldn’t see it, so therefore as far as I was concerned, there wasn’t really anything wrong, just a few aches and pains and the fact that I couldn’t pick a cup of tea up anymore.