Interview 12

Age at interview: 76

Age at diagnosis: 74

Brief Outline: Diagnosed mid-2000 after rapid onset. Side-effects from sulphasalazine with hydroxychloriquine. Currently Methotrexate, NSAID, Losec, Celeximab and Paracetemol. Some steroid pulses and planned knee replacement.

Background: Chartered mechanical engineer, married with one adult child. Member of several arthritis organisations, an Expert Patient for NRAS and attended 'Challenging Arthritis' workshops.

The symptoms of RA developed quite suddenly, with excruciating pain in his left arm and right hand.

Well from day one, this complaint came with me overnight and the first sign of it I had was a terrific pain in my left arm and it was so excruciating I didn't know how to, where to put it and it eventually subsided a bit and then the next day, it went from my arm, my left arm to my right hand and the pain was absolutely again excruciating.

No way could I get any relief from it at all and upon going to my doctor and explaining this, he was quite confused about it and the only thing that he could recommend at that particular time was to go home and take some paracetamol or analgesic. And this I did and I couldn't wait to get home to take the tablets and it did subside. 

And then as the week went on, it became more general and my joints stiffened up until the point was reached where I was just almost locked up solid and obviously I couldn't do any of my normal washing, dressing functions. And then after about 3 days it seemed to subside, and the period was accompanied by profuse sweating and also sickness which was quite severe.

And then it appeared to, I was getting some relief and for possibly two days, it seemed that it was going to go away although there was residual aches and then it would return with renewed intensity such that it would lock me up again and again I had to rely on the services of, the support services of my wife to get dressed and washed and all other facilities, other act, functions as well which at this, came, went on for a period of five weeks and this on off, on off period. 

Was very ill at first but was comforted by getting information about the disease and knowing new...

Well, at the time I was very ill with it. The thing that really shattered me, oh well shattered me, I've always been one if these fellas who if it's happened, it's happened. I've had accidents in the car, on the road. I've been in hospital for weeks and weeks with accidents. But it's happened and there isn't no turning back, you just, its' the last met, one of my, one of my major accidents I had in 1976, I said, 'it's project get well' that's what you've got to do, it's project get well. You can't put, you can't put the clock back, it's happened and this has happened.

The only thing that really bothered me was the fact that I'd be locked up like this for my life, all my life, and there wouldn't be any relief from it, because it's not a disease that can be cured. It's incurable and so obviously that leaves you to believe that you know, you've got it mate, and this is how you're gonna be.

So that was my first reaction to it, you know, I thought where is the relief coming from, you know, I didn't know, and that's why I've done all I can to since then to get the information 'cos I've always believed that, you know if you can find out the more information I find out, yes it worries you, of course some of it does. But the more information I find out the more comforted I am. And that's why I say about these new drugs, I'm, you know, I'm comforted to think that new things are on the way. But then, my first reaction was, oh, oh dear, my life has come to a, a sudden halt. And it had, it had literally.

'There are many possible causes but if you have it you just have to cope as best as you can.'

But there's a number of ways, you can keep conjecturing about why it came about. You, they're all sort of old wives tales and things like that. Now they do say that it can be caused by a virus. I remember I went to a party, a farewell party, there was a lot of people and after that, that week, the following weekend, I had, I felt ill and then in the following week I had it, it started so I could argue, I caught a virus up there but it all in the wind isn't now, it all history. 

But it all happens for various sorts of reasons doesn't it. People, as I say, some people get it gradually. Other people it's a sharp sort of shock effect. So what can you say? It can be your diet. It can be you, it can be in your genes. I don't think it's inherit, it's hereditary. You can't inherit it I don't think the general pundits say, you know. But it's happened and that's all you can do. You can contend, you've got to contend with it as best you can, with the aids that are available.

Continues to do the physiotherapist's exercises and finds playing the organ also helps keep his...

I had physiotherapy and that was, that was extremely useful and I still carry out the exercises, not all of them but I do whenever I'm doing some activity I try to, you know, my hands for instance, I keep my hands, I 'cos I play the, the organ you know, and the piano, and this was another thing that really started to get to me, the fact that I probably never be able to use my hands again. I still can't do what I used to do with them.

They get into, the fingers get in the way and so I do my stretching exercises with my hands and that's been, I think it's kept them up to a point flexible and I can still knock out a, I still knock out a tune, you know and get the company, get the assembled company going, you know, with 'Down at the Old Bull and Bush' you know, type of thing. Ha [laughs and coughs] because I only play by ear but yep, it's a nice pastime and a good mental relaxation  too. So I keep that going as much as I can.

When he first got ill it took him four minutes to get off the toilet seat.

But you got to keep doing a bit of it, whenever. Whenever I've go up, I use the old stairs and get my legs going, you know. One time when I first started this, you know, I was so weak I had to throw myself out of the chairs to get out of here, just to lift myself up was absolutely, well almost well it wasn't impossible eventually I made it. Even to get off the toilet, it took me four minutes, something, on average four minutes to get up off the toilet seat.

I had to get my walking stick and hold, and get it around the handle of the door to pull myself off the' and so it went on. To get out of the car, my wife had to get the walking stick and pull me out of the car [laugh]. It really hurts to think that you can come from that to this but then that's, that's the complaint, you know. So after going, going through those early phases of the disease when it hits you so violently, some people of course, it, it doesn't it just builds up gradually.  

The six week Arthritis Care course called Challenging Arthritis did him 'the world of good'.

I, I'm, I've but it's good to know the amount of support that is out there. I, I went along to Arthritic Care, Arthritic research I think' it's Arthritic Care. There's ARC and there's Arthritic Care and whether its ARC' 

Anyway, they run a 6 weeks course and  they give these course locally, all over the country. They started about 2 years ago and when I went along to the first session I was in a very, very, depleted state. And after the course is run by people who are fellow sufferers and I must say that  whilst the course doesn't aim to  talk about medication that's, it's not, they talk about the peripheries of the disease and the effects I've been describing such as the psychological effects and the like.

It's a course where people can express their, as I'm expressing now, their views about the whole complaint, how it affects them in and I found that course over six weeks to be extremely beneficial and I'd recommend that to anyone who is suffering to go along there because it's like it's like going to a session of Alcoholics Anonymous you know and they, you can, you know talk all your thoughts out and they, structure it extremely well I think and it did me the world of good.

At the end of six weeks, whether it be that or whether it be for other reasons, I, but I, felt much, much better, knowing just that you've talked to other people who are suffering in similar fashions and they all have, or the majority of them, have exactly the same feelings about your, the complaint as you have, which is  which is something in a sense to know. The inertia that you have overcome to do something, you know, just to make lay down objectives each day, just to walk around the block and you know make up your mind that you're going to do it, is, is something and to do it is quite another thing, when you can't move. 

He sets himself goals each day because he doesn't want to become a 'lifeless lump'.

Apart from the, the joints thing, its this inertia to overcome to make sure you, you set a programme record because that's what this course I went on was all about was setting a daily programme. In fact we used to set them out and you say now what are you gonna set out to do this week and you say, some people would say, well I'm gonna walk around the block each day.

And I would say 'Well I'm gonna put a block in the middle of the con, in the patio, a concrete block and walk round that' and it seemed silly things or I'd say, 'I'm going to offer to pour the sherry today' and well it's just nonsense. But, no, but the thing is that they, they, the thing is to set, encouraging you to set tasks to do, so that it becomes more commonplace that you would do these things. 

Otherwise you just sit and rot and gravitate to a situation where you, you become a life, lifeless lump. Again it's not something that I don't think the medics are always totally appreciative of, not all of them obviously. But I think it's a message that err, well perhaps that's why all the other good things are there, the other, like the courses are there for this very reason. That's why I emphasise from my own experience for people who've got, to take part in all these things to try and go out and there and seek this sort of help. As I say it's good to talk to people, in a group, it's group therapy really that's what it is and you need that, otherwise you just become a cabbage. 

Being in pain and generally feeling unwell with the RA made him feel depressed but taking a short...

And he, he's been good even since and I talked about depression. There was one occasion when I was so, in so much pain, I, my wife came home and I was crying on, over the, I'd been doing the washing-up and you know you have to, I'm left-handed, you have to hold a plate, this arm's absolutely giving me excruciating pain and I was really, I was really at a low and I just burst out crying. She, she called the GP and he was good enough to put in an appearance about an hour later and he gave me some panadol, one of the uplifting drugs, you know.  

And I took those for, one every other day for about a week and that did the trick, you know it got me up a bit. And all I was looking for then as I kept telling people, was 'cos I was on this sulfasalazine and the hydroxychloroquine, and then all I kept telling people, all I wanted a lift from this awful feeling, total body feeling, quite apart from the aches, which were one, which were a major thing, it was all the other attendant feeling in the body and mind and all I wanted was a little lift and once I got that I was starting to get away, you know, and these tablets you know which  well I suppose, it's, I, they're like drugs, what's the name for them, it begins with, begins with a P, you would, you must know them but I don't, my wife would know them immediately.  

But anyway they're, as opposed to the downers they're the uppers and you know, they, they were very beneficial, taken at that point. I wouldn't want to keep on with those because they are, they probably could be addictive, I don't know.  

But I elect to stay off those things as much as I possibly can and, but they did the trick for the time so I suggest to anyone that gets into that parlous state that those drugs, anything like that can be, if it's taken in moderation in the right way, can be very beneficial to your situation, at least I found it so anyway.