Interview 26

Age at interview: 46

Age at diagnosis: 38

Brief Outline:

Diagnosed '94 after flu like symptoms & joint problems for 6 weeks. Gold injections 50mg/week, slow release Voltarol 75mg/day, pain killers, Prozac 20mg/day (depression). Steroid injections when required. 3 bone removal operations from toes and ankle.

Background:

Retired (on health grounds) chef. Separated, living on own, 3 children.

It began suddenly with a swollen ankle, pain in his knees and wrists, and aching all over as...

I was diagnosed with RA about eight years ago it first started pretty quickly it, I used to do a lot of running and a lot of cross country running and exercise and it came across so quickly I just woke up one Saturday morning, went out, tried to go out for a run and I felt really, really as if I had flu. I tried to run and my right ankle especially swelled up and it just didn't feel right at all and I had to pack me run in, go home and I felt absolutely washed out, cos I said like, it's like you've got flu you're aching all over, me knees hurt, me wrists hurt and I felt really, really lousy and it just started from then. It went on for about six weeks me joints started swelling up and eventually I just had to go to the GP cos I was a bit confused, I didn't really realise exactly what I had at all.

The symptoms were really getting him down, so he saw a specialist privately.

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.

Uses painkillers together with exercise and distraction to overcome pain. Has come to terms with...

I take Tylex painkillers when I need them as well.

And do you find you have to take many of those?

It varies, it's up to six, six a day sometimes if it's bad, but obviously when you're not working like right, I always tend to, well I've tended to find now I can, I can manage it a lot better I can do things, exercise certain things, I've got exercise sheets where I can try and sort of exercise the pain out of it more than, than take pills and things like that, so I've done that more sort like, like swimming as well like right, which is pretty good a couple of times a week.  

Use me mind a bit more like getting out of it, getting round it that way basically as opposed to just swallowing tablets all the time, but when it does get bad like right, out come the tablets and away they go like and they are pretty good yeah.

And how do you feel about taking them long term?

A lot better now than what I did do, I had a real problem with tablets years ago, I didn't think, you know, like I said like a person who'd never taken in their life, I thought 'God I'm taking all these pills' and what have you and I have a cupboard, well a box full of pills and there was pills for this that and the other and you know it was a bit of an eye opener and it was a bit frightening really. But as of late, sort of the last year I've come to terms with it a lot better, and as the illness has sort of, as I say the last few months sort of died down a bit, I'm taking less tablets so it's working quite well. I don't feel bad about it at all really.

Taking herbal remedies for stomach problems didn't seem to work but he had an MRI scan to assess...

And I tried a couple of herbal things for me stomach at the time to try and settle me stomach down, I had a lot of indigestion with the Voltarol and things like that, but I tried to, the anti-inflammatories and the actual, to help me with my digestion and problems with me stomach, but it didn't seem to work at all. I think, I think changing my diet and eating more healthily has sort of helped me more that way than herbal remedies have.

How long did you try them for?

Oh a few months, quite a few months, but they didn't seem to work at all.

Have you ever had an MRI scan done?

Is that the one where they turn you around on the?

They put you in sort of more like a magnetic tunnel.

Yep I've had that one yeah, yeah I had that cos I had a lot, I had trouble with me stomach and they put in that, that's right yeah I had that one yeah.

And how did you find that?

It was a bit worrying at the time because I did have a lot of trouble with me stomach, a lot of pain and there was bleeding and you think the worst like, you thinking you know it mind sort of, thinks all sorts of stuff and when I went in there were a lot of really ill people in there who were obviously had cancer or whatever like, and it does make you feel you know, it worries you a bit. But they were pretty good there like, I went in and it was all clear so you know what I mean it was just, I think it was just irri, the actual, the bowel was actually irritated and the actual, well all the way down into the bowel was just irritated by the different anti-inflammatories I was taking, and the medication, so they just sort of varied it, the dosage and what have you and it cleared up after a while.

Can ring the Rheumatology clinic and request injections if joints are particularly painful.

I have a Rheumatology card where you can actually ring in if you're having trouble with your RA and there's an injection clinic, where you just can turn up on a Friday, you know they can just book you in there, there's no waiting for it, so you know what I mean, if you have joints which are regularly troublesome you can pop in and they can put a cortisone in or whatever. So they're pretty good.

So do you feel quite involved in the management of your RA?

I do feel yeah now definitely. Yeah, especially with finishing work it's made it a lot better, mana, sort of managing it really. I feel a lot more comfortable with it, before that I couldn't come to terms with it at all really.

Do you like I was going to say, the fact that you can just ring up and sort of take a bit of control yourself?

Yeah it does help you really, especially if you're having trouble with a joint like, as I said me two shoulders, me shoulders were bad and I was having a lot of problems even just cleaning me teeth, brushing me hair, just trying to move me hands round the back there, you had to try and shift them, it was, it's weird like trying to explain to people like right, it's just sort of day to day stuff and you just, the pain is incredible, so to pick a phone up and to just explain to them down the phone and they say 'Right not a problem like right, come in on Friday such a time like right and we'll put some cortisone in them'. Put some cortisone in and two days later you feel super human again like basically. Yes, it's pretty good.

Has insoles made for his shoes and boots which he finds 'pretty good' and can get new ones when...

The ones for your ankles and what have you are good as well, and I've been, I've had me mould, me inner soles done on me shoes and things like to build, to build the arches up, push your arches up to make it a bit more comfortable, so they're pretty good as well like. And you can always renew them, you just have to, you just have to phone them up again right like, and if, if you need anymore you just get it there and then like so it's pretty good.

You don't have to go through your consultant again?

No you can just, you can just actually ring them up and especially for the inner soles for the feet, just get another appointment they measure you, measure it all up again like right, see how if your foot's changed shape or anything like that and then get them remoulded and what have you and they're pretty good.

And you wear those in your own shoes?

That's right yeah, yeah. I did have a bit of a problem with them though because it tended to make it even more painful, but they, they modified them and it's not so bad now, it's pretty good.

Do you have any trouble finding shoes that are comfortable?

I have done in the past because they tend to be, especially me right ankle like tends to push the boot, when you look at me shoes or me boots well the actual right one, all the leather seems to be pushed, it's the way, the way the joint's moved, so it's you know what I mean, it's a bit, it's a bit of a bind sometimes trying to get your shoes to fit you properly, especially when your feet swell up and the way your actual joint's moved and changed shape is a bit of a, bit of a bind at times but generally it's not bad.

He found it hard to come to terms with having a chronic illness.

And it's not been the sort of best, if I say the last two years haven't been the best in my life basically, it seems to have, things have got a lot worse, but I'm a lot better now, I feel a lot better now with actually packing in work and I've actually, it's taken me so long to actually come to terms with having RA, it's only probably the last couple of years, when I've actually been honest enough and come to terms with, that I have had rheumatoid arthritis I have had a and I feel a lot better for it now actually. But before that I just could not come to terms with it I thought you know it's not me this, I, I don't get ill and unfortunately I was and I just didn't, didn't come to terms with it at all.

Did you think it was going to get, you know, did you think you would get back to sort of normal as it were, or you just couldn't accept, it was just sort of denial or?

I think it was denial really, because I'd always been a person who did a lot of running and a lot of exercise, breeze into work like and just blast it you know what I mean, cos being a chef you have to motor and I used to just do it for fun basically, and then all of a sudden like, this thing comes along and like zap! It just knocks you back straight away and it just took me, taken me so long to actually come to terms with having an illness, but now I feel fine about it, and I can cope with it a lot better.