Interview 30

Age at interview: 55

Age at diagnosis: 47

Brief Outline:

Diagnosed '95 after severe ankle pain (maybe virus triggered). Subject in Anti-TNF trial. Pneumonia due to RA. Regular steroid injections prior to ankle fusion. Methotrexate/folic acid, Celebrex, Tramadol, Diazapan, Tomazapan, Prozac, Atenolol, Dothiepin.

Background:

Senior manager in bank working full time shifts. Married with 2 adult children.

He developed severe symptoms quite suddenly, with excruciating pain in one ankle.

If we go back to about 1996, I was then forty seven, I was at work, on nights and I had been playing squash, we have a squash court at work, a couple of nights before and I'd limped off the squash court and I thought I'd just pulled a muscle in my leg, but my left leg felt very strange, and as I say a couple of nights later, about six o'clock in the morning, I got this tremendous pain in my left ankle, I can only describe it as like, someone had sawn off my foot and I was treading on broken glass, and I could hardly barely move.

Now unfortunately at that time we were in a transition period of jobs, my job title went from Service Availability Manager to Shift Manager, and they'd asked me to look after the night shifts for about three months, so I'd been on nights for about three months, and there was only one other manager on duty at that time of night, and I was just about to say to him, 'I'm going to have go home, I feel terrible', when he came up to me and said 'I'm going to have to go home I feel really dreadful', [chuckles] so I couldn't leave the place with no managers there, so let him go, and I struggled on until the end of the shift.

When I finally got myself upstairs, I sat on the end of the bed and the pain was that bad that the tears were streaming down my face, I was so tired, I couldn't sleep the pain wouldn't let me sleep my wife was doing a course at the time and I sat there really until about half past twelve when she came back and she found me crawling along the landing trying to get to the toilet. And she took one look at me and called the GP. I tried to get some sleep but I couldn't and eventually the GP came round about quarter to five and I don't know what they injected me with, they gave me something to knock me out basically and quite a large dose of steroids as well and that was the beginning.

Tells what happened when he first saw the rheumatologist.

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.

He had been shocked at the impact of RA on different aspects of his life.

So the biggest, the biggest shock to me really has been 1) I didn't know what to expect when I got it, 2) I didn't have a clue what it was and 3) I certainly didn't realise the impact it would have on my daily life and my work life and my marital life.

Well as I said before I didn't know what he meant, my wife certainly did. I thought arthritis was something you got from wear and tear and that came on with old age, still playing and squash and football, I thought I was reasonably fit and he tried to explain to me that this was different it was an auto immune disease and basically what was happening was that my T cells were actually attacking perfectly healthy joints, for no reason whatsoever, or not one they've found yet, and basically eating up my cartilage from around the joints, and that was then causing the pain. So I would have to be on medication for the rest of my life and the only thing they could do for me was to try and dampen down the effect of these T cells combined with pain killers to stop the pain.

And when you were first told that I mean, how long did it sort of take you to sort of really realise that it wasn't going to go away sort of thing?

After I spoke to my wife, I mean I told her and she looked at me in disbelief really. Because she'd always thought I'd drop down dead of smoking one day, and not get something long term like this.

So she explained it to me better than anybody else had really. But I must admit, I'm not sure even now that it's sunk in, that I've got this thing for life. 

A tip about eating before taking methotrexate helped him overcome the side effect of nausea.

Methotrexate is disgusting stuff and to start with I couldn't, I couldn't actually take it, I'd sick it back up again. So and that was when I was on quite a low dose, because they started me on 7.5mgs and worked my way up to 25mgs per week.  

So at one stage because of the, because I couldn't take the methotrexate they were talking about injecting it intra-muscular and they said you know they could show me how to do this myself a bit like somebody with diabetes. Trying to get the mechanics of that actually going through the old hospital was a nightmare. They wouldn't play ball basically and it would have meant a midwife having to come out from [name of another town] over to [name of local town] to administer the methotrexate and all sorts of stuff like that.

And then one day at the clinic, when I was waiting to see the consultant, there was a little old lady next to me, who was on methotrexate and I was telling her the problems I was having and she said, what you need to do is she said is have a massive fry up, you need to have bacon, eggs, sausage, fried bread the whole works she said, eat that and then take your methotrexate. So I did, and it stayed down. Now whether that works for anybody else I don't know, but it certainly keeps the methotrexate down and eventually I was able to take the 25mgs a week orally and without the big fry up and, because I put two and half stone on because of the stopping smoking, so I thought I can't keep this up [laughter]. But that's initially how I managed to start taking the methotrexate and making it stay down. 

Describes a toe and ankle fusion operation and how the pain is now more like mild toothache than...

So eventually what was recommended about two years ago, perhaps less than that, a year ago, was that I actually had my left ankle fused and I was able to have this done privately because I, get that as a perk through work, and had that done in September last year, September 2002, and I was in basically just in for a couple of days, to have that done, it was done under general anaesthetic and they also took the opportunity to straighten out a toe that had really, turned into a hammer toe in fact it was totally bent, so they put a steel pin down through that at the same time, and then I was encased in plaster and I was in plaster for five months.

I went back to work after five weeks after the operation, and work actually got me one of these mobility scooters to ride around the data centre on.

So they went for fusion, so I looked that up and I knew everything they were going to do before I had the operation. I mean I'd actually seen pictures and x-rays of people who'd had, had it done, so I knew exactly what was going to happen. I didn't know how I was going to be able to walk when I'd finished with it you know, but it's been a great success really, he's done it really well.

And I realise you're just like out of your rehab, you're still getting, but is it easier to walk on, is it less painful, is it less stiff, is it?

Yes all of those. Yep, it's. It's, it's like having mild toothache all the time in your ankle at the moment, whereas before it was like a raging fever in there you know, almost unbearable pain so it hasn't taken the pain away altogether, I can't I have to be careful that I don't bend it in a funny direction or something like that because that then really hurts. 

So so long as I take it easy and put my shoes on and don't walk too far it's been a big improvement yeah. I stopped having to use a stick about two weeks ago. It suddenly kicked in after the operation, because when I first had the plaster off I didn't feel there was any difference. It still hurt like hell and I couldn't walk, you know, but suddenly it suddenly clicked in and it seems loads better.

He tried 'everything that the homeopathic, herbalist, and internet has got to offer', but decided...

In terms of what else has happened along the way, like many other rheumatoid arthritis sufferers, I've tried probably everything that the homeopathic, herbalist, internet has got to offer in terms of cures or so-called cures for, for the illness and I haven't found the Holy Grail yet so I would, if anything I would tell new people coming in with rheumatoid arthritis, just don't bother, don't waste your money, you won't find it. There are certain things that can, rheumatoid arthritis has other effects on, you can get nodules in your lungs and it can affect your stomach, as well and some of those herbal remedies did actually calm my stomach down and things like that, but there was no way anywhere I could have stopped taking medicinal painkillers or, or things like methotrexate, which I'm on now.

Rheumatoid arthritis affected his marriage because he had to spend so much time resting.

It's had an affect on my marriage in that in the early part of it, my wife had to do a lot of looking after of me and during the operation I had a lot of rec, five weeks of recuperation at home where I couldn't even get out of bed and obviously affected my sex life as well in terms of most nights I need to go to bed at nine o'clock and most people don't go to bed at nine every night you know, I just have to, especially when I'm on day shifts, all I can do is go to bed, get up and go to work, come back again and go to bed, so the only real life I have is when I'm on my days off from work, when I'm free to, to do the sort of things that I'm interested in.

His company got him a motorised scooter to help him get around the workplace more easily.

When you'd had the ankle done you said they got you a little scooter, [Yes], did you have to ask for that or did you know, I mean how did you go about getting that?

The first seven weeks one of the girls on my shift had got an, an old wheelchair at home, that I think it belongs to [name] Hospital and had never been returned and it was her grannies, so she brought that in for me, so I was going around in that for about seven weeks and they did nothing, and then all of a sudden out of the blue, they came up to me and said you know we should get you one of these motorised scooters like Ozzie Osbourne was going around on when he broke his foot, and I said 'oh great' you know, and it arrived the following week.

I don't think there was anything altruistic in it at all, because I looked up again on the internet and found that employers, you can actually claim that as a taxable thing against, against your company so it didn't actually cost them anything and I think they just got a bit, they didn't like the image of this guy in this battered old wheelchair roaming around their brand new data centre, which is state of the art you know, so I don't think there was anything caring or sharing about the fact that got it, it was just that I was a bit of an inconvenience and I looked better on this other thing, so that's how I got it I think. But I didn't ask for it no.

He is sure there is discrimination in his place of work.

I got a very bad grade at work this year, which has affected me, it's an 'improvement required' grade and at my grade that's quite serious, and I've certainly felt that work itself has never recognised rheumatoid arthritis as an illness or a disease or anything that could possibly interfere with my day to day life. I in fact brought a number of booklets in for my boss to read and he tossed them in the waste paper basket and said what do I need to look at these for?

So that was the level of interest that I got from work, and it's quite a large corporation indeed. The last couple of years they've gone, become a bit more sympathetic because I think they've come to terms with the Disability Discrimination Act and certainly I do feel that I've been discriminated against because of my disability. I can't play in the same ball park as the rest of my peers, and I feel that he should make some allowance for that when doing my end of year review.

Having said that, it's done and dusted and I'll just put it behind me and see what happens this year. I certainly have kept all of the e-mails and notes and things like this which I felt were discriminatory and they're all filed away with the Union that I belong to if ever they do try and decide to dismiss me because, because of this situation. They certainly couldn't dismiss me because of the rheumatoid arthritis, but they might say that I'm no longer capable of doing the job and there is an option to retire early on ill health, I'm fifty four at the moment and the retirement age is sixty where I work. 

He tried many food supplements and says he wasted money, but thinks that cod liver oil,...

I've also searched the internet and the web, finding out details about it and I also understand it's a big spin off money maker for a lot of people in selling vitamins and supposed cures, like shark cartilage and oysters from, from New Zealand and green lipped muscles and things like that, which are a tidy price and if people are trying them out of desperation they can set you back quite a lot of money, and I've worked my through all those, so initially I was in a phase of, if you like, denial. I was searching for a cure to this problem and, and felt there must be one somewhere, even though they'd told me that I've got to live with this for the rest of my life and it would progressively get worse.

Probably the biggest cost has been me trying out every single herbal medication you can find on the internet that's got anything remotely to do with rheumatoid arthritis. And they're not cheap, and I bet you I've spent a few hundred or thousand pounds on those over the years, to no avail.

I take the ones, what I do take is I'm pretty convinced that things like cod liver oil are actually good, I mean one of the diets for rheumatoid arthritis and I've never tried a proper diet regime either, that's one of my, it'd be difficult for me that, but it seems to be that those, that type of cod liver oil or oily fish like mackerel and things, seem, the doctors seem to think that does something and as does the gluco, glucosamine, crondite I think, I don't know how you pronounce it, chrondroitin I think isn't it, that seems to have some benefit as well. So I've dropped it down now to just basically those, I've gone through all the others and they're no good, so there's none left to try [laughs].

Describes feeling unwell, general tiredness and a resulting lack of motivation. He wished he had...

Yes I wished I'd have known about the systemic side of the illness, which I've touched on briefly before, this flu like symptoms that you have all the time, none of the tablets I've ever taken have got rid of that, and you get worn out so quickly and it's not to do with walking too much or putting pressure on a joint that you should, shouldn't be. 

It's a general feeling of un-wellness, it's like, it's like that feeling you get just before you're about to break out in full blown flu, it's a general malaise, there's a general, you can't get up and, there's no get up and go, there's, you're depressed, you feel slightly sick, and it's difficult to put in, into words, but it's there all the time. 

And then on top of that you then put the pain of the rheumatoid arthritis which can go up and down or go altogether as with an operation or a remission but you're still left with this background, like background noise of sort of flu like symptoms which make you feel generally unwell all, all the time, and you have to learn to live with that. 

And I wish somebody had told me at the beginning, because I spent a long time thinking that was depression or something else, or because they were knocking down my immune system with methotrexate that I was now catching colds more easily or getting, actually got the flu or something like that, and I eventually found out when I pointed it out to my consultant one, one time, that in fact this was a known feature of rheumatoid arthritis and was generally well known.

Somedays I lay in bed till twelve o'clock, get up and get dressed and then I'll go and lie back on the bed again until she comes in. So on some days I don't actually do anything with my spare time, it's all I can do to just lie there really. I spend a lot of time on my computer, I spend a lot of time still with my guitars and play, I can still play those fine I haven't got arthritis in the fingers at all, which is great, but I must admit there are a lot of days where I just don't feel like doing anything whatsoever. Now whether this is like just recharging my batteries to get back ready for work again, that's how it feels to me, it feels like I'm working I'm getting totally knackered, I'm coming home and having three days off, recharging and going back to work again.

Used the internet to find out what was going to happen before fusion surgery, and also buys...

I'll go to my GP armed with printouts from the net and my consultant and say 'Look what about this? You know is this worth trying?', and I think they get a bit fed up of me bringing all this stuff in, and me turning into the consultant and they being the patient, but they humour me [laughs].

I looked up all the procedure on the internet and I had a look for joint replacements as well, because I wondered why they hadn't offered me a joint replacement, which is what they can do for ankles and shoulders and hips and things like that. And found out it, that your ankle and foot have so many, I think it's twenty seven bones in there, and it's so complicated and there was one in the states that sort of worked, sort of like that, but no one had actually used it over in the UK at all and it would be sort of groundbreaking to actually try.

So they went for fusion, so I looked that up and I knew everything they were going to do before I had the operation. I mean I'd actually seen pictures and x-rays of people who'd had, had it done, so I knew exactly what was going to happen. I didn't know how I was going to be able to walk when I'd finished with it you know, but it's been a great success really, he's done it really well.

I started off by sort of doing searches on the internet for rheumatoid arthritis and alternative medicines and got a list of various things like glucosamine crondite and cod liver oil, evening primrose oil, all the sort of things like that, coral sulphates things like this, and I suppose, I still take them, I buy them wholesale from off the net now whether they're doing me any good or not I'm not quite sure but they don't me any harm and I don't know what would happen if I stopped taking them so.

And eventually I, I did see a herbalist properly, a proper qualified one, and I've been going to her for about a year and a half, and she, she basically makes up the medicines herself, but I know there's a lot of anti-inflammatory type herbs that are in the mixtures that she makes up and I've been taking that regularly for a year and a half now.