Well it was, I think it was 1993 that my specialist at the, specialist hospital that I, that I used to go to, sent me to, you know they thought that my life was being, 1993 I would have been in my teens, they thought my life was being disrupted too much and that it would be a good thing and that I would benefit from it. I went to a specialist centre for young people with you know, joint problems and they did various tests and I had, I had a, I did have a MRI scan before I went and they looked at that and X-rays and examined and pulled and poked about endlessly and then decided that it’s too soon, you’ll have it done when you’re in you’re in your thirties and forties, which they got spectacularly wrong.

Obviously there is a shelf life with joints, they don’t last forever so and probably then I would have been 17 or 18 or something like that, maybe your joints haven’t quite finished growing or whatever.

And they think, they thought that with physiotherapy and with exercise, that things could get probably not as better as they would have with joint replacement, but certainly significantly better and it was best to put it off for a few years, which at the time we didn’t disagree with and we didn’t object to obviously then the thought, ‘cos I was rela, well not relatively, I was mobile.

I didn’t have much of a life outside of the illness but I was better shape than I am now and so the thought of obviously, the thought of two operations terrified the life out of me in fact I was delighted when they said, ‘Oh no, no it will be a few years before you have it done yet.

But obviously with what came subsequently, you look back now, if I’d had it done then and the knees as well probably, my life would have gotten started again ten years earlier or you know. But hindsight is a wonderful thing [laugh] and might well have been that something else would have gone wrong or you know. You, you can never say but it, obviously I’ve spent a lot of years in suspended animation almost just sort of waiting for the drugs to work or for this work or for that to work. For physio to work or hydro to work for anything to start working so I that can start living, if you put it in that way.

One bit of advice I was given when I went for my joint replacement for my first hip, and it’s an advice that I’ve had in my head, and every time that I was feeling down, I listen to this advice and what it was is that osteoarthritis patients that have joint replacements recover far quicker, they are up and out of bed far quicker than people with rheumatoid because they just perhaps have a couple of joints that are affected, rheumatoid is an all over condition that every joint is affected and you are not as good, and I can remember a friend said to me that had a joint replacement, don’t look at the osteo patients jumping out of bed and trotting off down the ward, she said, look at the rheumatoid ones, who won’t be as good and she was exactly right.

The ward was about thirty six beds long, most of them were osteo patients in their eighties and seventies, up and out of bed up and down the ward, struggling, but they were there, and there were perhaps four or five rheumatoids and all of us were on the beds so many days later and struggling getting out of bed, and I remember thinking, ‘hang on they’re osteo, because you compare yourself and you think, ‘gosh why aren’t I as good as them?. I did more so because I was only twenty six and they were seventy and eighty, and I’m thinking oh my God look at that old lady out of bed, up and down the ward, so I kept thinking ‘Hang on they’re osteos, they’re osteos’ so take no notice, the osteos are up and down the ward like the billyho so look at the rheumatoids.

And how long did it take you to sort of beetle down the ward and?

I never really did. For me because I had problems with my other hip as well. So, and I was quite ill before I actually had my joints replaced, I had been bedridden for months on end, so I was very weak as well, so I was perhaps not your norm to have a joint replacement.

And I did find that the nurses tended to, I was in a general orthopaedic ward, which I think that’s what happens a lot, and they’re there, they just see the one joint, they do actually have rheumatoid wards which I think is a lot better if you can go in one of them because the nurses are trained and know that you are, that you’re rheumatoid and that you are not going to be as good, they had, in the ward that I was in, they had, after four days your were up and you had to walk to the bathroom to have a wash, well after, I couldn’t, after four days I wasn’t well enough to have a wash, it was too long to walk, you had to carry your soap bag, which of course I couldn’t carry my soap bag because my hands were sore, so I was allowed to have, to be washed, a bowl to my bed and I can remember some of the older ladies saying ‘why is that young one getting a bowl to the bed and I’ve got to walk the ward’, that sort of think you know. So I can remember that.

I came home on Monday, which was very strange, I felt like I was like I’d been I don’t know, I wouldn’t call it prison but it, it’s very isolating to be in hospital and not see people and not be out in the street and because it was in a big city, I came out and people walking everywhere and cars and I felt flustered and panicked and a bit confused. But that’s normal I think when you came out of hospital especially if you’ve had that kind of operation.

You tend to feel a bit sort of shaky. And so I got into the car and I came home and had a mince pie [laugh] and but even when I got home I thought I would feel better, but I don’t know what I was expecting to feel when I got home. But it wasn’t the same because everything I’m used in the home is more like a challenge ‘cos when you have you’re hip done you can’t sit with your knee higher than your hip joint. It has to lower otherwise the angle’s all wrong. So that was difficult making sure that all the chairs were high and just the kind of thing that you don’t really think about.

So ‘cos I have a high bed and a high chair, at my computer in my room and I stayed in my room for most of the time which again was quite isolating. But it was difficult but it was also I think necessary to sort of heal myself inside, as well because I’d, I’d been used to a different way of life when my hip was bad, used to not walking very hard and not using the bus and having someone with me all the time. And being on my own was quite lonely and, and my boyfriend would come around a lot and see me and that was really nice to spend time with me, and take me out in the wheelchair. But I think it was necessary to get used to myself a little bit, because I think I was depending on other people too much.

But no as I say, generally speaking the procedure, the surgery itself has been relatively straight forward and thankfully, and even though, on the last one they broke my leg, you know. The consul, the surgeon says, that long term it should be no more than a hiccup, no more than an annoying little slow down, which it has been. You know, you think when you’ve gone through three operations and you’ve come through them, apart from the little bumps in the road and the difficulties, you think, ‘Oh you know it’s the fourth one now. You’re in the home straight, this is gonna be over with and then’ and then they, clumsy little buggers, break my leg.

Yeah. He said three months and I’ve looked, as I do with everything these days, I’ve looked it up on the internet, looked at broken legs and broken femurs and it is the, believe it or not, the strongest bone in the body, the femur and when it breaks it does take a long time to heal. It can be up to 6 months. So I’ve read on there I don’t think it was a particularly bad break and but yes three, three months is a long time but I mean it’s been longer than that. It’ll be, if they take my plaster off next Thursday, if they take it off and he’ll only take it off if he’s, he won’t take any chances, if he’s absolutely sure, it’ll be 17 weeks, so that’s four months.

But, you know, no if it, and it’s really hard, you, you wouldn’t really understand how hard it is, ‘cos obviously the, the only, the, the golden rule is you can’t put weight on it, don’t put weight on it, don’t. But it’s really hard when you, even if you’re just transferring from bed to chair not to put your weight down. Your brain, your whole body’s geared towards putting the foot down. So you have to be really quick and ‘up swivel and down’ sort of thing. But yes, its a, I think it’s a, a bone that takes a, a long time to heal at the best of times I suppose, when your bones are relatively healthy which mine are not.

Then I had an ankle replacement about 12 months ago. Unfortunately my, my ankle became dislocated little to my knowledge, I didn’t know that was the case, because probably as many, many of arthritic people will tell you, you’re in pain all the time so you just think, ‘oh this is just another pain’ so I didn’t realise I was walking around on a dislocated ankle. And after an x-ray, it was found that I had a dislocated ankle so they wanted to try and not fuse the leg because that would have given me like a straight leg, so they tried pinning it first.

So I had, they pinned it and that was in the May and they straightened it up but it didn’t hold, so in the November, I had it replaced, and that was about, oh, just about 18 months ago. And then I’ve just had my left ankle replaced, because it was so good, the operation was such a success, but unfortunately I, I did have to go private, for the operations on both my ankles, because of the waiting time to have the first operation done. If I hadn’t had the first operation done there was a possibly that I could, my leg would have broken, so and it was an 18 month waiting list at [name of hospital] so it was necessary for me to, to go private for all, both all my ankle replacement therapy basically, all the other bits I had all done on the national health but.

Oh no, I mean, there, I mean, the place I went to they’re very quick. You go in on the day you have the operation. So I arrive at 10, and I was ready and in the operating theatre at 12, and I was out of the operating theatre by 2’30 so it’s very quick and then that was on a Monday and I was discharged on the Friday. They just, they’ll let you go as soon as they know that you can look after yourself at home and they get you up straight away, on the second day after you’ve had the operation. So no, you’re not and also they’re very aware of the fact that you have arthritis and being in bed doesn’t do you any good if you stiffen up. So no, I wasn’t in there long at all.

And when you came home you’ve been able to, well get around a bit?
The first two weeks, they, the, I think this is what they say ‘cos you’re not in hospital long they make you rest, you have to rest so you’re in bed really for 2 weeks. So the ankle can heal and take, and that was probably hard because that’s when I had to get neighbours to let people in ‘cos I couldn’t literally get off the seat without somebody taking me off the seat and couldn’t go to the bathroom, couldn’t do anything. Now that two weeks is over, I am free. I’m allowed to hop around part of the day and then make sure I have it up the rest of the day.

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 whod 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.

Well the first was to remove joints at the base of my toes, on a, and I’d thought it was just to remove the lumps that were making it uncomfortable to walk on. But this was case in point of an arrogant uncommunicative surgeon, who said ‘Yes we can sort that out for you’, and with hindsight I should have said ‘And what precisely are you planning to do Mr Dah-di-dah?’ and it was only when I came round from the anaesthetic and the following day sneaked a look at my X-rays that I found he had just removed all the joints, with two cuts right across the base of the toes and right across my feet;

So all the joints had gone and effectively from having size eight feet I then had size seven feet. And pins sticking down, u; from out of the end of the toes up into the feet and my toes in, at odd angles. That was the most shocking experience. And the next time he came round on the ward I hid under the bed clothes, so I couldn’t even face I had, I had no idea what I could say, I was so shocked and angry. Then the next operation was to put some plastic joints in the big toes to try and improve my walking;

But it was found the year after they were put in that those particular joints didn’t work very well. And they didn’t work very well, so the operation last October was to remove those plastic joints and I remember going to the pre-admission clinic and askin; the registrar and the SHO who were there about the experience of the consultant surgeon who was going to be operating on my feet having been through surgery twice on my feet, it was dreadful, and I didn’t want to be having to go through it again. So I was really keen to make sure that I asked all the questions this time;

The consultant couldn’t be there that day. But the registrar and the SHO were there and I said I wanted to know about his CV, I wanted to know his success rate, I wanted to know where he had got his experience. I needed to be reassured that he knew exactly what he was doing. And I said because I don’t want anyone else operating on my feet, and it was only six months after the operation that I discovered he had let the registrar operate on my right foot while he operated on my left foot. And my right foot isn’t as good as it ought to be.

So I’m very angry, I’m very angry, I find it very frustrating that patients aren’t considered and cared for in a thorough and professional manner. And when the consultant owned up to having let the registrar do my right foot he looked sheepish and he kind of did, he did this kind of gesture. He knew he shouldn’t have done it. Because he could see the right foot wasn’t as good as the left foot. And that the problem the right foot has left me with has meant that it’s aggravatin; incorrect walking and is having knock on effects over the rest of my body.

So I’m now getting pains in joints that I didn’t have before. My left hip is now stiffening up and very sore and I’m walking with a hobble. The week before I had this last operation last October I took my dog for a wal; in the local woods and I walked on soft going because it’s beech woods, I walked a good mile. I haven’t taken my dog for a walk since the op. Because I can’t do it. So I’m now looking at even more surgery on my feet.