I can remember times when I couldn’t even pick up a teaspoon because it was so painful. The most extraordinary intensity the pain. And all my instincts when I’m in such pain is to stop doing whatever I’m doing and to keep still and to try and nurse the joint but in fact since then, and probably too late for, well definitely too late for quite a lot of my joints I’ve discovered that really you’ve got to keep moving. The best way to, to save a joint from complete destruction even when it’s inflamed is to keep using it; physio, physio, physio. I’m a huge great believer in the power of physiotherapy, an; hydrotherapy in particular is what over all these years has had the most beneficial effects for me. Weightless exercise to keep the muscles in good condition an; not put a strain on the joints. So I wish I’d known then what I know now about how to manage the disease, and reduce the impact on joints of long term inflammation;

I really do, because I think I’d have probably saved a few more of my joints;

After each operation you have physio. I have had various periods of time where I’ve had more intensive physiotherapy like hydrotherapy but it hasn’t, it hasn’t helped an awful lot. Each time, not, not recently but in the earlier years when I was referred to the hospital for physiotherapy or hydrotherapy, each time I would arrive and the therapist would say, ‘Ah yes, we can, I’m sure we can get these joints better than this and get more movement than this. And be very positive about it and I would go through the weeks of treatment and they, they really, they couldn’t really get an enormous amount of improvement. I don’ t think any of the physiotherapy actually increased the range of movement that I had with the damaged joints.

And although the hydrotherapy was, was nice and relaxing and helped a little bit because the water was very warm and it was nice to exercise in, in warm water I don’t think it helped an enormous amount;

I think possibly in the early stages of my neck problem physiotherapy and hydrotherapy helped a little bit. Yes, I think in the early, earlier years of having neck pain the physiotherapy certainly helped with that. But the hips and the knees, and the elbow, I think not, I don’t think I gained anything really from it.

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 relaxatio; too. So I keep that going as much as I can.

It was very hard, the physio is very hard after lots of this hand surgery. But it had to be done and I, after a lot of my hand surgery I was discharged home for awhile and then I went back and lived in a sort of in accommodation near the hospital and went every day for all day physiotherapy because I lived rather a long way from the hospital so I had Monday to Friday physiotherapy and that was the, that was the intensity of it and it was brilliant, really brilliant;

Do you that’s unusua; or do you think that’s’?

I think that was a, unusual because of the hospital where it was done and the surgeon who was a hand surgeon, he had this marvellous postoperative support group of different therapists. And I mean as I feel it’s a waste of money if you don’t get the correct support after the operation you know when it’s reconstructive surgery or it needs to be you know, and you do need somebody to help you saying, ‘yeah you can that’, but you think,’oh no I can’t. You need a professional to say, well I think you can do that and it’s not gonna snap or do something horrendous and that was brilliant, yeah, brilliant.

So even with your sort of background knowledge and you would be sort of in a position to sort of tell somebody else that, you, you needed somebody to sort o; [I did yeah] motivate you?

Yeah. These, these girls, or well they were mostly girls, were specialists though, they were say hand surgeon specialists and you know so as an ordinary physiotherapist, I didn’t have that specialist skill and I needed, you needed that, you need somebody to give you confidence.

And what, what for, was it exercises or ‘?

Yep, exercises.

Ultrasound or something like that ‘?

Exercises, yep. We had a little bit of ultrasound but it was mostly exercise, yeah, do-it-yourself, get on with it and it was each day, it was monitored you know, this is the progress you’ve to make today. Whoa, oh dear. It was very hard but it was marvellous.

It’s a long time of exercises and strength exercises to, to get it right. But it’s generally sort of 2-3 months, possibly four that I was, personally, I was over it and it working well then. Obviously with the broken one I’ve still been able to do a few exercises, they still given me a few exercises to do and strengthening exercises. That’s a, you know, a big thing is to get the muscles strong again to enable you to carry your weight. And I use some weights, ankle weights and they give you a little leaflet to tell you all the exercises to do and how often to do them.

But I’m very much a believer in, you know, not being bullied and taking things at your own pace. I know with joint replacements there’s got to be a certain amount of bullying ‘cos if you don’t get somebody moving then their joints will just seize up and stop working. But I’m also a believer in not pushing somebody too much too soon because a) you can cause damage and I’ve seen people who that’s happened to and b) if it hurts too much and it’s too difficult people just recoil away from the whole thing, and they, you know, it will put them off doing any kind of exercise at all. But I’ve, you know, more or less done it on my own done the exercises.

Well it’s, what they, what they tell you is little and often. Approximately 10 an hour. I don’t think anybody ever actually does 10 an hour. Unless there’s some swot out there somewhere who does exactly as they’re told. [Laughs] But I think that, you know, the general thing is to push it a little bit and a little bit further every time and build it up gradually and as long as you know not to do too little and to, you know. As I say, with the hip it’s, it’s mainly keeping you moving around as much as possible and doing just movement exercises. You can’t really strengthen a hip as such.

But with your knee it’s, it’s about getting the, the quad muscles at the front of your thigh working as well and I try and do, I mean I’m always you know bending ‘cos you get stiff you sort of bend and move around as, all the time practically but exercises as a session I do sort of 2 or 3 times a day depending on what kind of day I’m having, if I’m having a, a low day or a bad day then its, ‘Oh to hell with it I’ll do it tonight,’ and ‘Oh I’ll do it in the morning,’ you know. There’s still an element of that in me I’m afraid but yes, it’s 2 or 3 times a day, 10 or 20 repetitions depending on what it is. The thing with having arthritis in every joint is that there are a lot of exercises if you do all the joints together you know if you do arms and hands and feet and ankles and hips and you know that’s a lot to do all at once.

So yes physiotherapy has been a good thing but they only do what they’re told to do by the consultants or doctors. The doctor thinks you’ve got problems with your knees, you need to get that sorted out, then you go and see the physiotherapist and that’s what they’ll look at is the knee, but the problem might be coming from your feet, you know you might be deferring pain from, your arches might be falling over and it might be foot, feet supports you need that would help the knees and therefore help your hips and your back and the whole thing.

So I always think if they just sort of said, one, well look at the whole body when you go there, you’ve actually got problems with the knees but can you consider doing physiotherapy that would affect feet upwards. Then you know, I was lucky enough to be in a hospital where they specialised again with Rheumatology, and that’s how they worked it. And you used to go to the hydrotherapy pools and you’d work the whole body even though you were probably just going there because you were having problems with yours hips because theres a knock on effect all the way up, so that’s the only complaint.

I would say with doctors, with the physios, you know if they do get a referral can it be considered that its as, the pain may not just be coming from the knee, although you may not be having pain in your feet, it might be somewhere else that the pains deferred from, so which they are aware of, but it’s funny I’ve got a referral recently to see, to go to a physiotherapist and the letter comes and you’ve got an appointment and we shall only be looking at the condition, at the area that the doctors has specified and I know hes specifying the knees because that’s what I’ve asked, because my knees are clicking and because they’re replacements I’m a bit concerned that the muscles aren’t holding onto the knee sufficiently, so I just want some tips on what to do.

And I thought I know I’ve got problems with the arches and so when I see her I’ll ask her ‘How, how, you know, what I can do anyway’ and if I need to go back to him to you know, you’re playing yo yo all the time so, you know sometimes you get it sorted out fairly quickly and you can get on with it, but theres times when you think oh here we go again you need to learn experience again, put it down to, you know find some therapist, bits of information out.

But physio, I used to have physio a lot. When I first had arthritis, I did have a local physio that I used to see regularly. We use, we have a hydro pool about five minutes away from us. And we used to go to that regularly. And do Friday morning hydrotherapy and exercises.

And then we had, we had a place called the [name] which was, were the physios were. I used to go up there sometimes for exercise and stuff. And splints as well, they used to make you splints before the hospital did, the OTs at the hospital, did the splints and stuff. But yeah I was having physio regularly all the way up, until obviously I got to an age, where the hospital couldn’t give you regular physio because I lived too far away. And the (local) hospital here can’t give me physio because I need ongoing physio and it’s expensive. And they’re not really in’ they can do physio if I have an operation. They can rehab me like they did with my shoulder. But I need ongoing physio and they’re not really equipped for that. And it’s expensive obviously. They don’t have the time or the resources in my local hospital. For that. So at the moment there’s no physio. I haven’t had physio for probably about three years since I had my shoulder replaced.

I was having regular physio yeah.

You were having regular physio? OK.

I used to go when obviously when I went to hospital. They used to have in me quite, quite a lot for physiotherapy and hydrotherapy. And I didn’t have a physio here. But that was what physios at the hospital were for.

Have you asked your nurse or the doctor about the possibility of having more physio or’?

Yes. They did inquire about it, at my local hospital, but like I said, they said that they haven’t the resources, and it’s expensive because I am a patient who needs ongoing physio. Yeah. And then they didn’t offer my anything. But they did say that they did offer me’ this is when I went up three weeks ago as well as the infliximab, he did offer me joint injections and physio and hydrotherapy. But obviously I’m at a stage now where I’m so stiff and stuck, they might have to do the medication to get my joints down a little bit before they do physio because otherwise it will hurt more.

So you will need to travel to another city to have it?

Yeah I need to go to [city] for that.

And how often would you go?

I think it depends, they did offer me the physio, the hydro, the hydrotherapy and the physiotherapy on a week basis, for me to stay in hospital to have that. So that I would go into hospital, have my first course of infliximab and have physio and that for a week. And then you know come home. But obviously as far as physio goes, it’s kind of hard because obviously I live too far away from [name]. And my hospital can’t really you know, give me the resources for that so.

OK. So it’s a question of you, the distance really?

Yeah, the distance. Yeah and the fact that my local hospital don’t have the resources and the money. Because I am and I understand that I do need ongoing physio so.

But I mean I don’t believe that I can benefit from physio in a week, you know, like I can go into hospital and I can have physio for a week. And then it not going to work much because I’m not having it again after that you know. I mean it would make happier if my (local) hospital could give me the you know, maybe not even weekly, maybe you know

I loved the hydro, you know. The hydro was, was great. It kept me relatively mobile. It’s been a few years now since I’ve had any courses, I would sort of have, I mean what, what I would really need with the hydro is to have it all the time. But when I used to have it because they can’t or don’t give a sort of endless prescription of it, you have to have sort of a six week course or a two month course and then it would stop. And also the thing with it was that it was in, you had to travel to a hospital that was half an hour away.

So by the time I would get back home after being in the car for half an hour, I would just be stiff again, so some of the, some of the advantages would be lost. But I certainly felt the, felt the effects. After I’d been away from it for a few months, after it had stopped for a few months, I would certainly feel that I needed to go back to it again. It’s a great thing, hydrotherapy because of course you’re weightless practically in the water.

There’s not the weight on your joints, so you can do all kind of exercises without it putting too much pressure on you. So a pool in my back garden would be great. [laughs] but other than that it’s logistically a bit difficult to get, I mean you can do physiotherapy anywhere, you can do it in your own house, you can do it in a car, you can do it anywhere.

But hydrotherapy you need water for, you can do a bit in a bath obviously. There was a consultant once who said to me that because I had such a benefit from being in the warm water, I should have a warm bath every morning before I went to school, which is a bit cumbersome really to have a, be running a bath and sitting in it for half an hour before you’ve got to get out in the morning. But no I found warm water to be a big benefit, great unstiffener and relaxant definitely.

Yes it’s a heated hydro pool that they have at the hospital. But I’ve since found a disabled pool which is good for me because as I’ve said I don’t go down, but this is a slope which is quite good, so that enables me to sort of get into the water without much sort of problem, other than most pools you go down steps don’t you to get into the water, well this has a, has a sort of gangway that you can walk you know which is good.

And how often do you go there?
Well I try to go at least once a fortnight, but because of the winter months, I’ve only just now, I went three weeks ago and I haven’t been back since, but I’m hoping to go again, you know, but I’ve got to find out, they were changing the times that was why I haven’t been, they’re changing all the times of it and I’m hoping that they’re going to have one in the morning times so that it’s no, when I feel worse is in the morning and it would be great to just go and get in the baths and you know be able to sort of do something like that, plus it’s good for me you know, it can’t be bad for me, ‘cos what other exercise can I do? None, which is not good for my blood pressure I would think you know.
And what do you do when you get there?
Although I don’t swim what I tend to do is I tend to stand at the side and I move every part of me, it might only be for a few seconds, but I move it and I kneel down, just to see if I can, and I do but I could never do that, I can’t do that any other time, you know I just cannot do it, I cannot do it, but I can do it in water, makes no sense to me, but…

And did they teach you any specific exercises when you went, at the hospital in the hydro pool?

No, no, no they just said to move, to move slowly the limbs that you can move you know, because they have somebody with you so they go through it with you and you, it’s a very, very gentle exercise, very gentle you know. But I’ve found the one, the other baths that I do go to easier and better than this one in the hospital you know because obviously it’s only small in the hospital and this ones a bit bigger a bit more space in it, for me anyway.

Over the years as I think I said before, the one thing that I’ve consistently found to be of great help in terms of actual physical help and morale building as well is physiotherapy and particularly hydrotherapy. And when I was initially diagnosed I was brought in for hydrotherapy twice a week for 12 weeks and within the first month I felt like a different person and I was really starting to get back on top of the disease. So by the time I ‘d finished that course of treatment I really had improved and I could cope a lot better with my disease.

But the constraints of the NHS have now meant that I am consistently refused hydrotherapy. I have to, I’ve had to badger and make myself into a nuisance to get hydrotherapy. And I could easily have been put off completely. Different doctors have said, said different things.

One doctor at the rheumatology clinic has said look you must have this, you must come twice a year, spring and autumn, you must come for a course of hydrotherapy, to keep you, keep you moving and yet a year later, I can go to the rheumatology clinic and see a different registrar and they’ll look, they’ll look at me as if I’m asking for the moon.

And it’s makes me sick to be quite honest, that something that any sensible mind, any sensible brain could see is of great benefit to somebody whose joints are poorly to exercise and keep fit and strong in water, in warm water, is denied access to it. I now have to go to a self-management group at a different hospital where I am allowed access to a hydrotherapy pool, once a week, and but I have to pay to go to that session once a week, and then I have a 50 mile round trip to drive there and back .

This week I’ve seen, I’ve had a complete physio [cough] excuse me, physiotherapy review asked for by my rheumatology professor and the physiotherapist has referred me for another course of hydrotherapy so starting next week I will be having two sessions of hydro, one with a physiotherapist and one on my own, every week. So for six weeks, because they will only give a six week course, for six weeks I will be in the water in the hydro pool twice a week, for a little while. So I’ll start to improve;

It’s, it’s, it’s attached to an NH, NHS hospital. It is actually attached to a rehabilitation centre which is specific for strokes and that type of ilk. But we, we use it as they rent out the pool to groups. The criteria’s quite stringent, it’s quite simplistic really’ one, you always have to, whatever group you’ve got to have a, a qualified physio present.

And, and that’s what we do. We, we’ve actually got, I’ve got three groups now set up probably soon to be on my fourth group now because demand from the local hospitals as in people being referred to me. It used to be specific for arthritis but we’ve found there are so many other overlapping conditions. I mean, the Thursday group now has got, it’s got about 4, 4 or 5 RA’s.

It’s got, it’s got 2 MS, it’s got one Parkinson’s and it’s got one that’s getting over a, a bad sporting injury so, you know, and it’s interesting because they’ve actually, everybody has learnt something about managing the other ones, like there are so many overlapping things with MS that there are with RA. I mean you know two very different conditions but you still get the fatigue, you still get the you know one day you can do anything and another day you can’t do anything and you know you just get on with it really [laughs].

I actually attend, I don’t attend all three groups, I attend two of them. The benefits to me is I’m like anyone else I’m just a paid person going, the benefit is that I get to see my physio ex on a more regular basis. But also it’s swapping ideas with other people with similar conditions.

It’s that bonding, it’s that being able to relax and to be honest if you’ve got a long term chronic condition and you can take your clothes off in front of other people with similar conditions, where we all know that our joints aren’t quite as shapely as someone else, to have that confidence, it builds up confidence for you to say, ‘Well nobody in that environment is gonna look [pulls face] ugh like that’, therefore you feel more confident to go to the beach or somewhere else or go to a swimming pool where you might have thought, ‘Oh I can’t take, I’m swollen up, my, my abdomen’s swelling because I’m on steroids’ or you know I’ve got this rash ‘cos of the steroids or whatever.

But it it’s just it’s, it’s comforting then. You also know that you’re doing exercise that’s geared specific for people with musculoskeletal conditions, in an environment that’s warm and safe and also with expert tuition and support.