So I think yeah it’s the positive sort of partnership that you know we are there and I mean not only me but the rest of the family are very supportive. The older children are very responsible and very understanding and supportive and fortunately their partners are a part of this big, big family that we have and we have family locally so I mean Christmas Day we sat 19 down to lunch or to, to supper and you know, everybody pulls and gets, contributes to that so I think, yeah, it’s all about that holistic sort of well-being together and accepting that some people can’t do exactly the same as other people but within a team everybody contributes to that team.

You have a good sense of support?

Yeah, yeah, I mean I’m not the, I’m, the key support, I’m just part of that, that support team really, It’s what mec’I guess because you know I have this relationship with my wife then perhaps I’m there 24/7 but you know there are other people around that are willing to come in and support, like her parents who are fortunately still alive. They contribute on a daily basis, in terms of communication, work around the house, my father-in-law still helps with the garden and yeah around the house so, yeah everybody sort of is part of it really.

So what do you feel has, have been the most important factors in helping you to cope so well with it?

Our relationship I guess really, the fact that [pause] it’s happened and we have no control on that happening is not a reason to not be part of it. You need you.. it’s, it’s an acceptance from my point of view that it’s prohibitive to my wife’s activities sometimes, but I know that in a positive mental state she is very supportive of what I want to do, so it’s a mutual support and respect I guess, that continues to sort of keep this going.

Oh, well, I like think of course it flows from, from me to her Whether she’d agree I don’t know but I reckon certainly, I put in, put in the hours, of, of reassurance and hugs and kisses and, ‘I’ll do that for you and you go and sit down and let me do the washing up,’ and, and so on. So I, I do a fair bit. And friends and family have commented commented very favourably on that, in a superficial way. Of course it’s not quite the same as as deep support such as taking responsibility for the whole family and making the big decisions

No, I think that, there, there is a slight shift, on, purely on the physical side obviously towards greater dependency on me. I mean, for some years now she hasn’t been able to get, if I’m not there she can’t have a bath. So, she just can’t get out of it again and that kind of thing. So I, there are certain, certain things she relies on me to, to do and they won’t get done if I’m not there. But very few actually. Otherwise she will, in my absence, do them still, but with increasing difficulty.

And, so how much do you, would you say you actually felt burdened by her condition?

Quite a bit. But primarily not, not by the, the actual imposition of my time of, of, you know, darting out for, to put things in the bottom oven or, or lift the kettle or something, which I don’t mind doing at all frankly. It’s dead easy.

I mean I don’t find it very stressful, I just find, you know the situation is, I mean she’s in pain and I, it’s almost like attending, attending one’s own child being born, except that, that has a happy outcome but to see somebody you love very much in great pain and you can’t do anything about it is just quite distressing. So I feel distressed.

And how do you cope with that?

Well I, you get on with it. I mean, try and do the odd little thing to, to alleviate the pain and, and give her a hug and then frankly what else can you do? I mean she knows there’s no, there’s no cure in sight immediately so, so I get back to work at my computer, or something. Take the dog for a walk or [laughs].

No. We were only girlfriend and boyfriend when this all started. So, he’s [laughs] he’s been my rock really. I don’t know what I would have done without him really. He is good, so.

So, when you got ill, he moved in to, to support and to help you.

Yeah. Yeah.

That’s nice.

It is, yes [laughs]. Especially when we met on line as well. Bit odd, so yeah [laughs].

So your relationship, in a way, became kind of stronger?

I wouldn’t say it was the same as a normal, I wouldn’t call it a normal relationship but it is’ Difficult to explain really. He, because I’m different, I’m not the same person I used to be. Nowhere near the same person I used to be. I’ve had a lot of my independence taken away.

He’s been there, I don’t like putting on him though, although you have to sometimes, I’m stubborn [laughs]. I try to do things and then he lets me go so far, and then he’ll take over [laughs].

He made a mistake one day, when, just after he moved in, actually, he said, ‘Would you like me to cut your dinner up for you?’ I said, ‘I don’t think so. [laughs]. And he said, ‘Okay, I won’t be asking that again. But I suppose it is because I am so stubborn that I do try to do more than I’m supposed to. I must admit that. I don’t know what I’d do without him.

I suppose I am lucky, I know I’m lucky, I am lucky that I found him and he found me, at the time we did, because I don’t know what I’d have done otherwise, I really don’t. I was a single parent anyway, when I first met him, so, which is hard enough when you’re able bodied, but then, when you’ve got a lot of illnesses, it piles on the stress even more. And then, eventually, I couldn’t drive either. That was six years ago, I gave up driving, because I couldn’t do it anymore. And that really hurt. That really affected me badly.

So, you can’t drive now.

I haven’t been able to drive for six and a half years. And I hate it. I really hate it. Can’t stand it. I was very, very independent, very independent, now I have to sit there and say, ‘Oh, would you mind taking me here? Would you mind taking me there?’ And then you feel bad because he’s having to stop what he’s doing all the time, and take me here and there. He says, ‘Yeah, but I don’t mind. And I say, ‘Yeah, but I do. But there’s no other way round it. So.

It’s only now, that they are older, that we seem to be equals in as much that my son lives abroad. Before my husband died, we would visit them once a year, they would visit us the next year and so on but as I’ve got older it’s been a case of, ‘Do you think you could manage to come out, could you get on the plane all right?’ In fact my son has come over here, stayed a couple of days, collected my husband and me, taken us back on the plane to where he lives and then coming home, he’s come home, stayed a couple of days with us see that we are settled in and then he’s gone back. But that’s a very expensive operation for a man with two children.

But he needed to do that. I mean, in, in the early days I would have fought and said, ‘Don’t be so silly, we’re not imbeciles, of course we can get on a plane’, you know, ‘We’ve done it before, we can do it again. ‘Yes, but you’re a lot older now. And so am I’, he says. And he needed to see how, even with care, we coped. And that is the same with my daughter.

She gets over-protective at times, which drives me up the wall and across the ceiling because I feel, ‘Look I’m still your mother, you’re still my child. Sometimes it reverse, seems as though it’s reversed round’ and I have to say to myself, well I don’t have to say to me, I have to say to God, when I, I say my prayers, ‘Forgive me for misinterpreting her intentions. And again it comes up with this, ‘She meant well [laughs].

My Mum was my first port of call and I cried for ages but she was very, very good. She just said, ‘You know, it’s early days, we’ve got to just, you know, go with it and just deal with it as it comes. She was very good, came and stayed with me and yeah, it was hard work but it was, it was good. She was very good.

My Mum, I’ve more recently, last, especially last year when I had the two replacements done, my Mum was very, I think she was quite upset in one way the fact that she is of her age and is more capable than I am. And she went through a phase of finding that very hard to deal with, that she was doing the things that I should be doing for her. It should be reversed roles. And I had to sort of try to explain to her that you know, I do what I can do and I don’t want her to think of me as not being able to do things, I want her to just act as normally as she would do if I wasn’t, didn’t have anything wrong with me. It’s very it, she went through a stage of, she didn’t pity me but probably feeling sorry for me and wishing that it wasn’t me it was her, she went sort of through that, that time. That was quite hard, yeah.

I definitely would say the most difficult thing is that, every single physical task is, is made more difficult. And not only that but when you are dependent, which I am at the moment, I haven’t always been but I am at the moment, you rely on, you go to everyone else’s clock, to an extent.

My mother and father both work I have to go to the toilet in the morning before my father goes to work. I have to get up at half past five to go at quarter to seven, go to the toilet before he leaves for work. I’ve sort of trained my bladder to be, to be still all day till he comes home. And then I have to go to the toilet at night at a specific time so that he can go to sleep to get up the next morning. And, you know, they don’t have much of a life, they don’t have much of a, a social life but they, as I say, they work and they’ve got to go shopping and do what ever and obviously they try and accommodate me a lot but to an extent you’re going to somebody else’s timetable.

She, I mean, she likes to be able and do things herself so to a certain point she would. It, I’ve got to be honest, I could after a while see when I really knew she needed things, and probably earlier on it was more frustrating, she probably was less, less inclined to sort of ask for help until it got to a point where perhaps she’s got no choice. Nowadays, because she’s had the illness for a fair few years, it’s not something she probably does really have to, she doesn’t hold back on because we’re used to it, we deal with it, it’s part of our life, whereas before when it was new, it was almost like, you know, frustration that we’d like always had to keep things to yourself and just try to do things, stupid things like taking shoes and socks off, things like that.

There’s going to be days when we’ve still go to do that there’s no, there’s no crime asking for help, but it’s taken a few years to get that point which I could probably understand because, not it’s, I mean, I cope from that point of view, it’s, it’s not dignity anything like that, it’s just frustration of not no.., not being able to do day-to-day tasks yourself and that, that did, I could tell that bothered her because she, she didn’t want to sort of have to rely on people like that.

Nowadays you know, we’ve, you get a lot of good days, but there’s gonna be the odd bad day and you’ve got to face that and I think it’s, it’s taken a long time to come through that and realise you do, you do need help on these things. So she’s, she’s good like that now, but it’s been so, it’s been a while, I can, I can sense it as well, you, you do get a sixth sense for when it gets bad and you know you just keep, I just keep bothering her sometimes if I know it’s, you’ve gotta do it sometimes because if you badger someone long enough, then they’ll think ‘oh, you know, sod it, I’ll let you do it’ [laughs]. Yet, it’s, it’s not too bad now but it was a problem.

Have you ever been to a support group?

No way. I went once. One of the local old gentlemen round in the village decided he’d do volunteer work and he’d take me to this rheum, rheumatoid arthritis, ‘RA club it was called. It was in a church, church hall. Unfortunately the church hall was in the middle of a busy town and he was a dear old thing but he would look at me while he was talking to me, so we’d be bowling along about 45 miles an hour and he’d suddenly say, ‘And how are you today?’ And I’d be, ‘Ohh’, grab, trying to grab the wheel to keep us on the road.

And I didn’t like the, the actual club very much. It was because people were inclined, after the first five minutes, ‘How long have you had rheumatoid arthritis?’ ‘Oh, you were very young. ‘Oh I’ve only just started it this last year. And I’d say ‘Well I feel very sorry that you’ve got it. But what else can you say? They were all self not connected but ‘if you haven’t got arthritis you shouldn’t be in that club attitude you know and I didn’t like that. And I didn’t like being brought a cup of tea and biscuit and told, ‘Now you drink that and you eat that’ as though I was 5 years old.

I didn’t like a game that they played. The second month I went to it we had this game where you were given a sheet of paper and it just had squares and on, in the squares were numbers and somebody threw a dice and you had to get a six to start off that and you had to put a round like O in this square and then the dice was thrown again and if it was a four you put one leg on the bottom, Beetles, Beetle-drive was that. I thought that was idiotic, that was doing no good for my fingers and as for my brain well that had gone walkabout out of the door. I thought, ‘No way’ So I decided, ‘No I wouldn’t go. I, I’d make my own things. So I joined the local Art Club in the Village Hall and dabbled around there and made my own things.

One of my, the best things I did was actually join Arthritis Care, which I didn’t join until I was quite old, in my twenties and that I would say was really good for me because it meant you could become a member of Young Arthritis Care and we actually, I actually was a founder member of a Young Arthritis Care group in this area, and I met quite a few people with arthritis that were younger and that to me was really good a really good turning point.

Some people with arthritis don’t like to do that, but that’s mainly because I mean, perhaps they don’t want to go along to a group and hear everyone talk, moan about arthritis, but I sort of went along and did mine and just switched off to people who moaned about it and sort of chat to the positive ones really and find out how they overcome, what they’ve done. But from our group a lot of people sort of were picking my brains because a lot of them had perhaps got it in their twenties and I’ve had it so long, so they were sort of picking my brains as to how, what I’d done and what tablets I’m on and that sort of thing. So you just learn from each other really.
And what sort of things happen in the support group, apart from just talking to each other?

Well we had a lot of the stuff in the support group we did, we went out on days out, we hired a tail lift coach and went down the coast and tried to make pleasure things, but then we had a lot of talks, we had a talk by a local Rheumatologist who came along and talked about how to manage the condition, we had a talk by a physio so that was quite interesting. I would only say for people that are newly diagnosed, for people like me that had it as a child I didn’t really want to hear about physio because I’d done it and been there.

So, but you had to cater for all the people in the group. There weren’t many of us in it because obviously there’s not a lot of young people in the area and the group was, it was sixteen to thirty five I think it was, Young Arthritis Care but they’ve now expanded to forty five, so after forty five I don’t know what happens [laughs]. Actually a lot of us, I think they might have done it to forty because a lot of our group folded when quite a few of the members became over forty, and we were all classed as too old to be in the group and it folded.
But presumably you were all quite keen to, sort of, still meet or?

Yeh, well a lot of the people I do keep in touch, I, a few of the people I do keep in touch with, we are now friends, but some of them have gone along to the older group, the Arthritis Care group in our area, which apparently has over a hundred members and I have been a few times, but it’s full of old age pensioners that have had it for five years and come tottering in with a stick and say, ‘Oh I’m gutted I can’t’gutted I couldn’t do my two mile walk today’, you know that sort of thing. So I thought ‘oo whoopee do you know, so I did, I have tended not to go to it to be honest. But it is quite a thriving group and I sometimes get the programme and I look through and see if there is anything that I find of interest, but obviously it’s not listening to your local Rheumatologist or I mean for me it wouldn’t be, to be honest.

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. Theres ARC and theres Arthritic Care and whether its ARC;

Anyway, they run a 6 weeks course an; 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 tha; whilst the course doesn’t aim t; 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 i; 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;

So it affected you emotionally?

Yeah I mean, I’m quite an upbeat person anyway and, you know, and I’ve learnt to, learnt to sort of live with it and, and I don’t think about it all the time , but, it, because it progressed really, really quickly it just, you couldn’t, you couldn’t being emotional about it ’cause it just completely changes your life you know, you sort of in this upheaval of not being able to do what you’d normally do and, and, you know, and you have to ask other people to do stuff for you and that’s not very nice ’cause you, you’re used to being able to do stuff for yourself and you can’t. So it, it, it kind of limits your freedom in a way it, you can’t just, you have to plan everything [laughs]. And do so like that which is quite limiting but.

I just thought it, like old people had it and that was it [laughs] it was something to do with your, your bones and being frail and old, and I didn’t really know anything at the time but then I was given quite a lot of information when I was referred to the rheumatologist.

Knowing about it obviously is a lot better ’cause you can understand the best ways to deal with it yourself as well as them helping you with medication and stuff, so you learn about the best ways to do certain activities and, how to, you know, like I was given a lot of information and a lot of, things that weren’t just like medically related like how to deal with, certain situations or, you know, how to make things easier and that sos, in that respect was given both sides of the information rather than just.

Can you give me an example?

I went to I was put on a, it was about a five week course and it was sort of more like a sort of social care rather than , just medical care and we were sort, taught about various different sort of kitchen equipment that you can buy and how to use it and exercise and diet and, sort of it covered everything really, that you wouldn’t normally get from your doctor and that was really good and that was about, about an hour to two hours every week for about five weeks and it covered a whole variety of things, so I got that, that sort of care as well which was really good.

And who organised that?

That was through the hospital.

Okay.

Yeah through the [name] hospital.