Paul: Yeah, you’ve got to have it. You couldn’t do it on your own. There’s now way. You’d crack up. You’d crack up big time. You have to summat to fight for. You have to have something in your future, ie the kids, and – and the missus [laughing]. And holidays to look forward to.

And you have to have something constant in your background all the time, ie work, to make you get up every day and fight, to keep fighting for. Yeah, you’ve got to have something to look forward to.

And you have to have something constant in your background all the time, ie work, to make you get up every day and fight, to keep fighting for.

Christine: And you’ve always had something. You’re a big sort of diary person, aren’t you. Always have something like a, you know, a month ahead that there’s a something to look forward to, and do something. Meal out with a friend, day at the beach, or whatever it is, isn’t there.

Paul: Yeah, you’ve got to have something to look forward to.

Christine: Forward-thinking of nice things.

Paul: If you don’t make them, if you feel rubbish or whatever, or you’re ill, you find you can’t do them. But if you’ve got them in the diary, you’ve got something to look forward to, so.

I was that tired, I was pleased. Usually when I’d been off work ill for anything, after a couple of days you’re fed up and you’re bored and you want to get back to work. With this one, I was off, and I was like “Oh gosh, thank goodness.” Because I were just exhausted. I mean, I was at work and I drive buses, as I say, and the week before I finished on sick, I was pulling in to say a bus stop, and I was catching the kerb. You don’t think that’s much, but it is when you’re driving a bus. You know, you’ve got to be – everything’s got to be perfect. And I caught the side of a bus stop sign. I mean, that sign had been there for donkeys’ years, so it wasn’t the sign’s fault, it was definitely my fault. And it was little things. I was making little mistakes. And I said “Oh hang on a minute, I don’t want to be doing this, because your mistakes – little ones will lead to bigger ones.” And at the end of the shift when I was coming back in, I was exhausted. I mean, I was so tired, and I knew I wasn’t competent enough to carry on. You know? So I just said like you know, “I can’t do this.” And they said “Well don’t finish. Let us go through the process.” And of course [company] is such a big group, they backed me up all the way, so it was great.

Yeah, how did you feel? Did they support you?

Oh, yeah. They were incredible. They really were. When I was off on sick and things like that, they were absolutely smashing. You know, I had go and see the management – after you’d been off so long, you’d to go and see the management and things like that. He was the one that advised me what to do, and – you know – absolutely spot on.

Yeah, what did they sort of say? How was the conversation?

They said they’d be sorry to lose me, but obviously they felt it was in both of our best interests, because I wasn’t safe. And I knew I wasn’t safe driving the bus. I wouldn’t have gone back to work anyway. Either one way or another, I was going to finish. So when they retired me, I was really pleased about that.

Christine: Yeah, you’ve never – never gone through a period where you’ve wanted to sit at home and feel sorry for yourself, and be ill. No. You’ve always worked.

Paul: But that’s also because of the support I’ve had from my employer. I’ve been with the same person, same company, for 32 years, since school. And they’ve backed me all the way. And I’ve been there through two failed transplants, two new transplants. Eighteen, seventeen years of dialysis. And that was leaving work early to go and dialyse at the hospital. When I was on CAPD they provided me with a room with a key, to put my storage in and actually go and dialyse in that. In fact, they actually commented that it’s harder to keep me out of the office, [laughing] than get me into it, so.

Christine: So you’ve been very lucky there, haven’t you. Because when we say you’ve worked full-time, that’s probably not easy for a lot of people out there that have gone into renal failure, and on dialysis and things, because if you haven’t got that backing and support

Paul: I totally understand how people can’t do it. I totally – my brain set was just get up and go in, whether I felt rubbish or not. It was a case of getting up and doing it, and you’d feel better or you’d be keeping your brain going. Even if I felt rubbish at work, I’d still be there doing it. It’s – that, it was kind of a backbone for me.

Christine: Yeah. Yeah.

Paul: For those years, through everything. It was – it’s been there – as much as kidney failure has been my life the whole time, well [supermarket] has been in there, in the background the whole time. They’ve backed me left, right and centre. There was one instance straight after my third transplant – and it happened with the other two, as well. But two weeks after my first, my third transplant, we got a call from my manager saying “Don’t worry about pay, you’re on full pay no matter how long it takes to come back.” Now, that just – pfft – takes the weight off your mind.

With the job that I do I normally I have to be in an office; normally I have to interact with people, well at least I did at the time, the general public. I was very, very lucky in that I’d just started a contract somewhere and it was the second day that I had the job that I was diagnosed and started hospital. So, I was a self-employed contractor at the time so, normally when couldn’t work is they’d ask you to leave and they’d find somebody else to replace you. The place I was working for were very kind; they gave me a laptop and they said I’d be able to work from home. So I changed the nature of the job I was doing with them and worked from home for throughout the whole time. So it didn’t affect my work at all, through all of the dialysis and transplantation, I was working from home so that was really good. Socially it had a massive impact on my life. I moved a distance from where most of my friends and family are a number of years before I was diagnosed, and I would often go into London on a weekly basis, if not every other week, but I didn’t really have any energy for that at all concentrate on driving and just kind of going out and about, it wasn’t really a realistic thing. It was, yeah it was tiring so.

Can you explain a bit more about sort of work, and how you managed?

Yeah, so. We did try before the, that I got – before I got the call, to sort of manage my workload in the event that I got a call to go for a transplant. So I had made up a sort of, a folder of ‘this is what I do, this is where you can find this’, and that sort of thing, so they’d be prepared. They say once you have the transplant, you could look to being off work for two to three months. So I was fine to go back after the two months. To be honest, I felt like I could have gone back a lot sooner, but – you know – it’s best just to, to try and relax and take it easy and recover at home. But they’re, they’re really supportive. And I guess it helps that my workplace is based on a hospital site, so I’m literally five minutes away from the renal unit. So yeah, they’re – they’re really supportive. And being a [workplace unit], it’s – you know – they’re, they support it a hundred percent.

I was geared up to get going, to get back in a job, and to feel good about myself, you know? To be independent. And it was knock-back after knock-back, you know? I don’t think there was enough compassion out there with employers, that could see my circumstances. I felt as though I’d really, you know, fought hard – you know – to try and get out there, and I was just getting knocked back. And I felt very disillusioned. And it got me depressed. You know? Yeah.

What were you hoping to do, in terms of a job?

Well I’d gone into engineering. I’d been to university to get a degree, I’d got that, and still nothing.

Yes. I mean, you know, normal life is working, isn’t it? You know? Accept the fact that I’m not working, and I’m not bothered about it now. You know? I used to have this hang-up about not working, ‘I’m not going to meet anybody because I’m not working. Because I had, I felt insecure, you know? But I had a damn good reason. Even though I tried to explain it to people, they just, you know, they just didn’t understand. You know? And it, you know, it built up a frustration. And it, you know, it’d get you down. But I’ve come to terms with it, you know? So I mean, like I said before, I’m proud of my achievements. You know? But I mean, I wouldn’t you know, I wouldn’t go back into education now. I’ve had enough of that [laughing]. I’ve been on course, courses, you know? I’ve done enough now, don’t wanna be doing that.

And so I then realised actually all the things that I’d been feeling are because of the deteriorating kidneys. And so I’d already stopped working. I was half-heartedly trying to find another job, but I knew really that I wasn’t gonna be able to manage it. But I didn’t – I hadn’t settled myself with the idea that I wasn’t gonna work. I think part of me knew that I wasn’t really up to it, but another part of me thought ‘well that’s not an option, you’ve got to work, everybody works. But once I started on dialysis, I think I just kinda settled with the idea that I’m just gonna have to manage this now as it is. So it was the financial issue that was much bigger than the health issue, for me. Because I’d gone from – you know – I’d always been independent, always had my own house. And always, you know, had the lifestyle that I wanted. And suddenly yeah, I had a lot less money to manage on. And that was a much bigger deal than – at the time, anyway – than the primary health issue. So that took some getting used to, more than anything else, the adjusting your lifestyle to a more meagre income was – yeah, that was a much bigger deal.

I mean, I felt that – you feel almost like arrested development. You just feel you’re just kind of paused. And that, you know, you’re not really functioning on any significant level, until – you’re just kind of waiting for the next chapter, if you will, this is just a big pause in your life. But yeah, I mean, I did find it really stressful, just not being able to, to use my brain to do anything useful. And also not feeling a bit – even if the opportunity had been there, not feeling that I could do it. Because I was just so tired all the time. Yeah. So, you know, most of the time it was okay but yeah, there were some – there some times when it was quite, you know, quite depressing.

Philip: I think a lot to do with it later on, he was doing a manual job, and it was hard work.

Mary: And he found it

Philip: I know, because I worked with him for a few years. Went working in

Karen: He said to me, you know, “I just want to come home [name], I just wanna, I just wanna sit and just sit with my kids. And I don’t really wanna go out, because I’m tired. Tired.”

Philip: It was really tiring. And I think sometimes he tended to be a bit rebellious sometimes, and they would give him harder work then. Especially when he worked for the local authority. They had him putting fences up in the pouring down rain. Digging holes, and – and – which, is

Karen: His job didn’t help his condition really, did it.

Philip: Yeah. He had to, he had to do the job to keep the job. But the people who he worked for didn’t take it into consideration, and didn’t help.

Mary: No.

Mary: Such physically

Philip: And the management, especially.

Mary: Yeah.

Yeah, really demanding job.

Mary: Yeah.

Philip: Yeah. Yeah.

Karen: It’s about, it’s about recognising people have got a disability isn’t it, when you -when you’re at your workplace. And I don’t think the people – the nature of what he did, I don’t think the employers did that really.

Mary: No

Philip: No, no. No.

Mary: No.

Philip: No, but I mean he did that because obviously he wanted a wage coming in. And he had to keep doing it, to get the money coming in. And especially with a young family, and. But it was definitely the wrong type of job for him.

Karen: But I think the nature of the industry that he worked in anyway, a lot of the employers that he worked for. You know like if he worked for the university, we’ve got an equality act, we’ve got to compensate for people that have got disabilities.

Whereas some of the employers he worked for, and he did a lot of agency work, didn’t he.

Mary: Yeah.

Philip: Yeah. Yeah.

Karen: He wasn’t getting that kind of support. So he had to just fit in with the lads, and then work with them, doing with whatever they were doing.

Philip: Well he’d to do, you’d to do the work whatever – whatever they gave you. This is where I went working with him for a while, and you’d to do what they told you. And they used to give you all the rough jobs anyway. It wasn’t a nice job.

Mary: Well I think like you say though, Karen – as you’re older, them kind of jobs are just not for you, when you’ve something wrong with you.

Philip: Definitely the wrong job.

Mary: Definitely

Mary: Yeah. That’s it. A lot of different things were just going wrong with his life.

Philip: And, and I didn’t realise when I did go working with him, – don’t know if it’s relevant to this or not, but – how much stick they did get, when he, when you work there. And there was one lad who, who worked there – there was only about ten people worked there. And he was singing songs about a mute and whatever. You know, this is what goes on. And you start with arguing against it, and then they just make it harder because they give you more jobs and whatever. Like I said, I couldn’t put up that, I definitely couldn’t put up with that.

Mary: But he didn’t really have an option, did he, because he had a family.

Philip: But he had to keep going because of the money, yeah. But I, well I finished, I just left. Well not that I were ever employed there, but I – but I just walked out, I couldn’t be doing with it. Wouldn’t have done for me.