It’s not natural for me to be this inactive. I’ve, I was always very physical and sporty at school and in my youth and It feels as though this is a second-class kind of life, it’s not really how I want to live and how I ever envisaged my life. I’m also an artist and would have liked to have made art my profession and my life, but I can’t do everything, I’ve had to bring up my children and I haven’t had the physical strength and energy to set myself up with a studio and work as an artist, because I can’t lift things. I can’t move things, I can’t pick up a box of books or move an easel o; you know, or organise things in a physical way without help;

I used to work. I gave up work through the rheumatoid but I used to work fulltime as well and I found it extremely, you know, really hard. It was going to work, coming home and going to bed and then going to work. It was one of those, you know.

How long ago was that?

I finished about five years ago, work. You know I took early retirement and then it’s when the trial started it was after that and. Yeah.

So you weren’t able to cope with work?

No I couldn’t have coped, no, no. It was too much because I was on a computer, you know, keying in and I have it in my hands and you get around it. I was using a pen or a pencil to press the keys. You get around it but it, they time you. You know it’s all different now. You’re timed on what work you do and I couldn’t keep up so that’s why.

So did you have any problems sort of getting early retirement or not?

No, no because they knew I’d had the rheumatoid for a while so they were aware of the way I was. They were very good. They got, I had a chair. I had the desk fitted so that I could work around it, you know.

Ok so they

Oh they were very good, yeah, yeah.

So how did you cope at work?
I did, I used to hide a lot of it but I couldn’t, I couldn’t use the machines and I just was getting frustrated with myself as well. It just, you know, I, in the end my doctor kept saying to me ‘You’ll have to finish work, you’ve just got to. ‘Cos I used to get depressed and upset about it because I, I couldn’t. I, I really could not do my job.

And what was your job?

Oh, but, in, in the beginning I worked in the development kitchen in the lab, in Nestles, in the laboratory. It was quality control, you know. And then that closed down and then I was downstairs in the office only with my manager, just bits and pieces, nothing, they have got names for it but nothing exciting;

So did you retire early, I mean, did you ‘
Yeah, yeah, I took early retirement, yeah. Yeah. Well it was a case of having to. You know, I had to then, yeah. I realised then I had to ‘cos I couldn’t do my job, not to 100%. No, I used to bring work home and that and because I couldn’t do it in the time it should have been done and it was paperwork that just had to be done. You know and it was just, I just couldn’t cope with it.

So is it, towards the end it was office work?
Yeah.

‘ that you were doing?
Yeah, hmm. I just couldn’t cope with it.

Originally I trained to be a horticulturist at college, I went to college for two years and I got. Top results. And I thought I was going to go into that line of work, but, of course, the rheumatoid arthritis affects that line of work. So I’ve not been able to use that so, I’ve hit quite a depression after training for two years, to do something, and working really hard for something, not to be able to carry on with it, I hit quite a depression. And occasionally, I still hit depressions, because I know I’m not capable of doing what I used to do. When I wake up in the mornings I’m still aching.

My back aches, my joints ache. It takes me a good hour in the mornings to get going, so I have to, I always make sure I get up an hour earlier to everybody else to actually get going in the morning still, which means the, the drugs aren’t controlling anything at the moment. And that can run you down quite a bit.

I’ve been working part time for the last two years on and off jobs. One job in horticulture in the summer but it got too heavy, and I was advised by the hospital to stop doing it. And the other one is for a shop.

And again, I went back full time this year and I just couldn’t cope with it at all. I ended up having to give it up so I’m having to come to terms with the fact that I can’t do what I’ve always been able to do.

And I’m having to come to the terms with the fact that I may have to retrain in something new and something different. So not brilliantly [laughs], I’m still not brilliantly coping at the moment. Two years on, I’ve sort of come to terms with the fact I’ve got rheumatoid arthritis but not really come to the terms with the fact of what I can and can’t do.

I still need to find my little niche and what, what I can do with my life. I don’t want to give up work, I don’t want to sit at home, I’ve done that and, it, you end up, your depression gets worse. You ache more, you’re not doing anything, you’re not seeing anybody and you get more and more on a downward spiral.

Yeah. So is there any jobs within that field that you might think that.

Well not really. Everything is manual. I mean, the job I’ve been doing part time, it starts off with just seed sowing and planting or whatever, and that’s quite rhythmical and it’s quite, actually, good exercise for your hands.

But it’s when it gets on to the heavier work of planting on, planting into bigger pots or planting into the ground, that it starts to become more tiresome for your back, for your knees, for your legs, for your, your arms, for your wrists.

So, you know, I can do a little bit in horticulture but there’s nobody that wants you for just a little bit, you know [laughs]. It’s a range of work that you have to do, and, you know, although I enjoy it and it’s nice to do it in my own garden, I’ve had to come to terms with the fact that I can’t spend as long in there myself.

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.

How it has affected your work life?

Well I started a new job, I had the interview for my job and I got the job so I was going to, I was in London and I decided to move home to [city]’ which turned out to be a complete blessing because I don’t think I could have lived away and I’ve had this. So I am, moved home. I got the job, started feeling ill and I started the job but I didn’t say anything to them I, well I said obviously I was in a lot of pain but I wasn’t really sure what had happened. But they’ve been really good. In my old job they, they were brilliant and said any time you need off or anything else, but I didn’t, I hate taking days off work so I got myself in there whether I was half paralysed or not. But they, they were really good. And my new jobs been really good. They’ve said if you need time this, that or the other. But it’s, some days again, just if my back, because I have to stand up all day and walk around, if my backs gone I find it really hard. Or particularly now, I’m just so tired it gets to, it’s so hard to get up in the morning. And then I get home and I just can’t do anything. And that’s why I’m so grateful that I’m living back at home because I just don’t think I could, you know, cook and clean and wash and do everything you need to do in a house that I’ve done for the past few years. The way I feel at the minute, you know, although I’m so much better I don’t, I’m still not 100%, I still couldn’t do that.

So in terms of work it’s been difficult, really difficult, particularly starting a new job, because obviously you need, I’ve had a lot of work to do and you kind of want to prove yourself and be the person you were when you were interviewed for the job. And you do, you just get up, you get on with it but it just doesn’t, it doesn’t help with the tiredness and everything else ‘and with the pain and things like that, that you do have some days. But they’re really good. And the kids are really good. If I’ve ever got my curaheat hand things on, they don’t say anything. You know, I try and cover them but they don’t, you know, they’re really good. And they don’t know why.

You haven’t told them?

I’ve told my 6th Form because they were kind of asking questions and they would, you know, didn’t bother. But, no, the rest of them, just said, I though, I had sore hands. Because, yeah, they don’t, there’s no reason for them to know, so, no, I wouldn’t.

Now what I would like is. What were the effects on your work life? I mean you were training when you were diagnosed?

I was in my final year of university training to be a nurse and I was working on a ward when I was diagnosed. They were extremely supportive of everything. Just absolutely brilliant in understanding how I felt and giving me time and if I needed to stop, slow down the opportunity was there. I had the full support of my work colleagues. It was brilliant.

Since qualifying I worked in a faster-paced A&E which after a. I think I was there for 8 months and I found it far too much. I was on my feet the whole time and just doing simple things that are required in that environment I couldn’t do because it started to affect my wrists, my ankles, my toes even more. So I thought, I have to stop what I am doing and go to a slower-paced job. And I ended up working back on the ward where I was a student when I was diagnosed.

So that is more manageable?

Yes. it’s not as fast-paced. it’s still demanding. it’s still long shifts, 12-hour shifts but in a way they are slightly easier because you have days off in between to rest, to recuperate. But if I go into work and I’m not right or there’s a, you know, I have tendonitis or something they are very supportive, very understanding. don’t really need to give an explanation. They just understand and give me the time I need to recuperate and recover.

Have you had any problems at work because of your rheumatoid?

Yes I have. They’ve been very good in one way in that they always let me have time, to take time off to go for appointments. I did, every so often, have to take time off sick just to completely recuperate at home and, you know, have a week off. I had, when it reached a real peak, I ended up in hospital for a week and during that time, that was the end of last year, I was off work for about six to eight weeks I think. My plan was just to take two weeks off and just try and completely relax and recover but in fact I got worse and worse and ended up in hospital. So since going back after my spell in hospital, I’ve been on part-time hours but it was very much hours that suited them, rather than suited me. They wanted me in for the mornings which actually for myself is the worse time. Mornings are getting better but to begin with my stiffness would last easily till 11 o’clock in the morning and I was expected to be at work at eight o’clock.

And so at work you haven’t had any problems?

No I’m ok. As I say for this last six months whenever, how long I’ve been on, since April I haven’t made any adjustment in work at all. So I’m quite happy [laugh]. it’s just better for me because, you know, everyone worries about their jobs in this current climate and, you know, the fact that I’m not taking time off work has got to be a bonus.

So that is at the back of your mind the possibility because of the current climate that if you start taking time off because you are sick that might prejudice your job?

Go against me, yeah.

Yeah I understand. So you main worry is, you main concern is what will happen if they take you off the golimumab?

Yeah whether I will start getting more flare ups more regularly due to the weather. it’s going to be going into winter which is, I’m prone to get, you know, more attacks in the winter because the cold weather sets them off.

And you know it’s just going back to again relying on somebody to open milk for me or bottle tops, car door, you know, my car door. it’s all simple things even changing the gears on the car. You know it sounds something straightforward but sometimes if I have flare ups it lasts for a few days so it makes it difficult. Then it’s difficult getting to and from work. I’d have to go get the train, you know, which is a lot, takes longer to get into work than what it is. You know, I can go. If I’m not feeling great I can come home in the car but if you’re having to rely on public transport it’s longer for me to get home.

So if I have to summarise I would say that your main concern now is

What happens next?

What happens next?

Am I going to go backwards?

Exactly.

it’s just. I’ve come so far or I feel so much because even everyone says to me, Oh, you know, you’re just so much better with that. You know, people in work and that’s because I used to be sitting there and holding my wrists all the time because of the pains. You just get on with it but I don’t have to worry about getting on with my job, getting on with my day because I don’t, it’s not, you know it’s not present all the time. I can forget about it. You know, sometimes you forget you’ve got it [laugh]. Then, you know, you’ll get an odd twinge and you go, Yeah maybe I shouldn’t be doing that.

But because I’ve been so well on it just worries me that, Am I going to go two steps back or is it going to go worse than it was before. If you know what I mean, it’s like a, because you’re taken off it will it aggravate things, speed up even faster. I don’t know. it’s just things you worry about.

And one of the concerns is the job situation?

Yes.

Ok.

Yes, yeah because in this climate it’s happening in our. I am part of corporate services which my bosses are down in [city name] and they are already having a big restructure of everyone’s jobs so nobody. I know we’re in the North but it’s again everybody is under. You know, nobody [everyone] is under scrutiny, you know, scrutiny and it can be anyone next time. It could be North or them.

Obviously

Have you ever, you know, felt discriminated against because of your rheumatoid arthritis?

Yeah. When applying for jobs. You know, people have a preconceived perception that someone that sort of would put rheumatoid arthritis on an application must be severely disabled or severely handicapped. I mean, I’ve put on applications ‘Have had rheumatoid arthritis X number of years. Time off in last year from work zero days. And have not had a response.

We actually, we, I was a bit cheeky, I actually did this quite a long time ago, was testing the water out and we randomly sent out CVs changing the addresses and that and putting my, my skills through on an application and putting a friend’s skills through that didn’t have as many qualifications, or didn’t match to the criteria as closely as I did but had no physical problems, had two weeks off their previous job with a chest infection. I’d put down rheumatoid arthritis, had no previous time off. They get offered an interview, I didn’t. And it was just, you know, it was something that I wanted to prove for myself that despite what people are saying there is still a lot of discrimination.

No theres really nobody that I’ve sort of not sort of not told. Work as I sa; originally everything happened while I worked for one particular company. I then joined another company, after I was made redundant, and I didn’t actually say anything about the arthritis at that particular time at the interviews and I did feel that when I started to sort of talk about it once I’d started work there, that they perhaps didn’t feel, perhaps as happy with it as I perhaps assumed that they would do.

I suppose I was spoilt by the fact that everything else happened with one company, they actually see, see it develop in me and really sort of took it for granted and knew what was going on, where perhaps somebody else didn’t, which is why I tended to become more open and will, would discuss it with people rather than perhaps let them wonder why I’m struggling to do something that they can’t understand that I can’t sort of you know, carry out quite easily. I’ve sort of found it easier to, sort of cope with things that way by sort of being honest and you know saying, rather than try to put it behind me and just sort of try to soldier on;

I’ve been abroad, I’ve, I’ve had good jobs, sometimes your disability can work in your favour, you’re actually, they have to take you on because you have a disability and that has got me some good jobs in the past. My job with British Telecom they had to take on a certain quota of disabled people, so I got a job. Whether I got a job because of my ability I don’t know, but at the time I thought ‘well I’ve got a job, you know so. I believe in using my disability to get perks when I can get them.
And you know, since you have been made redundant have you been for a few interviews or ..?

No this was my, this was my first interview. What’s happened was, because I can only work limited hours, I found it very difficult to find work that would allow me to do them limited hours, because a lot of them want twenty hours or full time, so there’s been very few jobs I, I could apply for.

What I did was again, through speaking to other disabled people a friend of mine told me about an organisation that specialises in finding work for people with disabilities and will send you, instead of you scouring through all the papers, they will regularly send you jobs listed and they sent me, they sent me various jobs, loads of them, that I just poured through, I didn’t have the energy to go through the papers.

I did do that as well and I did do my own research, go to the job centre, go to staffing agencies and this particular company sent me a job and although I did see it later advertised somewhere else, and through them I saw this job, applied for it and apparently if you have a disability you get a fifty pound grant towards if you get a new job, which you don’t get if you are able bodied, do you know what I mean, so I thought, ooh, so I actually found, I got accepted for the job yesterday. I’m a little bit nervous obviously about going to a new job, after twelve years, but I’ll see how I get on. I suppose nearer the time I’m going to start get anxious. So I have found another job.

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.

I was sixteen. I left school at sixteen.

OK.

When I did my GCSEs.

Did you go to college or’?

I did go to college. I went to college in the September. They accepted me into local college. I went to do an administration course. Because I like to be on the computer and I like to type. I like to do things like that. And I thought you know an administration course is good. The only trouble was I had a teacher or tutor that wasn’t very understanding. She wasn’t very nice. She didn’t like me because I was in a wheelchair, because she said I was a fire hazard. She actually said, ‘You’re a bit of a fire hazard in your wheelchair.

She wouldn’t let me join in onto some of the practical coursework because she said if I worked in an office, I wouldn’t be able to bend over and pick up the paper on the floor. I wouldn’t be able to pick a box. And I said, ‘Well in this day and age if you’ve got a disability and they hire in an office, you do the practical thing and ask somebody to help to you with lifting things, or they don’t give you things to lift. She wasn’t very nice at all. So I did report her because she was’ I mean it was kind of like, they had facilities for disabled people because they had a group of us. So they’d give me ‘ I was on the fourth floor. They gave me a radio walkie talkie so if the fire bells went or anything I’d have to radio through what floor I was on. And then I’d have to sit in the stairway in the wheelchair in the fire exit thing which is in the stairway. And once they left me up there. ‘She’s all right, we’ll just leave her. They did have lifts and stuff but I did, I did report the teacher I had for being not very nice. And she actually said to me, ‘Oh well you’ve done a lot of coursework, but I won’t put you for the final exam because I don’t think you’re going to be able to work in an office. So I left college. And I’m, I won’t go back to that college because she soured me. She did. I’m like no I’m not going back to college, because she was horrible.

Who did you report her to?

The actual, I wrote a letter to the college. The bosses and I think I wrote a letter in my own words. My mum didn’t even know I was doing it. And I used one word, discrimination, and they all went, ‘Oh no, she used the word, discrimination. And they had, they had a meeting, literally two days after they received the letter. And I explained to them what had happened. And she was in the meeting and she tried to play off, ‘Oh no, I didn’t do any of that. But I had witnesses. So she basically got told off for it.

And you went in there on your own without your mum on your own’?

My mum and dad came with me to the meeting. But they, I wrote the letter. And then I came down because my computer was upstairs at the time, and I said, ‘I wrote this letter because I’m not happy with the teacher and stuff. My mum said, ‘Well if you want to do, if you want to send that, then send it. Because she wasn’t happy with the way they were doing things. But I was at the age where my mum couldn’t go in and complain. I had to be the one to do it because I was, my mum was only, she only knew what I told her and what she’d heard. So I was the one that was kind of I had to do it everything like from reporting and stuff because it was me who experiencing it. But you use that one word and they don’t like it. And obviously yeah she got into trouble. But I won’t go back to college. I did want to do an online course.

I went into work and I missed two days because I couldn’t move and I went into work every other day. But literally I’d get in for eight and left at quarter passed three. I couldn’t do anymore. And I just sat and spoke to the class. And I couldn’t move. And I just, I got friends helped me get to my room, just walking really slowly, making sure kids didn’t bash into me because of the pain. And then I would just sit there all day until it was ready to go home. And I just’ because I didn’t want to be have to calling in sick and the school were really good. But I wasn’t going to calling in sick every day. And they also said, they were really good, they also said that if I had a free, I didn’t have to go in, which gave me a’ I had a couple of frees first thing in the morning, which meant I could sleep in until say nine oclock and get in for ten oclock. And that was a massive help. So I think talking to your employer is something that’s really important, particularly in the early stages, before you’re on the right medication. I mean people, different medications suit different people and before you’re on the right medication, talk to your employer and make sure that they know because certainly mine were really good’ really good before diagnosis.

OK. And the new employer also?

Yeah. Well I’ve had, I haven’t had, apart from tiredness and sometimes my back and my shoulders will hurt, it’s nothing like I was, nothing like I was. So they’re aware of it. And they’ve said, ‘If there’s anything we can do, then just let us know. But I haven’t had to have any time off. But it just means some days I’ll leave earlier or won’t be as able to get as much work done in a day as I’d like. But other days, I’ll be great. So that’s absolutely fine. So I haven’t had to have’ since it’s been fine.