I work for myself now. Again, purely because when I eventually, made the decision to look at going back to work, even though I knew I wouldn’t be able to cope with full time because there’s still the continuity factor of it. The fact that I know that some days I have bad and good days, so to be able to do a full time job and commit to that is very difficult for me because I don’t want to let anybody down and, you know, I know that until I’ve had a really good period of time that I am well and am physically and emotionally able to do everything that I want, then I don’t think that it’s fair to seek employment. Because, you know, if I’m not fully ready then I can’t expect someone to take that onboard.

So really I just kind of sort out something to keep me occupied and keep me working, which fitted in around my lifestyle and around my condition, so that I could work when and as I wanted to because there were no other jobs around that really fitted to what I needed. So it was the case of I either do something for myself or, you know, go for the jobs that I physically couldn’t do that were part time and that were available, things like bar work and cleaning and things like that, which for someone with arthritis, is just not ideal really.

Do you get the same kind of satisfaction with being self-employed as you did when you were working for a company?

I think its different types of satisfaction like I am really proud of myself on what I’ve achieved with, you know, setting up my own business and, you know, having the independence and the ability to kind of follow an idea through. However, you know, getting praise from a team of people and working your way up that was something I really loved about my old job, which obviously, you know, when you work for yourself, the only person you get praise from is yourself. So it’s quite difficult to develop working relationships with people because you’re just dealing with yourself really. It’s totally different experiences but there’s good and bad things to both I think.

I think I’ve always wanted to have a family and have children. I come from a very close family myself. I’m very close to my mum. I have a very close relationship with my sister and my grandparents, aunt, you know. So there’s never been anything else in my mind that was ever going to happen and I suppose, when I was first diagnosed, I didn’t think anything was different in that aspect, you know. But as time has gone on I’ve heard things and I’ve done my research into how my condition might affect my chances of getting pregnant, what might happen, you know, in terms of everything around motherhood I suppose and how difficult life can be to raise a child anyway but with a condition that leaves you sometimes not mobile, you know, how would that work. And but again, I think it’s is gaining other people’s knowledge, you know. I I’ve talked to a lot of people that have got my condition and have had children and gone on to have big families and they struggle but they do it, you know, because that’s what they want to do and I wouldn’t ever want to be held back from, you know, having a family just because of fear, I suppose, of what could happen or what might happen.

So you’re hoping for a family sometime in the future?

Yeah.

it’s always a weird one to ask this, but do you have a particular date, period in mind, age?

No, that’s one thing I think that really is not concerning, but is the difficult thing because the treatments that I’m on I have to not be on when I conceive. So all of my treatments because of research that’s been done on how they affect a foetus. So basically, I have to stop medication for a whole year before I can even try and conceive. So that’s why I guess I’m thinking about it now because I know that there’s quite an actual long period of time between when I say, I’m ready to have children To actually physically having a child because, you know, you don’t know how long it’s going to actually take for conception. You know you’ve got, obviously, nine months for the birth, then you’ve got that period of a year when you have to be clean of medication.

So there’s a lot of things to think about and I guess that’s why, even though I’m twenty five, I think I’m relatively quite young, for me it’s like even if I decided today, Right. I want to have a baby it’s still going to be realistically another two years before that happened. So, you know, it’s a lot to think about really and I suppose I am thinking about the next sort of couple of years ahead now and what might happen there. So…

The decision to move back here, was that for emotional support?

Yeah lots of reasons but mainly emotional support and physical support, you know, being able to actually get around and do things. it’s not easy when you’re on your own and living hundreds of miles away to do things like food shopping. And, you know, there is the post office, just little things that you don’t you take for granted, I suppose, that I wasn’t physically able to do at that time. And again, you know, it’s different between having a face to face conversation with somebody about issues that you’re going through when, you know, the hassles and worries that you’re facing as opposed to talking to someone who’s miles away on the phone, you know. it’s not quite the same thing. So a lot of different aspects that influenced my decision.

You used the word lonely.

Yup.

Is it still lonely being here?

No, not any more. I think that loneliness is kind of dissipated since I’ve moved back here. I feel much more emotionally supported. I feel like almost like I’m back to myself again, even though perhaps nothing is ever going to be the same, but I feel more of myself again now because I feel more comfortable and more relaxed because I know that I’ve got that support network around me that will help me no matter what happens.

Really from the point of diagnosis, I would try and get as much information as possible about what you’re about to face because it can be a very lonely situation and it can be very scary and worrying and all these thoughts about the future and what your disease will mean will come to you. However, nobody really knows. You can’t tell what the future is going to be. So if I could give myself any advice for me back then is to not dwell on what’s going to happen, you know. Just concentrate on the there and then, how you’re feeling and how you can manage and, you know, how you can feel better at that point. You know, and get as much, ask for help that, you know, get as much help as possible because and don’t be afraid to ask for it because I was embarrassed to ask for help and my life would have been so much easier if I hadn’t of just struggled to do things and I’d have just swallowed my pride and asked for help when I needed it.

Did you used to exercise before?

Yeah, I did. I mean I was a gym member and I tried to do as much as possible but I think again, with me now the fact that I can’t do it, makes me want to do it even more and it’s just focussing again on one of those things you can’t do even though you didn’t necessarily do it that much before anyway. So…

Yes. So you don’t have any exercises for the arthritis itself?

I have a few physio exercises and things but, to be honest, I tend to be quite naughty and not do them. I generally do try and be as active as I can like I walk if I can walk. I’ll do things myself but to me, being active is not necessarily about being out there at the gym or going swimming, it’s about being able to get up and down the stairs. it’s about being able to load a washing machine. it’s about being able to cook dinner. That’s different activeness as far as I’m concerned because, you know, I’ve gone from being completely inactive and bedridden, so being able to do those small things to me, means that I’m an active person.

So it’s less about exercising.

Yeah.

To look how, exercising to change the way you look?

Yes.

And more about developing independence?

Yeah.

And maintaining independence?

I think it’s more about being mobile, about, you know, keeping your joints flexible because, you know, sitting around in the same position, as I learnt, doesn’t actually make things any better anyway, you know. You have to have the right balance between movement and resting.

So and again, you know, walking for me, if I can do it, great. If I can’t, then I’ll do it tomorrow instead.

Okay and is your sleep affected?

For me, yeah, personally, it’s massively affected. I think I think a lot of it is kind of habit that for so long I wasn’t sleeping well that now I’m just not used to having a good sleep. And again, yeah, it’s a lot of emotional aspects of your life I think you don’t really consider until, you know, it comes to night time and you go to bed and you try to put your mind at rest and you’ve got all these things kind of whirring through your mind. it’s very difficult to try and relax I suppose for me. So yeah, my sleep is affected but I try again, to not let that get me down too much because then I know the more I think about it the less I’m likely to sleep. So I just sleep as and when I need to, you know. If I feel tired during the day, I don’t let myself feel guilty about it, I’ll just go and have a lie down because I know that it will make me feel a bit better.

That’s my one downfall. I think I take it a bit more seriously now like I think for so long I was told that I couldn’t drink, couldn’t do all these things and it was kind of like that was the one habit that I was like, Well, that’s mine. You know, I’ve always done that. So you can’t take that away from me But now it’s more of a case of social smoking, so I’ve gone from, you know, considering what aspects it has on my health quite seriously now. So no, I’m not allowed to do it as much as I’d like to but I suppose the odd one occasion when I’m with friends in the pub or something like that but no, I wouldn’t class myself as a smoker.

I wouldn’t even contemplate it. The cocktail of drugs that I’m on at the moment, I think adding anything else into the mixture of that would terrify me. And purely, I just wouldn’t recommend it to anybody because I just see how important health is now, you know, and what you take for granted. So to be putting things like that into your body and into your system, whether you have arthritis or not, it just totally defeats the object of trying to be healthy.

And, you know, again my opinions on that have changed as I’ve grown up and as I’ve battled with this disease, you know. At university, things were very different, you know. It seemed to be all around you and it wasn’t, you know, a big deal or anything like that but now it’s kind of got to the point where it’s like, why would you force something upon yourself that will make your health worse if you have the choice not to? So that’s kind of where I see that.

What I was actually diagnosed with was avascular necrosis, which is a condition that is brought on by steroid use. I had been taking steroids and, basically, my hip bone had collapsed and died because of the side effects that steroids actually have on you in terms of stopping the blood supply to your to your joints. So even though it wasn’t necessarily related to the arthritis, it’s all kind of connected in some way, so.

So that that was because of the steroids?

Yes.

Okay and was there anything else that you’ve had done?

No. That was my first operation as such. I’ve been advised, since then, of having, obviously, tests and things on those bones, that the left hip is probably going to need replacing in the next sort of couple of years, just from looking at, you know, x-rays of it that it’s kind of going the same way as the other one. Which, you know, now I’m comfortable with I know what to expect because I’ve been through one operation, even though it wasn’t very pleasant and recovery was a nightmare, it doesn’t put me off really about surgery because I know how much better I feel with the new hip, as opposed to the way I was feeling before and suffering all the pain, is just unbearable.

Okay and it was the, sorry, I think you’ve confirmed this, but this was a side effect of the drugs
Yes.

ou were taking for the arthritis?

Yeah.

And did you know that this was going to be a possible side effect?

Not really. Again, side effects are always there and readily available for you to study and see. I think if I studied all the side effects about all the drugs that I was taking, I probably wouldn’t take anything. You know, it’s scary and there are a lot of things that could go wrong but, at the same time, you know, I put my trust in the doctors and these side effects only are a one in however many chance anyway. So, you know, it’s very unfortunate what happened to me but it couldn’t be helped. You know, the steroids have helped me get through a very difficult period of time and stopped me from being in immense pain. So really I can’t weigh up what’s worse, you know. it’s just again, one of those things that unfortunately, has come as a consequence of dealing with my arthritis.

There is talk of a wrist fusion operation. I’ve been struggling with my left wrist now for quite some months. The only option really there is to have it fused, which would basically, mean limited range of movement for me. So I’m a bit sceptical about having that done until, you know, I absolutely need to but in terms of operation, that’s all that’s really on the horizon I suppose. I think that’s enough to deal with at the moment.

Indeed. And perhaps for the younger viewers, why would.

Yeah.

You need your wrist fused?

Basically, the pain that I’m having in my wrist, the arthritis is quite active in it, do it’s slowly almost wearing down the joint, which moving it is quite painful for me. So twisting, turning, up, down, very painful. When you have your wrist fused it basically means that it stays in one position, so that it it’s not able to move and cause your pain.

So even though you still have the use of your hands and your fingers, you’re not constantly moving your wrist in various, well, as the wrist is supposed to move. it’s fused into position to stop a larger range of movement, which will then cause you pain.

For me it’s the fact that they’re, I am confident that I can comfortably talk to them about any concerns that I’m having no matter how embarrassed I might be feeling about it or something like that. So I mean it’s not necessarily they’ve put me in touch with a counsellor as such, it’s just having the confidence in those people as individuals, that they know what they’re talking about, that they will always try and help me try and find the right information if they don’t know themselves and that fact that, you know, they all work together. I think it’s very clear that the team of people that I see now is, in fact, a team, you know. They communicate with each other, whereas I never had that before in the in the group of people that I was seeing at a previous hospital. It was, you know, so different to the kind of experience I had there and now I think I just feel so much more relaxed that my care is in the hands of people that do exactly that. They care. I’m not just another number, you know. Everything is considered and I’m always offered above and beyond the support that I need, just in case I might ever need it, you know. Things like counselling are always suggested to me and even though I might not necessarily need it right now, I’m comfortable because I know that support is there if I need it.

Could you tell me a bit more about where you’ve been and what you’ve found?

To be honest, it’s quite difficult to remember where is actually what I found. I remember initially, just literally searching the topic on the search engines online and all sorts of scary stories were coming up. You know, lots of different health websites, community forums, charities, all that kind of thing, you know. All relatively helpful but also, at the same time, quite contradicting like one thing necessarily say the same as another, so it was very hard to distinguish what was right and what was wrong. And I couldn’t really find much about people’s personal experiences as such and that’s really what I wanted to know. I almost wanted to find someone who was exactly the same situation as me, what happened to them, did they get better, but it was kind of like searching for a needle in a haystack I suppose. I didn’t really know what I was looking for, how to go about it. So I was coming up with all the wrong information that that really just frightened me to death.

And this was, you were diagnosed in two thousand and nine.

Yes, yeah.

Is that right? Obviously, it’s eleven now so it’s not that long ago.

No, not really. Even in that short space of time though, I think things have improved a hell of a lot or although whether it’s just simply the fact that I’m more knowledgeable now so I know what I’m looking for but I think things don’t seem as scary, I suppose, as such to me anymore online. I kind of know what things to look for and what to avoid because I know that they’re probably dramatising something or they’re drawing off just one particular experience. Whereas obviously, I understand now that there is a wide range of experience what people can expect to suffer with and treatments and things like that. So there’s always a wide range of information. it’s just finding the right information, I suppose.

So are you able to now to filter the information?

Yeah, I think I’m a bit more knowledgeable of what to look out for and again, I almost know rather than Googling of a wide subject, I’m more specific to what I what answers I’m looking for now. So I think it’s easier for me to find out the information I need.

I’m receiving several different treatments at the moment. Standard things such as anti-inflammatories. I am receiving steroid tablets daily, which are gradually being reduced. Things to counteract other medications, so stomach protectors.

So things like omeprazole, which I’m sure quite a few people have heard of. In terms of actually disease modifying drugs, I have weekly injections of methotrexate and the highest dose possible. I am now on a new biological drug called rituximab, which I’ve been on for two, no, sorry, about eighteen months now, which is an infusion I receive every six months in hospital. I also take anti-depressants to help with my mood, you know, with the emotional aspects of coming to terms with my condition. I’m trying to think. There’s such a long list of them. I have suffered with anaemia as part of my condition, so I’m now on things like iron tablets to try and build my haemoglobin levels back up and, obviously, then there’s the rest sort of pain medication I suppose to try and keep the pain under control. Which can be anything from, you know, over the counter medicines like paracetamol to sorts of stronger painkillers like Oramorph (morphine) and tramadol, which are usually taken on a regular basis for me just purely because I’d rather have it in my system so that pain doesn’t begin to affect me, as opposed to, you know, having to wait until pain arrives and then taking painkillers.

So my name is Kerrie. I’m twenty five years old. I was diagnosed with rheumatoid arthritis just over two years ago now, when I was twenty two. I suppose my symptoms all kind of came about very suddenly overnight almost. I suffered with what I thought was a flu-type virus for a little while. Made several visits to the doctors, had lots of different tests, that kind of thing.

And nothing ever really came back. It was just one of those things that, oh, been told to go away. It was a virus, you know, that I would get better eventually but I just tended to struggle on really. I was finding it difficult at work, at the time.

The initial symptoms really for me were swollen fingers. That was the first thing that I kind of noticed as such. It was almost as if I’d kind of broken my fingers but couldn’t remember doing it and again it kind of happened over night. I woke up one morning with swollen fingers, painful to move and this general flu like feeling, again which I thought was just a cold really. And then it slowly progressed into my wrists, the pain, again this stiffness, feeling of kind of not really being able to move in the morning and, you know, painkillers weren’t really helping. It was it was a weird sort of a pain to describe.

And things progressed into my joints. I started feeling very tired all the time. I was getting pain when I was walking and the soles of my feet, my hands were very stiff, wrists and also, like I say this general sort of flu like feeling. It didn’t go away.

Actually, I ended up in A&E a couple of times, like I say, with the swollen fingers. I was convinced that I’d damaged broken my fingers maybe and not realised. And again, you know, I was told to go away, that they couldn’t see anything. So I did eventually, go to my GP. I think I went three or four times before I was actually diagnosed. Again I was turned away, just saying that it was a virus, that there was nothing really that they could do but I don’t think anyone suspected arthritis or even questioned me along those lines, you know. There was no history of it in my family at all, so there was no real reason to believe that I would have that until, obviously, the blood test confirmed that.

You didn’t have any x-rays when you went to A&E?

I did have an x-ray I think, the second time I went, of my wrist.

But again, because, obviously, I was in the very initial stages, nothing showed up. I don’t really, I think they were either looking for a break or a fracture as opposed to what was actually there, which was the arthritis. So nothing showed up.

Okay then and so did you go to your GP after you went to A&E?

Yeah.

Oh, you went to A&E twice before you saw your GP?

Yeah.

And could you tell me what happened there?

When I went to the GP again, the first time I meant I described the symptoms to her that I was feeling very under the weather, couldn’t quite put my finger on what it was that was wrong with me. I was getting headaches, feeling so tired all the time, quite emotional, and just this general kind of aching in my body in all different types of joints. And she simply said that it was, it sounded like a virus and something that I had picked up. I’m just finished university and gone straight into a job, so she kind of thought that maybe the stress and emotional impact was just, you know, almost being run down, which I accepted, went away, struggled on but, as it didn’t get better, I went back again and that’s when I was referred for blood tests, and which showed up straight away that I had arthritis, rheumatoid arthritis.

So was it the GP that referred you or did you ask to be referred?

The GP referred me straight away to see a rheumatologist. And it all kind of happened very quickly from there.