The main thing that I suffer with on a daily basis is fatigue which is a thing that I think people really find difficult to understand because if I tell someone I’m in pain they kind of accept it but if I tell someone I’m tired they just think, ‘I’m what? I’m tired too. But when somebody else says they’re tired it’s almost certainly not what I’m feeling because I have a massive lack of energy sometimes to the point where I probably don’t have dinner at least twice a week because I just don’t have the energy to even put something in the oven let alone actually cook something from scratch. And if I’m on placement or working all day then I just, I come home and I can’t do anything because I’ve just got no energy left at all. So that’s probably the main symptom that I suffer with and that’s less easy to treat as well. When I get a flare up of the disease then I get more poorly so more pain, more tiredness and lack of appetite, weight loss. The best way I can describe it is imagine that you’ve got flu and because you’ve got flu your immune system is trying to fight off the virus so it’s, because your immune system’s overactive it’s making you feel tired, you haven’t got any appetite, you just feel achy all over and that’s what my immune system’s like all the time because my immune system’s overactive in the disease and that’s the best way I can describe it I think.

So what kind of things do the University do in relation to your arthritis to help or support you?

I got disabled student’s allowance one year.

Can I ask how much that is? Is that personal?

No this is the thing. It’s, they don’t give you a lump sum, they give you things

I see OK

This is what I didn’t realise at the time and I did go along with it because I thought it might, might be useful really. I got that chair out of it that’s worth about £600 and it’s basically, it has loads of different gadgets and it’s meant to be really supportive for your back so obviously if I’m sat working for a long period of time then it can get quite bad on my neck and my back and that chair does help. But to be honest I would have found money more useful and I know that sounds really shallow but the little things that, like I, up until about a month ago when it completely broke down I had a car and I’m struggling to manage without a car because, for example food shopping, I can’t do that – I have to buy things on a daily basis pretty much because I can’t carry lots of shopping.

With a car I was able to do that. Getting to placement, walking long distances is a bit of a problem for me so even walking to the hospital where I’m on placement at the moment, it’s only up the road but it will take me about forty five minutes and if I did that every day there and back I’d be exhausted so just being able to drive takes that away and also means I can have that extra time in bed as well which, as I was saying, with my energy levels every little bit of extra minutes sleep really helps. So really I was hoping that I’d get something like that of it that could help me run a car for example or that kind of thing but I did get some useful things out of it. I think you have to apply for it on a, you have to keep reapplying for it and I just couldn’t really bothered because I didn’t really find it that worthwhile.

So what kind of things do the University do in relation to your arthritis to help or support you?

I got disabled student’s allowance one year.

Can I ask how much that is? Is that personal?

No this is the thing. It’s, they don’t give you a lump sum, they give you things
I see OK

nd this is what I didn’t realise at the time and I did go along with it because I thought it might, might be useful really. I got that chair out of it that’s worth about £600 and it’s basically, it has loads of different gadgets and it’s meant to be really supportive for your back so obviously if I’m sat working for a long period of time then it can get quite bad on my neck and my back and that chair does help. But to be honest I would have found money more useful and I know that sounds really shallow but the little things that, like I, up until about a month ago when it completely broke down I had a car and I’m struggling to manage without a car because, for example food shopping, I can’t do that – I have to buy things on a daily basis pretty much because I can’t carry lots of shopping.
With a car I was able to do that. Getting to placement, walking long distances is a bit of a problem for me so even walking to the hospital where I’m on placement at the moment, it’s only up the road but it will take me about forty five minutes and if I did that every day there and back I’d be exhausted so just being able to drive takes that away and also means I can have that extra time in bed as well which, as I was saying, with my energy levels every little bit of extra minutes sleep really helps. So really I was hoping that I’d get something like that of it that could help me run a car for example or that kind of thing but I did, I did get some useful things out of it. I think you have to apply for it on a, you have to keep reapplying for it and I just couldn’t really bothered because I didn’t really find it that worthwhile.

So I’ll have to go into hospital first thing in the morning, they clerk you in which basically means they fill out a load of forms and just check that you’re well enough to have the, have the medication because it; the way it works is it kills off certain types of your white blood cells which fight infection so for a short period of time after you have the infusion your immune system’s quite low. So you need to be well enough to be able to cope with that. It’s actually a drug they give to certain types of cancer patients as well so that’s sort of the, the, the strength of the, of the medication. Then they put what’s called a cannula into your vein so, which is small plastic tube, they use a needle to put it in but the needle doesn’t stay in your hand or anything so it doesn’t really hurt.

The plastic tube stays in your vein and they attach that to the drip so you have a bag with the medication in and a tube that then attaches to the tube in your hand, and they start it and it just goes in slowly for six hours something like that, five/six hours. They start it off slowly and then gradually increase the pace so the first half of the infusion goes really slowly and then it and then it gets quicker because some people have reactions to it, allergic reactions or they spike a bit of a temperature or something like that so if they start it off slowly they can monitor you and then if you’re doing alright then they can speed it up. I’ve never really had any problems so far. And then they, you stay for half an hour after it’s done just to check you’re OK and then you can go home. So it’s just boring [laughs] but you’re in an out on a day so and you don’t have to think about it again for six months.

Yeah I bring a lot of magazines and I always try and take someone with me but always a different person every time because I appreciate how boring it is and because they give you; one of the drugs they give you before they give you the infusion is Piriton [chlorphenamine maleate] which is like an anti-allergy thing that you can take for hay fever and that kind of thing just to kind of try and prevent any allergic reaction to it. It makes you really drowsy so a lot of the time I fall asleep and so whatever person has come with me to, to have the, have the infusion ends up sat there just by themselves for a few hours so I do try and rotate my friends and family round.

When it comes down to treatment choices are you, are you actually given choices, are you kind of told what you should be on?

I’m more told what I should be on I think. I don’t really mind that though because I trust my doctors in general so if they have a suggestion for something that I could try then I would generally go along with that. It’s more the other way round probably when I want to stay on a drug and they say, "No you can’t," that that’s the only time I’ve really sort of had problems. For example that the non-steroidal anti-inflammatory drug that was causing my stomach problems I actually at the time didn’t want to come off it because as far as I was concerned a risk of stomach perforation versus knowing I’ll get definitely get symptoms, I’d rather risk, have, take the risk of the stomach problem than know for a fact that I’m definitely going to get pain and therefore not be able to live a normal life. And that might be, sound extreme to some people because why would you want to risk a hole in your stomach but that’s kind of the way I looked at it but the doctor then in the end actually gave me no choice and said, "No we can’t, we can’t justify you being on this," so they obviously weren’t prescribing it anymore. But never the other way round, it’s never, I’ve never had, had to, I’ve never, there’s never been anything that I’ve wanted to be on that I haven’t been allowed to be on or anything like that.

And have you ever been given choices not necessarily in terms of the type of medication but how you take them?

Again not really but I don’t think there’s ever, that’s ever really been an issue because I know with methotrexate you can have it, you can have an injection instead of orally and I think supposedly if you, if you get nausea and vomiting from taking it orally then injections are meant to be better for that. But I’ve never really had that side effect so I’ve never really even needed to be offered the injection and it is a bit of a pain having to take medication every day but I’m used to doing it so actually probably oral medication’s fine for me because it’s just a routine now.

Didn’t really happen for me because although I was diagnosed as a child I saw a paediatrician I think twice and then I saw an adult rheumatologist and I’ve always been treated by an adult rheumatologist so I never really had a transition but the only thing I really feel I missed out on is that I’ve noticed that children with JIA seem to have a lot more care basically so if they’re poorly they’ll get hospital, they’ll get admitted to hospital and although it might seem a silly thing to say that I want to be admitted to hospital, when I’m really poorly and I can’t look after myself I feel safe in a hospital because I feel like people can at least try and do something for me and I’m not trying to look after myself and all that kind of thing but as an adult with RA that rarely, if ever, now happens where you’re actually hospitalised because of the disease itself. Obviously complications say with my stomach and everything I’d be in hospital but never directly because of the disease and I think as a child you kind of get that much more hands on care I think, that’s the impression I got anyway. I never really had that but I never, I never went through a transition because I never was treated by a paediatrician so I don’t know what a transition through adolescence would be like because it never happened to me so.

I think it’s just the arthritis that caused it, joint erosion but actually having read about avascular necrosis not long after I’d had my hip replacement it did make me think maybe actually it was caused by that because, OK but no-one ever, nobody had ever mentioned that to me before so I presume that it was just caused by, damaged by the disease itself. I was twenty when I had my hip replaced and it was about a year before then. Because I’m in pain every day I actually am not normally the first person to notice when I get pain. So it was actually somebody else at work that pointed out that I was limping and I hadn’t even noticed before. But then I realised, oh I think my hip’s hurting but I just assumed it was normal arthritis pain and then next time I saw my rheumatologist it was actually, I just mentioned it pretty much as I was leaving. It was a sort of an afterthought like, “Oh by the way my hip’s been hurting.”

So he did a quick examination and this was before I was a medical student so I didn’t realise what he was doing at the time but he was testing the range of movement and he obviously realised that it was very reduced because he sent me for an x-ray straight away. It was obvious that he was worried and he called me later that day and said, “It’s not good news.” He referred me to a hip specialist and when I saw the hip specialist he told me that before he met me having just seen my x-ray he didn’t expect me to be able to walk into that room. He thought I’d be in a wheelchair because the amount of damage that was done to that joint, there was no cartilage left which is the, the kind of cushiony bit between your joint that helps it to move but not only that because it was bone rubbing on bone that my bone had actually started to erode. So obviously that’s not, it doesn’t go well with a moving joint. When I had the operation I don’t actually remember this, I must have been really drugged up but I was told afterwards that the registrar had come to see me and said that it was one of the worst hips he’d ever seen so

Wow

Yeah I would have liked to have been the worst, I’m quite competitive. One of the worst you know so I had that done when I was twenty which is four years ago now and so far so good.

Has there been improvement in your movement?

In my hip?

Yeah

Oh completely, it completely transformed my life. I mean by the time, I was told I needed a hip replacement in the April of that year and there’s a twelve week waiting list but the date I was given my operation coincided with my first day of uni so I decided not to have it done because I didn’t want to miss, I would have had to miss six weeks of Uni which would have included Fresher’s Week, all the settling in, everything that’s really important about going to uni. I wouldn’t have wanted to start when everybody else already knew other and made friends so I decided not to have it done so it got done at Christmas instead and that first term at uni I might as well not have been there because I was sleeping fifteen hours a day, I was in so much pain, I was so drugged up on tramadol which is the painkiller down from morphine so it’s the one below.

I was drugged up on that which spaces you out, makes you sick, like it justI just wasn’t myself at all. Couldn’t really go out because of the pain, had to use crutches a lot. If I did go out I was just exhausted. I just wasn’t myself and then after I came back after Christmas or eight weeks after the operation everyone said I was like a new person because I was back to my old self again but obviously the people at Uni had never seen my old self before then. But I was back to my

I think it’s very confusing because I didn’t really know what I had. I’ve always, it’s always been referred to as rheumatoid arthritis, that’s what I have, that’s what I’m treated for, in all my hospital notes that’s what I’m told. If anyone asks me if I have any medical problems I say I’ve got rheumatoid arthritis. But in my initial clinic letter on my diagnosis it is written as polyarticular rheumatoid factor positive JIA and since doing a research project at Uni actually I’ve found that the official terminology is any inflammatory arthritis diagnosed before the age of sixteen that lasts more than six weeks is officially juvenile idiopathic arthritis so I think there is a lot of confusion and actually I think it probably be more useful if everything’s stuck to. But then I don’t think you’d find an adult who wants to be, their disease to be referred to as juvenile because it makes it sound like something that just children get.

I remember about my shoulder and I remember how it would be painful one day and not the next and I remember when it was really bad I’d have, I couldn’t get, I couldn’t lift my arm up on its own so I’d have to use my other arm to lift it up for me and that’s the only way I could do it. Even then it was painful but I physically couldn’t do it by itself so at school I remember once I was trying to put my jumper on or take it off or something and my friend laughed at me because I had to do this and obviously I didn’t have a diagnosis or any idea what was going on at the time so fair enough really but I remember that. And I remember the fact that because one day I’d be fine and the next day it would be painful, my sports teacher thought I was just trying to get out of sports so I’d be playing netball I think one day and my shoulder started to really hurt. So I said to the teacher, "Would you mind if I just sit out for five minutes?" I wasn’t even asking to stop completely, I just said I just need because my arm’s really hurting and she told me I couldn’t and that, that she thought I was just trying to get out of it basically and I had to carry on playing and I actually loved sport at school so that was a shame.

Just more the feelings about it like the frustration that we’re talking about earlier. Just, what it’s like to be in pain all day, every day because; I’ve even once, I’ve even once sat in a, in a consultation as a medical student where a patient, he didn’t have arthritis but he had some kind of condition where he was in pain and he was telling the GP that he was, that he was really struggling with the pain and the GP pretty much word for word said, "You’re just going to have to get on with it because you’ve got to deal with it." And I just think it just shows that you can’t understand what it’s like to have to put up with that twenty four seven. No you’re going to have put up with that twenty four seven for the rest of your life.

Unless you’ve actually been in that situation you can’t, you can’t possibly. I think the only people that I’ve ever spoken to that they say something about the disease and I go, ‘That’s exactly it, explain it better than I could,’ are the people that have also got RA. They’re the only people that just, it just makes sense to me what they’re saying and I think you can’t, you can’t, no doctor and you can’t learn that out of a text book, you can’t, you can’t learn that from a leaflet saying no parent or no, no doctor is ever going to understand those things properly. They can understand how drugs work, they can understand roughly how the disease works but they can’t understand what it’s like to actually have that disease.

The main thing that I suffer with on a daily basis is fatigue which is a thing that I think people really find difficult to understand because if I tell someone I’m in pain they kind of accept it but if I tell someone I’m tired they just think, ‘I’m what? I’m tired too. But when somebody else says they’re tired it’s almost certainly not what I’m feeling because I have a massive lack of energy sometimes to the point where I probably don’t have dinner at least twice a week because I just don’t have the energy to even put something in the oven let alone actually cook something from scratch. And if I’m on placement or working all day then I just, I come home and I can’t do anything because I’ve just got no energy left at all. So that’s probably the main symptom that I suffer with and that’s less easy to treat as well. When I get a flare up of the disease then I get more poorly so more pain, more tiredness and lack of appetite, weight loss. The best way I can describe it is imagine that you’ve got flu and because you’ve got flu your immune system is trying to fight off the virus so it’s, because your immune system’s overactive it’s making you feel tired, you haven’t got any appetite, you just feel achy all over and that’s what my immune system’s like all the time because my immune system’s overactive in the disease and that’s the best way I can describe it I think.