My Doctor [GP’s name] sends me for DXA scans and you know I’m able to talk with doctors there you know and they send reports back to Doctor [GP’s name] and to Mr. [consultant]. You know so there’s no-one specifically but, you know I kind of trust Doctor [GP’s name], he’s really good. Really really good, and so I haven’t seen anyone specifically for a while.

Hello my name is David, and I’ve had chronic rheumatoid arthritis for the last twenty three years, you know? And I’m 25 years old. And over that time I’ve had you know many operations, you know taken many medications, and for the last two and a half to three years, I’ve also been diagnosed with osteoporosis, you know, which is known as a thinning of the bones and you know and that means also I can have an increased risk of fractures and breaks of the bones.

 

And I’m thinking that this has been brought on you know because of my longstanding chronic rheumatoid arthritis. You know which I’ve had since I was two, you know and I’ve got all my bones, joints, muscles all damaged because of that. And also I think, also I’ve been on steroids since I was two you know? And I mean I’m only on a fairly low dose at the moment of 7mg, but I mean I’ve been up to like 40, 50mg a day, I mean and I’ve had them every day since I was two. So I think you know a combination of the steroids and of the arthritis, of the chronic rheumatoid arthritis have resulted in you know all the joint you know damage, and has resulted in the osteoporosis.

I’m kind of against physiotherapy.

[Laughs], I don’t want to upset anybody. I’m against physiotherapy. Well I mean, don’t get me wrong, I have had it in the past, I’ve had loads when I was growing up, but because I mean I’m against it now because like it’s bone damage and I’m seeing the manner, you know, and I think you know some physio can put a strain on the bones, and don’t matter how much physio you do, you’re not going to cure the bone damage are you? You know, I mean I mean fair enough you might help the muscles and you might help you know other aspects but you won’t help the bones, you won’t suddenly fix the bones so that my hips solid, my ankle goes straight, will you? You’re not gonna do that, you know, this I’ve got a splint for my ankle which I sometimes wear but it’s really big and bulky and stuff, and my hip you know what I mean, I mean I’ve been told by my consultant you know to try and not do as, you know you know if you just try do as little as you can, you know so don’t try and put excess pressure on it, so it’s really physio would do that, it wouldn’t. It would cause it more problems and...

 

No, it’s not so much rest or do as little, but just be careful and don’t be you know, you know just don’t do anything you don’t need to do. Do a few, if you know what I mean? Just, I mean I mean I walk around the house, I mean that’s fine but I wouldn’t want, well you know walk up the road or anything like that, you know, I’ll just use the wheelchair. Do you know what I mean? So don’t, just don’t take any risks. You know so, and whilst the physio I mean, I know the exercises, so, I’ve done them loads in the past, so if I wanted to do it I could do them I mean, I’m going swimming so that’s good exercise.  

 

I did have physio after I broke my leg, you know, the immediate weeks after, but that was because I was on bed rest for 8 weeks and my leg was straight, and I needed to be able to bend my leg to sit in the wheelchair. But you know so my leg was stuck out straight, you know, and I couldn’t sit in the wheelchair while it was like that. And I wanted to get back to Uni, you know, that was the big drive. So but again I knew, I mean I went, you know I did go to the physio and I did follow their instructions but I knew all what I had to been, I’m not being funny about that but because I’ve had knee replacements it’s the same sort of thing, you know, so I knew, about you know the putting the towel under your leg, and doing it slowly and progressively you know? And so from that aspect you know I do know the exercises, so if I want to do them I don’t necessarily have to go for physio, I can just do them myself.

 

 

 

 

A little bit. But not, not a terrible amount no. Maybe at Christmas [laughs]. Yeah, I do have a bit and but you know within limits and there probably are medications that I shouldn’t be drinking with but you know I don’t go crazy and not every, you know probably once a week, maybe once every two weeks. I mean if I go out I don’t necessarily drink you know, I mean I might go out a lot, but I don’t necessarily drink so I can still drive. You know and obviously when I do drink I don’t drive, I get a taxi in that circumstance. But yeah I mean if I go out I mean just wanna have a good time really, and that doesn’t always involve alcohol and don’t smoke, and so yeah I mean, I do in moderation, I admit that but you know my Doctor does know that. 

I’ve started to go swimming a little bit which is good, you know and I find that really benefits me.

 

 

There’s a place up the road, it’s and it’s called [sport centre], so I’ve been going there when, as and when I can, you know I find, you know I find that really loosens me up. You know I can move a lot more freely in the pool. I mean ‘cos I haven’t been to hydrotherapy for years, you know, there isn’t really that facility open any more

 

 

No it’s like a public pool, You know it’s not warmed up, it’s just cold and you know but it’s, finding that the water benefits and have been able to get in. I mean because there was a time when like, I mean I don’t really like the water but I find it does benefit my joints and I felt really good after. And the day after I felt really loose.

 

Do they, do they have the special sessions at the pool?

 

No. I mean it’s just, like you mean at the public pool where I go? Not as far as I know. No, I just go on a, I mean when I go last time it was like a Sunday evening, so it’s fairly quiet. You know I mean, I mean I wouldn’t go now ‘cos, you know ‘cos all the, it’s the school holidays, I wouldn’t, I wouldn’t risk it, I’d go in the evening probably.

 

 

Yeah, I mean I’m not a good swimmer so I wouldn’t want loads of people in there anyway. And you know I mean you know that goes for any pool, I wouldn’t want it, even if I was going to the hospital you know?

 

I think you know, you know well from my point of view you know it’s not about leaflets and booklets, but you know a website or something. You know or you know some kind of information resource. I mean I don’t mind the leaflets but you know I don’t want it to be aimed at anybody else you know, you know it’s got to cater for my needs. You know and tell me about you know, you know what I can expect, and what you know I have to do and be careful with, what are the options available to me you know?

 

But I mean obviously it’s difficult because everyone is different and not I mean like me, I’ve got a replacement hip, but broke that hip, so it’s just you know it’s kind of different for everyone. But I mean I would like a website or you know just someone who can help me really, guide me, you know to talk, you know you know just to tell me more about it, ‘cos I am still very, I mean I don’t know loads about it, I mean I’m much more familiar with Rheumatoid Arthritis because I’ve had that for so long, you know but Osteoporosis I’ve never really got to grips with, all I know is that it’s an increased risk of fractures, you’ve got thinning of the bones, you know so, I mean I don’t know a huge amount so someone to either tell me, sit down and talk me, or a website, information page perhaps you know. May be on…

 

 

I think you know it’s still managing you know to cope with your life, despite having osteoporosis. You know obviously you have to be careful and you not take risks but you can still lead an active life. So I think it’s that sort of theme, that sort of way rather than you know saying this is what you’ve got, be very careful, don’t enjoy anything. You know you’ve got you know, it, it, you know you have to portray it you know in a positive light to, if you see what I mean? You know you can still drive, you can still go to work, it doesn’t have to limit you, if you see what I mean? You just have to be careful and then the medications available, you know, the one that I’m on, you know and alendronic acid, I mean I didn’t know about that until I was given it, you know calcium, you know there are different types of scans, a DXA scan, the BMA is it? BA and, B&A. So they’re a bit, so things like that you know, just a general. I mean I’ve got my, I get my stuff off Wikipedia. You know soit’s not exactly, I mean and I know everyone else hasn’t got access to the internet so, you know, so you could condense that, I mean there’s some big words on it, you could condense that down you know and…

 

Yeah, but it’s not to overload it either I mean, you mustn’t scare people off you know what I mean, it’s not to frighten people, but just to make people aware you know, especially if they’ve got like a replacement hip, ‘cos my you know, ‘cos my circumstances are increased because the hip can dislocate whereas if you have a normal hip they can crack but mine can actually dislocate and break, so that for me is different, from that point of view. So maybe you know concentrating a bit if you’ve had replacement surgery, and if you’ve got, you know, weak bones or osteoporosis, that could be good. And it’s really it’s really difficult to like pinpoint you know, but, you know ‘cos I don’t know what’s, you know I mean I don’t know the full picture so it’s difficult to say what I’d want, but definitely the basics you know but a definitely a positive kind of theme do you know what I mean? Just because you’ve got this doesn’t mean to say you can’t do that, if you see what I mean.

 

I mean obviously my family and friends have been good to me, family over the last 23 years I mean, or 25 years even, but 23 years since I’ve been ill, have been fantastic you know? And I can’t ask for anymore, you know but I think since I’ve become older since I’ve got more independence you know, I have tended you know and I’ve become a little bit more of a private person in a way, and I am different when I’m in my family to when I’m with my friends, I might open up more you know more you know with my friends now, and tell them stuff although you know they might not all understand exactly but they do know if things are happening or, I mean you know I might moan, I can, you know I can moan to them more, whereas my family I can’t really moan so much. I mean you can moan, but you know you feel bad about moaning or, you know? But with my friends you can say, “Ah I feel like crap today.” And do you know what I mean? But with my family I am quite, you know, you know I think I am more you know kind of private and reserved than what I have been in the past. I don’t know whether that’s my age or just how it is. I mean I will tell them things don’t get me wrong, you know, but I think I tend to you know open up more with my friends, you know?

 

And when I was at Uni like you know my personal tutor was fantastic. Helping me through my work and when I broke my leg as well he was really good. I know he was excellent, and the you know the people at work are good as well, you know managers, supervisors, you know kind of spending more really than that they’re do, if you’ve got any problems whatsoever you just need to ask and tell them you know, and they’ll help you in any way they can.

 

So I’ve got you know a lot of people I can turn to, and I think that is really important you need that. You can’t be alone. If they ask you if you’ve got loads of stuff bubbling up inside I think, you know, you need that, you need that emotional support ‘cos that’s just as important as the medical, you know?

I’ve been driving now for, ‘cos actually I passed my test just before I broke my leg, or hip fractured my hip. And I thought it was coincidence you know, but I’ve been driving for two and half years, three years. And yeah, it basically gives me so much independence you know. Without that I would either be stuck or be skint ‘cos I’d have to be paying that much in taxi fares you know? To get to town from here it’s£12. To get home it’s near on £25, so you’re talking that you know I want to go out everyday of this week, you’re talking £100 before I’ve spent any money on whatever, you know shopping or …

 

 

Went to town yesterday in my car you know, that would’ve ‘cost me £25 in taxis. Now I can see my friends. Before I had my car you know I didn’t really have that much of a social life but now I’ve got it you know, I mean I used to get taxis to and from university, it wasn’t until the latter part when I passed my test I could drive to and from Uni. But now since I’ve drove I can see anyone, you know go anywhere, it’s great you know, and I’ve come to Oxford.