David - Interview 37

Age at interview: 25

Age at diagnosis: 23

Brief Outline: David was diagnosed with juvenile arthritis (re-diagnosed as rheumatoid arthritis) at the age of two and on 2006, following a hip fracture, he was diagnosed with osteoporosis. He thinks that osteoporosis is the result of his arthritis and the long-term use of steroids. On alendronic acid once weekly and calcium two tablets a day.

Background: David lives at home with his parents and siblings. He recently finished university and now works full-time as a Customer Relations Administrator. He loves is independence that he says are facilitated by his car and wheelchair.

More about me...

David has lived with arthritis most of his life. He was diagnosed when he was two years old and was put on steroids. Twenty-three years later he is still on steroids - a fact he finds distressing - but as he explains - it is because no other medication keeps his arthritis under control. There is no history of juvenile arthritis in the family but both grandparents developed rheumatoid arthritis in old age. And his grandmother developed osteoporosis at the age of seventy.

 

David was diagnosed with osteoporosis following a spontaneous hip fracture in 2006. He knows that his osteoporosis was brought on by his chronic illness and the long-term use of steroids. David says that because he developed arthritis at such a young age his growth, bones and muscles have all been affected by arthritis. David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, legs straightening and spinal fusion. His consultants have told him that he would need more vertebrae fusions in the future.

 

David was put on alendronic acid, once weekly and two tablets of calcium a day. He also has a DXA scan every six months. The scan results have indicated that his s bone density has increased by 17 per cent. Whilst he feels encourage by such results he is disappointed by the lack of information available for younger adults. He finds that the bulk of the information available is aimed to older people, reinforcing the misperception of osteoporosis as an ‘old age’ illness.

 

During his childhood and teen years he was in and out of hospital on a regular basis and missed a great deal of schooling. But despite this, David finished his GCSE's, did his A-levels and obtained a university degree. He says that disabled people find it particularly hard to find employment and therefore, he understood that he needed all his qualifications in order to improve his chances of finding a good job.

 

David is now working full-time for a local government as a Customer Relations Administrator. It is tiring but says that he loves work and wouldn’t like to be ‘stuck at home’ with nothing to do. His employer has provided him with all he needs including a ten hour support worker available through a government scheme' Access to Work. 

 

David makes the point that he is in charge of how he chooses to live his life. He manages his own medication, hospital appointments and because his home is fitted with special devices, he is able to do most things for himself, like having a shower, opening doors, etc. However, he is restricted to how much he can lift and therefore can't do certain things like cooking.

 

His family has always been there for him providing the practical and emotional support when needed but nowadays he tends to talk more to his friends about how he feels. He says it is just because he is older and also lucky to have a good bunch of friends. University and work have provided David with good friends and a busy social life.

 

For David his car and wheelchair are absolutely essential in enabling him to live his live as an independent young man. He paid for the wheelchair himself because the one offered by the local social services was for indoor use only. Learning to drive and getting a car has made a positive and significant impact to his life. David says that it would be really difficult to go to work by public transport and prohibitively expensive by taxi.   

David who has had arthritis most of his life and was diagnosed with osteoporosis when he was 23,...

I have like a bone density scan about every six months, you know the DXA scan, I have that every six months, and from when it was measured before I broke my hip it’s gone up by like you know something, I think they gave us 17%, you know my bone strength, which doesn’t seem that much I know but obviously you know it’s a difference, and I think that is a combination of you know the drugs, the Alendronic acid and the calcium. You know so, you know so hopefully that will continue to go up you know, whilst it can but I don’t know if it’ll get much higher than that. But as long as you can reduce the risk of fractures ‘cos obviously I mean I was when I broke my leg, I had to be on, I mean I couldn’t get up I was on total bed rest for eight weeks. So, I mean I couldn’t have that keep on happening. You know it’d be ridiculous. I mean it when I was, when I was at Uni, so it took eight weeks out of my Uni you know course. Which meant that everything was pushed back, you know so I can’t be having that.

 

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.

David had plenty of physiotherapy as a child but he chooses not to have any now because he...

I’m kind of against physiotherapy.

 

Tell me why?

 

[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.

 

 

 

 

David drinks occasionally and in moderation.

Do you drink alcohol? How much do you drink?

 

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. 

Swimming benefits David's joints and the day after a swim they feel loose.

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

 

Where do you go to?

 

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

 

So how often do you go to, is this a private pool or, or public?

 

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.

 

You’re a bit nervous about it?

 

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?

David is grateful he has a lot of people he can turn to for emotional support.

Who has provided you with emotional support when you need it?

 

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?

Driving a car gives David independence and enables him to have an active social life.

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.

 

To, I wouldn’t have been able to get there you know without that, or if you’d have paid for a train I would have got on the train, do you know what I mean? It’s ridiculous, you know it would have been ridiculous, I needed to pass the test and I think when I was getting, as it was going through the process of getting a car I didn’t realise how important it would be. But now I can’t think of doing without it do you know what I mean? Like when I had the crash you know I was out for two weeks, I didn’t know what to do with myself. I got on the train to and from work, it was an absolute nightmare, you know? But I still managed to get there anyway, but yeah I love driving, you know? And that, I mean that and the wheelchair are the two most positive things I can have you know? It means I can be able to be independent and still maintain a life and, so yeah. Couldn’t do without ‘em.

Positive information for younger people is needed, which explains that if people are careful they...

What type of information do you think young people with osteoporosis would need?

 

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…

 

Okay, but what themes do you think would be relevant for young people with osteoporosis, or younger people?

 

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, do you, if you see what I mean.

David has always known that steroids and rheumatoid arthritis were damaging his bones. Steroids...

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.