Dan

Brief Outline: Dan was diagnosed as a baby. His arthritis got worse over time and damaged his joints and bones. He has a good consultant who he can talk to about anything. He has been more mobile since passing his driving test and volunteers at his hospital.

Background: Dan is trying to set up his own web-design business. He is white British.

More about me...

axDan was diagnosed with arthritis when he was three months old.  He was too young to remember his first symptoms but his mum said that he had warm and swollen joints. Dan said that his arthritis “slowly got worse” over time. He now experiences pain and swelling in every joint. He also has restricted movement in his joints. If he walks he feels a “sharp pain” in his knees. If he stands for too long his back will start aching and he will feel tired. The joints in his fingers and legs are “curling” and “slowly getting bent”. He may need to have surgery in the future to straighten them out again. Dan said that “while I can hold a pint, I’m fine but as soon as I can’t then I’ll go in for [an] operation”. Dan does not want to have his legs straightened because he can still walk. If he had the surgery he will have to wear leg braces for a year and will spent most of the time lying down. 

 

Until the age of sixteen Dan said he rarely left the house. People in his area were scared to be around him because of his disabilities. He found it hard growing up because he did not have many friends. When he was sixteen he joined a youth centre for disabled people. He enjoyed the centre and made new friends. He eventually became one of the centre’s volunteers. If Dan feels lonely he can speak to his consultant about it. Dan’s consultant tries to organise his appointments around the same time as other people his own age so he can meet others with the condition that know how he feels. Dan sometimes volunteers at the hospital and speaks to patients who have recently been diagnosed with arthritis. 

 

Dan has been in the media a number of times to raise awareness of arthritis. He has also been in the press because of kind donations (such as his scout group raising money to buy him an electric wheelchair). 

 

Dan takes steroid tablets, relifex anti-inflammatories tablets, etanercept injections, buprenorphine patches and pregablin for the pain, and Adcal to build up his bones.

 

Dan’s bones have been weakened by steroids. He used to have a scan every two months but now...

Basically, when I go for me scan they’ll call me in. You remove any metal objects and then they’ll lay you on the bed and a scanner will slowly go over your body and it’ll just check all of your joints and your bones. And then once it’s done, they just set you off and you and you can go and then if they find any issues, they’ll call you up to go back in and see your doctor.

 

How long does the scan take?

 

Fifteen, twenty minutes usually.

 

Oh, is that it?

 

Yeah. It doesn’t take very long.

 

And are you in machine or is it a hand held sort of thing?

 

You you’re laid on a bed with a scanner that moves over your body.

 

And do you have to wear one of these hospital gowns when it’s happening?

 

It depends what you’re wearing on the time on the day. If you’ve got anything plastic or metal then they’ll put you in a gown but if you’re just going just trousers and a t-shirt, you’re fine.

 

Does the metal buttons on your jeans, for instance, set it off?

 

No, I think it just shows up on the picture of what they see.

 

Okay. So you have these every year. Have you had these for quite a few years in a row?

 

Yeah, I have. I can’t remember how long I’ve been doing it now but it used to be more regular. It used to be every couple of month, then it were every six month but now that at the moment everything is stable, they’ve just said once a year unless I’ve got any issues.

 

What’s it like only going in once a year? Is that a good thing or a bad thing?

 

Well, it’s fine. It doesn’t take long so I don’t mind. They let me know when in advance so I know when to go in.

 

Who does the scan?

 

It’s an NHS hospital. I think it’s just a couple of nurses that do it.

 

Okay so there’s consultant with a scan or…

 

No. You only see a consultant if they find any problems.

 

Dan took buprenorphine to help with pain (though some doctors wouldn't recommend it) One day he...

If I ever forget to change one of me patches, that’s horrible. It’s the worst feeling ever forgetting to change a patch.

 

Why’s that?

 

Because it’s the same kind of medication what they give heroin addicts so it’s, if you forget to change it you get bad withdrawal symptoms so I’ll start itching all over, feeling hot and cold, headaches, unable to sleep and that’s just forgetting to change one day. So it’s horrible.

 

Wow. What kind of patches are these, sorry, what’s the name of it?

 

It’s buprenorphine. It’s like a morphine based.

 

You mentioned the withdrawals there. You didn’t mention pain. Is pain something which gradually comes back as opposed to maybe in one day does the patch leave you in a lot of pain?

 

No, if, well, really I don’t notice the pain if I’ve forgot to change the patch because the withdrawals are that bad, I just can’t think about anything to be honest and it’s sent me into hospital a couple of times where I’ve forgot to change it and I’ve had a bad reaction just from forgetting to change it for one day.

 

When you were hospitalised, what were you suffering from then?

 

At the same time, I’d just started a new medication because I’d reacted wrong, badly to that and because I’d forgot to change the patch, they both reacted badly together and it sent me kind of crazy and my friends started getting worried about me so mum took me into hospital and I ended up going three days without sleep. So they had to give me something to just knock me out of it.

 

Okay. Do you mind just saying what you meant when you say you went a bit crazy?

 

Well, I started I actually started hallucinating because I’d had an allergic reaction at the same time as withdrawal symptoms so I’d actually gone over to my friend’s house and I just asked her if I were a butterfly and it kind of freaked her out so that’s why they says, “We’d better get you to hospital.” 

 

Do you remember much about what happened?

 

Yeah, I remember it all. It were, I’d started twitching really badly and the doctor at A and E could see that something were happening and that and at first they said, “Oh, you’ve got to try and get some sleep.” “Oh, I can’t. I’ve been trying for three days.” So then they gave me some diazepam to knock me out and then after I’d actually got some sleep, the patches eventually started kicking in and I started feeling better after a couple of days.

 

Dan can have operations to have his legs and hands straightened out. If he has his hands...

You said that you’ve got this bending of the joints being stiff. Is anything being done about that to help you?

 

No, not yet. They wanted to have a look at my fingers because they’re kind of like curling round into like a fist and so what they wanted to move one of me tendons from the inside of my joint to the outside so kind of like pull it straighter but then they were kind of worried that if they did it I wouldn’t be able to bend it after. So they says they left it to me really so as long as I’m happy, they’re just leaving it for now.

 

So I take it you’ve decided not to have this done.

 

Yeah, I’ve not decided, well, the way I worded it to them, while I can hold a pint, I’m fine but as soon as I can’t then I’ll go in for operation. And the same with, as soon as I can’t walk, I’ll go in and have operations to straighten me legs out.

 

Okay and you mentioned your hip so I know repeat lots of stuff but was that a similar problem?

 

Yeah, it restricted movement so they just wanted to try cutting me tendon just to see if that helped movement but it only worked for a couple of month and then it went back to how it was originally.

 

So you’ve not, have you lost anything because of the surgery?

 

Yeah, I lost a bit of movement and now I can’t ride a bike at all or anything now.

 

Okay. Thank you. What about your other side though? Is that going to be an issue?

 

Well, at the moment, what they’ve said is my hips are bending forward because my knees are bending backwards so my body is reacting to keep balance. What they’ve said they will do, what they’ll want to do eventually is they want me to have framework going up both sides, starting at my ankles all the way up to my ribs but I’ll be laid down on me back in this for a year and then obviously, I’ll have to learn to walk again. So I’ve said, while ever I can walk I just I’m not going through that because it’s only past few years that I’ve been going out recently.

 

Okay. I’ve not heard of that before. And I mean this is because my background isn’t in medicine to say as such, I was wondering then perhaps if you could describe what that really was. You say a frame, are you in a metal splint? What does that mean?

 

Yeah, more like a, yeah, a metal splint where once a day I’ll use an allen key to just tighten one nut at once and that’ll slowly straighten out each of my joints but you’ve got to be in it for at least a year and then because obviously, I’ll have been on me back for a year you have to learn to walk and go through all physio after as well.

 

So spend an entire year laid on your back.

 

Yeah.

 

Okay what are your thoughts about that?

 

Well, because up until I was like sixteen I never went out. I used to stay in house and then I started going out and meeting people and actually leaving for a bit and I don’t want to end up back in house again. So while ever I can walk, I’m just going to leave it.

 

Dan’s life transformed when he got a car through the Motability scheme. He spent more time out of...

What do you do for fun, recreation?

 

I usually, now that I’ve got my car I love going out for a drive and I can spend some, a right load of money just on diesel just going out for a drive. Because I’ve spent most of me life in house, now that I’ve got a car I can go anywhere, do what I want. I like to go out to do a bit of karaoke with me friends and that. So that’s always a good laugh as well and I know that if I do go out usually, the following day I can’t do anything because I’ve tired myself out but I’ve had a good time so I don’t mind.

 

What’s it like having a car then? What’s it feel like?

 

It’s opened my life up a lot. It’s changed so much since I’ve got a car now. I’m very rarely at home now. I’m always out somewhere. I can go and meet new people. I can actually go out to my friends instead of having to wait for people to come to me because a lot of my friends are in [town], which is, it’s not in walking distance really so I can always just go and drive to my friends instead.

 

Dan didn’t play with the other kids in his street when he was younger. He said they were scared...

Can I ask, if it’s not too sensitive, why didn’t you leave the house?

 

Well, when I were younger a lot of people in the area were scared to be around me because they were worried that something would happen and they wouldn’t know what to do so I were never invited to birthday parties or anything like that. So I used to spend all me time in the house.

 

Is that difficult for you to talk about? I can move on if you want to.

 

No, I can talk about anything really.

 

Okay. Just wondering what that what that felt like?

 

Well, as a kid it were very hard. You’re just lacking friends and that. And then it I found it hard for me little sister she because she were very protective over me then and it started worrying her a bit but then I started, when I turned sixteen I found a youth centre for disabled kids and that’s when I started going out more and doing more and it gave me more confidence.

 

Was it hard coming to the youth centre the first time?

 

Yeah, because I didn’t know anyone because it weren’t in the area. It were only like five minutes drive but because I didn’t know anyone it were something different but then I enjoyed it that much, I eventually started going on training and I became one of the volunteers there as well.

 

I made plenty of friends there and that and every, it were specially designed to bring abled bodied and disabled people together so it were a mixture of everyone really and it just gave me more confidence.

 

Was there a difference in how you related to the able bodied person to disabled bodied people?

 

No, but I had started feeling more hopeful because it were, when I started getting older it made the younger kids used to seeing people in wheelchairs so I thought that’s kind of helping others.