Interview 14

Age at interview: 43

Age at diagnosis: 24

Brief Outline:

Diagnosed '84 as sore fingers; main symptoms age 30+ & began DMARDs. Now Methotrexate 15mg/wk & daily folic acid, Meloxicam 15mg, Prednisolone 2.5mg, 6 Co-codamol & Lansoprazole. Operations; toe '90; wrist & finger fusions; 2 ankle replacements '01/03.

Background:

Freelance human resources consultant (part time), married with no children. Has had ankle surgery via private healthcare but other operations via NHS. Family history of RA.

Methotrexate caused uncomfortable mouth ulcers until she started taking folic acid as well.

The methitri, methotrexate which I take, I started to realise, it was about 12 months after I started taking them, but it was really when they increased the dosage I started to suffer from mouth ulcers and I tended to get a mouth ulcer I was having one at least once a week. Not little but quite big ones, quite sore ones in fact there was a period of time I had them down my throat, they were quite, they were very uncomfortable and very sore but I waited til I went to see the specialist to say, look I am, because they say to report mouth ulcers as one of the possible side effects, and I said I was experiencing them and they were very uncomfortable and they explained that the methotrexate apparently destroys certain goodness in the system that which causes the mouth ulcers so they increased my folic acid from one day a week, to one every day of the week so, and since then, touch wood, I haven't had any mouth ulcers so they obviously it was that. But it was I didn't mind them once a month but when they were coming every week it made things very uncomfortable.

Steroids made her gain weight.

I mean as I said I hate being puffy, I hate being like a chipmunk and putting the weight on because of it and also because you are not that mobile, you know, you put weight on, you don't need to eat much just sit you know, take your steroids, sit and watch the television and you put weight on and I do hear about, read about people who have, who have taken steroids on a long term basis their organs being affected by it and yes, I'm worried and if I can come off them I'll come off them. The doctors don't seem to bothered about me coming off them so it's not as though it's going to cause me much distress and I'm very, I'm down to a very low dosage now so I've really only got one more step and I'll be off them so.

Has monthly blood monitoring, but it is difficult to get a sample. She likes to know and...

Blood tests monitoring, I have once a month for the methotrexate. Difficulty is now, that's why the doctor's coming today is it's not easy to get blood from me now, because I've been giving it so many times. So it's, I can't, the nurse, the district nurse can't do it so I have to have one of the doc, practice doctors, and they, they're having a problem now. Unfortunately was it last month, I had about, I went for a blood test six times until they managed to get a sufficient sample, which did, has made me a little bit phobic of needles now. I never was but that and that's not going to get any better because I've really only got one good sort of vein and they are lucky if they can find it. That's one of the worse side effects, I would say of it all now, I hate needles.

And what, what, did you understand what they're monitoring for?

[cough] Yeah 'cos I asked them again. I'm always as I say I'm never frightened to ask. I have a booklet where I record my results, which they give me because I take that to my consultant and I'm always, I always want to know why, well you know, this red blood counts down does that matter and they'll show you the, the range of acceptability and 'well that's not, we're not worried about that' or if my inflammation is, is high and  ESR they measure me I know, I think well that makes sense because I have been feeling very stiff lately. So I do, I understand my results and they always tell me about them so and I keep that and so I can discuss it with the doctor when I see him. 

Had her ankle operation under spinal block because she doesn't like general anaesthetics nor too...

I don't, I don't like general anaesthetics, general anaesthetics! and a few years ago I had a one operation because you probably hear, I cough a lot so, I'm, I'm asthmatic. I had one of my operations done under a spinal, a spinal block, being awake. So I managed to persuade the anaesthetists for all these operations to let me be awake so I had a epidural and a spinal block. So they make me a little bit sleepy.

So that was the only thing I was worried about in case he wouldn't do it because going back to my, my arm, my line problem, that's the problem I have because if they couldn't get a line in to me to do the epidural and that. They wanted to put me to sleep and that was what I started to panic about more than anything. But I have no worries otherwise. I mean, I'm quite  I just like to go in there and get it done. So I don't like fuss, I tend to send my husband away as soon as I get there because I want to be, I want to treat it as like it's something that has to be done and that's the way I do it. 

But that's the way I have to, that's the way I can handle it. If anyone starts being sympathetic and feels sorry for me than I'll just fall apart and get all upset. No I didn't mind too, I was more concerned about the after period, knowing that last time I was slightly depressed during the, the time I was at home. I was worried that, that would happen again but it's been very different from last time so I don't know why, I have no idea why but it's it's been easier this time. I've been more mobile as well, earlier than last time.

Dislocated her ankle and consequently had pinning and replacement surgery in that and her other...

Then I had an ankle replacement about 12 months ago. Unfortunately my, my ankle became dislocated little to my knowledge, I didn't know that was the case, because probably as many, many of arthritic people will tell you, you're in pain all the time so you just think, 'oh this is just another pain' so I didn't realise I was walking around on a dislocated ankle. And after  an x-ray, it was found that I had a dislocated ankle so they wanted to try and not fuse the leg because that would have given me like a straight leg, so they tried pinning it first. 

So I had, they pinned it and that was in the May and  they straightened it up but it didn't hold, so in the November, I had it replaced, and that was about, oh, just about 18 months ago. And then I've just had my left ankle replaced, because it was so good, the operation was such a success, but unfortunately I, I did have to go private, for the operations on both my ankles,  because of the waiting time to have the first operation done. If I hadn't had the first operation done there was a possibly that I could, my leg would have broken, so and it was an 18 month waiting list at  [name of hospital]  so it was necessary for me to, to go private  for all, both all my ankle replacement therapy basically, all the other bits I had all done on the national health but.

Oh no, I mean, there, I mean, the place I went to they're very quick. You go in on the day you have the operation. So I arrive at 10, and I was ready and in the operating theatre at 12, and I was out of the operating theatre by 2'30 so it's very quick and then that was on a Monday and I was discharged on the Friday. They just, they'll let you go as soon as they know that you can look after yourself at home and they get you up straight away, on the second day after you've had the operation. So no, you're not and also they're very aware of the fact that you have arthritis and being in bed doesn't do you any good if you stiffen up. So no, I wasn't in there long at all. 

And when you came home you've been able to, well get around a bit?

The first two weeks, they, the, I think this is what they say 'cos you're not in hospital long they make you rest, you have to rest so you're in bed really for 2 weeks. So the ankle can heal and take, and that was probably hard because that's when I had to get neighbours to let people in 'cos I couldn't literally get off the seat without somebody taking me off the seat and couldn't go to the bathroom, couldn't do anything. Now that two weeks is over, I am free. I'm allowed to hop  around part of the day and then make sure I have it up the rest of the day.

Changed to an automatic car and describes what she looks for when choosing a new car to make sure...

My hands are obviously one of my worst affected areas and it's just the constant jarring of changing gears and that, that's really what it is. At least with the automatic, my hands are both on the steering wheel because they're not strong, my hands, also I need two hands always on the steering wheel to get the maximum grip.  

That was really all it was for the automatic makes it and I drive to, a long distance when I usually work and it will be up to forty to eighty miles so constant jarring was, did, did no good for my joints at all. Again that was another thing I've really hung on, I hung on to ordinary manual car as long as I could because I did not want an automatic but it got to a point where my husband persuaded me I had to have it so'

Are there any other things when you're choosing a car that you try and look for?

When I, when I'm looking 

To choose a..?

Yep, I have to go around the car to make sure I can undo the handles, the boot. I spend ages kinda looking at can I, because sometimes the, sometimes handles are, are in a way where I can't turn my hand to actually, they, they're just a little bit clipping and I, I can't bend my fingers that well so I can't undo the boot so the handles have to be a particular way in a boot.  The key, an important thing, I had a lovely gentleman, I, he was recommended to me by the occupational therapist, a local man, who came round one day and it, he obviously does it in his own time, to find out if there's he can make which will help things for you, and I can't turn the car keys.  

So he made this little wooden contraption for me which I loop over my car key and gives me leverage to turn the key, which is probably my most precious item because I couldn't undo a car. I couldn't start the car without it and all he did, he made it for me so I have to make sure I can do the keys and that this thing will fit will fit through my little contraption and that I can do the knobs and things and I'm comfortable that the seat positions are comfortable. So I do spend quite a lot of time when I'm selecting a car. 

So ideally when I, you know, I go out and think, 'oh I really like this car' and I get there and I can't, I can't cope with the, the handles are ridiculous. I can't open the doors. I can't open the boot. I can't reach the boot door when it's open. You know, some of these three, they go right up high and I can't reach them because I can't stretch out my arms out fully to bring it down, so it takes a long while for me to choose a car.  

Explains why she became acutely aware of her deformed hands.

I would say I have got deformities of the feet but you cover your feet up with shoes and your clothes, so people don't tend see them and in my ankles I won't wear skirts anymore. I will not wear dresses or skirts 'cos my ankles are very swollen, they're thick they've, I've got scars on them so I wear trousers, so it's not a problem with that.  

But my hands, your hands you can't hide, hands are always very focal and I tend to use my hands quite a lot when I'm talking, when I'm training. And I've become very aware of they're deformity and, and so much so, I won't wear rings. I have lots of beautiful rings. I won't wear my wedding ring. I won't wear anything on my hands which brings it to people's attention. I'll even wear t-shirts with long arms just to cover up the knuckles, so I just have the tips pointing through. So and I hate it if I ever catch a sight of my hands in a mirror, I often do it when I'm driving, you might catch it in the wing mirror or something, I just I hate it. So unfortunately that's something I have to, to deal with, it's just made them very ugly.

And what brought you're attention to that?

It was a, unfortunately it was, it was actually a visit to a hospital, when I was I was going to a clinic and the nurse in question was walking a bit fast and I asked her, 'would she mind to slow down because I had rheumatoid arthritis and she said, 'I know you've got rheumatoid arthritis I can tell from your hands.' And up until that time, I wasn't really aware of it. I wasn't aware because I think if you look down at your hands, you don't see necessarily what the mirror shows or what other people see.  And it was only then that I, as soon as I got home, I looked at my hands and I thought, yes, they are. 

And it, it was one the almost aware things, well if she sees them then everybody sees them and everybody's aware and everybody must be looking at you, thinking, 'oh what's wrong with her, she got, her hands are all deformed.' So unfortunately, since then I try to hide them as much as possible, which isn't that easy really because they're hands.