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Janet - Interview 56

Age at interview: 41
Age at diagnosis: 40
Brief Outline: Diagnosed in 2006. Janet takes Methotrexate 15 mg but experiences severe sickness and nausea. She will start taking Methotrexate in injection form and hopes this will reduce its side effects. She also takes' Tramadol with paracetamol; folic acid and amitriptyline at night when needed.
Background: Janet lives with her husband. She was told by her doctor to stop working as a horticulturalist because tasks such as digging and heavy lifting were affecting her condition. Ethnic background/Nationality' White.

More about me...

Janet was diagnosed in 2006. She takes Methotrexate 15 mg but this drug makes her experience severe sickness. She will start injecting her medication in the hope of reducing the side effects. She has been on Methotrexate for two years but thinks that this drug is not controlling her RA as well as it should. Janet still experiences a lot of stiffness every morning.

Janet had carpel tunnel surgery that has helped improve her wrists movements. Doctors don't know whether the problem with her carpel tunnel was linked to her rheumatoid arthritis (RA) or not. Janet's mother was diagnosed with rheumatoid arthritis in old age and also had carpel tunnel surgery. No one else in her family has the condition.

Janet says that it is difficult for others to understand how she is feeling because she tends to put on a 'brave face'. She thinks that her husband only began to understand how RA affects her after he went with her to one of her hospital appointments. Janet says that all aspects of a marital relationship, including sex life, can be affected by a condition like RA because the partner might feel rejected. She and her husband are able to communicate and talk about things and that has helped. Janet is worried about her chances of having children because of her age and her condition. The idea of being taken off medication months before trying for a baby is a big concern of hers.

Janet trained as an horticulturalist and was very disappointed to find out that it is a job she cannot do now because it can be too demanding on the body. Janet is thinking about what to do next but is unsure of her options. She does not know of any organisation that provide information and advice about employment/career opportunities for people with RA. 

Janet says that she has always eaten healthily. She has been a vegetarian for many years, but doctors have suggested she includes fish in her diet because fish oil is good for the joints. Since diagnosis Janet has noticed that dairy products aggravate her symptoms and has switched to soya products. Similarly she has tried a gluten free diet and says that she felt better on it. Regarding exercise she has found that the best one is walking. Movement alleviates her stiffness so she tries to walk for about 30 minutes most days. 

 

She wants children but is concerned about her age and worried of the prospect of stopping her...

She wants children but is concerned about her age and worried of the prospect of stopping her...

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My main worry is the fact that I still haven't had any children yet, and I'd like children although I'm getting on a bit [laughs]. I'm ageing. And a lot of the drugs, well, the drugs that I'm on, I have to be off for at least nine months to a year before I can try for children. 

Which, I considered before I went on them, anyway, but it's a slight concern and that, you know, after that time maybe, I wouldn't be able to fall pregnant anyway. And also what would be controlling the pain, and the arthritis when that happens. I'll have to go through even more pain. At the moment, I'm on my painkillers, as well as the methotrexate, to try and control the pain that I'm getting.

And about pregnancy, what would you need? What, what would you have to do? Have you talked to, or discussed with nurses about it?

Not really because we've not reached that point yet that I've really seriously thought on about giving it up and, you know, I know I can go and talk to them about it. There is also a phone line that I can ring whenever I want any help, a rheumatoid phone line, which, they do get back to me within twenty four hours of me leaving a message on there.

Which is very helpful, you know, if there is a problem between appointments, there is somebody there that you can ring. But at the moment, I've not reached that point of saying, 'Okay, let's try for a baby, you know, or let's give it up.'

Although I do know that time is not on my side [laughs] at the moment. So it's something that I have to think about seriously. But, yeah, I know that it's at least nine to twelve months I have to be off it before. And then, like I say, I just worry about how much pain I would have to endure in the meantime so.

 

Janet was diagnosed in late 2006 and her illness has affected the type of work she can do....

Janet was diagnosed in late 2006 and her illness has affected the type of work she can do....

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Originally I trained to be a horticulturist at college, I went to college for two years and I got. Top results. And I thought I was going to go into that line of work, but, of course, the rheumatoid arthritis affects that line of work. So I've not been able to use that so, I've hit quite a depression after training for two years, to do something, and working really hard for something, not to be able to carry on with it, I hit quite a depression. And occasionally, I still hit depressions, because I know I'm not capable of doing what I used to do. When I wake up in the mornings I'm still aching.

My back aches, my joints ache. It takes me a good hour in the mornings to get going, so I have to, I always make sure I get up an hour earlier to everybody else to actually get going in the morning still, which means the, the drugs aren't controlling anything at the moment. And that can run you down quite a bit.

I've been working part time for the last two years on and off jobs. One job in horticulture in the summer but it got too heavy, and I was advised by the hospital to stop doing it. And the other one is for a shop.

And again, I went back full time this year and I just couldn't cope with it at all. I ended up having to give it up so I'm having to come to terms with the fact that I can't do what I've always been able to do.

And I'm having to come to the terms with the fact that I may have to retrain in something new and something different. So not brilliantly [laughs], I'm still not brilliantly coping at the moment. Two years on, I've sort of come to terms with the fact I've got rheumatoid arthritis but not really come to the terms with the fact of what I can and can't do.

I still need to find my little niche and what, what I can do with my life. I don't want to give up work, I don't want to sit at home, I've done that and, it, you end up, your depression gets worse. You ache more, you're not doing anything, you're not seeing anybody and you get more and more on a downward spiral.

Yeah. So is there any jobs within that field that you might think that.

Well not really. Everything is manual. I mean, the job I've been doing part time, it starts off with just seed sowing and planting or whatever, and that's quite rhythmical and it's quite, actually, good exercise for your hands.

But it's when it gets on to the heavier work of planting on, planting into bigger pots or planting into the ground, that it starts to become more tiresome for your back, for your knees, for your legs, for your, your arms, for your wrists.

So, you know, I can do a little bit in horticulture but there's nobody that wants you for just a little bit, you know [laughs]. It's a range of work that you have to do, and, you know, although I enjoy it and it's nice to do it in my own garden, I've had to come to terms with the fact that I can't spend as long in there myself.

 

She is a vegetarian but recently started to eat fish. She has noticed that dairy products and...

She is a vegetarian but recently started to eat fish. She has noticed that dairy products and...

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Now, let us talk a little bit about lifestyle in terms of diet, alcohol, drinking alcohol, or smoking or. Have you made any changes to your diet or?

I've always been vegetarian since my early twenties. I have noticed, if I eat a lot of dairy, it gives me a lot of pain in my wrists and my fingers. So I've been trying to avoid dairy as much as possible. I also know, if I drink wine, that it gives me more pain than normal, in my fingers, in my joints, in my wrists. Although I still have the odd glass of wine. 

But, no, I was never a binge drinker. I would never go out and, and, and drink loads but to have a, a bottle of wine of a weekend, you know, and have a few drinks, but like I say, with my sickness, and with the methotrexate, I really feel like I can't have more than three glasses anyway, I just feel like I'd be too ill and I feel really, really bad the next morning so it's just not worth it. It's really not worth it.

I have tried to go gluten free recently, well last year, and that kind of helped a little bit. I wasn't gluten free long enough to find out how much it helped, but it, kind of, helped a little bit with sort of, weight loss which makes me think I've probably got an allergy to it, weight loss and joint wise, it wasn't so bad on my joints. 

So it's something I'm going to look into again this year, and try and do exclusions and see how I get on. But I know the dairy is definitely a problem but so, I've been trying to avoid that and drink soya milk and have soya yoghurts etc.

And. But like I say, I've always been a vegetarian so and I've always recent, for the last year or two, I've had organic food as well, organic box scheme, so I think I eat pretty healthily [laughs]. So, I don't know whether, really, there's anything one that causes pain or whatever, but I feel the dairy and the wines affect, affect me.

My weight has always been an issue. I've always had a problem with it. I went to a dietician before I was diagnosed with rheumatoid arthritis and, as far as they were they were concerned, I was eating the right portions, the right sizes, I was eating the right stuff, but I just wasn't losing any weight at all. I was exercising. I was going to the gym three or four times a week, you know, on top of just normal everyday exercising, walking and cycling and I really wasn't losing any weight, so I, kind of, then decided it was probably down to allergies which is why I looked into the allergy part, and seemed to have found that, it looks like I could be allergic to some sort of gluten, and maybe dairy if it's causing me the pain so.

I was advised at the hospital to start eating fish again because fish, fish oils are meant to be good for the joints, which I do do, but it's not something that I particularly want to do [laughs]. But I do do it for health reasons but I don't think it's made much difference at all really [laughs].

 

Janet says that initially her stepchildren couldn't understand why she was unable to do those...

Janet says that initially her stepchildren couldn't understand why she was unable to do those...

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I mean, although I haven't got a family, I've got step-children and they've had to come to terms with it quite a it as well. My stepdaughter is nine years old. My stepson is thirteen and although he's older he's just very huggy now, but she is very, she wants to sit on your knee, she wants you to pick her up, run around, dance around and it's taken her a lot to come to terms with the fact that I'm not the person I used to be. I can't do all those things and I think for somebody with a family it could be quite a, quite a problem for them. I mean kids do understand. Kids adapt. 

But every now and again I get these comments of, 'Why don't you do this like you used to do? Why don't you do this like you used to do?' And I just have to say, 'Well, I can't anymore, you know. You know I can't anymore.' So, I think somebody with children, it could be quite a problem.

Do they live with you and your husband?

No. They come every weekend. We see them every single weekend. Try to spend a lot of time doing homework and stuff with them. And, again, a lot of art stuff and, again, I can't do the things I used to be able to do. Baking with kids, and art work with kids. I just have to stand back and say, 'I'm having a bad day to day. You do it with dad and I'll direct you. You know, I'll tell you what to do.' It's not quite the same really.

But they have responded.

Oh, yeah, yeah. I mean kids adapt quite easily really but they have learned, yeah, they have learned that I can't do what I used to do. But it doesn't mean I don't get reminded of that every now and again by them [laughs].

 

A meeting with a multidisciplinary team at the hospital was much more helpful to her than looking...

A meeting with a multidisciplinary team at the hospital was much more helpful to her than looking...

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In the beginning, my first couple of appointments, I didn't actually receive anything at all apart from just an information sheet on the drugs and just an information sheet and a couple of website addresses, DIPEx was one of them, just to go an research myself. And probably the research I did was more damaging than anything else. I probably saw a lot more of the negative side of it than, than any positive side of it.

But on my third appointment, the nurse I was seeing at the hospital, [laughs] said, 'How about you come up to [hospital] and we can have an hour or two with you going through, you see a physiotherapist, you see an occupational therapist, you see, you know, different people in different roles who can explain how you can cope with things better, what you can do to help yourself, what exercises you can do.' 

And I went up there to do that and, and that was very, very helpful. Really, really helpful. At the time, I was suffering from problems with my wrists as well, carpel tunnel syndrome. 

And since, beginning of last year, beginning of 2007, I had an operation on both of my wrists and that's, kind of, helped that, but originally, they were helping me with that as well. And they referred me to a company that dealt with, sort of, disabled people and, and tools and, and things that could help, which was very, very helpful, at the time.

Yeah.

So, you know, I felt I actually got something out of that appointment, but it was only just mentioned in conversation that they could see me at [hospital], and and spend this time with me, but I think it was probably the best thing that happened really.

 

She says that RA can affect relationships because it is difficult for others to 'see' how the...

She says that RA can affect relationships because it is difficult for others to 'see' how the...

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Nobody actually realises just how bad it can get. I eventually took my husband along to one of my appointments to prove just how bad it was and, and they actually helped, by explaining the disease more to him, so he actually knew how it affected me. 

And I think he's a little bit more understanding now, but at first, he didn't come to any of the appointments or any of the, the, the doctor's surgeries or, I went to day surgery and saw a physiotherapist etc., but he didn't come to any of that to start off with, and I think him coming has actually helped him understand what I go through each day so.

So, I mean, it is a condition that does affect relationships?

Yes, definitely, definitely. And also [laughs] the, the sort of sexual side of a relationship, although it doesn't affect me that much, with the sexual side of it, it's more the emotional, how you're feeling, how run down you're feeling. How, sometimes, you just want a cuddle, and you just don't want to know anybody, you just, you know, it's, it's, it's very difficult, sort of, trying to explain how you're feeling. When the other person thinks, you know, you're pushing them away sometimes it's just because you just feel so ropey, so grotty, that you just, you know' Don't want to know.

How, are you able to, to talk to him, to your husband? Communicate?

Yes we're very lucky we've got a sort of relationship that we can actually talk about a lot of things, so we do a lot of talking so, yes, but it did help for him to go to the hospital and realise just what it entails of, of what I go through and I'm, you know, how bad it can get. Or it could, you know, could get in the future etc. etc. 

So he's now fully aware of exactly what's going on. Whereas I think it was quite easy for him to turn a blind eye before and just you know, expect me to do everything the same as I always did before so.

Yeah. I mean, he did come to the last appointment as well, for the injections, for the self-injection, sort of, training because she said, 'Oh, bring somebody along if you want for moral support.' 

But it meant, also, that he could ask a few more questions that he's been wanting to ask, and he came out with a few questions, without being asked, you know, 'What do you think of this, that and the other?' He actually came out and said, 'So, she does this and.' I actually felt like he was, actually, getting involved, for a change, and I thought it was a good move that he came with me. Really was. Because he knows now what I have to do, and what I have to cope with. And he knows again, that if he needs to ask any questions that he could always go with me for any appointment. 

The partner?

Yeah. They, they don't know exactly what's going on with you. All they can see is, maybe, grumpiness, tiredness, miserableness, you know. Saying that you're in pain, but not actually feeling or seeing it, something totally different.

I mean, some partners can be very understanding, some of them just, you know, just don't understand at all. But I would suggest, when you can, to take somebody with you to the appointment.

So they also understand what everything entails, what's going on, what treatments entail, you know. How the treatments are going to affect you, what's going to happen. Because, it's all very well, I took home leaflets and information and told him when I got home, but I think it's better to hear it from a nurse or a doctor, than from me.
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