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She attended a five weeks course organised by her hospital about the practical side of living with arthritis.
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So it affected you emotionally?
Yeah I mean, I'm quite an upbeat person anyway and, you know, and I've learnt to, learnt to sort of live with it and, and I don't think about it all the time , but, it, because it progressed really, really quickly it just, you couldn't, you couldn't being emotional about it 'cause it just completely changes your life you know, you sort of in this upheaval of not being able to do what you'd normally do and, and, you know, and you have to ask other people to do stuff for you and that's not very nice 'cause you, you're used to being able to do stuff for yourself and you can't. So it, it, it kind of limits your freedom in a way it, you can't just, you have to plan everything [laughs]. And do so like that which is quite limiting but.
I just thought it, like old people had it and that was it [laughs] it was something to do with your, your bones and being frail and old, and I didn't really know anything at the time but then I was given quite a lot of information when I was referred to the rheumatologist.
Knowing about it obviously is a lot better 'cause you can understand the best ways to deal with it yourself as well as them helping you with medication and stuff, so you learn about the best ways to do certain activities and, how to, you know, like I was given a lot of information and a lot of, things that weren't just like medically related like how to deal with, certain situations or, you know, how to make things easier and that so's, in that respect was given both sides of the information rather than just.
Can you give me an example?
I went to I was put on a, it was about a five week course and it was sort of more like a sort of social care rather than , just medical care and we were sort, taught about various different sort of kitchen equipment that you can buy and how to use it and exercise and diet and, sort of it covered everything really, that you wouldn't normally get from your doctor and that was really good and that was about, about an hour to two hours every week for about five weeks and it covered a whole variety of things, so I got that, that sort of care as well which was really good.
And who organised that?
That was through the hospital.
Okay.
Yeah through the [name] hospital. |
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She prefers not to tell acquaintances because in her experience they react in disbelief and it's difficult to explain to them that RA can make you very ill.
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Yeah I had people visiting and, and that, and people are quite understanding they don't, well, they don't, no-one's ever been, they just ask a few questions and then they just like oh well I'm, poorly [laughs] but they'll, you know, that I've got support and that it's not, it's just, I don't think they sort of just treat it as that I'm ill and, and, you know, and try and cheer me up [laughs]. But generally they're quite supportive, they're not…
Were there people that you chose not to tell that you had RA, that you had been diagnosed?
Yeah I tell, I'd not, I wouldn't tell just anybody you, I do, I tell sort of people at work and I tell, I wouldn't tell [sighs] I tell close friends but I wouldn't tell necessarily friends that weren't close.
Why?
Well it's just that, it's, it's not something you tell people I don't think because then, you know, they, they at the end of the day I don't want people sort of asking questions and then you just go through the whole thing and then they're like, and the, the first reaction people, give you, “Oh that's for old people.” And, you know, and being so young that's the, the first thing people say and they say, “Oh you're too young to get, you can't possibly have it you're too young.” And then, then they don't realise how ill you can get and, because, at the moment I look quite healthy and, but I wasn't so healthy when it was really bad so, they don't, they don't realise actually how ill you are and I'd rather not go into that anyway [laughs] 'cause it's you just don't do you? |
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When she was very ill she felt unattractive, guilty and 'a burden'. Telling her partner how she felt was important and RA affects her sex life only when she feels 'rubbish'.
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Yeah I mean it affects, I think because you, I think sometimes you feel a bit guilty because you think that you're sort of pulling someone else back because I can do as much as someone else might do, and my partner's quite active and quite sporty and I can't, I mean I do join, we go for bike rides and things but, I join him but I can't do as much as him so sometimes that do you feel that perhaps if he was with someone who didn't have rheumatoid arthritis that maybe he could enjoy life a bit better but I'm sure that's [laughs] not the case but you, it does enter your head, you know, you can't sort of say that, that it wouldn't but that's the main thing that you feel is perhaps that you're a bit of a burden, you know what I mean? And because you, you can't do as much as, as a healthy person might, and, you know, it, at the end of the day you feel, well I felt when, when I was really poorly I just felt like, unattractive and, and, and, you know, you do, even though [sighs] you're thinking it and they're not you do think it you think 'oh I feel unattractive and how can they possibly want me because I'm in this situation?' so that's, that's the main thing is you, you, you feel a bit of a, a burden and a bit on, that no-one would want you sort of thing.
So your self esteem was low?
Yeah, you do, it does make you feel low.
And does it has that effect also on sort of the, the intimate side of a relationship you understand?
Yeah you're not gonna, like jump into bed with each other [laughs] if you feel rubbish [laughs] so [laughs], yeah it does, it does affect that, but then, you know, when you are feeling better you just, you just take advantage of that [laughs] don't you? [Laughs] so.
Yeah.
Yeah it does but, it, it's never been, it's never been a point of, we don't sort of, I don't think it affect it, I think he realises that and it's never really sort of bothered both of us, in that sense but I think you just, you just take advantage of when you are feeling better [laughs].
[Laughs] and it, it was something you were able to talk and communicate and discuss these, these things?
Yeah I mean [clears throat] well you two, if you don't talk about it because obviously, someone else doesn't know how you feel and if you don't tell them then they're not gonna know how you feel so, if you, you know, you have to tell people or you tell your partner, “I'm feeling a bit rubbish.” It, because if you don't, then, they, you can't expect them to understand so you need, you need to tell them how you're feeling and if you're feeling a bit lousy or, what, and you need to tell them when you're feeling well as well because, you know, then they can sort of know where you are with sort of going out or, doing other stuff. |
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She was almost housebound because of her RA. Doctors started her on etanercept (Enbrel) and provided the necessary information but did not promise any 'magic cure'. She made significant improvement within two weeks.
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The reason I started that because everything else wouldn't work the, I've been on various different medications and none of them worked, or they would work for a small period of time and then it would just, just slide back down again, and, I started in, it would be about September of last year, and, the previous six months that was when I was particularly bad, and we'd booked a holiday actually which we had to cancel due to it 'cause it's just, I just couldn't go and the doctors had said, “You're just at the point where nothing else is working so we're gonna put you on this medication.” and they explained that it lowers your immune system and, so it's combating the over-activeness of your immune system that causes your joints to flair up and that, and I was given quite a lot of information actually and they do, make you understand how it works and what the side effects are and, because you have to be quite careful if you get a cold or anything you have to, you have to stop taking it because it can, because it lowers your immune system, you know, you can't just carry on taking it 'cause you'll just make yourself ill. So there, there's quite a lot of information that you have to have and you do have to understand it and how it works 'cause if you don't you can, you can make yourself ill yourself by taking it when you shouldn't, so the information was quite plentiful really and it, what was explained and I think they make you understand it because you need to but then when they, I think, they do, they didn't try to say, oh it's gonna be an absolute miracle cure because they don't want to sort of get your hopes up luckily it did it completely, completely changed me life, going on it, but they said, “Look this is the situation a lot of people have been on various sort of medications and nothing's worked and they've tried this and it has completely turned around,” which it did do, luckily [laughs].
Which drug are you taking?
It's etanercept.
About it was, it, was about six months before I started and I couldn't, I couldn't walk very far I was, mostly sort of housebound really 'cause my partner works so obviously he wasn't, you know, I was sort of in the house really and I'd, very severe pains in my feet so I couldn't walk very far, very stiff, swollen knees, hips, I needed help off the chair, and help in and out of the bath and, just, you, I couldn't do anything really I would try to get up and about as much as possible because I knew that if I just sort of stayed in bed or, I'd sort of sat on the sofa all day it just made it worse so I did sort of try and get up as much as possible but, you know, you, I couldn't do anything that you would normally do, I couldn't go out shopping or I couldn't, [sighs] go out for, I mean I tried to sort of go out for small walks but, even that was quite difficult as well and that was for about six months and I had to stop work completely and not do a lot during those six months. and then, when I started taking the anti-TNF drugs it was about two weeks and I felt better, and, less tired and just, just generally better and then, four weeks later, no it's about six weeks later and we'd, we went to America and we did, well we went to Disneyworld and I walked round Disneyworld for two weeks without any problems, so in, within a space of about six weeks I was completely different, so it really, it's a good [laughs] very good drug [laughs]. |
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Talks about her hospital appointments, including her anti-TNF clinic and the type of tests she has done. She says that there is a lot of monitoring because the anti-TNF is a 'powerful' drug.
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I see my doctor about every six months, but I also see the anti-TNF nurse, about every three months, so you've got that alongside, and then I've blood tests about every four weeks because obviously they need to monitor what's going on. So you, it's not a case of it's a medication where they'll put, you, they put you on it and, and tell you to go home, there is quite a lot of monitoring that you have to do alongside it because it is a quite a powerful, powerful drug so you do have to make a lot of hospital [laughs] visits but, you know, that's part and parcel of, feeling better is that you, you do have to make more hospital visits to, to enable you to, for that medication to run smoothly for you.
Do you know what they are checking with the blood test? What are they looking for?
It's the change in your white blood cells isn't it? [laughs].
They check for your, I don't know what the count is, the rheumatoid factor?
So when, before I was on anti-TNF drugs, I had a rheumatoid factor of about a hundred and twenty and, obviously when you, you've start medication it starts to work that will go down so they can, they can tell by that how, how bad you are feeling 'cause it does reflect I mean in some people it doesn't but it's, in a lot of people it does reflect 'cause I could tell when I was feeling rubbish by looking at my rheumatoid factor [laughs] 'cause it was always very high so, they, they'll look for that and monitor that as well, but they, they ask you as well when you go for going to the hospital they, you know, they check all your joints regularly and see if any are particularly inflamed, and they'll also tell you how you ask you how you are feeling generally as well so that's always monitored.
In which way?
Sort of how, how you're feeling in terms of sort of tiredness or just, just general wellbeing as well.
They'll check all your joints and, and, and see whether they're inflamed but and, they'll ask you about how you're feeling but no other tests no.
If you have any questions or if you need any advice can you ask, can you phone anybody?
Yeah, you can phone the hospital whenever you want. Yeah so, and you can speak to, I can speak to the, the person who I see at the hospital any time I want so.
That's your consultant or your nurse?
The nurse, if I want to I, if I wanted to speak to my doctor I could do as well so, you know, help is there if you, if you need to ask any questions or anything and you can just speak to someone straightaway, so. |
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At every opportunity, her consultant raises the issue of the importance of not getting pregnant while on Enbrel. She and her husband have decided not to have any children.
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Did they say anything about risk during pregnancy or...?
Yeah my, my doctor always mentions it [laughs] every time because she's petrified of people getting pregnant but she mentions it every time I go over the like, “No I'm not having children.” but yeah they always talk about the risks of getting pregnant and anything so they say when, if you do want children obviously you need to let them know first and then they can plan, she'd always said, “If you, if you wanted to have a child you need to plan it and they would take you off the medication and they would plan a course of what to do and, during that period.” So, they do explain that that's quite an important thing that, that you shouldn't… mmm.
And you are taking contraceptives any contraception?
Yeah.
Okay, and do you have any kind of plans to, to have a child?
No, no. Because I'd, I don't wanna come off the medication so [laughs] that again far outweighs the coming off the medication, I'd rather not so, I don't want to have a child because of that reason, and it's not a major thing for me I don't particularly crave for having a family anyway so, but it, you know? It would be, if someone wanted to have a child it would be quite difficult. I would suspect be, a decision to make because obviously, you can't be on that medication whilst you, whilst you're pregnant, so…
I think that would be a difficult situation.
Is this something you have discussed with your partner?
Yeah, yeah we've discussed it, but I mean it's never been, he's not, he doesn't want children and I, not, I'm not particularly that fussed I've never been, desperate to have children so it wasn't a big, a major decision to make but if for someone who wanted a family I would suspect it would be, so. |
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Says that the benefits of her treatment outweigh any concerns she might have about side effects because she didn't have “much of a life anyway”.
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Did you have any questions about this drug or this treatment before you started?
I did have questions about it because obviously it's quite a powerful drug so, but I think, when you're in a situation where you can't do anything and someone says to you, “Well this is, this is one option, and it's been it, you know, it's been trialled with people and where it hasn't work, where other drugs haven't worked with them it's been very successful.” You do have questions, but at the end of the day what you're thinking in the back of the mind is actually if it works, you know, the side effects are irrelevant because you can't actually have much of a life anyway if you don't have it, so you do have quite a lot of questions but they're only as a sort of matter of course if you know what I mean? You like [laughs] you're so desperate to take something that's gonna work that that actually that far outweighs any kind of doubt in your mind about what other side effects are and, and things so, you, all you're thinking about is I want something that works [laughs].
If you're in a situation where you, you can't go out and you can't do things and, even the littlest things take hours, and, you know, you would take anything, you know, the side effects are, you, they're immaterial really because if you don't take it then you'll just end up housebound so, it doesn't really, the side effects are not really if, a major concern [laughs].
But did they talk to you about that?
Yeah, yeah they went through the side effects |
