Table 5

Thoughts and feelings in everyday life with giant cell arteritis

Frustration It is frustrating; there’s no doubt about it. I can’t say it isn’t. (Clare, 75, 2 years since diagnosis)
It’s very frustrating, because you—your mind still thinks you can do things, but actually […] when I try, my body flags out very quickly. (Sue, 67, 3 years 9 months since diagnosis)
I get frustrated because […] I think, 'This has got to be done.' Dinners got to start and if I'm not well I say, 'Can you give me …?' 'In a minute. In a minute.' I'm not that type of person. I want to get up and get it done and sorted. And I'm getting very frustrated that way. (Dorothy, 78, 2 years 11 months since diagnosis)
Oh frustrated, I suppose, really, you know. I, I want to be doing things but you know very well that you can't. (Keith, 71, 3 years 6 months diagnosis)
Loss of independence I can't do the jobs I used to do about the place, you know. I’m gonna have to get a gardener in to help me with the garden because it's getting overgrown and um things like that you know and jobs around the house where I would do it myself I've got to get someone in to do them. […] it's just that mainly I quite enjoyed doing it myself and I know I can't now. (Robert, 92, 2 years since diagnosis)
You just can’t do things for yourself anymore and that—this is what, this is what I hate more than anything. […] So it re-, it really gets you down—it get—it does get you down sometimes […] it’s just that the, the things that you, that you can’t do for yourself that you’ve always done and, and yeah, you’ve got to keep on asking other people to do things for you and that, to be honest with you, that is not me. (Laurence, 72, 1 year 7 months since diagnosis)
You lose your independence when you can’t drive […] I do miss my driving really. (Clare, 75, 2 years since diagnosis)
Unable to cope/manage I really do find some things a bit of an effort […] I feel pathetic at times and it’s just not me to feel pathetic. […] I feel as if I’m kind of being stupid and making a fuss. That I should be getting on with things and I—and sometimes I just can’t; I just haven’t got the energy. (Mary, 72, 2 months since diagnosis)
It's getting that I said to my husband, 'I wish I was six foot under.' […] I'm getting quite depressed with it […] It's very demoralising when you're not the type of person that gives up. […] And I find it very hard that I'm not coping like I used to. (Dorothy, 78, 2 years 11 months since diagnosis)
I find the steroids really, sort of, quite hard to cope with because they’re—they’re very—they have some peculiar reactions, very, very tiring. (Rose, 73, 1 year since diagnosis)
Reduced confidence Well body image is something that may seem superficial but when you see yourself covered in lesions all over and your hair falling out and these ghastly bruises all over it's, it doesn't make you feel good. (June, 75, 2 years since diagnosis)
I had lost confidence in myself and I just did not have the confidence. Obviously because I've put weight on as well and I hadn't been to church for a while and, you know, people are going to see the difference in me and they're all going to say, 'Oh, what's wrong? How are you?' and all this sort of thing and you just want to stay away from people 'till you get back to normal and you don't have to answer all those questions. […] Getting hot. That can affect you, your confidence because you don't want to be with people because you start to sweat and your face goes bright red (Linda, 68, 8 months since diagnosis)
Out of my right eye, I can’t see […] It’s taken all my confidence away. I’ve got no confidence at all. (Sheila, 73, 11 months since diagnosis)
I felt very unattractive. […] Where I was, you know, that confident, working woman who would jump in the car and go out and see all these big corporates and, you know, enjoyed life to feeling like a really old, old person. Just, just awful. Awful. I see the photos […] I just look hideous. (Cressida, 62, 5 years 5 months since diagnosis)
Fear and anxiety That is something I’m really worried about because I’m petrified of going blind […] I’ve had a cataract in one eye for about five or 6 years; very slow growing. […] then, in February this year, I just thought it was getting a bit worse […] I went three times to the opticians because I was worried about my sight. I was sort of semi-paranoid about losing my sight. The consultant assured me that I couldn’t lose my sight once I was on the steroids and so I felt quite brave then about that […] I’d heard so many stories […] they (people) say, ‘Oh, my granny went blind with that,’ and all this business. […] Then about 4 weeks ago, my eye – right eye started to fade and fade and fade and fade and today, as we speak, in my right eye, I can only distinguish light and dark. I can’t distinguish any shapes or people or anything […] the cataract has suddenly just grown right across my eye and it’s gone like that in a matter of weeks […] my biggest fear is having another relapse. (Sheila, 73, 11 months since diagnosis)
I do worry about my vision, and glaucoma can be affected by GCA as I understand. Certainly within the last few months, since I’ve been diagnosed, my vision’s changed quite a lot. (Mary, 72, 2 months since diagnosis)
It was having all these ill effects and what's it doing to my insides if it's doing this visibly to the skin and the hair? That was a worry. (June, 75, 2 years since diagnosis)
I’m always in edge in case I lose more sight, and I think that’s understandable, frankly. […] I’m reducing my steroids, I’m on three milligrams a day at the moment, reducing down to 2.5 over a period of many weeks. I’m concerned that when I finally come off the steroids, is it all going to come back? That is a fear I have. (Gloria, 72, 6 years since diagnosis)
I found out about GCA and prednisolone and that sort of thing, and the risk of blindness and, and that – it sort of brings you down to earth a bit more […] I’d looked after patients on steroids and their skin was so fragile and bones crumbling, and I was thinking, ‘Oh no. It’s all going to happen to me.’ […] It was just the fear of the side effects of steroids. (Iris, 74, 4 years 7 months since diagnosis)
…these alendronic acid tablets which I can’t take now because of the problems I’ve had with my gums. So at the moment I’m sort of stuck between the devil and the deep blue sea, I don’t want to lose my teeth but I’ll have to if, I’ve got to the take the tablets I don’t know […] I’ve got to stand up for an hour after I’ve taken them and I’ve got to have an empty tummy. I’ve got to do it first thing in the morning and they seem, I’m a bit scared of them to be honest. (Anne, 85, 2 years 6 months since diagnosis)
Uncertainty To me, one of the most frustrating things is when I’m talking to somebody medical and they just give me the textbook quotes […] in terms of how long the condition’s going to last. I mean, some doctors are still saying, ‘Oh,’ you know, ‘2 years’. Well, maybe for some people, but there are a lot of us out here that, you know, have had it a lot longer. (Yvonne, 65, 4 years 7 months since diagnosis)
My only concern is have I been told how severe that this condition can be and, is it something you can expect to keep reoccurring; you know, a little bit forever or after I’ve got rid of this and gone through this regime that we’re going now and I got down to zero steroids, is that it or is it likely to recur again? (Neville, 74, 12–18 months since diagnosis)
I don’t know whether it’s just, is it latent or is it just cured? (Laughs) I don’t know how this works. (Joan, 81, 1 year 4 months since diagnosis)
Well I'm just puzzled sometimes as to […] whether I would have been like this whether I'd got this other thing, or whether, you know, it's all part of it. (Robert, 92, 2 years since diagnosis)