Table 4

Impacts of symptoms of giant cell arteritis and its treatment on activities, behaviours and circumstances

Work and volunteering I've given up a lot of my commitments. I've had to give up a lot of my voluntary commitments, trusteeships of this and that, and doing refereeing. (June, 75, 2 years since diagnosis)
I did used to play the organ at church and various things but I can only play now to amuse myself because I can’t read the music. (Clare, 75, 2 years since diagnosis)
It was hard to keep working when I wasn’t sleeping very well. That was probably the main thing […] I had had almost 3 months off from work […] and I’d just – I didn’t want to be retired on the grounds of ill health. I love my job. I wanted to get back to it. (Yvonne, 65, 4 years 7 months since diagnosis)
Having taken the steroids, you know, after my breakfast, my head was buzzing, I couldn't concentrate and I was - it was like I was having an out-of-body experience. And, and I said to my boss, 'I need to go home,' […] I sent in doctor's notes for about two or 3 months […] I don't think I could have gone back. […] there is no way on God's earth that I could have worked. I couldn't, I couldn't have done it physically […] I was sending in sick notes and […] in the end […] they just let me go. (Cressida, 62, 5 years 5 months since diagnosis)
Relationships How my husband’s stuck with me this last year, I don’t know sometimes because I have – I’ve been, I’ve been spiteful to him for no reason because I’m – don’t feel quite so good and I’m ratty […] it’s horrible and it’s pathetic and I hear myself doing it and I know I’m doing it and I feel like really mean for doing it to him […] and the granddaughter’s been […] staying here and […] I love her so much – she’s irritated me as well. […] and I said, ‘Clear off. Go away’ […] and it’s because I’m irritable and I’m miserable. (Sheila, 73, 11 months since diagnosis)
I became quite an intolerant bastard and wouldn't put up with anything and my poor old wife of 40 years had to put up with it. And I—I honestly believe that when they upped the dose I should have been locked up. I think I should have been kept out of people’s way. (Peter, 70, 6 years 8 months since diagnosis)
None of (my family) really knew what I was going through […] I know that my niece was a bit sceptical when I didn't got to her daughter's wedding […] And it wasn't until she saw me getting slightly better about a month, 6 weeks ago that she then realised how poorly I'd been. (Linda, 68, 8 months since diagnosis)
I get a little bit short tempered than I used to be […] I react more than I used to, you know I shoot off a bit quicker. (Anne, 85, 2 years 6 months since diagnosis)
Hobbies, social and leisure activities I can't do my hobbies like I used to. I used to embroider, I used to sew. I used to knit and crochet. I can't do that […] I just can't do my hobbies. And I used to enjoy cooking […] I can't go on holiday like I—when I want to and I can't plan anything. I don't know how I'm going to be the next day. I get up, I feel all right. We start to go out and I'm out and I'm getting bad and you know, the headaches start and my sight starts to get very deteriorated, blurred, and my joints ache. (Dorothy, 78, 2 years 11 months since diagnosis)
One can’t make plans. One can’t say, ‘Well, I’m going to go to (city) tomorrow and meet so-and-so and so-and-so,’ […] You have to make a decision on the day, which is not always possible […] because you don't know how you’re going to feel. (Rose, 73, 1 year since diagnosis)
The steroids have made me shake. […] My whole body trembles and I, I’m—all my life, I’ve been a patchwork and quilter and sewer, clothes dress making and I, I can’t thread a needle now […] I’ve had to give up my classes. […] I can’t read a book. I’ve lost the concentration […] I’m not a person who likes to be on my own an awful lot. That’s why I join clubs for sewing and grouping and photographing because I like to talk to other people and have a bit of fun and a few smiles and everything. (Sheila, 73, 11 months since diagnosis)
What I have found, of course, is that I’m not covered by travel insurance, and I used to do an awful lot of travelling […] they won’t insure – cover it […] I mean I like to go to Africa and places like that off the beaten track, but I’m a bit hesitant about that now. I suppose that is a big impact on my life. (Mary, 72, 2 months since diagnosis)
If, for example, I go to a restaurant, I need to sit by a window so that I have the light. So it does have an impact on my life, certainly. I also find going from sunlight into a dark room very, very difficult now because I can’t immediately adapt to the light changes. (Gloria, 72, 6 years since diagnosis)
Household tasks, daily routines and personal care I struggle to cook. I struggle to do housework. I struggle with everyday living. (Dorothy, 78, 2 years 11 months since diagnosis)
When I go shopping […] I can sort out the, the notes but it, it’s the change that I have difficulty with […] My jewellery, necklaces […] I use the ones that I can put over my head that I don’t have to try and fasten, but that’s difficult. And I can manage to make a cup of tea and that sort of thing but, you know, it’s obviously not as easy as it was, but everything takes a lot longer. […] Obviously, when you’ve only got part sight in the one eye, your focusing isn’t right at all […] I go out in the garden now and I go to pick up some weeds and, and it takes me quite a while to get my hand on, onto the weed; I think I’m there to pick it up and I’m not […] picking it up at all. (Clare, 75, 2 years since diagnosis)
Some days I, I would try and do supper, make supper but more often than not I couldn't do it. (Cressida, 62, 5 years 5 months since diagnosis)
I feel very weak actually; and not a tremor but shaky. My handwriting was never brilliant but it is dreadful now. I have to type everything because it’s so awful. (Mary, 72, 2 months since diagnosis)
When I get up in the morning, I can’t dress myself properly […] changing your underwear; I have to hang on, onto the bed, side of the bed with one hand while I negotiate the underpants and the underwear with the other hand. (Laurence, 72, 1 year 7 months since diagnosis)
I was on alendronic acid for, to protect the bones but I stopped that because I found it so difficult […] even though it was only once a week […] you have to take it before anything else and not have anything to drink for at least half an hour and I found that really difficult because when I wake up I'm ever so thirsty and to have to take this pill and then wait half an hour before I could have a cup of tea I found really horrible. (June, 75, 2 years since diagnosis)
I’ve got no osteoporosis but I do take a tablet each week for that. I have to take one a week, on the same day, every week and sit for half an hour after I’ve taken it. (Clare, 75, 2 years since diagnosis)
Financial circumstances I'm now paying for somebody to clean the house. They come in fortnightly and have a good go through for me. (Dorothy, 78, 2 years 11 months since diagnosis)
Well for one thing it's the cost really of employing people, you know, it's becomes quite expensive at times. I mean we get a female into once a week to help with housework, house cleaning, things like that. (Robert, 92, 2 years since diagnosis)
At the end of the medical, he said I passed the medical, I wouldn't be entitled to any employment support allowance because, according to the medical, I had no descriptors of scored points for disability. […] What it really meant was that none of the descriptors that they worked on to see how ill you were, applied to me. […] they’d answer the questions on the computer and there was nothing in there for anybody with PMR and GCA. […] I’d passed the test, but I pointed out I could only work for 90 min. (Peter, 70, 6 years 8 months since diagnosis)
I went and got myself a bigger screen for my television, a bigger screen television, so I can watch the television. (Clare, 75, 2 years since diagnosis)
Driving Well, I’m, I’m more cautious actually, especially if I’m driving. Although my—what I see, I see quite well now I’ve got my new glasses, but the actual blind area is a little…. It’s not a problem, but I have to be careful with traffic lights for instance, because I can be going along and for one brief second the traffic—the red light isn’t there. Then if I change just slightly my range, or look just slightly to the left or up or down, then the light is there and I know it’s there and I keep my eye on—at that level then. (Mary, 72, 2 months since diagnosis)
I do drive locally and some long distance but, you know, I, I don’t do anything for a long period of time. That’s as a result of the illness really, I think. (Barbara, 71, 2 years 10 months since diagnosis)
It took me a long time to learn to go back to driving and I still won’t drive on the motorway because it’s my right eye that’s affected and I’m frightened that I shan’t see cars if I pull out. So I’m very careful. (Gloria, 72, 6 years since diagnosis)
The only thing that I really miss is being able to drive…so I have to—obviously have to rely on friends and family. (Clare, 75, 2 years since diagnosis)