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After an initial diagnosis and flare 11 years ago, she was re-diagnosed and told it could be lupus.
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During the second flare up after I'd had the break for 11 years, again there was slight confusion over the diagnosis at that stage because I'd had various blood tests and, and to me, I, you know, it just seemed exactly the same as I'd have before. I knew at that stage it was rheumatoid arthritis but I had a phone call one morning from a doctor from my surgery saying “You've actually got lupus” and it, I mean, it has a longer name than that but it's commonly known as lupus. She said “the blood test results show you have Lupus.” And again I was quite shocked at that because I didn't know what lupus was.
And so I said to her 'Well, what's the outcome?' or something, I said something like that and she said “Do you mean the survival rate?” And I, and suddenly I thought “Gosh! I didn't know we were talking about a condition that, you know, is potentially fatal”. And she said 'Oh no it very good, you know, it's very rare for anybody to have major problems with it'. And she, you know, she tried to be reassuring.
She said 'Oh most people, you know, don't have it in a severe form' and you know we had a conversation about that and I thought 'Oh well at least it's been diagnosed'. And then, but it preyed on my mind that, you know, it could be, become a much more serious condition and, you know, we went to see her and talk it through and I thought, you know, 'This is a completely new thing that I've not faced before'.
But then in the end it was decided that when I saw the consultant. He said 'No I don't think it is that, there is an overlap, some of the symptoms can be very similar but you don't have enough of the symptoms for it to be that'. And you know, he felt sure that it was just rheumatoid arthritis but, you know, at the time that just seemed another sort of upheaval.
And quite a shock over the phone to be told?
Yes it was, yes. Absolutely, yes, something I'd never heard of that could even be worse than, you know, the condition I, in a way, I think when I saw the consultant I almost felt relieved that it was only rheumatoid arthritis, bad as it was. You know, I felt 'Well this is something I've dealt with before and got through'. So, you know, it was in a really bad stage at that stage, but I thought, you know, it will settle down again and go away. So, you know, it was almost a relief at that stage to think it was rheumatoid arthritis and not this other condition. |
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Got encouragement and support from family and friends who knew of her diagnosis.
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And after you'd found the diagnosis was there anybody you chose not to tell?
No, no there, there were, there wasn't. I felt I had a lot of support at that stage from people knowing. I, it, I mean obviously it was a big shock to me but other family and friends and people from the church were, you know, seemed very concerned and, you know, people send cards or flowers and visit, and you know, that, that was encouraging and sort of helped me get through that initial stage of it. So quite a few people I think did know and obviously people from work and I think news got around quite quickly at that stage and I did find that a help. |
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Different consultants treated her quite differently in out-patients.
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Well, I, I felt happy with the treatment, the medication the, when I saw the consultant and I was put on to the methotrexate obviously that worked very well, so in that sense I was very happy but, the thing that I wasn't happy with was the fact the, I felt the, my appointment time was very rushed. I didn't feel he was that interested in answering my questions. I had you know quite a few concerns at that time that, because that was when the flare up was quite bad. I had quite a few things I, I wanted to ask, and I'd, I felt I got very short answers.
I didn't feel much interest was shown in what I was asking. I didn't feel I'd really got the information I wanted. And I, I didn't feel I was trying to bombard him with questions. I felt they were, you know, quite reasonable things to be asking and I came away feeling quite upset at that stage and I saw a different member of the consulting team this time and had quite a different experience. She listened to what I was asking, she was quite happy to answer questions, she gave me lots of information I just felt it, it wasn't a rushed appointment. And I just came out feeling so much better for it. And I just think, you know it's amazing the difference in, just the way I was treated you know for the same sort of appointments. |
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She didn't like being called 'a rheumatoid' by a nurse at the hospital.
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Once when I went for a blood test, a routine blood test, when, when things had settled down and it was a different nurse and she said, she said something like 'Oh you're a rheumatoid' or something like that, that just sounded such an odd thing to say to me because I hadn't actually got any problems then and it was almost like a label that I didn't really like it 'cos I didn't feel, you know, I was just going for a routine blood test because of the medication I was on and I just feel that, you know, I am somebody who has in the past had these rheumatoid arthritis flare ups but I don't feel that it's something I'm burdened with all my life.
I do know it's sort of, the possibility's always there but I don't feel it's something that if I'm describing myself I, I would sort of feel that's part of what I am really. I would, you know, I would say I'm, you know, define myself in perhaps what I do for my job or the family I have, not in my sort of, you know, health background. |
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She has experienced severe flares which start quickly and are very disabling.
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So 11 years went by and, you know, I had three children during that time and you know lived a normal busy life of a mother and, and then again out of the blue 11 years later I had another flare up very, very similar to the first one in that it came with absolutely no warning and was very severe. Again I got to the stage very, very quickly of being very incapacitated, hardly being able to dress myself, get up from chairs, just doing the everyday jobs was extremely difficult particularly early in the morning or later in the evening. And, and at that stage I had young children and, and it was extremely difficult to manage looking after even myself let alone the children.
But eventually, again, it did settle down over some weeks and months and again things returned back to normal. I did stay on the medication at that stage. I was on a, a medication that was actually known to affect the condition itself rather than just the anti-inflammatory tablets that deal with the symptoms.
So I just kept on that medication and things settled down and once they got better I did hope that there would be many more years before there was any problem again. And almost exactly a year later I had another flare up and I felt terribly disappointed at that stage because after the first episode I'd had a long time with no problems and then this had happened like just one year later, so again that was very disappointing.
It was a bad flare up again, but perhaps not as severe as the previous two. I did have to have time off work again and had all the difficulties with looking after the children and just coping day to day with everyday life just from dressing to, you know, trying to get in and out of a bath or doing any sort of cooking was extremely difficult. Even just cutting bread with a bread knife would be very, very hard and the most simple things were very, very difficult.
Because I know if I get a flare up it happens very drastically very, very quickly whereas I'm not sure if that's always the case, I think in other people perhaps it takes longer and they get symptoms in particular parts of their body. I, I think one of the things I haven't said earlier was the thing that was so bad with it was it affected right through my body. I think sometimes people have arthritic problems and it's perhaps with particular parts of their body. With me it seemed to affect everything all at once very suddenly. Which was very, very frightening and very disabling. |
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Early morning stiffness made it difficult to dress herself and her children.
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Just, almost anything that involves moving your body. Sleeping is, is very difficult when it's very, very bad and you do just feel so weary and uncomfortable at night. That I think that was one of the worst things. Getting up in the morning. Just, just, moving your body to get out of bed and, and just, all the joints seemed like as if they were like totally rusted up and any movement was just so difficult.
And, and like my hand just really was locked like this and, and just wouldn't open out. So, you know, I couldn't brush the children's hair and put their, I mean my husband could do quite a lot but he never seemed to manage to put the, the little hair bands in their, the little hair ties in their hair and I just really couldn't do that. So that, just, just little things like that might be difficult.
And just, getting myself dressed. Just a simple thing like that would be so difficult and, and I really couldn't put on a jumper like this or anything that had to go over my head. so I would normally somehow manage to get a T-shirt on with a lot of difficulty but, you know, it would have to be cardigan and even that would be very, very difficult. Put, and, and really just to bend down to put socks on would be tremendously hard.
Or, just, just to get dressed and you felt really awful that, you know, you couldn't even dress yourself without a tremendous amount of difficulty. And, and to have, I, I did like to have a bath every day because I just felt the warmth of the water was quite soothing but it, it was just so difficult to get in the bath and then you think 'Am I going to be able to get out? How am I ever going to get out of this bath?' And it would just be tremendously difficult to do that. |
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Wishes she had known more about how newer arthritis treatments can help people to avoid disability.
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And the other things that I would have liked to, to have read which I didn't read from any of the leaflets or other information, I found information about the actual drugs. You could look up a particular drug and get details of it, but I, I really wanted to read that, you know, in the past people, you know, over years got these deformities with, with these flare ups but now we have these drugs, you know, that we didn't have before and, you know, things are much better now.
People, you know, become less disabled or have, you know, much better outcomes than in the past. Because although I didn't know anybody who'd had my particular type of flare up at my particular age you do bump into a lot of older people who have had this condition for years and who've had awful difficulties with it. Which can be a bit off putting and I think well in those days they wouldn't have had these drugs so you know there must be some benefits and I, I wish that had come out a little bit more in the literature. |
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Found important information on the internet about how to take her methotrexate.
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Right, well, when I'd been given the methotrexate I felt like I'd just been told to take it and given a leaflet and hardly been given any information about it. I hadn't even been aware that I was meant to take it with food and when I got to the chemist after, for the first time, I thought, 'Oh the consultant didn't say that' and I said to her 'Are you meant to take this medication with food?'. And she didn't know and she looked at the leaflet and said 'Oh I can't see anything about it here'.
So to start with I wasn't taking it with food and when I got the information from the Internet it said take it with food. Which I think is quite important because obviously, you know, there's always the possibility of stomach ulcers and things like that if, you know, it does irritate the stomach if not taken properly. So I hadn't been aware of that.
I hadn't also been aware that to take folic acid with it can, is useful and can stop just minor symptoms like mouth ulcers, that was on the leaflet and when I suggested that to my local GP he said 'Yes, that would be useful'. And it mentioned other things like it's quite useful to have a flu vaccine. Again, which I, I only had from that sheet, so that I felt there was quite significant information. Also how the drug itself worked that it, that it, I think it kills off certain white cells, in your body so it, to sort of suppress the immune system to a certain extent. So it was useful to know what the drug was and how it was working yes. |
