Interview CP01

Age at interview: 56

Age at diagnosis: 36

Brief Outline: Diagnosed with Lupus, 1983. Treatment: Regularly attends rheumatology clinic. Pain management: Pain Association Scotland Living with Pain course. Current medication: co-dydramol, prednisolone - steroid for flare-up. Past medication: dihydrocodeine

Background: Retired school secretary / housewife; married; 3 children.

Decided one night in hospital that she was not going to let pain rule her life anymore.

You mentioned earlier on that you realised that this was something you're going to have to live with, can you tell me about how you came to that decision?

How I came to that decision was I was in hospital and I had been diagnosed for maybe three years and it was one of a series of long sleepless nights, and you play everything over in your mind and I more or less lived between one flare-up and another. 

But this was probably one of the worst flare-ups I've ever had and I had been, for the first and only time I was really frightened, and I lay that night in bed and I thought about my three kids, my husband, and I thought well this is it, is this going to be me, this will be me now because there is not a cure for lupus, so you just need to get your head round it, this is you and what are you going to do? Are you going to sit there and let lupus rule you or are you going to battle to have a life, and I took the battle to have a life, that's a decision I've never ever regretted, but its actually facing up to the fact that you have this illness and that your life has changed and its acknowledging that change. 

I mean it probably comes to different people in different ways, that for me it was a sleepless night in a hospital bed and then I started my own campaign to make sure that I could live with the lupus and that it would not rule my life or anyone else's. That was the most important that it wasn't going to rule or ruin anybody else's life and I can honestly say it hasn't and it didn't, because I still do all the things I had planned to do before I was diagnosed, we still had all the years of camping and going to dances as we still do, so you learn to live with your illness, you don't let it rule you.  

I mean don't get me wrong, there are days when you are in so much pain, there would be no dinner there for anybody coming in at night, because you've hardly been able to lift, hardly been able to get out your bed in the morning never mind come down stairs and start walking about. I mean it depends on just how severe your pain can be, but on the whole I can honestly say that, that night I faced up to it, but that was three years of my life I hadn't given into it or anything but I never thought about it and that was when I started cooking batches, things like that.

Was sceptical about visualisation but tried it and was surprised to find it helped relieve the...

We used to listen to tapes for relaxation, now I was very, very sceptical of anything like that, and we, you know you listened and there was a voice and it was taking you on a journey and that was fine, and I would sit there with my eyes closed and this particular Tuesday morning anyway my thumb, oh my god if I could've cut it off I would've done it. 

So this is called visualisation and we were taking this journey through a meadow to a glass building and then we're invited into the building and up to this other glass wall where you were asked if you wanted to put all your pain behind the wall or some of your pain behind the wall and then retrace your steps back and I remember thinking now who in their right mind would say 'oh well I'll just put some of my pain behind the wall, and I'll take the rest back with me'. 

So, but that was the day we called it the miracle of [CP01's] thumb, because believe it. And I mean I could hardly believe it and yet I was the one that was suffering the pain with this thumb and by the time the visualisation exercise we had gone into it with the deep breathing and preparing and all the rest of it and we had gone on this journey and we came back again, as we just got back into the flow of a meeting again, you know, like you were so relaxed and then you just come out of the relaxed state, you come back in with your eyes wide open and I could not believe that I had no pain in my thumb. 

Describes how she copes with her flare-ups and stresses that it is important to make sure you don...

Oh well, first and foremost I think if you're having a flare-up you draw on the experiences of flare-ups in the past and you do all the things that you know will help you, like pacing yourself and relaxation or listen to music or any form of distraction at all that you find pleasurable, looking at grandchildren, photographs of grandchildren, anything like that and it depends on how bad the flare-up is. 

The first three or four days can be crucial and what you do and how you're going to react and how long this flare-up could last,  and I have always thought as long as I pace but keep myself mobile, because mobility can be very easily lost and it can take an awful lot of hard work and effort to get it back again, so I would say that keeping mobile but not strenuously, you know really cosseting yourself to a certain degree but not to a degree where you're just going to lie in bed or anything like that, I don't think that's a good way of coping.

Used to batch cook meals and freeze them so that her family always had a meal.

Something else I learned as well, see more so anybody that has a young family, and this is what I found was quite good, I used to, on my good days I used to batch cook, more so when they were all still at school because it meant that if I was in hospital they still had full meals, all that had to be done was take it out the freezer in the morning and it was ready just for heating up at night, so that was another thing that I learned to do. 

Maybe it was the only thing that I would do that day, would be cook, but that was me, I cooked that day, and I maybe changed the beds or washed the windows the following day and you definitely, over a period of time, you do accept it. I mean it still annoys me, I mean I was the type of person that if the whole house wasn't cleaned and the beds weren't made for half past ten or eleven o'clock there was something really wrong with me, but your whole outlook changes and the Pain Management Course that introduced me to the pain. 

The pacing, also had, you know I mean everybody does everything their own way, so it was, I decided then because I was in the hospital - out the hospital and it always concerned me quite a bit about my husband and the children and make shift meals that they were having while I was in hospital, and that was when I decided that was it and I would come home and I would be back on my feet and I would batch bake which I did and cook. 

And that was good and I more or less kept that up until about a year ago, well not even a year, and its just my husband and I that's in the house and still quite happy to cook two when you've been cooking for quite a few, and aye, you take the pace and that is only a kind of rough guide you know, you know do this one day and do this the next and don't reproach yourself for no being able to do too much in the one day. 

Sometimes you can do that as well and that's not very good for your morale if you start to criticise yourself for something that's no really in your control anyway, but'

Was concerned because her daughter took on a lot of responsibility although she assured her that...

Did you feel that they ever had perhaps to do more?

Oh yes aye, in the early days definitely, and I felt it, my oldest boy he was really good, the youngest was really young he was only 7 when I was diagnosed, but my daughter and my son they coped you know and I always felt as though more so my daughter her teenage years. I always felt guilty about that because she is the type of person she is very authoritative she likes to run the show, and she's very thorough in all that she does and she took over the Mammy role when I'd be in hospital or upstairs and that was the way it was, and I think the boys were more afraid of her than they were of me. 

But she assures me and she's always said name me anything that I wanted to do that I didn't do, so I've got to accept that, but I mean if you torture yourself with that it can lead to other problems, if you can't take the word of your family, by saying fine, we maybe had to do this and that but that is what families are all about and its still the case even within like daughters in law, son in law, if anything happens they all rally round, you know there's still that great sense of family within us and around us and in the extended family.  

But I definitely, that used to really worry me that I felt as though her teenage years weren't as carefree as they should've been, but she assures me that there was nothing that she wanted to do that because of me she didn't do and as she said I was 25 when I left the house to get married so it wasn't that bad a living, but you do you do feel guilty, any mother would feel guilty, be it even just for a short period of time rather than an ongoing thing.

Talks about how other people in support groups know what you are going through because they also...

What's so helpful about meeting other people through a support group?

When you meet people through a support group you know that they're going through a lot of pain, I can't feel their pain and they can't feel my pain, but even being able to talk to like-minded people is good because at least you know they've got an idea of what you're going through. 

Whereas pain can never really be described, its either unbearable or its bearable, but to actually describe the pain is a very hard thing to do and if I had a penny for every time that I've ever said, 'If somebody could just crawl into my skin for 2 minutes.' I wouldn't need to explain pain, and basically that's what it is, and when you meet other people that are going through a lot of pain, the fact that you do know what they're going through because you've been going through more or less the same. 

Maybe not joint pains, it maybe different pain from you, but the fact that you have in common is pain, and its doesn't need to be depressing about 'oh how sore I've been this week', you know, it can be actually quite uplifting, because sometimes you always see somebody that's been worse than yourself and it makes you say to yourself, 'Right come on give yourself a shake, get on with it, just go an extra swim this week and you'll not feel so bad at the end of the week.'