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Juliet - Interview 07

Age at interview: 69
Brief Outline: In addition to her formal career, Juliet has had a range of voluntary jobs such as Chairman of the Preschool Playgroup Association. Juliet was also employed as an Ofsted Lay School Inspector. Juliet is an avid silver surfer and thoroughly enjoys online shopping and writing emails. She has had rheumatoid arthritis for about 15 years and has also been diagnosed with diabetes, both of which interfere with her sleep.
Background: Married, two children, retired Ofsted School Lay Inspector

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Juliet often experiences very disturbed sleep, largely as a result of her rheumatoid arthritis. This disease causes her a lot of pain and discomfort and she finds it difficult to stay in one position during the night. Although she has a special bed to help with her sleep, Juliet can find herself waking up three or four times in the night. But rather than lay in bed and try to get back to sleep, Juliet finds the best strategy is to wake herself up fully, have a hot drink and perhaps watch television, go on the computer, or read a book, until she feels ready to try and get back to sleep again. Juliet doesn’t usually have a problem getting to sleep, but finds staying asleep during the night is the main issue.

 
Juliet’s physiotherapist recommended she have a sleep during the day, but Juliet is loathe to do this because she feels it might interfere with her night time sleep even more, and she doesn’t like to have set daytime routines, so feels that a nap would not fit into this. Occasionally, though, Juliet does fall asleep in the chair in the afternoon, usually if she is watching television. If this does happen, Juliet feels this is for the right reason, that is her body is telling her she needs a nap.
 
Whilst Juliet does have quite difficult sleep, she tries not to worry about it and feels that if she has a particularly bad night, she is likely to be able to make up for it on subsequent nights.
 

Juliet hasn’t had a full night’s sleep since her diagnosis with rheumatoid arthritis 12 years ago...

Juliet hasn’t had a full night’s sleep since her diagnosis with rheumatoid arthritis 12 years ago...

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A good night’s sleep would be one where I never woke up literally from start to finish, which I certainly enjoyed in my youth, when I literally went to bed and slept eight hours or whatever and go up feeling really good.
 
Yes and what do you get now then?
 
I get now pretty interrupted sleep but I do deal with that because there is only one way, is to deal with it. But I mean obviously as you get older you are up spending pennies in the night. I mean I expect that anyway, but I do get quite a lot of pain from my rheumatoid arthritis. And so I wake up with it. I probably wake up about three or four times in the night. Not always, not always, but I never have a night when I don’t have at least if not two breaks and when I wake up, I probably go to the loo, come back again and I won’t lie there in the dark, well I put the television on, or I read a book or if I really feel like it I will get up and have a go on the computer and then I get myself tired again and then I will go back to bed, and this does have the result sometimes that may be we get up quite late in the morning, because if I do drop off, but you know, that is the way it is now.
 
And how long do you think has it been like that?
 
I haven’t had a direct night’s sleep that I could count on really since I was diagnosed with the rheumatoid because you get the pain and you get it all the time. It is difficult to remember right back to the first time when I was diagnosed, but I was always conscious of having at least one interruption and that has got more and more interruptions as time has gone on.
 

Juliet has a special bed to help with her Rheumatoid Arthritis and tends to have very short,...

Juliet has a special bed to help with her Rheumatoid Arthritis and tends to have very short,...

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I mean I am not completely housebound at all. And it is strange I would have thought in the logical process of life that going out for a day and struggling round a National Trust building which I love, I don’t go up the stairs, but they have got all these albums and things, wonderful. I would have thought that I would come home and sleep very well at night. I never do, the night I have been out, I get a lot of pain in my legs. It takes a couple of nights, and then I will probably have a good night. It doesn’t seem to work the way…
 
It might tire you out but …?
 
It tires you out but it causes me more aggro. Yes that is right.
 
What about when you are away. Does the same thing happen if you are on holiday or whatever?
 
Well in fact we don’t take conventional, we are a very odd pair. We have never been actually that keen on holidays. We used to take, obviously the children away. But we are not that bothered. We are going up to [place] at half term to see our son and we are staying in a Travel Lodge then, but the other place I go away mainly, or we go away, is to this friend of mine who has been unwell this year. She and her husband have a cottage in Somerset. And we are going down there in September with two old friends who we have met in the last year and I sleep there actually sitting on the sofa, well the stairs, I can’t get up the stairs. They are huge you know, sort of slate stairs and I actually sleep quite well there. And I do find that, this is one of the reasons why I am not too bothered about holidays, but three or four days of that and I have had enough and it is not the rest that everybody says holidays should be. I have always been a bit like that. Well of both us actually have always said a week, two or three days, a week plus two or three days was more than enough. I am a bit of a home bird I think really and it is all to do with familiarity I think.
 
Have you never slept better when you have been away from home?
 
No I don’t relax. I am not very good at relaxing although at that cottage I do sleep really quite well. And when we are on holiday at our friends, I mean they are our age as well, so none of you are getting up at the crack of dawn any more. No one is rushing off too the office, so it doesn’t really matter. Well we will have a plan and we will go out for a day and we will do things, but I do find going out is really quite stressful if it is a whole day out. Using disabled, toilets for the disabled which is one of my big, big grumbles. About the way they only put rails and they don’t, mine here is lifted up it is on a platform and I don’t need anything to help me get off it because it is raised. And you know, the constant sort of finding a car park, finding a … I have got a disabled parking sticker, all that sort of thing is actually quite stressful and doesn’t necessarily make for a restful time, but I do sleep on that sofa at the cottage very well, because it is very comfortable and… 
 
 

Juliet describes how her physiotherapist suggested she take a nap in the afternoon to help her...

Juliet describes how her physiotherapist suggested she take a nap in the afternoon to help her...

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What about napping, do you have a nap during the day?
 
Well that is an interesting one, I will find sometimes, when I have dropped off to sleep in my typing chair, but I mean I don’t just do it, but I will feel it coming on. And about a year ago I went over to the [hospital] and I had a very bad spell last summer and the RA consultant said I think you need to see the physio and I went over to see her, and I was referred over to the hospital to see the physio and the OT and both of them made some helpful suggestions about exercise and what have you but it was the physio that said to me, she said I think you need to sleep in the afternoon for half an hour. And I said well do you really, because I said I am very loathe to get into this, because I think once I have got in to it I will need to do it every day. And I said a) I am loathe in case it takes away the edge at night and makes you know, makes it longer or more difficult to get off and b) if I do feel tired during the day and there is nothing on, I will actually say oh I will just sit in the chair and then I find I have dropped off for a little while, so I don’t make a conscious effort to have a nap.
 

Juliet sometimes sleeps badly because of pain from her rheumatoid arthritis, and mostly she will...

Juliet sometimes sleeps badly because of pain from her rheumatoid arthritis, and mostly she will...

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I think it certainly did when I was newly diagnosed but I am a fairly old war house now at this and I sort of try not to let it affect me. I am very well monitored by the Health Service. We are seen every six months, either by a consultant or a junior doctor or quite often the specialist nurse and they know their stuff and quite often I go over there for my monitoring check and we just sit and talk. And a lot of these things crop up then, and they do a chart about on the level of one to so and so how are you in the morning and that sort of thing. And I have tried, it depends what I am doing, I definitely get a bit twitchy if actually I have got to get up early for a reason like to go somewhere. Like to go somewhere and going out for the day or something like that when I do go out. But I take a long time to get dressed and it is just the sort of mental attitude I think really. But I certainly, if I have had a bad night, I try to say well, you know, that was a bad night, I will have a better one tonight sort of thing and get on with the day because you do what you have got to do really.
 
So would you change anything you would during the day?
 
Occasionally I have had to cancel things and say well I really haven’t been feeling up to it, but not that often I don’t have it. Equally I have, I lack confidence when I am out walking. I am fine in my own home I know where I am going, but I am not good out at all. So going out is quite stressful, but I won’t, you know, I won’t cancel it because it is stressful, I will only cancel it if I really don’t feel up to it, because I have had some falls and you lose, you know, you lose that confidence. 
 
 

The pain from Juliet’s rheumatoid arthritis sometimes wakes her up in the night and she occupies...

The pain from Juliet’s rheumatoid arthritis sometimes wakes her up in the night and she occupies...

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I was listening to what you were saying about if you are having a bad night you have ways to deal with it, you have strategies you do, and you mentioned putting the television on. Going on the computer. Do you have a computer in your room?
 
Oh yes, well my husband sleeps upstairs now because I don’t… the main bedroom is upstairs and there is no way I can, you know, impose that on him, so I have my, I have my special bed in my study. We are very lucky here. He has got an office and I have got a study and I have my bed. It is my cosy little den and it is untidy and I love it and so it is all in there, within two or three seconds reach. So it is all there. I have got the television in there, the computer in there and my CD player in there and I just use whatever and it usually, whatever I decide to do will send me off to sleep again.
 

Juliet knows that if she wakes up in the night she will have to wake herself up fully before she...

Juliet knows that if she wakes up in the night she will have to wake herself up fully before she...

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So you wake up and do you try and get back to sleep straight away?
 
No, the minute I wake up, I get out of bed, go to the loo, which is often, if I don’t need to I will still go. I will have a drink perhaps and I thoroughly wake myself up actually, because I will not go and lie in or sit up in bed and try and pretend to sleep if I can’t.
 
So you are choosing to wake yourself up?
 
Yes. Well it is a strategy as far as I am concerned because I find that then actually I will get into a better mode of sleep and I will go back and I do go back but sometimes it takes very long and sometimes it takes… I just know when I am ready to get back into bed. It is difficult to describe it.
 
Does it vary then from night to night?
 
Yes. It can vary.
 
What is the shortest time it takes you, and what is the longest?
 
I would say the shortest probably, out of bed, have a drink, probably put the television on, and see what is on. And if it is boring it will send me off to sleep in about fifteen minutes.
 
 

Juliet, who has rheumatoid arthritis, sleeps in her own bedroom so that she doesn’t disturb her...

Juliet, who has rheumatoid arthritis, sleeps in her own bedroom so that she doesn’t disturb her...

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I was listening to what you were saying about if you are having a bad night you have ways to deal with it, you have strategies you do, and you mentioned putting the television on. Going on the computer. Do you have a computer in your room?
 
Oh yes, well my husband sleeps upstairs now because I don’t… the main bedroom is upstairs and there is no way I can, you know, impose that on him, so I have my, I have my special bed in my study. We are very lucky here. He has got an office and I have got a study and I have my bed. It is my cosy little den and it is untidy and I love it and so it is all in there, within two or three seconds reach. So it is all there. I have got the television in there, the computer in there and my CD player in there and I just use whatever and it usually, whatever I decide to do will send me off to sleep again.
 

Juliet remembers that her children slept well after the first few weeks, and believes they were...

Juliet remembers that her children slept well after the first few weeks, and believes they were...

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What about when they were younger, the children were younger?
 
Well I think probably no I think they slept well. They were good sleepers. They were both easy babies when they were brand new, you know, we had the first twelve, fifteen, sixteen weeks but they were definitely easy children and we all slept well. I think you are probably inclined to be more aware of the fact that you have got two children and we did have a fascinating spell when my son, the second one, he was a bed wetter, and he really was a bed wetter. And I took him down to the doctor and I was told, oh well you know it must be stress. Well it wasn’t stressed he was just one of those, a man, a boy that’s, and we took him up to the hospital, we were referred and we were given the buzzer, the buzzer contraption and [my son] even slept through the buzzer I remember then it was quite a traumatic period because eventually, actually it worked very quickly, but in order to get the buzzer to make even more noise, we had it on an empty biscuit tin and we had quite a few periods during that, but that was the reason for it. You know, it was not, you probably didn’t allow yourself to go into a deep sleep in case you were needed. But I never really had any other kind of problem. It was either a stress or a worry or perhaps may be when my Father died and …but they are the normal family things that you would expect.
 

Although Juliet did have her sleep disturbed at night by pain, she also felt that hot flushes...

Although Juliet did have her sleep disturbed at night by pain, she also felt that hot flushes...

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I think it is not always the pain, I get, I often get very hot at night and I try and keep… and then I get cold. So you tuck the bedclothes at bit, you know, a bit like, you know, the old hot flushes, you know, you toss the bedclothes off and then you are cold. It is quite often with diabetes as well having to go to the lavatory. So it is not always the pain, but it is a lot of the time. I am conscious of it. And I am conscious of having quite a low level of sleep before I actually wake up. It is almost as if I take a long time to come round, you know.
 

Juliet not only suffers pain from rheumatoid arthritis, but also has to get up to go to the...

Juliet not only suffers pain from rheumatoid arthritis, but also has to get up to go to the...

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I think it is not always the pain, I get, I often get very hot at night and I try and keep… and then I get cold. So you tuck the bedclothes, a bit, you know, a bit like, you know, the old hot flushes, you know, you toss the bedclothes off and then you are cold. It is quite often with diabetes as well having to go to the lavatory. So it is not always the pain, but it is a lot of the time. I am conscious of it. And I am conscious of having quite a low level of sleep before I actually wake up. It is almost as if I take a long time to come round, you know.
 
So when you wake up in the morning after a night like that, you don’t feel… how do you feel?
 
I feel pretty yucky actually, but then that is expected with RA and I have learned now how to deal with that. I don’t suppose you ever really feel rested is the word. And I do take a long time to get moving, but that is part of the illness. I knew that from day one, but as I have got older, it has got more severe.
 
So you were diagnosed in 1996?
 
Yes, in the October, yes.
 
Before that how long did you have the diabetes or was it…?
 
No the diabetes wasn’t diagnosed until four years later. So I was having excellent sleep, you know, I was a straight forward really like I have been all my life. 
 

Juliet was loath to nap during the day, as suggested by her physiotherapist, because she didn’t...

Juliet was loath to nap during the day, as suggested by her physiotherapist, because she didn’t...

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Well I just, I suppose somebody might say ‘oh well you think it is synonymous with old age’. It is not that. It’s that I feel if I got into that sort of body rhythm, and I was out for a day, you know, I might sort of feel tired when I wanted to do something else and be with people and what have you, and I don’t like these set routines that people can get into. I didn’t disregard it and I did say to her, okay yes, and I do fall asleep. In fact it happened yesterday as it happened. I had been watching the athletics because I enjoying watching that, and I think all those people, that dreadful climate in Japan, and I suddenly sort of felt quite tired and I just sort of turned the television down and closed my eyes and I had gone, but equally there are days when I am busy in there and it varies, and so I don’t like routines that you can’t get out of really.
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