Interview 14
Age at interview: 66
Brief Outline: She had a stroke due to a hemorrhage aged 60, which caused left paralysis, spasms, central post stroke pain (CPSP) and depression. Medication' bendrofluazide (blood pressure), simvastatin (cholesterol), fluoxetine (depression), gabapentin (CPSP).
Background: Is a widowed retired legal secretary with no children. Ethnic background' White/English.
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This woman had a stroke at the age of 60 she is now 66. The stroke was due to haemorrhage in the brain caused by high blood pressure. She had previously been unaware of her high blood pressure and urges others to get theirs checked.
Her stroke caused paralysis in her arm and leg and she had intensive rehabilitation in a stroke unit to get the use of her arm back and to help her to walk. She found it helpful to set and work towards goals during her rehabilitation, for example, working towards going out of the hospital for a coffee. She continued to set and work towards goals when she got home and has been able to achieve things like doing the garden and going to the shops on foot or on the bus.
She is now able to walk and use her hands, however the main problem that she has been left with is chronic central post stroke pain which she feels in her leg. The pain can sometimes take over her life. She has tried different medication but has had problems with side effects with one type and lack of effectiveness with another. She finds the most helpful thing is to keep her legs warm or to have a warm shower. She has attended a pain management clinic but has still not found the solution for her pain, however, she never gives up hope.
She attended a stroke group through the hospital which she found very helpful. She feels that there should be more support available for people as they leave hospital as she found it difficult to adjust.
Her friends and family were a great support after her stroke. She also got a lot of comfort from her dog who is a constant companion.
Her stroke caused paralysis in her arm and leg and she had intensive rehabilitation in a stroke unit to get the use of her arm back and to help her to walk. She found it helpful to set and work towards goals during her rehabilitation, for example, working towards going out of the hospital for a coffee. She continued to set and work towards goals when she got home and has been able to achieve things like doing the garden and going to the shops on foot or on the bus.
She is now able to walk and use her hands, however the main problem that she has been left with is chronic central post stroke pain which she feels in her leg. The pain can sometimes take over her life. She has tried different medication but has had problems with side effects with one type and lack of effectiveness with another. She finds the most helpful thing is to keep her legs warm or to have a warm shower. She has attended a pain management clinic but has still not found the solution for her pain, however, she never gives up hope.
She attended a stroke group through the hospital which she found very helpful. She feels that there should be more support available for people as they leave hospital as she found it difficult to adjust.
Her friends and family were a great support after her stroke. She also got a lot of comfort from her dog who is a constant companion.
Find sex less enjoyable because of the numbness on one side of her body.
Find sex less enjoyable because of the numbness on one side of her body.
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So I think although it can be a satisfying sort of relationship, I would say that it's not quite the same as it used to be. You don't have the same sort of feelings. I must say everything works more or less [laughter] as usual but I, just from personal experience, I don't feel that I'm taking part in it, in the actual, when we're actually making love, I don't feel as if I'm really taking part in it. I feel that my partner is getting the pleasure out of it and he's certainly making it all work and I'm there but I'm not really having, it's very difficulty to describe, but I think it's probably that I don't feel as involved as I used to feel and I think it is because you don't have the same sort of feeling. There is a bit of your body that, that's not working, you know, you, you can't respond, I think, in quite the same way. So I would say that there are probably people after stroke who do possibly have great problems in that direction, I don't know, but it, you know, that would be quite a normal feeling, I think, if, you know, if other people do have problems. I think that would be something that, you know, something not to worry about because I think it is something that probably happens.
The left side of her body went numb and she was unable to speak. Her speech recovered when she...
The left side of her body went numb and she was unable to speak. Her speech recovered when she...
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She was hoisted onto a commode and eventually taken to the shower by a nurse which was a great...
She was hoisted onto a commode and eventually taken to the shower by a nurse which was a great...
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Everything was extremely difficult because I wasn't mobile at all. I mean, you really, when you've had a stroke, you're just a dead weight and so they had this hoist which they, and they put me on to it and I was hoisted out of the bed onto the' I can't think of the word [laughter] now, that is something that happens even now, 7 years on, I can, my memory can just, my mind just shuts down completely and I can look for a word but the word won't come and so I can't tell you [laughter] I can't tell you what this word is but it was a portable toilet and I was lifted on a hoist onto the portable toilet and that was certainly a lot easier than the bed pan.
But I was very lucky. There was a lady, a nurse in the hospital who'd actually worked in rehabilitation and she seemed to understand that I found things very, very difficult. She was Australian, but she was a very, very nice lady and I said that I felt I hadn't had a bath, I hadn't had a shower, I felt awful. It, it's a horrible feeling. You just feel very unclean and as if you don't want people to come near you because you feel you must smell and, and everything must be awful. So she really did understand and she said, 'I'll find some way to help you' and she found a chair with a hole in the middle and she got the hoist and she hoisted me onto this trolley chair thing with the hole in the middle and she took me to the loo, actually a proper, a proper toilet, which was absolutely, I can't tell you the feeling and she obviously understood and this apparatus just went straight over the top of the toilet and because I was sitting in a hole, which was absolutely fine, that was really good and so I was actually able, I felt, I can't, well, I can't describe to you how I felt. It was, it was absolutely wonderful.
And then she also understood that I felt unclean and she said, 'I'll be able to wheel you in this trolley contraption down to the shower room and I think I can get you under the shower'. Oh, well, it was absolutely, absolutely marvellous and she did just that and I just stayed on this, this, this contraption and she wheeled me in, turned the shower on, I had a shower. It was absolutely wonderful, it really was.
Took amitryptiline for central post stroke pain but experienced side effects and now takes...
Took amitryptiline for central post stroke pain but experienced side effects and now takes...
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She feels that having a stroke can take away your confidence and that you have to build it back...
She feels that having a stroke can take away your confidence and that you have to build it back...
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Stroke takes away all your confidence completely. That is one of the things definitely. It takes away your confidence completely. You have to learn to build up your confidence. It takes a long time. I don't think you ever regain full confidence completely. No. You're always wary of things, you're not sure about anything, even just going for a walk, you don't know that you're not going to fall over or you're, something's going to happen. You're scared.
The one thing they tell you, that scares you a bit because when you, before you leave hospital, they say to you, 'Now you've got to, you've got to walk. It's important that you set yourself goals so when you get home and you start to walk, do a little walk, a little bit one day and then the next day maybe do a few more steps. But always make sure that if you're going on a walk that's a little bit longer, make sure there are seats so that you can sit down.' That scares you a bit because you're sort of thinking, 'Oh dear, you know, I'm not going to be able to go anywhere where there are no seats, you've got to have seats everywhere, you've got to sit, always be able to sit down'. That is scary and so going for a walk suddenly becomes a big thing. I miss walking. I think more than anything I miss walking. I can't walk very far and I miss it. Having a dog I think is a really good thing because I had to go out every day, even if it's just a tiny little walk down the road, I've just had to do something and that has made me push forward. I feel, in company, I feel' I don't know how to describe it but this, it's this feeling of confidence. Whereas once upon a time I would have been able to stand and feel quite OK, quite confident about everything, I'm not any more. I'm thinking all the time, 'Am I going to be able to stand here? Will I be able to sit down? Is the pain going to be really bad? Am I going to start perspiring?' Everything. You're thinking all these things all the time. So complete lack of confidence really. I don't think you ever get that back. I think that is one thing that goes completely. You're very aware that you're physically abnormal.
Her stroke was caused by high blood pressure but she had not had her's checked before the stroke...
Her stroke was caused by high blood pressure but she had not had her's checked before the stroke...
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They were trying to get my blood pressure down and the dose of losartan that I was having obviously wasn't really doing the trick so I went on to bendrofluazide, which is a water tablet as well as blood pressure and gradually, I mean, they checked me, they used to check my blood pressure all the time there in the rehab, I suppose because you're having physio and you're doing all sorts of things. So it was checked all the time. They did have problems with getting it down I know. It seemed to be a big problem and since I've, since I've been out of hospital my doctor has always said that it was my responsibility to keep my blood pressure checked and that's something that I told in hospital, friends came to visit and I said, 'Well, I've never had my blood pressure checked, I've never felt any need to have it done' and I said, 'That is something you should all go and do immediately, get a blood pressure check' because it's like a sort of silent killer. You don't know, it just creeps up on you and if you don't have checks, you don't know, so I said and every, and everybody was going to rush home and go out and get blood pressure checks, which I just think if a very good thing. I think they, it's something that should be sort of impressed on everyone.
In the hospital they were given more responsibility for remembering their medication. She now...
In the hospital they were given more responsibility for remembering their medication. She now...
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And then gradually they took you through and the next stage was that they put the drugs in the drawer in your little unit beside your bed and that drawer was always kept locked and you put the key on the other side of the unit. And so every night they changed then to night time, so you had your meal in the evening and then you were put to bed and then you were told to take your, take your drugs. So you took the key, you opened the drawer, you took your little pots out and you took your drugs and you put the pots back in the drawer and you locked it and most, most of the time you went to sleep. But I did wonder how they knew that you'd taken the correct amount of pills every night. I mean, lots of people could have just gone to sleep and forgotten to take their pills and I stayed awake one night and it was quite in the early hours and the nurse came in, unlocked the drawer, took the pots of pills out, went away, brought them back later on and put them back in the drawer and locked the drawer, put the key back. And I worked out obviously they checked the pots to see how many pills were missing each night, so they knew whether you'd taken your pills or not. So that, that was really good and of course putting you in charge of your pills then makes you more independent so when the time comes for, for release and if you do perhaps live on your own, it's much easier for you to know what, what drugs you're taking, why you're taking them, you know, and you have to know exactly remember to take them.
Taking, taking drugs, I find remembering, I don't know if other people have this problem but I now take quite a lot of pills every day. In fact, I take about 20 pills a day, some of them are spaced out through the day and I find I can take my pills, I have a certain amount of pills that I take at breakfast time and I set those out the night before and I take another set of drugs at night before I go to bed and I set those out. But the ones that I take every, every 4 hours during the day, I find those really difficult and I don't know if anybody else will be in the same situation but it's really difficult to remember. If you're going out somewhere, you're in company or you go out to dinner or you go out with friends or whatever, you suddenly look at the clock and think, 'Oh my goodness, I should have taken those pills 2 hours ago' and of course you've forgotten all about it. So I find that really difficult. Writing it down helps during the day if you're at home. It really helps to write down that you took one at 10 o'clock and the next lot will be due 4 hours later, so you can write it on a piece of paper, put it in the kitchen, put it down wherever you are, so that you pass that piece of paper and it does remind you. If you're going out, I've found now, although it doesn't always work because it's difficult, I take a tiny little alarm clock and I take my pills and I turn the alarm on for 4 hours later and if I’m out somewhere, the alarm goes off and hopefully I’m going to take my tablets. So that is another way of getting round it but I do find that time is difficult taking tablets. That is a problem.
She explained that since her stroke she has had her blood pressure monitored and had her...
She explained that since her stroke she has had her blood pressure monitored and had her...
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She was quickly encouraged to try to wash and dress herself and was surprised how much she could...
She was quickly encouraged to try to wash and dress herself and was surprised how much she could...
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So in each little ward there were 2 beds and there was a basin and taps and the first morning I was in there, they wheeled me up to the basin, because we were all in wheelchairs and we obviously couldn't move at all, so we were wheeled everywhere and we were wheeled to the basin and the first, the first morning we were washed by the nurse who said, you know, 'Just try and, I'll try and get at all the bits of you that I can' [laughter] and then about, I think it was probably about 2 mornings later, we were wheeled up, I was wheeled up to the basin and then you were left on your own and the nurse said, 'I will come back in about 20 minutes but in those 20 minutes I'd like you to try and sort out how you're going to wash yourself with one hand and you're in a wheelchair and I'd like you to clean your teeth'.
Well, it's quite amazing actually what you can do. I found out that if I stuck the toothbrush in my mouth, I could open the top of the toothpaste and I could squeeze the toothpaste onto the brush, I could then put the toothpaste down and I could take the brush in my right hand and I could clean my teeth and I could also get my flannel and I could manage to wash the top half of me but I also wanted to wash the bottom half of me as well and so, somehow, I can't really tell you how I did it [laughter] but I did. I managed to get my right leg over the, the arm of my wheelchair, so that I was able to, to wash the bottom half of myself and I really felt quite pleased that I'd done a fairly good job and so things like that and we were left alone at night when we were told to put on our nighties and we had to do that on our own and the nurse went away and we were left there to struggle with a nighty [laughter] which actually now, when you think about it, it seems so easy doesn't it, to put a nighty on but with one hand and no feeling on one side of you and to get a nighty over your head [laughter] and down is, it's a very, very difficult thing but you felt really quite proud of yourself. I mean, sometimes you got it on inside out [laughter] and it took quite a while to do it but, and that was really how they tried to make us independent.
She wanted to be able to get to the shop on her own so she set herself a goal of taking the bus...
She wanted to be able to get to the shop on her own so she set herself a goal of taking the bus...
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Well, sorts of things that you can't do. Now, after my stroke, I couldn't drive and so friends were really, really good. They gave me lifts to supermarkets, they helped me with shopping and everything and then I thought, 'Well, you know, this is, this is got to stop. I've got to become more independent.' So I got a bus guide and I'm very lucky because there are 2 bus stops at the bottom of this road, one for coming back and one for going that way and I looked up the times and I thought, we've got a, we've got a shopping centre very near us which contains big stores, a supermarket and a very well big well known chain store and I thought, 'Right, if I can get down there, I can do my shopping, I can look round at the clothes, I can buy myself something to wear' and so getting on the bus was horrendous because you have to get up steps onto the bus but I found that the bus driver was really nice. Everybody was so helpful and he said, 'Just take your time' when he was sitting, you know, in his seat where you actually go up to pay and he could see that I had a problem and he said, 'Just take your time' so you see, when I got on, actually got up the steps and inside, everybody sort of made way for me and I sat down and I got to the shopping centre. I actually did some shopping and I bought myself something to wear and I waited for the bus to come back and of course, I'd got this bag and I'd bundled everything into it and was holding it with my good hand, very wobbly.
Anyway, the bus came along and I went up the steps with my bag and there was an old lady [laughter] just inside. I mean, she must have been about 90 and she said, 'Come on dear, I'll help you' [laughter] I thought, 'Oh my goodness', you know, there's this dear old lady, years and years older than me, helping me. And, I did that a few times and I felt very proud of myself. I felt I was independent and then I set myself a goal for walking and we've got a shopping centre which is probably about 10 minutes, 15 minutes walk along, you know, when you can walk normally. But on the way, there's a bus shelter with seats inside and there are some stone walls along the way as well and then when you get farther on into the shopping centre, there's another bus stop and there's another seat. So I thought, 'One day, I'll make it to those shops' and I did. One day I made it. I sat at the bus stop for about a quarter of an hour, to calm myself down and I made it a little further on and I sat on a wall and I got up and I made it to the next bus centre, the bus stop and the seat, I sat down. I went in a shop and bought things and I came back the same way and I did the same thing. I stopped and I sat, I walked and then when I thought it was really bad, I just stood where I was and I didn't move and then I continued walking and I, I'd done it. I'd made it. I'd made it to the shops on my own and I was getting to feel, and then of course, it was after that I started my driving and I, that was the real big thing, you know, I was independent.
The first time she stood was in front of a mirror with two physiotherapists either side to help...
The first time she stood was in front of a mirror with two physiotherapists either side to help...
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Because when you're normal, you've got complete balance, you know, you don't wobble around, you just walk, you're completely normal. But after a stroke, you, you've got no sense, you've got no balance, you've got no central point, so you have to learn how to stand up and see where the sort of central point is. You've got to get your balance somehow and you've got to learn how to do that and it's really difficult when only one good leg, you can feel one leg, you can't feel the other one, so you have to look down and make sure that foot is level. So you're standing on two feet equally, you can see that in the mirror, so you have to watch what you're doing. And so you learn to do that and you learn, it takes a long time but you learn to stand without actually wobbling all over the place and so you then stand with one person at the side of you and then you learn to stand on your own and you've actually, you're actually standing there without wobbling in front of the mirror, looking at yourself and that's really great.
And they, and you know, it's all sort of, you go through all the stages and then you have to, they have a long sort of walkway and it's got rails on either side and you can hang on to the rails and you have to learn how to put one foot in front of the other. A long, a very long process. You work, gradually you work up to being able to go up this walkway, which is about, oh about 15 feet long I should think with these big rails on either side and it sort of it's a sort of shiny sort of wooden floor and you just learn gradually to take one foot in front of the other and then one day you're actually able to get right up this, the length of this walkway. But then of course, you've got support, so when you come away from there, it's another thing to actually walk on, you can't, you can't walk on your own. You can't imagine really how it is not to be able to walk. You can stand but you can't walk and so you have to learn with one person either side of you to walk all over again and it's quite amazing when you take your first step. It's just absolutely thrilling to think you've made one step, it sounds ridiculous but I'm sure everybody that has been through all this will understand exactly what I'm saying and then you take your first steps, you take a little walk and I can remember. It was my party piece when all my friends used to come to visit when I was first able to take a few steps on my own.
Was taught to use the analogy of putting her good leg first for going up to heaven and her bad...
Was taught to use the analogy of putting her good leg first for going up to heaven and her bad...
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She felt very vulnerable and frightened at being home and thinks her husband did not understand....
She felt very vulnerable and frightened at being home and thinks her husband did not understand....
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Now again, my husband couldn't understand that the day I came home I should have been absolutely overjoyed because I was home but I think it's something to do with a feeling of insecurity. You're very frightened that you're going to have another stroke and that you haven't got nurses around you. Whereas in hospital, you feel very safe. I mean, there were a couple of times when I did think I might be having another stroke and they were there immediately, the doctor came you felt very safe. But immediately you come home, you are on your own and it's a very frightening experience and I think if you are told that you wouldn't be excited to be home and it takes a long time to get yourself into the right sort of way of feeling, I think that would help lots of people. And, unfortunately, this little group we were going to set up, unfortunately as my husband died, I wasn't able to, to get more involved in it, which I, it was a great shame because I think that is a very good idea. I think it would help lots of people.
It's important to have something to look forward to and to set yourself goals to work towards, no...
It's important to have something to look forward to and to set yourself goals to work towards, no...
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Was initially encouraged when a woman who had had a stroke came to talk to her in hospital but...
Was initially encouraged when a woman who had had a stroke came to talk to her in hospital but...
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How did you feel, you know, that they'd done that, that they'd brought somebody to see you'?
I think perhaps that was wrong. I mean, I understand why they did it and I, I'm not really criticising them because I think they felt that I couldn't talk to anybody. Talking was very difficult for me in those first few days. I could talk but it actually sounded as if I was permanently drunk I suppose. It was very slurred and I found it difficult to get the words out and so I think talking to somebody who actually stood there looking quite normal, I thought, 'Well, you know, I shall be like that in a couple of days' and of course it doesn't work out like that. I think they wanted to, I think they wanted to encourage me and because they saw that I felt so helpless, I think they wanted to give me some sort of, some sort of hope I suppose and so they produced this lady who was going home in the hope that it would make me feel better. Whereas in fact when I found out that I wasn't going home, it certainly made me feel an awful lot more miserable. So, but I think they had my best interests at heart. It's just that, you know, it was a bit of a shock when I found out that I wasn't going to go home in a few days, so that was not so good.