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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.

More about me...

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.

 

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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After my husband died, I realised that, with stroke problems, it would be very difficult to actually live with anybody and so I'd made up my mind that I had, I had absolutely no intention of meeting anybody else and living with anyone. But I did, strangely enough meet somebody outside Sainsbury's in the pouring rain. I was having problems putting my shopping in, into the car and this gentleman came along and was very helpful and we found that we had lots of things in common and we did, we started a relationship, we went out to dinner many times, which was really very nice and then it came to the point where he was going to stay overnight and I must admit I was a bit apprehensive because it's the sexual side of things is very difficult because you've had a stroke and if it has been, as in my case and lots of people that I know, it is really, one half of your body completely, it's right up, right down the middle, one half is completely numb and you can feel things on the other side and you do wonder how you're going to react. So it certainly was quite strange for me and a little bit worrying but I have to say that  we made love and I, everything really was OK but something is missing. I think you possibly don't have the same amount of feeling in, well obviously bits of you are a bit, a bit numb I suppose, so you're not going to get the same sort of feelings that perhaps you've had in other relation, well, in other relationships when you, well pre stroke time. 

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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It was an ordinary Sunday afternoon. It was in May 1999 and we'd just had lunch and washed up and I felt absolutely normal. I did not have any symptoms of any kind whatsoever and the phone rang and I answered the phone and it was for my husband and so he came into the hall and he took the phone and I came back into the lounge and it just happened just in that second. The whole of my left side actually went just completely dead and so, and I didn't have any pain or anything. It just went absolutely dead. It was the most peculiar experience and I realised I hadn't had a heart attack because there was no pain, so I guessed the next thing was a stroke and so my husband was a bit confused so I, we got a piece of paper and a pencil and I wrote down, 'I think I've had a stroke' and so he called the ambulance and I was taken to hospital and they gave me some oxygen. They gave me some oxygen in the ambulance and my speech had gone completely as well as my, as well as all the feeling on my left side, my speech had gone but when I got in the ambulance and they gave me some oxygen, my speech started to come back and when I got to the hospital, I was able to speak just slightly slurred I think, I must have sounded very drunk in fact and I was in hospital for 2 weeks and they really didn't touch me at all.

 

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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You mentioned there about things like using the toilet and were you also needing to have help with things like showering and washing and how did you feel about that?

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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I've taken various things. I started off with amitriptyline which is the most effective drug I have to say which reaches the back of the brain, which reaches the nervous system and that does have an effect but it does have side effects in that I had a horrible mouth problem. I think you get a dry mouth with a lot of this, these particular drugs but mine developed into a, a really bad condition and I had ulcers and my tongue was swollen and I found it very difficult to eat and I'd been taking that drug for 5 years when this sort of erupted and so therefore I had to leave that one behind. I take gabapentin, I take the full dose of gabapentin, which is very, I suppose is very good, must help, it's a sort of muscle relaxant because that is really one of my big problems is the fact that because my leg goes into a spasm, my brain is sending negative messages down to my left side saying that I have got pain when in fact there is nothing wrong with my leg, I know that, but it goes into a spasm, the spasm goes down into my foot and that makes walking extremely difficult because my toes tend to sort of curl up underneath and then you have to walk on, on, on your toes really and that, after 7 years, has sort of made my toes permanently bent and therefore walking is very uncomfortable. So what I do, it's really weird thing I suppose, I bind my foot up with tape all round the toes and on the base of the foot and therefore when I put my foot on the ground, it deadens the pain and if I'm going walking in the shops or something like that, I find that that will help me. That, that deadens it a bit and I can walk a little bit more than I would be able to normally.

 

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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How about your sort of confidence in everyday activities and doing things in your life? Has that been affected?

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 checked my blood pressure probably 2 or 3 times a day for those, first 2 weeks but they didn't actually do anything to me at all. I think they, for the first, I've heard this since, the first couple of weeks, I think you have to sort of stabilise so they really just leave you. I didn't have any medication at all. I had nothing. They just watched me, just kept a check and then I think I had a, I think before I left the hospital I had another scan. I suppose they just check to see how things are getting on up there, you know, whether there's any, any more bleeding or anything and, and then I was transferred to the rehabilitation unit and I was assessed by the doctor who's in charge at the unit and that's when I started taking blood pressure pills, I started losartan and then they were trying to stabilise my blood pressure because that was the cause of my stroke and obviously that is a problem. Maybe I've had for a long time, I don't know because I never went to the doctor and I never had checks, so I didn't know that my blood pressure was high because I didn't have any symptoms so it could have been something that I've suffered with for many years and never found out about. So that obviously was a problem. 

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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It, I felt that when I was in the rehabilitation unit, everything was really, worked out extremely well because there were lots of people there who lived on their own and they were going to be released from hospital and they would go to an empty house and very difficult to deal with their drugs and to deal with everything. And so they took us through stages, so when you first arrived, at breakfast time we were given our drugs. I mean, most of us were on blood pressure tablets, muscle relaxants, that sort of thing and so we were given our pills in a little pot every morning with our breakfast, they came round with the pill pusher [laughter] and handed out these little pots of drugs for everybody so you knew exactly and they told you what you were taking and what they were for and that was really good and then after a little while you were told that you wouldn't get your drugs at breakfast unless you asked for them and so you had to put your hand up and ask for your drugs and then you were given them, given your drugs. 

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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And I've always had obviously since my stroke, I've had blood, blood pressure problems and my doctor has increased my losartan in the last few years because my blood pressure sort of went up and then, then stabilised and it's still sort of, you know, it's on the blink still, it's not good. It's not, it's not close enough to worry about having a stroke or a heart attack but it, it just does sort of pop up, you know, it's not really good. So it is my responsibility to have my blood pressure checked regularly, and so I do. I make appointments at the surgery and I get it checked every 3 months is really vital. I mean, I think you can become obsessed and have it checked too often so I, they say that every 3 months, you should definitely get it checked and so that's what I do. Sometimes if I'm a bit, if I don't feel so good and I think, 'Oh dear, perhaps there's something wrong', I'll make an appointment and get my blood pressure checked, just in case it is something but you don't really have any symptoms, or at least I didn't, so I'm not, I'm not'

 

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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The cleaning and that sort of side of things is a very difficult thing to deal with and perhaps I can explain that when I went to rehabilitation, the rehabilitation unit, there were a few men who'd had strokes and there were, I think there were about 16 of us in this unit and probably about maybe 4 men. Now, I think the men found it very difficult to deal with because we, at that stage, we had to have 2 people, 2 nurses to take us to the toilet and a third one had to be there as well. Now, I think for women it's probably easier to accept these sort of things but I felt very sorry for the men. I think they felt they'd lost their dignity and it was very difficult and then, so we were, we were taken to the toilet with 3 people, 2 people, one either side to hold you and the third one to, to deal with other things and then in the mornings, with washing, again, you see, we had all these, there's always the washing problem and they tried to make us help ourselves, tried to make us independent. 

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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Tell me about some other things?

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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The physiotherapy at the rehab unit was absolutely brilliant. Every morning we were, we got up, we were washed and dressed and put in our chairs and wheeled through to the gym and they had a very nice compact little gym there. You were, because you couldn't walk, so, and you had, you, when you've had your stroke, you've lost your sense of balance completely and so they had beds that they could lower and they could raise them and there was a huge mirror, a big full length mirror and so we had to sit on the bed, on the edge of the bed so, I mean, again, you had to learn how to actually sit on the edge of the bed and you faced the mirror and then they hold you up, there's a nurse either side and you stand up in front of the mirror and you have to find your central point' 

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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Because that was another thing in, towards the end of rehab, you had to learn how to walk up stairs and they had a little staircase in this unit because everything was flat obviously so everybody could move around easily, so this little staircase right at the other end and so we used, we used to have to take it turns to go and you had to learn how to walk up the steps first of all and so they said that, 'Try and think about it as if you're going up to heaven. If you're going to heaven, you would put your good foot first. So you put your, your good leg first on the first step, then you lift your stroke leg next, get to the top of the stairs and turn round and then come down. Imagine you're going down to hell, so you would put your bad foot down first, put that down and then you'd gradually learn. Coming down stairs was much more difficult than going upstairs. Well, I thought it was anyway. It seemed, you know, you're looking down at this and you didn't think you could do it but going up somehow seemed a bit easier because you'd sort of pull yourself up somehow but going down was not so good and so you had to learn all that.

 

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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I do think that there's one really important thing and it was something that was, I was going to get involved in and then unfortunately I was not able to go on but there was a group of us that thought it would be a really good idea that when a stroke victim was going to be released from hospital, somebody who'd had a stroke and had been home for a time should go to the hospital and have a little talk with the person who was going to be released and explain what happens when you get home. That, I think, is a very important thing because, more than anything else in the world, you want to go home and when you get home, I have to say that, that is the last place you want to be. 

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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Yes. It is, I think it is important to have something to look forward to because when we come out of hospital, rehab, whatever, you're in this little world of your own. You've got to get yourself back into the real world and so you've got to set yourself goals and projects and things that happen out there that you haven't been part of. You've been, you've been away from all that for a long time, so you've got to get yourself back into that and the only way to do it, I think, is to set yourself goals. Maybe little things to start with, you know, small things and then work up to bigger things, even if it's only perhaps, I don't know, just something that you can't do in the house, maybe like hovering or whatever, that you haven't been able to do. Set yourself a goal that you can actually do the hovering downstairs and upstairs all in the same day, things like that. Start off with little simple things and then work up to bigger things, you know. Maybe something that you want to do in the garden anything at all that seems complicated to you and that you think you can't do. Set yourself a goal and work towards that, even if it's very, very slowly. I think important to, to gradually work towards it and when you've done it, you'll feel very proud of yourself and you'll be able to set yourself another goal. Maybe a bigger one the next time but you'll go on and that pushes you forward and it also, when it happens after, just after stroke, I think it gets you back into the real world and that's very important. So I think goals, yes, I would say. Really, really important.

 

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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Yes. I'd probably been in, I'd been in the hospital bed probably, I think it was about 2 days before they actually asked this lady, who'd been a patient, who was a patient in the hospital, to come over and talk to me and she'd had a stroke and they said that this lady had had a stroke and I thought, 'Well, you know, this lady is standing by my bed, she's had a stroke' and she was going, she was going home and so I thought, 'Well, you know, that's really good, she's been here a little while, she was going home and it was possible that I was going home at the end of that week' so I, I thought, 'You know, things were really not too bad' and then I was told that it would be a very long time before I went home from the hospital and that's when I think I realised that something very serious had happened to me and really, I suppose it really hit me then. I suddenly realised that things were pretty bad.

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. 

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