You mentioned throughout about information. What’s important to you about getting information about stroke?

Well, for instance, when I had when I first discovered I’d got post stroke pain, I discovered that the occupational therapist that was treating me at the time had never heard of it and I don’t think the GP I was seeing at the time had ever heard of it and I only heard of it because I asked for information about frozen shoulder and the information, the booklets, the very good booklet that the Stroke Association sent me about frozen shoulder was mainly about central post stroke pain. I think frozen shoulder is part of the whole thing of it and incidentally that only happens if you’re not in a stroke unit and the nurses where you are don’t realise that if your arm isn’t laid in a particular way at night when you go to sleep and you lie on it, you will get a frozen shoulder but there are hardly any stroke units and so that would be something useful to know in case you go into hospital [laughter] because a frozen shoulder with central post stroke pain is the most terrible pain. It’s the most terrible pain I’ve ever had. You can’t get away from it because you can’t lie or sit or sleep in any position where you can get away from it. So the only thing you can do is resort to very, very strong painkillers but nobody’s going to give you those forever and it can go on for a long time, you know, 5 or 6 years although it won’t be as bad all the time. It’ll, it’ll get better gradually.

Do you know what area of the brain that it affected?

Well, the only thing I, I know, I mean, my left side is all affected and then this particular part that causes the central post stroke pain which they used to think was quite rare but research in the 90s showed about 1 in 7 people have, have it when they have a stroke, especially if you’re under 60. I was 2 days under 60 [laughter]. One of the places is also, I think it’s the same person, I can’t remember, it’s at the back somewhere it causes me not to recognise new faces and also I can’t navigate so I can’t drive any more but I can’t navigate for my husband and I can’t navigate on simple things like if I go into a ladies toilet in somewhere unfamiliar, I don’t know which way I’ve gone in and which way to come out [laughter] and like my eldest son has moved since I had a stroke and I don’t know my way round his house at all. And, oh yes, the faces one was very weird and difficult. That was discovered the first day I was in hospital because I had doctors coming to talk to me who had spoken to me the day before and I didn’t know who they were at all but it didn’t affect anyone I knew before. I recognised everyone I knew maybe 40, 50 years ago but all new faces I can’t recognise at all. So what I have to do is I have to do things like thinking well, has this person got, are they wearing something unusual, and also I’ve always been very good at recognising voices and I’ve got even better at that. So that’s one of the things that helps me with that but I don’t think anything can be done about it.

Right. Well, I take something called Asasantin retard which is a blood thinner which has never given me any problems, any side effect. I didn’t have that initially. I had 2 tablets that contained the same thing. One was aspirin and one was something else but when I went to see a stroke consultant that I asked to see, he put me on to that simply because when you’re on a lot of medication, it’s easier to have one tablet instead of 2 but when I’ve been in hospital, I’ve always found a problem because none of the pharmacies have ever got it in stock. So I make sure now if I go out, I always have at least one day’s box of medication with me so that I can take them.

You’ve talked quite a lot about your husband and I was wondering what sort of impact has your stroke had on your relationship with your husband?

Well, I, in some ways it’s brought us closer but in some ways, it’s been very difficult. One of the first things that I can recall was that in my left side, my stroke side where I’ve got this central post stroke pain [laughter] I can’t bear anybody touching me either on my bare skin or like on top of my clothes and so I did find myself so often saying to him, ‘Oh, you know, don’t touch me, get away’ and so… any kind of intimacy has not been, not been on the cards at all and of course, it, it coincided conveniently possibly [laughter] with my husband getting… oh, I’ve forgotten what it’s called. Diabetes. And so we weren’t, he wasn’t able to have sex and I wasn’t interested and we, then that’s how it’s continued. He did, on the advice of a friend who’s a GP, he did get some tablets once but neither, of us were all that interested and weve just, we found to my amazement [laughter] that were just not interested any more and so it’s not something we miss.

I mean, I miss, it’s very difficult to explain. I miss being able to cuddle up to anybody but that’s, that’s not a psychological thing. That’s because of how my, my body feels, you know. What happens when you’ve got, when you’ve had a stroke, well, this is how it’s, it feels to me, it feels as if you’ve got half a dead body, maybe you’ve had an accident and half your body’s got sliced off and then somebody’s stuck it back on because it’s there and you’re learning to walk on it like it might be if it was an artificial leg but it’s, it’s not there right. It’s, it’s just, I mean, it’s not there correctly. It’s as if this horrible accident has happened and somebody’s stuck half a body back on to me but it’s not mine and it doesn’t connect up with anything and so if I’m thinking like getting back into bed in the morning if I, if I’ve got up in the morning and I’m thinking of getting back into bed with my husband and snuggling up, it’s not like it used to be because that half of my body can’t snuggle up to anybody any more. I’ve only got this half and that half is OK, that half is just the same as it was before but [ooh, beg pardon] it’s too overwhelmed by the left side. It’s as if the left side were actually much bigger than the right side. It’s as if maybe my hand and my arm are alright but the rest of my body’s dead because although I can see and feel logically that it’s actually only half my body, it doesn’t feel like that because it’s like, it’s like a dead weight and, and it’s a dead weight that can’t be comforted.

I would say get in touch with the Stroke Association and Different Stroke because they have lots of wonderful information and read as much as you can and don’t listen to what an awful lot of people say even for example nurses in the hospital because if you’re not in a stroke unit, they won’t have been, they won’t have had, oh I can’t remember the word. They won’t have learned to look after stroke patients and a lot of their information won’t be any better than what you’ve got. Try and find a stroke group. It can be useful. I’m, I’m sure it’s useful to talk to other people who’ve had the same experience and Different Strokes, for instance, they do stroke groups that are exercise classes as well and we had somebody wonderful doing the exercise class but unfortunately she hurt it back and it folded up. If you can’t find another stroke group near that you can get to and there are quite a lot around, hmmm, oh yes, I know what I was going to say. Try and if you don’t already know someone who’s disabled in some other way, try and get to know other disabled people because you’ll discover you’ve got an awful lot in common, even if they haven’t had a stroke and it’s much, it’s much easier then for people who’ve, who have maybe had quite a few serious things wrong with them and you can laugh about what you’ve got. You can laugh in all sorts of ways, whether it’s where you’re going to be buried [laughter] or all kinds of things and avoid like the plague [laughter] people who make you feel worse. That is so important and I think you’ve got to keep that in the back of your mind because, unfortunately, they keep popping up all over the place [laughter], even where you’re not expecting to find them. You think you’re in a group, like for instance in a church, where everybody’s going to be very sympathetic and helpful and knowledgeable and, and it’s not like that and it can really bring you down if you’re with people that make you feel worse and you know, it’s not legal to bash them over the head [laughter].

But then I did have an occupational therapist [coughing] at my local hospital when I came home and she initially was very good. She came to the house but again the second time she came, her husband had had some very, very serious disease like cancer and when I said I was it made me feel very depressed to have, to not be able to do things and I think I started weeping. I got a lecture from her about how did she think, how did I think her husband managed, hadn’t I better pull myself together, etc. And I was very upset. I didn’t say anything to her at the time but when she came last week, the following week with a student, [laughter] I told her off about it. I said it was completely out of order, she shouldn’t have said anything like that to me. So subsequently she did, she did keep coming to see me or asking me to come down the hospital and she used to take me out for coffee and things like that and we used, I used to walk a little bit on the, only not on flat field. And then she just disappeared into thin air a couple of years ago. I haven’t seen anyone since then.

What happens when you’ve got, when you’ve had a stroke, well, this is how it’s, it feels to me, it feels as if you’ve got half a dead body, maybe you’ve had an accident and half your body’s got sliced off and then somebody’s stuck it back on because it’s there and you’re learning to walk on it like it might be if it was an artificial leg but it’s, it’s not there right. It’s, it’s just, I mean, it’s not there correctly. It’s as if this horrible accident has happened and somebody’s stuck half a body back on to me but it’s not mine and it doesn’t connect up with anything and so if I’m thinking like getting back into bed in the morning if I, if I’ve got up in the morning and I’m thinking of getting back into bed with my husband and snuggling up, it’s, it’s not like it used to be because that half of my body can’t snuggle up to anybody any more. I’ve only got this half and that half is, is OK, that half is just the same as it was before but [ooh, beg pardon] it’s too overwhelmed by the left side. It’s, it’s as if the left side were actually much bigger than the right side. It’s as if maybe my hand and my arm are alright but the rest of my body’s dead because although I can see and feel logically that it’s actually only half my body, it doesn’t feel like that because it’s like, it’s like a dead weight and, and it’s a dead weight that can’t be comforted. I used to have body massage quite often before I had the stroke but I’ve only had one since then because being massaged on my left side is just not worth the effort. It’s worse than nothing because it’s a constant reminder that all this dead flesh is, is stuck there and because it’s a constant reminder of that, it makes me be quite uninterested in the right side of my body being massaged.

You mentioned throughout about information. What’s important to you about getting information about stroke?

Well, for instance, when I had when I first discovered I’d got post stroke pain, I discovered that the occupational therapist that was treating me at the time had never heard of it and I don’t think the GP I was seeing at the time had ever heard of it and I only heard of it because I asked for information about frozen shoulder and the information, the booklets, the very good booklet that the Stroke Association sent me about frozen shoulder was mainly about central post stroke pain. I think frozen shoulder is part of the whole thing of it and incidentally that only happens if you’re not in a stroke unit and the nurses where you are don’t realise that if your arm isn’t laid in a particular way at night when you go to sleep and you lie on it, you will get a frozen shoulder but there are hardly any stroke units and so that would be something useful to know in case you go into hospital [laughter] because a frozen shoulder with central post stroke pain is the most terrible pain. It’s the most terrible pain I’ve ever had.

How does your vision affect you when you’re, say, out and about?

My vision?

Mmm.

Well, it’s not too bad now. Initially, oh, within a couple of weeks I just stopped walking into a really nasty parking sign about this level, well like where you’re standing, about that level. Fortunately I had a friend with me and she pulled me away because it was just going to hit me there and then trees often are a problem but because I’ve got used to it now and a hospital sign was a problem because in one of the big hospitals round here they’ve got these signs sticking out along the corridor but I’ve got used to, if I’m anywhere where trees are now, I know I can’t see properly out of my left eye and so I tend to get hold of them with my right hand and then sort of take myself round a bit.

So, oh course, I can’t drive anymore. I’m not allowed to drive and if I’m reading, and this has been a special problem when I’m singing, I can’t see the first letter sometimes or the first word and so I sing the wrong bit [laughter] and also when you’re, when you’re, when I’m trying to sing a part, I can’t I can’t find pages well enough, so I’ve just given up singing with that choir. I just sing in the church choir and I just sing the, the main parts, I don’t do a descant or anything. It’s not affected my reading I don’t think. Oh well, only things like reading for music because normally when you’re reading a book or a paper with something written all over it, you I suppose, I don’t know, you just adjust to it. Well, maybe I have adjusted to it. It’s difficult when I’m trying to find things because I’ve also lost some of my central vision and so that’s difficult and we haven’t got things filed very well [laughter] in this house, which drives me mad. I used to work in a hospital and in a psychology department and it was very badly filed when I went there and I made it all absolutely beautiful and I want to do that at home but weve got a filing cabinet but weve just discovered it’s got no key [laughter] So were going to have to try and get one, so I hope that will help. Of course, I do knock things off sometimes. Yes. I do knock things off and they do tend to be liquids but I don’t seem to do that as much as I used to so then I suppose I’ve got used to it and of course I get used to not putting things in the kind of place where I know I might be likely to knock it off.