How about your confidence in your health?

I’m a lot, a lot more confident now in my ability than when I first came out from hospital but that was a learning curve because when I first came home I was very weak and very, very tired and I used to sleep an awful lot and that’s something I’ve meant to say throughout, throughout the whole stay in hospital after my stroke, I slept for a huge amount of time and I needed to sleep. It was a total exhaustion that wipes you out, not like a normal sleep process where you go to bed and you have your, your 8 hours and you wake up refreshed. I woke up feeling very tired and was constantly tired and the more I slept, the better I felt and so when I came home, I incorporated sleeping into my daily recovery, so I would do a very strict physio and then make sure I’d have an hour or an hour and a half block where I’d, you know, take the phone off and make sure I closed the front door and locked it and I would go to bed and sleep because I would know that I’d feel so much better from that, than having stayed awake. But the sleeping thing really shocked me because I’ve never slept that, I’ve never thought about sleep, it’s just a means to an end but I was so, so very, very tired and I can remember coming out from hospital and feeling I would never have a normal activity, a normal day because, to get up to make a cup of tea would exhaust me for an hour and you would, the sweat would run off me and physically my muscles would, would ache and I was just so, so very unfit. The stay in hospital had made me very, very unfit and the stroke obviously. It was a number of different issues but the tiredness was something that I was absolutely shattered and people used to ring and call round and say, ‘Is she asleep again?’ Nobody could understand, not my family or my friends that when I came home I slept so much and I think that must be an intrinsic part of my recovery and it’s certainly helped me and without that sleep, I couldn’t, I couldn’t have got well as quickly.

Being tired?

Yeah. It was a bit like having the inside of my head lined with cotton wool, for the first couple of years so I was in a kind of vague fog and tired. I used to, used to need about 12 hour sleep. I mean, I was seriously, tired. Tired out. The whole thing was tiring. I think my body was shocked, and, I think for a lot of stroke survivors, I’m not sure, but I think they can stay like that. But I do remember an appointment with the, my neurologist where I went to see him where something had happened where the fog had gone and he looked at me in absolute amazement. [Aeroplane overhead] He could not believe his eyes. He said, ‘I can’t believe my eyes’, he said, ‘I never expected to see you come out’ because he said almost, so many people don’t. He said, ‘I’m absolutely amazed because you’ve, you know, I don’t know what the neurological description for it is but basically you’ve come through the neurological fog of a stroke, which lots of people don’t do.

I’m still supposed to walk a mile a day. I’m a bit naughty actually because I’m suffering at the moment from something called neurological fatigue which a lot of people when they’ve had strokes suffer from, which is extreme tiredness and it’s very, very difficult. I suppose nobody really knows why it’s caused, what’s causing it. I suppose the brain has been working so hard to rewire itself and to get itself back to normal, that it’s getting tired. I can only assume that.

I’m virtually back to normal apart from this terrible tiredness that I get nowadays . In fact, I’ve recently retired that’s the reason I retired because I, I am suffering from neurological fatigue. I can’t, I can’t work a full day. I always was going to retire at 61. I retired 3 months earlier than I would have done. So I’ve taken early, early, early retirement.

Was there, you said earlier that there was maybe a problem with your memory to start with?

WifeYes, it was, he wasn’t the beginning when he had a stroke, nearly three weeks, you know, one day it was the saddest time for me my, because my brother was asking, ‘Where is your child?’, ‘I don’t know. He says, ‘You don’t remember the child, you don’t remember me It was the saddest time. After three weeks, slowly, slowly he was improve.

I also, I get very easily confused which I didn’t used to, confused about dates and times and I’ll try and remember things and I’ll write them down the wrong date or time in my diary. I do that a lot, a great deal. Not something I never used to do but now I seem to do it all the time. I have to keep checking up that I’ve done it properly.

Are there any things that you find that are helpful to, you know, to help you remind yourself of dates?

Well I have so many appointments these days with various doctors and so on. At the beginning of the week, I think like Monday, I mean, this week for example, I’ve got, like Monday I’ve got the doctor, Tuesday I’ve got the dentist, an appointment I made a long time ago, Wednesday were going out I’d got an acupuncturist and today I’ve got this interview. So that’s this week and next week I’ll have to go and study what I’ve got. I know I’ve got something on Tuesday of next week and I’ll try and remember what else I’ve got, so I try and get the whole week in my head and then I won’t fix up anything else that will clash with it.

So last year I had a big page a day diary where I wrote down appointments and that was the first thing I looked at in the morning and it was the last thing I looked at night [laughter] to try and train myself to write things down because my husband would say, ‘Could you do X, Y and Z?’ and I might remember X and Y but I’d totally forget about Z and it’s very frustrating and very embarrassing to be constantly reminded. I found I found it upsetting when my daughter in particular would say, ‘But I told you that already’ and I did have a wee chat with her and say, ‘Look, I appreciate you said it before, I’m so sorry to have to ask you again but I have forgotten, please can you tell me, you know, just tell me the days you’re coming home, you don’t have to give me times or anything else, it’s purely to plan meals, shopping and cooking, nothing else. So that was very frustrating but the Brain and Spine Foundation have neurological trained nurses that [sighs] take the time to listen to your concerns and nothing is too trivial for them and I, I found that a great sense of comfort that I knew I could phone somebody up and ask advice, so they were very good.

How about maybe meeting new people?

Well, meeting new people I start, I kind of shy away from doing that. Not that I’m unsociable, I speak to people and that and pleasant but I don’t really like to do it, more so now because I’m frightened in case I come away with something stupid or they see me forgetting something and they’re like, ‘Shes just said that’ or, because I do repeat myself, not that much but I can do it and I do it without knowing I’m doing it and they would pick that up right away. Somebody that you don’t know picks that up right away. Sometimes I can’t be bothered with the hassle of overcoming that sometimes [laughter]. That sounds quite unsociable but then again theres times when things slip out in front of people like I forget someones name, which is quite common occurrence. Anybody could do that. Some people aren’t good with names, some people aren’t good with peoples faces.

Well, I am absolutely rubbish now with both of them [laughter] and it was actually my next door neighbour a couple of doors up, they’ve not long moved in and I’ve basically walked past her twice and it’s because, I’ve looked at her as well and I’ve thought, ‘That looks like that lassie but it’s not that woman. I’ve thought to myself, ‘No, it’s not, it just looks like her’ and it’s been her but I know I wouldn’t have done that before I had the stroke. So twice shes done it and I’ve went, ‘Oh sorry, I never seen you there. The second time I thought, ‘That’s too noticeable, shes thinking that I’m doing that to ignore her’, [laughter] and that’s very unsociable. So the second time I said, ‘Look, I’m really sorry’, I said, ‘But I’ve got a problem visually’, I said, ‘And I can’t remember faces’ and I said, ‘Look’ and I explained to her I’d had a stroke a year ago and that’s why it happened, I’m not being ignorant and I sometimes don’t want to tell people that but sometimes I feel it’s necessary because other things could come across ignorant if you don’t. And the minute you say it, they’re OK, quite embarrassed and I don’t like saying it because they do get a bit embarrassed but sometimes it’s necessary because, it can, whatever’s happened can be quite ignorant. But I don’t want to go out like meeting people because I don’t want to come out, I don’t want to have to come out and say, ‘This is why’ because I just want to be normal but eight times out of ten, sometimes, some things happen and I think they will come out as being ignorant or a bit, shes a bit dozy [laughter] but it’s not.

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.

I believe that can be part and parcel of having the stroke as well because her personality’s changed a lot too. I have to confess that it depends how you’re feeling how you cope with it. If shes having a really bad day and shes, I sometimes call it ‘black and white days’ if I say black, shell say white. If I say white, shell say black immediately, you know, so I do get quite a number of days like that as well and it’s, that is quite stressful, it’s quite, it hurts your heart really, you know, it’s, it can be very, very difficult at times.

When she was in the second hospital, she said she had sworn at one of the nurses, the one who was really, really nice to her as well. That upset us all because we don’t, we don’t hear my mum swearing, you know, that was so out of character it was, we were really shocked when she explained this. But reading that book was excellent, it, everything that we were worried about and upset about was in there and this is exactly the course it’s taken, the road it’s taking. So weve just got to really more or less accept it all.

Shes very flirty since this stroke. Shes, the young male nurse that she really loved in the second hospital, she flirted with him all the time and he, obviously he understood what was going on and he was excellent with her. But sometimes it can be a wee bit embarrassing. I mean, when the ambulance men came on Monday, shes, she was talking about her, her boobs on Monday and oh I’m sitting there, was quite horrified actually. And it’s weird, it’s as if, it’s as if shes young again and she thinks shes this young, lovely woman she was when she was, I think her mind takes her back to her being young. And I don’t even think she was flirty then because shes, she met my dad when she was fifteen years old and it’s not that shes had other boyfriends or anything but shes definitely flirty, definitely. If it’s a, a male, shes quite flirty with him and shell maybe say something and you know, and we find it really strange, this, but again, this is another change of personality that’s caused by the stroke which is amazing.

And so what were your, how did your stroke affect you say physically, physically and cognitively and sort of, how did it, how did it change you in a way?

It changed me because I used to be very what’s the word? Non, no, not non-committal, but no, I did, if people were doing things that I didn’t like I used to, didn’t used to say anything.

OK, OK. So
And if I didn’t, you know, didn’t like something I wouldn’t say
So passive maybe?

Maybe, and, you know if anybody was, you know, I don’t know, I can’t think of a trouble now, but well my [sighs] my son-law, well he’s not son-law, my prospective son-law, when he was staying with us I had to tell him, I’m sorry you’ll have to go Because he wasn’t working. And there were three women working and he wasn’t working and it took me two years to do, finally pluck up the courage to say, I’m sorry you’ll have to go, you know, you’re not finding a job, you’re not, you know, I, you know, we three are workingyou know, you’ll have to go home. I’m just, you knowrdquo; Now, [laughs] I’d say it.

Right.

I come out and say it.

And I don’t know why. My children think it’s much betterthat I, you know, I do it, you know, I don’t know whether it’s because I don’t think about other people’s worry. I’m not quite sure. You know, I might not, I don’t, really don’t know. But I don’t do it. So there’s that [laughs].

Is that something that you like?

Well, yeah, I mean, I really don’t think about it, there, that’s the funny thing is that it just comes out [laughs].

[laughs]

And afterwards I think, Ooh, I shouldn’t really have said that You know.

Great. So it’s like that, that filter maybe isn’t there?

Hmm. Yeah.

Initially I was very, very neglectful of my left side. If I for instance was sitting here and somebody would sit next to me on that settee and they would ask me a question, I would address my answer to you and to pass the camera to you, and they would start to get extremely jumpy about all this and wonder why I was cutting them dead.

Of course I wasn’t I was just, I was just unable to cope with my left side. I’ve done hundreds and hundreds of tests on paper since that time to try and improve my left neglect as it’s called. What they do is they give you a whole load of designs on a piece of paper and you have to cross the ones which are maybe zeros or threes or twos or fours or whatever and of course. What you tend to do is cross out those examples on the right hand side of the page and when you get the hang of it you start to cross out the left hand side as well because in the beginning you look terribly proud of yourself for having found all these twos, threes and fours on the right hand side and the person doing the test looks at you with a sort of rather sympathetic gaze and says ‘well what about the ones on the left hand side.

Well after a while you do get used to this test and you really start correcting it and you come to realise that what’s on my left side there is this, this and this but I, I’m still not too good at it, I have corrected it up to a point. I had to really work at it very hard, and I suppose that’s one of the reasons why the DVLC say’s ‘well you’ve had a stroke, I don’t know whether you should drive. How are you in the side mirror, how are you in the driving mirror indeed. Do you see things through 360 degrees and how long will it be until you do.