Trust your instincts.

Trust your instincts. If you’re not happy with some, something, trust it, you know, do something about it. I look back now and wish when I’d had these minor episodes that I’d had gone to the doctor and sort of said, you know. So, sort of, trusting your instincts or the
That’s an interesting point that you raised about those little episodes because I think, you know, I’ve heard people say that it just seemed a bit trivial, they didn’t really realise that

That’s right.

So are you saying actually it doesn’t matter how small it is if you’ve got a, a concern that

Well, I think the best thing to do, if you have several incidents like that is to write them down because then you’ll find that people say, Well when did this happen Well I couldn’t say, it was all on guesswork.

I mean, the biggest shock was having brain damage, because I was told that because it was a TIA that I wouldn’t have brain damage. And I had headaches and I went to my GP and again like I said before, they’re very good my GPs and they referred me to have a scan, a CT scan and that’s when they picked up I had brain damage. And I walked in to see the consultant for the results and bless him, on the computer was a picture of my brain and he said, There’s your brain damage And I thought, Hmm, let’s have a little bit of sensitivity here, shall we

You know, There’s your brain damage. it’s not too bad, it’s only about that much I don’t give a shit, it’s still brain damage.

Difficult, yeah.

Yeah. don’t point at it and have it on the screen when you come in.

So I suppose that’s the kind of thing you mean when you talk about the, the
Yeah.

bedside manner. Kind of thing.

Let, let’s sort out a little bit of empathy. Yeah.

it’s important, isn’t it?

Yeah, it is because it lasts the rest of your life.

Because I can still hear him say it, you know. I don’t think they quite get their head around that when you first have a traumatic experience what is said to you take with you to the rest of your days.

You know, I just feel if it happens again there’s, you know, not an awful lot I can do about it really. So you can’t keep on worrying about it. I think you go through periods, when it first happened you question everything. You know, Will I be safe doing this? Will I be safe doing that? Can I eat this? Can I eat that Until in the end I thought, Oh, sod it You know.

I really wanted to. I wanted to write about my experience just to offload, just for myself.

On my computer. But I couldn’t do it. I wouldn’t do it, I should say, not couldn’t. I wouldn’t do it because I couldn’t go through it anymore. It was too difficult.

Hmm, so you really wanted to try and put it to the back of your mind rather than keep
Yeah.

going over it?

I suppose so, which you know, there was only so much, I mean, it’s been over a year now, there was only so much you could keep going round and round and round and round and not really get any further with it, you know.

But I did want to sort of like write about it and how my, my actual emotions at the time which were raw. Why did it happen to me? There’s the anger. And of course being a counsellor I’m quite lucky in a way because obviously you’re dealing with emotions anyway and it sort of like, it’s, it’s, if you could see it as sort of like the same as a bereavement because it’s a loss.

And that’s, and so of course I know the sort of like the anger and then the eventual closure of it all. I don’t, and I wouldn’t know, I wouldn’t say I’ve got to closure yet.

Is counselling something that you think might benefit people if they’ve had that kind of experience?

Definitely, yeah.

Yeah?

Definitely. Yeah.

In the sense of just being able to kind of go through it with somebody and think about how they feel about?

Yeah, to, to offload and say, you know, to say the things that you wouldn’t normally say to other people, like, This isn’t fair

Why me You know, you’ll always hear that, Why me You know. Why not? It’ll make you a stronger person at the end of it, you know.

Because I do sort of think, Well, I’m buggered if I’m going to let this beat me

I don’t know what tests they were. Oh he’d, that’s right, he got, he, he’d started to, he started talking to me and I didn’t want to talk. I didn’t want to talk and I kept looking at my husband to answer for me. But he sort of like, No, I want to hear it from you So that’s when I, because I knew I still sounded like I was slurring and it was just sort of like really, really strange
You know, you’re slurring your words, what is happening? And then I just said to him, because he said about having a stroke, and I, and I can really remember turning round and just saying, But I’m just a baby, I’m only 48 And that was the real sort of like first time it was like, I’m 48. I’m 48

Is that what really hit home to you?

That hit home to me then. Why?

Why? You know, why? Why had I had a stroke? So then that was the next series of tests to find out why I had had a stroke. So he was just sort of he gave me, oh that’s right, he got me to do this with my hands
.. and I can remember feeling bloody irritated because I had to, he wanted me to do this and I can remember thinking, I just can’t do it with my left hand. I can do it with my right but it was like that with my left hand. It was really difficult. And then he told me to touch my nose with my left hand and I went to my chin and I thought, This is bizrdquo; it was bizarre experience because it’s like, you know, you don’t even think about it but having to do it and you miss and you think, That’s ridiculous So it was all very confusing.

What about your family, your wider family, how did they react to your

They came into hospital to see me. Both my sisters are nurses. My one sister said to me, Oh it looks, oh I can still see the remnants of your stroke Which just made me want to embed my fist into her face.

And what was she meaning by that? What was she
My face was still, still dropping.

Right.

But none of my friends or my husband would say anything. So I was ignorant to the fact. Because I had a very slight limp when I get very tired and also I have a muscle spasm in my left leg for a long time
Right.

.. which has only just gone.

And did it just feel hurtful when, if somebody pointed those things out?

Unbelievably.

Yeah?

You know, Oh, you, I can still see the remnants of your stroke because your face, your mouth is down one side Well, I had no idea. I had no idea. Why tell me? I’m not going to look in the mirror. Which is then what I did was look in the mirror and I started, you know, smiling, is everything smiling, you know, correctly, and so on. So, yeah.

I think, I look OK, this is what used to really irritate me because people would look at me and say, Ah, you look so well, Claire And I’d think, Well, yes, maybe I do but then, you know, it’s not something outwardly that, you know, it’s like anything else, the unseen disability really, isn’t it?

When people if it doesn’t bleed it doesn’t hurt type of thing.

I know some people have said to me that, you know, people will say, How are you but actually they don’t really want to hear?

Yeah.

About that, and it’s, did you find that?

Oh I love, oh no, I love it when people say, How am I because I’ll tell them and then they wish they hadn’t asked.

My husband was absolutely fantastic from start to finish. And I don’t know really what would have happened if I didn’t have my husband here in all honesty because he was supportive. He was here for the, because he was allowed time off work to be with me. And that was very reassuring.

Did, would you say, did it affect your relationship in any sort of adverse way at all? Or has it all been quite positive in that sense? I mean, some people have said it brings them together more, some people have said it’s been really difficult and it’s caused us problems?

Well I, I think in view of the fact that [husband] had had cancer the year before sort of brought us together then I had a stroke, well I don’t think you can get any closer [laughs].

You know, we just, we, you know, we’re close because we’ve both had traumatic illnesses.

So I mean, we’ve had a few funny times on it when I sort of said to [husband] it’s all right for you, you know, you had your prostate removed. I’ve still got to take tablets for the rest of my life So we’ve had banters but it’s more bemusement than anything, you know.

And that’s helped us go through things. His experience of going through cancer, you know, and all of that helped me because it, we both had life-threatening illnesses.

I stayed off work for a, two, three months, something like that. Stayed off work.

How did you feel about that aspect, about not being able to go, to be at work and, was that something that you, you were, you were relieved not to have to go to work feeling the way you did, or did you, would you have preferred to have

I couldn’t have gone to work, I felt very, very vulnerable And very, I’m very funny about my neck. You know. I don’t like, somebody put their arm around me the other day and sort of went like that and I could feel myself getting really anxious without even thinking, I’m getting anxious It sort of was there already.

We stopped off at the shop in the morning before we went to work to pick up some breakfast. I was quite excited because I was due off I was due to have a few days off work. We picked up a colleague from work. Got into work. And sat down all of us in the office chatting away. And I took a bite of my sausage roll. And one of my colleagues was telling a joke and I took a bite of the sausage roll and then I had almost like an out of body experience. That’s probably about the best way that I can describe it. And my colleague sort of said, Well the joke wasn’t that funny And then another colleague said to me because there was about five people in the office at the time, and another colleague said to me, Stop doing that Clare you’re frightening me And that was the sort of thing for me that frightened me because I knew something was going on. But I didn’t quite know it was you know, like I said an out of body experience. And then we’ve got a unit downstairs that’s for detoxification, so this nurse is there. So they came, they came up the stairs. And I, I can remember wanting to act normally because they kept looking, because everyone kept staring at me. And I had a cup of coffee on my table. And I went to pick it up with my left hand and where you automatically can pick up a cup of coffee I couldn’t do it. So I just wasn’t fazed by that, I just picked up it up with my right hand. And but I just didn’t feel like I, I wanted a cup of coffee then. And then I had some sausage roll in my mouth and my husband who was in the room with me at the time, took the sausage roll out, literally out of my mouth because I couldn’t swallow. And then one of the nurses came up and I know there were lots of people coming in at this stage. And they gave me some aspirin, 300 mg of aspirin. And then a nurse came to me and took my hands and said to me, Squeeze as hard as you can with your hands And I can remember thinking, I’m squeezing really hard’, but she was saying, Well she’s not really doing it very hard And I can remember thinking, I’m in the room. He’s saying that in the room as if I’m not there and I am. So it was a very weird out of body experience for me that. And then after that somebody asked me if I had a headache and it was at that stage that I had a really bad headache in the right side
But it was the left side that I had my TIA from. This is, I’m just going from what I can remember which is quite patchy I suppose. And then they called 999 and the ambulance came into the establishment.

I mean, the biggest shock was having brain damage, because I was told that because it was a TIA that I wouldn’t have brain damage. And I had headaches and I went to my GP and again like I, I said before, they’re, they’re very good my GPs and they referred me to have a scan, a CT scan and that’s when they picked up I had brain damage. And I walked in to see the consultant for the results and bless him, on the computer was a picture of my brain and he said, There’s your brain damage And I thought, Hmm, let’s have a little bit of sensitivity here, shall we

You know, There’s your brain damage. it’s not too bad, it’s only about that much I don’t give a shit, it’s still brain damage.

Difficult, yeah.

Yeah. don’t point at it and have it on the screen when you come in.

So I suppose that’s the kind of thing you mean when you talk about the
Yeah.

bedside manner. Kind of thing?

Let, let’s sort out a little bit of empathy. Yeah.

it’s important, isn’t it?

Yeah, it is because it lasts the rest of your life. Because I can still hear him say it, you know. I don’t think they quite get their head around that when you first have a traumatic experience what is said to you take with you to the rest of your days.

The fact that you’re taking preventative medicines now, does that not, does that give you any confidence about the future or do you still feel quite uncertain about things?

Well it’s only 20, it’s, it only actually is, because when my husband and I went away for, the early part of the year on our honeymoon I’d actually forgotten all my tablets and I was, I was quite surprised at how almost aaah, panic struck that I was. Where are my tablets And I phoned my consultant because he’d given me his mobile works number and explained to him and he said, they’re 20% stop you having a stroke

I think my cholesterol was six point something which is higher than the average, it’s what they want I know, but it’s not extortionate really.

Did you get put on any drugs ..

Yes I did.

anti-cholesterol?

Ah, yes, I got put on simvastatins. Statins. And they gave me terrible headaches.

And did you carry on taking the tablets or did you stop?

I’ve stopped.

Right.

And then the doctor went mad with me because I stopped. Because they were just giving me really bad headaches.

Were they able to provide you with an alternative or not?

The one doctor didn’t. The other doctor did. They lowered the dosage.

I think then when I had a Doppler scan my neck he said to me, Had, have you had a trauma And I was quite taken aback and I said, No And he was like, Are you sure And I said, Yes And then I was trying to think back as to have I had a trauma, no. And he said, Because your carotid artery is damaged, is completely occluded So I can remember thinking, Why? Why is that? You know, I’ve had no trauma to the neck And then the only think I could think of was going back, because he said it was in the last week he thought this trauma was. But about a few months prior I was in the shower and I’d had a bit to, too much to drink, I was a little bit inebriated, and I went to get out of the shower and I slipped and I fell and as I fell I brought the curtain pole down on top of me and across my neck. And I can remember calling out for my husband and him coming and saying to him afterwards, I’m surprised I’ve done such little damage to myself in view of the fall And then weeks after that I started to sort of experience headaches and also I lost the vision on my left side. But I, it, it was really strange because it happened so quickly. I just kept putting it down to tiredness.

So I feel that I did have clues that something was going on, that I was having a, you know, there were symptoms prior to my stroke
Yeah.

But I kept putting them down to tiredness, to this, to that but, when in actual fact I wish now, because I can remember, I had like almost like an electric shock in my brain and I can remember thinking I should write this down because I’d lost my vision temporarily. It was all very, very odd. And I just thought, Well I’m over tired you know. Work’s quite, you know, heavy at the moment And so I didn’t really think any more of it. But then it was when I’d had my stroke and I started to think back and eventually the consultant said to me that it was a biological accident. And they never did find out why I had a stroke.

Was it called a stroke or a mini-stroke or TIA? How was it

It was a TIA. But the thing is that I was left with brain damage so that was where it was sort of like, because I did recover very well
But I was left with a small patch of brain damage to which I was extremely, I took very, very badly. You know.

And what’s the outcome of that then in terms of the future for, is that something that’s going to improve or that’s permanent?

I feel that, I mean, it’s permanent damage because it’s brain damage but I feel that other parts of my brain have compensated because how I was then to how I am nowI said to friends on the weekend that I was doing this interview with yourself and the fact that, you know, I felt that I, the way I was before I had come back if you like.

And do you remember how, what the doctors or whoever it was that gave you the diagnosis, I mean, how did they distinguish between a TIA and a full blown stroke?

Because they, because it had happened within a certain amount of time.

Right.

And because it had happened within 24, I’d recovered within 24 hours they put it down to a transient ischemic attack.

So then the ambulance men came in and my colleague was sat next to me and I didn’t know what he was doing but unbeknown to me I was paralysed down my left side but I didn’t realise, I had no idea whatsoever. And he was holding me up. And then they got me into the ambulance and they set me up with an IV drip and everything [coughs] and I can remember one of the bosses sort of like coming to the front of the ambulance, the back of the ambulance and saying, you know, Take care And I went to wave at him and do that with my left hand and it was like my brain was saying, Move and it wasn’t moving. And then I said to the ambulance man, What’s the matter with me And he said, You’ve had a stroke But I think I’d guessed, the fact that the holding of the hands and I was weak down the left side. But the one thing that was so handy was they’d done a spate of those commercials for the Stroke Association and I think that had so much bearing on the speed my sort of care, because it was just shortly after all these commercials and the commercial had a tremendous impact, because a lot of people have said, Oh you were exactly like the commercial

Of course outwardly I didn’t know what I looked like. But apparently my face had dropped and I was paralysed on my left side.

But inwardly I just thought, What is every, what are they staring at? They frightened me the most.

So you felt disconnected from what was going on?

Absolutely. That was the out of body experience, yeah. Very disconnected.

But it was frightening as well because their reactions were frightening me. Yeah, definitely.

And how long did it take to, for you to get, to be able to communicate back again?

I was able to say when they want, you know, when they said to me, Do you want a drink? I was able to say you know, It’s a bit early for that. And that was minutes after the stroke. But I think I was so sort of like almost fight or flight, that’s when the adrenalin had kicked in, because I was frightened now. But mainly by their reactions than what was going on for me.

You know, I think that can be, you see people’s faces and, Stop dong that Clare, you’re frightening me. Well that was one of the worst things anyone could have said because it was doing what, I couldn’t say to her, Doing what?

Was it called a stroke or a mini-stroke or TIA? How was it

It was a TIA. But the thing is that I was left with brain damage so that was where it was sort of like, because I did recover very well
But I was left with a small patch of brain damage to which I was extremely, I took very, very badly. You know.

And what’s the outcome of that then in terms of the future for, is that something that’s going to improve or that’s permanent?

I feel that, I mean, it’s permanent damage because it’s brain damage but I feel that other parts of my brain have compensated because how I was then to how I am nowI said to friends on the weekend that I was doing this interview with yourself and the fact that, you know, I felt that I, the way I was before I had come back if you like.

And do you remember how, what, what the doctors or whoever it was that gave you the diagnosis, I mean, how did they distinguish between a TIA and a full blown stroke?

Because they, because it had happened within a certain amount of time.

And because it had happened within 24, I’d recovered within 24 hours they put it down to a transient ischaemic attack.

It was a TIA. But the thing is that I was left with brain damage so that was where it was sort of like, because I did recover very well but I was left with a small patch of brain damage to which I was extremely, I took very, very badly. You know.

And what’s the outcome of that then in terms of the future for, is that something that’s going to improve or that’s permanent?

I feel that, I mean, it’s permanent damage because it’s brain damage but I feel that other parts of my brain have compensated because how I was then to how I am nowI said to friends on the weekend that I was doing this interview with yourself and the fact that, you know, I felt that I, the way I was before I had come back if you like.

And do you remember how, what, what the doctors or whoever it was that gave you the diagnosis, I mean, how did they distinguish between a TIA and a full blown stroke?

Because they, because it had happened within a certain amount of time.

Right.

And because it had happened within 24, I’d recovered within 24 hours they put it down to a transient ischemic attack.

The one thing that I wanted, that did drive me bonkers was and, and understandable was that the consultant kept saying to me, Lifestyle changes, lifestyle changes. You’ve got to make lifestyle changes. That was what he said to me from the moment I got there to the moment I, I left. Which I can understand and appreciate that I was almost being brainwashed into having lifestyle changes. But I thought, Well, this isn’t fair. I’m not obese. I haven’t got high blood pressure. You know.

What kinds of lifestyle changes was he recommending then?

Giving, giving up smoking, taking more exercise reducing cholesterol in, in food and this, that and the, I think my cholesterol was six point something which is higher than the average, it’s what they want I know, but it’s not extortionate really.

You know, it’s not just about having the, the stroke. Because I can remember we went shopping shortly after having my stroke and I looked at all the foods, cheese, because I love cheese. All high cholesterol. You know, and don’t’ do this and don’t do that and be careful with this, don’t overdo it on that and that, it was wearing, it was upsetting. You know, and it just felt, you know, you take a, a step back and think, Well, you know, I’m 48, I’ve had a stroke, I’ve read enough from the information on, on the internet to know that there, it’s usually a precursor to another stroke, you know, which wasn’t a nice thought. And then you think, What would, what, what if I was doing this And then in the end you, I burnt myself out basically because, you know, that was my way of dealing with it, you think about what would happen if this happened and what would happen.

I had almost like a desperate feeling to get everybody I knew around me because I’d had a stroke I didn’t know what was going to happen next. I had no idea. So friends came down to see me. I was just, felt very insecure, very frightened, I didn’t know if I’d have another, if I’ve had one and they don’t know what caused it then I could have another one.

So it was fear?

Yeah.

Really.

Yeah, basically.

And uncertainty?

It was uncertainty, yeah. Yeah. And then walking around, you know, would I go, because the feeling of paralysis when you’ve got strength and then you suddenly experience paralysis – is quite traumatic, because coming down the stairs I’m still funny even now about coming down stairs. Weird that. I mean, I could be walking anywhere but just coming down the stairs still now makes me feel very frightened.

I’ve been, both actually, I’ve been to my GP and outpatients. And my GPs have been absolutely fantastic, they really have.

I mean, obviously they’d had a letter from the hospital to say I’d had a stroke and when, when I went to see the GP he, he came out of his office to come and meet me because obviously he didn’t know how badly I’d been affected.

Oh that was good. So they

Yeah.

He call, did you call you in to actually have a chat with you and find out how things were? Or did you make an appointment?

I made an appointment to go and see him.

Right.

Yeah.

OK.

But he was very empathic. Very.

Were you admitted to hospital? Did you stay in or did you

I didn’t want to stay in. I begged the consultant to let me out. But he wouldn’t have it. They wanted me to lie on my back for 24 hours I think it was, it was something to do with fluid, fluid to the brain
they wanted me to have fluid to brain so they refused me to be lot home. And they said, If you lived on your own you wouldn’t be allowed out anyway But luckily I was married, so…

You just stayed in overnight?

I had to, yeah. They wouldn’t let me out.

And I can remember wanting to act normally because they kept looking, because everyone kept staring at me. And I had a cup of coffee on my table. And I went to pick it up with my left hand and where you automatically can pick up a cup of coffee I couldn’t do it. So I just wasn’t fazed by that, I just picked up it up with my right hand. And but I just didn’t feel like I, I wanted a cup of coffee then. And then I had some sausage roll in my mouth and my husband who was in the room with me at the time, took the sausage roll out, literally out of my mouth because I couldn’t swallow.