Ros - Interview 34

Age at interview: 69

Age at diagnosis: 69

Brief Outline: Ros was at the supermarket one day when she found herself feeling disorientated and unable to control the trolley. She felt faint and collapsed. An ambulance was called but Ros wanted to return home rather than be taken to hospital. She saw the GP the next day and was told she had had a mini stroke.

Background: Ros is divorced and currently lives alone. She has two adult children and two grandchildren. She is a retired keep fit teacher. Ethnic background' White British.

More about me...

 Ros had a headache that lasted several days and was feeling under the weather. She needed to go to the shops to get some food shopping, and whilst she was in the supermarket she found herself feeling disorientated; her left arm was uncontrollable and floppy and her speech was slurred and confused. When she arrived at the checkout she felt faint, and collapsed. The cashier called for an ambulance, however after a short while Ros began to feel better and wanted to go home rather than be taken to hospital. When she saw her GP the following day she was told she had had a minor stroke and was prescribed simvastatin tablets which she began taking immediately and has been taking ever since. Ros had a stroke two years earlier and was prescribed simvastatin and aspirin. However, she was unable to take aspirin, and was worried about the potential side effects of simvastatin so she opted not to take this drug. She now feels that it’s possible that if she had taken the simvastatin at that time she would not have had the mini stroke later on. 

 

Ros’s symptoms disappeared the day after the mini stroke, although she felt faint in the mornings for several days afterwards. Although she feels generally well now, Ros has found it difficult to cope with living alone and worrying that she could have another stroke at any time. She found it difficult to explain her heightened emotional state to her doctor who wanted to prescribe anti- depressants, but she felt that it was anxiety rather than depression that she was experiencing. She has recently been referred for some therapeutic help with her anxiety problems and hopes that in time she will be able to feel more relaxed about life. Since the mini stroke Ros has found that she is also a lot more sensitive and emotional than she had been in the past. 

 

Ros feels that people need to be more aware of the symptoms and effects of strokes and mini strokes because it can be difficult to understand and recognise. She also feels it’s important that doctors and health professionals listen to patient’s worries and concerns in order to give them the support that they need. Since her stroke and mini stroke Ros has made a huge effort to adjust her lifestyle – having lost 4 stone in weight and sold her car to force herself to walk and take exercise, she feels that there was little or no encouragement or praise from her GP to acknowledge the efforts she had made. She feels disheartened about this especially because she believes that a little bit of encouragement would go a long way to help patients feel more positive about their recovery.

 

Ros who lives alone felt that after her TIA her anxiety about having another stroke got out of proportion and for a time she worried constantly about going out alone

They were enormous, absolutely, absolutely out of proportion my anxiety of having another stroke. You know, I just used to see it all the time. I used to go out here and think, “I wonder if I’ll get to the Tesco’s without having another stroke.” Or, “Will I get back without having a stroke.” You know, it was enormous. Enormous.

 

And you couldn’t get it out of your head?

 

No. That went, for about three or four weeks I was like that. But I did go, even [laughs] desperately scared I still went. And then it, it got better.

Ros said that not knowing what is happening to you makes it feel very scary

 

You don’t know what’s happening when it happens. You, you don’t, you know, when I collapsed, OK I was ill but the first time, it was my brain, there’s something happening to your brain and you can’t explain it and you don’t, you’ve never experienced it before so it’s scary I would say.

 

To people that have not experienced a stroke or a mini-stroke it’s quite scary and you probably don’t know what, what’s happening to you. It’s unfamiliar.

 

If you’ve got a cold you know you’ve got a cold. Or if you’ve got a headache or if you’ve got arthritis you know what it is. But with, with a mini-stroke something’s happened to your brain and you don’t know what it is and it is very scary. I would say it’s very scary.

 

Ros found herself worrying endlessly about the possibility of having another episode and eventually her doctor referred her to see a counsellor to help control her anxiety

The next day I was back to myself but very anxious and very concerned that , - that I was going to have another stroke. And that’s what really controlled me for about three or four weeks.

 

I was worried, I was concerned. I was worried but I got the night, I slept all right the next night and the next morning when I went to the doctor my hand was waving, I just couldn’t control my left hand or my arm at all.

 

But I could walk all right.

 

So what sort, what were your worries and concerns at that point would you say?

 

Well, afterwards, when I came back from the doctor and I was taking simvastatin I used to go to the supermarket, which is only two minutes away from here, in my head I was imagining in, having another stroke, all the time. Every day…

 

So you were worrying that it could happen again?

 

Yes. And it was just, it was, was persistent that feeling that I was going to have another stroke. And I’m now seeing someone to help me relax, to have breathing exercises.

 

From the medical team.

 

So it’s precipitated a lot of anxiety?

 

Absolutely. I mean, silly anxieties. Everything, I was anxious about everything. You know [laughs] Everything.

 

I do get stressed over silly things, I do.

 

I see that in myself. But it’s very difficult, if someone says, “Mum, why are you getting agitated, so, stay cool, stay cool.” And I get all edgy about every, every little thing. That’s …

 

Do you think that’s been overall just your general personality? Or is it since your …

 

Oh no, I, …

 

No?

 

I wasn’t this person years ago. I would do anything. I would take, well I wouldn’t climb up a mountain [laughs] I wouldn’t do that, but as far as other things, on my own I would go anywhere, I’d go all over the country, different, abroad on my own, on the aeroplane on my own. It wouldn’t worry me in the least.

 

No. I would do any, anything and everything.

 

So that change has been around about the time when you’ve these illnesses? Or …

 

Well maybe, maybe it was a slow build up but it’s become worse. I’ve become agitated and, you know and, I don’t know, it’s not nice. It’s not a nice feeling.

Ros had a headache for a few days that wouldn't go away, and felt generally unwell but didn't know what was wrong

 

Well the first think that I noticed was that I had a headache and it went on for three days. But on the fourth day I needed to go out to get some food. I didn’t feel very well but nothing that worried me. So I went to the supermarket. I got the trolley and immediately I couldn’t control the trolley. It was, it was going to the left all the time and I was bumping into things. And at this stage I was feeling not well at all. I got myself to the till and then I collapsed at the till. And I felt, also felt sick at the same time.

 

And I was just slumped over and a supervisor called for an ambulance and the ambulance were there very quickly. I still felt sick but I wasn’t sick.

 

Ros's headache lasted for several days but she put it down to generally feeling unwell and stayed in bed thinking it would pass.

 

Just thinking back to when you had the first, the headaches…?

 

Yes.

 

… that you’d said you had?

 

Yes.

 

What did you do about that? Did you just sort of keep taking painkillers...?

 

I took paracetamol and I was in bed. Because the, the headache just wouldn’t go, it just wouldn’t go.

 

So at that point you didn’t seek medical attention?

 

No. I mean, I just had a headache that went on for three days. And if I didn’t, if I hadn’t needed food I wouldn’t have gone out on that fourth day because I just didn’t feel well.

 

Ros had been prescribed simvastatin following a major stroke, but said she didn't take it because she suffered from bad side effects

I was advised to take simvastatins by the consultant and because I’d had a very, a lot of side effects I didn’t take the simstatins. So maybe …

No.

 

...that was the cause of my mini-stroke.

 

Were you ever given aspirin? Or told to take aspirin?

 

I can’t take aspirin.

 

OK.

 

Yes, they did mention that and they gave it to me in the hospital and I was vomiting so they took it off me.

 

And, so then there wasn’t an alternative that they could give instead?

 

No. No.

 

Right.

 

I was on medication, I was on blood pressure tablets, a stomach tablet and something to help me with the, the stroke but they, the one that they wanted me to take I didn’t take.

 

Right.

 

So now of course [laughs]

 

What do you feel about that now then?

 

Well, maybe if I’d have taken the simvastatins, maybe it wouldn’t have happened.

 

Right. But you won’t, you don’t know that though, do you?

 

We don’t know that, no. We don’t know that. But since the first stroke I’ve lost four stone, my life is more healthy now because I think that you can’t depend on drugs, you have to help yourself, you have to do things even if you don’t want. I’m not a walker but I made myself go walking after that major stroke.

 

So when you said you lost a lot of weight after the stroke …

 

Yes.

 

... was that a deliberate attempt …

 

Yes.

 

...to ..

 

Absolutely.

 

.. change things?

 

Absolutely.

 

And was that dieting and exercise? How …

 

Yes, walking and giving up red meat biscuits, anything that I thought was bad for me I gave up.

 

And was that your own, at your own volition or did the doctors, is that what you were advised?

 

No, that’s what I did off my own bat. Because you have to help yourself. You can’t, you can’t rely on the drugs. You have to help the drugs. And at that stage I wasn’t on the simvastatin but I did everything in my power to make myself more healthy.

Ros hasn't been called in for regular monitoring but goes to see the GP if she feels she needs to.

 

I’ve had a blood test and it’s all right. My cholesterol is low. I had to phone up for the details and that’s it, they’ve, you know, I don’t have to go to the doctor unless I need a doc, the doctor.

 

Ros feels upset that her GP hasn't encouraged her in her attempts to change her lifestyle

 

I changed my whole, whole life, I haven’t got a car any more. So I know if I haven’t got a car, then I have to walk. So, you know, I’ve, I’ve really tried to help myself.

 

And do you, have you found that you’ve got the impression that they haven’t kind of bought into that so much, or …

 

I don’t know. I don’t know really. Maybe I needed a bit more praise and saying, “Well, you’ve done well, you’ve, you know, you’ve, you’ve really done well.”

 

Encouragement?

 

But no, nobody’s said that, they’ve just …

 

No.

 

...left me to get on with it. I, that’s how I feel.

 

Yeah. I can see. So, you’re feeling a bit like, what you said earlier, not listened to and I suppose in a lot, for a lot of people encouragement is one of those ways …

 

Yes.

 

...isn’t it, that we keep going, …

 

Yes.

 

...and move forward.

 

It seems all negative, you know. I’ve, I feel that I’ve done well but nobody said, “Oh well done” you know, “You’ve really done well, you’ve lost four stone”.

 

You have.

 

“You’re walking where you never walked before”. I got rid of my car so that I, I make myself walk, I have to walk.

 

Ros felt she would like more encouragement from other people about how well she had done at losing weight and taking more exercise

I changed my whole, whole life, I haven’t got a car any more. So I know if I haven’t got a car, then I have to walk. So, you know, I’ve really tried to help myself.

 

And do you have you found that you’ve got the impression that they haven’t kind of bought into that so much, or …

 

I don’t know. I don’t know really. Maybe I needed a bit more praise and saying, “Well, you’ve done well, you’ve, you know, you’ve really done well.”

 

Encouragement?

 

 But no, nobody’s said that, they’ve just …

 

No.

 

.. left me to get on with it. I, that’s how I feel.

 

Yeah. I can see. So, you’re feeling a bit like, what you said earlier, not listened to and I suppose in a lot, for a lot of people encouragement is one of those ways …

 

Yes.

 

.. isn’t it, that we keep going, …

 

Yes.

 

..and move forward.

 

It seems all negative, you know. I’ve, I feel that I’ve done well but nobody said, “Oh well done” you know, “You’ve really done well, you’ve lost four stone”.

 

You have.

 

“You’re walking where you never walked before”. I got rid of my car so that I, I make myself walk, I have to walk.

Ros says make sure you don't bottle things up, talk to someone about how you're feeling

 

I would say talk about it if you’ve got a neighbour or a friend or somebody that, you know, is quite happy to come and sit with you.

 

Try and talk, talk about how you’re feeling, you know. Maybe they won’t understand it but try and talk about it because if you hold it in I think it, it’s like a volcano, it will just erupt. If you’re on your own and you don’t talk about it, you go out on your own, you come back on your own, I think you need to talk to people and see people, which I, I don’t see enough people.

 

A neighbour knocked on Ros's door to see if she could help when she was brought home in an ambulance, and since then has become a good friend

I would say talk about it if you’ve got a neighbour or a friend or somebody that, you know, is quite happy to come and sit with you.

 

Try and talk, talk about how you’re feeling, you know. Maybe they won’t understand it but try and talk about it because if you hold it in I think it, it’s like a volcano, it will just erupt. If you’re on your own and you don’t talk about it, you go out on your own, you come back on your own, I think you need to talk to people and see people, which I, I don’t see enough people. Hm.

 

I will say there has been one positive thing that happened to me after the mini-stroke, when I came back in the ambulance a lady knocked on my door and she said, “Ros, what’s happened?” And since that day, she’s been a friendly neighbour to me. So, yes.

 

So that could open up ..

 

It was …

 

… new avenues …

 

.. a blessing in disguise.

 

Yeah.

 

And, yes, and she took me to the doctor and, and if I need anything big that I can’t have it, carry, she’ll take me in her little car and, yeah, yes. So out of that, out of my stroke…

 

Some friendship?

 

.. I’ve made a friend. Yes, so that’s a good, that’s a good thing [laughs].

Ros found it difficult to control her anxiety and was referred to see a counsellor

 

You have to, you know, you have to make yourself strong and did make myself go out even though I was terrified of having another stroke. I made myself go out.

 

So did you feel that going out was kind of the, the way to dissipate those feelings a bit?

 

I don’t know because I was so scared but I did go and, I, all the time I was saying, “Please God, don’t let me have another stroke, don’t.” And I used to get there and come back as quickly as possible and then I was all right when I was at home.

 

But very fearful.

 

So when you said that you were seeing somebody for breathing techniques …

 

Yes I …

 

… how did you access that help?

 

That was from the doctor because I went to see the doctor, well she had to see me to do with the stroke, to see how I was getting on with the tablets, and I obviously got upset, and I knew I wasn’t suffering from depression because it, it’s a, anxiety and depression are entirely different. So she said, “I'm going to refer someone to see you from the medical team.” And she’s coming again next week, so..

 

OK. So you …

 

So I …

 

… have one session …

 

Yes, I’ve had one session for three hours…

 

Right.

 

.. I was very impressed with that.

 

And did you find it helpful, or did it seem like it might be going to be helpful?

 

Yes, I think it will be helpful. Yes, because I felt as if somebody was actually listening to me about my anxiety because it’s not really, it’s not something you can control.

 

Ros's advice to people who have had a TIA is to talk to people about it rather than bottle up your feelings, although sometimes it can be difficult because people don't always understand enough about strokes

I would say talk about it if you’ve got a neighbour or a friend or somebody that, you know, is quite happy to come and sit with you.

 

Try and talk, talk about how you’re feeling, you know. Maybe they won’t understand it but try and talk about it because if you hold it in I think it, it’s like a volcano, it will just erupt. If you’re on your own and you don’t talk about it, you go out on your own, you come back on your own, I think you need to talk to people and see people, which I, I don’t see enough people. Hm.

 

I think people need to be a bit more sympathetic with all stroke victims, not just mini-stroke, all stroke victims because we, we don’t know what’s happened to us.

 

And it’s just easy to say, “I’ve had a stroke” and, you know, “Oh yeah.” Nobody says, “Well, what, what is that? What happened to you?” Nobody says that. They just, “Oh yeah, hope you feel better.”

 

So does it feel like at that point there’s a bit missing, that the conversation just can’t go any further because …

 

Yes.

 

… people don’t really want to know?

 

I think so, yes. I, probably, and possibly they, they don’t understand what a stroke is anyway, so if you’ve had a stroke that’s it, oh your arm’s gone, or your leg’s gone and you lost sensation down one side. But it’s more complicated than that.

After her major stroke Ros found it difficult to tolerate the medication she was prescribed so stopped taking it and now she wonders whether carrying on with the medication might have prevented her from having the TIA

Strangely enough after that major stroke I was in hospital five days and I got over it quickly. But with the mini stroke mentally I didn’t get over it.

 

When you said that you got over it quite quickly on the major, the major stroke what, what were the symptoms that you had for that one?

 

My speech was my hand and my arm but wasn’t … I couldn’t control it. But the right part of my brain affected the left side. But I could walk and I could do everything except speak properly.

 

Right.

 

Yes.

 

OK.

 

And that …

 

So did you feel did you feel that that, I mean I know that was labelled as a major stroke…

 

Yes.

 

… but, but they weren’t, you, you didn’t have any lasting symptoms from that afterwards, that stayed?

 

No. No.

 

So you fully recovered?

 

Yes.

 

Right. And did you, were you put on medication for that, after that stroke?

 

I was advised to take simvastatin by the consultant and because I’d had a very, a lot of side effects I didn’t take the simstatin. So maybe …

 

No.

 

.. that was the cause of my mini-stroke.

 

Were you ever given aspirin? Or told to take aspirin?

 

I can’t take aspirin.

 

OK.

 

Yes, they did mention that and they gave it to me in the hospital and I was vomiting so they took it off me.

 

And, so then there wasn’t an alternative that they could give instead?

 

No. No.

 

Right.

 

I was on medication, I was on blood pressure tablets, a stomach tablet and something to help me with the, the stroke but they, the one that they wanted me to take I didn’t take.

 

Right.

 

So now of course [laughs]...

 

What do you feel about that now then?

 

Well, maybe if I’d have taken the simvastatin, maybe it wouldn’t have happened.