Interview 11

Age at interview: 41

Brief Outline: She had a stroke caused by a clot at the age of 34. The stroke caused left-sided paralysis, left hemianopia (loss of vision in left field) and epilepsy. Medication' aspirin (antiplatelet), epilim, tegretol (epilepsy).

Background: Is a married mother of 1 who works as an admin assistant. Ethnic background' White/English.

More about me...

This woman had her stroke at the age of 34 whilst on holiday in Africa. Although it has not been confirmed she wonders if her stroke could have been due to dehydration.

Her stroke was due to a clot in the right hand side of her brain and caused initial paralysis and numbness in her left arm and leg and loss of vision in her left visual field (hemianopia). She had some rehabilitation in Africa but on her return to the UK she discharged herself from hospital because they wanted her to go onto a ward with only older people and she just wanted to be home. She arranged her own physiotherapy including hydrotherapy, through the local surgery where she was working at the time, and eventually got back to walking. She now walks every day because she can no longer drive because of the loss of vision. She has found not being able to drive quite difficult because she feels she has lost her independence.

She returned to work after the stroke but was made redundant and now works part time. She is pleased that she can still work but frustrated that she can no longer achieve her full potential.

Her friends and family have been very supportive. A few years after the stroke her son developed some emotional problems which they think were mainly caused by worry about her health. They managed to get help from a psychologist to resolve these problems.

She describes how heminopia (loss of visual field) was difficult for colleagues to understand but...

So you mentioned then that that people often don't understand that you're, that you can't, that your vision's not quite right?

I think, it's, it's hard for people to comprehend that, the way, I would never have known how we see, that you sort of see 360 degrees with each eye to, to see and this eye's only got half my sight in each eye and when you say, say to people you're partially sighted, they say, 'Your eyes look fine', you know, so my, my eyes are fine, it's my, it's my brain, it's sort of further back than that that's affected so it's really hard to describe to people how I can see. What, what actually one of the doctors did where I worked once was get an old pair of sunglasses and put some elastoplast on, taped up half of each lens to blank out what I can't see and let some of the girls that I worked with try it on to sort of show them what I'm missing, if you like, let them walk about and most of them said, 'Oh God,' you know, the no idea, that's what it's like.

Discharged herself from hospital because she was desperate to get home and didn't want to be on a...

When I was in Kenya in hospital, I wanted to discharge myself and the insurance company said, 'If you do, we won't fly you home, you've got to stay until the hospital says you're well enough to be discharged or we just won't pay for you to get home.' So as soon as I was sort of within 10 miles of home, I thought, 'I'm definitely going to discharge myself, even if I've got to crawl home, I was so close' [laughter]. I think I would, yeah, I would do it again because I don't like hospitals anyway and looking round what the hospital was like, the way I would have been with old people with overflowing urine bags on their legs and dribbling their food, it was just no way to be shown what a stroke was like and I'm sure I did myself, although it was so hard to get home and have to crawl about, it was so much better to be at home with my dog and my family and the familiar surroundings and at some point you have got to get home and start living in your own surroundings and getting used to it so I'm sure I was so much better from that point.  

How about, did you discuss this at all with your GP?

It's difficult because I suppose it, I felt a bit guilty because my GP I actually worked, worked for at the time and he had arranged for this, the admission and everything, so it looked a bit ungrateful to turn round and say, 'By the way, I'm at home now, I discharged myself' but, and when I told him about, you know, the geriatric ward he could quite plainly see why I did it [laughter] and I think he was, you know, as a GP, he was irritated to think that other people needed the bed far more than I did and they wouldn't let me go as an outpatient and have the treatment I needed.

A few years after her stroke her son needed some counselling because the experience had caused...

My son was quite badly affected quite a long time after it happened to me. Not probably, I think to start with, there was a lot going on, it was kind of busy and there was appointments and things going on and, and we sort of perhaps let it all wash over him a little bit but he probably about 3 or 4 years after the stroke, he started missing quite a lot of time off school because of illness, not illness per se but tummy ache, headache, various things and he ended up seeing a psychologist and he had got quite deep-seated worries about what, what was going to happen to me, what had happened to me and he was frightened of leaving me to go to school, frightened of what was going to happen and I think we misjudged how badly affected he was by it. 

Did he find it helpful seeing the psychologist?

Yeah. He was fine once he, it was, it was quite strange listening to him tell the psychologist about what had happened and how he felt about it because I think we were too close to what had happened to have noticed what was going on, not, just hadn't realised how deeply it had affected him. You tend to think, 'Oh, you know, he's very young, he's 8, he's fine, he'll get over it' and you just don't realise how much they've taken in I think. 

Felt that she had nothing in common with the people at the stroke group - who all seemed to be...

So can you tell me about your experiences of perhaps using a support group?

It was suggested to me that it might be helpful to visit a support group and there was one locally, well actually in Coventry, which is not too far away from here which was intended for young stroke survivors as they like to call us. So I thought, well, it might be helpful. And the only, well it only helped the other people I think it's been a disaster for me. I went one, the Saturday before Christmas and I remember I went and I got all nicely dressed up, my high heels, make up, the lot and it was full of people who absolutely, it was morning and it absolutely stank of drink most of, which I couldn't believe and they all smoked which also I couldn't believe. A lot of them were on their fifth or sixth unexplained stroke, which I really did not need to hear, that people were having over and over perhaps drinking and smoking perhaps they were and it was horrendous and I know my GP that I work for said to me afterwards, 'There is something weird about people getting together when the only thing they've got in common is an illness' and he was so right. Never ever would I do that again. Never. Because it was true. All that the people were interested in talking about was their illness. So it was nothing in the way of a support group at all and it just made me feel dreadful because I thought, 'These people have had 3, 4, 5, 6 strokes, when am I having my next one?' But it made them feel wonderful because I'd had one and looked great [laughter] so did them some good and not me.