Interview 10

Age at interview: 44

Brief Outline: She had a stroke (aged 41) due to a clot from a hole in her heart which caused left-sided paralysis, numbness and central post stroke pain (CPSP). Medication' simvastatin (cholesterol), aspirin (antiplatelet), gabapentin, amitriptyline (CPSP).

Background: Is a divorced mother of 2. Was part qualified accounts person and a fitness instructor but is not working because of stroke. Ethnic background/nationality' White/English.

More about me...

This woman had her stroke at the age of 41. Her stroke was due to a clot from a hole in her heart which she had two operations to repair while she was in hospital. After she was diagnosed with the stroke she realised that two previous periods of illness, where she felt dizzy and had some visual symptoms and slurred speech, were probably mini strokes. 

Her stroke caused initial paralysis and numbness in her left arm and leg. Rehabilitation in hospital helped her recover the use of her arm and leg and she is now able to walk normally. However, she still has numbness in both her leg and arm. Her major problem now is severe central post stroke which is due to damage in part of her brain. She mainly feels the pain in her shoulder. 

She has been given medication to help combat the pain but find that she gets most help from having hot baths, doing regular physiotherapy and using relaxation techniques. She would like to go on a course to help her learn techniques to manage her pain and is always looking for new pain relieving treatments. She regularly receives newsletters from a couple of support groups to keep in touch with new developments.

One of her major concerns is to keep life as normal as possible for her two daughters but sometimes finds this difficult because the pain can take over. Her daughters are very supportive and helpful.

Realises that two events before her major stroke were probably transient ischaemic attacks and...

You mentioned you think or they said that you'd maybe had 2 mini strokes before?

Yes.

Can you remember those two times?

Yes. Yes. I can remember exactly when they happened. One was about a fortnight before the main stroke and the other was about a month prior to that.

And what did they feel like?

Well, the first one was what I thought was a very bad migraine and again it was distorted vision, stars and flashing lights and jagged edges and very small field of vision and I put it down to a bad migraine and I'd been very, very achy, very exhausted for about 4 days and I thought I'd just had a viral infection and I went to bed for a couple of days and took paracetamol and slept and then within about 4 days I was absolutely fine. I felt very weak for a couple of weeks after that because I can remember I was teaching class and I hadn't got the energy that I'd had before. And then the second one, again, it started with what I thought was a migraine and, but no pain as such in my head, just all the distorted vision but no headache, just, just the distorted fields and I felt like I'd had about 3 bottles of gin. I can remember I was slurring my words and I remember my daughter saying, 'You, are you really tired?', we were sat watching a film and I just didn't feel well, feel well at all and I said, 'No, I don't feel too good, I'm going to go to bed' and she said, 'You were, you were slurring your words and you were dragging as you were going up the stairs' and again, I thought, 'Oh, I'm ill, I've come down with something'. And I, my shoulder, I woke and thought, ironically the same shoulder that, that's now affected from the stroke, I thought I'd done some damage to it during an exercise class and I'd pulled some muscles or ligaments and strained it because the next morning, it wouldn't move the same and it was, it felt very, very odd. No pain but very uncoordinated and I just took it very easy for a few weeks and then this main one came but obviously I had no idea about what the word stroke meant or even the fact that you could have mini strokes that were like little warning signs prior to it. I didn't listen to them. I wasn't aware of them because I knew nothing about stroke but had I gone to the doctor with those, then maybe the main, the major stroke wouldn't have happened, who knows? I wish I had gone now.

Found it difficult to be helped with washing and said it was a turning point when the nurses...

Tell me about your experience of, you know, having to have somebody help you with washing?

It was horrible because the particular nurse, say, the particular nurse that did it wasn't a very friendly nurse. She was very young and she didn't chat. Some of the older ladies, as they're washing you, they'll chat and have a joke and a laugh and that's great and, and make comments and, but this particular, the very first time, I was mortified and I just couldn't do it and she said, 'Well, I'll come and bath you' and she made an odd comment and she went away and I just cried. I just laid there and cried and I thought, 'Nothing can be any worse than that', to have somebody, because I'm aware of what's happening obviously and then from then on, as I say, it, the next few times were easier and then gradually, they brought a thing of water to the bed and a flannel and some soap and the first day I washed myself in bed and I cleaned my teeth after about 4 days. 

It was absolutely wonderful and that was a turning point and then the next goal was I get into that bathroom and I have a bath, well, I had a shower actually. It was much easier to sit in the shower at first but I managed it that way and there were grab rails at the side that you can hold on to and the nurses will stand by. There's no chance of you having a fall. They were great. They give you the respect. They'll stand outside the room while you get your underwear on or off or whatever. That, to me, was just the first stage in a long recovery but it was such an important stage being able to keep myself clean on my own. That sounds silly saying that. It's something you take for granted every day. You get up and have a wash but you haven't got the ability to clean your own teeth and illness is something that had never registered with me in my life before and I think this is probably why it came as such a shock because I was a fitness instructor and very, very healthy. Had I not had that as, as my lifestyle up to that point in time, I perhaps would have found it a lot easier to adapt. 

Has severe pain which she has been told is central post stroke pain due to a clot which damaged...

My disability isn't one of, of non movement. It's of chronic pain in, in my left shoulder and down my left arm. It started ironically probably about 10 or 11 days after the stroke. There was no pain at all initially, lots and lots of confusion and, and lots of flashing lights and whatever but no pain at all in my body. Just a sense of weakness, not being able to use my left leg and arm. That co-ordination came back very gradually. Physio improved my leg enormously. When I got back home, I was very, very rigorous with my exercises and really, really pushed it and my leg now is much better but the pain in my arm is something that hasn't changed really since about 10 days after my stroke and I can remember waking in the hospital and thinking I'd dislocated my shoulder because it was in, I was in so much pain and the consultant who came to see me had, well, he'd actually sat down with me and explained that he didn't think it was a shoulder dislocation. There was nothing wrong with the limb itself but because the clot within my brain had hit the thalamus, which is a little bit deep inside the brain which I believe controls pain receptors, sends pain messages and receives pain messages and part of it had been very badly damaged. They do not know where the damaged nerves actually are so they cannot repair them but they seem to think that the pain senders are sending my body constant messages telling me that I've got pain in my left shoulder, although I haven't. The shoulder is perfectly good, it's a good working arm but for some reason obviously my body thinks it's in chronic pain all the time.

Manages her severe central post stroke pain with relaxation, hot baths and distraction Medication...

I'm on medication for the condition which is known as central post stroke pain but it hasn't been effective in my particular case, it hasn't made any difference at all to the pain levels. It's something that it's, it's a pain that's very, very hard to describe. Having had pain before, childbirth and so forth, it's something that is over and done with and it's a mean, you know there's a finite end, you've got it for a period of a block of time and then hopefully it will go. This pain has been here for a very long time and it's something that has been, now become part of my life in the way that I have to lead my life and I have to adapt to the way I live around it. It causes me a huge amount of wasted energy fighting the pain because I want to do things and I'm physically exhausted and can't do what I want to do with my children. I haven't slept a full night through since the pain started, which was 2 years ago, because I'll find I'll get to bed and it'll wake me and it feels at its worst as if somebody's trying to pull my arm, twist it and pull it away from my body. I've no perception of where my arm is at this point. It's as if somebody's put a spear and turning it deep inside my shoulder, all down my arm into my lower arm and into my hand and I have to, I'll get up and I'll do my physio or I'll have a hot bath. 

Sometimes I won't stay upstairs because I'll wake my daughters. I'll come down here and I'll, I'll even wash the kitchen floor or, my right hand, fortunately I'm right handed, I, I'll do ironing. It's mind over matter. You have to not let it beat you. It's something that you just have to get through in a way. There are certain things that make it an awful lot worse and I avoid them cold. I can walk past a freezer in a supermarket and it's as if somebody's put a knife through my shoulder. It's there all the time at different levels. At its worst, it's like your worst nightmare, it's something that I couldn't begin to describe because I've never had pain that bad before. It's as if, it's frozen. I've never been skiing and I've never had frostbite but it's so icy cold all the time deep in my shoulder, it's as if it's on fire and that's, that's a really ridiculous way to describe it but it feels like frostbite constantly in my shoulder and down my arm so it has completely, completely changed my life, the pain that the stroke itself means to pain to me because it's the only deficit I've unfortunately been left with. At the moment, there isn't really any other treatment for it. I've tried reflexology, I've tried acupuncture, I've tried hypnosis. To be honest, I'd jump off a cliff naked if somebody said it would work and I'd even got to the stage where I'd been to see my family doctor and wasn't coping with the pain and was under stress, also, in different areas of my life and that impacted greatly on the extent of the pain and the depth of it, the intensity is far, far worse if I get very upset. I've known, I've no idea why that should interact but I know from my experience that if I get worried, stressed, very upset, my pain is a thousand times worse or maybe my ability to deal with isn't as good. So I try and avoid the things that I know will make it worse.

It's not an easy pain to live with because it's not constant, it's here all the time but then it can come in a quick sudden surge for no apparent reason and literally wake me from a deep sleep and, and I'll wake and I'll just, I'll just be rocking, as you do with cramp when you have to wait for it to subside and then when it gets past that intensity I go and I do my physio or I'll have a bath. I feel, I found that relaxation tapes help enormously that I, I'll do a set of physio and then I'll put a tape on and I do find that very, very positive and very therapeutic.

When she first came out of hospital she was always tired and she incorporated sleep into her plan...

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. 

Feels that not being able to drive has affected her life enormously because she lives in an area...

The DVA haven't given me my license back. I'm still waiting for a consultant's report so, to actually go and look for a house is very difficult and we're off a bus route here because it's quite a rural village. It's, the buses are every couple of hours, to actually get into [local city] means a, an hour journey almost right through a lot of villages further down the road or a taxi which is more money, so I, I'm looking to move nearer to shops, nearer to the girls' school and hopefully in time then find some form of work that I can walk to, that I can do on a, a part-time basis, even if it's just a couple of hours each morning and then go home and do my physio and have my day sleep and, and built it up like that.  

She tried to keep things as normal as possible for her daughters but worries that they have been...

I'm very, I'm still very bitter that it's happened and I'm so young. If it had happened and I'm 60 or 70 or 80 and I hadn't got the responsibilities of the children, I could have accepted it a lot more. It's the fact that they've, my children have had to learn to live with my deficits as well as myself and they've had to learn to adapt their lives and I didn't want that. I wanted a normal childhood for my children. I don't want them worrying about me, 'Oh how's mum today? Has she had a good day?' I want them to have a really happy childhood and I feel in a way, it's a big lot and it has marred what should be a very, very happy time in their life and it has affected the relationship that I've had with them. Obviously I had a period of time a 4 month stint in effect continually in hospital having first been diagnosed with the stroke and then having 2 successive heart operations. They had to live with my parents over that 4 month period, which was very, very difficult both for them and for my parents and then re-adapting back to life at home was very, very hard because I hadn't got the same energy that I had before. I couldn't do things as quickly. We couldn't just go off on a bike ride or go for a swim or drive out and have a picnic because, first and foremost, I couldn't drive, we're in a remote village and I couldn't, I just found I couldn't do it and it's the effect on the children that I find very, very hard to come to terms with and people have said to me in due course, 'It may make them stronger individuals' I don't know.

She had several disagreements with her mother because she was helpful after the stroke but was...

How was it that time when, you know, perhaps you started doing more for yourself and your parents were doing less for you?

Awful because my mum had been very supportive when I first came home from hospital and she'd very much really taken over where the nurses had left off, so she would be cooking meals for me and a tray would arrive. At breakfast, she'd bring it up to bed. I mean, she's in her 70s and before I woke, she would bring it and I'd say, 'Mum, I want to come down and get my breakfast'. Really the first few weeks were hard because the first few days I wasn't well enough to do it and then gradually, as the stitches and such like from the operation improved, my health improved and I got the strength and I wanted to do more for myself and I wanted to prepare meals because I knew that in a finite number of days or weeks I was going to be back at home with my 2 daughters, not only did I have to look after me, I have to look after them. 

So the sooner I started, the better and it was a constant battle towards the end with my mum and I had to upset her a few times because she would, she wouldn't let me do things and it was holding my recovery back, it wasn't helping me because I wasn't using my arm because she was doing all the preparation work, even things like washing up, drying pots, you are using it to some degree, every simple task you can think of and she, she was jumping in there and doing it for me and we, we had a few, a few weeks where the relationship hit rock bottom because, obviously, mum was very unhappy and I tried to say, 'I'm so grateful for what you have done, I couldn't have managed, I couldn't have got where I am without you but I need now to start doing things for myself and learning how to do them for myself and the longer you're doing them, the harder it's going to be for me to do them' and she didn't like that at all because she got into the little role of being sort of the carer and she didn't like it when I came back into my girls' lives after 4 months because they'd lived with her and I took back over but the mum role, so for probably about 6 to 12 months after that, we had a couple of little clashes which I feel very bad about but they happened because I needed to be independent again and I couldn't make my mum understand as much as I tried gently by dropping hints or by even saying outright, 'Mum, please let me do it, you know, this is how we did it before and we're going to get back to that' and mum said, 'Well, I'll do it for you, I'll get it, I'll pick it up, I'll do this' and I said, 'Mum, you, you really don't understand. Please I need to do it' and she would, would push and then in the end I'd have to say, 'No mum, please, leave it'. That was very hard because I know I was hurting my mum because in the goodness of her heart, she was helping and she was doing it for all the right reasons but it wasn't helping my recovery. 

Have you been able to talk about it now?

Yes. Oh yes, I have now. She's, she's fine about it and she does understand that now and I think if it were one of my daughters I would probably have the same issues because you obviously want to look after your child and even though I was 42, I was still her child and I was still her daughter and that, that instinct to nurture and care for is very strong but I was very angry and very bitter and resentful that I should be doing it for them and I felt, they didn't make me feel it at all. Nobody, in a thousand worlds would ever have said anything. I felt such a burden. I hated, everybody must who is ill. It's not nice having to rely on other people to do things for you. It's very, very hard when you've always been the sort of person whose led your life independently and done things for yourself and run your own affairs, then to literally have to be, you know, spoon-fed, it is very, very difficult, as you can imagine. It’s not something that’s easy to accept.

Felt judged and blamed and that she wasn't treated as a person because she was young to have had...

I think first and foremost probably one of the worst experiences of the stroke was when the consultant had come along, I think I've mentioned before, and asked me had I taken drugs on 4 or 5 occasions, which obviously the question had to be asked but the way it was asked and what was inferred, it was, it was how it was inferred and I'd answered him twice no categorically and he said, 'You can tell me off the record, have you?' and I said and he, it upset me very, very much because I felt like a piece of dirt. I really felt like scum because really the consultants and the staff don't know you from Adam. I suppose you go into a hospital with an illness and they've no idea about your lifestyle or you know, your integrity, how you live your life and I didn't feel as if there was very much respect there on several occasions. It could have been done a lot, some of the questions could have been asked differently or worded differently whereby I didn't take offence and I was very emotional when all's said and done. That was part of having the stroke. It made me tearful and cry and I wasn't intelligent or articulate and questions were asked and I was just a bubbling wreck because I was in total shock and sometimes I felt that the consultants didn't treat me as a person enough. It was more as if I were just another case or another piece of paper or another case study really, rather than me and I think people, a lot of people had said to me, 'Well, you'll have to give up smoking now' or one lady in hospital had said to me, she'd been visiting her mum who'd had a stroke and she came over and she said, 'We knew somebody who had a stroke and they were she was only 40 but she was an alcoholic' and looked at me and I thought, 'Well, perhaps a glass of wine, you know, now and then on a Saturday night' [laughter] and I think it was just people's perceptions that if you were younger, it was because you had a problem with alcoholic or because you smoked an awful lot or you were very unfit or you sat eating fish and chips every night or whatever and I think they classified me in, she must have done something to herself to have had a stroke, and that's how it felt. 

I don't know whether it was deliberate I probably was very sensitive but it felt like that and I felt like saying, 'This isn't fair, you know, I shouldn't, I shouldn't be here' and I'm sure everybody in that stroke ward felt exactly the same, you know, we shouldn't be here but you go to bed one night in your nice little house with your lovely life and your little family and there's a future and then, you know, you go to bed the next night in a hospital bed in a, you know, a paper nighty and you've got to wee into a kidney dish laid on your back and you think, 'Hey, what are you doing up there? Why, why are you punishing me?' sort of thing. But I'm sure it's something that everybody feels angry about. 

One particular nurse in a specialist neurology unit I was at had had, he was the first nurse that came to see me when I went into the unit and he was absolutely wonderful. He told me he'd had encephalitis which is it water or swelling of the brain and he'd been really poorly and he'd been very lucky to survive it and because of his particular obviously what he lived through his particular life, he'd gone into nursing and he'd obviously specialised in brain and neuro surgery and he knew what it felt like to be in there and he came over and he, on New Year's Eve, we were there and we all celebrated in our own way and, you know, he came over and gave me a cuddle and said, 'You know, next New Year, you won't be here' [laughter], you know, and it was just a really bonding enriching experience because there are so many wonderful people who go into nursing and doc, and doctors and consultants who really genuinely do help and do make it easier and there are those who obvious

Developed a strong bond with the women she was in hospital with and feels the experience has made...

You get very, very close to the ladies either side of you because they tell you about their lives and about their past and about their children and it's very, very hard because you get quite attached to them and a couple of them passed away whilst I was in there and I found that very hard to deal with because it's something, I had lost members of my family but not spoken to them at 10 o'clock at night and had a conversation and then lost them during the night and then going and saying 'Come on [name of another patient] eat your Weetabix' and [name of another patient] not there any more so the whole process of being in hospital was completely life-changing for me.

It's made me a much more humane person. It's made me much more aware of other people, especially older people and people who have pain, which is something before I'd never had to deal with. I now understand a lot of the issues if you see an old lady and she's finding it difficult getting on a bus, to help and to sit and to chat. I find it much easier now to talk to older people , I think it's actually, in a way, made me a far nicer person maybe because I've had to take the time out in my life and readjust totally my whole values to my life and it does bring it down to ground zero and you start from scratch.