I lost the use of my right, my right leg. My right leg is completely gone. I can’t feel it. I can’t move it. I can’t, I can’t do nothing with it. My right arm, I can move just a little bit not too much but just a little bit. And through the stroke itself I’ve developed diabetes. I’m now a diabetic which I wasn’t before. I also suffer with epileptic seizures as well, which can just come on at anytime. I don’t know when they’re’ coming on. Afterwards I can’t remember anything. I’m very tired. I’m very tired when I’ve had my, had a seizure. I’ve got to go to bed. The other thing is that I have as well what you call sleep apnoea, which is an illness where periodically while you’re sleeping you stop breathing. And it can be fatal, if not treated you can die from it. And I wear, for this I wear a face mask, a full face mask, when I’m, when I’m sleeping at night and I have done for the last nine years. So I’ve got that to contend with as well.

Yeah the, the other thing I forgot to mention Kerry was that since I’ve had my stroke, my eyesight has deteriorated to the point, where our local eye hospital has registered me blind now. So I am registered blind. I carry a card to that effect. So all and all the stroke has up, well upset our lives a little bit. But what we tend to do is we don’t, well we try not to let it get on top of us.

And presumably losing the leg in the first place was diabetes-related?

No it wasn’t.

Oh, it wasn’t?

No it was MRSA.

Oh no.

Yes, so, but I did have problems with that leg, because I’ve broken it twice, and basically it was in a walker boot, but, and I was getting treated – we lived in [name of city] then – and I was getting treated at the local hospital, but they eventually said well, they didn’t actually say anything. I think they would carry on treating things, because I was getting sores and things in the boot, and they were sort of diabetic-related in that respect. And then I got a huge big lump and they thought it was – oh what’s it called? When your circulation and your blood and everything sort of, you have a clot. But actually I went into hospital and they said to me, because I’d had problems with that leg for about 18 years, and they said they actually well, obviously they took the swabs – and they eventually came and told me it was MRSA. And then a man at 11 o’clock at night said, Well, I think we’re going to have to amputate your leg tomorrow’ and tomorrow morning’ – so I didn’t have much time [laughs]. It was 11 o’clock at night, and so I rang [name of husband] and said, I’m having my leg amputated’ and he couldn’t believe it.

In 1997 I’d had a kidney transplant. And they said, It’s either going to be your kidney or a leg – which do you want to lose?’ And at the time my kidney was really important to me, and it just thought it gave me a different kind of life, and my leg has been bad for 18 years, so I said, My leg. So – and they also told me with an artificial leg you’d be able to go skiing and do whatever you like, but actually I haven’t. But I mean, you know, in fact before my stroke I could walk and do anything quite normally. I didn’t even have a limp with the artificial leg, it was absolutely fine.

And that choice between leg or kidney?

Yes.

Was that because they thought there was a risk the

Well they said the MRSA would go into my body and just work its way up and, you know, it would probably take anything that was susceptible to going, so my kidney would probably go. And I just felt, I mean I’d had it well, I’d had it five years and I just felt, No, I’ve only had it five years’, so I just wanted it to go on forever, sort of thing.

And the kidney transplant did come from the diabetes, presumably?

No it didn’t.

How many bad luck stories can there be?

No, it came from the fact that when I was a baby I lived in Africa, and my mother apparently said I did have a fever and it turned out that I’d actually had a kidney infection and it had left scaring on my kidney, on my kidneys. And suddenly in my twenties I got another kidney infection and I started being treated at the hospital for this new infection and everything, and then they decided that I had kidney disease, but they actually said that the diabetes would aggravate it and probably – I mean that was when I was about 25 or 24 or something like that – and they actually said to me, You’ll be on dialysis, you know, within a couple of years. But actually I didn’t go on dialysis until about 1993, when my daughter was about two, two and a half, so it was actually probably the pregnancy which had aggravated the kidney, but you know, I didn’t go on dialysis. They actually said I’d be on dialysis by the time I was 26 and I wasn’t, so I kept going until I was 32.

And of course you’d had a kidney transplant as well back in the days…

Well yes I had, that’s true, but also when, after I had [name of daughter] I think it was before I went on dialysis yes, it was before I was on dialysis, I had to have a hysterectomy when she was just two and, because after I had her I carried on being sick and they couldn’t understand why. I’d had morning sickness throughout the pregnancy anyway, but I carried on being sick so, I mean, you know, it couldn’t have been – but of course the kidney people said no, it wasn’t the kidneys. It was my hormones. And also I was getting very heavy bleeding, so basically they gave me a hysterectomy. But the hysterectomy went slightly wrong and – oh I don’t know, I had one thing after another – and then when I was in intensive care after the hysterectomy they had to put me onto dialysis for two weeks. And then suddenly my kidney went into overdrive, like it was on a honeymoon period or something, and worked for six months, and then suddenly it went downhill and I had to go on dialysis at my daughter’s third birthday. So in fact I went into hospital, you know, over her third birthday I was actually in hospital having the tubes fitted really because I was going to go on CAPD [continuous ambulatory peritoneal dialysis] which is a system you can have at home.

I don’t really think about my conditions. Apart from the walking, not being able to walk. I think that’s the only thing that annoys me at the moment, because that does actually annoy me that I can’t walk and I have to rely on others to do things for me and I mean [name of husband], because we’ve got a step between our sitting room and kitchen, I’m usually in the sitting room, he has to do all the cooking. I mean he used to be a chef, but even so he still has to do the nightly cooking and everything so.

Were you given any indication as to what caused you to have the stroke?

I have, well I did, I have a blood condition which makes my blood clot a lot faster. And I was on the pill. And I was on a drug for my rheumatoid arthritis and they say that rheumatoid arthritis can cause strokes anyway. So it was a combination of like a few things.

Oh right. Yeah. Were you aware of those risks before?

No.

OK. Did you look, I don’t know did you look back at the medication you were on to see what was said?

Yeah.

And did it say something about that like

Yeah.

..it’s a rare occasion or something was it?

Yeah like, like 2% of people
Yeah.

..you can have.

You must be gutted?

Yeah but we didn’t find out I had a blood condition until after I had my stroke.

it’s quite tough sometimes. I get quite frustrated that it’s sort of all happened to me like in few, in like about two years, like I had, I was diagnosed with rheumatoid arthritis. Then I had my stroke. And then I’ve just been sort of diagnosed with lupus and things like that and it’s just.

Oh really.

it’s sort of all come together in like the two years and I’m like, I used to be so well [laughs]. Type thing. Like when I was younger. But, I still am but it’s just quite frustrating.

Is lupus something that you would have had for a long time that they’ve only just discovered or
Yeah. I think
..it’s a hereditary, is it a genetic
I think so
ondition or
…so, yeahThey say that I could have had it since I was wee because I used to have quite, I used to get quite sensitive skin, when I was out in the sunshine and then I used to get I used to get like chest pains when I was a bit older and then it sort of came to a head last year.

And the ambulance couldn’t find us which was quite distressing. Although my husband was on the phone to the 999 person trying to direct them. And then because we’re only half a mile from the doctor’s surgery I thought perhaps I better get him to take me there in the hope that somebody was at the doctor’s surgery. So, I had a little bit of strength left. I had enough strength to either go to the bathroom, which I wanted to do, or get to the front door. And I propped myself up on the wall in the hall and made my way to the front door and called [husband’s name] to take me to the doctor’s. And the ambulance and the doctor turned up at the same time just as I got to the front door. And I thought, Oh I can’t stand up anymore I’d better sit on a step. But because I’ve got arthritic knees I couldn’t sit on the step, my knees wouldn’t bend and I started falling backwards. And I realised I was going to go through my plate glass door so I put my left arm down to deflect myself away from the glass. And I was going quite numb by then, so I didn’t really know I’d hurt it at that stage. I landed on it, it was tucked under me. I landed on it.

When I fell I wasn’t aware that I’d hurt myself. I remember that, I’d landed on my arm. My left arm was under me when the ambulance people got there. But it didn’t hurt at that stage because my left side was quite numb. The nurses couldn’t understand why I kept saying, It hurts, why does it hurt? I’ve only had a stroke I haven’t had a car accident. It ought to be numb why does it hurt so much And they kept saying, You’ve had a stroke what do you expect So I said, Well that’s just it, I haven’t been in an accident, why does it hurt so much? My leg doesn’t hurt. Why does it, you know, why does it hurt And all I ever got was you’ve been, you’ve had a stroke what do you expect I, in the end, by the time I got home, I’d told (some) doctors, all the nurses and nobody looked into it. I ended up, I found out later after I got home and went for an x-ray that I’d had a fractured wrist and that it’d healed itself.

When I was in the hospital the only thing I could feel, and obviously I couldn’t feel anything, was them tugging at my leg because they obviously knew it was artificial but they didn’t know how to get it off, and they tugged and tugged, and then I must have gone out completely, because the following day when I came, when I eventually came to, my leg was sitting on the side. And I’ve got a rubber thing which keeps it on, which goes right up to here and you have to, when you’re taking the leg off, by pushing a button, you have to pull the rubber thing down, but apparently they just pulled it off me somehow – they managed to, but it stays on by suction, I mean it must have been really difficult. So, but I thought afterwards they really ought to be taught. I mean, I can’t be the only person with an artificial leg who’s had a stroke, but they really ought to be taught how to take an artificial leg off.

And the walking, I mean, given that you had an artificial leg anyway, it must have been quite difficult to get that going again, wasn’t it?

Yes, well, it was and it wasn’t. I think the artificial leg in a way helped me because you know, I could see a lot of people who’d had strokes that their right leg is completely gone, but of course with an artificial leg from the knee downwards it’s solid, and your ankle’s solid, so actually it’s easier than not. But they did try to help me to learn to walk at the County Hospital, and they got me out of bed with hoists and everything, and I had to stand up and whatever, but the first time they put on my artificial leg, the rubber thing has to go on absolutely straight, and be clean to the skin, otherwise if you have any air pockets it can cause blisters. And because I hadn’t got any feeling in that side I didn’t realise that this thing wasn’t put on properly, because I couldn’t put it on because my right arm was so bad, and they put it on, and when they took it off my leg was covered in blisters, so I couldn’t wear it, actually, all the time I was in hospital so they had to give up on that side of things.

I was virtually unaware of what happened the first time, was almost like going to sleep in the middle of, almost in the middle of a conversation really, and I must have sort of passed clean out really. But presumable shook the while, I mean the first time I did have a seizure was admittedly a [my previous work’s] party, an anniversary party, tenth anniversary. When I was as yet, well all I was doing was, I had a glass of champagne which didn’t see eye to eye with the, the pills which are there to bring down my blood pressure. So I had a bit of a seizure then but that was a very different matter. The time I had the seizure in the last hospital I was in, was without any, any role played by alcohol at all. It just happened out of absolutely nowhere, I, suddenly became, well I didn’t become aware actually that I was shaking, I now realise that must have been what happened, but I was in the middle of a conversation with a researcher in fact at the time. And, then everything is erased after that, I don’t, don’t have any memory of what happened after that. When I got home I was still, still having these seizures and, found that if I got at all fatigued particularly by talking at any length, I might have a seizure like this. I was later told that it could have been as a result of some new pathways being built in my, in my neurological system and that might have been what activated these seizures so long, long after I was ill, might have been. Anyway I’m now under medication which is specifically designed to arrest the seizures and as I say, it is now, it’s pretty much a year, and I think more actually since, since I had them.

One thing I wish I’d known but I think I mentioned this earlier. I wish I’d known I was prone to these seizures having had a stroke. As I say, my consultant said it is about 10-12% of the population have these, so, after a stroke, so it sounds as though it’s uncommon. Had I been forewarned I don’t know what I would done well, there is some danger there because when you have one, at the end of it, you can fall unconscious. So now when I have one, I make sure I’m sitting somewhere comfortably and safe. Only once did it happen to me and I did fall over. I didn’t hurt myself badly but I suppose it could have been bad.

Yet again, I always do it in my house, [aeroplane over head] here with a friend, who called an ambulance and I was taken to the local hospital around the corner here, and it was there that I met, the neurologist who remains my neurologist to this day and who is, a very intelligent and very, [takes deep breath], good man, having said which, hes made one or two errors, I think, as far as prescription drugs are concerned with me. But he, the first thing he said to me when he met me was, ‘You’ve been having a very hard time, haven’t you?’ And he diagnosed that I was suffering from migraine as well as epilepsy.

So theres a whole other side to my stroke that needs to be managed apart from my physical disability, which is, the residual, damage that’s been caused to my brain which has, you know, caused it to misbehave, which can also interfere with my life quite considerably and effectively disable me in quite a different way from being physically disabled [aeroplane flying overhead]. So that was a very useful meeting, to meet him in there. And I became his patient, and a bit later that year, I went for my first appointment to see him and he said to me, ‘I really do believe you’re suffering from depression,’ and I had no idea what depression was. And he explained to me that when somebody is put through constant medical, from my situation, constant medical trauma not just with the strokes but with trying to deal with epilepsy and going back into hospital again you’re using up the serotonin in the brain and your brain can’t make up, make enough serotonin to keep up with the demand and so you’re basically running on empty. And so he put me on some anti-depressants for the first time in my life, which did work.

And then about 10 months ago now, one morning, lying in bed, I suddenly suffered from a seizure of like an epileptic fit. I spoke to my consultant later about that and he said, ‘Well’, he said he didn’t think it was epileptic. These seizures are quite common amongst people who have had strokes. He said between 8 and 14% of people who have strokes suffer from them and I had this thing and it was very, very frightening and really, you just lose control of your body. It goes into this terrible jerking motion. Anyway I’ve had several minor recurrences of that even though I’m on some medication to deal with it.

Do you know what medication you’re on?

It’s Epilim and I’ve had a couple of small instances since my doctor put me on and he keeps upping the dose each time so I’m on quite a big dose now. About 900 mg. And of course unfortunately, having had that epileptic type seizure, the DVLA, I was very anxious to get back on the road driving properly, so I had quite a lot of driving lessons. I went on to the driving assessment centre in [the local city] to let them have a look at me to see if I was safe to go out on the road. They did have some concerns about the way I was driving and then when’ when the DVLA learnt I’d had this fit, they said, ‘You’re not to drive for 12 months’ and every time I have another one of those fits, it gets extended. So I’m not driving in this remote place, that’s a real handicap.