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Dot’s Story – Dot’s life changed radically as a result of a major, life threatening event. After a lengthy recovery period she is now living life in a different but fulfilling way.

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My name is Dorothy ……, I get called Dot. In the year 2000, September 2000 I lost my mum and then a couple of months later on January 13th 2001, I lost my sister. I was working in a food factory as a team leader and I was very stressed out. Things were just piling up on top of me. The factory kept asking me if I would work some overtime and I was working night shifts as well as my own full weekend shifts; I was smoking heavily on each break time instead of eating, I was smoking. Me and my partner were arguing all the time because I always had a headache and, if I didn’t have a headache, I was at work and then to top it off we had the 9/11 and that was just absolutely devastating. I think that, what happened in America hurt everybody in the world and I was just so ill with things that were happening around me. I was going backwards and forwards to the doctor’s to get tablets.

They tried me on stronger and stronger tablets and then they told me that because I couldn’t, me eyes were hurting as well they said it could be a form of migraine so they put me on migraine tablets. In the end I was actually, just had this horrible headache that didn’t go away. People who I worked with in the factory were all prepared, they all brought me medication in, they brought me tablets, Tilex, Copaik, there was all these different tablets given to me. And I was so convinced there was something seriously, seriously wrong I went and took a life insurance policy out on myself so that …… and the three kids had some money to bury me with.

Then on September 27th no, then on September 13th, I went round to my local club with …… and couldn’t get near his family. Anyway, so we sat away with these other people and then when the bingo started, all the men got up and went into the bar and all the ladies and just a couple of the men played bingo. So I moved over to ……’s family then when all the men went. When the bingo had finished, ……’s nephew came behind me and he said ‘Come on you, you’re sat on my seat’ and so I twisted my head up and round like that and something clicked in me head and it was something serious that had gone in me head because those shooting pains, were the worst I’d ever had in my whole life. I’ve had three children and never had pains like this. I actually laid my head to the side and rested it on his wife’s shoulders and I was saying ‘Get an ambulance, get an ambulance, there’s something really really badly wrong.’ Anyway I stayed like that till the ambulance came and I don’t know if there might have been a little bit of prejudice there because the, they were picking me up from the local club, I don’t know if they might have thought I was a drunk who’d fallen over. And I got there and they put me, they slid me off their ambulance bed onto the accident and emergency, they pulled a curtain round me and I was making these noises, ‘uhhh, uhhh’ and I know it sounds funny and you might laugh at it but it was so intense I had to make that noise to stop the pain.

Anyway this, the very first nurse came to me and she said ‘Will you stop making stupid noises?’ and so I did, I was like laid there then, with these pains. I actually thought I was going to throw me guts up because I felt so bad. Then she said to me, she actually said ‘I have to get your jumper off’; it was September and I had a light jumper on. So I said ‘Don’t touch me head, please don’t touch me head’. She said ‘Well I’ll have to cut it off then’ and so she got the scissors and she started cutting me jumper off and the doctor came and he said, ‘We’re trying to find you a bed Dot, Dorothy, but we’re not having much luck at the moment’. And I said ‘If somebody needs it more than what I do, let them have it’ and I knew that nobody needed it more than me and that doctor should have known that I needed that bed more than anyone, but there you go. I shouldn’t have said it, because he sent me home. And me and me husband got into the taxi outside the hospital and I said ‘I’m going to die ……’ and he said ‘Well what did you say that for?’ I said ‘Because that nurse that told me to stop making stupid noises, I felt like I was being a nuisance because she had to cut me jumper off and so I was being kind. They should know that there’s something badly wrong with me – they’re the professionals.’

So anyway, we went home and I was walking about for two weeks not knowing anything really about that two weeks. My son had been away with the college which I didn’t know. On the 27th, on the 27th September, two weeks after that first initial admittance to the hospital, I’d been feeling really ill all day and at teatime I said to the kids ‘Will you let your dad know that I’ve gone to bed, I’m feeling very poorly’ and so I went up to bed. …… came home off the two to ten shift and he came straight upstairs because he knew there was something. He said, you know, he just knew that something wasn’t right. and when he came upstairs I was fitting in the bed. So he phoned the ambulance and they took me, didn’t take me straight away, they had to get some confirmation off a doctor first before they could bring me. And I don’t know if that’s all the rules, I’m not sure. So anyway, he got me into the hospital and he booked me in, me name, me age and all the information that they have to take and then they told him he could go home because it was very late, it was like midnight. And he said he got home and he was there for about two hours and the hospital phoned him back and said ‘Please can you come to the hospital straight away, Dot’s in intensive care.’

So …… got to the hospital and they told him that I only had two hours to live, I’d had a massive brain haemorrhage and I wasn’t going to survive it. So then he had to phone the three kids up, …… being 18 at the time, the oldest, …… was 16 and ……was 10. …… had to phone for a taxi and take them all to the hospital and in the confusion, the kids didn’t know which hospital I was in so the taxi driver took them first to the ……and he let …… go in and check to make sure I was or wasn’t in there first before he left the kids. And he came out and he said ‘No they’re in the ……’ so the taxi driver took them to the ……. …… had to phone my brothers and sisters up, we’re a big family, I’m one of ten and he phoned one and told that one to phone the rest of them and they all came to the hospital to say ‘ta ra’ to me. My brother phoned my brother in Cheltenham, I have a brother who lives in Cheltenham and my brother in Cheltenham, …… said ‘Shall I come straight through?’ and …… said ‘No because she’s only got two hours and it’s going to take you four to get here.’

And so, then they all came to the hospital and I laid there for actually two and half months in intensive care. I was put into an induced coma, medically induced coma and whilst in the coma I got three lots of pneumonia, so it was like, they’d been told I had two hours and the doctors lost me a couple of time, my heart stopped a couple of times and they had to bring me back. Then I got the pneumonia and then I got, my kidneys failed and so they had to transfer me in an ambulance from the …… to the ……to a dialysis machine. But something happened on the way to the hospital. The ambulance apparently went over a speed bump and it set my kidneys working again, so when I got to the ……I didn’t need to go on the dialysis, because my kidneys had started working. But they kept me in ……and my family and …… were just getting told all this bad news, every, every time they went up there it was like ‘Dot’s not going to make it. She’s not going to make it to, we’re going to give her to the weekend and then that’s going to be it.’ They tried turning my life support machine off and because there was a little bit of activity there, they turned it back on again.

And then I got septicaemia and that was the one where the doctors were more afraid than anything that I was going to die. And then, after all of that, after me getting through all of that they started taking me medication away and started letting me wake up and when I woke up, I was blind because the blood, with it being a massive bleed in the brain, the blood had gone to the eyes and they got someone straight over from the eye infirmary to let me know if it was going to be forever or just, you know, if it was going to be, just for a little while. Anyway the optician said that the blood would saturate back into my body, away from my eyes so that was some good news. But I wouldn’t, at the time I wouldn’t have been bothered because I was still alive and even though the first thing through me head was ‘I won’t be able to see the kids’ school photos – who cares, as long as I can touch them’, you know.

And then there was the road to recovery and so they took me out of intensive care and they put me on to high dependency and I can only compare it as going from Marks and Spencer’s to Netto. It was awful . There are some absolutely beautiful nurses and they all got rewarded from me and ……, from all of the family, those nurses who cared, who got stuck in, will always be rewarded, always be rewarded those good one. And the bad ones, well you know, there was the nurse in A&E telling me to shut up making stupid noises and then there was one on high dependency who had to take me for me first shower. And because it was the 27th September that I’d gone into hospital, I’d missed me birthday so this was a good opportunity for me husband to buy me nighties while I was laid there. They were my birthday present, nighties. And this nurse got me into the shower room and she said ‘Come on then, start taking your nightie off’; I was actually sat in a chair, I must have weighed seven stone and I was like that in the chair, a little hunched up 43 year old who was blind, who’d just gone through some terrible trauma and who didn’t have a clue what was happening to me. I didn’t even know that I was in hospital, I didn’t know that I was in a shower room and trying to get a nightie off when you’ve got no muscles is, is, I can only describe it as so painful, it was the most painful thing that I’ve ever had to do. The buttons on this nightie, what my husband bought me, were tiny little buttons and all this nurse had to do was actually lift it over me head but she expected me to open every single one of these buttons and my hands were shaking and I couldn’t get hold of the buttons because of the shaking of my hands and then eventually she just said ‘Come on’ and she just took the nightie off me. And she said ‘I hate this job I can’t wait to get back to my office job’. And that really really hurt me as well because then I had an administrator giving me a shower who didn’t like little limp bodies and wasn’t over keen on people with tubes in their noses and their throats. And she, that nurse as well as the nurse in A&E should have been working in MacDonald’s frying beef burgers as far as I’m concerned. But you know, the rest of the nurses gave 100% and it’s those nurses who we’re so grateful to.

Then after going from, oh I’ll stay with high dependency because they started taking tubes out of me. They took tubes out of me neck, out of me nose, out of my throat, out of the tops of my hips, the tops of my, the sides of where my lungs are. I just had loads of wires all over me but the most important one I think was the catheter. Because once that got taken away from me, I couldn’t feel that I was actually weeing myself in the bed. I didn’t, I knew that I was doing it but I couldn’t stop it from happening because I had no control over it. So this, this night, the very first night of not having the catheter in, I pressed the buzzer and the night shift nurse came to me and she said ‘What’s up Dot?’ I said ‘I think I’ve wet the bed, I’ve wet the bed’ and so she said ‘Alright then’. So her and another nurse got me out of the bed and changed the bed, changed me nightie and got me back in it. And then it happened again. I wasn’t in control and I couldn’t do anything and I pressed the buzzer and the night shift nurse came. And she got me out of bed and she stripped the bed, put me a new nightie on and put me back in the bed. This happened three times and the next morning she came to my bed before she left work and she said ‘Dot, I hope you know you’ve pressed that buzzer three times through the night, don’t be doing it again tonight.’

She may have been only messing on, I have no idea but it was another one of those horror stories where you just want to put your head under the covers and not be there. And high dependency I thought was like high dependency because I was highly dependent on everyone in there, in that hospital – because I couldn’t eat, I couldn’t lift a spoon and I was waiting for nurses to come and feed me and those nurses are so unbelievably committed and brilliant; these proper nurses. And they would try their best to get round every single patient to try and feed them and it was mad. And so my family started coming up and they were not only feeding me, they were asking the nurses ‘Do you want us to feed anybody else as well?’ And my family, and not only my family but other families did it as well. They came up and it was like a big family actually where everybody just helped everyone.

And then it was time for me to go over to the ……and that was just fantastic. Those physiotherapists are amazing. I didn’t know things like this went on in hospitals, I was just a normal everyday person who got the kids up for school and got them ready and made their teas and went to work and all these kinds of mundane stuff that you have to do every single day of your life. And I didn’t know there was actually people in hospital getting fed by nurses. And you know I even wanted to volunteer when I got out of hospital to go and help because it’s such a fulfilling thing to do.

And anyway, me next stop as I say was ……and that’s where my rehab started. They gave me a lovely lady called …… who’d worked in the physiotherapy department all her life. She was now in her 60s and ready to leave and thank God I got her because she was so amazing. She took me down to the rehab into, in my wheelchair and I was doing small things first. I was doing a peg from that line to a peg to this line. It was all like, really, really hard work getting my muscles in my arms and fingers working first. It was really painful and, but it took me probably a couple of weeks to accomplish it properly and then they started on me legs. And the two nurses got me out of, two physiotherapists got me out of my wheelchair and they put me on the horizontal bars and I had to walk along the horizontal bars. That was so intense and the pain was so awful but you know, she said to me, this physiotherapist ‘Dot, you know, don’t cheat yourself, do everything possible that you can because if you cheat yourself, if you cheat on things that I give you, you’re just cheating yourself’. So she said ‘Anything I give you to do, I want you to do it as much as you can and just aim to be walking again, aim to be using your arms again’ and she, she just took my heart and made me work hard. And I think it’s because of that lady that I’m where I am today because she just, she was wonderful. She gave me some play dough one day and I had to roll it into snakes, lots and lots of snakes I had to make and she told me to do my name. She said ‘Right, make your name out of it’ so I did D .. O .. T and it took me about probably half an hour and as she came over to me and I said ‘I’ve finished’ and she said ‘What have you done?’ I said ‘I’ve wrote my name’ She said ‘Your name’s not Dot’; I said ‘It is.’ She said your name’s ‘Dorothy Peggy Sue Eland’, right, so that meant I had to make loads more worms and I was there for about three hours just doing ‘Dorothy Peggy Sue Eland’ name, anyway at that you know, this is heart-warming really because my husband came into the rehab room, I don’t know what made him come that day ‘cos he only used to come on visiting times, he never came in-between times. And when he saw me name on the table, he was like proper puzzled, he said ‘What’s that for?’ I said ‘Because I have to start using my fingers, this is important’ and he just laughed his head off. And what else, what else can I, I’ll just have to stop and have a little think.

I Weights on ankles?

D Oh yeah, weights on ankles yeah, I was walking around like, I thought I was like someone who’d been to jail in one of those old films because they had these weights round me ankles. I had weights round my ankles, round my wrists and I also by then got a zimmerframe. And that was funny, the zimmerframe was funny. Like I’m 43 year old with a zimmerframe, I’m blind, I’m walking with weights on my ankles and me wrists and it was just dead good fun. And we had to go backwards and forwards to our beds with all this stuff you know and the people in the ……, the patients in ……, we were all a big family because it was rehab. And that meant that we were in there for a long time. I was in rehab for two and a half months in …… and you know you get to know the nurses and the doctors and also the patients and we all just rooted for each other. If one started walking one day, we all used to clap and shout ‘Come on, you can do it.’ It was just so much fun and we even used to share our sweets with the rehab, they were sweet mad. They never used to let us in unless we had a bag of sweets with us (laughter) And then came the sad day that I had to go home. Because I loved it, I absolutely loved ……so much I even said to the nurses one day, they said ‘Dot, you’re going home soon’; I said ‘No please don’t make me go home, I love the carrot soup too much!’ I don’t know why but I loved that carrot soup, I don’t know who made it, it was good.

So then I got to go home and give me kisses and me cuddles to everybody. And I was going back though for outpatients and every time I went into outpatients in …… they always let me in to go and see the patients who were in there with me. And my physiotherapy didn’t start, stop when I got home because …… took over it, my husband. He’d married me after the brain aneurysm and he would start me off like walking around the house, making sure I didn’t sit down for very long. He was giving me a duster, it was just an excuse so he didn’t have to do it I think! And then we started, he started taking me outside and we would go to the gate and back and it’s really really hard work you know

I Were you still blind then?

D I was still blind as well, yeah, yeah I was still blind. And the kids were terrible for still leaving their shoes out for me to fall over but I never fell, …… did but I didn’t. And anyway, then we started going further with our walking. He would take me to the next door neighbour’s gate. And then after I’d done that as perfectly as I could, over an amount of time, he would take me to the next gate further down the road until he actually got me round to our shops, our local shops. So ……was part of my physiotherapy as well. …… outpatients had got me into a gym at the …… swimming baths and that was really good, I loved it in the gym. I did a little bit of charity work while I was in there for Zoe’s Place. Then from the gym, yes it was just like ……’s sister gave us a ski machine in the front room to make sure that I really, really, it was important for me to keep my legs moving because I’d got this thing, they’d had to do a muscle test on me, took a sample of muscle, biopsy I think they call it, and they found that because I’d laid there for so long, I’d got this muscle wasting disease called atrophy and I was on medication for that. But you know, at the end of the day I’m alive, I’m here to tell the story, I’m here to let all you people know who are going to be nurses, doctors, physiotherapists, OTs, please be kind to your patients because they take it with them for the rest of their lives.

I remember all the good nurses as well as the bad nurses and when I think of the good nurses, the one who used to, there was one nurse in particular, who used to bring her own moisturising lotion into the hospital and put it on my legs because my legs were shedding skin like a snake sheds its skin, I was shedding my skin as well. But this one particular nurse used to come and give my legs a little moisture. And there was the nurse who put me in a wheelchair before I came out of hospital and she took me round the hospital, he took me, it was actually a man, ……, he took me round the hospital. And it was just all the nurses are just so absolutely wonderful and I thank every single one of them except them three who should have been working in MacDonald’s!

I And what about the day centre you went to for the blind?

D Oh yeah, the day centre. I got social workers .. when I got home there was a note waiting for me and there was a social worker from the visually impaired. This is where things get a little bit messy because I wasn’t just visually impaired but I also had this neurological illness. And the two don’t really mix together. Because I could have really have done with a neurological social worker instead of the visually impaired social worker. Because this lady tried her very, very best to get me some respite and that’s a word I’d never heard either before, very well – respite. And it was in the blind school, on the …… ……. These people she told me, who are in there are all 40 years my senior, but I should enjoy it .. and so I did. I went and they played cards, they played dominoes, bingo with dominoes and they do quizzes and then sometimes they get people in to help do a little dance, you know there’ll be some volunteers come in and they do a dance with all of the blind people in there. And there was this one lady in particular, she didn’t like me very much I don’t think, I don’t know if it’s ‘cos I took, I don’t know if she might have been the popular one there and then I went and I was like the one who everybody wanted to sit near and I don’t know what happened but she didn’t like me.

And my eyes were starting to get a little bit better then as well, the blood started saturating back into my system and I started being able to see things from the, my sight was coming from the side so if I wanted to see anybody sat next to me, I had to look ahead like this. If I needed to see anybody stood behind me, I’d just turn me head half like that and then I’d be able to see them out the corner of me eye, that way. That’s how my sight started coming back. And I could see this lady was feeding herself properly ‘cos I could see out of the corner of me eye that this lady was, I don’t, I really was convinced this lady wasn’t blind, I thought she was putting it on. And so I told some people, ‘I think that lady’s not really blind’ and then one day this lady came up to me and she offered me out, she’s like in her 70s, she wanted to have a fight with me, she was grabbing me arms and throwing me all over the place so we both got barred out of the blind school and so then my social worker had to think again ‘What can I do with Dot?’

And so, she came to me and she said ‘Dot, I found out there’s a charity called Headway and it’s for the brain injured’ and she said, ‘it’s in Ward 26 of the hospital, ……, would you like to go along there?’ and I said ‘Oh yes please.’ So she sorted it out for me that very first time when I went. And I got there and the room was full, apparently there was this talk on, on this night that I was going. And they have doctors and nurses talking to people, families and carers and the neurologically brain injured, you know. And it was to let people know how an invisible injury actually affects people in everyday life. Where people think that you’re a normal, everyday person but actually you’re not. You look normal but you’ve got this brain injury and you’re very depressed one minute and then you can be very happy the next …. now what’s that word? Euphoric; yeah, euphoric’s the word for it. You’re just, a brain injured person is just up and down, up and down, up and down all the time, they’re just like, they just don’t go on a steady level all day long. I sometimes, depending on how I’ve got up, I can be fine for an hour and then I can, if I’ve been putting washing in or pottering about I start getting tired and then I have to have a sleep. And then I’ll wake up and I might wake up grumpy. Every day is totally different and I would say every two hours is totally different, you just go from one extreme to another in seconds. And it was hard for my family really because I wasn’t the same person anymore. I had mirrors all over the house, I had, I started buying lots of mirrors and I even put mirrors in the kids’ bedrooms. Because I used to go in there and those mirrors were for me to look into, to see if I could find myself because I wasn’t Dot anymore, I was somebody else. I actually went very religious and very religious and very, this happens as well sometimes, I forget, my memory’s really bad

I (inaudible) football

D Oh and football! Oh God, football mad, I love football so I’ve got this religious thing and this football thing. Now I was watching more football than my husband and he was going mad with me because it was the World Cup and I just didn’t want to watch the England team, they weren’t in it for very long then anyway, I think they were put straight out. I was wanting to watch Japan, Africa, North Korea, South Korea … I was watching every single match on that telly and my family were really fed up of me but that was the new me and they had to get used to it! I wasn’t the old me anymore. How else was I affected?

I You find social things a bit difficult don’t you?

D Oh yeah. Things happen to me where I don’t like to go out, I don’t like to be with normal people. I consider myself now, it’s a label, but it’s my label; I’m brain injured and I have two jigsaws. That’s the neurological jigsaw and this is the normal jigsaw. So this normal jigsaw has all people in it who don’t know me, who are strangers, friends, people who haven’t got a clue that I’ve got a brain injury. It’s like I’ve got a piece of the sky and it fits in one piece, that piece doesn’t go in with normal people but this jigsaw here, this piece of jigsaw here is for people who’ve got brain injuries, disabilities, physiotherapists, OTs, consultants, neuroscience, anything to do with .. this is my jigsaw, this piece of jigsaw goes in perfectly in there. And I like to be around people who understand neurological issues than I like being with people who I look at as normal.

My social life was really, really good. I used to go round to the club a lot with my husband for a game of bingo. But that’s stopped – because I felt that people were judging me. They probably weren’t, these people were probably so lovely, these friends were probably so lovely. But then I felt like I couldn’t do that anymore and I didn’t want to be around them. If there was a game of bingo going on at Headway I’d have been straight there, you know, because Headway were my life then. Headway took over my life and they gave me things. They gave me understanding, they gave me trips out, they gave me my life back. A life that I like and they’re caring and they do things with us. Just a couple of weekends ago I went to Kielder. Now this is where things have really, really started for me. Because it was a weekend away but I didn’t want to go for the full weekend. I was a bit scared even of going for that full weekend because I get so tired and I didn’t want to be putting on people. So I went for the day, I got someone to take me through. Headway secretary took me through and I did something that I’ve always wanted to do and I never would have been able to do it without Headway.

I wanted to climb one of those walls. You know what the army do, they have, you know in the town, go into the town centre sometimes, the army and they’ll let the kids and that have a little climb up; and I’ve always wanted to do it and never been able to. And there it was! There was this wall, and I climbed up that. There was also a zip wire, I did the zip wire. And it was just wonderful, wonderful, wonderful fun. And I thank Headway immensely for that. I’ve also, Headway even got me into the university to tell my story because it’s important that people like you who are watching this film now of me, are going to remember that the nice nurses get rewarded and the nasty ones just get remembered for being horrible. You know, you go and moisture someone’s legs, moisturise someone’s hands, stroke their face and you will be forever in that person’s thoughts for all the right reasons and that’s what’s important with the nursing care. What else was it I wanted to say?

I Redcar ROC?

D Oh yeah, Redcar ROC, I was there from the start. This was another thing that my social worker, people, do you know something, people are so afraid of social workers, they really are. I’ve, like grew up in just a normal town where they said the social workers come in and they say ‘Oh don’t let them in your house’ and social workers have always had this really bad label, but you know I love every single social worker that worked with me. Because they were there for me, they were there to help me and they did help me. This particular social worker who got me into the blind school, she found ROC for me, Redcar ROC they call it, it’s a disability thing that I helped to set up. I was in it from the beginning but then it started getting like massive and it was making me tired; I enjoyed it but I started getting tired but also social services had to step back from it. Because they’d established, they’d helped establish this disability centre in Redcar and Cleveland, they had to step back and so my lift got took off me and that meant my support was taken away from me. I know it was like my husband could arrange something for me or I probably could even have done it but you know, you don’t, it doesn’t happen. This thing that’s in your head, like I’m loving this, I can do this now, they have sorted this out for me, suddenly it goes and then you’re left then with ‘Now what do I do?’ So the social worker came to me and she said ‘Right Dot, they’ve told me that you’re not coming anymore.’ I said ‘No, it’s big and it’s tiring and you’ve took your support away from me’ and she said ‘Right, Headway is a brain injury charity in James Cook and …. ‘ oh no, I’ve already done that haven’t I?

I Well yeah but

D Well it was the social worker, what I’m saying it was actually the social worker who got me into Headway and it was the best possible charity or the best possible thing she could ever do for me. I’ve been with them for like six years now and I like to be at a drop in when we get a new person with a brain injury or a carer in who’s not been able to look after someone very well, who’s got a brain injury … were you there? And I’m there to tell my story and to listen to theirs and every story is unique and important.

I So you help other people now?

D I help other people now and do you know my sister in law, she’s Catholic and she brought me this fridge magnet and it says on it ‘For I know the plans I have for you says the Lord.’ Well I used to walk in and out of my kitchen and stand in front of the fridge, with the door shut, looking at the fridge and my family would be stood there saying ‘Are you there again Mam?’ … ‘Yeah I am, leave me alone, I’m all right.’ And I used to say to this fridge magnet ‘What plans have you got for me? What are my plans? What do I have to do?’ and you know, I know what I have to do, I have to spread the word of my illness and my story and all the good things and all the bad things that happen. To let the world know that I’m here, I’m still here and I’m going to help as many people as I can with it.

I That’s great. Can you talk a bit about the housing?

D Oh yeah, the house, yeah. I had a commode, social services, the OT sorry, this is the OT’s job. She got me a commode

I That’s when you came out of hospital?

D Because when I came out of hospital I still couldn’t get up the stairs very well. I didn’t have time to get up stairs to go to the toilet, you know because I had two hand rails, they’d put me another hand rail on but I was still very slow getting up stairs and so they said ‘commode’ was the answer. And my house at the time was only a front room and a kitchen so when the kids were in, I’d be in the kitchen if I needed to use it or if the kids were in the kitchen, I had to take it into the front room. It was just a really massive carry on that wasn’t really any good for anybody and anyway, the OT wrote down that I needed a bigger house with a downstairs toilet because my husband’s a train driver and I was disturbing him. He wasn’t getting the right amount of sleep he needed and the OT was more worried in case him having an accident because I wasn’t sleeping properly and these are the things that you as OTs, you will know all this. I mean we’re just ordinary, everyday people who came out of hospital and didn’t have a clue what was going to happen to us.

Our lives were took over by social workers and OTs and they did their very, very best for us. We were like, …… was like ‘Oh Dot will be coming home soon’; not thinking that everything would be the same because it wasn’t and thank God for social workers and OTs. Social workers, they made sure that I got things like from the visually impaired because they got me a talking book. It was a cassette player that played a story to me, instead of reading, because I couldn’t read a book anymore. They got me something for the phone as well, it’s a 195 number. I phone that number and I get my own personal operator who will, who tells me numbers of even family members if I don’t know the family members. That is something for the visually impaired, things that, there was a thing to put in my cup of tea to say when I had enough water in it, it would beep. All these things that exist, what me and my family didn’t know existed. It was like ‘BANG’ we’re there, an ordinary family with a brain injury and a blind person and so I got, I got a wheelchair, I got the new house, they got me a beautiful four bedroomed house with a downstairs toilet. I waited just under a year for it but, you know they never stopped coming in to make sure I was ok. They, these OTs and these social workers stayed with me, actually they’re still in my life now if I need them to be. because of the situation, with it being a neurological, if I do actually need anybody at all, the phone book is open to them. It’s not a closed book, the same as I have a psychologist, I have a psychologist at …… hospital and I only see him when I need to see him. I phone him and I say ‘Please could I come and see you because I need some help; I’m feeling lonely and I’m feeling sad’ and whatever feelings I’m feeling, I go to see this man and I come out like he’s just took a ton of bricks off me. my brain is my motherboard, my body’s my computer if too much goes into my motherboard, things happen to me, I get stressed, I cry, I put myself away in me bedroom and my psychotherapist?

I Psychologist

D Psychologist, I get mixed up with words as well, this is because now my brain’s starting to tire and now it’s trying to get the words properly now. So my psychologist is there for me whenever I need to see him. What a lovely man. And so for, it’s ten years since I had this brain haemorrhage and even after ten years I’ve still got lots of support. Lots of support, but I need it as well

I You do

D You know

I Yes, uh huh

D And Headway have put me into university, that’s another thing about Headway. Headway’s put me into the university and that’s now, this video is for the university

I That’s right, yeah, yeah

D So all these, do you know I once did a charity day with Headway in Kelso Races? And all we had to do was stand with a bucket for people to put money into for us and do you know there was this one lady who came up to me and she said ‘Oh I’m so sick of charities’ and she walked away from me and I just thought ‘I hope you never, ever have to need a charity after what you’ve just done’, ‘cos charities are so important. Charities, doesn’t matter what it’s for, for cancer, for Parkinson’s, for any neurological, any kind of neurological injury, any kind of childhood, any charity that exists today is there for people like me and I do use that charity and I thank God for that charity.

I Yeah, yeah that’s great Dot. Ok, just a few things I wondered if you’d like to add?

D Yeah

I One was about the bathing and the trouble you had with the bath, yeah

D Yeah. Because of the brain haemorrhage I have short term memory loss and even now I have short term memory loss and that doesn’t get any better really. And when I was on my own one day, I decided to run myself a bath and I put the plug in and I put some bubbles in and I turned the taps on and I came downstairs and I don’t even know …. I’d come downstairs, I don’t know what it was for but I had to come down the stairs and then I got down the stairs and forgot to go back up. And I started watching the telly and then all of a sudden water started coming down the walls and through me light fitting. And I was like ‘Where is that coming from? What’s happened?’ and I got upstairs as fast as I could and the bath had run over. Oh God no! The ceiling when I came back down, the ceiling was on the floor. So I had to phone my husband and let him know and he said ‘Just don’t touch anything till I get home’ and he got home as fast as he could and he said ‘Dot, don’t do that again, don’t have a bath no more while you’re on your own’ and I said ‘No, I promise I won’t’ and God it was only a couple of months after and I went upstairs and I put the plug in and I thought, ‘I always forget about this, I haven’t to go downstairs, I have to make sure that I stay with this bath’ and I put the plug in and I went out of the bathroom to get a towel and then I forgot to go back in the bedroom, in the bathroom and I came downstairs and it happened again. And that was it, that was just absolute the worst thing that ever happened again because it was all just new, we’d just got new plaster, new wallpaper and I was wrecking the house again with another flood.

And also, actually after that happened, the Blind Association gave me an alarm for the side of the bath. That was for, the alarm, once the water got up to the alarm, the alarm started beeping so that was to tell the blind person enough water was in but for me it was to tell me that the bath was full! But after that, after having the ceiling down twice, my husband decided to take the bath out and it was safer for us to have a shower. And I wasn’t allowed to cook, I’m not allowed to use the cooker. I can myself a sandwich but I’ve not to turn any heat on the cooker at all in case I burn the house down. These are all things that we found out after we’ve come home. When we’ve come from hospital, all these changes in my life had to be made and it’s changes that normal, everyday people who don’t go through things like this, don’t know about, they don’t know how your life’s just changed just like (clicking of fingers)

I Yes, yes

D You know it’s so different my life. I love my life, I absolutely love my life and I thank God that the doctors and the nurses are so clever and they actually saved my life

I Can you say a bit about what they actually did?

D Yeah. My operation was done through my inner groin, through my groin all the way up to me brain, for the blister that had, the vein that had burst, the vein had burst they went up and I actually don’t know .. I know there was some kind of gluing took place and then they put some titan, millions of titanium little coils that no one would probably be able to see with their eyes I don’t think and they put those coils into me brain to block the hole up. At the moment, it’s stable but the blood has been going, pushing into the, the blood’s been pushing back into the titanium and made it look like a mushroom now so I’ve got a little neck on and so the neck and the blister look like a little mushroom. But they’re looking after me, I’m not worried about it, not one bit. The nurses and doctors check me regular to make sure it’s all still stable and while it’s stable, no treatment to be done. but if it moves then I have to go and get whatever they have to do

I And is that an angiogram?

D That’s an angiogram yeah. I have angiograms twice a year and brain scans twice a year. So it’s like every three months I get something done. They haven’t forgotten about me

I No that’s great isn’t it

D I make sure they don’t!

I So the restrictions on your life now

D Well yeah there are

I they’re not too bad are they really?

D The restrictions on my life really are just, I can’t go on fairground rides

I Right!

D ‘Cos I LOVE fairground rides, well I’m not allowed on them now in case I get too excited and burst a blister. But though, actually I’ve made a very, very good recovery and I’ll never be able to work again, I’ve been told I’ll never work you know. But so what! It doesn’t matter, I get me sick money, I worked before I had the aneurysm and I get me sick money and I’m entitled to it, that was my insurance, I paid national insurance in case anything happened to me, in case I need to use the insurance and I did have to. But apart from that, you know, I’ve been pretty lucky apart, you know there’s just little bits and bobs where I don’t like to go out. I have panic attacks, but I have panic attacks where I actually start crying. Like I remember saying to you …….that I can go into Asda for the Christmas shopping and it will be so busy and all of a sudden I start shaking and I start crying and me husband has to get me out, that’s my panic attack. Everybody hates Asda at Christmas but the panic attacks are the worst ever. In fact it’s like, I don’t know if people have, who have little epileptic fits, I don’t know if it could be classed as something like that. I’m not sure but it’s a horrible, horrible feeling. It just comes and I have to get away. Yeah but me husband’s sort of like trained in that now, he just shoves the trolley somewhere and he says, or he’ll give the trolley to someone and he gets me out

I Gets you out, yes, yes. And you don’t drive do you?

D I actually do drive

I Oh you do drive? Alright

D Yeah I do drive, but I only go to two places. I go to Middlesbrough to the same car park and I’ll try and get parked in the same place. I’ll even wait, I’m quite happy to sit and wait in the car, on my own for a space to come because I know that then I know exactly what space I’m going back to for me car in Middlesbrough. I’ll go, I only have a certain way I go into Middlesbrough, I have my own way, people use alternative routes to get in to Middlesbrough town centre but I always choose the long, slow route and I feel happy with that. I go to Redcar but I have my own little space where I park there and I wait for it. and it’s mad but Middlesbrough and Redcar is the furthest I’ll go. I don’t like having anybody in the car with me unless it’s me daughter, me youngest daughter, she’s 20 now, she was 10 when the aneurysm happened; she’s the only one that makes me feel comfortable when I’m driving, you know she’s

I ‘Cos you have to focus

D she doesn’t hassle me, she doesn’t say ‘Mam!’ You know I’ll tell you another thing as well, what I did with me ten year old daughter. Not long after I’d come of hospital, she wanted me to go to Middlesbrough with her. I was well on me legs and I said ‘Yeah, ok then’ and we had to go for the bus. And she ran upstairs on the bus and I thought ‘Oh God, I’m going to do it, I’m going to get up there’ so I went up on the bus and there was only me and …… upstairs and it was a rainy day and all the windows were steamed up and I started writing on the windows and me daughter was like horrified, ‘cos I started writing ‘Camilla is a slut’ and then I wrote ‘Princess Diana was murdered’ and was writing all these things all around the bus and my daughter was just so shocked with me and so disgusted with me she actually went downstairs on the bus and didn’t want to be anywhere near me. She just sort of like flew down, because I was like, these windows were mine and I was getting my messages out, yeah? And it’s things I needed to do

I Yeah. So you said you feel you have to get things out of your head sometimes?

D Yeah, that’s right. I don’t like anybody putting anything, I don’t like anybody telling me a secret, ‘cos that’s interfering with my motherboard. I don’t, I have to, if I’ve got something on me mind, I have to tell someone straight away so that it comes out of my head. I don’t like anything in me head. I like to be able to sit with no thought at all and I can do that if I’ve got nothing eating away at me. I don’t do letters, I don’t open letters unless they look like nice ones. If it’s me birthday and it looks like a birthday card I’ll open it but ……has, I make sure ……has all the stress, I don’t have none. So, yeah little things like that are different. You know, ……knows that I won’t open horrible letters, if it’s a bill or anything like that. and I still actually do, even after ten years still go look in the mirror, right up to try and find myself in the mirror. Even after ten years I do that!

I Yeah, yeah

D It’s just, you just change, you know?

I Yes, yes. Can you say a little bit about the effect on your family?

D Oh, it was devastating! Actually my children were 18, 16 and 10 and the two girls were really quite good with it all; they were playing pillow fights with the nurses. You know some of the really good nurses were even playing with the kids. One nurse brought our …… a Harry Potter book and I don’t know if it’s the medication that made me start having bad dreams while I was in the coma, I think you can hear stuff. I think the doctor’s right, you can really hear stuff because I think I had a couple of downers off me medication with witches and stuff and I think that must be because of Harry Potter. And, what was I talking about there?

I Effect on the children

D Oh yeah, yeah and so the girls were really not, they were affected but not in the same way as my son was. ……is even still affected now. Our ……, if our ……was sat here now with us, our ……would be crying his eyes out. ‘Cos he can’t deal with it still, and I don’t know if it might have been a good idea for the kids to have some kind of counselling. Even ……, ……could have done with it as well because you’re just landed in this situation that you never think you’re ever going to be in, in your life. They’ve watched me for two and half months on life support, going through all these awful illnesses while I’m on life support and they’ve been told that ‘She’ll be going at the weekend’ you know, prepare for the weekend because she won’t be here at the weekend. You know and it’s hard and it’s still hard on them now because ……never gave up on me. everybody else did, lots of people gave up on me, ……didn’t. My sister in law even went and bought a black suit because me Mum had died September 2000 and my sister died a couple of months later, January 2001 and that happened to me in September 2001. And so because me sister in law had wore this black suit for those funerals, she said ‘Arnie, I’m not wearing that suit again for our Dot’s funeral, I want a new suit’ so he told her to go and buy one. which she did! So anyway, after I’d come out of hospital, her brother died and she wore that suit for her brother and I was in the car with me ……and …… were in the car and she said ‘See this suit? I bought this for your funeral.’ I said ‘Did you?’, she said ‘Yeah that’s how far you’d gone, for me to go and buy this suit for your funeral.’

I And were you saying that one of your daughter’s got picked on?

D Ah yeah. Our ……’s ten year old and she was just actually waiting to go, she was actually nearly 11, she was ready to go into the big school, into the secondary school so she was ten and in the February she was going to be 11, the time when she was getting ready to move anyway. there was this girl who lived round the corner from us, she wasn’t even in the same junior school as our ……and she started, ‘cos our ……had to walk past the house to get to her school, she started picking on our ……, kept telling her that she was going to batter her ‘And walk past our house again and I’m going to batter you on your way back’ and our ……was really, she’s a caffyhearted kid our ……and none of my kids are fighters. You might get these families where some families will batter anybody but then you get my family who don’t, who are gentle. And on my first visit home, …… confided in me that she’d been getting picked on by a girl in another school and so straight away I phoned one of my family members up and said ‘Please will you go and sort it out.’ That was when I couldn’t, that was when my first visit home where they had to find out what things I would need, that was the time when she told me and she sobbed her heart out and I sobbed me heart out because I wasn’t there for her. It hurt me because I was in hospital and I wasn’t there for her and she didn’t tell anybody else, just me. but we got it sorted out.

I That’s good

D Yeah. See I think kids, who are vulnerable, get targeted. I don’t know why they want to do this, why this girl wanted to be so horrible to our ……. Because she knew, she lived round the corner from us, she knew ……’s mum was in hospital, really very, very poorly and she took it on herself to make that kid’s life even worse! So sad, but it was sorted straight away

I Oh that’s good, that’s good. And did you say somebody else in your family had had an aneurysm?

D Oh me brother did. My brother had an aneurysm, he’s the oldest one in the family. Me Gran, me Mam’s Mam, she died of an aneurysm when I was just a small child, then my brother had one about ten years before I did, so that’s 20 year ago for my brother. He survived it, but they actually, I don’t know if the operation was around when he got his done but they had to actually cut into our ……’s head and clamp his aneurysm and yeah, then me as well. So it is actually, it can be classed as hereditary, the same as cancer and heart disease, aneurysms are as well

I Sometimes, yes.

D So then all my family were worrying in case they’re going to have aneurysms then. Because once the doctor said it can be hereditary,

I Oh it’s stopped for some reason (No it hasn’t – h)

D Has it? How long has it been stopped?

I It’s started again. It was going a minute ago

D Oh right

I Yeah can you just go back over your brother had

D My brother around, it’s ten years from my aneurysm so it will be 20 years for his. And I don’t think the operation could have been around when he had his aneurysm because they had to cut into his head and clamp his vein. Where they actually went through my groin, all the way up and put little titanium coils in so it’s more advanced now. Medicine’s just amazing

I That’s great

D How amazing is that?

I It is isn’t it?

D Yeah, to know that we’ve got such a clever doctor, surgeon in our hospital that can do that

I Mmm, it is exciting

D Yeah and for all yous people who are waiting for hip operations and they get cancelled, don’t worry about it because while your appointment’s cancelled, they’re saving someone else’s life

I Yeah, yeah

D So don’t be so hard on the doctors, it’s not their fault

I Ok

D And for the nurses as well, for the nurses on high dependency when I said, I compared intensive care from Marks and Spencer’s to high dependency in Netto it’s because there’s such a bad shortage of nurses. Those nurses are run off their feet and I’ve actually laid there and I’m watching them, all they are is, all I think most nurses are, are chambermaids, they do so much bed changing you know. They’ve got a horrible, horrible, grotty life, working life and those ones who are committed are the best. Yeah

I Do you want to just say that bit about when ……had to help you in hospital or do you not want to put that on?

D Yeah that’s ok. Where ……was

I Putting cream on

D Oh right, yeah

I It’s up to you Dot

D No ‘cos this is important, this. There was a time when I was in high dependency, they took the catheter out and I had to start asking for the bedpan. And the nurses were bringing me the bedpan and they were taking it away but they weren’t actually wiping me. and so, for all that time, two and half month in intensive care, I was looked after 100%, nothing, no better treatment. Then on high dependency I started getting a sore bum and it was getting sorer and sorer because no one was wiping me, not one person did. And when ……came up, it was probably after a couple of days, I said to him ‘……, please will you pull the curtain round and have a look at my bum please, because it’s really, really hurting me’ and he said ‘Oh God I don’t believe it; you aren’t half sore’ so he went, he went to the corridor and had a little chat with the nurse to let her know how sore I was and she said ‘There you are ……’and she handed him a jar of Sudocrem and she said ‘Now if you go to that bed over there where that little old lady is, there’s some gloves in a box’ she said, ’just go and take some gloves out of the box.’ So ……went over and took some gloves out of the box and the little old lady started shouting ‘Thief, thief, thief’ and ……’s turning round, didn’t know what to do. Anyway, he was the one who looked after me, he was the one who applied the cream. You know, so your family, and your family are important when things go wrong. you know they do need you, they need you to feed them and they need you to look after their needs because the nurses, I know there’s a shortage and I know the government’s going to make them even more scarce but you know, look after the person. That’s all I’m saying, just wipe the person, you’re a nurse, that’s what you’re supposed to do, you’re in care and we rely on you to keep us healthy

I Yeah, yeah because you’re very vulnerable

D Yeah we are vulnerable. You know like I didn’t even know that I was in hospital. They’d have woke me in the intensive care, gradually and I thought I was at work, in the factory. ‘cos all I could see was lights. I was blind and I couldn’t see, all I could see was colours, I could see shapes of things, I could see the long strip of light on the ceiling, the little blocks of light and I thought I was at work. I thought I really, really was at work. I was confused and this nurse came to me, waited for me to wake up and she said ‘Hiya Dorothy, can I get you anything?’ and I said ‘Please can I have a bacon sandwich?’ and ‘cos I thought I was at work, there was no way I was going to be able to eat a bacon sandwich. You know I had tubes all over me, and I couldn’t have even lifted my hands up to me mouth to eat a bacon sandwich but because I was at work, because I thought I was at work because I was confused, I thought they were coming to ask what do I want for my break. And when ……came up, I said to him ‘You have to give me some money because I haven’t paid for me bacon sandwich.’ You know? And it was crazy. ‘Cos when I got on to high dependency as well, I’ve proper woke up, I’m able to go on to high dependency and I’m sat there in the bed, laid in the bed, not even a thought going through, there’s no thought, I don’t sort of sit there thinking ‘I’m in hospital and there’s an old lady over there and there’s another one over there and what’s on telly’; there was nothing like that. It was a strange, weird feeling that I can’t explain, ever. I can’t explain it, it was just an empty head. I was a shell actually, I was just

I So you weren’t frightened?

D No I wasn’t frightened, I wasn’t frightened, I wasn’t happy, I didn’t have any emotion, I was actually just sat

I A shell

D Yeah, it’s awful, awful and then for nurses to do this to me, to be nasty, you know, you’re vulnerable. I was vulnerable, I didn’t even know where I was and they’re telling me to stop pressing the buzzer through the night. You know?

I Oh dear, very hard time wasn’t it? For everybody?

D Yeah it was but I still can do that you know, I can still, I still like to even sit like that sometimes. I like to feel that, just that nice feeling of not being anywhere, it’s a really nice feeling. Me sister sorted that out for me like, I don’t know if I can tell you. They all got told ‘Don’t anybody say anything to Dot about what’s happened to her. She has to be told gradually’ and so everybody got told, all told everyone ‘Don’t say anything’ it’s got to be gradual. And so me sister came up and she must have been, I don’t know she must have just felt sorry for me a little bit because I didn’t know what to talk about, I was glad that she was there, I was happy that she was there but I didn’t have nowt to ask ‘cos I wasn’t thinking about anything. She said to me ‘Dot, do you know where you are?’; I said ‘No.’ She said ‘You’re in hospital, you’ve been very, very poorly.’ And I said ‘Oh right’ and then she said ‘Do you know what’s happened to you?’ I said ‘No.’ She said ‘You’ve had a brain haemorrhage! And you’ve had three lots of pneumonia and you’ve had a couple of heart attacks and you’ve had septicaemia and we’ve lost you loads of times. We’ve lost you!’ and I was like ‘Oh right.’ And it just didn’t, it just felt like she may as well just have said to me ‘Do you want an ice cream?’ because nothing went in anyway. you know? But the nursing staff were worried in case I had a freak out! which could easily have happened, you know. So anyway me sister was naughty for doing that to me!


I Ok, well thank you very much

D And thank you all as well. Was it ok?