I was her advocate when she wasn’t getting the right care, you know, I was setting up meetings with social services, I was writing letters to directors of social services because I was appalled at the care that she was getting. That she didn’t have the right equipment. Now I’d go along and speak on her behalf. I had her best interests and, and drove, you know, everything. And she used to say to me, I’d be lost without you. And I always used to say, Well then you’ll never be lost because you’ll always have me. But, that was true, was she didn’t have, you know, I was that one person in her life that was, you know, looking after her.

When my mum eventually died when I was about 26 there was an incredibly complex grieving process for me because I’d lost my mum and I’d lost my role actually in life. And I spent a lot of time sort of reflecting on it. But my whole purpose, everything, about who I was as a person had been around my mum. That was my first thought in the morning, it was with me all day, it was what I did. And, you know, suddenly that, that wasn’t there. I was her advocate when she wasn’t getting the right care, you know, I was setting up meetings with social services, I was writing letters to directors of social services because I was appalled at the care that she was getting. That she didn’t have the right equipment. Now I’d go along and speak on her behalf. I had her best interests and drove, you know, everything. And she used to say to me, I’d be lost without you. And I always used to say, Well then you’ll never be lost because you’ll always have me. But, that was true, was she didn’t have, you know, I was that one person in her life that was, you know, looking after her.

So when she died I really didn’t know what it meant to live my life without thinking about my mum. And I felt incredibly guilty I also felt a sense of grief for the fact that I hadn’t really lived and I still feel some of that now. I feel quite angry, I feel like I, you know, I haven’t got a family now. I think that I probably would have done if, you know, if I’d have had the opportunity to have what I would call a more normal life and get married and have parents that come to that wedding and I feel that I would have a family.

And I think that, for me, is don’t realise about the impact of caring for someone. Because it really isn’t just that time, you know, when you’ve got that person that you’re caring for. It’s the long term effect of what that means afterwards. And for me it, like I say it, it impacted my confidence because I thought I was no good academically, I didn’t get a very good job It impacted my relationship which didn’t last, which should have lasted and it’s probably worked out better for us both now but, you know, I think that MS destroyed that and I think it destroyed a part of me really, a part of my childhood, a part of my adult life. I think it has had a, you know, a really lasting effect on me. And I think it has, even things like when we were talking about presenting earlier for the board. Now that’s a big deal to me because growing up I’ve not had anybody that’s made me feel OK. You know, the whole I’m OK, not OK kind of, you know, I’d really thought that, you know, I’ve just not been in a very good place. So naturally not a very confident person and paranoid that that sort of comes out and, you know, that people will pick up on that and that I’m not good enough and all of those things that well probably everybody experiences but I think that because of some of the impact MS had on my life have meant that I have grown up entirely believing that, you know, I just don’t have that confidence.

And I’ve gone on to do two degrees since and I’ve got a good job and, and I own my own house myself. Well actually I’ve a got a few houses, so I’ve actually turned it around and none of that means anything to me because it’s all material. But I guess what my point is that even though I’ve got all the evidence that suggests that I’ve done well and I am capable my fundamental belief I think which is a direct result of caring for somebody and, and just early experiences of I’m no good at school, I keep being told I’m no good at school, nobody really cares, actually impacting on me. So even though in my adult life you can rationalise it for whatever and on whatever level and I don’t really understand it I can sit there and go, Well, you know, I am good enough, but actually I think that it’s such a profound thing, it’s so deep inside me I’ll never change that.

And maybe that’s just a part of who I am and would have always been but genuinely I do think that, you know, if you’re not in a family where you’ve got people that are looking after you and putting their arm round you and giving you that hug and saying, Well done today, that was really good, really proud of you, if you’re not hearing those words and all you’re doing is constantly clearing up after somebody, constantly giving them that hug actually and telling them everything’s going to be OK, when you’re 11, you know, you’re 15, you know, you, you don’t know that it’s going to be OK and it really doesn’t feel OK. You, you’re, playing the parent so you just grow up really yeah, completely vulnerable and you know, unconfident I think is, is what I’ve said. And yeah, I think that is how it made me feel.

But there are some positives as well because to my mind the only way I can sort of celebrate my mum’s life and make sense of it is to learn from it. So [clears throat] I do that by trying to say, OK, well you know, what if I get up every morning and appreciate the luxury of being able to brush my own hair. And I’ve taken my health seriously, that’s a good thing. And if I’m open to other peoples emotions and feelings and genuinely care about other people then that’s a good thing. I do quite a lot of charity work and that’s because I think you just realise what’s important and maybe a bit of me still needs that to be needed, which is obviously that, the role that I’d kind of had with my mum. I was, you know, very needed.

So, the positives are that it, it makes you true to who you are actually and it makes you really realise what’s fundamental in life and what you can’t take for granted. But, yeah, I would say that it does have a profound impact on, on how you feel.

And it’s quite interesting, I’ve often in my mind thought about it and thought almost the MS paralysed me in a way. It, if you, if I think about all of the symptoms that my mum suffered, the, the loneliness, the, you know the inability to do things, the frustration, the, the anger, you know, all, all of the paralysis of the, the, what went with her illness for her also I felt it, I felt it to probably a really unhealthy degree because we were with each other pretty much 24/7 and I was just absorbing all of this and trying to buffer you know, how, how it sort of felt for her.

So I guess I always felt that I had to, and this is, you know, something that I still do now, is I guess I always felt that I had to put a brave face on and be strong and that was my, that’s what I learnt was I had to be strong. I was the strong one. You know, I kept the family together and it, albeit that my father and my sister were almost dropping in and dropping out because my father didn’t, my step-dad, didn’t spend a lot of time at home, Even at the weekends he would go off and you know, sometimes just not be there. And it got to the point where he was staying out overnight and clearly he had found someone else. So again I had that to sort of deal with. And, to try and act as a buffer for my mum that, you know, to try and protect her from, from some of that, that sort of thing.

So I felt an incredible you know I was just completely relied on, I was completely the one that sort of kept everything together and I kept mum going. And sometimes I think that was manipulated and abused a little bit. And I think my sister just assumed you’ll get on and do it and had no concept of just what I was going through really. And we talk about that now. And my step-dad I think he used it as a to manipulate kind of, you know, I can remember things like yeah, I must have been a bit older, I’d got my first boyfriend, so probably about 18, 19, my first sort of really serious boyfriend. And I can remember you know, him having a conversation with my mum saying, Shes going out, shes leaving you again, she doesn’t love you, what sort of daughter is she? And there was quite a lot of that that sort of went on because I think he wanted me to be around, he wanted me to be there because it stopped him from sort of picking up on some of that.

And there were, were times when I just remember just coming home and just thinking I really can’t put up with this anymore. And then of course you would feel really bad for feeling that because it isn’t about you, it’s about that person. So no matter however bad I felt I felt even worse by thinking about how bad I felt and the fact that I was dwelling on myself when actually I could still brush my hair everyday and clean my teeth and, you know, those were things that I’d become so focused on and so aware of that I felt like I couldn’t ever complain about anything. And, as I say, had to always be the strong one but, you know, I could be absolutely breaking inside.

And I think I felt angry that even people with MS, because we knew a lot of people through the MS society which I did used to take my mum to, and actually that was a real sort of lifeline, but even people with MS didn’t seem to be quite as unwell as my mum. My mum just seemed to be really, really sick. So wed go to the MS club and there would be people there that almost seemed, you know, they could walk on sticks, they could, my mum couldn’t. My mum couldn’t feed herself, my mum really couldn’t hold a conversation. She would look to me, if someone asked her a question, to sort of almost speak on her behalf, not because I didn’t, I wanted to take over from what she was saying but just because she was quite confused and she knew that I would speak, you know, truly on her behalf.

So I always felt like she was a lot more ill and we needed more support than, that, you know, to me I was the one that took my mum to the Friday night fish and chips night with the MS society. Everybody else there was with their husband. There wasn’t daughters there, but I was the daughter that had to take my mum because if I didn’t she wouldn’t go out. But when I was there it was apparent to me that people had their husbands and their children didn’t have to do what I had to do. And, you know, that does make you feel sort of really angry.

I think what happened was there was just a point where I was working full-time, I was working in London, my mum was needing more and more care. I don’t remember the process we went through to get that. I remember it being there. And I remember it progressing. Then I remember it being appalling I can remember things like people were supposed to come in and cook my mum’s sort of dinner and they had to sort of sign a book to say when they had been and I would get there and it would be five o’clock and they’d say that that they’d stayed till six o’clock and they weren’t, they weren’t there. And that happened a lot.

We had people that abused the use of the phone. There was a time when my mum had a smack print on her backside and, there were times when actually she was left up all night because the care didn’t sort of arrive, so this was later on when as I say, that they started picking up more of the role. So you never feel completely relaxed. You never feel completely that it’s all going to work. You feel incredibly guilty, so you might as, you’re sitting there wondering if shes been put to bed so you may as well just drive round and put her to bed.

So I think the care was totally unreliable Upsetting actually. I think what was upsetting about it was that you do it for somebody because you really want them to get the best care and you love them and at times that meant walking away when you felt so, you know, you’re about to pick somebody off the floor who’s sobbing, who’s soiled themselves and you’re trying to sort of sort all of that out. And you have to walk away because, you know, you don’t ever want to show that frustration to them. But you have to, you walk away and you might sort of slap a wall or just cry or go out in the garden and shout and then you come back in and you do it. But you do it and you do it because you want to give the best care and that’s what they deserve and it’s your mum and, you know, that’s what you want to, that what she deserves. You know, she brought you into this world and, you know, you, you should be looking after her. And there she was as a result of me really not, not being around as much as I needed to be. She was basically with people that didn’t really want to be doing it, hadn’t really been trained were lying, were not looking out for her best care, were you know, I couldn’t trust. And you’re trusting somebody so vulnerable and so precious to a complete stranger, of, many different strangers coming in all of the time. And that’s, yeah, that’s really, really, really upsetting.

But, yeah, I felt very alone because you norm, you expect you expect your parents there to sort of be guiding you. And I can remember another memory that really sticks in mind was when I got my GCSE results I went with my friends to the school and everyone was all excited and those who failed were sort of saying, Oh you know, my parents are going to kill me, kind of thing. And I went home and put mine in a drawer and nobody even knew that I’d got my results and no-one ever asked what my results were.

So theres quite prominent sort of memories like that where I think, you know, your family should be supporting you and nurturing you and that support wasn’t there. And there was no support from anybody sort of saying, you know, no, even within the school itself, within even my friends, you know, there was no, nowhere, no network that would pick up what was sort of happening. And I don’t think I could have even articulated what, it was my experience from quite a young age that it had almost become the norm. So although I would get really upset and I would and I knew it was an unhappy experience I’m not sure that I would have known to, you know, it was kind of almost what I knew.

So I guess I always felt that I had to, and this is, you know, something that I still do now, is I guess I always felt that I had to put a brave face on and be strong and that was my, that’s what I learnt was I had to be strong. I was the strong one. You know, I kept the family together and it, albeit that my father and my sister were almost dropping in and dropping out because my father didn’t, my step-dad, didn’t spend a lot of time at home, Even at the weekends he would go off and, you know, sometimes just not be there. And it got to the point where he was staying out overnight and clearly he had found someone else. So again I had that to sort of deal with. And, to try and act as a buffer for my mum that, you know, to try and protect her from some of that, that sort of thing.

So I felt an incredible you know I was just completely relied on, I was completely the one that sort of kept everything together and I kept mum going. And sometimes I think that was manipulated and abused a little bit. And I think my sister just assumed you’ll get on and do it and had no concept of just what I was going through really. And we talk about that now. And my step-dad I think he used it as a, to manipulate kind of, you know, I can remember things like yeah, I must have been a bit older, I’d got my first boyfriend, so probably about 18, 19, my first sort of really serious boyfriend. And I can remember you know, him having a conversation with my mum saying, Shes going out, shes leaving you again, she doesn’t love you, what sort of daughter is she? And there was quite a lot of that sort of went on because I think he wanted me to be around, he wanted me to be there because it stopped him from sort of picking up on some of that.

My sister realises now that I did so much more than actually perhaps she realised at the time. It wasn’t very straight forward because my sister, at the age of 21, had a baby with hydrocephalus and he was very ill so she was somebody without a mother really who didn’t have a very close relationship with her father. She was young and with a very severely handicapped child who actually died last April so she had her own things that she was worrying about. And she, she suffered you know, a lot of, of illness as a result of that really. So the conversations that weve had are, she felt that she had just nobody as well so she felt isolation. I felt that I was the only person sort of managing all of this. But I guess the common ground is the isolation really, is that we both knew what it, what it was. I mean, it would destroy some families actually And there were periods of time where my sister wouldn’t see my mum for sort of six, seven weeks at a time.

Now that, that was a lot because what that meant to me was mum’s seeing someone today that means I can do X or, or Y. And but we have talked about it and we, you know, weve worked through that but I would say that, you know, that was another thing that I felt resentful to initially.

Well, I was probably about eleven years old when my mum got diagnosed with MS. And I don’t actually remember much around that time other than her going to the hospital I remember that on holidays she had [background noise] problems with her vision and shed also had problems walking. But nobody had actually explained to me that, you know, what that really meant and what, what the concern was. And I don’t really remember her going to the hospital and knowing about that or anyone really having any conversation with me about what it meant. She obviously then got the diagnosis and I don’t specifically remember being told about the diagnosis. But I remember the, the time and I remember the impact that it had on both my mum and my dad and you know the tension actually there was in the family sort of at the time. And I guess that, for a kid at that age, nobody had actually said this is what it is and this, this is what it means.

So other things I think that were, were difficult for me were, you know, at school I had no-one. So I had nobody taking an interest in, you should do this homework, you should do, how are you getting on at school? There, there was none of that. And I, I really didn’t do very well at school and I think a lot of that was because I focused on yeah, caring for my mum. I had a whole load of issues that were, were around sort of caring for her. And nobody at school, no teachers, nobody knew what I was going through. It was never picked up, it was never discussed and I would never certainly sort of tell anybody.

I didn’t have a very good relationship at school. I wasn’t doing particularly well, didn’t really like it, so the last thing I would do would be to talk to any teachers. I was embarrassed to talk to it, to, to talk to my friends about it because, you know, that, that’s just not what, what, you know, were teenagers and everybody’s sort of doing their own thing, So, if anything, I think I’ve just tried to hide it from people and probably just do, do the best I could, sort of, even so I’d without you know, behind closed doors really.

There was no Internet really in those sort of when, when my mum sort of got it. I suppose you look to your parents when you’re that young to sort of get explanations and a lot of information. I don’t think I would have known where to go to. I mean, I guess looking back now perhaps the doctor’s or something like that but, I, it never occurred to me. It, so I think it never occurred to me because I don’t think that support was offered to us as a family. I don’t remember there being any conversation about this is it and weve got this person coming to talk to us or anything like that. And I think it would be totally different now because I think I would just Google MS and then I would, I would have that. So hopefully for people and hopefully it’s not like that now. Hopefully people, you know, if, because, because what worries me is that there are, there will be kids like me that will just have had, don’t have a conversation in their family about what does it mean and get misinformed because things like my dad saying, You’re going to kill you mum, because were having an argument. Actually I’m old enough now to know that that’s not right. But you know, you, there was nowhere that I could go and ask those questions and test that sort of thing with.