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Mary

Age at interview: 47
Brief Outline: Mary is Jessica's mum. At the time of the interview Jessica was 20 years old. Jessica has systemic juvenile chronic arthritis and was diagnosed when she was 22 months old. Mary talked about the physical and emotional challenges she and Jessica faced when Jessica's arthritis was not under control.
Background: Mary is a logistics supervisor. She is married and has 1 child. She is white British.

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Mary is Jessica’s mum. At the time of the interview Jessica was 20 years old. Jessica has systemic juvenile chronic arthritis and was diagnosed when she was 22 months old. During the interview Mary talked openly about her physical and emotional struggles and described how she feared for her daughter’s life on several occasions. She discussed problems with health care provision; a lack of emotional support for parents; and worry for Jessica’s future. Mary also discussed how she was proud of Jessica’s accomplishments in life, such as her GCSE grades, and how Jessica’s latest treatments have allowed Jessica to live more independently and pursue college courses. Mary used to think that she was a strong character but she admits that she has become “tougher” in the face of adversity.

 

Mary talks about her daughter, Jessica, who has arthritis and Crohn’s disease. She describes what...

Mary talks about her daughter, Jessica, who has arthritis and Crohn’s disease. She describes what...

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Yeah just get on with it. You learn how to, as I say nobody knows your child better than you do so you know what areas are sensitive and where you can, which angles you can go in to lift her up at and move her around and get her in the bath or get her in the shower or; it's a thing, it's like toilet needs and whatnot. I think Jessica gets more embarrassed than we did. For me, as a mother, it's just the thing that, you know, you did it as a, when they were babies and whatnot, you just carried on. She would be more embarrassed about it than we were.
 
Was it more of an issue when the Crohn's kicked in?
 
Yes, that was total, sort of like, that was twenty four hour a day care because she literally, she couldn't move, she couldn't do anything for herself and it was a case of if she ate anything, she was; in the beginning you weren't, she wasn't sick, it was all coming out the other end, it was just constantly and then it just became, it was all water and it was, in the end it was just; you were scared, you were thinking, 'What the hell, there's hardly anything going in but there's so much stuff coming out. Where's it all coming from?' On many a night even in the past we've had where we've had to change the bed three or four times and have a bath full of sheets that you've had to clean up and whatnot and…it doesn't bother me that kind of thing though. I'm sort of like; many times people have said to me, "You're in the wrong profession, you should have been a nurse," but it's totally different when you're doing it for your own child rather than, you know, to do it for a total stranger. I don't think I could do that. But she's my baby].
 
 

Whilst waiting for a diagnosis, Mary was very afraid for her daughter and frustrated because she...

Whilst waiting for a diagnosis, Mary was very afraid for her daughter and frustrated because she...

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And I thought it was a virus. So then from the October to the following April she was a bit off all the time, she wasn't quite herself and then one particular night in April we heard her screaming from the bedroom next door. Raring temperature, couldn't go near her, couldn't touch her, wondering what the hell was wrong. Got her into hospital, we were in the hospital five weeks before they actually diagnosed her. Luckily the doctor at the time he'd had it as a child and recognised the symptoms and we went over to the rheumatology hospital and gave her 40mg of steroids, a blood transfusion and the day after, she got up and started moving around. But five weeks previous to that nothing, couldn't move, couldn't do anything. It's quite scary in the beginning because at one point she actually went so limp in my arms I thought she was going to die; it was horrible. And I think it's the unknown so for me if they could come up with something that, you know, the diagnosis that's earlier rather than; we were told it's normally twelve to thirteen weeks so we were lucky and the fact that, but still that, that five to six weeks of, of nothingness, of not knowing, people coming at you saying, "We think it's Kawasaki syndrome, we think it's this, we think it's that." It's not what we think it's what, right we need an answer. Please somebody tell me why the hell is my child in so much pain and you can't do anything. You're not doing anything to make her better. So for me that, that was the hardest part, the very beginning whereas the sort of like, it takes so long to diagnose.

 

Mary is proud of her daughter’s GCSE and A-Level grades, especially since Jessica missed about 70...

Mary is proud of her daughter’s GCSE and A-Level grades, especially since Jessica missed about 70...

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All of it. They've, even at primary school when she was bringing stuff on the, they'd changed the way they'd done English and Maths and it was like, "You don't do it that way," "Yes you do Mum this is the way they do it now." And I must admit, so one thing I'm really, really proud of Jess for because she missed so much school and I mean the majority of it that the fact that when she did actually settle down into her final high school she actually got GCSE's and got C grades. To us that was like getting A stars because she'd not been in there to actually do the work and then to go to, she missed it again, she probably did half the time at college that she was supposed to but she still got her your Business, she got her Business Studies A level. So you know, it's a massive, massive achievement and we always say to her all the time, that you know that we're really proud of her for it because, you know, most of her friends that she went to school with, they were getting C grades and they'd been in school all the time. She literally missed like I would say; I would say seventy percent of her schooling was missed.

 

Mary’s local authorities paid for a wheelchair ramp so her daughter, Jessica, could get in and...

Mary’s local authorities paid for a wheelchair ramp so her daughter, Jessica, could get in and...

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No same. We'd had the same. They said that we could have a ramp for the front door but that's about it. All the rest because I worked, my husband worked, all the rest was up to us. So we had to, the first chairlift cost us two and a half thousand pounds which we didn't have, we had to get a credit card and then buy that on a credit card because she needed it. And then the second stair lift because the first one broke , I got a good deal on that one, because I thought I'd been ripped off the first time, we got the second one for about nine hundred pounds. It was still a new one but that was when the hips started again because we hadn't used the other one it sort of died a death didn't it? So we had two, so we paid for them ourselves and everything else apart from the, you know, the fact that Jessica gets disability and stuff like that. All the rest we've always paid for and we didn't even know about DLA and stuff like that when; it was only the nurses again, the homecare team that said, "Do you know you can disability for her?" and stuff like that so we wouldn't have been aware of any of that.

 

Mary was “methodical” when it came to her daughter’s medications. She wrote down when her...

Mary was “methodical” when it came to her daughter’s medications. She wrote down when her...

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I'm quite methodical in stuff like that. I always had, I'd just wrote everything down when it was to be administered, what times it was to be given, the amounts and everything and that was not just for me because it was; we would, Jessica was ten before my husband and I actually went away for a night or away somewhere without; because we always felt like it was, it was hard enough on us with that responsibility to give that responsibility again to somebody else was even harder. So you just get into a routine of making sure you wrote everything down, you knew when it was to be given so again it just, you get into a habit and it just becomes a habit and you, you then learn which; like I learnt the, the bit about paracetamol and Neurofen about you can give it every three hourly's because she was in so much pain all the time that it was a case of, 'What the hell can you give her that's going to take this pain away a bit faster?' and the having talked to the nurses and they said we, "Have you done this bit where you can do it in-between?" So, you know, that you just learned by asking the right questions. It's all by experience but I mean you just write that down. I did it with the when my mum got diagnosed with cancer. We all, my mum was on so much medication we did exactly the same thing – put days, you know, what times of the day and tick them, then add a tick box when it was given and whatnot so you made sure that you weren't either duplicating it or somebody else wasn't coming along behind you and giving her the same medicine. We don't have the same charts and things like they do at the, the hospital.

 

There can be days of great pain but there also are days of great joy. Stay optimistic by thinking...

There can be days of great pain but there also are days of great joy. Stay optimistic by thinking...

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Only that it's a tough road to go down, it's very tough but there can be days of great pain but there can be days of great joy and the joyous ones will always make you forget about the bad days. I tend to, of the horrible things that have happened to me, they're in the back of my memory banks and every now and then and I think about them, I can go into floods of tears so I try and keep them stored back here all the time. Never goes away but it's always there because that's what makes you the person that you are. But always concentrate on the positive and not the negative. You know on the really, really bad days just think about, as Jessica said in hers, it does get better and there are worse people out there than you. Going back one example – Jessica had to spend a night on a cancer ward - treatment that they were giving to her - not that she had cancer but it was part of the cancer treatment and you spend a night on there and that really does open your eyes because I was lucky in the fact that I was taking my child home the following day. There was parents in there that weren't taking their kids home and that's heart-breaking but that then gives you the strength to move onto your next days because you've always got that thought in your head that there's always somebody worse off. You know you think your life is bad but somebody else's life, somebody just round the corner from you or in the next bed to you, theirs is even worse and it's sort of like it makes you feel a bit lighter and makes you, just prepares you then for the days that are coming. So it's a horrible, horrible disease but it does have its, I can't say good things, but there is light at the end of the tunnel. There's a lot of light at the end of tunnel having got to, Jessica now to nearly twenty one, I could picture this many years ago but now to have actually got there and seen the woman that she's turned into now, it's a joy.

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