Charlotte Z

Age at interview: 17

Age at diagnosis: 16

Brief Outline:

Charlotte has juvenile idiopathic arthritis polyarticular with a rheumatoid factor positive. When she was at her worse she was in lots of pain and struggled with depression. Her medication helps take the edge off the pain and she finds happiness in helping others with the condition.

Background:

Charlotte is a student at college studying a BTEC in Forensic Sciences. She is white British.

More about me...

Charlotte has juvenile idiopathic arthritis polyarticular with a rheumatoid factor positive. She is on methotrexate and Enbrel (etanercept) injections and has three injections a week to control her arthritis. She is also on prednisolone steroids. She takes paracetamol, naproxen and tramadol for the pain and inflammation. To protect her stomach from the side effects of the medication she takes folic acid and omeprazole.

 

Charlotte first started experiencing symptoms in the morning. She struggled to perform basic tasks such as walking and opening milk bottles. Charlotte was learning to box at the time and kept the pain a secret because she was worried that her house mistress at boarding school would not allow her continue training. Within a short space of time the arthritis progressed and Charlotte began to experience pain and swelling in all of her joints. For example, her feet would not fit in her shoes, her knees were larger than normal and she had “sausage fingers”. She struggled to yawn and eat because her jaw was swollen. Charlotte was forced to stop boxing because she was in pain all day and not just in the morning.

 

Charlotte went to see the GP with her mum. The GP suspected that Charlotte had loose ligaments and growing pains and prescribed painkillers. The painkillers did not work and Charlotte had strong suspicions that there was a more serious problem. Charlotte and her mum made an appointment to see a different GP who referred her to the rheumatologist. Charlotte’s condition got worse before she saw the rheumatologist and she went to the hospital’s accident and emergency department several times with the pain.  Each time she was prescribed different painkillers which did not work. Eventually Charlotte was seen by a rheumatologist who was quick to offer a diagnosis and admit her to hospital for steroid infusion and further tests.

 

Charlotte’s current medication has helped with the pain and reduced swelling. Before being on the medication the pain made Charlotte feel sick and she had restricted mobility. Now she is in constant pain but it is not so severe unless she has a flare up. Charlotte is very happy with the treatment she is receiving at the specialist arthritis clinic and has access to a range of specialists including a psychologist, physiotherapist, occupational therapist and clinical staff.

 

Charlotte has battled with depression since being diagnosed. She describes herself as “reaching rock bottom” and wanted to die than live in pain. Her occupational therapist and psychologist have helped her feel better about herself by listening to her and suggesting coping strategies. For example, Charlotte was told that it was okay to tell others how she felt, and that she may feel better if she could help others in the same situation as her. Charlotte now tweets and blogs and provides emotional support and information to others. Charlotte also reflects about that those who are in a worse position than she is. 

Charlotte Z's occupational therapist explained what the grief cycle was and said that feeling sad did not mean somebody was 'weak'. This helped Charlotte accept her condition.

I’d been to the Occupational Therapist who explained the whole grief cycle. And she, in, within that she said, “You’re not weak if you feel that way.” And that’s how I felt, I felt weak if I told people. And then just by her I realised she was right. So I was able to like to say, “Okay I need help.” I don’t want to feel like, I didn’t want to feel like this anymore but I didn’t know how to not feel like it. So then by accepting that, reaching the bottom I was able to then come back up again. And then I started I just wanted to help, I didn’t want other people to feel like that so I found ways in helping other people, and then that’s, that’s just bought a lot of positivity as well.

 

And so it helps you feel good about yourself if you can help others?

 

Yeah.

 

I didn’t think that I had the right to feel sad and upset when there was other people going, like other people in the world that were dying and ill, and I felt guilty that I felt like sad that I had this illness, but then I realised well, its, I’ve never had any problems in my life so this to me is quite, is a problem. So I was able to accept that everything and then through that I was able to accept that I actually had the disease and to live with it, move on because you have no control over the disease, but you have control over whether you learn to deal with it and move on and have, you can, you can, it’s your control whether it’s a good outcome or a bad outcome. So I wanted a good outcome from it so that’s where I’m heading.

 

Charlotte Z went to A&E because she was in so much pain and her painkillers weren't helping. The...

I saw the GP, had the blood tests, got the results, had the x-rays. The x-rays came back fine I think though.

Okay.

Did they? Yeah the x-rays came back fine. Which was why it was all really bizarre. But the pain relief that the GP, the female GP had prescribed me just wasn’t doing anything, and that’s why I ended up down at A&E ‘cos I just, it was just kind of like a last resort, and we just didn’t, I didn’t know what to do anymore. We didn’t know what was wrong with me and it was just, you expect to go to the hospital and they help you. That’s where you go when you’re not feeling right so that’s what we did but they’d, they gave me some more pain relief, but it just basically knocked me out. So at least I got some sleep, but yeah.

Okay so at what point where you referred to the rheumatologist? How did that happen?

The same GP who ordered the blood tests and the x-rays at the same time she referred me to the rheumatologist. But I had to wait quite a while for the appointment to come through.

Oh I see. I see. So between seeing the rheumatologist and seeing the female GP there was a space of time that you went to A&E?

Mm.

What was it like being in A&E?

Not very helpful. I mean they, well they asked us what was wrong, well what, “I’m in pain,” that’s like all I could say. “I’m achy” I kept saying. And then I couldn’t even like walk properly towards the room or anything. And then they , they put us through to like this duty doctor or something, and she just, she examined me and she, she agreed with the GP that there was something like weird going on, but they couldn’t do anything and they knew that ‘cos they knew I had this referral to the rheumatologist. They just kept saying, “You’re gonna have to wait for the referral. Until then we can just give you pain relief.” The pain relief medicine wasn’t doing anything for me.

Did they change the medication? Because you went several times didn’t you?

Yeah I think I started on naproxen, went to co-codamol, diclofenac, ibuprofen, dihydrocodeine, yeah everything.

And none of them worked?

None of them worked.

 

When Charlotte Z was given steroids through a drip she had a horrible taste in her mouth which chocolate would not remove. She also developed rosy cheeks.

They had pull down beds. It was very cool, yeah. The steroid infusion wasn’t very nice though. It was like, they told, they said about the effects that when it was going to happen they leave this, a really horrible taste in your mouth, and I was like sat there eating chocolate trying to get rid of it, and nothing was getting rid of it. So I just had to sit there whilst I was having this thing, with this bad taste in my mouth. And then afterwards as well another effect is really rosy cheeks, which I get, from, even with the oral ones, so I was just like really really rosy and flushed in the hospital. And because of the medication that I was on, it was like the co-codamol which obviously makes you constipated and so they were giving me really disgusting laxatives that I had to drink. And because I was in hospital I had to do, drink it there and then. So that was really horrible. There was no escaping.

Charlotte Z can stretch and move her joints more easily when she is in the hydropool. During a flare up she finds the pool relaxing.

In the hydropool it’s basically a huge pool that’s heated. So it’s like a massive bath really, a warm bath. So ‘cos it’s warm it’s nice on our joints. And because it’s in the water it takes the impact off and it’s easier to move our joints there. So we just do stretches, or like if I’m having a bad day, like I had a flare up and it was my neck and back were really painful. So she just like she let me in the hydro pool, I just relaxed and then I stretched them out gently and then, then I had a knot in my back which was really painful, she massaged it out for me. And then, yeah we do stretches and just walks and runs and, just to get your like, just to exercise your muscles and stretch them out without it being too much of an impact and hurting too much.

 

Where do the exercises come from?

 

Yeah the physio, your physiotherapist is in the pool with you. And she does them with you.

 

And do you have different people in the pool at the same time doing the same thing?

 

Sometimes. Not all the time, sometimes.

 

They do their own thing do they?

 

Oh they’re doing their own thing with their own physio. It’s just one on one.

 

Charlotte Z's brother kept her company when she was stuck in bed or at the hospital. He's a 'protective' brother who struggles to accept Charlotte's arthritis.

He doesn’t like it. He doesn’t want me to be ill. I don’t think he’s accepted it. I think he’s in, I think he’s the one who’s found it hardest, like I was on, I think he’s, ‘cos obviously he’s in the Army and away, when I’m really ill he comes home and he came home and he, obviously I’m stuck in bed so he comes and sits with me and puts on a film. 

 

When I was in hospital he came back from where he’s based and came to the hospital and brought me DVDs and food, and yeah. And I was on crutches at one point and he rang, he kept ringing me to find out if I was off them yet. And yeah, he’s quite, we’re quite close so, and he can be quite protective as well, so I think he finds it quite hard ‘cos I’m in pain and he can’t stop it. So I think he probably finds it the hardest out of the whole family. Like we were walking along and he was like, “Walk normally.” And, but yeah I think he just wants me to be normal. I don’t think he wants me to be ill, but yeah. Only one sibling can get the illness, so I took it for him so he should be thankful.

 

And you mentioned about the injections didn’t you, he didn’t want you to be on those?

 

Oh yeah I did an injection in front of him and he was like “Oh don’t do that.”

 

Charlotte Z was determined not to miss out on social activities like going to the school prom. Eventually her arthritis got so bad she spent a lot of time in bed. Her best friend used to visit her.

Okay then so can you explain how arthritis has affected your social life?

 

Well before treatment well it didn’t really affect it as much as it probably could have because I didn’t let it, like I still went even though I was advised not to, like my parents didn’t want me to and I probably shouldn’t have, I still went on holiday with my friends and when I was really bad and I still went to Prom, I still went to the summer parties, the end of GCSE things. I still joined in. Although I couldn’t, although I had to sit down and probably didn’t do half as much as what I used to and was asleep most of it, I was still there so I wasn’t missing out. But then towards the few weeks before diagnosis I was basically in bed but my I’m fortunate enough to have a best friend that would come down and spend, even though we weren’t doing anything she didn’t mind that as long as she was like with me. So I was fortunate enough to have friends so I still had a social life even though I was in bed. So yeah it has, it didn’t really affect it too much. 

 

Charlotte Z's symptoms began in her thumbs but spread to different parts of her body. She initially put her pain down to other things like writing too much and boxing.

I started, it was my thumbs and I just, I thought oh maybe I’ve been sleeping with like my thumbs like that, and thought oh okay right I’ll just, it’s probably just something like that or I was doing my GCSE’s, it’s probably just where I’ve been writing so much. And just passed it off as one of those things, and then it was always in the morning, and then it would kind of ease off throughout the, as like the day went on. And then it started it spread to like the rest of my hands and my wrists and my feet and then again I just put it down to other things.

 

I was boxing at the time so I just put it down to that. And then I was doing trampolining in PE and I hurt, I thought I’d hurt it doing that like when I had landed, so I just passed it off as other things. And then when my feet started hurting I thought it was my school shoes. So I went and got insoles and things and then when it started in my neck and back I passed it off as the bed or it was just the pillow or the way I was sleeping funny. 

 

But yeah and then but I never told anyone. In the mornings I couldn’t walk down the stairs, I couldn’t open the milk on the cereal.

 

Charlotte Z's old school friends still want the 'active', 'bubbly' and 'happier' Charlotte back. Her new friends at college didn't know her before diagnosis and don't get upset that she has arthritis.

Oh I think my old friends find it harder to accept that I was now different, and because I would, I was always the one that organised things, the one that was like really active. Did all the sport, I was the active one, the bubbly one and then all of a sudden I couldn’t do anything. I couldn’t move. My best friend had to dress me, I mean on holiday she had to dress me, she had to help wash me and on the loo and stuff and that’s not something you expect at 16 to be doing. And it’s not, you don’t, it’s kind of, I think I was lucky, I’m lucky to have her because not many friends would do that so that was okay.

 

But I think they’ve found it harder to cope with like they treat me differently compared to my new friends who can, when I’m at college with them they can see if something’s wrong, I’ll go quiet and they can see that something’s wrong, and they’ll offer to carry my bags and get me a chair and stuff and then they don’t have to ask to go down the stairs, they’ll just take the lift with me. And they won’t leave me on my own or anything like that. And because they haven’t known me any other way they, they’re kind of just like, “Ah that’s how Charlotte is,” whereas my other friends have known me this other way, and when I was obviously quite upset and sad they, they are obviously gonna prefer the happier, they wanted me just to be happy again so I think they found it hard to accept and which is fair enough and I can understand that. But yeah, they’ve all been really good about it and they’ve all been really supportive. And the fact, because they live so far away because obviously it was boarding school, I used to go up there quite a lot but now they come down to me a lot which is nice of them.

 

Charlotte Z didn't want to die but she didn't want to live with the pain either. She felt 'miserable and sad all the time' until she found help.

I wanted to kill myself, I didn’t want to be dead but I didn’t want to be here in pain, so yeah. And I was just, this is going to sound really horrible but I like, I, at times and I know other people with Arthritis have said this but at times we wish we had a different illness that can either be cured or kills you, because you’re living in pain your whole life and yeah, that just seems, I was just like “Why?” “Why me?” But now I look back and think like I don’t think in that way at all anymore. And yeah it was quite as; I was probably quite horrible to live with because I was just so miserable and sad all the time. And I just, I’d got to the point where I didn’t know what it felt like to be happy. I forgot, I was starting to forget what it felt like to be happy and was starting to, but I didn’t know what it was like not to be in pain anymore. And then I was losing my like happiness as well. So yeah. But and the psychologist helped with that and then it was my Occupational Therapist who actually explained like the whole grief cycle, and then I’ve kind of just started to get to the point like this isn’t you, you’ve got to do something about it. You’ve got the diagnosis now, which is the hardest part you’ve got an illness, you’ve got to live with it. Yeah. So make the best out of the bad situation.

Charlotte's video diary.

Charlotte has juvenile idiopathic arthritis polyarticular with a rheumatoid factor positive. When she was at her worse she was in lots of pain and struggled with depression. Her medication helps take the edge off the pain and she finds happiness in helping others with the condition.