They put me on methotrexate tablets I think it was for the year after and they told me there’d be no side-effects with them but I got very ill with them, they made me sick and I couldn’t sleep and then I went off them and they said that the injection form of it would be better for me and theno I had to be trained to take that myself because it’s used for cancer patients as well or something and Mammy was pregnant at the time and if it’s spilt it would have been harmful for her like. So I started taking it but then I started taking panic attacks with it so I don’t know if that was the side effects or just me but I was taking them anyway and I couldn’t do it anymore. So then I withdrew from the injections myself and I was just on paracetamol for a while and now I’m on some other drug that I don’t even know the name of.

OK. And tell me about the panic attacks.

I couldn’t, I’d faint and then I’d black out and I wouldn’t know what was going on.

And you suspected that they may have been caused by the injections of the methotrexate?

Mm

And did you discuss that with anybody?

I discussed it with the doctors but they said it was just me, I don’t know. Because I’m used to taking my own injections but not that one and it made me feel sick as well so you know.

You used to taking your own injections?

Insulin

Insulin OK. And so did you have to inject yourself with methotrexate?

Yeah

And so tell me about actually doing that. What did that involve?

Involved, I had to take a lot of safety procedures doing it. I had to be isolated on me own, had, it didn’t matter if I got it on my skin so then I didn’t have to wear gloves but if Mammy or anybody else was around me they’d have to wear them and; so I just was on my own and I took it but then I’d get sick and then I wouldn’t want to take it again if you know what I mean?

Why did you not want to take it again?

Because I didn’t want the panic attacks and everything.

So how many times would you have taken it yourself?

Probably four of it, five months and then I got moved up to [town] to get it for the nurses to give me it instead, said it would be easier on me but then I’d still have panic attacks.

So how many times a day would you have to inject it?

It was only I think it was twice a week.

I used to have it as an injection because I went to a counsellor for quite a while because I had a phobia of needles, which didn’t help when you need to inject yourself. But she taught me if you think there’s something good at the end of it, because I got promised a pair of shoes, so I was like, I’m going to get through this for the shoes That I got my pair of shoes and I thought, Right. I can do this And she printed out a little sticker, which I still have because if you put it up somewhere that you can see you feel proud of yourself that you can accomplish stuff like that. But I used to have it injection and I used to have this hypnotherapy CD every time like every week or something because I got so worked up about it. But I was getting on all right with it injecting it into my stomach. It sort of scared me in a way, because at random points I can feel the needle going into my flesh. Like I know it’s mental, but it feels like it’s just there and I think that that has scarred me. My mum calls me mental for it. I’m like, Cheers, mum
But yeah, I think the thing that put me off it was I was injecting once and I injected too close to the surface and I got a bubble in my skin and I just freaked out, completely freaked out and I was like, I’m not injecting it ever again

Can I ask if your thoughts and feelings about arthritis have changed over time then?

I think because with Brad it’s, people don’t know he’s got it. We think that he’s, he coped really well and thankfully, I touch wood as I say this, he hasn’t had any flare-ups, it doesn’t affect his life. He’s walking, he’s running, he’s playing football twice a week, he’s completely, I mean when we go, when he gets checked out, he’s in remission so we just thank the methotrexate, and we don’t – we did use to talk about it, we did used to say, you know, if he said, "Well I’ve got a slight niggle in my foot, can you have a look," but now it, we don’t even, it’s just the norm, we don’t sit, we don’t really discuss it unless he has a flare-up. I mean he did have one about coming on for a year ago I think, his ankle, it was the knee actually I think and we had to go for a steroid injection. When we got there for the injection it had pretty much gone down. He has been put on prednisolone in the past and that’s obviously worked and he didn’t even need the injection soe just sort of, I think we think we’re quite blessed really that yes he has got JIA (Juvenile Idiopathic Arthritis) but it doesn’t affect his life thankfully.

You’re not on methotrexate now are you?

No.

So who decided you to… to not take methotrexate anymore?

My nurse. She told whenever I used to go to hospital she used to tell me if how I, how is it now? Do you feel any pain?

And when I used to tell her that, I’m okay now but then if she realised that she thought my pain is gone so she took me off the tablets for a while but if I had any pain, then she would put me on it but I haven’t been on it for about a year now, a year and a half.

Okay. Do you still suffer with arthritis?

I actually do and I don’t. It comes, it just comes when it when I do something that I shouldn’t be doing.

And is it in the same place as where it used to be?

No, it’s like spreading somewhere spreading somewhere else.

Where is affected now?

In my wrist and in my jaw because, when I’m eating, I won’t be able to open my jaw that wide and when I’m yawning, I wouldn’t be able to yawn and it’s like when you, when I’m drinking, I actually drink quite slowly and it’s like when I had a sip, I wait for every ten seconds and then drink another one because my jaw can’t open that wide and it’s really annoying me.

Is that always the case whenever you eat now or only sometimes?

It used to be when, before I had my injection, you know, my injections, when I was put to sleep and I had injections inserted me, it used to be then but now it’s okay now.

I’m just wondering whether you struggle to drink now? Do you?

No, but I think say if I like, if I waited for a couple of months to go, it probably comes again because you never know when it can come again. It just comes and goes.

Are you comfortable with going back to hospital for an appointment or going to the GP to get a referral again?

I don’t mind going but it’s like my… I’m sixteen and leaving school and it’s just it’s just my attendance I’m not expecting that amount of uncomfortable with it.

Methotrexate it’s not my fondest memory taking that every week because it makes you puke it back up and I did not enjoy that at all and Mum would always find it hard to like encourage me to take it because I know what was going to happen and so like now because of that one little thing I have a complete phobia of tablets. I do not even think about it. I feel a little bit just apprehensive about it and everything but I was one of the first people to go on the liquid form, the injection form of it and that I felt relieved that I wouldn’t have to take that tablet anymore but then I just like been, I was back, when I was a teenager obviously was like just lazy and couldn’t be bothered to do anything so I tried to avoid it, doing it and taking it but yeah when it came to taking medication and going to hospitals, appointments and like missing school and everything I usually get like a little reward like , I don’t know some chocolate sweets or like take me to the cinema or something, just you know little rewards to you know to encourage me to be ready for the next time when I’d have to go and take medication and everything so and everything.

So you, when you were younger you preferred taking the injections?

Well no, in early teenage years, the injection first came round because up to that point I was on that tablet so I; when my doctor asked me, like told me about this I was like, “Can I try it?” sort of thing because I did not want to be on this tablet, I didn’t want. And yeah my body took it well so that’s always good.

Methotrexate is obviously a very, very common medication and different people react differently to it. Is this the case where you took them, medication and then literally straight afterwards you were sick?

Yeah

And were you kind of properly sick as well?

Properly sick like, bent over the sink sick and then we tried different methods like we tried to crush up yoghurts, that went down a little bit better but usually afterwards I did feel rather sick and everything and actually when I was on injection afterwards I did feel that nausea because obviously it just reminded me of like the tablet form so I actually took milk and that made me feel a little bit better afterwards. Don’t know how but that did and everything. But yeah like every time I took that tablet I would just puke it back up. That was not great and everything, yeah.

Can I ask where there any concerns about the medication not being consumed by the body because you were bringing it back up again straight away?

No. Well there was concerns like they would try different ways to like give it to me and everything but I had like the blood tests because obviously being on methotrexate like it affects your liver and everything so you had to have regular blood tests so they like just, like checked that side of things so if it’s like that but. I don’t know, it like, even though it comes back up somehow they do, it like, the body does retain it somehow and like it did help even though it didn’t help in a way. But yeah there was concern but it sort of like, they didn’t know how to really solve that issue until that injection option came along really and everything so they just, different ways to try and take it really.

And you say, am I right in using the word phobia? Can I use that word?

Yeah. I really, any tablet at all, like, because if I’m in pain they like say take paracetamol like I refuse to take paracetamol and even if it’s like the last resort taking a tablet I have to have it crushed up or something because just, yeah it just makes me feel really weird

What was bad about the injections?

They used to sting and they used to make me throw up and I couldn’t like come to the, I couldn’t, the methotrexate’s colour was yellow and I couldn’t look at the… that injection with the things or the gloves because it used to make me throw up and if I saw the colour yellow, I used to throw up because it used to remind me of that.

You…

It was the smell, I hate, I didn’t like it.

You know, you’re the second person to say that quite recently. I’ve never heard of that before where the colour of the medicine puts them off.

Yeah, it does. I used to stop eating egg. I mean egg, I like the yolk and I used to stop eating that because of the colour yellow.

Do you eat it now?

I do now, yes.

PART TWO
Yeah, I used to have this little icepack but I don’t go near it because it’s, I don’t like, it’s uncomfortable for me. I don’t like it because I only used to use it for when an injection was stinging me and after when my injection had come out, I used it. Now I don’t use it after that because I don’t like it. I don’t like going near it or touching it, even like, if I had, if the injection was in that place and it was like the boxes and the kind of needle and the bin, I didn’t used to go in that place because it used to remind me of the, when I used to have this injection and I couldn’t even touch the gloves.

The gloves, that used to put me off because, even though I’ve been off the methotrexate injections for about two years, I can’t go near the gloves because they make, they put me off, make me throw up. I just don’t like it. I don’t like the smell of it too.