Contradictory information I’d say more than anything. The contradictory information from different GP’s and the rheumatologist about what pain killers are safe to take throughout pregnancy. One said you could can take Ibuprofen, one of them said you can’t and it’s just, you’re like asking them for advice because they’re supposed to be the ones with the information and you’re getting information which is contradictory so that’s been quite difficult and obviously the whole issue over leflunomide having to actually be off it two years rather than one year, that was obviously quite annoying. I appreciate the fact that it might have been new developments within that year that but made them suddenly change their mind but then I had to have like two blood tests fourteen days apart after the wash-out treatment to find out what levels were in my bloodstream and no-one knew where this test could be done or how it had to be done which was quite scary thinking, ‘Well there must be lots of people which have been on this medication which then want to have a baby.

You must have had to do this before?’ And I think it took about a week for my rheumatologist to find out how the bloods had to be done and then it had to be ordered in and we ended up waiting so much longer than what we’d planned before we could start trying because of these blood tests which had to suddenly had to happen and they took longer than we were expecting so that was quite frustrating. It was quite nice because my GP surgery gave me the telephone number for our midwife so I phoned and spoke to her about my other medications and things she was, I was on and she said really I need to just speak to my GP but make sure to start taking folic acid every day. So I went to the GP and talked about all my other medications. I actually ended up having two appointments with different GP’s. The first one kind of like said, "Oh you’re alright on everything," and the other one said, "Well really you want to be off as much as you can," and he’s the one I see more often so I went with him. But he’s been really supportive, like I’ve been quite poorly since I had my flare up in September because I’ve had a cold and chest pain and stuff as well and every time I’ve been to him he’s been like, "Well we’ve got to be careful because obviously you’re trying to have a baby," so he’s took that into consideration when like he’s given me antibiotics and things like that.

So yeah the support from my GP’s been fabulous. The contradictory information which you get from different services is a bit dodgy. I find it quite strange that knowing that I want to have a baby that the rheumatologist or the GP hasn’t said about speaking to like an occupational therapist to speak about things like that. And also I don’t know to speak someone about like the whole pregnancy and birth and things like that because surely that’s something I’ve got to consider. I get pain like in my hips and stuff so giving birth might be an issue but haven’t really gone down that road yet and I know at one point someone said I’d have to have a consultant led pregnancy and then at my last appointment she said, "Oh I’ll see you in six months-time." I go, "Would you need to know if I’m pregnant before then because does it not need to be consultant led?" and she’s like, "No I don’t think so." So yeah the contradictory information is the worst part of it but yeah.

My GP was fantastic. I went to see him quite regularly. Depression does run in my family as well so I got the aspect of probably I’m more likely to have it than other people but the arthritis is probably what causes it because it’s quite a stressful thing to deal with. No the GP was very good, he listened, didn’t make me feel like I was in the wrong or anything, quite supportive, talked me through options of going on tablets or counselling, things like that. Due to the nature of the counselling we kind of like discussed at the time probably wouldn’t be a benefit.

Probably now it would be better than the tablets but I suppose it’s up to me to go back to the GP rather than the GP to call me in. But no he’s been really good. I know that when I’ve tried to come off the medication in the past he’s been there to talk me through it and I did come off it at one point. I went downhill, wanted to walk out in front of a car, wanted to drown myself in the bath, things like that. I’ve had quite major effects of trying to come off it so he was quite easy to talk to about things like that as well which helped. So no I can’t really fault how they dealt with that side of things. I’d say possibly the rheumatologistnecessarily the fact that the arthritis can lead on to cause things like that but from the aspect of the GP which has dealt with it is good. But I think possibly the problem there is the fact that they don’t communicate to one another so the rheumatologist doesn’t necessarily know the things you discuss with your GP and whilst I might mention it to the rheumatologist I won’t necessarily say everything I’ve said to the doctor. And whilst there’s a confidentiality thing I think that departments and things need to communicate a bit more.

You don’t drink?

No not really. I used to but obviously then when I started all the medications; luckily I got lots of my drinking out the way when I was about thirteen, I used to drink loads but no since I’ve been on the medications I just; I obviously don’t go out much because of how I feel and when I do I like to kind of like know what’s going on around me and I like to be able to have a bit of control over myself because when it mixes with the drugs I just don’t feel safe and if I collapse or something where I’ve been out with people I don’t necessarily know that they’ll be there to take me home and stuff whereas now obviously if I did I know hubby would get me home. But no I don’t particularly drink. I’m too scared of how it reacts with the tablets and now I’m not drinking because I want to have a baby but no drink doesn’t bother me, don’t really touch the stuff.

Scary. I can remember wanting my Mum with me but because lots of things were radioactive stuff, she had to wait outside. I suppose it’s scary for anyone but up until the time I started having my fits I’d been really well. The only thing I’d ever had wrong with me was asthma and like I’d never had blood tests or anything before, so just suddenly having that and my experience of blood tests at the hospital when I first had them were atrocious. They got blood on the floor and they bruised me oh, it was horrible and I think just my first experiences made everything else so much scarier. So lots of the other departments where I had all these tests like the MRI scans and they like sat down and they explained to me what was going on and I can remember like having like a buzzer to press when I was in the MRI if I got scared and they were really nice. But still scary when you’re young and you’ve never had to have anything like that before and when you don’t know what’s wrong with you I think it’s the not knowing part which is the most scary.

Did anybody tell you what the tests were for or what was going to happen before the tests were conducted?

Didn’t tell me what they were for as far as I can remember. They might have told my Mum especially obviously when I was in the children’s wards before that they probably did tell her. But no I can remember like getting to like something like the MRI scan and them saying, "We’re just going to put you through this tunnel, if you need us press a button." They were kind but they didn’t really go into too much detail on what was happening and why they doing it.

I mean I don’t want to put words in your mouth but would it have helped if they did explain more?

Oh yeah definitely. I think just maybe, the doctors and things saying, "Well we’re not really sure what’s wrong with you, we’re going to do this test because it might be this, it might be this. When you go to the test I’ll explain to you what’s going to happen but it’s not going to hurt or you might feel a sharp prick or something like that." Just give me an indication of what to expect of it would have helped.

Oh tramadol’s a scary drug. I go a bit weird on tramadol, I hallucinate, I have really weird dreams which feel really real. Get really sick on it, it’s just not a nice drug but when you’re in as much pain as you can get sometimes and that makes you sleep or it take, just take the pain away for a few minutes, you’d do anything. I was in so much pain the other day I said that if it weren’t for the fact that we were trying to have a baby I’d have been taking tramadol that day because that’s how much pain I was in. That’s kind of like my scale of how much pain I’m in.

So what, what do you hallucinate with, with tramadol?

I see lots of things , my husband’s had ten eyes and three noses before.

OK

And I thought all my teeth had fallen out at one time and was crying and hysterical, yeah it’s quite a horrible drug.

It sounds horrendous.

Yeah

Absolutely terrifying. Gosh OK.

I think the dreams you get with it, I still get dreams now which I’ve figured out is actually the pain so they’re kind of like the pain dreams with the hallucinations of the tramadol, so yeah they’re quite scary and weird.

You’re the first person to say pain dreams, what are pain dreams?

Really?

Yeah really.

Well to be honest until I came off all my tablets I thought it was the tablets making me dream but no it’s the pain. Just really real dreams, you have dreams and you wake up and you, I couldn’t tell you whether or not they were real or not because they feel so real and, and horrible dreams where you wake up sweating and crying.

So are they predominantly nightmares or is sometimes they are at times?

Sometimes they can just be really vivid dreams not, not necessarily like your nightmares of monsters and things like that. Quite often have dreams that people who I know die and or like I’m stuck in a fire, they’re just real vivid, yeah strange.

OK and they’re quite regular with the tramadol?

Yeah I think the tramadol makes them so much bigger because the pain in itself makes the dreams there and I still get them now that I’m off all my medication but when I was taking the tramadol they were just so much more and strange as well really like bizarre things coming in but what you’d still think were real, yeah.

But along with that I’d also been on leflunomide which when I went on it there was, it was told there wasn’t any like particular long term risk of it or anything but when it came to saying that we’re thinking about having a family in November 2010, they go, "Oh this drug you’ve got to be off for a whole year before you can even start trying, it could be really dangerous." So then last November 2011 once I’d been off it a year went for my routine appointment and they told me that you actually have to be off it for two years, is the advice now so that, that was quite frustrating in itself so I had to have like a wash out procedure which was horrible, it’s a horrible drink, gritty drink, it’s bit like drinking sand I suppose which had to have in it , I had to have like specialised blood tests which had to be ordered from like The Netherlands or something and it was a lot of hassle and it was a bit frustrating because if I’d been told things like that before I wouldn’t have ever gone on the drug because I’m obviously at, at an age where having a family is something which is quite likely. Lots of young people are likely to have a family at some point so I think that’s definitely a drug which I think now they don’t give to women of child bearing age which is a good thing. Eventually all the blood tests came back fine so they said we could go ahead and start trying so it’s another drug I was on.

I’m always very tired, got lots of weakness in my arms so I struggle to hold a saucepan, open a tin, things like that, simple things which people don’t think any different of. And struggle to get out of bed sometimes in the mornings, it’s quite a challenge just to get out of bed. Getting dressed, showering, need help a lot of the time with that. Luckily I’ve got a nice devoted husband who does it for me now [laughs]. My joints get very stiff, they flare up, often have to take off my wedding ring because it just blows up and it just hurts. Yeah just general pain.