I like my gin OK and I’m not, shouldn’t be so pleased to like gin. No I don’t know, some consultants I’ve spoken to are very stiff and very much, ‘don’t drink, don’t do this, don’t do that, yeah. If you can try and cut out caffeine,’ all this kind of stuff, you know, ‘Try and realise everything,’ and there’s other people who are like, ‘Well actually you be sensible and actually if you just stick to government guide lines,’ and because I’ve never been on the maximum amount of methotrexate anyway, I’ve, you know, I’d have to be drinking an awful lot to cause irrefutable damage. So I try not to drink too much and like to be honest I mean, I say I drink but for me saying I drink, it’s a couple of nights in a pub a week where I’ll have a couple of pints and then I’ll tend to go to the diet coke. OK admittedly, first year I was a Fresher, I got off my face, you know, four times a week you know, but because I was so disinclined to tell people about how much I’ve had, you know, problems with my arthritis and people just stare at you when you tell them and they look at you blankly like, ‘Why would you take these drugs then?’ you know, I just kind of got on with it and maybe I, maybe, you know, did sacrifice my health then but my blood; I always went for my regular blood tests, I was very good, you know, try and have a few nights off a week but as I’ve gotten older and as you become a boring post-graduate student you don’t have much time to be drinking anyway so; my liver should have recovered by now. But yes I had to be a fresher, everyone’s got to be a fresher, you come to university for a reason, don’t you?

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.

Okay then and in terms of drinking alcohol. Is that also moderated?

Yes, very much so. I don’t at all. I try not to not that any of my medications are will counteract with it, I just think that with my fatigue as it is, alcohol tends to have the effect of exacerbating that even more so and when I wake up in the morning, the pain can be quite bad as it is, so if you have a hangover on top of that pain the combined affect is not very good. And it’s not very good for the wellbeing because if you feel even worse you know it’s going to make the pain even worse, so accelerate I think. So I try not to but, you know, I don’t forbid myself. it’s not a strict rule. If there’s somebody’s birthday, I’ll maybe take one drink just to just to be social because I don’t I don’t want to stick out like a sore thumb and people to try and change the way they are about me. But generally, I don’t choose to drink if I don’t have to drink.

Okay then and that’s not something based on doctor’s advice. This is a personal choice?

Yeah, completely person choice because while I’m on sulfasalazine, which is a type of, it’s called a disease-modifying anti-rheumatic drug but there’s another form called methotrexate and that does interact with alcohol quite violently but with the medicine that I’m on, it has no affect with alcohol at all. I just choose not to.

Okay and being a university student, what’s that like?

it’s strange. it’s not as bad as last year because people tend not to go out as much because of the work they have to do and because the increased workload being, if you have a day off because of the recovery of the night before, you know, you start to mount up work on top of what you already have. So it’s not as common but I find it, with my friends that I go out with, we can maybe go to the pub occasionally and I don’t have to drink and that. I just have to, you know, I can take a soft drink or whatever. So it’s not, it doesn’t really cause much of a problem and quite a lot we go out eating. So that doesn’t involve drinking either. So it’s not so much as a problem for me but I can see it being a problem for someone with friends that who enjoy like drinking. That could cause, you know, quite a problem because if they like to go out drinking for a sustained amount of time, you know, you might get left behind. So I can imagine it’s a problem for some people, but for me in my situation it’s not that much of a problem at all.

I’m not the kind of person that’s like go out every weekend and get completely bladdered things like that, but if it’s a night out for a friend’s birthday or something like that I don’t want to be stood there at the bar trying to figure out what’s got what unit’s in it, and because of my medication what, what I can and can’t drink.

it’s just, it’s just tedious especially on a night out where you’re meant to be enjoying yourself and every other part of my life is run by the knee , so I can’t do this, I can’t do that, I have to watch this, have to watch that. So it’s like on the night out I can’t, I just, it’s the one time I reckon I’m actually out to let loose and you know have fun, and I try as best as I can just to pretend that the knee isn’t there, just pretend it’s not there so I don’t want to be stood there trying to count different things and things like that.

And I find it really annoying when everybody is really drunk around you, and you’re sober. And what I can’t, and it’s like normally I’m alright, but if I’m on a night out and I’ve paid to get into the clubs and things like that and then everybody around you is so drunk and just being ridiculous and then you’re sat there and just getting annoyed by all the stupid things that they come out with, and stuff like that. Especially when you’ve paid for the taxi, paid to get into the club and things like that. it’s just, it’s not worth it. it’s, I get the risks and I get why I shouldn’t drink and things like that. And I don’t drink most of the time, but on a night out I’m not, I’d rather not worry about it.

Definitely less than a normal teenager. I don’t mind going out for a night out, if I’m feeling okay, go to a club but I don’t get so drunk that I don’t remember anything or you know I have to be able to go home so I get really, you know I can’t, I can’t be so off my face that I fall in a ditch somewhere, or can’t get back or you know, I’m also a very organised sometimes just like, Okay, how am I gonna get home Am I gonna get a cab home, I’ll get a car home, I’ll text my Dad who will come and pick me up.

But, yeah I don’t go out clubbing that much because it’s energy. You know you don’t get a hangover the next morning you get achy, you get pain, you can’t walk. And if you’ve got, if you’ve got to do something the next day you won’t be able to do it. So you’ve kind of just got to think in advance, well I had a good night out but I’ve really, for the rest of the week I’m just terrible, I just feel terrible.

So I really don’t drink that much don’t really like the taste, but then again if you are a bit tipsy you are a better walker, it’s just a fact you know. I was on crutches, a bit tipsy; I was off my crutches like it’s a miracle Yeah that was one of my party tricks actually, cos I would be with my friends and they’ll just all be like, trying to catch me, Oh my God she’s off her crutches, she’s gonna fall I was just like, No guys, I can walk, I’m Jesus Cos, cos you don’t feel the pain, cos I don’t, the first thing to go is like I can’t feel my legs and I’m just like, I’m floating I don’t know it’s just pain free. But then again I don’t drink very much.

I don’t drink when I have my tocilizumab a week before or a week after. Because it affects it really badly, because I learnt from my mistakes. It makes me puke tremendously, I’m out and it makes me so dehydrated when I haven’t got like the tocilizumab in my system, and I know like when I have it, loads of it pumped into me in the week after, before it’s like proper getting like all over my body you can feel it and it makes you when you drink it makes you just try to chuck out all like the substances that the drug, drink so. But my nurses said there’s no harm in you having a drink now and then, but doctors are like, No don’t drink But it’s, they say you can, it’s not, it’s not illegal to drink with medication so it’s your own personal choice, that’s how I think about it. And if it makes you feel good at that particular time then do it.

Do you get ill if you drink because of the methotrexate? As in vomit?

No I don’t. Which at first cos, see I know that it can make you really ill, but especially when you drink and with the methotrexate and I know that it can make you sick, so at first, when I first started to drink on it, I don’t drink a lot on it, but you know I drink a little bit and get a little bit tipsy or whatever, but I’m not one of these people that likes to get completely bladdered anyway. I don’t like being, it’s like the people that you see that can’t walk or just in such a mess they don’t know who they are, where they are, I don’t like being like that anyway, I’m one of these happy people so I like to get a little bit tipsy, and stay at that level and just dance. But no, I’ve never got sick off drinking and taking the methotrexate, which is good I suppose.

I take methotrexate once a week as a four tablet piece sort of once a week that dose, but I normally take it on a Sunday because we always have a Sunday dinner as a family, we’re always sat down at the table. And that’s, they say to take it with a big meal, so I was like that’s as big as it’s gonna get, so I always take it on a Sunday evening after I’ve had that meal. So really I suppose that is true cos the only nights I’d ever go out is a Friday or a Saturday night, cos I work for the rest of the time so those are the only times that I would ever go out and drink. So I don’t drink during the week, so I suppose that is true cos I suppose that’s the time where its least in my system so I’m due to take the next dose on the Sunday.

But I don’t know, I’ve never had an effect from it, but admittedly I’ve never tried drinking on like a Monday night or something, after taking it. So I don’t know. Maybe.

But maybe that’s something that I’m just really sort of lucky to have. Now it’s a bit different at work because I’ve quite recently started, there’s only like one person that knows I can’t drink, so he’s constantly on the lookout now, so he’ll, when he’s pouring my drink he’ll just pour something that we pass off as vodka and coke, but it’s not, it’s just coke. Or you know I’ll get to my third drink and he’ll be like, Okay, have you had enough But yeah I’m lucky in that sense. But yeah there is a massive stigma, there’s a massive pressure, definitely at university, even at school, later on at school, even now there’s a pressure to drink. But you’ve just got to be strong willed enough to be like, Well look, I’m having you know, no I’m not drinking tonight or, I’m gonna have two, but it doesn’t mean that I can’t have a good timeOr that I’m any less of a, you know a better person for it. Cos you know if you’re still fun then what’s, what’s the issue really?

That’s my one downfall. I think I take it a bit more seriously now like I think for so long I was told that I couldn’t drink, couldn’t do all these things and it was kind of like that was the one habit that I was like, Well, that’s mine. You know, I’ve always done that. So you can’t take that away from me But now it’s more of a case of social smoking, so I’ve gone from, you know, considering what aspects it has on my health quite seriously now. So no, I’m not allowed to do it as much as I’d like to but I suppose the odd one occasion when I’m with friends in the pub or something like that but no, I wouldn’t class myself as a smoker.

I wouldn’t even contemplate it. The cocktail of drugs that I’m on at the moment, I think adding anything else into the mixture of that would terrify me. And purely, I just wouldn’t recommend it to anybody because I just see how important health is now, you know, and what you take for granted. So to be putting things like that into your body and into your system, whether you have arthritis or not, it just totally defeats the object of trying to be healthy.

And, you know, again my opinions on that have changed as I’ve grown up and as I’ve battled with this disease, you know. At university, things were very different, you know. It seemed to be all around you and it wasn’t, you know, a big deal or anything like that but now it’s kind of got to the point where it’s like, why would you force something upon yourself that will make your health worse if you have the choice not to? So that’s kind of where I see that.