What does it mean for a person with CF to drink alcohol? I mean can you do it? What do the doctors advise you? How do you feel?

Yeah. Well I first got drunk or not drunk, I was first sick of alcohol, whether I was drunk or not I don’t know, when I was quite young. When I was like, with some family friends at like a weekend away and we like snuck some bottles of Bacardi Breezers and I ended up being sick off a top bunk. And that was enough to put me off alcohol until I was about 16 like. And I started to drink socially at parties out with friends and then when I started going out round pubs when I was like 16, 17. I’d drink at the weekends. Like I wasn’t drinking an excess amount of alcohol. I was just drinking about the same as all my friends and just getting tipsy and having good fun. And it was, it was, it was absolutely fine. Like it was fine having CF for me and drinking alcohol. It was. It wasn’t a problem. It didn’t really affect, it didn’t affect me any more than it affected my friends.

And everything was fine. And then when I was 17 it was one occasion when I had more than I’d ever had before. And that was when I ended up in hospital ’cause I’d been at a party for about twelve hours. It was a party that started. It was like started at like 4 in the afternoon and went on ’til like 4 in the morning. And I drunk an excess amount that I’ve not, I’d never drunk that much before. And that was when my body really reacted to it. And that’s when I ended up in hospital. And that’s, I’ve never drunk since then. And I’m not sure if anyone else has ever had that sort of experience but I don’t really know ’cause I can’t drink anymore.

I have had the odd drink since and I’ve always got the same sort of pain that I had when I had acute pancreatitis. And I just thought well it’s not worth it because acute pancreatitis is such a serious condition and is so painful it just wouldn’t be worth drinking for the risk of that happening again. So now I don’t drink.

I luckily, I manage to have a good time without it and it doesn’t really affect me too much. The only time it affects me is when everyone else is really, really drunk and I’m not really hyper. ‘Cause I get quite hyper and quite full of life when I go out anyway. But if I’m tired or not, not really with it and everyone else is really drunk then I get a bit fed up. But that doesn’t really happen very often. So I have a. I always manage to have a really good time without it.

And then when I was at school and in school I was restricted from a lot of things. Going out with my friends and stuff and that I, I couldn’t drink even though I don’t want to drink but you know, I’ve tried like a drink or so but it has, it did have, it gave me a sickle-cell attack in the chest and it was very, very bad. I had it for like. I had the attack for, or the pain for about two weeks, two, three weeks with the pain.

And this was after you drank alcohol?

Yeah after I drank alcohol so I’ve never drank since. I don’t really like it anyway. My… In high school a lot of my friends really liked sports either if it was gymnastics or to football or trampolining or something. I like sports as well but I had to, you know, restrain myself from a lot of it. Yeah so. Yeah I liked football as well because I was a tomboy in the high school and I liked football and everything. And I wanted to be in the boy’s side but I wasn’t allowed to because of the sickle cell. And it was very scared about if I had an attack or something. Yeah so.

And tell me about that episode when you drank alcohol?

Yeah. Well it was my friend’s birthday and we went out to go see a brother, friend. We gathered together. Put our money together and we knew we were going to have a good time. So we bought some vodka like, more about ok. About a bottle this big for ourselves each. So we had a bottle and we were having a good time and everyone was just like, ‘Ok I dare you to drink the whole bottle in 10 seconds’ or something like that or in a certain amount of time. I was thinking alright then I’ve got to do this. So I was like ‘Ready. And then I drank it, drank it, drank it and I felt sick after. I just threw the bottle into the, the railway of the train and stuff. And thinking, ‘Right then I did it. Like yeah, well done, well done.

And after a while it was just, it was outside as well, I was on the street. So I had the vodka and then I had the, I was outside as well to make it even worse. And then after about an hour and a half we were just, you know sitting down, just talking about an hour and a half. I had this big, deep, sharp pain in my chest and all around my stomach. I was thinking, ‘What is this? What is?’ I thought I was going to die. And we was outside, it was just like at the train station and I, I seriously thought I was going to die and I just fell on the floor and I was like, I was screaming and screaming and my friends were like, ‘Oh Misha what’s, what’s going on? What’s wrong?’ And I was like, ‘It’s a sickle cell attack, it’s a sickle cell attack.

And because they’d never been there when I’ve had an attack they were so scared. They were going to ring the ambulance and everything. And so it was like, ‘What, what shall we do?’ I said, ‘Let me just go home, let me just go home. So we had to travel on a train and on a bus and while I was on the bus I was still screaming and I was praying that, ‘Oh god just take this pain off of me right now. People on the bus just thought I was crazy. They thought I was possibly going through labour or something. And we got to the girls house and I just went to the, we went to sleep. You know she told me to eat something first because it’s like well you don’t really eat something then you haven’t got the strength to, you know, encourage yourself and say, ‘Hey this pain can go, this pain can go. And we had all. And then she made me a hot drink as well.

But during the night I was tossing and turning. You like, it takes you hours upon hours to get to sleep because the pain is just so much that you, you just can’t, you can’t sleep. So I went to sleep about, like we got

Like I say I don’t tend to change my diet too much but at the same time I, I don’t drink alcohol and I don’t smoke and I think that’s very important to keep yourself healthy because if I did those things as well then I don’t think I would deserve the new drug that I’m on. I don’t think I would deserve most of the drugs that I take. ‘Cos if you’re not putting in the effort in yourself then sometimes I don’t think that you deserve, you know, some of the ground breaking drugs that are on offer unless you’re prepared to put in the hard work as well with it.

And I would also advise I know it’s, it’s difficult if you’re used to smoking or drinking but I’ve, I’ve spoken to people about it and they’ve cut out alcohol completely and the effects have been mind blowing. They’ve felt the arthritis completely ease up and likewise with smoking as well.

I can’t remember. I mean it has always been said that you shouldn’t drink or you should drink in extreme moderation. Because you know you are on the medications and that you shouldn’t really drink. Or if you do you have to be extremely careful. I mean I have always known that anyway, and I didn’t really drink up until I went to university and you now was when I was 20 and I mean it is only in moderation now. Now I am always extremely careful but there is probably some people that shouldn’t drink at all. Because of their illness etc. So be extremely careful.

Yes and does alcohol interfere with your medication in your case?

Well I think it’ I don’t know of any effects from it. I mean I am never, I mean I am on drugs that you can’t drink or you shouldn’t drink or only have a little bit but I have never been affected by it. You know I don’t get any reaction you know so I can still have a good time, if you like. And no there are some people that it probably would affect. Everyone is different and they can take certain things.

I’m always very open about my CF. And I just told if anyone asked like for example the reason, obviously I don’t drink alcohol. If anyone ever said to me, ‘Oh, oh why don’t you drink?’ Sometimes I would just say, ‘Oh because I don’t want to. But then other times I would actually explain it to them ’cause I think it’s good for more people to be aware of CF. And if I feel like I don’t know, explaining it to them if I’ve got the time and energy then I will, I will explain it to them. And I think it’s good that more people are aware of it.

What do you, what do you say?

What do I say?

Yeah.

Well say for example last night I was out with all my housemates’ and all my friends and then there was another group of people there. One of the, one of the people we knew and they kind of came over and we all introduced them and then said ‘Hi. And then someone was like, ‘Oh I, I’ll get the drinks, like what do you want to drink?’ And if I just said, ‘A coke’ they’d be like, ‘What a coke and vodka?’ And I’d be like, ‘Oh no no, no just a coke. And they were like, ‘Why?’ And I’d be like ‘Because I don’t drink. And sometimes they’ll go, ‘What?’ Like ‘Why don’t you drink? That’s just weird. Like that. It depends like different people have different responses. Some people are like, ‘Alright, ok you don’t drink. And they kind of like, ‘Oh like why don’t you drink if you mind me asking?’ And I kind of say, ‘Well do you want the short story or the long story?’ [laugh].

And then if they say, ‘Well how does that affect your pancreas?’ I’ll say, ‘Well when I was 17 I had got acute pancreatitis and it’s, well it’s left my pancreas quite delicate and I’m worried that if I drink again then it could. If I drink alcohol then it could set it off because alcohol is, obviously affects the pancreas. And then people always go, ‘Oh right. [laugh]. Sometimes they ask more questions and sometimes they don’t but usually it shuts them up when I say I’ve got CF.

Last, not last week, a couple of weeks ago I was in I was in Leeds staying with one of my friends and we were at a Halloween Ball. And he was helping to organise it so I said to him, I said, ‘Oh well I’ll serve out like. I don’t really know many people here so I’ll like help you if you want. So I said, ‘Well I’ll serve out the punch. And he’s like left me to it and a group of guys walked past and I gave them the punch and they were like, ‘Oh do you want some?’ And I was like, ‘Oh no I’m ok thanks. And they were like, ‘Oh have some, have some. I was like, ‘No and like ‘I’m, I’m alright. Thanks like I’m fine I’ve got another drink. And they were like trying to make me drink this punch. It sounds daft but it was, it was kind of like they were just joking around. I was like, ‘No, no, no. And, and one of them went, ‘Why, why don’t you want it?’ I was like, ‘Oh well I can’t drink alcohol. And another one went, ‘What?’ And I, so I didn’t say I can’t, I said, ‘I don’t drink alcohol.

And on of them was like, ‘What you don’t drink alcohol? Are you a weirdo? Are you a freak? Is there something wrong with you?’ And I was kind of like, ‘Well actually [laugh] yes there is something wrong with me. But my friend that, that was with me he knows that I’m really open about it. So he was like, ‘Oh she’s got CF. And it was just, everyone kind of went quiet and kind of looked at me. And I just felt really, it was the first time in a long time that I’ve felt really kind of I don’t know, like almost a bit like touchy about it like I didn’t really want everyone to know. And like I just felt that everyone kind of looked at me and was like, ‘Oh right. And

Okay so you were telling me about, that the nurses told you about drinking alcohol.

Yeah they explain to you when you’re quite young, they kind of, I guess they want to filter into your brain before you get to eighteen and think ‘oh let’s go out and get drunk with all our friends’ because I think once you go out and you get really drunk I think, I’ve been told you’re more likely to become very drunk, very quickly if you’ve got diabetes and, also because you’re drinking diet drinks, you go into this new study said that if you drink diet drinks you’re likely to get, drunk quicker, so, also if you are drunk and you have a hypo you get, you’re not gonna be as aware of your bodily functions and you, it can cause you to go into a fit, even a coma so it is important that you know what, that you know the effects of what alcohols gonna do before you get there, so they kind of tell you every [laughs].

Has that information been useful to you? Have you applied what they have told you?

I’ve kept in mind what they said, I went to Barcelona with my school last year, or this year, and most of my friends got very, very drunk and because I told my friends I wasn’t allowed to drink anything I’d have one alcoholic drink a night and that be it. They were all very, even when they were totally drunk they actually said, ‘You have to only have one drink. And they ordered me Diet Coke all night which was very nice of them, that I think if I had’ve, if I hadn’t of known that alcohol would really affected me I may have drunk more than one glass and then probably got very drunk and not been able to get very drunk friends back to our hotel and they wouldn’t have got me back to the hotel so, in a way it’s done me good [laughs].

So that’s information given to you early on was quite, is quite’

Yeah.

‘useful?

I think it’s very useful if you, you don’t know what you’re gonna be like until you’re older ands, at the moment everybody around me is, well a lot of people around me are having a lot to drink, alcoholic-wise and, when you’re offered a lot of alcohol you’re very tempted to say yes but you know there’s something inside you and you know that it’s really awful to feel as if you’re low and you’ve seen what drunkenness can do, make other people feel like, you don’t wanna combine the com, you don’t wanna combine the two so you do you stay away or you do choose to stay away [laughs] from the alcohol because that.

Okay and what about smoking, do you smoke?

I didn’t smoke, I’ve always been told it’s really nasty habit and we shouldn’t do it, and I think that’s kept me away but also the diabetes nurses, I can’t remember the reason why they told me not to smoke but when I was younger they said, ‘You shouldn’t smoke and it’s not gonna be best for your diabetes, it’s gonna be beneficial to you if you don’t smoke. And I’ve kind of taken that on board and said, ‘Right I don’t wanna smoke, I’m not going to smoke, I’m gonna stay away from people who smoke.

Do you think that having diabetes might have a kind of consequence for your social life or not?

I’m less inclined to drink because of my diabetes and I, my friends they kinda know that I’m, if I go to the party with them I’m gonna be the one who comes home sober which is a good thing for them because they’ve got someone whos gonna help them when they’re throwing up everywhere but in a way, don’t wanna go to all the parties because you know you’re gonna be the one helping everybody else get home when they’

Yeah I imagine if I, if I started smoking or I don’t know, if I started taking drugs or if I stopped playing sport maybe. That, I think, I think that probably would make it worse, yeah definitely. But I hopefully won’t have to come to that situation [laugh] so.

Talking about smoke if you are in a smoky place does it, does your chest get tight or?

No it doesn’t seem to affect it but I don’t usually hang around places that are smoky that much. Say if I’ve gone out to the pub or a night club if there’s someone smoking I try and like move away, move to a place where they’re not ’cause it’s certainly the minority of people actually smoke at clubs and pubs so. And I think there’s a new law coming in actually banning smoking in public places which would I think really help. So it’s a really good idea. But I just move away from them if someone’s smoking.

I avoid, avoid smoking yeah definitely.

What about alcohol? Do you drink alcohol?

Not on a regular basis no. I have a, one drink sometimes when I go out but not, I don’t drink that much. So and it doesn’t seem to affect it. So I’m not a heavy drinker so I don’t know.

Based on the experience of you and other young people that you have, that you know with sickle cell what do you think are the main problems or difficulties for young people?

With sickle cell?

Yeah.

The main problems? Just doing things that, that you would like to do. Like you just sometimes you just want to do what you want to do. Just I feel like doing this today so I want to do it. As a teenager that’s what you feel sometimes. You think you know, I just want to do this so why can’t I do it. But you can’t [laugh] do that when you have sickle cell you don’t, you need to be wise and you just need to. Yeah it’s that’s one of the main problems like if my, if my friend’s doing this then why can’t I do it. I’m the same as them but I just have something else and thus I think that’s the problem sometimes.

Yeah because for some teenagers it must be difficult to, to grab that and to understand.

Yeah. At some time, sometimes it’s not, for some reason like teenagers they just want to smoke. They just want to smoke. Like I’m bad ’cause I’m smoking, yeah can you understand. So some sickle cell people always want to, some people with sickle cell they just want to smoke because they’re friends are smoking and. I haven’t really smoked like you know I’ve had a cigarette but I have tried it one time and it’s not nice [laugh]. But there’s.

When I was in Year 9 or Year 10 or something I had like an Older. And like the Older is like a friend and they will help you in times of need and troubles and maybe if you have a, if you had a fight with your friend then he will come and help you and you know, be a person for you and give a quick view of certain tools and stuff. And at that age I was getting quite bad and I wasn’t really focusing on anything. Like I wasn’t going to school sometimes and this Older he used to smoke and he would like, I would smoke with him sometimes but after a while it just gets to the chest. So smoking and drinking is like, them two things they’re not on my side. I hate them. Yeah. Even when like if someone’s smoking and I’ll walk past them it just gets to me. I just want to get, ‘Oh gosh’ It’s just like. But them two things I’ve had experiences with them and it’s not good don’t think. I hate them. So sometimes when you’re a teenager you just want to do what you want to do. If you can try and do what you want to do but you’ll see that the more, the more you do what you want to do the more sickle cell attacks will come. You have to be wise and know I can’t do this and I can’t do that. So I’ll do this instead.