And what is it that you value about your GP?

She’s very understanding, and she kind ofshe listens when I talk. I’ve had GPs in the past where they’ll kind of just go, no, we can’t give it to you, or, here you go; and give you a prescription and not really kind of talk to you or tell you what you’re taking and things like that. But my current doctor and GP, she’ll goif I have to go on any medication, or antibiotics, she’ll explain it down to the finest detail. And she doesn’t like me going unless I’m happy and I fully know kind of what I’m doing now. So in that way sheshe listens I think, because in mywell, in my experience in hospital, um, the night I went into ITU the second time, I was aware that I went into multi-organ failure and a peri-arrest, and about five hours prior to that I kind of I knew something was going on, and I was buzzing, and said, you’re a drama queen, there’s nothing going on; and then five hours later I kind of went into multi-organ failure and stuff. So I really appreciate it when a health professional kind of listens for, like, if I’m having bad sickness she’ll ask me to explain it, and she listens and takes it in, makes a note, and then she kind of goes through what’s best, and I think that’s kind of what a GP should be like, kind of talking to you and explaining and things like that. And then sheshe listens really well, that’s what I appreciate the most; because I’ve had so many professionals kind of not really listening; so when someone does listen I kind ofyou appreciate them a lot more.

I think when you you’ve got to accept the situation that you’re in, that’s definitely as a from a personal perspective that’s the first thing that you need to have if you’re going to try and keep going day to day; because if you haven’t got the fight you’ll just kind of drop every time, so you’ve just got to keep kind of always go with your fists up, I like to think. So you’re kind of prepared for anything that’s going on. Just I think it’s just natural, you just I think you learn things from other people as well, kind of like you learn about certain things; with the support group for instance, they’ll tell you things, they’ll put recipes up, they’re like, you know, kind of friendly when it comes to low fat and your diabetes and things like that; so you just pick things up and adapt it to youryour day-day life. Mm.

I’m interested in, in kind of how involved you are in the decisions that your doctor

Yeah.

makes, or not?

Yeah. When I was in hospital I learned a lot with the drugs that I was on and things like that. So when I went when I struggled with my anti-sickness, there was an anti-sickness pill that wasn’t working, so I spoke to my support group, and I was kind of, well, what anti-sickness would you recommend; and I asked my mum what I was on in hospital. And then I’d go to the GP, and I had like my it’s not working so can I try cyclizine because that helped me in hospital and they’re kind of like, oh okay then [laugh]. I dodo a lot of research for when I go to the GP, because I think I know my body more than anybody else; they can have you down with a medical condition but you kind of don’t know it until you’ve got it yourself. So I likeI do a lot of research, because I don’tnot that I don’t trust my GP because I really do, I trusttrust her and I like her; but I kind of I feel that from going through that experience, the seven months in hospital, I kind of know when my body isn’t happy or if it’s not reacting well with a drug.

Because there was it was a time in hospital where they were giving me this drug and I was all over blotches and things like that, and they’d be kind of like, we don’t know what done it. So I’m like, have you changed any of my drugs; and then they’d go, we don’t know, you’d have to ask your doctor. And it’s a bit like, well, they’d pushed things through my NG tube because I had that but I I didn’t have a clue what they were pushing in. So it’s a bit like that’s why I do a lot of research now, because if the person I’m going to for help doesn’t know what to do, I want to have some idea ofkind of like a backup plan.

So if she was kind of like you know, your anti there’s not many anti-sickness out there, I’d go, well, there’s and there’s cyclizine, and she’d she kind of went, yeah, that could work, and I kind of have this backup plan for if they’re not going to agree with me, I kind of throw some words, and I’m like, yeah, cyclizine worked with me.

On Facebook there’s a pancreatitis UK and Ireland group, and it’s basically it adds people who’ve had pancreatitis or relatives, and you can go If I’m having a bad day I can put it on there, and everybody in the group will kind of comment and give you advice, and we all kind of well, it’s kind of like a little group of friends, we all kind of advise each other and sometimes even if you just want to have a moan you can just have a moan, and people are like, oh, I know. And it’s it’s nice like that. It’s kind of like support but in a friendly way, in a kind of more personal way; and even I’ve met a lot of friends through it as well.

I think you learn things from other people as well, kind of like you learn about certain things; with the support group for instance, they’ll tell you things, they’ll put recipes up, they’re like, you know, kind of friendly when it comes to low fat and your diabetes and things like that; so you just pick things up and adapt it to youryour day-day life. Mm.

The kind of way that you have to manage the regimens for all these drugs, is that something that you’ve had to work out for yourself along the way, or?

My mum does it for me. I had she counts them, I’ve to have 18 tablets at night, and then I have [pause] oof, about 20, 22, something like that, during the day. But my mum lays them out for me; because of my brain injury I kind of I used to put an alarm on my phone, but it’s kind of like I’d see that it was there but I wouldn’tit wouldn’t kind of take it into my brain, so I’ll just I just won’t take the tablets because my brain’s kind of somewhere else. So she even handles my drugs for me. Also because of my mental health problems as well, because I do have quite low periods, and I think it was about a year and a half ago that I tried to overdose with my Oramorph, so she kind of keeps my meds for that, just to make sure that if I’m having a bad moment that there’s kind of nothing around that can make me feel make me do something that I’d kind of regret or something like that. Because when I’m ha-, when I’m kind of happy I’m happy [pause] but I just drop low very easily, I can be laughing at one minute and then I’ll be on the floor the next, crying, kind of devastated and for no reason. So, yeah, she looks after my tablets during I’ll have to learn soon though.

I try to be as positive as I can, but then at the same time I know that with age things are going to get harder, because I’m going to have kind of more pain as I grow up, and sometimes I use my walking stick, but I try not to use it at all, because I can’t I don’t know why, I kind of fight it; it helps me so much, it gives me a lot of support, but I have it’s this big wooden one, and I just feel embarrassed when I’m walking around with it; so I sometimes my pain can be awful, just because I’m too proud to walk round with a wooden walking stick.

I do feel that sometimessometimes I feel that I’ll never be able to work again, that scares me, because even, oh, growing up, I’ve volunteered. I’ve volunteered since I was about 11, to 18, so I’m used to working and kind of doing and courses and things like that. So now with with my brain injury I kind of I strug-, I used to love reading, I did English literature for my A-levels, and I kind of every ten pages I’ll have to go back five to know what happened, to remember what happened again; and that kind it’s kind of And I always worry if that’s going to get worse, so You see these horrible stories sometimes, like I’m if your diabetes isn’t the best, if you carry on with it not being good, there are people that have kind of like lost their feet, and things like that, and it’s a bit [pause] it’s a bit scary. It’s because I think I’m scared because I don’t I’m positive but I’m scared because I don’t know what’s going to happen in the future. Mm. That scares me a bit.

And I have and one of the reasons I go to my counsellor is because I found that if I’m going downstairs in my house, before I go to the down the stairs my instant thought would be, you’re going to fall down there and then you’ll break your neck. And when I closes the door, when I go if I go out, I’ve kind of half going to fall down these steps. So I’ve got this constant kind of like a constant voice in my head, with all these worst-case scenarios, and then I do touch wood, and I do that about 20 times a day, touch wood. Because I’m so because I know how bad I can get, because I I was basically dead twice during it, I’m very aware of how things can change. Like when I went into A&E they kind of were like, oh, there’s a four-hour wait; and I said, I’ve got some chest pains as well; and I got seen straightaway, and three hours after that I was being put in the High HDU and being sent to ITU. So it’s quite mad that if I hadn’t have told a white lie I kind of I probably wouldn’t be here now.

So because I’m used to the worst-case scenarios I always kind of have that fear. And I and now that I’m never going to work, and things like that. But I try not to I try to keep that to myself because if you if you tell your if you talk to your mum, that you feel like that, and your family members, and your support groups and things, no, it doesn’t just affect you, it affects the whole family, when you’ve a mental health condition and kind of with any health condition, so I try to keep That’s probably when my depression is worse than it is, because I keep my fears inside and I’m positive, but there’s always that person at the back of my mind saying, you shouldn’t be it’s kind of like a little devil.

I’ve always had a good GP, it just so hard to get appointments and things like that, you kind of have to wait a little. But my G I my newest doctor is amazing, she’s very supportive and she if I go in, like, to do with my asthma or my chronic pain she’ll ask me to book an appointment for three weeks’ time to follow up. So there’s a lot of support that’s being given to me through my GP.

I went into a hospital in about three years ago, and ended up having necrotising pancreatitis, and I was in hospital for about seven months, and I was in and out of ITU quite a lot; my doctors used to tell me that I died three times during it, so it’s something that people can say. But I have chronic pain now. I have asthma, diabetes, chronic fatigue, and depression and anxiety, for I’ve got a couple of mental health problems as well. I was fine before I went into hospital but because I was so poorly I came out and a lot of my yeah, I’ve got a bit of a slight brain injury as well, I’ve got a lot of my pain is neuropathic pain; so I’ve got they’re kind of looking into that at the moment and getting assessments done and things like that.

So does everything, all the conditions that you have, all stem from this

Yeah.

hospital episode?

Mm.

And what was the reason for that in the first place?

They don’t know, I had idiopathic I think that’s the right word pancreatitis, there was no reason for it. Normally I think it’s gall stones that a lot of people go in with; but they just had no idea. It took them a month to kind of diagnose that I had pancreatitis and by that point I wasn’t breathing properly, I had a lot of lack of oxygen; and that’s kind of where the brain injury stems from. And then I was in intensive care for six weeks, and then came out for two months, and then I went back and had three spells in ITU. And I lost all my hair because of it as well, so that was quite weird.

Now as far as you’re concerned are these all separate conditions or are they all related to this

Yeah.

hospital thing?

Mm.

If you get what I mean.

Yeah. When I think of them, or if people ask me about them, I’ve always because I was so poorly in hospital that’s kind of how I work it; because I know I was ventilated five times in hospital, so that it kind of explains the asthma.

Right.

And, obviously my pancreas as well, so that explains kind of the diabetes and the enzyme problems. And I was, with even though I was on very strong drugs in intensive care I can remember practically all of that, and that, you know, my doctor said it’s very rare that people can remember things so specifically; so that’s got a lot to do with my mental health problems, like my depression and my anxiousness. But, yeah, that kind of hospital stay sums it up a little bit for me.

I went into a hospital in about three years ago, and ended up having necrotising pancreatitis, and I was in hospital for about seven months, and I was in and out of ITU quite a lot; my doctors used to tell me that I died three times during it, so it’s something that people can say. But, I have chronic pain now. I have asthma, diabetes, chronic fatigue, and depression and anxiety, for I’ve got a couple of mental health problems as well. I was fine before I went into hospital but because I was so poorly I came out and a lot of myyeah, I’ve got a bit of a slight brain injury as well, I’ve got a lot of my pain is neuropathic pain; so I’ve got they’re kind of looking into that at the moment and getting assessments done and things like that.

So does everything, all the conditions that you have, all stem from this

Yeah.

hospital episode?

Mm.

And that whatwhat was the reason for that in the, inin the first place?

They don’t know, I had idiopathic I think that’s the right word pancreatitis, there was no reason for it. Normally I think it’s gall stones that a lot of people go in with; but they just had no idea. It took them a month to kind of diagnose that I had pancreatitis and by that point I wasn’t breathing and my wasn’t breathing properly, I had a a lot of lack of oxygen; and that’s kind of where the brain injury stems from. And then I was in intensive care for six weeks, and then came out for two months, and then I went back and had three spells in ITU. And I lost all my hair because of it as well, so that was quite weird.

Because of the drugs that they were pushing through me that I’d had rapid, so everything was going towards my heart, all the blood circulation, so I have, I’ve got pain in my feet and my arms and things like that now. So, yeah, it all stemmed from there. It’s quite mad that you go in hospital one day and then seven months later you come out and everything is slightly different.