AcroTales
AcroTales
Episode 16 - Paul
In Episode 16 of AcroTales we speak to Paul from Melbourne in Australia.
With a hefty dose of humour, Paul talks about the road to diagnosis, the challenges faced and how his first diagnosis wasn't the only hurdle. Thanks to the support of his family and the ability to laugh at himself (this episode does contain a bit of adult humour!), Paul's message is one of hope and adversity.
Hello and welcome to AcroTales, a podcast that explores the fascinating world of acromegaly. Acromegaly is a rare condition caused by a benign tumour in the pituitary gland causing an excessive release of growth hormones. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. And in each episode of AcroTales, I'll be talking to fellow acromegalics from around the world about their journey with this unique condition. It's episode 16, and I am really pleased to welcome Paul from Melbourne in Australia. Paul is 52 and was diagnosed with Acromegaly in 2005. Paul, welcome to Acrotales. Thank you, Dan, and good morning to you. Alright, and good evening to you, I guess. The joy of the internet. That's a wonderful thing, isn't it? It is, it is. And uh it's such a wonderful thing that you've obviously uh offered to submit your story to AcroTales, which we're really grateful for. Perhaps you could start off by telling us about the early days, how you how the the symptoms that you started to notice and how you reached your diagnosis.
SPEAKER_00:Okay. Um so I it was about 2003 and I had my first child, and I was a very, very active, very fit person. I was um I would ride around the bay, and that's 220 kilometres, and I'd do all these different fitness things, and I noticed that I I was starting to feel tired and sore a lot, and um just felt started to feel run down, which well, maybe I'm just exercising too much, so I sort of eased myself down a little bit. And then over time, little things started to look a bit strange, like I noticed my shoes were getting tight. That's a bit strange. Um I'd get another pair of shoes, you know. Yeah, they do, they don't, don't they? It's a funny thing. You know, my shoes are shrinking, so I'll go out and buy some new shoes. Um I'll just to preface that, my um development of the disease was quite rapid. So even though it had taken probably taken quite a while to get to this point, uh the the speed that things changed and it was very quick. So I noticed like, well, within six months, do you want all my shoes are tight? And then my wedding ring was getting tight, and um I started getting headaches and started not feeling very well, and uh it got to about 2005, and I had carpal tunnel in both my hands, and I had to have surgery and uh horrible experience, carpal tunnel. And um Could you maybe just expand on what that is? Just for anyone that doesn't know. See what we would call RSI, it's where you you get nerve pain running down your arm from your hands, down your wrists, down your arms. And um, I had it in both hands, what would happen is you'd go to sleep at night time, and I'd wake up and my whole hands be like someone's pouring whole hot metal down my arms. It was just and that then they'd lock up, my whole hands would just squeeze into a into a little tight ball and be and I'd be absolute agony. And so I went to a doctor and he said, Oh, you've got carpal tunnel. And what that is, is that your nerves are getting rubbed by the tendons running through, and what they'll do is I'll nick the carpal area and relieve the pressure. So I went into uh get the surgery done. I had both wrists done at the same time. And as I was going in, a surgeon was there and he looked at me and he goes, Oh, do you might have a look at your feet? And I went, Yeah, you are whipping my wrists, right? And he goes, Yeah, no, no, no, just curious. Can I look at your feet, please? And he looked at my feet. And he goes, Oh, get a graph hormone test. And I'm like, Why? And he goes, Oh, no, no, no reason, no reason, just get a graph hormone test. Uh okay. So anyway, I had the couple tunnel done and I went and got the graph hormone test and I went and saw my GP and GP's like, yeah, it's all fine, no problems. Anyway, I got worse and worse and worse, and I kept telling my wife, I feel really old. I said, I feel old, my body feels old, I feel tired, I feel old. Um, I went to take my wedding ring to a jeweller and I said, Could you make my ring fit my finger? And the jeweller said, There's no way this ring ever fitted this hand. And I'm like, Well, this is the ring that I got married with three, four years ago. Um, you know, it's definitely my wedding ring. And they're going, There's no way that this ring fitted this finger. And I'm like, it's a bit strange. So anyway, I got really run down, really depressed. I went through all the classic sort of self-scale signs, got extreme depression, um, very, very unhappy and very unwell. And a colleague of mine said to me at work, uh, go to the doctor and get a scan. You're having too many headaches. You're having lots and lots of headaches. We want you to go home and get yourself tested. So I went and saw my GP and I changed GPs at this point. And um he said, Look, uh, I'll get you uh a sc a CT scan. And they had a CT scan, they said, Well, we found something. We we found a lump and we're we're curious about it. And so they then did some more tests and um they said, Oh, look, I think we're gonna send you to see a specialist on this one because it it looks like there's a tumour there um on your pituitary gland, and we've got a surgeon we want you to have a look at. So I went and saw the surgeon and uh he's one of the sort of top surgeons in Melbourne. He looked at me, sort of went through the door, and said, You mean oh you've got acromegaly. I said, I beg your pardon. And he goes, Oh, you've got acromegaly. And I'm like, hey, what makes you?
SPEAKER_01:Yeah, it makes me at you too.
SPEAKER_00:Yeah, yeah, yeah. Lovely guy. Because he goes, looking at you, he goes, You're you're you've got the classic jaw, you know, look at your hands, your feet. And I told him about the story about the surgeon two years beforehand. And he goes, Well, that was well spotted. And he goes, Did you have a uh blood test? I said, Yeah, I did. And he goes, Well, where's this blood test? I said, I can get it for you. And I went and got it for him. And he he looked at it, so I had to go back, obviously, a visit a few weeks later, and I gave him the the the um report, and he said, Um, they've misread this. Oh my god. He goes, they've assumed you've had a growth, you've done a glucose tolerance test. And uh he goes, they haven't looked at this properly, they haven't looked at your levels properly, because he goes, You're way over the limits. And in fact, I was about 14 times the limit um at the time, which is obviously why I felt so poor.
SPEAKER_02:Yeah.
SPEAKER_00:Uh so by that point, there, you know, I I said I had I was in pretty bad state health-wise, very barrel chested. Um, my fingertips, I couldn't feel my fingertips, my tongue felt like it was way too big for my mouth, all those sort of classic problems. You try to talk and your lips are tripping over your mouth. And uh, I think they said common for people with acromegaly. And um, and so he said, No, we'll we'll get you surgery and uh we'll get that as soon as we can because you need this. And I thought, thank you very much. Um, so I went through private because and um so I could choose when and where and all that sort of thing. And I went in the first time, they couldn't get the tube down my throat because I it was too swollen and they couldn't get it in, so they said we'll have to try again. We weren't expecting to be this hard. So I went back a week later and they did the surgery. And I remember waking up the next day and and um I just felt so different. And it's amazing, isn't it? Oh, huge, huge. I I I I remember sitting talking to my brother-in-law, and I said it was like somebody, it's like when you're in a room and you don't realize it's full of smoke. And then somebody opens a window and puts a light on, all of a sudden it's it's as clear as day. You're like all of a sudden, wow, I can see everything and I can hear everything. And my head was like that. All of a sudden, my head was clear. And I'm like, wow, I I just feel so alert and awake. And then so I, you know, I I've nurses are saying, Do you feel any different? I'm saying, I I feel like I'm totally like I used to feel. And I thought, what about your fingertips? I said, Well, my fingertips feel weird, you know, they like and they sort of feel soft. And this is within the same day. I couldn't believe how dramatic the change was. Yeah, and um, I remember at night time I was lying in the bed and I felt really weird in the chest, really hollow in the chest. And so I contacted the nurse, they came in and they put the machine on me and they said, No, look, your heart's you've got a slow heart rate. You know, you're very obviously we're a very fit person. Um, but uh your heart's fine, it's beating perfectly well, but it's just slow. I said, but I feel really strange. And then I realized what it was is I couldn't feel my heartbeat. I was so used to feeling pressure in my chest.
SPEAKER_01:Yeah.
SPEAKER_00:Um I felt like my like I couldn't feel my heart. And I was like, this is really weird. So the initial surgery was wonderfully successful for me. Like I it really transformed my life, and um, you know, it was hugely successful. Uh the transformative.
SPEAKER_01:Did they um I mean that's amazing, and and I can completely identify with that. I remember waking up from my surgery and my hands, which had always been sweaty and clammy for the first time, felt dry.
SPEAKER_00:Yeah.
SPEAKER_01:And I remember holding my hands up to my family who were stood at the bottom of the bed and going, feel my hands. And that and that might have been the morphine sort of playing a part in that, but it was it was you just immediately felt something different, didn't you? And I guess that's the speed of hormones. Uh it it's it's a it's a huge change. Did they did they advise whether it was a micro or macro adenoma? Did they take a decision? Three and a half. So quite a bit, quite a big one then.
SPEAKER_00:Yeah, he'd said it. I'd probably had it for about 10 years. He goes, What tends to happen is he goes, it's quite common to get tumours. He said, It's not, you know, you'd be amazed how many people the public do have them. And he says, but there can be like a little thing that happens, all of a sudden it secretes. And he goes, and for people it can be okay, but for sometimes it's like a tipping point, he says, and and he goes, he thinks for me, he goes, looking at the tumour, he says, Look, you've probably had this for 10 years. Um, but he goes, and all those indications you're talking about, the carpal tunnel and all those sort of things, your shoes, your ring, um, the gaps in your teeth. And they'll start looking at photographs and that. He goes, you know, you clearly had it for quite a while, but you hit a tipping point where your body could no longer cope, where where, you know, all your joints started to ache, where the depression started to kick in, uh uh snoring, major problem. Um, so all those sort of things came in at one sort of time, you know, quite quick. Within six months, eight months, I was I just literally just went down a hole, um, which I'd rather not have. And um it was hard. I mean, just got married, I had just had my first son, and and it was it was a very difficult period of time.
SPEAKER_01:Knowing that this could have been diagnosed two years earlier, did you did you feel a degree of, you know, were you annoyed?
SPEAKER_00:Um if we I think if one does, that's natural. But I'm the sort of person, Dan, that uh I accept the world as it is, you know, we're imperfect beings. And uh Dan, I I was so grateful after surgery to feel so much better and to realize, you know, I mean, I I felt sorry for my wife, you know, I felt sorry for my son, how much I'd sort of just collapsed. Um, so and it's hard to explain to people how the the the how transformative surgery can be. You know, it's it's literally like being, you know, you you see those uh videos where someone was blind and they get the cataract surgery and suddenly they can see and they start, you know, and and it's like that, it's so instantaneous. Um I had a huge amount of energy come back, uh, which was was great for me. Um so you look, part of me, yes, part of me is angry that that wasn't picked up early, but at the other side, Dan, um I'm grateful that I could have the surgery, and I'm grateful that um I met a good surgeon and I'm I'm you know, I I'm that sort of person. I like to look at the positive in life very much. So that that was initially how it went, and and for eight years everything was fine, everything was very good. I was constantly monitored. Um we used to joke, you know, that um I'll live the longest because of the fact that I'm always being tested. Uh but uh you know, look, uh everything was great, and and then slowly my my numbers started to change.
unknown:You know.
SPEAKER_01:How long was that after the surgery?
SPEAKER_00:About eight years. So if you're looking at it, probably about um 2014. I would have had a few.
SPEAKER_01:Sorry, sorry, go on.
SPEAKER_00:I'm just thinking I would have had so I would have been diagnosed in 2000, I would have had the surgery then 2005, 2000, yeah, it was late in the year. And yeah, 2014, I'd say 13, 14.
SPEAKER_01:And were you starting to notice, excuse me, were you starting to notice symptoms coming back? Yes. Were you going for regular MRIs as well to for them to sort of monitor the pituitary and that did they pick that up there?
SPEAKER_00:Uh yes. Um, like UK, we have a national health service. That's you know, so getting an MRI is nothing, you know, like it's you just do it every every two years or whatever it is, blood tests every every six months. Um and uh the MRI, it was picking up slight changes, but very, very slight. Um and so it was very slow change. Um, I think that's one of the ways I describe this disease is insidious. You know, it's just one of those things that you it just creeps and it just constantly creeps. Um and so yeah, it was just very slight, and I did notice it, like the sweating. I think I think we all know about sweating. Uh we all know about snoring, I think we all know those sort of things. I think we all know about the headaches, um, although it's very common sort of sort of side effects. Um, joint pain started to creep in again.
SPEAKER_01:Um I did you did you did you go to yourself, oh god, here we go. It's coming coming back.
SPEAKER_00:Yeah, yeah. Look, I uh by then I'd had a another child. I had another two children, I think. Yeah, two children by then. So I'd had three, and so by then I'm like, I don't really need that now. Um, but at the same time, um I think I had a fourth Jew. Uh been busy.
SPEAKER_01:Your testosterone, your testosterone was obviously working fine.
SPEAKER_00:Yeah, well, it gets a bit cold in Melbourne. Uh but you know, look, it is it is one of those things where um it's very slow change. And I'm one of the people unconscious that, you know, it's easy to say, oh, it's acro. It's easy to blame things on acro megally, where I mean, just in general life, you know, people snore without acromegly. People sweat without acromegally. So it's it's it's one of those things where I'm very conscious of I don't want to attribute everything to Acro Megally because then it then it becomes a reason for everything.
SPEAKER_01:It's a constant albatross, isn't it? It's like constantly hanging around your neck and you and you're never sort of free of it. Yeah, I understand that.
SPEAKER_00:And I and I I'm as I said to you before, I'm I'm quite a positive person in that sense. I I'm not gonna allow that to happen. So I'm very conscious of, you know, look, is snoring part of it? Well, you know, adults males snort, so females, we all snore, so to some extent at some point. So there's that aspect to it. The sweating was one, definitely there, the headaches is another, they they started to increase. Um, I do tend to get much shorter in temper, so I get frustrated faster. And I noticed that my thinking was a bit harder, so I probably wasn't as rapidly thinking, and so the aches were building up. So, yes, I did notice changes. I did notice, and the first portal there was to go on Sandistatin, uh L A R, monthly injection, and you you sent the site. I think most of the start on the lowest dose, and then we work our way up.
SPEAKER_01:Um and then there wasn't the desire to to go back in for surgery, not straight away because the tumor was too small.
SPEAKER_00:Although it was it was there, yeah, although it was there. Um there was uh it wasn't big enough to get to, right? Yeah, the surgeon's opinion was well, there's just not enough there. And and the idea was that look, if it's this small, we could possibly shrink it with sandastatin. I think that's one of the things that I think um a lot of people do talk about is that sandistatin can help shrink the tumour.
unknown:Okay.
SPEAKER_00:So I think there was that desire. No, no. Um, it looks like I'm uh resistant to medications. So went for all the uh um sandastatin medications, uh right up to the sort of highest doses and blah blah blah. And um, and again my doses kept going, and once I get to about five, six times the amount, I really start to feel it. Um the the um normal level. And um, and so I was sitting there with the endo of my wife, which always goes in with me, and um did the usual, how are you feeling? You know, I'm fine. Um, however, and um she said, Well, you know, look, your numbers are going up, and I said, Well, it's over a hundred again, um you know, which has to be down to 17. Uh this is no good. And um I said, So sanistatin's not working, what are we gonna do? And she's like, Well, I've talked to Peter, the surgeon, and you know, he thinks there's enough there that we can have another go at it, and we'll we'll have another try. So I said, Well then let's do it. So I had a second surgery, so sanistatin, so surgery, sandastatin, second surgery. Second surgery didn't give the same result as the first. So I was conscious of the fact, you know, when I had the second surgery and I'm sitting in the bed and I'm thinking, I don't feel that much different. I thought to myself, well, hang on a second, I was in a real bad state before. You know, I was like, you know, where I should have been 17, I was like 450, 500. So I was never at that stent. Um, and so I thought to myself, maybe it's just slow, you know. And so they did the bloods and they said, look, you know, it's come down, it's half, it's 50 instead of 100. That's that's great. We still need to get down to 17. Um, and so they said, we'll see how we go. And then I think I got down to about 34, which is about double. And then it sort of stayed there, and then it started to creep up again. And so within 12 months it became apparent that the surgery was unsuccessful, the second surgery. That would have been 2040, uh 2014. Um, so we've gone back onto Sandostatin for 12 months. Look, that's not working, so about 2015. Um I'm like, well, what are we going to do now? Uh we'll keep we'll monitor it. I love this whole thing, you know, we'll keep doing tests and we'll keep monitoring what you expect to change. It's like I I said to my wife one time, I said, but this the end of I've got, she's a lovely lady, but she just doesn't have my sense of humour. Um I'm I I'm the sort of person, the worse it is, the funnier I get, personally. I think I'm funny anyway.
SPEAKER_01:Yeah, I understand that.
SPEAKER_00:And I'm like, you know, well, it's it's not like milk. It's a bit like milk. I said, you know, if you take milk out of the fridge and it's off, putting it back in the fridge and waiting to see if it gets better isn't going to work.
SPEAKER_01:No.
SPEAKER_00:I said, what do you expect's gonna happen here? Anyway, oh, we'll keep trying, we'll do the doses, increase the doses. So that kept building up, and we got to the point where I said, look, the second thing hasn't worked, uh, we need to do something else. And then so then she said, Well, um, you know, that we're sort of at our option end is is she goes, Well, there's really there's radiation, but she clearly didn't like it in the way she spoke. And I went, Well, yes, there is radiation. And I said, Why are we talking about it? And she goes, Oh, you know, well, you know, radiation, you know, it's you know, obviously have thoughts. And I went, Well, let's look at our options here. I've got four children, um, my health is not doing well, I've got a a family, I need to work, and um my body's starting to feel it. Your medication isn't working. At the time, our only front line in 2005 was Sandersatin in the medications in Australia. Yeah, and I said it's not working. So I said, Look like it's radiation. What do you reckon? So she ended up sending me. I went to a private radiation place in Melbourne, uh, Epworth, and I had the the high beam, high dosage in one spot type thing.
SPEAKER_02:Okay.
SPEAKER_00:Um scared about that. No, no, I mean, I I the the he was a great surgeon. This guy I loved, he was a really nice guy. Uh I walked in, he was an older gentleman, he was poached to come and set up this new machine they got in Melbourne. And um he was hilarious, you know, because he's he he walks in, he goes, uh, he goes, I'm the doctor of last resort. He goes, let me guess they you know he goes, let me guess your surgery hasn't worked. You've probably had a second one that hasn't worked, and you sound your drugs aren't working either, are they? I said, You know me well.
SPEAKER_01:But it's so important to have that good relationship, isn't it? Because it makes you feel so much more at ease. Uh and if there is a little bit of friction or or difference of opinion with your endo, it's it's it's hard.
SPEAKER_00:You've got to lighten the moments, and and and like I said to you, it's it's easy to get down. And I'm I'm this I'm the exact opposite. I I can I can I just go I go more silly, I'll say the most stupidest things. Uh usually quite shocking. You know, my I drive my wife crazy at times, and I embarrassed the hell out of a walk out and show, what the hell did you say that? Um it's funny, you know, like it's it's yeah.
SPEAKER_01:Humour is important.
SPEAKER_00:If I wasn't laughing, I'd be crying, you know what I mean? And so as far as I'm concerned, um, I'd tell you the story about um what I said to the Peter McNeil when he's when he said what I had, but uh it's probably a little bit rated uh go on, it's okay. It's okay, you can edit it out. All right. Um when I walked in there, Peter McNeil, when he said this is the surgery, he said, Oh, you mean you've got acromegally? And I went, Oh thanks. I said, What is it? And he goes, Well, acro means um extremities, megaly means large hands. And basically what it means is you've got no production of graph hormones, which means the external limbs grow large. I said, Is that why I've got such a big dick?
SPEAKER_01:What's so she she just raised her eyebrows and went, Oh no, you'll be hearing about that later on when you get in the car. Funnily enough, that's the question I always got asked when I told people I had this great hormone condition. It's like, oh, does it make you make your dick breeze? Unfortunately not.
SPEAKER_00:No, no, it's but I just but I was like, how do you say stuff like that? I said, because I'm walking in thinking I've got cancer, I'm gonna drop dead that's brain cancer. So when he said that, from some concern, it's like, oh yeah, whatever, that's beautiful, I'm I'm happy, you know. Like I said, all the things that all the things that have played in my mind up until that moment, that was that was like, yeah, that was the the the the nicest option for me to have gotten. Uh I A, I knew A, I knew why I was sick, um, and B, it was something that had a name.
SPEAKER_01:It's this, you know? Yeah, the name is important for a lot of people, and that's you know, that's the the diagnostic odyssey as it's known is is from the going from the beginning to having that name and knowing where you can go with it. Oh, so go on, sorry.
SPEAKER_00:A name gives you a name gives you something that you can attach to, and and before that you you don't know what it is. And so I think the grand unknown is vastly worse. And so, yeah, I mean, look, I'm sort of personal, give me a name and I can look it up and I can research it and I can do that. But if I don't know what I'm looking at, um, and so you know, I uh to me that was a great thing to have a name. Um, so anyway, I went and saw this radiation guy, he was wonderful, he was a really nice guy, had great sense of humour. Um, was I scared of radiation? No. Was I aware of the did they go did he go for all the risks? Yes, he did. Um, but I look at all the risks and I say, well, any medication I take is a risk. You know, every medication has side effects. Uh any surgery is a risk, you know. Um, I I went one time, I had five surgeries in a year, you know, like um just constant surgeries, you know, and and for different parts of my body that were causing trouble. Um and so it was it he was a great guy. And so was I scared of radiation? No, would I do it again? Yep.
SPEAKER_01:Did it work?
SPEAKER_00:Uh no. It's slow, radiation is slow, you know. So if you think about getting radiation in say 2015, 16, um, it takes time to take effect. And so um, did it stop the increase? Yes. So my GP, sorry, my Endo, she's like, see, it hasn't reduced your figures. And I said, Yeah, but if you were to plot the line as a line graph, it stopped it going up.
SPEAKER_01:Yeah.
SPEAKER_00:So as far as I'm concerned, that's more successful than your own sandosatin.
SPEAKER_01:Yeah.
SPEAKER_00:Um, and I typed sandosatin well, it just didn't seem to do much for me.
SPEAKER_01:Okay. And so did they then decide to put you on some new medication after that?
SPEAKER_00:We got access to two new medications in Australia um about three years ago. Um Pastriotide and um what's the other one? Uh Sandersatin and Signa Sumivert. So sorry, uh Signifor and Sumivert. So it's a pastriotide and the other one. Um and so I I started off with the uh signaphore, and my endo said, try this out. Um it's it's similar in the sense of how it works, like sandistan, but it's a newer version of it. She says it will make you diabetic. If I know you, you will become diabetic on this one. So best get yourself ready for that. Um, and so I did. I I I went on to the medication, went on to Sonovert, uh, sorry, Signifall, and um instantly became diabetic. And I had to change my diet and do all those sort of things. And um I I tolerated the medication fine. I didn't have any, like I didn't feel bad on the medication, I I was just diabetic. Um which meant you know, I know I love food, I love, you know, it's one of the one of my great pleasures in life is eating.
SPEAKER_02:Yeah, yeah.
SPEAKER_00:And so sit down and have to think, can I eat this meal? And you know, it was I hated it. Um but again, blood tests went through and sure enough, um, no improvement. It didn't have any effect on me.
SPEAKER_01:Um God, that must be very frustrating.
SPEAKER_00:It is, and is, and and I that's when I I think you may have gone to the same conference, New Orleans, New Orleans last year.
SPEAKER_02:Oh, I did, yeah.
SPEAKER_00:Yeah, I was at the same one too. And the reason I was there was just to see, well, you know, what's what else is there? Because I'm running out of options. Um, and so the other option was uh Sumervert, and Summervert obviously acts differently than Sandostaten and um Signifor. Um and so I was there and I'm looking at, well, that's my last option when I come back to Australia. That's my last option is to go onto that one daily injections and see how that goes. Uh and I was in America just to see, well, what are they doing? You know, how are they coping and and what are they doing? I think I came out of a out of there relieved that I was in Australia. Um they've got wonderful treatments and then and they've got, you know, and some really great specialists, but access to the system. The system is you know, to hit to hear that you have to become a guinea pig effectively uh to get access to medications for some people. I just thought, you know, look, that's that's wrong. Um, but at the same time, they've got wonderful, like the people they had talking were really good, and and and I learnt a lot actually. And it was nice to meet other patients, which I hadn't met in Melbourne. Um so that was wonderful. Uh so yeah, look, I I so when I came back to Australia, we we stayed on the um Signafor for a little while, and then I just said to the Endo, look, that's not working. It's it's I'm a diabetic, I'm unhappy. Um, let's move on. What's next? Let's go. So then we went on to Sumovert, and uh, I've been on Sumovert for two years now. Okay, and that's helping then it has had success. It's the first time I've gotten into normal range, so I'm actually in normal range. So um when I said I'm I'm resistant to medications, not all of them, some of it does work for me. It's a daily, so it's a daily chore to mix it up and and put it through.
SPEAKER_01:Okay.
SPEAKER_00:Um, but it does work.
SPEAKER_01:But it's worth it.
SPEAKER_00:Yeah, well, it is it is worth it. Um it's uh the only thing I found with some of it is I don't tolerate it as well. So I I defin I put on a huge amount of weight straight away. Like I put on 15 kilos, I think, within a month. But that's it's quite common, apparently.
SPEAKER_01:Okay, quite common.
SPEAKER_00:So watch out, guys, if you go into some of it, uh don't be surprised if you gain a lot of weight.
SPEAKER_01:And did you manage to shift the weight or is it is it only recently.
SPEAKER_00:So it's taken me about two years. Um but you know, again, I'm a very active person. I still cycle, you know, uh I can easily cycle 100 Ks in a week. Um and I seriously cycle, I don't just put her along and and I'm always active. I do karate, I I play squash, I you know, I do all the things I can do. I push my body a little bit hard, I think. But um, yeah, I I I was very hard to shift and it's seriously. It's it's just boils down to having to really modify my diet to much lower intake and calories. Um also I I get extreme fatigue uh with this one, which straight away, which I never had before, so I can get extremely fatigued on this. So I can get days where I just go, I've had enough.
SPEAKER_01:I'm done.
SPEAKER_00:Um I'm done. Yeah, I'm cooked. And I I don't have to do much that day. I can get out of bed basically and I'm cooked. I've had enough of the day. And um but but that's that's also it could be I'm I'm cortisone dependent now. Developed all the other side effects you get, you know. Um so I'm cortisone dependent. It could be my cortisone levels, it could be a range of reasons. Um so again, I'm reluctant to say it's a medication, I'm reluctant to say it's accramentally it it could be simply because I'm cortisone dependent and on that day my cortisone levels aren't good.
SPEAKER_01:And you have to allow yourself, you have to allow yourself to go through those phases. There's no I mean, especially I can understand if you're an active person and uh you you know you can't beat yourself up over it because you can't go out that day, or or you can't go and cycle when you had planned to. You've got to go with the flow of it, haven't you?
SPEAKER_00:Well, you you manage it, and and I think that's the key to this disease, what of it's becoming up to what, 18 years of actually knowing I've got it and having to deal with it and um close to. And um yeah, you you you've got to manage it. You've got to say to yourself, look, today is not a day for this. And and as much as I would like to do this today, I can't physically do it today. Um and like just recently I've I've had to quit karate and and I really enjoyed karate. Um but I got to a stage where you know I spoke to my sensei, and I'm when I got my brown belt, my sensei was crying because she knew how hard it was for me to do it. Um and she knew that I was physically punishing myself, you know, um, that I was, you know, she knew that the rest of the day I'd be wrecked. Um, but you know, you you say to yourself, look, I look I'm gonna go and do this today, but up the rest of the day I'm gonna do nothing. I'm just gonna relax. And you you do that, you manage it. You know, I I one person from one of the Acromigli people said to me one time, he goes, you take one step when you can forward. And and that's what I I think, yeah, that's right. You take one step ahead when you can.
SPEAKER_01:Okay, Paul. Well, you I mean, I think you've had a really fascinating journey and quite difficult one at times. Um, but you've obviously got this positive sheen that you've you you've applied to it. If you if someone was to come to you and say, I've just been diagnosed with that chromegany, what would what would be your words of wisdom?
SPEAKER_00:It's not a sentence. It's not a sentence. Don't don't let it become a sentence. Um it's it's something that you manage. And you know, as I said to you, I wouldn't wish it on my worst enemy, but at the same time, there, you know, it's not the worst thing in the world that can happen. Um, you know, if I would get good advice, I would say to someone, make sure you get multiple advice. Be careful not to um get too caught up in what people say. I think you need to. I often read website page, you know, the the the um Facebook pages and so forth, and you and you hear people behaving like doctors, but you you're not a doctor. And you know, get specialist advice, listen to your specialist. Um, be active, be an advocate, don't just sit back, you know, do go in there with knowledge about, you know, I'm gonna go and I'm gonna talk about this. And I feel this, I want to make sure that this is covered, and I'm gonna ask these questions. So be active in managing your disease, but listen to the experts. Um, and and don't let it be a sentence. Don't don't let it define who you are and define everything in your life. Um, it's just a part of your existence, and that you will you can you can manage it.
SPEAKER_01:Well, Paul, thank you for that. I think that's such a fantastic note to end on, and um very sage advice for anyone that's listening to this who's just recently been been diagnosed. Um, so I want to say thank you so much for sharing your story. Good luck with the continued treatment. Thank you, Dan. Um let's hope it doesn't dampen your sense of humour. I can't see that happening in any shape or form. No.
SPEAKER_00:Um thank you for the opportunity to talk about it too, Dan. It's it's one of those things like I I generally don't speak to people about it. A lot of people don't realize I have it. I don't I don't generally discuss it. I'm quite a quiet person on it, but I think it's sometimes um good messages need to get out, Dan, and it's nice to hear the stories, full stories.
SPEAKER_01:Yeah, absolutely. And and and and real stories. It's not about the numbers and the stats, it's about the experience and the emotions and the and the day-to-day living of it. And I think that's just as important as hearing specialists, you know, talk about the the the biology of it. So thank you for sharing so much. And it's been a it's been a long episode, but I think it's been a very worthwhile one. And I'm I'm not gonna cut your story. I will put I will put uh parental guidance advice on on the episode, but uh no, I'm I'm not gonna cut it. It's it's been fantastic. So, Paul, thank you so much.
SPEAKER_00:All the best to you, Dan. All the best to you and and um all the best to everyone else out there that's um it gets diagnosed. Um Thank you. Cheers.
SPEAKER_01:If you found Paul's story interesting, and how could you not, and you want to hear other Acrotales, head over to acrotales.com where you can find the ever expanding library of interviews. 16 now, amazing. And of course, you should subscribe to the podcast as well to receive immediate updates when the episodes get released via iTunes and Spotify and all your other favourite podcast providers. So it just uh remains for me to say thank you very much to Paul, and we'll see you next time for another recommendation.