AcroTales
AcroTales
Episode 21 - Natalie
In Episode 21 of AcroTales we meet Natalie who is based in Buckinghamshire in the UK.
Natalie's story is rather different in that she has elevate IGF-1, a micro adenoma yet her Oral Glucose Tolerance Test (OGTT) is in range - and therefore has not yet received an official diagnosis. So what's it like living with the symptoms of a condition yet not knowing whether you actually have that condition or not? Natalie outlines this unique situation whilst considering what the present - and future - holds.
Hello and welcome to AcroTales, a regular podcast that explores the fascinating world of Acromegaly. 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 21, and I'm really pleased to introduce Natalie from Buckinghamshire in the UK. Now Natalie is 43 and as of today has not actually had an official diagnosis for Acromegaly. So this is going to, I think, make for a really interesting episode. Natalie, welcome. Thanks for joining us.
SPEAKER_00:Hi Dan. Oh, it's lovely to be here.
SPEAKER_01:Awesome. Great to have you. So, yeah, uh, possibly the first episode we've done where you where I've got someone on the call that doesn't officially have acromegaly, but perhaps has a lot of the signs and the symptoms. So do you want to just talk us through your journey as to uh as to how you've gotten here?
SPEAKER_00:Yeah, so I looking back, I think even as a teenager, I I had hormone a lot of hormonal issues. Um, I have suffered from fatigue pretty much for as long as I can remember. Um, and then it got to about probably 2013, and I realized things I I just wasn't feeling myself, really was not feeling myself. So I started going to my GP. I've very fortunate my GP has always been incredible and realized that you know things weren't quite right. So uh we did lots of lots of blood tests, they were all fine. And then he agreed that things weren't right. So he then started sending me off to multiple different specialities. Um, I you know, one of the big issues I have always had is my joints. Even as a teenager, I can remember my joints just feeling horrendous. Um, stiffness, you know, like trying to get up off the floor. I'd have to have a table or something to help myself get up, which is, you know, that's ridiculous when you're in your 20s and 30s. No, it's not. It's not, it's not normal at all in your 20s and your 30s. Um, so my joints have always been a big issue. So I saw, you know, rheumatology, I saw neurology, because I've I've always had suffered from headaches and migraines. Um, I saw multiple, I mean, gosh, I remember when I was 30, I must have been 31 or 32, and it was suggested it could be early menopause. And I was like, oh my goodness, that was a little bit of a shock to the system. Um but again, you know, everything was covered, everyone was saying to me, no, not to deal to do with us, we'll send you back to your GP. And then in 20, I'm trying to think when it was, I think it must have been 2016. My GP did another blood test and my cortisol was slightly out. So I think it was clutching at straws. He said, I'll send you off to endocrinology. Well, why not?
SPEAKER_02:You've been everywhere else.
SPEAKER_00:Literally, it was like, you've been everywhere else, let's send you off to endocrinology. So I went off to them. Uh, they obviously ran all the bloods, and I then had an appointment in January 2017 at my local hospital and was told I had elevated IGF 1. And the word acromegli was then first mentioned to me. And I was, as everyone goes, I went, What? I was like, what's that for? Yeah. And I remember my thoughts were I was gonna, I thought I'm gonna go in and they're gonna say either adrenal fatigue, uh fibromyalgia, uh, which had been mentioned several times to me in the past by others. Um, and I think like some people at the beginning, I kept calling it, how should I pronounce it, acromyalgia? I was combining the two. And uh, so yeah, so when he mentioned acromegalia, I was a bit like, what's that? And he so he was an endocrinologist at my local hospital. Um he told me, I had to get him to spell the word out for me. He wrote it down on a piece of paper and I asked him a few questions. And I I wrote down, and I I was looking for the piece of paper the other day, actually, because I I saw it a few months ago, so I know I still have it here somewhere. And he'd said to me that only 5% of people with elevated IGF 1 have Acromegaly. So I went, 5%, I'm not even worrying about that. I was like, okay, I'll be it'll be another specialist, I'll be off too. Yeah. And literally I thought, you know, here we go, you know, it's fine. I'll be off. My GPU will send me off somewhere else potentially in the future. So I thought I'm not even gonna worry about it. But I'd got him to write uh write the word down for me. And because I'd um it was an early morning appointment, so just in case I'd fasted, just in case he wanted to do any further bloods, so I thought I really needed coffee. So I went and I went down to the cafeteria in the hospital, and it was quite busy because it was sort of probably about half past nine. So there was lots of patients, lots of visitors, got myself a coffee, got myself something to eat, sat down, and I thought, right, I need to look this up. So I thought, being as I'd had been through this multiple times, I'd always known you don't Google. What I had learned, and a friend of mine from years ago who was a GP, he said, if you need to go go on the NHS website. So go on the NHS website and look it up because you know you're not going to be reading a load of nonsense.
SPEAKER_01:Trusted source.
SPEAKER_00:Yeah, absolutely. So I sat there in the cafeteria, typed in NHS acromically, and my face just went like this. And the doctor, the endocrinologist, he hadn't mentioned tumour, he hadn't mentioned pituitary, he hadn't mentioned anything. And I think the fact that he said 5%, I just went, I'm not even worrying about that. It's fine, it'll be fine. You know, that's not gonna be for me, that's not gonna be me. Um and I just I literally had a meltdown in the cafeteria. Okay. I um wait to find out. Yeah, it was a bit of a shock. Um, and it also contradicted the 5% that he'd said, because it basically was saying an elevated IGF 1 is a very strong indication, or words to that effect, is a very strong indication of acromegoly. So, and he'd written down my numbers, so my range at the time, because obviously as your age goes up, your range changes slightly, but I do remember my range at that time, I think it was something like six to like 31 or something along those lines, and my IGF form was 51.
SPEAKER_01:Okay.
SPEAKER_00:Um, so it wasn't like one or two out, it was you know, it was quite it was quite a bit out. Not massively out, but it was it was yeah, it was definitely elevated. Um so I I had a chat with him uh a few days later. I I think I pretty much harassed his secretary because I wanted answers. Yeah, I wanted answers. Um and I by that point I had me the way I am with things like this, I need answers and I research like mad. So I basically read papers, I have tracked down within a few days. I found our Acromegaly support group. I was chatting to people like yourself and others in the group, and I realized very, very quickly if it if you have Acromegaly, you need to be with an Acromegaly specialist, not a I won't say general endocrinologist, because a lot of them might be dealing purely with diabetes. You know, they might not be treating acromegly patients.
SPEAKER_01:You need someone that's done the surgery, seen hundreds of patients.
SPEAKER_00:Yeah, absolutely. So one of my first questions to him was how many acromegly patients did he have? And he wouldn't give me an answer. He just said a few. And I was like, well, what do you mean by a few? Five? Because I didn't, I I mean, I obviously I didn't want to offend the guy. In my mind, I just kept thinking, I'm not gonna be one of your guinea pigs.
SPEAKER_01:No, no, and it's your health at the end of the day.
SPEAKER_00:I mean, you know, it yeah, a hundred percent. And from all the reading I'd been doing, I knew I needed I needed a good team. If this is the road uh the road I was gonna be going down, I needed a good team. Um, so I spoke to my GP again and I said, I don't have confidence in being a patient at my local hospital with their endocrinology team because I said I don't think they have the experience of working with Apromegaly patients. Um, and I said, I'm, you know, I need to go somewhere that's good. And he was totally on board with this, my GP was. So he then sent me to another hospital. Um, they then did the OGTT, and this is where things got a bit complicated because the OGTT, so the oral glucose tolerance test, that came back in range. So they then said it's not acromagly. They said you need to have elevated IGF 1 and elevated, um, sorry, you're out of range OGTT. So they said it's not Acromegly. Now all the research I had done, it pretty much said that if it's not Acromegaly, it's down to malnutrition or pregnancy. And there was a few other, there was a few other ones as well, and I thought, well, none of those apply to me. Um so we had I had an MRI, and that's we found um the adenoma.
SPEAKER_01:Right.
SPEAKER_00:So then I was like, okay, two out of three.
SPEAKER_01:Yeah, that's I mean the adenoma has got to be a pretty big indicator, I would have thought.
SPEAKER_00:Yeah, you know, and I was very fortunate, it was it was very, very tiny, it was two millimeters, but at the same time, my brain was going down the route of okay, two millimeters is tiny, but the pituitary is only ten millimeters, so it's 20% the size. So your mind that kind of plays a little bit on your mind, doesn't it?
SPEAKER_02:Yes.
SPEAKER_00:Um but they just kept saying to me, no, because you don't look like you have Acromegley, you haven't got facial changes, and your OGTT is fine, so it's not Acromegley. They were saying it's impossible. So again, I went back to my GP and I said, I'm still not happy. And he agreed with me. He was absolutely phenomenal, my GP was. Um, and he totally agreed with me. I uh been chatting with a lot of people in our support group, and I was like, please help me find the best endocrineist for Acromedley. And that's when Nikki was talked about, and I said to my GPA, that's who I want to go and see. So he then referred me up to Birmingham. Yeah, so he referred me up to Birmingham, which was life-changing for me because Nikki, again, we're in the same position, but she was curious to know more, and she said to me, We will we will keep monitoring you and we will keep this going. We're not going to just say to you goodbye, this is impossible.
SPEAKER_01:Yeah. When was that? When did you go and first see her?
SPEAKER_00:I first so actually you can probably help me out with this um because I should know the dates here. When was our Akronegley meetup in Birmingham? Was that 2018?
SPEAKER_01:I think. No, 2017.
SPEAKER_00:2017, okay. So I had first been up to see Nikki. I'd met Nikki a couple of months before that. And I then got because you'd uh um put out this amazing Acromegli meetup that you'd arranged, and I was a bit like imposter syndrome. I was like, oh, I don't, I don't think, I don't think I should go because I'm not I'm not officially Acromegli. I don't officially have Acromegaly diagnosis. Um and so I was a bit like, oh, I'm not sure, I'm not sure. And then the date for my MRI came through. I don't know if you remember this, the date for my MRI came through, and it was the same day as the meetup, and I just went, well, that's a sign. I'll I'll go. And uh so yeah, I came to the meetup, which was incredible because I got to meet um meet all of you, um, which was just phenomenal.
SPEAKER_01:And Nikki was there, wasn't she, I think?
SPEAKER_00:Yeah, Nikki was there, and yeah, so it was amazing hearing her talk, and obviously I you know I'd had my first consult with her. Um, so yeah, it was incredible. And then later on in the day I I left slightly early and I was like, I'm going upstairs for my MRI now. So uh yeah, that was uh it was a lovely coincidence that was. Oh so yeah, so that was 2017 then.
SPEAKER_01:Yeah, I might be wrong. It might have been 2019 or 2018, I can't quite remember.
SPEAKER_00:2019 was Manchester, I remember that one.
SPEAKER_01:Yes, okay.
SPEAKER_00:2019.
SPEAKER_01:I think 2018 was the first one then. Okay, so that was five years ago.
SPEAKER_00:Yeah.
SPEAKER_01:And I'm guessing you still don't have an answer.
SPEAKER_00:No, no, okay, it's it's still the same. But yeah, so my late my last MRI was I'd do another MRI this year. My last MRI, the tumour was stable, I guess. The adenoma had stayed the same size. My IGF one, um, so again, my GPs are phenomenal, and rather than having to go out to Birmingham purely for blood tests, my GPs do them for me. Um, so my IGF 1 has always stayed at um elevated. Nikki has been amazing because what she did initially is she with my blood, she sent them off to every single lab in the country just to see if it was a lab. And they all came back elevated. Um so yeah, and it's and one of my one of my biggest curiosities has always been, and I think this is what has has kept me going for looking for answers, is what I've always asked the question: what's the prevalence of somebody having IGF 1 elevated, an adenoma, and it not being acromegly?
SPEAKER_01:Yes.
SPEAKER_00:And I can't find an answer to that. And I asked Nikki that, and she was very, very honest with me. Um, she's like my guardian angel, Nikki is. She was very honest with me, and she said, That's a million-dollar question. We just don't know.
SPEAKER_01:No, and because it I mean, I'm guessing, as with all rare conditions, even if it's never happened before, it's not impossible that it's happened to you. And that's that's the difficulty for them, isn't it? Um so the tumour hasn't grown anymore?
SPEAKER_00:No, I think.
SPEAKER_01:Have you had so my previous MRIs since then?
SPEAKER_00:Yeah, so I've had um I think I've had three. I've had I think I've had three uh for the um for the uh on the pituitary. Um so I'm due, I'm fairly certain I'm due another one later this year. So we'll see where that one goes. So we'll see what that one shows. Um and then what I've got another blood later uh next month, and that will be testing IGF one and growth hormone. And we'll just we'll just see what that shows.
SPEAKER_01:Okay. And you're not uh and you're not on any medication then, I'm guessing.
SPEAKER_00:No, no. That was one question I did have years ago was could we do a trial of medication to see if it lowered my IGF 1? And you know, and I I fully understand the medication for Acromegly is extortionately expensive. Um, so I understand why the answer was no on the NHS for that. I I understand that. Um, and it's like Nikki has always said to me, at the moment, because the adenoma is so small, it's not causing an impact on my vision, it's not um, it's not pressing on anything, you know, like eucroted artery or you know, anything like that, it's not causing issues there yet. Um, and she said, you know, this could be a non-functioning pituitary tumor, and I I'm with her on that. It could be, and it could be that my IGF-1 is naturally high, but to me, the two of them together, it's just it's an uncomfortable coincidence.
SPEAKER_01:I guess so. I guess the big question is though, on a day-to-day basis, do you feel okay? I mean, do you can you lead a inverted, commas normal life? Uh I I appreciate the rheumatism and the joint pain is may still be an issue, but generally do you feel well?
SPEAKER_00:So that's a really interesting question because I a lot of it for me is up here. You know, it's the choices, it's the choices that we make and what we focus on.
SPEAKER_01:So just to those listening on the podcast, up here is in the head.
SPEAKER_00:Oh, yeah, sorry.
SPEAKER_01:I think we just mean to make that clear.
SPEAKER_00:Yeah. Um, so yeah, it it's interesting because I mean that the first the first couple of years of finding out about it, I went down a very, very dangerous emotional journey. I think is the is the only way of describing it. Um I don't feel going back to your question, I I know my energy levels are not right. Um, I do have to really watch my energy levels. I get really, really tired. And brain fog is gosh, brain fog some days can be horrendous. Um, my joints are are not great. You know, I've been seeing an osteopath for a while now, and um even he's like, I, you know, this is this is not quite normal in a nice way. Um so yeah, it's uh it's interesting. Nikki phrased it once to me, and I thought she's kind of hit the nail on the head. And she said, when you uh live a certain way, so you live with and it this could be relevant to anybody with any um any condition, uh like physical condition, when you've lived with it for so long, it becomes your normal. So you almost kind of forget what it would feel like if you didn't have that. So uh that's yeah, it was it was a really interesting perspective. It was um yeah, it was a really interesting perspective that was.
SPEAKER_01:And I guess those who live with chronic pain and you know, throughout their lives, it it just becomes a part of your normality, doesn't it? I I mean you know, this is this is not I can't compare apples with oranges, but you know, I have a permanently sore back, and uh I've tried all manner of treatments, and my lower lumbar is quite painful, and I've I think that might be a slight side effect of the acromegaly. But what can you do about it? And uh and you kind of have to resign yourself sometimes. You try and do everything you can to manage it, but to cure it is is uh is difficult. Yeah, and so yeah, there is a bit of resignation, I think, and then you just have to live your best life with what you've got.
SPEAKER_00:Totally, and and it's a choice, you know, it's um it's absolutely a choice for us, and this is one thing I realized in gosh, so probably 2018, 2019 were emotionally incredibly tough years for me because it was the unknown and it was so so scary, the unknown of because also we do hear, you know, elevated IgF one that's not treated, the internal damage that that can do is can be can be quite horrific. Um, you know, but like the heart at the internal organs, and that's that really scared me. That really, really scared me. And I know I've oh I had some emotional trauma from some previous surgeries that I've had that obviously not related in any way. Um, but I knew I had some emotional trauma from those. So the thought of at any point I could be told, yes, actually it is acromogly, and now we're going to be doing, you know, surgery to to remove this tumour, that that terrified me. That absolutely terrified me, that did, because I felt like I couldn't go, okay, it's happening in two months' time, I can spend two months preparing myself and then hopefully it will be done. It was a case, well, it could be now, it could be in a year's time. It was and I was terrified to make any plans.
SPEAKER_01:Yeah, I do get that. It's it's that sense of the unknown, isn't it? And um and also I think when you have an active brain, it that can be your worst enemy sometimes as well. Where it's it's you know, I think the phrase is doom forecasting, or you're just thinking too far ahead, and then you stop living the sort of you know your day-to-day life.
SPEAKER_00:Yeah, totally.
SPEAKER_01:And things are affecting you that actually you don't actually know if they will affect you or not.
SPEAKER_00:And yeah, it's very absolutely, yeah, it really is. And it was also for me, um, I kept going down the route of if the longer we leave this potentially, and I I understand where Nikki was coming from, where she was saying at the moment we don't want to do this, uh, do remove the tumour because it might be non-functioning and we could do more damage. You know, the risks, the risks of further damage are are there. So, unless we have to remove it, we're not going to. And I was on board with that. And also the thought of, I was like, phew, I get out of surgery. So, at that point, so I was on board with that. Um, yeah, but at the same time, it's like a it's a total balancing act because at the same time, my mind was going, okay, if we leave it and it gets bigger and it then causes damage, then where am I, where do I, where does that leave me?
SPEAKER_01:It's very, very difficult, isn't it?
unknown:Yeah.
SPEAKER_01:You know, do you leave something as it is because it's doing no damage at present? But who's to say it won't do that in the future? It I I think it's uh until you live with it, it's it's really hard to know. And um I guess it's just a perspective on life. Uh um and I think, you know, we were chatting about this beforehand. Um, you know, I think you've it would be fair to say you've been reticent to sort of share your experience uh in the past, but recently you feel that you're in a place where you can do that. What why what do you think has changed for you that means that you're here now telling your story on AcroTales?
SPEAKER_00:So I um it kind of started so right from the beginning, when obviously I heard all of your stories and everything that you guys were going through, and the medication, the treatments, the you know, radiotherapy, the surgeries, and all this, and it literally just broke me because I for you guys, because I thought the awareness is not out there. So obviously, we have Acromekley Awareness Day on November the 1st. So I um I love being creative. So I got on Canva and I designed this poster, and I just thought, you know what, I'm just gonna share it. And if it helps raise awareness in some way or other, then that's amazing. But then at the same time, I was like, okay, I need to have a cover story as to I need to have a little bit of a cover story here as to why I'm doing this, um, for sort of like people that know me. So I just was saying, you know, and it is true, I was saying, you know, some very close friends and some very lovely friends of mine have this condition and I want to do my part to raise awareness.
SPEAKER_01:So I've been sharing that post-without actually saying, and I might have this too.
SPEAKER_00:Yeah. So I was um oh gosh, I can't remember. I mean, gosh, I've been doing that post or maybe I should do a new one for us. I think that's great.
SPEAKER_01:And and just to say, we'll share that on the uh on the AcroTales website. So if people haven't seen it, they can go and have a look at it.
SPEAKER_00:Yeah, and it's I think I first did that in 2017, possibly, maybe 2018. Um, and then two years ago, so just going back a little bit bit more to your question, about 20 years ago, I started reading and hearing about NLP, so neurolinguistic programming. And I've always been really fascinated with it, really, really fascinated with it. And then with the, and it felt dangerous to me, the journey that I was going down. The mind.
SPEAKER_01:Could you maybe just give a very brief explanation of what NLP is for those listening that may not know?
SPEAKER_00:Yeah, so it's I I like to think of it the easiest way is is the way your brain is programmed at an unconscious level. So consciously you think about certain things, don't you? And you think, you know, oh, okay, I'm going to phone a friend, I'm going to do this, I'm going to do that. But we also have a level of unconscious activities that we do where we're totally unaware of it. We just do it, it just happens. Um, and it's the way that our brains are programmed. So from a neuro, everything up here in our brains that's happening, linguistic is our internal language, and then the programming is the way our we unconsciously have these programs built within our own minds and the own language that we use to ourselves. So, and if you can learn to speak a certain way to yourself, you can learn to speak another way to yourself, but you have to change it at an unconscious level.
SPEAKER_02:Okay, okay.
SPEAKER_00:So I knew from the little I knew about NLP, I knew that was an area I need, I wanted to, and I needed to investigate further. So I then uh nearly two years ago, I decided to do my practitioner and my coach certifications. So I did those predominantly for myself. Um, I'm also self-employed as a dog trainer, so I knew it would have an it would help me with my clients as well, and it has done, um, which is lovely. So it's lovely to be able to share that with them. But more so it's how it helped me, and it totally transformed the way my mind basically, the journey my mind went on, totally transformed it for me.
SPEAKER_01:So yeah. In terms of your in terms of your acknowledgement of this condition and the you know, the complexity of have I got it, have I not got it, all of the things that were around your head thinking about these things. Yeah, totally. That's controlled. Is that how you would see it?
SPEAKER_00:Yeah, absolutely. It was um I also was able to deal with the emotional trauma from past surgeries. So I now feel, you know, I'm not saying I'll I if if it if I get a diagnosis and I'm told I need surgery, I I won't be going into the hospital singing, but I will be in a much, much better headspace, 100%. And I feel calmer about it, I feel much calmer about it. Um, interestingly, I haven't seen Nikki since before the pandemic. We've had um phone consultations, uh, which has been fine. Um so it would be interesting to see if I were to have an in-person with her, can I actually sit in front of her and not cry my eyes out? That would be interesting.
SPEAKER_01:It sounds to me, Nat, like you've got that you're in a good place and an acceptance of what's going on. It's you know, in rare disease, we always talk about the diagnostic odyssey, and and that's the journey that you go on to get uh an answer to what is happening to you. And that can take years and years and years. I think on average it's six years. Um, and there's a lot of fighting and uh and a lot of being your own advocate, and I can't I can't really imagine the complexity of going on that journey and still not coming out with an answer, or there being a possible answer, you kind of know what it is, but the science can't prove it.
SPEAKER_00:Yeah, and that's it it's interesting because I I mean, obviously, I'm not a medical professional in any way. I have done an awful lot of research and reading on Acromegli. And because Acromegli, like you say, I mean, with six years, and we know from just chatting with so many people in our small community, so many people look back and they go, Oh, it was there 20 years ago, it was there 10 years ago. It takes so long for the majority of people to get diagnosed. So very rarely are people diagnosed in the early stages. It's so, so rare. And obviously, the the number one thing that I quite often get told by the medical professional in general. general is you don't look like you have acromegly. So because your growth hormone is currently in range, it's fine. You don't look like clinically you don't look like you have acromegly. So we can't be certain. And I'm like, well, my thoughts are is could I be in the very, very early stages? And we know it's for the majority of people it's very slow progressing. So my thoughts are okay, maybe in five, ten years' time it will be there.
SPEAKER_01:Yeah.
SPEAKER_00:And but then we also know through our community that the one wish that nearly every single person has is they wish they'd been diagnosed earlier.
SPEAKER_01:But I guess on the plus side you're prepared for it.
SPEAKER_00:Yes.
SPEAKER_01:You know it it it you know people wish they'd been diagnosed earlier but they would never have heard of Acromegaly.
SPEAKER_02:Yeah.
SPEAKER_01:So that you know that's um you know it's wonderful looking back in hindsight. Yes. But if you you know you can't you can't self-diagnose something that you don't know about. No I think you're in a and I think you're in a I'm not going to use the word privileged position but I guess you're in a unique position that you are so aware of this and so conscious of of this situation that if you start to notice a you know a a marked change or then you will be on it like Ron and you will be totally yeah yeah absolutely you know and it is it's interesting because I um you know one of the areas that I went down and in fact actually I started this before I went to endocrinology because I was just feeling so awful is I was like I what can I I need to help myself you know what can I do to help myself because at the moment the medical world is not able to help me.
SPEAKER_00:So things like I cut out refined sugar and that made a massive difference massive like the mind body connection you know I know that if I eat refined sugar the next day my body I feel like I can't move my body you know it's and then of course if your body feels like that up here in your mind you're it's it can be really hard to feel positive.
SPEAKER_01:You know if your body's feeling rubbish it's really hard to keep it and that's where we've got to be strong and and make the changes and improvements that we can in our in our day-to-day lives to just sort of help with sort of general existence and uh general day-to-day living but it it's hard for some people that's a real struggle and for others it's it's not too bad.
SPEAKER_00:Yeah it is totally and it's and it breaks my heart when you know within our community when I see people that are really really struggling and you just want to reach out and you just want to you want to wave a magic wand for them. You really do because you can see that I look at some of them and I at some people and I just think gosh they are 10 times in such a they're like 10 times worse emotionally than I think I was in 2018, 2019 and I know how bad that was and I just think I you just you just want to wrap them up and help them and it's so so hard and you know it it just breaks my heart for everybody. And again it's the awareness you know it's with so many other um you know medical conditions that aren't necessarily visible you know we know we know that's a big thing for a lot of people where you know you're not walking round with a big plaster cast on your leg. So people look at you and go what's the matter? You don't look XYZ it's really difficult.
SPEAKER_01:Yeah look Natalie it's been absolutely fascinating chatting through this and I know this has been a big thing for you to uh find the right time to do it. So uh I'm hugely grateful to for you telling your story. It's a it's uh it's a unique one because I know people listen back to these for advice and guidance maybe on Acromegaly. But I still think your approach and your and your positive outlook on this and your determination to try and find an answer in a world that can't give you an answer yet is really inspiring. So you know I am no person to give advice but I I would always say don't let this be what defines you. Yes 100% 100% put it on the back burner as much as you can and train your dogs and live your life and enjoy the weather and and don't let this be uh something that you know it casts a huge grey cloud over you. Yeah and as you said there are people in yeah and there are people in much more situations that do have to live with it and and and can still live a fulfilling and and enjoyable life.
SPEAKER_00:So yeah absolutely and I know when I look back at myself now from but if I compare myself now to say 2018 I I'm a different person. I'm a totally totally different person and you know whereas it used to consume nearly every waking minute of my life I probably sometimes go a couple of days without it really you know it's not in the forefront of my mind anymore. It's there I'm aware of it and I'm aware more aware of looking after myself yeah you know that's the main thing.
SPEAKER_01:Quite right and and I and I've always said this you know I some people go I'm not I'm not doing much advocacy recently it's like great you don't have to you know you're you're you'll go and live and and when you feel like you want to give back then do it. But you know it's um uh it's it's a it's a balance but yeah really really fascinating Nat so thank you so much for uh joining us on AcroTales and and sharing your story. Oh well thank you for having me Dan it was um it's been it's been nice it's um it feels right as well it feels it feels right now to sort of talk about it a bit more openly fantastic and if you found Natalie's story interesting and want to hear other acro tales head over to acrotales.com where you can find the ever expanding library of interviews and of course you can subscribe to the podcast to receive the latest updates go to iTunes Spotify wherever you get your podcasts thank you so much for listening and we'll see you next time for another Acro Tell