Episode Transcript
[00:00:04] Speaker A: Welcome to a Wonder Care podcast. This week I am doing something a little bit different. We are starting our living with miniseries, and the concept of this miniseries is to give a little bit of information and insight on people who are living with different either medical conditions, visible or in visible disabilities, or intellectual disabilities. Anything goes, really. So I decided to kick off this miniseries by throwing the highlight onto a condition that I live with myself, which is called ankyizing spondylitis. Now, I didn't want to bore you by just chatting away to myself, so I have introduced a fellow media contributor, and her name is Laura Erskin, and she is from the parenting experts. So welcome to the podcast, Laura.
[00:00:57] Speaker B: Thank you for having know. It's great to be here, considering I've listened to this since its inception. So I'm finally getting to take some of the reins here in terms of the mic. Thankfully, I'm not actually talking about my experience, and I get to put you into the hot seat, Gina.
[00:01:16] Speaker A: I know it's your time to shine, Laura, so be kind.
So, Laura, I think it's actually quite good that you know absolutely nothing about anky spontylitis. Don't know what it. You've heard me whinge about it on occasion. Is it something that you'd ever heard of out in the normal world?
[00:01:36] Speaker B: No.
[00:01:37] Speaker C: And I had to get you to tell me how to pronounce it. So, no, it is not a familiar condition to me at all. And I have heard you whinge about it on occasion. So I do know it's something to do with your back, maybe, and a little bit of back pain. Get pain standing. We did have a very nice chat about pre, your trip to Disneyland in Paris. I said, is there any condition that you or any of your family has that might get you a fast pass for queuing? And you said, actually, that condition that I have, that means that I can't stand for long periods. And that was actually, I think, the.
[00:02:17] Speaker B: First time that I.
[00:02:19] Speaker C: Because I knew you said something like about an autoimmune disease, but I never connected it in terms of actual physical pain anywhere. So, yeah, ankalizing spondylitis.
[00:02:30] Speaker A: Am I saying that right? And to make it easier for you for the rest of this episode, we can just call it as, look, I'm not going to control this podcast. I will be back in the lead of the microphone next week. But, yeah, what you want to know?
[00:02:45] Speaker B: Brilliant. Okay, well, first of all, please tell.
[00:02:47] Speaker C: Me what exactly is ankylizing spondylitis? Because it sounds fairly tropical.
[00:02:53] Speaker A: It does. But unfortunately, it's not half as exciting as it sounds. It is a form of autoimmune arthritis. So people will have heard of things like rheumatoid arthritis. They'll be familiar with that. And that it's an autoimmune disease. And basically that means that your body, its immune response, doesn't behave itself. It doesn't do what it's meant to do. So what I get is huge amounts of inflammation, and it is particularly bad for me in the spine, but for other people, it can affect other joints, but it is mostly. This one is mostly a spinal arthritis. It's like a lifelong degenerative disease, basically. So over time, some of the bones in the spine, your little vertebrae, confuse together, which obviously would not be ideal, and make you have a hunched posture. You can be really inflexible, and it can affect your breathing. Yeah, it's just unfortunately, as the inflammation happens, your body starts to try and heal itself. And the way it does that is by forming new bone parts. So the bone kind of gradually bridges the gaps between the vertebrae. And so that's how your vertebrae fuse together. Now, I will say that I am not at that stage. So all that I experience now is pain. So I would get a lot of pain in my lower back and also in my neck. So that is the biggest challenge that I have. And as you said there, I can't stand yet. I can run, so I can run a marathon, but I can't stand still. Like if I'm in a queue or if I'm just even at work in the pharmacy, I will really struggle to just stand for extended periods.
[00:04:32] Speaker C: That's very debilitating. How did you even discover this? Is this something that you've had all your life or something that you developed?
[00:04:41] Speaker A: It is a disease that starts to present itself when you are maybe a teenager or just in your. Basically, since I went through puberty, I've been going to various establishments, from chiropractors to physio to everything, because I always had this really weird pain in my back. And I suppose the most distinctive feature of it, which I noticed during my pregnancies and particularly after, because it definitely has gotten worse. So I'd go through periods where it was awful and I'd moan, my mom would bring me to an osteopath, or then I'd go to a physio or whatever. But actually, as I have gotten older, it became fairly constant. So I was attending the GP and eventually they sent me to a rheumatologist, and that is how I found out I had it. So they did a blood test and there is actually a gene that pretty much everyone who has ankyizing spondylitis will have this gene, and it's called hlab 27. But funnily, not everyone who has the gene will end up with this disease. So while everyone with the disease has the gene, not everyone with the gene will actually go on to get the disease. And I think I can pass it on to my kids. There's about a 10% chance that they'll get that gene, so hopefully they avoid that. Yeah. So it was really difficult and very prolonged over about 20 years of kind of chronic back pain. It became really obvious about eight years ago, luckily, after my pregnancies. So I actually feel really lucky that I had my children a little bit younger, maybe. I started having my kids when I was 29, which isn't really, I suppose, commonplace now, necessarily. And I'm really grateful for that because by the time I was 36, this was a really, really big problem for me. So I am very grateful that I have my three children and it's not something I have to think about now because I wouldn't be able to be pregnant and on the medication that I'm on now. So that's something that I am actually just really glad about now that I think about it.
[00:06:49] Speaker B: Yeah, I can imagine, because I don't even know how you coped with, I suppose, your condition during the pregnancy, because obviously you couldn't have taken medication, so it would have been extra hard. Did you find that your condition has gotten worse with age, or do you think pregnancy and the experience of pregnancy has worsened your condition?
[00:07:07] Speaker A: I actually think it's just age.
My three pregnancies were very close together. Like, I had my three kids. Like, the eldest was three and a half when I brought the youngest home. And pregnancy was fairly standard for me. I definitely went through periods of having no symptoms in my life up to that, and then times like a year or whatever where it would be really bad. So I think I got really lucky just with the timing of my pregnancies.
[00:07:35] Speaker B: And do you think that you will get your kids checked to see if they have the gene at all, or do you think that might freak them out a little bit?
[00:07:44] Speaker A: There's certain genes that, of course, are worth checking for, but I don't think it's worth checking for without them having any symptoms. So if they were at any stage to develop any symptoms, then absolutely I would get them checked and I'd get them referred to rheumatology if I could, but without any symptoms, a lot of people will carry that gene but not develop this condition. So I think I'm a positive person. I actually spend most of my life trying to forget I have this condition and ignoring it. So I would be optimistic until I was given cause not to be.
[00:08:23] Speaker B: Well, you certainly live your life like you don't have it in that.
Is this one of those conditions that does better with exercise? Like, you're a marathon runner and I tell you, I mean, I don't think I could walk 26k, never mind run it. And I have no such condition.
[00:08:39] Speaker A: 42K. Just going to say marathon.
[00:08:43] Speaker B: Sorry.
See, that's how little I know.
[00:08:46] Speaker A: Very sensitive.
Do you know what? I definitely find that if I go through periods of a lack of activity that my pain worsens. I'm not convinced or sure that running marathons is the best way forward for me. However, it's a risk that I feel I need to take because it really serves my mental health and energy and positivity really, really well. I love running, and my rheumatologist is like, well, you're doing okay. The medication that I'm on has been life changing. Like, actually life changing. I would have been someone who would have really struggled to exercise in the past, because one of the striking symptoms of this disease is that it doesn't actually get worse with exercise. It gets worse if you live a sedentary lifestyle, and it gets worse on rest. So, for example, if I went to bed right before I started my medication, if I went to bed, you would guarantee that I would wake up at 3456 in the morning trying to get comfortable and trying not to feel the pain. If I sit in the car for too long, I am writhing with lower back pain, and it's a really weird pain. So it's not an acute pain, and often you can block it out because it's like a dull radiating ache. But that actually has a really fatiguing effect on you. So you find, like, you're absolutely exhausted. And I did find that about two years ago, I had a really bad flare up. And incidentally, it was after I came off my medication, because my medication causes immunocompromise, and I ended up in the hospital with flu for nine days as a result of just being so immunocompromised and unable to fight the flu. And I was at that stage going, this is ridiculous. I can't put my kid's parent at risk. It was really for the kids perspective. I don't want to be immunocompromised anymore. Therefore, I won't take my medication. Like, really irrational decision as a pharmacist, but I suppose it was done trying to protect my kids. And as a result of that, I ended up spending six months not able to sleep. Like, really struggling with pain. I ended up on crazy high doses of oral steroids for a very prolonged period of time and just really, really unwell. And the poor rheumatologist was kind of laughing at me because when I had told her, no, I'm never taking those drugs again, she was like, okay, yeah, sure, Sheena. And then I rang back like four months later going, please give me the.
[00:11:25] Speaker B: Like. That's crazy. It's great that you've been able to find medication that works for you, because I know that's a challenge for a lot of arthritis sufferers. And steroids tends to be something that a lot of people depend on, and they have their own side effects as well as sometimes not even working, but they have significant side effects for your stomach and also bloating and all sorts of other sort of issues.
So these drugs that you're now on that actually do work and that you find are successful for you, can you take them long term? And is it just that your immune system is compromised while you take them? So you need to make sure that you stay well, you have to wear a mask when viruses are on the go. And is that why you got that terrible infection on your face that you shared with all of your wonder care?
[00:12:17] Speaker A: Thanks for bringing that up. Thank you.
[00:12:19] Speaker B: That skin condition thing.
[00:12:22] Speaker A: Yes, I bet you can't pronounce that either. Just going to say no, I'm just.
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[00:13:03] Speaker A: The medication has its pros and its cons. So, for example, my immune system is really heightened and too active when it comes to inflammation in my back naturally. So these medications reduce your immune system to, they regulate it to stop it from causing that awful inflammation that, for me, would result in effused spine if left going. So if I didn't take them, it would just be a life of fatigue and pain. And I suppose you're looking at a quality of life issue there also. Then there's other complications. For anklizing spondylitis, such as heart disease, you're at increased cardiovascular risk. So for me, the immunocompromise that they caused me, I've had to balance that, and the only way I could do that was by going through, I suppose, the impact of flu, which obviously frightened me quite a lot. And now, most recently, as you said there, because it was winter season and I was getting a sniffly nose, like half of the nation. For a normal person, that would just be an annoying dry nose. But for me, because I'm so immunocompromised, it meant that there was some little tiny tear or irritation or cut up my nose from just having a runny nose, and that allowed bacteria to develop into my face. So I got what is known as ericipolis, and unfortunately, with that skin infection, it is common for it to be recurrent, which means that it can come back. So I would have first got it six months ago, and I've had it three times since and within two weeks of each other almost. Luckily, now it seems to be at bay. I have to say that disease also ericipolis, like the fatigue that caused me. Like, I had to sleep for 2 hours in the middle of the day every day. I just tell the kids it's because I'm marathon training all the time. I'm really tired, and they're like, well, but you haven't been running in weeks. I'm like, yeah, still, the marathon training, exhausted, exhausted.
So it's a balance, but definitely, for me, I'll just have to keep judging that as I go along, whether the immunosuppressants are worth it or not. But I would be very slow to come off them now because of the level of fatigue and pain that I get when I'm not using them.
[00:15:30] Speaker B: I get that because it is. It's the quality of life thing.
It's quite a lot to actually take on mentally, even just figuring out what's the best situation here for me personally, for my kids.
And I guess you can do that when you can sort of say, okay, well, there's flu on the go and there's other things on the go. And, okay, I got that skin infection that was pretty awful, but it's not going to kill me, hopefully. But are there things out there? Like, could you get the COVID vaccine? Now I'm hearing measles are on the go. How do those things impact you?
[00:16:06] Speaker A: Okay, so they actually impact me a fair bit. But weirdly, I am a medical anomaly. I've never caught Covid. I don't understand how. So the COVID vaccine isn't a live vaccine either is the flu. So I've always gotten all of those vaccines that are available. And as an immunocompromised person, luckily I'm offered them regularly and I do definitely take any vaccine I can get. Measles. Well, this is where it gets a bit tricky. So measles vaccine, the mmor is a live vaccine and I can't receive any live vaccines. Now that would be all fine and well if I had received my childhood vaccines, but because I had an egg allergy as a child at the time, they believed that that was a reason not to get vaccinated. However, that advice has since changed and you should get vaccinated if you have an egg allergy. But because I never got it as a child, and because I can't get it now, I would be quite at risk for measles. When things like this crop up as they are more and more. After Covid and the pandemic and infectious diseases are really been given an opportunity to circulate on a more wide basis, then that is a concern to me. Bosch. My children are vaccinated. My husband is vaccinated. That helps. But obviously, if I get on a bus where there was someone who wasn't vaccinated and had measles, then the likelihood is I'd catch measles. So yeah, I have to judge these things as they come. But it's not as simple as just not taking your injection. I take my injection once every two weeks. But if I stop that, it takes about five months for the immunosuppressant effect to wear off. So if I'm concerned about measles now, or any disease that comes into circulation now, it would still take me five months to be not immunocompromised. And in that time, I would be unhealthy because I would be fatigued and I would be in pain and I wouldn't be able to run. I'd probably start eating crap, bad diet. All of these things that happen when you're just experiencing chronic disease, like it's just really hard to live with. And so I suppose for me personally, I think that the best thing I can do is keep running, eating well, enjoying life, and taking caution where I can. And the irony of it all is that I started this measles Mmor vaccination campaign through my podcast and through my instagram at Wondercare underscore IRL, I started all of that campaign without even knowing that I wasn't vaccinated for measles. And we were laughing here, myself and my husband going, the irony, like, the absolute irony that you're the one person who's going around telling everyone to make sure that they're vaccinated to protect the immunocompromised, but not actually realizing that I was talking about myself. That's gas.
[00:19:04] Speaker B: And did your mom not realize, is it just that she had so many children she couldn't remember?
Yes.
[00:19:11] Speaker A: I'm the youngest of four, so I have three older brothers. And look, I had no diseases when I was younger, but I did have an awful lot of allergies and really severe eczema. And so at the time, she made the choice. But then, as she said, and she said to me, oh, my God, I really should have written that down. And I was like, mom, I haven't written anything down about my children's vaccines. I think it's really normal and really human to just miss something at the time and forget to come back to it. And I'm a community pharmacist. You rarely look at yourself and analyze the risk that may come in your life. And I think that's all that happened. And poor woman, like, she's the best mother in the world. And I was like, that could happen easily. That's why I'm really urging people to, I suppose, check with their GP and ring their local immunizations office if they don't have a record of vaccine. Because then, you know, and that's exactly what I had to do. Because mom actually thought at some point I had gone and gotten vaccinated. And she probably told me, too, as a young adult, and I probably just went, ah, yeah, I'll do that someday, and didn't. So I suppose she kind of thought I was vaccinated, and so did I. And it was only when I really went digging that I found out, no, I wasn't.
[00:20:31] Speaker B: And it's too late now, obviously, you can't get it. Is there any other alternative for you?
I know we're kind of gone down a little bit of a measles rabbit hole here, but what if that you were to come in contact with it, you are immunocompromised. You are not vaccinated.
[00:20:50] Speaker A: So what happens there is, and this is what's really good for immunocompromised people to know, because obviously it's something I've been thinking about a lot is that there is an option to go and get antibodies. If you know, and you see the problem with this is it's only if you know, if you've been in contact with a confirmed case. Was it two weeks ago that poor man died from measles? And his information from his travel between Mullingar and Dublin was publicized by public health teams. And so the same thing, I suppose, will happen if there are other outbreaks. People will be notified that disease happened in certain areas and maybe where that person might have been contagious. So if I know that I have been in contact with a suspected case, then I will be able to get antibodies. It is tricky, but I am trying to reassure people by saying, if you have any suspicion that you have been in contact with a measles case, then do contact your GP as quick as you can, because there are antibodies that you can receive which will help your immune system to fight the disease. You have to deal in risk when you're immunocompromised as well. So, yes, I might catch measles, and yes, I'm immunocompromised, so obviously I'm at increased risk of complications. But the fact of the matter is that, say, case fatality, people dying from measles, it's one to three per thousand people. So that basically means that 997 people won't die from measles. Now, there's a lot of other statistics, but life is a balance, and you just have to try and evaluate risk as best you can.
[00:22:28] Speaker B: Yeah. And live your life, and that's important.
Have you actually looked at alternative therapy? Because I know you're a big believer in the benefits of salt therapy for respiratory issues and allergies, and that's worked really well for you and your family personally, as well as having seen it work with your patients. But is there alternatives out there? Is this being researched further, even for more advanced, even medical treatment? Kind of what's the outlook for this disease? Or is it so unusual that it's not yet hit the research budgets for the big medical pharma companies?
[00:23:09] Speaker A: The thing is that I have actually traveled that journey already. And so your first line treatment is things like plateaus and physical therapy.
And I cannot state the difference that that makes. There is not a morning or a night that I do not get myself into child's pose, or now I call it angry cat, happy cat yoga pose. I'm pretty sure that's not what it's called, but that's what my children call it. Those two particular yoga poses are just like they can make the difference between waking up at night and not. So there's those. There's lots of medication that you can take that are disease modifying. So these are oral tablets. Now, I have tried them, and while they're quite effective for people who have rheumatoid arthritis, which tends to affect joints that aren't your spine, unfortunately, they don't really work with spinal arthritis. And so from there, I have obviously tried one form of injection, which was called tnf alpha blocker, and that was the one that landed me in hospital with flu. And now I'm on a different type of biologic immunosuppressing medication called cassentex. And that is working for me quite well at the moment. And I would like to say that I'm not immunocompromised, but the rash on my face over the last few months would definitely disagree with me. I think with anything. We have really amazing medication, and these medications have been shown to slow the progression of disease and also being active. So if you feel like. I think this is important, if you feel like you're suffering with a lot of kind of radiating back pain that gets worse on rest, that is the key difference here. And I suppose that probably explains my love of marathon training. If you suffer from that, definitely it's worth incorporating something like yoga or pilates into your day. And for years, I fought against that because I want to run and do nothing else, but it has made a huge difference to my pain levels. So there is that, and I do that in addition to the meds. But unfortunately for me, I've traveled the journey through the different types of medications and ended up here at the top spot. And I think there isn't an issue with taking them long term. It's just that they may not continue to work. You may need to change type, like I may need to go back to the other kind that I was on previously. It's about trial and error and seeing which one works best for you. I have to just hope and presume it'll keep working. I'm sure at one point it won't, and I'll go back to the rheumatologist and we'll address that then. But as you said earlier, you really do just have to continue to live your life. And when you have three young kids who are so good at understanding, if you are unwell and that you are fatigued, you just want to do your best by them.
[00:26:10] Speaker B: And it's a good message for the kids, I guess, as well. Seeing you so active.
That's really good. Unfortunately, some other people who live with chronic conditions, that forces them to have to be sedentary because of their condition. At least with your particular condition, it does better with activity, and that's a good thing for your kids to see you being active and join in, hopefully.
Do you know anyone else with this condition? I know you say your family are supportive, and I suppose it helps that your husband is a pharmacist, so they've all got that nice medical background, and you're a third generation pharmacist, so all your extended family are medical, so they can sympathize, empathize with your situation. But do you find ever that you want to talk to somebody else?
Is Arthritis Ireland the place to go, or are there other more specialized charities or support groups set up for this condition?
[00:27:04] Speaker A: You know what? The thing that strikes me there is, yes, I have a lot of people with medical knowledge around me, and I'm sure a lot of people with chronic disease feel like this. You're afraid of boring people by talking about your condition. Like if you catch the flu or something, you can moan about that and people will tolerate that because that'll be gone in a week. But with a condition that's going to be with you for life, you end up not talking about it to some of your family because you're like, I'm really pushing the sympathy boat here as far as I can go. I think it's really good to talk to other people who have it for me.
I maybe take advantage of my position in the pharmacy because I have a few patients who also have ankyizing spondylitis. And our chats on the counter at the pharmacy are definitely all about our conditions, it's definitely good to talk to other people who have the conditions. These are the people who aren't going to get bored of hearing you moan and will be empathetic because it is very hard for anyone who does not have a chronic illness to understand what that's like. The other thing is, yes, arthritis Ireland are a really good resource. A lot of people might benefit from reaching out to arthritis Ireland, and they are definitely the people to talk to about this.
You know, some people might find counseling helpful, especially people who are actually physically disabled, because it's all fine. And, well, me saying, do you know what you should do? You should go run a marathon. If someone told me that when I was not on my medication and I was really unwell and I was in the throes of pain and I was struggling to walk or stand or work, you're not going to appreciate that. You're going to find it really offensive. So I think it's just everyone being conscious of where they're at with their disease. It's very personal and seeking help when it's appropriate and where needed.
[00:28:57] Speaker B: And so what's the outlook then for you? So you're obviously doing everything right now. You've tried going off the medication, you know, that doesn't work. You're going to keep going and maybe adapt and stay in touch with your rheumatologist. What's the outlook for you long term?
Is that something where you're just going to keep staying active for as long as possible until this, I suppose, has more of a debilitating, degenerative effect and just deal with that as and when.
[00:29:25] Speaker A: By being active with this disease, there's no guarantee that you'll end up with a disability. So by being active, and it's actually really good motivation to be active. By being active, you can help to slow the disease progression and different people will suffer from different severity of disease. So you don't know what's in the future. So I think you have to live your best life in the moment and enjoy it as much as you can. As you can. Because you could worry about being disabled when you're 60, but you could look at having cancer when you're 50. So that's the way I live my life. I live my life for this day and this week, and that's about as far as I go when it's my health. I have learned to be kinder to myself. So if I feel tired, look, Laura, you know me and I'm someone who likes to tick things off lists. I like to be busy. I'm very goal driven and I find it really difficult when I'm not performing well in my own little head. And that is something that I have learned to adapt around a little bit and go, do you know what? Today is a two hour nap day. And that is all I can do. People will have their own way, I suppose, of managing it. One thing I have to be aware of is my risk of osteoporosis. So that is higher when you have as and spinal fractures. So again, doing everything I can, like pilates, et cetera, and even trying to build muscle at this time of my life is a good idea because that helps to protect your bones as well. And this is the same for any woman who's coming into their perimenopausal era. Women over 40 really do start to lose muscle mass, and you need muscle mass to keep your bones strong. So that's something that I am aware of, not that I do enough about it. And then you have a risk, as I said, a cardiovascular disease. So I suppose these are things you can control. So you can not smoke, you can make sure you're not overweight, and you can exercise a lot. There is a lot you can do. Some people, though, will get more complications, like they will suffer with their eyes. There's a condition called uvitis or irisitis, and this can cause really bad. Like, it can just happen really quickly. So that's something I watch out for. So you can get a lot of redness and irritation in one eye. And because of your condition, it can cause blindness if you don't get to the doctor really quickly. So again, you just need to know about these things and then forget about them. Same with inflammatory bowel disease. That would be linked with this autoimmune disease as well. It's not something I currently suffer with, so I'm not worrying about it, but I know that it's a risk. I live by the ethos that medical information is power, and you can choose to know the information and live sensibly thereafter, or you can choose to stick your head in the sand. So I suppose I do a bit of both. I take in all the information, but I don't carry it with me like I know it. I forget about it until I need to address it at the time. I try and live a healthy life, and I think getting to a point where you can do that should be the goal for people with as.
[00:32:46] Speaker B: Yeah, I suppose. And anybody who's living with a chronic disease, I trust you. Take your calcium and your vitamin D tablets, and you're like saying, yeah, are you like the cobbler and the cobbler's children, where you are preaching all of this great advice and, you know, the information, but you're not doing it.
[00:33:08] Speaker A: We're actually all really good at that.
I'm actually surprised at how responsible I'm sounding in this interview.
[00:33:15] Speaker B: And have you found any benefits to having that? Thinking, you know, you got the disability pass for Disney. Anybody who's listening, if you have a chronic condition that prevents you from know, this is something know, you might save a lot of time over.
[00:33:31] Speaker A: I really struggle with that, and I did do that on that. I really, I felt okay about it because it wasn't that we skipped the queue, it was just that we got a time to come back so we didn't have to stand in the one position. So we did queue, but we just didn't have to stand in one place to queue. And I am a person who is just generally mortified if any fuss is made of me in life at all. And so I really struggle, especially. And this is one of the funny things. I feel like people will never understand that I can't stand, but I can run marathons, do you know what I mean?
[00:34:08] Speaker B: It's counterintuitive.
[00:34:09] Speaker A: Completely. It is. And I feel ashamed of that. Almost like I feel guilty. I feel like no one will believe me, so I really don't talk about it.
[00:34:20] Speaker B: Are you now sort of planning ahead in terms of what you're going to do to stay active? Will you be running marathons forever or have you like, no, golf is next on my list, or tennis or what are you going to do to stay active?
[00:34:36] Speaker A: Well, right into your obsessed with running. And I feel like I am a very average, average runner. So in my age group, I'm always middle of the pack. Laura, I have figured out if I stay at this and I get into the 80 plus category, right, I figure I can do really well in that age group category.
I might win a prize if I just keep running for years and years and years, like the other people will be dwindling out of the pile and all of a sudden I might be the best 80 or 90 year old taken part. Who knows? At the moment I've got this really nice set up where two of my brothers and one of my very good friends, we are just targeting one or two marathons a year. And to make it fun, we're doing one abroad and one in Ireland. So this year for me, I am doing Paris on the 7 April and then I am doing Longford Marathon. The others are doing Dublin Marathon, but one of my children has a more important trip. So I have had to change from Dublin to Longford. And I'm quite excited about that. Other than that, I do triathlon a little bit, not very well, mostly because all I do in training is run. So I pretty much paddle in a river and jump on a bike, do that badly, but then I get to run at the end of it. And that is because I have a lovely triathlon club. So I'd really say to people like, you don't have to be good at things to take part in them. That's really important. Running is for everyone. And while I have built up a lot of endurance and I'm now marathon training, that can feel exactly the same for someone who is building up to a five k. And I've been at that level, too, where I couldn't run around a pitch. And so, yeah, Laura, look, hopefully I'll have a lot more news for you soon about my passion for running, but I'm going to have to keep that top secret for now.
[00:36:33] Speaker B: Okay, well, I look forward to that, considering I can't run. So maybe I'll be inspired by my able body and trying to get it moving, considering I have no such condition and could not run around a park. Well, that was really interesting, Sheena.
I'm glad I know more about this condition. Obviously, it's something that's out there that's quite prevalent. If you're telling me the people in your pharmacy have it. I was just doing a quick google there while we were chatting, and I believe it's one in 1000 people have it. So that's not really rare by any stretch.
[00:37:07] Speaker A: And you know what? And this is important. This is one of these diseases that's invisible. So you can have someone with a disability that you can see, and people will be really patient and tolerant to that person, but you can have a disability that you're wearing on the inside that no one can see, and people will maybe just not give you any credit for going about your day with that. And people with invisible disabilities often feel really hard done by. And not everyone has a platform like I do to raise awareness. So I think the whole point of this miniseries is to just get a better understanding of what's going on in people's lives around us that we can see or not see, and to understand the challenges they face. And I'm so looking forward to talking to some of my future guests. I have some amazing guests coming on to this, living with really significant challenges, and mine will pale into significance, and I'll just keep trying to run and keep well. But I think we'll all draw inspiration from the upcoming episodes that we have.
[00:38:21] Speaker B: So what would you say, then, to people who maybe have a condition that they'd like to maybe raise awareness of or know somebody? How do they get in touch?
[00:38:29] Speaker A: I see myself and my job having changed from just being a health information resource to becoming a patient advocate. And so I am always happy to help someone talk about and raise awareness about something they're living with. There is no definition of something that is hard to live with. The whole point of this series is understanding, maybe not so well understood conditions, and even conditions we know a lot about. We don't always ask people how they manage them on a day to day basis and how it impacts their life. So if anyone wants to come on and talk about any condition that they are living with, I would absolutely love to talk to them and help them to raise awareness about that so they can just send me a private message through Instagram at IRL.
[00:39:18] Speaker B: Sheena, it's so nice to learn all about that condition as ankyizing spondylitis. Did I get it right?
[00:39:25] Speaker A: You did.
[00:39:26] Speaker B: It's just rolling off the tongue now. Thanks for opening up, because I know that's not something that's natural for you. I know you're always fighting other people's fights and fighting against the health system and as you say, a big patient advocate. So it's nice to hear your story, too.
[00:39:40] Speaker A: Well, thank you for helping me tell it, Laura. You're a natural.
