Welcome back to Slice of Pie, where we explore the complexities of living with primary immune deficiency. I am really excited for today's episode, which explores self care in all the complexities of that word. I am happy to be joined by Nicole. Hello, Nicole. Hi. I thank you for joining the podcast. I'm really excited to hear about your experiences with health care. I'm wondering before we get into that, though, could you briefly tell us about yourself? All right. I'm Nicole. I'm thirty one.
I live in Langley, B.C., and I am a X-ray and mammography technologies. So I work in the health care field. I have two dogs, one big one little. So they run our lives. And I have been diagnosed with since I was 19. So about 12 years now that's that's earlier than then. Often what I hear. Yeah. Yeah. Is I was really lucky to be diagnosed really quick. It usually takes quite a few years for some people to get that diagnosis.
But being in health care kind of helped me out a little bit with getting through. So yeah. Mhm. And actually I wanted to follow up. You said you were X-ray mammography technician. I'm wondering what drew you to that career in particular. So weirdly enough, in high school grade 10 11, I started thinking about what I wanted to do after school and I always knew I wanted to do something to help people, but kind of wasn't sure.
My lovely mom went on line and one day gave me three different jobs that she thought that I would like doing and she knows me well. So one of these jobs was medical radiation technology, which is that I did I did a work experience program through high school and grade 11, convinced a local X-ray clinic to let me volunteer there as part of my program, ended up absolutely loving it and applying for the program and getting in straight out of high school and weirdly enough, full circle.
That is where I work now. So it was very meant to be. But yeah, I, I love everything about my profession and have loved it since the first day. I was kind of exposed to it. It you say it's a weird chance, I suspect, that you worked hard for it and. Yes, yeah, yeah. It wasn't a lot of hard work went into it, but it's kind of hard to come full circle. And what is fun about your your job. Oh boy. I can talk forever about my profession and specifically I specialize in breast imaging.
So I do a screening and diagnostic mammography and I do a lot of volunteering around that too. And I think that what we do is so important and I feel so lucky to get to be in the position that I am to be able to be kind of that person to help people in the first line of their journey with breast cancer. We are literally the people that find it.
It is up to us to be the educator, to be taking people through what is a very comfortable, you know, having to undress in front of a stranger and be manipulated in very interesting ways, very scary for a lot of people. So to get an opportunity to gain people's trust, to be able to educate them and to be a part of their journey is amazing. And I find it so rewarding to say I love every day that I get to do it. And you spoke to your journey like being a part of a patient's journey.
I'm wondering what your journey as a patient has been like since diagnosis. Just kind of can you give us a brief overview of, like, your journey thus far? The past 12 years? It's been a roller coaster. I'm starting out. And I was very sick or I guess I've been sick for a very long time. But when I was at my absolute worst was actually when I was finishing up my degree and I was in my final practicum stages, I was a vegetable at times, sometimes sleeping in immerge.
Up to five years and antibiotics and everything, just so that I can make it through the next day. It was a lot of having to fight for myself and or I should say my mom fighting for me because I didn't have the strength to do it for myself. I'm very thankful for her, but kind of had a beginning to convince people that I was sick and something was wrong.
And like I said, I was really lucky that I had a doctor who said, you know, I'm going to test you for every weird thing that I learned in medical school, because at the beginning they thought maybe you have lupus, maybe you have like muscular things, something auto immune is going on. But nothing was really coming back. And he was just like, I'm going to test you for every weird thing that I know. And of course, this came up.
And so rather than just jumping in and getting my infusions and getting going, I really had to prove that I deserved it, which took a lot of proving that I was sick enough and I didn't fall into the norm, which we now know people with PPI, we all have a different struggle and we all present in different ways.
So it's not like, OK, you're going to have strep throat, you're going to have issues with your kidneys, you're going to have got issues, you're going to have joint issues like there's no recipe for. PowerSecure, yes. So I didn't particularly fall into the right category, but thankfully we had some convincing the doctor to allow me to start infusions. Since then, my fusion journey has been quite interesting.
I did do it for six to eight months and got really severe aseptic meningitis and have had some kind of allergic reactions a couple of times. So it was a bit of a mess they released. I was really likely to have a super supportive infusion nurse who went over and above for me and I was one of the first to start doing subcu, so I would have been 20 when I started since you. So it's been a while. And again, that's been a journey as well.
I've tried every single subcu product possible in the last year. Knock on wood. It's been OK, but I still get some casual aseptic meningitis here and there. I don't want to interrupt you, but I'm not sure I would use the term casual Friday. But at the same time, it's very real. Like I understand where you're coming if you know. I mean, in the big scheme of things, I was really sick at the beginning and it kind of blocked that out.
And so I'm really grateful that I have my mom and my family and my dad and everybody with me that they can remind me of how bad it was so that when I say I just get casualties of meningitis, it's like, OK, in the big scheme of things, that's OK. We got like a week or two of being brutally sick in the hospital over like physically being unable for and to walk and just to be in so much pain, not able to work by that. So in the big scheme of things, the the benefits to pay.
Yeah. Yeah. So and I think like improvement looks different for everyone. Right. Yeah. I wonder just as a way to tie up those two elements, I wonder, like do you think that your experience as a patient informs how you work as a health care technician or a technologist. Thank you. A hundred percent. Yes, I feel that I do understand what it is like to be on the other side.
So to be scared, to be nervous, to be uncomfortable, to be in a room with a stranger, to be not able to get answers to questions that you needed or to not be able to have someone to educate you in the way that you need to be.
I, in my profession, go out of my way to stay educated, to always be doing courses, to always be asking questions, to be involved as much as I can so that I can be that person that when someone says, like, I just I need someone to answer this question for me, I can or I can least guide them in a way I can be a voice and I can also be an ear. I also know as a patient that sometimes you just want someone to listen to you.
So I think it has made me a lot more empathetic and has really allowed me to. Yeah, it'd be a lot better at what I do because I do understand what it's like on the other side. So yeah. Yeah. And there is a power to being believed and it sounds like something it is not, even though that is something that should have been offered to you. It sounds like something that you had to fight for. So it's even more it perhaps is more valued for you as well in providing that to patients.
So turning towards self care and your experience with self care, I want to note before we get into discussing your experience that self care is a deeply layered and complex thing. It is culturally bound. It is class bound. It is it is nuanced. And and in some ways, for example, someone pointed out to me that from their perspective, self care is not something that is experienced on the individual level. It is something that is a community level kind of thing.
And I want to welcome all of that complexity into our conversation. And also acknowledge that this is your experience with health care, with that, I'm wondering, what does health care mean to you? So I guess to me pretty simply is whatever you need to kind of fill your cup, which I know for us is refill your spoon. But really, whatever you need to do to take a step back, have that moment and and feel yourself back up. You mentioned spoons. Could you tell me a little bit more?
I think I know what you're saying, but tell me more about what? So this was something that I learned kind of early on in my diagnosis and really helped me quite a bit in understanding and managing myself, saying that each of us has kind of how many how many spoons per day. So let's say we have 10 cents per day and each activity and everything that we do take so many spoons. So when you're kind of going to your day, you're going to have a shower. It might take me one spoon. It might take you two.
You might not choose to shower that day because you have another activity that takes you for so kind of managing your day, looking at how many spoons you have, how many are all your activities or your interactions going to take from you and what are you going to be left with at the end of the day? And I know for me, when I first started, I would use a thousand spoons in a day when I had ten of.
So kind of when I was explained a little bit about what this was, it really helps me to kind of break things down and be like, yeah, it does. It does actually take me quite a bit to to have a shower or to walk to wherever or go to an exercise class. So kind of looking at your day and more so managing what you're capable of in that time and for you, does does it always take the same amount of spoons to go to a gym or an exercise class? No, definitely not.
And it's definitely been waves throughout the year. I personally am someone who has accepted that I can't exercise it. It takes too much for me to do at this moment in time. So I've had to kind of manage myself in different ways. But I've had times where, like literally having a shower that that's it for the day, you know, kind of in the lowest point.
And I've had other times where I can be superwoman for the day and do five million things and work a 12 hour shift and still come home at my house and walk the dog. And so it definitely comes in waves and kind of being more in tune with which kind of which which way you're in at that time. Uh, and how like can you can you predict where like what the next day is like or is it day to day like how, how do you manage your spoon. Allotment is taking me a really long time.
I, I mean with, with health care to like and this topic I was really excited. You want to talk about it because this is something that I have struggled with a lot and it has taken me a really long time to understand my body, understand when my body trying to tell me things and understand my limits and kind of acknowledging that my limits are going to change.
So. Usually day to day, I'm pretty good, but I've kind of had to set my schedule up with my infusions, knowing that I am prone to getting aseptic meningitis venom, sometimes I have a really rough 12 to twenty four hours. So usually I do my infusion, I work, I have the next morning off and I'm really grateful.
My work's kind of been really flexible that one day a week I have a morning off and that's why I recharge mornings so I can get through the week and just recognizing that know the telltale signs of when your body's telling you to slow down. So like fingers or when my immune system's coming down, I get migraines, I get joint pain. And when that happens, rather than pushing through it. Taking a step back and allowing myself to just, you know, replenish them. It is something I also struggle with.
I definitely do as well. I'm wondering, how do you navigate the, like, emotional mental complications? Because you keep talking about stepping back from it. Sounds like things you want to do. And I'm wondering, like, how do you navigate that struggle when in my early to mid twenties, it was probably the hardest for me. Those are times when people are traveling and they're active and they're dating and going out and staying out.
00 p.m. , I tried really hard to keep up and crashed and burned a lot. And it really took kind of a moment of what is my priority, what do I want my energy to go into and what is what is worth my time and energy. And it still is really, really hard when, well, less would cope and move out later. But life is basically my life.
But, you know, it's hard when all your girlfriends are going on a trip to Europe for a couple weeks and knowing that and that's not something that's in the cards for me physically and on the emotional side of that feeling left out or having to cancel plans with people who maybe don't fully understand that it's not because I'm being lazy. It's just I worked that day so I can't work and have plans after work in the same day. That's just not something that I can do.
So surrounding myself with people who understand that and support me and kind of making my little bubble of people a good bubble of people has been really helpful. I like how we use the computer system, but it is still is still a struggle. It is still hard on the emotional side to to just know that I can't do everything and I can't be everywhere. And I have limits that other people don't have to deal with. It sucks. It hurts. So much of what you said resonated with me.
But it also sounds like for you this like self acceptance is a type of health care. Yeah. Yeah, it was it something that you came to easily or do you think now? Yeah, I am. I am definitely a person who who does it all, who doesn't stop, who goes over and above everyone and everything myself and I put everything I have and everyone and I have a very, very, very hard time saying no. And over the last I'd say especially probably two or three years has been a lot of growth in that area for me.
And really realizing of, like I said, what what is most important to me, where I do, where do I want my energy to go ? And yeah, that's been a good thing, but it's a challenging thing for sure. Yeah. Yeah. It sounds like it has really helped you in your life, but it doesn't mean that it's an easy thing to do. Yeah. Hey, I just wanted to pop in here for a moment. I know that right now with the covid pandemic and also sometimes just living with primary immune deficiency is complex.
And I want to tell you that Sepo has a range of resources available to assist patients and their families in accessing mental health services. All you have to do is send an email to support at TI with the subject line helping hand and you could receive up to five hundred dollars toward mental health support. Switching gears slightly, you mentioned that your work is accommodating. I'm wondering, was there a process of what that process of talking to your work and approaching your work look like?
That one, too, has been a struggle throughout kind of my career is especially in the beginning, not wanting to be seen as someone who is incapable or is less capable than others, not wanting to be kind of a charity case or be given any privileges other people don't have. I worked very, very, very hard in my career to kind of work my way up and be a respected person in my profession. And so it was kind of difficult to communicate.
But thankfully, I do have a very good employer who when I did kind of communicate, hey, I have this illness, it won't affect my day to day like I actually call in sick, much less than the average person does. But just so you know, when I do get sick, I get sick like I want to be here when I am here. You know, kind of before I had this conversation, I let my my actions prove or what is the wording that I, I prove to them who I am before. So they knew how hard I worked.
And nobody they I think for the first year, nobody even knew that I was sick. And then I got meningitis, ended up in the hospital for two weeks without really anything but but yeah. Just kind of being open and honest about it and just saying, you know, this is just something that I have and there will be times where I just need a little bit extra. And yeah. Yeah. I appreciate you speaking to disclosure in a in the complicated way in the sense that it sounds like it was rewarding as a result.
But at the same time, it was, uh, it sounds like it was it was a process to get there. And now that you have done it once, does it get easier or what is your been your experience after having this conversation? Well, at least I like at the beginning when I was first diagnosed, I was kind of the sick girl. And then I moved to another space where I was like, I'll just live like I'm not sick, which is a bad idea.
But, you know, if I just don't tell anybody and I just live my life and it's fine, that didn't work either. So my kind of happy medium is I don't hide it. It doesn't. I mean, but I don't I don't hide my illness. And I tend to bring it up just in random conversations casually. I'll be like, oh, I just have an immune deficiency and this happens. And people are like, what? And so people learn this aspect of my life more organically than going into it. Hey, this is who I am. So it's not who I am.
It is a very big part of me and it has made me who I am. But when I when people see me, the first thing they don't think is optimistic. And so I don't have an issue sharing that information about myself by any means. I don't lead with it. Um, but I kind of just bring it up in random conversations. Now, they don't know if that's the right way or not, but I mean, if I for you, it's worth it.
Yeah. Yeah. So because you said that you don't want to be the sick girl and I want to explore that just slightly in the sense. What do you what was discomforting about that. Like what made you uncomfortable about that. When I was first because like I said, I was finishing my my final practicum and kind of moving into my career. I didn't fully understand what was going on. And I was sick to the point that there was no hiding it.
And I remember even a day I just fell asleep at work just sitting there and people saw me as lazy or flaky. I had a lot of sick days I had when I was there. Sometimes I wasn't fully there or people would make plans and I would go out and and so it was really, really challenging because I worked so hard for a career that I loved and I was working so hard to continue with that. But yet I was kind of overshadowed by this people.
Opinions without understanding, which I think is a big issue with people who have visible illnesses, is that most of the time people don't know, as you know. And so when we have moments, it's really easy for people to judge us. And that was really hard. And again, like I said, I kind of went into a space of, well, then I'm just not going to tell people so that they don't see me like that first, which also doesn't work because it is me. So I've had to kind of just make it about this. And so I am.
And you can see me as both things, yeah, as a as a whole complex person. Yeah, people are like everybody has something. It's it's not unique to us. We happen to have something unique, but everybody has something and. It just because ours has a fancy name doesn't mean it's any words they're any more challenging or any more important than anybody else, you know.
So, yeah, I think it's really beautiful that you extend that, um, humanity to to others, because I think that is a complex way of seeing the world. And I think, like, yeah, I also relate to the the like. It is strange to now have more of a visible, invisible kind of illness when previously I've also had similar experiences of of of being more visibly sick. Um, and there's two there are two very different experiences of stigma.
Um, um, so now that we've kind of fleshed out the complexities of of living with primary immune deficiency, I'm wondering if you can tell me how I think you've touched on it a little bit. But how does, um, how does self care, um, look in your life ? Like what shape does it take? I think we've talked about you've listed disclosure and like navigating it kind of more explicitly. Some like advanced planning and recognizing as limits as as elements of your self care.
Um, I'm wondering if there's any other ones that you want to speak to sleep like first and foremost, most important over top of everything. Sleep. Um, yeah, I, I cannot function in life without nine to 10 hours of sleep a night. And that was something to that I had to recognize that, like if I don't get one night of proper sleep, I'm done. So sleep is very important.
Goldilocks and I said I struggle with I think it's not I know I was a competitive dancer five plus days a week all the way up till I was 18 and unable to do it anymore. And now we know because my illness. But so it was really, really challenging not to be able to exercise and have that outlet. But I've kind of had to find it in different ways.
So dog walks and having that moment to get outside and shut things off and just have a moment and get a little bit of exercise is really important as well. Yeah. And you say shut things off. What do you mean by that? Well, with my I mean with my job too. I spend a lot of time investing myself in other people. So it's kind of the two sides is I have the aspect of living at the patient and the struggles and anxieties and everything that comes with that day to day.
But then I also take on other people's throughout the day. So anywhere from 10 to 15 people a day, I take on their fear, their anxiety, their struggle, their sadness or happiness or whatever it is. I spend my day kind of living in this world with all these mostly women, but men and women. And it's really important for me to separate the two things, especially because stress and anxiety are a big, big factor in my life for being healthy.
I have learned that whenever I am at my sickest is when I'm in my most stressed out. So I'm managing my stress levels. I also suffer from pretty extreme anxiety. I have I mean, all the way back to kindergarten, preschool. I remember having panic attacks so that layered into all of this can be a lot.
So being able to separate and let go of my professional kind of work life and all the emotions and stress that comes with that and then also be able to take a moment for myself with what I go through personally, um, really, really helps me to to stay healthy or healthy ish. So it is a it is an emotional physical like like you can't just take care of your physical side. It is also the emotional and making it easy to like process. And I think recognizing to how much stress affects our bodies.
And the mental and emotional side of things, how how much our outlooks, you know, just if we're happy or if we're positive or what stage of life or in like how big that has an effect on our physical health is crazy. And for me, accepting that, like I said, when I'm super anxious or super stressed or maybe living in more of like a negative cloud, my my health, my physical struggles, and that is something that I recognize.
And I really, really do feel so for me personally, recognizing that even a little bit more than my physical health care is really important for me. It's interesting, I had never thought about Outlook as a factor of living with primary immune deficiency, but it reminds me that I almost constantly say this is the famous brooders quote, which is pain.
Pain is mandatory, suffering is optional in the sense that life is going to happen and we get to choose how we review it, and I had not brought that up to a conscious recognition of self care. I really appreciate you pointing that out. Um, I'm on that note, I actually played with you that says I'll find strength in pain. It is a comfort zone. But that was kind of kind of like you just stand there.
Is that like having that look in that like you may be going through something, but the outlook that you have on that and the strength that you take from that is really going to change everything. Thank you, Nicole. I really appreciate you coming here and sharing all the complex ways that self care takes form in your life.
I really appreciate also you sharing in complex ways in the sense that you are acknowledging that these are things that allow you to have a meaningful life, but doesn't mean that they are necessarily easy to do, making the harder decisions of what am I going to do today and what do I have capacity to do. So I really appreciate you coming on.
As we wrap up, we are going to move into our last segment, which is called Sweet as Pie, because I love puns and I'm wondering what is one gift that you have received from living with primary and efficiency? I would probably say my increase in my ability to be more empathetic with people both professionally and personally, but to kind of realize that everybody has a struggle. You can't always see it personally. You have to live like this.
Whenever I'm in a situation where someone's rude or someone's upset or someone's angry or health care. And if we have I have the ability to kind of take a moment and be like, you know, maybe maybe they have something else going on. Maybe they're struggling with something. Maybe their last health care appointment wasn't a good one. Maybe the last person didn't listen to them. Maybe, you know, something big just happened in their life or they're having a flare up today and just struggling extra.
It's really allowed me to have that extra moment before getting someone on their actions and allowing them that opportunity to speak or act or kind of let it out before any judgments are made. And just to be that extra little little bit more empathetic with everybody that I meet. That's wonderful. Empathy is a complex thing, and I appreciate that.
Like it has helped you to realize the complexities of humans and also acknowledge humans as people that enter a situation with a story, especially working in a health care environment and being a patient in a health care environment. It is it has helped me greatly to truly understand where sometimes people are coming from or the struggles they've gone through. So if anything positive from being being a patient. Awesome.
Thank you so much and thank you also for sharing all of your wisdom and experience. Thank you for having me. A delight also in wrapping up. I want to thank the Canadian immuno deficient patient organization Pippo for supporting this podcast without their support. This podcast would not be able to exist. I also wanted to say that if anything resonated with you and you wanted to share, feel free to email me at a podcast at CPAC IPO.
See, we may end up sharing it in the wrap up episode at the end of the season. Well, that brings us to the end of this episode. The next episode that will go up will be January 8th because we are taking some much needed holidays. But we're really looking forward to continuing this journey of exploring what it means to live a meaningful life with primary immune deficiency in the new year. Have a wonderful holiday.