The Spoon Theory with Brenda Agnew and Kristy Dickinson

August 24, 2021

Episode Summary

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are talking today about The Spoon Theory, a personal story by Christine Miserandino. The Spoon Theory is an essay that she wrote and had a great impact on people who are living with chronic conditions.

Christine lives with Lupus, a chronic autoimmune disease, that creates her immune system to attack her body’s healthy cells. One day, Christine was talking to a friend who was interested in knowing what it was like to live with this condition and this was the motivation for her to write the Spoon Theory. Listen to today’s episode to learn more about it!

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Episode Transcript

Narrator: Welcome to Simply Unbreakable, with Kristy Dickinson and Brenda Agnew, a podcast from Chronically Simple. Simply Unbreakable is about telling stories, learning from each other and forging new ways to navigate the healthcare system together.

Kristy: Welcome to another episode of Simply Unbreakable. I am your host, Kristy Dickinson, with my co–host Brenda Agnew. I’m very excited to chat today. I love this topic. We are going to be talking about The Spoon Theory. First do you want to say hi, Brenda? Or shall I just get into it?

Brenda: Hi Brenda.

Kristy: Hi Brenda. So I am probably going to mispronounce the name of the incredible woman that created this essay, but please bear with me. And you guys can all Google it. But I think it’s important to start with some context, before we get into our thoughts on just how we – you know, how we decipher this theory and how we use it in our ever day lives. So The Spoon Theory is a personal story or an essay that was shared by Christine Miserandino. I hope that that’s correct, and if not I apologise. But it was just simply an essay that she wrote that people really, really related to it, resonated with. So she lives with Lupus, which is a chronic autoimmune disease, and causes an immune system – or her immune system to attack her body’s healthy cells.

And one day she was sitting with her best friend and her friend wanted to better understand what it was like to live with her condition, and that really started her on – I guess that was the impetus for creating The Spoon Theory. So basically what it is, is it’s used by – or it’s popular among people who live with a chronic illness to describe the idea of limited energy, so using spoons as a unit of energy. For example, you know – and this is where I think it’s going to get into an interesting discussion with us, because obviously I am a person that lives with multiple chronic conditions, and Brenda’s a caregiver, who cares for someone that lives with multiple exceptionalities. So we have different views and lenses on this, but I think we’ve both adopted it as a means of communicating, at least to other people, that we’ve shared it with, that it’s a good descriptor for what we have to go through.

So for me, I found this when I was trying to figure out how to describe to my friends or my family what it is like to live in this body, where there were times when I would wake up in the morning – well, and first let’s just say it’s not normal to wake up exhausted and start your day. Like, your eyes pop open and you’re, like God, I’m so tired. I just slept for, like 8 to 10 hours and I’m exhausted.

Brenda: Yeah.

Kristy: But then to not be able to physically – like, there are things that healthy people take for granted, and rightly so, because you do it without thinking. So you wake up every morning and you get out of bed and put your feet on the ground, and you walk into the bathroom and you brush your teeth. And that is done without thinking, by the majority of the population. I wake up every morning and there are days that I have to roll over, take my medication and lay there for, like 15 minutes, to get my legs and my back to unstiffen enough to get out of bed.

Brenda: Right.

Kristy: So it’s hard to describe that to someone. The – you know it’s kind of like a give and take. You’ve got a bank account of energy. And if I use my energy for this, if I use a spoon, to have a shower then I can’t do this.

Brenda: Right.

Kristy: So sometimes it’s bigger. Like, if I take my kids to Wonderland I know I’m not going to be very mobile the next day. And I think –

Brenda: Right.

Kristy: – people can kind of understand that. It’s more when you get to the granular level of it takes so much energy to brush my teeth and wash my hair that I need to lie down afterward.

Brenda: So that’s what I was going to say. I think the example of – I think the example of the – you know, the Wonderland or Disney or any of those are probably pretty well felt. I don’t think that necessarily – well no, I think you get the physical toll after, but obviously for you it’s much different. For me, with [Maclain 00:05:21] it’s much different because we’re hiking him in and out of wheelchairs. We’re pushing up and – you know, it’s just we’re exerting a ton more energy, and I’m worrying about that now because we’re leaving for camping on Thursday. But I think if I put it in perspective, you know, you’re starting, like a simple day.

So, again, I’m getting my – you know, people get themselves sort of psychologically prepared or they get themselves all ready for something like a Wonderland trip, like a trip with the kids, like whatever, an exertion – a day where you’re expected to have some exertion, whether that’s mentally or physically, but that shouldn’t be every day. So I think, you know, to your point is you’re starting your day like that. So you’re already starting your day deciding if you have – if you want to use a spoon to brush your teeth, and I get that. I mean I think it depends on the day, who you’re seeing.

Kristy: Yeah.

Brenda: But, you know, that’s how you’re starting your day. And I agree, you know, that it’s – that’s, I think, the part that’s really eye-opening for people who are not living with a chronic condition, or not caring for someone with a chronic condition, is that – and it’s every day It’s not just the Saturday when the kids are home. It’s not just at 03:15, when they get home. It’s not just when you have a big work event. It is every single day. And it doesn’t change.

Kristy: Right.

Brenda: Right? It doesn’t change. And I – if anything, Kristy, I may actually have more relief from that than you would, because I don’t live with it personally. I mean I have – you know, sometimes my depression gets to me, but from a chronic illness perspective I don’t deal with that. So when I have a caregiver or when Maclain is at camp or when I’m away, you know, without him I can literally, you know, have a day where I’m not worried about that. But you don’t have that. Every day you wake up you have that.

Kristy: Yeah, it’s – I was – you know, it’s funny because I was talking to someone yesterday. I’m trying to move my body every day, for my mental health, more so than my physical health. Obviously for the ankylosing spondylitis I need movement. That’s important for me. So it is a part of my treatment plan, to get up and just do something. But more so I’ve noticed throughout this – you know, the 18 months that we’ve been home and spending so much time in front of the computer, mentally I need to get outside and move my body. So I’ve started walking. I don’t love exercising. Like, I’m not someone that, like wakes up and is, like the Kool-Aid Man, like let’s go, like busting through a wall. So mentally it’s a bit of a push to get me to commit to some sort of an exercise regime. But that being said, I really – I’ve grown to love my hour.

And so I just go five K, and some days it takes me longer and other days I can do it faster. But yesterday I was talking to someone while I was on my walk and I was trying to figure out, because my pain has – it’s increased significantly, I think, in the past, probably, six months or so. I’ve taken myself off of some treatments and I’m, you know, just adjusting things. So trying to figure out – because everything’s a cost benefit, right, like a risk benefit. If I do this then I can’t do this. If I take this medication it could impact this. So I’m always constantly weighing pros and cons. And I was trying to figure out, yesterday, if the mental toll of subconsciously – because now I do it subconsciously. If I wash my hair and I shower and I get ready for my day-to-day then I know that’s going to impact me in this way.

But now it’s – like, I don’t do it – when I first got sick and I was trying to figure out, you know, what my life was going to look like I was really conscious of, and intentional with my actions. So I’m going to do this and I know I’m going to pay for it here. Or I’m going to plan this trip and then I know I’m going to need X days off at the end; so living with it for so long it becomes a part of your psyche or who you are, right? So I haven’t thought about this – like, obviously I was thinking about it and preparing for our podcast today, and thinking about being a spooney, if you will; like, being someone that has to count their spoons and knows that I have a set amount of energy each day, and even that isn’t – like, even that’s not reliable.

Because some days you wake up and you’re, like oh, like I have no spoons today. And I didn’t even do anything. Like, all I did was sleep. So I don’t know. It becomes a bit of a mental game as well, I think. Like, mental and physical. So we talk about the units of energy, but then also the amount of mental bargaining, I guess, internal – that internal monologue of – because I always constantly feel like I am not performing enough. I’m not doing enough.

Brenda: Right.

Kristy: And if I choose to give my all to my work then I am taking it away from my family. And if –

Brenda: Yeah.

Kristy: – I choose to give everything to my family, or be present and go outside, when I really just want to lay down, then I’m going to pay for that in another area of my life.

Brenda: Right.

Kristy: If that makes sense.

Brenda: And I think what I – what I sort of take away from the theory as well is I think it’s a good tool to use, for the person who’s living with the situation that they’re in. That they can use that as a way, like you said, to hopefully justify to themselves that they need to have a nap to refill, or they need to, you know, think about spoons in a tangible way, because that’s what they’re going to have throughout their day or – but then what I like about it and what I wish more people knew is I’d wish, and this is the point of this podcast [unintelligible 00:11:38], more people outside of this know about this theory. Because I think that’s what makes – I mean we’re so used to hear burning the candle at both ends and what does that even mean? I think when you’re able to sort of say to someone, you know when you can explain The Spoon Theory and say, like you know, you wake up and every day starts with 10 spoons and each activity could take one spoon or one activity could take all spoons.

You could run out of them by 09:00 a.m. You can run out of them by 10:00 a.m., by six o’clock at night, whatever that is. I think it would be a lot easier for people on the outside of this to be able to understand and comprehend what the person’s going through if they could understand the currency of spoons. And I think that’s what I wish more people – you know, I’d like to see that theory – I mean had never heard of it until I met you. And then I would see your post and it would mention about spooneys and I didn’t know what that means. It was the first that I’d heard of it. And then when I really – I mean listen, you could apply that to anything. It could be the pencil theory.

Kristy: Yeah.

Brenda: It could be – I mean it could be anything, but it’s spoons. And I think once someone grasps the concept of that – it made it easier for me to understand what you were going through when you were, like I’m out of spoons today. I’m, like OK, Kristy is out of scene today. She is – and not just out of it because – listen, the typical person starts their day with a number of spoons. And maybe that’s the best way to sort of say this. I think every person starts their day with spoons, everybody does. I just think that some people have way more spoons than other people. And I think with a chronic illness or a chronic condition, because there’s so many different things coming at you, the number of spoons you have probably is not as many to start with.

And then how fast you burn through them is very different. But it really is something that’s applicable, I think, to anyone that’s walking the face of the earth, is this is what you wake up with. Some people might have a hundred, some may have 10, because of the circumstances that they’re in. And it would be nice to sort of almost have that more being the commonplace. That people thought about that from their own perspective, but then put that in the perspective for other people. So when you post I’m out of spoons and, you know, I need to lay down I’m, like OK, you know, I get that.

Kristy: Yeah.

Brenda: I get that. Because – but, again, I think people have to understand the inherent piece of it. Because there is probably still people that are, like oh yeah. So have a nap and continue going. But you’re, like the spoons don’t replenish that – once they’re gone they’re gone. Once they’re gone they’re gone and, you know, I only have so many.

Kristy: Well – and I think that – so you’re exactly right, and it’s that knowledge of there are things that every – like, alright. I shouldn’t say normal because that’s not right, but a healthy person does, without thinking. So you get up and you shower and you make breakfast and you go for your walk or you do your physical activity or you play with your kids. You know, you go for a swim. Those things healthy people do without thinking, because they are just a part of existing. And the difference is, I think, when you live with a chronic condition that impacts your ability to just exist and just be a functioning member of society.

Brenda: Yeah, yeah.

Kristy: So showering is, like the base level. I need to shower before I leave my home –

Brenda: Unless you’re 15 –

Kristy: – but to –

Brenda: – and then it doesn’t matter.

Kristy: Right, yeah. Then you just –

Brenda: They just – yeah. It doesn’t matter. It’s not important, but – you’re right. It’s a basic skill.

Kristy: Yeah, so those – like, those base level – like, we’re not talking about going to Disney. We’re not talking about going on a hike. We’re just talking about I’m just trying to exist in society.

Brenda: Yeah.

Kristy: And I find that so disheartening sometimes. Like, it’s – I feel like it’s kind of – when I look at it from the [40,000th 00:15:43] view, the fact that I have to exchange a spoon to shower means I probably – that takes some time off of me hanging out with my kids later. It’s so depressing to me.

Brenda: It is. Yeah and, again, Kristy, I’m not the half glass full. This is why you’ll be, like – but if I look at it from another perspective I think it helps to prioritise. And –

Kristy: Totally.

Brenda: – I think that that’s a good thing. Because, like you said, I mean we’re always feeling like I don’t do enough or I don’t – but what does that mean, I don’t do enough? Like really, I get it. I get what you’re saying. But we all have so much guilt. So, you know, like Liz had asked me earlier how Maclain’s summer was going. I said: “Well, if you ask him he’ll tell you it’s the most boring time of his life right now,” and I feel bad for that. But there’s no camps. There’s no – you know, there’s just no things going on. I’m trying to do the best I can for him, and I have that guilt because there’s only so much that I can do. But stepping back from that, you know, I think having that spoon piece I think is a great way for individuals to be able to say these have to be my priorities.

And I think that’s a good – I just – I think people who run at a million miles an hour, regardless of what they’re doing, you know, you need to have that priority piece. And especially when you’re living with a chronic condition, or especially when it’s someone like me who’s going to get caregiver burnout or, you know, that kind of thing. So if I look at it from that perspective yes, it sucks that you have to trade a spoon – like, you have to trade a shower for something else. But I think it does allow you to sort of say you know what? I need my spoons for this, this and this. So then this afternoon it’s going to be laying on the couch watching a movie with the kids and that’s going to be my – you know, my downtime or whatever that looks like.

So I do think it’s a good opportunity if people are aware, if they had to be aware of how many spoons they have, and they have to be aware of that means, but they have to be OK to say I’m out of spoons by noon and be OK with that; because that’s just the reality of where they’re living.

Kristy: Well – and I go through cycles of that, where I’m accepting of my limitations, and then I’m, like raging against them. And I think –

Brenda: Right.

Kristy: – that that’s where the mental piece comes in, right? Like –

Brenda: Sure, yeah.

Kristy: And also, I think from a culture perspective, prior to the pandemic we went through – and maybe this is just because of my personal experience, excuse me, as an entrepreneur, as a female entrepreneur who’s trying to balance a family with starting a business with growing something; the hustle culture.

Brenda: Right.

Kristy: You need to hustle. You’ve got to go. You need to, you know, work, work, work; the boss babe. Like, that culture, to me, I got very wrapped up in it. No one can do – like, I need to keep going. I was like a hamster on a wheel. And the fall from that, or the fallout from that, for me, I noticed when the pandemic hit and the whole world was forced to stop the messaging in the communities, from a business perspective, that I’m a part of, that hustle culture really slowed down. And it was more about, you know, being intentional, quality over quantity. So you can work 6 hours a day and be super productive in those six hours or you can work 10 hours a day and phone it in and be, you know – not phone it in. That’s the wrong. But you know what I’m trying to say. Like –

Brenda: Yeah, I know what you’re trying to say.

Kristy: So, you know, you don’t necessarily – it’s not about the quantity. It’s about the quality. And when I focus on that that’s where, to me, The Spoon Theory is super helpful for me. Because, to your point, if I spend a really good hour with my kids and then we watch a movie I shouldn’t feel guilty about just laying with them and watching a movie, if I’ve spent some really good quality time with them, going on a family walk or doing something that – like, physical, that takes those energy units from me. I don’t – yeah, I don’t know. I feel like I’m just constantly at odds with myself.

Brenda: Yeah. But I think that would be the case, whether you had – you know, again, I think that would be – regardless of what this theory was I think that’s where you just – I think that’s where the power of embracing that type of tool comes into place. I look at it as a way – at that person – like,  I wish – I mean, I need to look more into it and I need to probably start to embrace it because, again, I really pay attention to it more when I’m looking at your life or what you’re doing and I hear other people mention it.  I have another friend of mine she talks about things in spoon theory. But, you now, I think I need to start embracing that and using that more commonplace in my life. So A, my friends and family get to hear it more. So then they can understand it a little bit better.

And then I can understand it. That, you know, this is it. This is what you have. And, again, I think it’s a prioritization piece. But it’s also a – that’s all I have, so I can’t feel guilty. I can’t feel guilty when I’m out of spoons by two o’clock, because that’s just the nature of the beast. We didn’t get sleep last night. You know, my medication’s not kicking in. The weather’s been bad. You know, if I use Maclain as an example. You know, maybe we had to do a lot of heavy lifting that day. Maybe I’m stressed out because there’s appointments being made; maybe he’s being emotional, I’m having to deal with that; whatever that is. That’s all you’ve got. That’s all you’ve got.

Kristy: Yes.

Brenda: And by four o’clock, you know, if that’s what – if you have no more spoons at four o’clock you need to be able to say to yourself that’s it. I’m done. And I think it’s really healthy, too, that someone have a good grasp of how many spoons they have.

Kristy: But I will say I think it’s where I find – and I think that the point of the essay was for her to be able to articulate. If she can’t explain it to herself and to her friends and family in a clear way how could she expect society to understand what it’s like. And when I shared it with my family and, you know, with my friends, like I share it with you. You read it and you’re like ah, I understand.

Brenda: Yeah.

Kristy: And so it does make it easier if I wrestle with internal monologue of, like guilt and feeling less than and feeling anger, whatever it is that day, to be able to say to my husband or my kids or my dad or you I’m out of spoons –

Brenda: Yeah.

Kristy: – and then you understand that and you’re, like OK –

Brenda: Yeah.

Kristy: – go lie down.

Brenda: Yeah, yeah.

Kristy: That is so much easier than, like I’m sorry I’m not feeling well. I can’t get up because I did this, this and this and now I can’t do this.

Brenda: Right.

Kristy: And it’s like the constant explaining of how you’re feeling is exhausting.

Brenda: Right, right, right, right. You know, as were talking I think that also [breeds 00:23:19] where we need a better – like, that comes into the empathy, sympathy piece too, and that’s where, you know, you need people to be more understanding and more aware, and the other side has to grasp; so, like yeah, Bob’s going to be, like he gets that, right? That’s just – he will get that. If I said something like that to my husband he’d be, like I don’t – we have spoons in the drawer. I don’t understand. I just did the dishwasher. Like, there’s – what are you –

Kristy: Yes.

Brenda: What? So it’s very different. And for me, I think, to articulate to him it would have to be I’m tired. I’m getting a migraine. I feel sick. Whatever that is, in order to sort of articulate that. But that’s not always true. It’s not always that – like, the spoon is just so much better, because maybe I’m not sick, and –

Kristy: Right.

Brenda: – maybe I’m not tired. I’m just – and maybe I’m physically fine. I’m just – maybe I’m mentally exhausted, or maybe I’m emotionally spent. It shouldn’t matter what each of those spoons represent. Once they’re gone they’re gone, whether I physically use that up or whether I mentally used it up or whether I emotionally used it up. And it would be –

Kristy: Yes.

Brenda: – so much easier for the person living with it to be able to say, no explanations needed, I’m out of spoons. Like, I’m out of spoons. I’m trying my best but I need to go lay down because that’s it. And for someone to say no problem, I get that. Go ahead. You know, go do that, whatever. But that just takes such a larger and wider understanding from the community around us, and we know that that’s just not there, you know?

Kristy: I think having conversations, though, and sharing, like we are today, and – you know, obviously we do it within our communities. Like if I post something, and with a hashtag spooney life, there are members of the communities that I’m a part of that will get that immediately. And then there are other friends that’ll be, like what the heck is that? So if we could make – like, if we as a society could be more comfortable with the fact that people live with limitations, like – and this is probably a lot to unpack because I’m not even comfortable with the limitations that I live with –

Brenda: Right, right.

Kristy: – so how I can expect my friends and family to be comfortable with that is a bit rich, coming – like as I say it now, like that’s not –

Brenda: Right.

Kristy: That’s not probably the easiest. But I just think it’s a broader conversation for society. Like, there was a post in the Harvard Business Review today that I saw. I don’t know when it was posted but I saw it today, about how managers should be conscious of employees that live with chronic pain.

Brenda: Right.

Kristy: And I feel like chronic pain is something that is so not talked about, because it’s often invisible.

Brenda: Right.

Kristy: So – and the same, like living with invisible illness. That’s a whole discussion that we’ve talked about. Not having those visible cues. So, you know, Maclain is in a wheelchair, there’s a visible cue that he lives with something. If I am walking without a cane or without an aid there would be no visible cue that – unless I’m hunched over. I’m so grateful that, and I’ll call her Christine, like we’re friends, we’re not, but I am grateful for her that she was able to articulate in a way that resonated with so many people.

Brenda: Yeah.

Kristy: Because it is such a simple theory.

Brenda: Right.

Kristy: And it opens up a broader conversation for the person that introduces it to their community, like to their friends and family. Like, now my friends know, and I say all the time, I probably will never come when I’m invited to things. Like, 9 times out of 10 I’m – well, all of my close friends will tell you I’m always a solid maybe when people ask me to make plans.

Brenda: Right.

Kristy: And more often than not I don’t go.

Brenda: Right.

Kristy: Because I know that typically by 06:00 p.m. I’m done and I’m –

Brenda: Yeah.

Kristy: – like, limping to the finish line of the day.

Brenda: Right.

Kristy: But I never want to not be invited. Like, it means a lot to me that you still ask me. But they have an understanding of my spoons.

Brenda: That’s the difference.

Kristy: So they don’t take it personally when I don’t come.

Brenda: Right.

Kristy: Or they will – you know, because I have more spoons in the beginning of the day typically we will do things in the morning –

Brenda: Right.

Kristy: – versus at 09:00 p.m.

Brenda: Mm-hmm, right, which is a good point, because I think for us, in the beginning, there was a lot of things that we just said no to because we couldn’t with Maclain, and then the invites stopped.

Kristy: Right.

Brenda: Right? And that’s – you’re right. You still want to be included and involved in the conversation. You just can’t always make it happen. You just can’t always – and we learned the hard way, trying to make it happen. We learned – I mean it’s – you know, again, we did. And, you know, again, we’re leaving for camping this [unintelligible 00:28:30] and –

Kristy: I was going to say, you still learn. Like, you –

Brenda: I do. I do. I mean the circumstances of why Maclain is coming this weekend are different but, you know – I mean, you know, Graham’s already grumpy about it. And we haven’t even packed the car and left yet. And I’m kind of, like let’s just – and you’re right. That’s going to be something where it’s going to use up all my spoons and it’s going to be – but I’m also – you know, I’m looking at it like we’re going with other families. I’m going to rely heavily on them to just give us a bit of a break here and there, or to bear that burden a little bit with us, but – but, yeah, I mean we are learning more over time, that there is just things we cannot do. And unless Maclain insists on doing them then we move heaven and earth to make it happen for him. But we’ve just – we really sit back now and say OK, this is just – it’s just – it just can’t be done. The price we pay is too great –

Kristy: Right.

Brenda: – for what we’re going to experience here, whether that be, again, a physical toll or that be, you know, mental – whatever that is. And we even do it in the context, now, of like we think about flying places and we’re, like OK, well, you know, could we handle with him an eight hour flight? It would take me three days to recover from that, right?

Kristy: Right.

Brenda: So, you know, I think we’re putting it a little bit more in perspective, but – I mean I like – I mean as we’re having this conversation I’d like to start using that theory more in a – not in a more practical way, but I’d like to start adopting that a little bit more. Like, I’d like to start talking to it a little bit more and making that sort of part of how I manage and explain our day, to the point where maybe my friends are – you know when I can say I’m out of spoons. Now listen, you’re also an inspirational poster person so when you say spoons or whatever they’re going to be, like oh yeah, yeah. I say something like that they go what are you talking about Brenda? Like, what do you mean –

Kristy: Yes.

Brenda: – The Spoon Theory? Like, spit it out, you know?

Kristy: Right.

Brenda: Are you tired? Are you – but it’s such a great analogy.

Kristy: Well do you think that it could – so what I’m hearing is you feel like it could carry over to caregivers.

Brenda: Yes. I think it does carry over to caregivers.

Kristy: Yeah.

Brenda: Because –

Kristy: Because –

Brenda: – I think if you ask Maclain – I mean, you know, he has no concept of, like – you know – but, I mean, he also articulates it in his own way –

Kristy: Yeah, he self-regulates himself very well. Like, because when he’s done he’s, like you need to go home now. I’m done.

Brenda: Yeah, yeah.

Kristy: But I respect that.

Brenda: I do too. And I think that there’s –

Kristy: Like, we could –

Brenda: – a lot of power –

Kristy: – learn from him.

Brenda: – in that. Right.

Kristy: I think there’s so much power in, like I’m doing this and now I’m done and now we’re going home.

Brenda: Then his friends are, like OK.

Kristy: And he’s, like – it’s like a switch. Like, I’m doing it. I’m fully involved. And then you’re, like yeah, peace out. I’m out.

Brenda: Yeah, you need to go. You need to go. But his friends appreciate that, again, because I think they know him. They’ve – you know and he’s – like you said, he’s managed expectations. You know, he’s done that. But I think as a caregiver – I think the other difference with a caregiver too is that because we’re not living with the condition – like, it’s, you know – I think when you have – so for Maclain as an example, he can only sit for so long or he can only think about things for so long. He can only focus for so long, or whatever that might be, you know, I don’t have those same pain levels, or I maybe not have those same physical limitations or I may not have those same pieces, so I don’t think I always would put myself in that situation of – the same as you would, where I need – you know, I need to lay down and rest because my legs are so tired from walking around with the kids, or I need to lay down, whatever. I understand it because you have a physical – you have a chronic condition that affects you physically. I’ve seen it with you. I’ve seen your body spasm. I’ve seen that kind of stuff happen. I don’t think – I think caregivers – I think first of all we think we need to wear a cape.

Kristy: Yeah.

Brenda: And that is wrong, because we’re not superhuman. We’re not superheroes. We just fell into this position. We just have to deal with it the way we do. And I think that’s maybe a little bit more of the difference, is – when I lay down, because I need a break that means I’m taking away a support for Maclain.

Kristy: Right.

Brenda: Or that means I’m taking away – so caregivers should embrace it and they should start to utilize it, and maybe you have to reframe it a little bit, in the way that you think about it, but I think it’s – it would be harder for caregivers to grasp that concept. But I think it’s 100% applicable, right? I think it’s –

Kristy: Yeah.

Brenda: It’s just – you know, it’s – and maybe it’s different for someone else to understand that Kristy. Maybe it’s easier for people to understand oh yeah, for sure, Kristy has, you know, issues with her spine. Kristy has, you know, kidney issues. Yeah, 100% she should lay down. Whereas maybe someone like myself, aside from being, you know, 51 and getting old, you know, I don’t have an excuse as to why I need to necessarily lay down, whatever, right? Like, that’s – so I think it’s a little different. I think people might be, like OK. And I think it takes more explanation. I had to lift Maclain a lot. We had to do this a lot. I had to – he didn’t sleep all night so I was tired. Like –

Kristy: But the whole idea, the whole concept of the theory is to not have to –

Brenda: I know.

Kristy: Like –

Brenda: Not to have to explain it.

Kristy: – you’re exchanging a unit of energy for an action.

Brenda: Yeah.

Kristy: An action equals a unit. As a caregiver you are expending units of energy, caring for your loved one. Whether or not that’s physically lifting them or mentally supporting them or emotionally worrying about them.

Brenda: Yeah.

Kristy: It’s a unit of energy. And if we go by the theory of you only have a finite amount of spoons for that day –

Brenda: Right.

Kristy: – then really, to me, it should be transferrable. Like, I guess – I understand the grasping of it would probably be a challenge, but if you look at the foundation of the theory that Christine posed, I think it makes sense that – like, I feel like other caregivers – Ray. Oh, see now Brenda’s had to mute herself because there’s someone at our door; the joys of podcasting.

Brenda: I know. I know. But as you’re talking, I think it’s the variable Kristy, and I think maybe that’s the difference, is – you talked before about [unintelligible 00:35:12] your spoons, right? Because that is just – again, you may have a little bit of variability, in that, you know, depending on if you’ve had a relaxing weekend you may have more to get you through the next day, whatever that looks like, right? But I think for me there’s more variability. Because – I mean, let’s be honest here, right? It’s not my – it’s not – you’re –

Kristy: Yes.

Brenda: I can never say it, but your ankylosing spondylitis doesn’t – yeah, I can’t say it.

Kristy: Ankylosing spondylitis.

Brenda: So that doesn’t go away. [Audio distorts 00:35:44], but you’re [audio distorts 00:35:48]. It doesn’t go away. That is your condition that you live with. Some days it’s better or some days it’s worse, [unintelligible 00:35:56] other factors [unintelligible 00:35:57]. Whereas for me, if I have a day where we woke up and we’re laying around and Maclain is happy to sit in his chair and watch a movie all day and – it’s much different for me. Because I don’t have to expend very many spoons because he’s not requiring that from me. So my spoons are almost directly tied to him –

Kristy: Right.

Brenda: – in a caregiver perspective.

Kristy: Yes.

Brenda: So depending on how his day is, or depending on what’s going on. So, yeah, it’s – I think it’s a little bit different in that respect. Like, I can get up – let’s take out the mental health piece out of it, because that’s not – that’s a different conversation. I’m looking at this strictly from a caregiver perspective. Theory dictates that I should be able to get up and, you know, have a shower and do all those sorts of things if things have gone well the night before, or if – you know? Like –

Kristy: Yeah.

Brenda: I’m kind of not articulating that the right way but I think it is a little different. I think it’s a little bit different because ours is so predicated on a situation that we’re involved in, versus a disease or a condition that we’re living with. Mine is really just based on someone else’s –

Kristy: Spoons, needs. Yeah.

Brenda: Right. So, yeah, someone else’s, you know – yeah, someone else’s needs, someone else’s spoons. But, you know – yeah, so I think I do start with a different – I bet you I do start with a different number. Yeah. But, yeah, do I think it’s transferrable to caregivers? 100%. There’s no doubt about it. There’s no doubt about it. And it would be so much nicer for me to be able to say to people, you know, I am out of spoons. And for them to say I get it Brenda, OK. You know, I’ll touch base with you later or, you know, what can I do or whatever.

Kristy: That is such a big – it’s such a huge relief to have the people in your life that will say OK.

Brenda: Right.

Kristy: I get it. Like, if I can say I’m out of spoons and someone in my life says OK.

Brenda: Yeah.

Kristy: We’ll talk later. Let’s move this meeting. Or you’re good, just go lie down for an hour.

Brenda: Yeah.

Kristy: That is – it just is so impactful for the person that is living with the condition, because we always wrestle – I haven’t met a single patient that doesn’t wrestle – person, sorry. Not patient. But I haven’t met a single person that lives with a chronic illness or a disability that doesn’t wrestle with, their own limitations in some way or another.

Brenda: Right, right, right.

Kristy: So to not have to explain it, when you know – like, if I have to explain it to you I’m always wrestling with it internally. It’s really – like, those who know me know that it’s rare that I will say I can’t – like, I just can’t do this.

Brenda: Yeah, yeah. Yeah and I’m the same way. I’m the same way. It’s usually a migraine that’s taking me down or it’s, you know, something else that’s taking me down for me to say I can’t do this. Sometimes it is my mental health. Sometimes it’s – you know, it’s depression or anxiety, whatever it is. But there is power when someone says no problem. We’re going to miss having you there –

Kristy: But no problem.

Brenda: – but no problem. We get it. We get it. If you want to come later, if you want to – you know if you want to – whatever. Whatever it is, it does make a big difference. It really, really does.

Kristy: And I think maybe that –

Brenda: You know –

Kristy: – is the – that’s the biggest – for me that understanding for people that aren’t a part of my community, the understanding that they gain from reading that essay is probably the biggest whim of what she – like, the power of her words. And that –

Brenda: Right.

Kristy: – theory is to be able to easily say – and know that it’s not – like, how often do I – when was the last time you heard me say I’m out of spoons? Like, I don’t use that very often.

Brenda: No.

Kristy: Like, it’s rare for me. Things have to be fairly bad for me to say I’m out of spoons.

Brenda: Right. But even not even out of. I think it’s important if you just say you’re running low on them.

Kristy: Yeah.

Brenda: Right? Like, I think it’s OK to sort of say I’m coming to the end of them and I don’t know if I’m going to have enough to get through – I’m not out of them yet but I don’t think I have enough to get through something else today, or whatever that is, right?

Kristy: Yeah.

Brenda: So I think that’s the other part of it.

Kristy: And I think – I wish that – and I feel like I’ve tried to do a good job articulating this to my friends and family and the people that I would – you know, that – if I share with you how I’m – like, the amount of spoons that I have, then you’re someone that’s important to me, right? It’s never because I don’t want to do this with you or I don’t want to contribute, I don’t want to attend that meeting. It’s because the – again, that cost benefit, right? Like, if I do this I can’t do this, or if I do this it will impact me in this way. So I guess I wish that – I hope that I’ve done a good job, with my friends and family, in explaining that it is never a personal thing. It is simply a – I look at it from, like a transactional. I only have a set number of spoons and I can’t use all 10 of them to go to this theme park with you today, because I have meetings. I have –

Brenda: Right.

Kristy: – my kid’s baseball that night and a hockey tournament coming up.

Brenda: Right. Yeah, right. Yeah, I agree. And I think – you know, whereas if someone knows me, and you said you want to go white water rafting I would just say no.

Kristy: No.

Brenda: So there’s no explanations or excuses needed. No, I would not like to do that.

Kristy: Right.

Brenda: I will not be asking you to do that, Kristy, just so we’re clear. But no, I don’t want to do that. So when I – there’s a difference between me saying no, I don’t want to, thank you for the invite but I’m not interested, versus I can’t. I just –

Kristy: Right.

Brenda: You know, I would love to but I can’t. And then, again, for someone to be able to say – like, I feel like when I say to someone – when I say I can’t do something I have to put, you know, this long diatribe as to why I can’t do it. And then, you know – like, where it would just be easier to say I can’t. I’m out of spoons. I can’t. And have them say I got you. I get it. I know. But, like you said, I mean, I haven’t talked like that. I haven’t used that terminology, if you will. I haven’t explained things I that fashion. So I don’t think my circle is familiar with that. I use other words to express how I’m feeling. And so I think, like you said, it’s just having the conversation. It’s more awareness. It’s – but there’s a lot of power, again. There’s a lot – if we can get this word out there and people can talk about this more consistently and –

Kristy: Outside of our communities.

Brenda: Yeah. It’d be super helpful.

Kristy: [Unintelligible 00:43:07] addressed – yeah.

Brenda: Yeah. It’d be super helpful for people to just adopt this as a thing and that’s the way it is. And, you know, people can just use that and not have to explain anything else. It would be nice to do that.

Kristy: Well, I think for anyone listening, if you’re interested just Google: “The Spoon Theory” and Christine’s essay will come up. And it’s a short read. But it’s clearly impactful. Like, it’s been embraced by, you know, thousands or hundreds of thousands. I don’t know. I can’t – there’s no [unintelligible 00:43:43]; we never fact check these podcasts.

Brenda: No we don’t.

Kristy: But it’s been embraced by a lot of people.

Brenda: Yeah.

Kristy: But, you know, if you have anyone in your life that lives with anything, you know, read it. Take the time to read it. Because it might give you a little bit of understanding as to what it’s like to be in their body, and what it’s like to have to consider every move that you make.

Brenda: Yeah.

Kristy: Because that is something that – again, if we go back to just the – the whole reason why it was written was to try and explain to her best friend what it was like to live with Lupus.

Brenda: Right.

Kristy: You know, if anyone that you love or care about is living with any type of a chronic condition then if this can help you have insight as to – into what they might be navigating then to me that’s helpful.

Brenda: Until next time.

Kristy: Yeah, until next time. OK, bye.

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