Episode 42 – What is Spoon Theory?

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: And Katy

Debbie: We’ve survived the first week of January, Katy how you feeling?

Katy: We have, we have, and we’ve got the first bout of sickness in our household because I knew it was coming. Two of his friends went home sick from school last week. So, I knew at some point we were going to get it and we’ve got it now.

Debbie: So, is he off school?

Katy: Yeah, I was hoping, so he was a bit ill on Saturday, and he was ill yesterday, and I was hoping he’d be better by today, but he’s just under the weather. But then the annoying thing is, and I think this leads quite well into today’s conversation in a way, because the school had a big email on Friday about absence from school and keeping track of pupil’s absence. But it made me think actually children that have a condition like JIA, that must be an absolute nightmare for parents because it’s completely out of your control. But schools see everything quite black and white. If you’re under 96%, there’s a problem. If you’re under 90%, there’s a serious problem. Because technically like my son’s a well child, but he still has sick days. So, children that they’ve got a compromised immune system. It must be an absolute nightmare.

Debbie: I did have letters come home from school and I’m pretty sure it was just after she got diagnosed because we were there at so many hospital appointments, having the multidisciplinary team is fantastic and the support that they get is great, but it does mean having lots of appointments, especially we had to go into London for the physio, for the nurse, for the consultants, for the podiatrist and the occupational health as well. So, there were so many, we did have a letter come back and I, because my state of mind wasn’t the best anyway. And then receiving this letter. It really almost seemed to like push me over the edge a bit and my husband saw the letter and he was like, this is just ridiculous. Like you, Katy, it’s ridiculous. Why? Because I have to send in every time they have an appointment, I have to send in the letter or scan the letter. So again, it’s all that admin thing that takes time. And even then they were then questioning it. And I was like, but this is, this is legitimate. I wouldn’t lie. Why would I lie?

Katy: Yeah, you’re not off to Disneyland Paris. Yeah.

Debbie: No, I wish we were, couldn’t afford it. But it is literally that it does seem that that trust is then really not there. And also, for parents, you are given that school, the most precious thing in the world to you, why would you not trust me? I’m trying to do everything I can for my child to make sure that they are well, they are being supported, they’re getting their medications, they’re doing all the, they’re doing everything to be.

Katy: So that they can do the things at school that they need to. Yep.

Debbie: Exactly. And it is really, really tough. And I know when I was in other charities, there is this healthcare in school alliance. I know we’ve spoken about this before, the individual healthcare plan. please do go, we’ll put this in our show notes. So do go and have a look. But it does seem to be that consistent battle again. But then from the school’s perspective, know, flipping it is that you do want children to be in school. We know, and we know that.

Katy: Yes. Of course.

Debbie: But I do think there needs to be some compassion there to say, okay, we get it. But I did actually say when my daughter’s then sitting in at a hospital appointment, can we just have some homework to do? otherwise we sit there bored. Sometimes the Wi-Fi isn’t great, not that we sit on screens and then we do then play hangman and stupid little games. But if they had homework or just something that you’d be doing in class, could they just be doing that? Not all children would want that.

Katy: Yes, that’s a good idea. no.

Debbie: But it’s having that option to do it, I am sorry about your son though. I really hope he recovers soon.

Katy: He will be fine, it’s just the usual.

Debbie: I know, but then how, but for you though, as the parent, someone living with inflammatory arthritis, does it change the way that you go, right, okay, this is what I had planned for today. Again, this is going to be moving on to our spoon theory, what we’re going to be discussing, but does that impact on your plan for the day and your energy levels for the day?

Katy: It does, because he was up, I mean, we’re past the kind of waking up in the night sort of times, but so then when it does happen, so he was up a couple of times in the night, that does really impact you more than I think it did when he was really little, because you kind of get used to it, don’t you? Well, I don’t think you actually ever do get used to it, but you get used to feeling rubbish. Yeah, but I feel very tired.

Debbie: Yes, you know it’s going to happen and so yes, yeah, yeah, yeah.

Katy: this, like, yeah, you feel completely wiped out when that sleep pattern is changed.

Debbie: So, your energy levels for today are different. I know that you did a post ages ago, about spoon theory. Should we just explain what spoon theory is?

Katy: So, spoon theory, from what I’ve learned over the years, is essentially we all have different energy levels. For example, if you start the day with 12 spoons and each spoon represents your energy for that day. So maybe for myself, getting out of bed is one spoon. Going to the gym might take up three spoons, but for somebody else that could take up five. Then cooking dinner might be another two spoons. Doing the school drop off and pick up might be, let’s say three or four spoons. So that’s taken me up to 10 spoons already. I’m having to count on my fingers. And then that means you’ve got two spoons left for maybe the evening. Those two spoons might be taken up by showering or just, being present in the home for the evening. So, essentially that’s why you see a lot of people being called spoonies, because it represents people with chronic illness and the fact that our energy levels might be different. So, somebody without an illness, can quite often, have unlimited energy because just maybe sitting down, taking a break might then replenish their energy levels for the rest of that day. But for somebody with a chronic illness, it’s a little bit harder to replenish those energy levels. And if maybe one day you take up 15 spoons, that might then leave you with nine spoons for the next day, then you can do even less. You’ve always got to be conscious about overusing your energy levels and the impacts that might have on your next day or the rest of your week. So, and I do think, especially for me when I was quite

early in my diagnosis, thinking about that and thinking about your energy levels is really useful. And then equally on days where something’s thrown off your usual routine, I think it can be quite useful to think about how you then utilise your day of spoons.

Debbie: Yeah, I think you have explained it really well. it’s a way of understanding your energy levels and it is having those boundaries as well. But then it’s how about how you pace it throughout the day as well as that resource management. And also, I think there’s one thing that can throw you off slightly, you have to then plan in for your week is when you have your medications. Because I think sometimes that can make you feel that slightly more fatigued, slightly more, I think as James explained his medication hangover. So, you have to plan that in as well. And you know that you won’t be able to do so much the day after as well. Do you find though that it fluctuates throughout the days and do wake up and go, actually, yeah, I feel okay today. I can possibly do more, but it is always trying to find that balance, isn’t it? That you then don’t want to do too much.

Katy: Yeah, yeah. And I saw a really good meme, and I think it was actually on James’s Instagram, was like, he’s quite often when you’re feeling really energized, you might make loads of plans for weeks ahead, then you get to those plans, and then your energy is completely gone, and you don’t want to do them, which is why you’ll see people with a chronic illness cancelling last minute, because they felt great when they arranged it but then when it came to doing it, they were like, no, can’t do that today.

Debbie: Yeah, and again, it goes into the theme of the month, my pace, not yours. It is that limitation that you have because inflammatory arthritis always fluctuates, trying to get that across as well that some days I do have loads of energy, other days I don’t. And I can’t do as much as I did that day because it’s taken me, say three spoons, just to get out of bed and just have a shower and then another two spoons of just getting dressed when your hands are flaring and trying to get dressed. takes so, because you’re in so much pain as well. It is.

Katy: It’s concentration as well, because you’re trying to work out how to do things without making whatever area is hurting hurt, like you want it not to hurt. So, you try to do things in maybe slightly an awkward way, which then takes more energy.

Debbie: Yes, and what I have seen though, and I know some people, actually my daughter’s doing this in school, she hates it, but it’s called Pomodoro. Have you heard of it at all?

Katy: No

Debbie: It’s a popular time management method, and it’s focusing by breaking down your work into, say, like half hour, 25 minute segments. So yeah, so you’re fully focused on that one thing for 25 minutes.

Katy: So, it’s like time blocking. Yep.

Debbie: And then once you’ve after that 25 minutes, you then have a break and it’s making sure that you have that break as well. And I think that’s something that maybe that I would want to try and introduce for me. Just so my brain knows that I’ve got 25 minutes. It’s not too long, but it’s at that 25 minutes of just focusing on either work or just trying to do dinner or just go for that walk. But then knowing afterwards, I’ve got, I’ve got a break. I can make a cup of tea. can just, you know, just stop my brain from overthinking all the time or rest my joints. And I think that’s a really good way of trying to build that into our lives. And actually, I think it’s all about resource management. It’s just managing your resources, thinking of them as energy.

Katy: Yeah. And I guess if anyone does project management, I guess it’s, it’s like managing your life like a project.

Debbie: Yeah, it’s what you do and this other thing that I did see is GPS theory of life. Have you heard of that?

Katy: No, I’ve not heard of that. you’ve got all the theories today.

Debbie: Right, I know I have, I don’t know why. I saw it, must have been probably on Instagram and you know when you plug in your sat nav and it takes you to a place?

Katy: I wondered if it was like GPS as in location. Yep.

Debbie: Yes, it is, yes, yes. Global positioning system, I think. I’ll probably get told off by my husband for getting it wrong. But when you take like a wrong turn, it doesn’t judge you as much as I’d love it to. It doesn’t say, oh, you’re a stupid idiot.

Katy: Stupid, why didn’t you listen?

Debbie: Why, why have you not done it yet? I said left, not right. But then it just recalculates it for you. So, you still end up at your destination, but it’s just taking you a different course. And actually, when you have a chronic illness, I think it works especially when you have a chronic illness, especially like IA, because you never know which ways you’re going to turn that day. That you’re still going to get to your destination. It may take slightly longer, but you will still get there. So, I think again, talking about not doing New Year’s resolutions, but my pace, not yours. And if you did have, say, a goal of just doing a few more movements a day, and if you didn’t do that one day, it doesn’t matter. You can still get to your goal, say over a week but you’ll just get there in a different way and it’s fine and no one’s there to judge you. And I think this is what comes back as don’t judge as well.

Katy: Yes, yeah, don’t judge anyone. And also, I think, as I mentioned, everybody’s spoons are different and what everybody can achieve is different. So don’t judge people for doing more than you, and don’t judge people for doing less than you because everybody has a different approach to life and a different ability to do things.

Debbie: Yeah, very much. Because I think you can see on Instagram and TikTok and some of it is actually what’s now is AI. Could it then be AI generated as well? We don’t know. And it does look like so many people are doing so many amazing things. And actually, it’s like, I can’t do that. You know, but then..

Katy: Very true. Half the time these people are there sharing these updates months after they’ve done them. So, it’s not what they’re doing right now. Right now, they’re probably sat on the sofa like the rest of us in January.

Debbie: Yeah, exactly, yes. This is the thing as well, is actually how true is it? Because again, what’s on social media, it can easily be…

Katy: It’s a snapshot of everybody’s life. It’s not like what their life is like. Well, I hope not because these people must be exhausted.

Debbie: I would be as well. But there are different things that we can use. I know a lot of people do use spoon theory because I think it makes it just makes a lot of sense really because I remember when I was going back to when you were diagnosed, Katy, when I was had my scleritis, the fatigue, the pain and everything, was so hard. Getting out of bed just took near enough, like probably all my spoons for the day. But I just, again, it’s something talking about prioritizing and again, project management, we do these probably in our everyday job, but it’s moving that from your job into your life and actually all these skills that we have, how can we just live with IA a little bit better. And it was prioritizing that all I wanted to do was to be able to pick my kids up from school and take them to school. That was my priority because for them as well, they were so young that they needed that routine. So, I prioritized going, taking them to school, which again, and just doing their dinner. That was it. I was done for the day. And even walking my dog. I think again, if you’ve got a dog and you’ve got IA it’d be really good to know whether it’s just my dog or other dogs, but I think they really pick up on your energy levels as well. Because if I’m not feeling up to it, she’s still happily just lie down. As long she’s with me, even now she’s lying on the bean bag in the office, she’s fast asleep. And even if I talk about going for a walk, she won’t even bat an eyelid. She’s just lying there, whereas other dogs are like, oh my God, you said walk, let’s go. Actually, she’d rather be with me and as hard as it was because she’s very protected of me but that works when my daughter was then diagnosed as well, when she couldn’t get up and do lots of things. The dog just went and laid on her bed and just put her head on her leg and it’s just like, okay, it seems like, okay, I’ve got you. And it’d be just very interesting to know with other people as well what your stories are. And again, weirdly, it is a walk your dog month.

Katy: Yeah, I can remember us talking about this last year.

Debbie: Yeah, and actually why every day should be but then again, I suppose every dog is different as well that you know, my dog is quite happy not to be walked. She gets walked a lot. But if there’s one day when I physically can’t she’s quite happy just to be with me. And that so any more thoughts of getting a dog Katy because I we mentioned this back in the first episode.

Katy: I think because dogs, most dogs as well, one of my colleagues got a dog in the summer and you don’t actually know what type of dog you’re going to get and how happy they would be to be home alone. So I think until my son starts high school and is letting himself in and out, and then there would definitely be someone in at a certain time every day. I probably wouldn’t get a dog until that point. Even though pretty much there is someone home every day, there are instances where there isn’t, depending on kind of work patterns. So it’s hard to commit until like I wouldn’t feel right getting a dog and then leaving it by itself. Just that’s my personal preference and I don’t want to pay tons for dog sitters and things like that.

Debbie: The other thing as well, what works for you. Because I must admit when I got my dog, gosh, she’s going to be 10 this year, so that was 10 years ago. I was at home every day. My kids were young but then obviously not long after we got her, then I got very ill.

Katy: Yeah.

Debbie: But then actually I remember having to go to the hospital, but having to phone my husband to say, can you actually just come home and look after the dog while I just have to leg it into London to a hospital? But I think again that she just picked up on very, very quickly that yeah, she needs me and I wouldn’t be without her to be honest, as much as she drives me mad and, I love her to bits she can help you get through those tough days as well.

Katy: Yeah I said jokingly said it’s more a retirement plan, but maybe a bit before then would be good. Because the problem is as well at the week, because at the weekends I play netball and tennis, I’m also not definitely in at the weekends. So I think a dog’s quite tricky because you have got to be there.

Debbie: Yeah, they are a tie. I must admit they are. And there are times where it’s like, ⁓ it’d be great if we could just, you know, go out for the day and we’ve got no one to look after the dog. So yeah, they are. But there’s not many days like that. And she’s been great for my daughter as well after her diagnosis. Yeah, pets do that. I also think another thing that we are going to be talking about more in February, instead of going into the deep dive into relationships and that is it’s also friendships and having those really good friends, then how do you tell your friends when you’re diagnosed? But then it is constantly afterwards as well, because I think we always get the comments, oh, I hope you feel better soon. It’s lovely. No, no.

Katy: And it’s like, you never will.

Debbie: So we’re going to be talking a lot more about that in February. So, if you do have any good stories, good, really positive, uplifting stories, please share them with us. You can be anonymous, that’s fine. And we can, we’ll happily share them. on the podcast. But Katy, there’s also one thing that has come up recently that we need to mention that we are going to keep monitoring is the launch next year, 2027 of the NHS online hospitals. What was your original thoughts on that?

Katy: I mean, I think in theory it is a really good idea because especially when you’re thinking about the cost of going into hospital, the energy it can take to just go to an appointment if you’re not driving and you’ve got to get public transport if you’re working the time out that you have to take, whether you have to take days off and sort of fitting it. Yeah, yeah. If you’re trying to fit all these things in.

Debbie: And if you’re flaring as well, that’s even worse.

Katy: It can be really, really tricky. But then on the flip side, because I know we’ve kind of been through a little bit with COVID and a lot of hospitals moving to telephone appointments, whether that be video or just old-fashioned telephone, which none of us seem to do that much anymore. And whilst I absolutely loved that experience of just not having to visit the hospital, and having a time slot and I knew I was going to be called in a certain timeframe. I think it’s harder to build that rapport and relationship with your team under that situation. And also they’re not actually physically seeing you. And a lot of the signs of this disease can be quite physical changes in terms of your ability, whether it’s like clasping your hands together and how far you can lift your arms up over your shoulder and things like that, I think are quite hard to monitor. of course, swelling. I think it’s really hard to see how somebody’s joints are swelling on a video call. And obviously you can’t see that on a phone call. I guess it depends how it pans out in terms of, you might be able to get in touch quicker through a digital platform. So, I guess it just depends the sort of details and I guess when it actually comes in, if and when it comes into rheumatology, it’s these things are always hard to predict how it will happen. It could be brilliant, but it could, but like everything it’s likely to have challenges and some people aren’t, as good with I’m thinking of my parents, they don’t have a smartphone. they don’t use WhatsApp.

There’s loads of stuff that they don’t use apps, they hate technology. So if they had inflammatory arthritis and then they were having to do, they’d be an absolute nightmare. I’d be having to help them no end.

Debbie: And I know my eyes, I’ve have had a few video appointments, but then they then I just had to get the camera weirdly in my eye.

Katy: Have you? So how does that work?

Debbie: It was quite bizarre. But then they said, but then they told me to go straight into the hospital. So, it was more of a triage. Yeah, so.

Katy: So, is that like a first over triage sort of service?

Debbie: Yeah, just to see and they’re like, you probably did need to go in because rheumatology at the moment isn’t one. But I think what they’re also trying to do is more of a flip side is that if there’s a big waiting list in your area, it means that you can be seen at any area across the country or England. That is positive. But again, this is going to be something that we’re going to monitor…

Katy: Yeah, so that’s really positive. Yeah.

Debbie: throughout and actually see how it probably goes to work because it isn’t at the moment going to go to rheumatology but we are members of major health advocacy groups that we need to make sure that we are there at the table having the voice of those with inflammatory arthritis there to actually say whether this would work or this wouldn’t but again if you have any opinions on this please do let us know because we’re there representing you

Katy: Yeah, I’d love to know what other people think because that’s just my opinion of my experience.

Debbie: It could work, but then there are, think sometimes when if you’re really worried and you’re flaring so much that you just don’t, you don’t want to have damage to your joints. And that’s the main thing.

Katy: Yeah. And it’s also when you’ve got brain fog, I don’t know, all these things feel more complicated. just, I don’t know, having to navigate a digital solution to me feels like I wouldn’t, I’d just not want to do it. I’d want, I’d want someone to kind of like put their arms around me and talk to me and tell me what to do. Do you know? I don’t know.

Debbie: Yeah, and I suppose one thing that just to let people know, Katy’s battery and her laptop went, but it’s also things like the anxiety of making sure that whatever device you are on is charged and has got enough battery because again, sometimes appointments may not be on time. And then making sure that then you’re not in control of whether your Wi-Fi goes down or not. Then what happens do you then have to wait for another appointment?

Katy: Do you get to the back?

 Debbie: It again is things like that that I think we take for granted so much when you say, just an online appointment. Well, great, but actually in theory, how is that really going to work? So again, we are really going to monitor what comes out of this and how things are going with different specialties and actually would it work in rheumatology?

Katy: Yeah. And it’s people in remote areas, even just a phone signal can be a problem.

Debbie: It really can. Yeah. So how would that really work as well? And then also if you’re under different specialties as well, do they, again, I think obviously for me, I have an ophthalmologist and I have my rheumatologist, but then with people who are with psoriatic arthritis, they have a dermatologist and there’s lots of other specialties that are related to you having inflammatory arthritis and will they then talk to each other? It’s making sure that they do and making sure through the NHS app. It’s just so much else going on that we just need to monitor and just see how it’s going on. But if there are any major updates, we will of course let you know. please don’t forget to rate the podcast from wherever you get your podcasts from. It really does help with the analytics We are on social media. Please do follow us on Facebook, Instagram, LinkedIn and Blue Sky. Please do manage your spoons and your energy and making sure that you’re not doing too much all-in-one go. It’s learning to pace, but at your own pace. That is so important. But until next week, it’s goodbye.

Katy: Goodbye.

In this episode, Debbie and Katy discuss the challenges faced by parents of children with chronic illnesses, particularly in relation to school absences and the perception of illness by educational institutions. They delve into the concept of spoon theory, which illustrates how individuals with chronic conditions manage their energy levels throughout the day. The conversation also touches on the emotional support provided by pets, the potential impact of NHS online hospitals on patient care, and the importance of community engagement in navigating these challenges.

Key topics covered:

• Parenting, illness, and January fatigue
• School absence and chronic conditions (including JIA)
• Individual Healthcare Plans (IHPs)
• Spoon theory and energy management
• Pacing, boundaries, and prioritisation
• Medication-related fatigue
• Pomodoro technique and life “project management”
• GPS theory of life and non-linear progress
• Social media comparisons and chronic illness
• Pets as emotional support
• Friendships and chronic illness (preview)
• NHS online hospitals and digital healthcare concerns

Helpful Resources

• Individual Healthcare Plans (IHPs) – via the Healthcare in Schools Alliance
  http://healthconditionsinschools.org.uk/

Stay Connected

• Follow Inflammatory on Facebook, Instagram, LinkedIn, and BlueSky
• Please rate and review the podcast — it really helps others find us 💛
• Manage your spoons, pace yourself, and remember: my pace, not yours

Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

For more information, head to https://inflammatoryarthritis.org/