Episode 35 – How to look after yourself with IA?

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: And Katy.

Debbie: How’s things, Katy?

Katy: Very good. I’ve recovered from all the weekend of parties and stuff like that. And as you’ll see behind me, my son is learning the four times table at the moment. So we’ve got loads of post-it notes around the house with like one times four, two times four for the toilet, when he’s eating his breakfast, because they do like a test every single day where they have seven seconds to answer the questions. And I think he doesn’t get them wrong. He just runs out of time to work it out. So, we’re just trying to help embed what the answers are.

Debbie: Gosh, that’s proper parrot fashion. That’s not then working out. That’s not learning. That is literally just trying to remember stuff and not trying to work out how you get to that number. Wow.

 Katy: So, I don’t think that’s learning, no. Well, the problem is the friend he sits next to gets 10 out of 10 every single test. So that makes it quite tricky because he doesn’t get 10 out of 10. But yeah, we’ve just got Post-It notes everywhere this week.

Debbie: Yes, I did wonder what they were, but obviously that’s what they are. So yes, at least…

Katy: Yeah. Just thought in case anyone else wonders. Those listening, there’s post-it notes behind my head.

Debbie:  Yes, they’re bright blue so that you can actually, yeah, they’re brand colour. I like the branding colour.

Katy: yeah, I could have said they were things to do with the charity, couldn’t I?

Debbie:  It just shows how honest we are.

Katy: Yeah.

Debbie: Yeah, I must admit my ankle isn’t as bad as it was after we did our last episode. I did go back and put my feet up. I took my laptop with me, but I did just pace myself. I’m learning to pace myself through the day and trying not to do too much. So that did work, and I did feel it getting quite stiff quite quickly. So, I did make sure that I was doing like movements, like moving it in a circle. And up and down movements just to keep that lubrication going. But my joints do get stiff very, very quickly when they’re flaring. I usually used to get more of the pain, but the stiffness now just properly kicks in. but it’s getting there. But what we’re to be talking about today is more of a follow on from last week, because we know that flares can really take a toll on us. So it’s looking at how we look after ourselves. But my question to you, Katy, is what do you think looking after yourself really means?

Katy: That’s a big question. It’s a big question. Well, it’s looking after everything, isn’t it? It’s looking after your general wellbeing. It’s looking after your mental health. It’s looking after your physical health, your nutrition, your fitness, your heart health. like when you think of a human, every bit of it, whether it’s your hair, your skin, your teeth, all of you.

Debbie: Yeah, I agree. There is just so much to think about. And I also think it’s your social health as well, your social life, because, you know, as humans, we like to be with other people as a species.

Katy: Yeah, well, some of us anyway, not everybody.

Debbie: Some of us. We can pick and choose, but it’s having that community, I think, that is really, really key. So, you went to a spa weekend, probably about a month ago now, and you’re going to report back, how was that and did that help you?

Katy: I did. Yeah. Yeah, I love a spa weekend. I just wish they weren’t as expensive as they quite often can be.

Debbie: They are so expensive. Yeah.

Katy: And so, I did two spas in the same weekend. So, it’s a spa we’ve been going to for a little while. It’s quite small. It was a three-hour session. We didn’t have any treatments or anything like that at this one. We just chilled in the hot pool, went in a couple of saunas, steam rooms. And it was really, really lovely just to have that of quality time, a group of four women of similar age. Two of them I’ve known since I was at nursery. One of them moved to where we lived when I was about 12. So we’ve known each other for absolutely years. We’ve been through breakups, makeups, marriages, divorces, children, like everything. So, really lovely to catch up with them. then the next day I went to a spa with my university friends. So, this was quite a posh one that we’d got on a voucher. One of my friends has actually got pots. So, she has to be really, really careful with things like saunas, steam rooms. She can’t go in because her heart rate will fluctuate and she’ll have loads of problems. So, we had to be quite careful of the temperature of the things that we were going into. but I had a massage on the second day and oh my God, it was a deep tissue massage. So that’s not for everybody, but it’s because they can really hurt.

Debbie: No, because they can hurt.

Katy: So, I’d asked the spa if they did sports massages, which again are not relaxing in the slightest, but it’s more sort of how you feel 24 hours after. And if I was flaring, I would never ever, ever, get a deep tissue massage, if they weren’t going to touch the parts that were hurting. I can only do them now that I’m in medical remission. But it was just so nice for someone to work through the sort of muscles that are a bit tight and just really get into the weeds of your body and make it feel a little bit better. I mean, I love a massage. just can’t just don’t get them done as much as I would ideally like to because obviously, they cost quite a bit. Have you had massages?

Debbie: I have. I did actually have some when I was on holiday. And actually, I did have a full body massage. wasn’t a deep tissue one. And I am very clear when I do have them. They should go through a form with you to say, have you got any illnesses or anything I need to be aware of? And if you are flaring, because I must admit my elbows are never that great. And if they go near them, even if my husband tries to touch my elbows, would literally flinch. So you have to be so clear on where you’re hurting because you, they, I won’t let people touch my feet anyway.

Katy: Yes. I won’t let them touch my feet because I just don’t.

Debbie: It just tickles.

Katy: I used to love my feet being tickled by my siblings when I was a child. I used to sit there and make my brother and sister tickle my feet.

Debbie: Sibling abuse My God. No, I’m the opposite. I hate people touching my feet. yeah, can’t get that vision out my head. But yeah, so I am getting back to what we were talking about. I am just very clear on that. if they, it’s sometimes, if it’s not flaring or anything and it hurts, I do just say, actually that can you stop that bit? Can you move somewhere else? Because that’s hard. You just have to empower yourself and advocate for yourself when you have these done. But I really do think they help because it for me, I think that they increase the blood flow into your muscles. And obviously we know that to having better muscles and stronger muscles can really help your joints because they’re the ones that protect your joints as well. So, I feel that really does help me. I like you, I love a massage, especially on my back. it’s great. But then I have to be very careful about my lower back as well when they go quite low. So again, it’s just being very clear on what…

Katy: Yes. It’s just been really transparent and just sort of saying I’d prefer, like, don’t, like, I don’t really let them, depends how I’m feeling, but I don’t really let them touch my hands and my wrists and my feet and my ankles. I try and get them to avoid. Sometimes I’ll say try and I’ll tell you if I don’t want you to.

Debbie: Yes, so again, it is that two-way conversation, just being very open with everyone. So, I’m glad you enjoyed your spa weekend, though. It does sound amazing. I’m sure it does. My holiday seems like years ago, but it was only what, a months ago? can’t, even now, I can’t remember. The year does seem to have gone very, very quickly.

Katy: Yes, it was very nice. Feels so long ago though now.

Debbie: And I also think looking after ourselves is having that medical routine as well. I have slipped a few times when I’m well and I forget. Other things just take over, but it is having that medical routine is so important.

Katy: How good are you with getting your blood tests done to get your prescriptions? Because I’m horrendous So I saw that my prescription was due on a particular delivery company’s app and it said it was in with the hospital, the prescription. I know at this time of year, I need to make sure my bloods are updated. But nobody from the hospital tells me. And I’ll refer back to our digital genius episode where I was talking about my hospital had all gone digital in the summer and my nurse had no idea how the system worked. It was hilarious. But finally, instead of them having to post me a letter with my blood forms, they can now, as long as I go to the hospital bloods, phlebotomy, can never say that word.

They can just send me a code that I give them, which then they can then print off the form within the department. So it’s so much quicker than having to wait for the blood letter to come. But then something really weird, I used to be able to book my blood tests online. for, it’s bizarre. I now have to ring up and get an automated service to then book my blood test. I mean, it’s pretty quick. I called up yesterday and I’ve got one next Wednesday. like within…six days, which is amazing. But I just thought it was a really weird change.

Debbie: seems very a backward step for me

Katy: But then the same digital system that I used to book through sends me the reminder. So I don’t understand, unless I’ve completely misinterpreted it, but when I went online to book, the hospital didn’t come up. All the other local places came up, but not the hospital where I can use this code. So it’s really weird.

Debbie: Right. That’s, that sounds very confusing.

Katy: But it’s great that I don’t have to wait for it in the post anymore. So, I’m not, I’m not moaning. I’m just moaning this tiny bit.

Debbie: But I’m just thinking, no young person phones, so they would never phone up a number.

Katy: It’s awful because you have to go, listen to option one, option two to book, option three. Yeah.

Debbie: That drives me insane. Does it say your call is important to us? Gosh because I must admit when I do it online it then brings up dates and times so I can then choose because then if they then tell me a time it might not work for me.

Katy: Yeah. Well, this told me a time and then no, and then, you can either accept the time it says or decline it and wait for the next option to come up. So, you could be on the phone for about three months. So I just, I just accepted it and went, I’ll have to deal with my day just to make it work because I can’t be bothered to sit waiting for all the options. Because what if you don’t choose an option, then all the next options you can’t do. So you think, I’ll reorganize my diary. You probably have to hang up and ring back up anyway.

Debbie: Right, very bizarre, very bizarre. But getting back to your original question, I never know where my bloods are due. I do get a letter sent to me from my hospital.

Katy: Oh do you because I get nothing. Yeah.

Debbie: Well, they don’t do my prescription unless I’ve had my blood test.

Katy: Well no, mine don’t, but they don’t seem to tell me I need to get a blood test. I have to, unless I just pre-empt it before they get in touch with me.

Debbie: okay. Yeah, because I can’t actually remember the last time I did have one. I think my appointment was in March. I must have had one around then. But mine is online booking. And I do think that’s something because you can then see what dates and times work for you. But it’s very bizarre that I think all hospitals are so, so different. be, you know, be great to know what other people go through as well. actually how easy is it for you to get your blood tests done? You know, and also everything that goes along with that as well, like then having to get public transport and what if you know the buses aren’t working that day or you know don’t get me started on the parking at mine.

Katy: Oh, and the parking at my hospital is horrendous. So, I would prefer, sometimes I cycle actually, depending on how much time I’ve got. But it’s quite a big hill, so it’s not my favourite. it’s only a 10-minute drive to the hospital for me, which is really great. Or like 20, 25 minute cycle. But the bus can take 45 minutes.

Debbie: Yeah, because they go around the houses, don’t they?

Katy: I could walk quicker than getting the bus. Well, maybe not.

Debbie: My hospital is also on a hill, the car park is on a very, very steep gradient. is stupid. And the top of the hospital is even more of a hill. So, I remember being pregnant and trying to get out the car. I couldn’t get out the car because my tummy was too big. So, my husband had to pull back and let me out and then try to like penguin waddle up this hill. And it is horrendous. Why? They designed them that way, I have no idea. But they’ve now got a multi-storey car park, don’t get me started on the pricing of hospital car parks, either the charges.

Katy: I mean this is, it’s awful. I just, I think it’s a criminal offence.

Debbie: Having a health condition is bad enough, let alone the costing that goes along with that. That just drives me mad. Im a bit like you, I don’t live that far, but it is walking up a massive hill even to get there. I try and ask someone to give me a lift.

Katy: Yeah. And then people who live in rural areas, it must be absolute madness.

Debbie: Yeah, it really must. I think people don’t realise that that’s a huge impact on us.

Katy: Doesn’t help us look after our own health.

Debbie: Exactly, getting back to what we’re talking about completely. It really doesn’t. And I must admit, this is why I’m on, I think I mentioned this work stream that I’m on all about blood tests, because it is, that ripple effect. It’s not just one blood test, there’s a form off you go. It’s really not. There’s so much that goes along with that.

Katy: Well, no, it is remembering and it can be quite stressful if I’d like got only two injections, so a month and I knew I needed to get my bloods done, then get the results and sign off the prescription and organise a delivery. It can be quite stressful, you get quite stressed and it doesn’t help the whole looking after yourself.

Debbie: It doesn’t. And when one of the first deliveries companies that I was using, that was a nightmare because also my daughter had medication as well and they couldn’t work out that there’s two people having two different medications at the same address. And then they never then told me like your delivery is due or which delivery, which, which they never then said which person it relates to.

So then I had to phone up and I know one time it cost me a fortune to phone up. I think they’ve now changed it to hopefully a free phone number, but I was just on the phone. It cost me like eight quid and I was livid. And it’s just like, I’m just trying to sort out my medication Which one is, just tell me who it’s for and then I’ll be able to give you the answers. But I can’t do that on the app because again, it doesn’t say. So yeah, really frustrating. And again, it’s just the extra stress that goes along with trying to look after yourself, trying to cope with your disease as well.

Katy: there’s an extra cost. There is a cost on, whether it’s paying for transport, travel, all those things. Equally, if you pay for your prescriptions, it’s having a health condition tax essentially.

Debbie: It is, my previous GP, was lovely. He tried everything he could to try and see if I can get prescriptions for free. And there was no way I could. And it’s just like, I’m so sorry, because, know, I was struggling. I’ll be honest, at that time, I was struggling for money. And I think my daughter was getting diagnosed as well. Obviously, for children, their prescriptions are free. But it was just so much going on. And then also trying to heat your house as well in the winter when it gets really cold and trying to eat healthily. It is s all of that.

Katy: And we all know healthy food is more expensive. So, it can be really tricky for anyone that is struggling for money. Actually, to eat healthy and look after yourself is really, really difficult.

Debbie: Yeah, if you start from scratch, which I love to do, I generally do, when I cook from scratch, but then when I can’t hold a knife and I can’t cut up vegetables, and I can’t buy those that are pre-cut are so much more expensive. And then I try to hold then a frying pan is when you can just whack stuff in the oven, cheap and cheerful as long as you get fed, it’s, it is that balancing act. And I don’t think people realize actually how hard it can be.

Katy: And thinking about food, do you batch cook to help with those times when you are struggling to hold a knife, hold a pan?

Debbie: No, but I’d always think I should do. Yeah, I’ve really…

Katy: No, I don’t. I’m terrible. I should do. And quite often I prefer the food when it’s reheated like the next day because it’s all soaked in a bit more. So, things like stews, Bolognese, that kind of stuff, I much prefer it the next day. I did do it. think when I was pregnant, I batch cooked and does just make your life so much easier because then you are eating fresh and healthy food without.

Debbie: Yeah, I don’t batch cook. It’s always been in my plan to just say there is emergency healthy food It’s just always a trying to plan your time to do that because it takes that much longer to batch cook and making sure that you have the right tupperware and things and room in your freezer as well. I don’t know what my freezer has in it, but I’m trying to go through it now again because we’re moving. But it’s just like, it’s just so easy to get filled. And when you’ve got teenagers as well, they’re like, I need something quick now. What have you got, mum? It’s like, I don’t know, just have a look. I did actually go through my cupboards and I found I had food in my cupboards expired in 2020.

Katy: Don’t worry. We found stuff from 2017 that’s expired, especially things like herbs. I mean, I don’t think they really go off. So I would just, I just eat them.

Debbie: Ha! I did see something on a TV show saying they do, it’s just they don’t have the strength in it that they did at the time.

Katy:  So, herbs, honestly, we found some really old ones. Like, you know, if you planned a recipe, so you’ve like run out to find exactly what you need and then you never use this herb again in your life because it was just for this one.

Debbie: That you’ve used like half a teaspoon.

Katy: Yeah. Because that can be the problem as well. Sometimes it’s the expense of those extra little things, which I sometimes just don’t bother with. I’m like, what does it really add? I’m sure I could like put some, can make a switch and it might not taste the same, but do I really care?

Debbie: but then I don’t generally follow recipes. My daughter and her boyfriend do. They’re going through the other day like, Mum, we got this, this, this. like, I don’t know, go and have a look. Is there a specific cook that you like or a chef that you follow?

Katy: No, but we have got quite a lot of recipe books and I am going to dig out a slow cooker, the slow cooker one, because I just do the same thing all the time, which is where I just lob stuff in, and I think it tastes all right. But I would quite like to expand my repertoire of slow cooking.

Debbie: Yeah, I think I just like to expand my repertoire of just cooking because I must admit I just find I just need

Katy: Yeah, I just do like, I’m like Bolognese, slow cooker, roast. That’s pretty, yeah, pretty much that’s it.

Debbie: Yep, stir fry. that’s about it. Yes, maybe we should go on a cookery course because I think also those things are good for us as well. You know, it’s but then I do try to think there should be things that we can do that don’t cost money. Like going out in the fresh air going for a walk. And I am actually now co-chair of the Teapot Trust, which is an art therapy. Charity based in Scotland and on their website, I’ll put these links in the show notes, there are things that you can do yourself like colouring, drawing, things like that. I’m such a rubbish drawer, I can’t even draw a dog, I can’t even draw a cat, but it’s taking us…

Katy: me too. Shall I show you my masterpiece that I did with work when we went to Newcastle?

Debbie: I’m sorry for people on Spotify, go and have a look on YouTube, this is why we are now on YouTube as well. beautiful. Is that a bottle of wine on a beach? With sticks or is that flowers?

Katy: Yeah. Was flowers, there was a vase, but on a beach with a sunset, I mean, it was beautiful. know? Yeah.

Debbie: okay. So you’re just trying to explain for people. Right, so Katy had this very big bottle of wine just on a beach. The  next Picasso is what I’d say

Katy: But honestly, that was so much fun as a work social because some people’s were actually incredible, but the majority of us, that was sort of the standard.

Debbie: Well, that’s the thing. Not everyone is a good artist. You know, I think you have natural talent there and mine is just utterly rubbish. But going and doing these things, I must admit, even through lockdowns, my daughter had some colouring books and we did crystal art as well. And again, I’ll share these photos on Insta. It was so therapeutic because it just takes you…

Katy: Well, my son’s really just got into origami. So, we’re just watching YouTube. I mean, I am dreadful, but we’ve been watching like YouTube videos and my husband has made a parrot, a rabbit and I can’t think what the animal is called. Anyway, something else. So, we’ve just got origami going on around our house at the moment.

Debbie: Along with post-it notes, sounds like you’re… But

Katy: Sorry trees, sorry trees.

Debbie: As long you recycle them afterwards, it’s fine. But yes, I think there are loads of things that you can do to look after yourself. It is not just that physical side, it’s that mental side, emotional side, and doing things in a community as well, whether that’s friends, whether that’s, you know, listening to us and being more involved on social media with us and in those conversations that we’re having. It is just making sure that you put yourself first. And I think this is what for me, looking after yourself that self-respect.

Katy: Yeah, yeah. And it’s like what everybody says, you need to put your own oxygen mask on before helping anybody else because you can’t help other people if you’re not feeling well yourself.

Debbie: Perfectly said I completely agree and I think that follows on really nicely from what we were talking about last week having flares don’t feel bad about it don’t feel guilty listen to your body and also give yourself that self-respect and everything that goes along with that it’s been a great episode I can’t believe this is our 35th episode Katy I know please do go back and listen to all the others as well some are on YouTube but the rest out there all on Spotify and all through our website, Apple Play and Amazon Music as well. But please do rate and follow the podcast from wherever you get the podcast from. We are on social media. Please do like, follow and comment. We wanna keep this conversation going, especially what do you do to look after yourself? We’d love to hear from you. If you want your story told, please get in touch. We’d love to have your blog and to have your story heard as well. So go to our website, it is inflammatoryarthritis.org. And are on social media we are on BlueSky, Instagram, LinkedIn and Facebook and until next week Katy it’s goodbye

Katy: Goodbye.

How to look after yourself with inflammatory arthritis?

In this heartfelt and relatable episode, Debbie and Katy dive into what “looking after yourself” really means when you live with inflammatory arthritis or other long-term conditions. From self-care routines to hospital frustrations, healthy eating challenges to spa days and colouring therapy, the hosts share their honest experiences of balancing physical, mental, and emotional wellbeing.

They chat about everything from blue post-it notes and children’s times tables to deep-tissue massages, blood test bureaucracy, hospital parking nightmares, and the realities of trying to cook healthy meals when your joints won’t cooperate. The conversation circles back to the importance of self-respect, community, and remembering to put on your own oxygen mask first.

Key Takeaways:

• Self-care isn’t just physical, it’s mental, emotional, and social too.
• How self-care can mean different things, from spa days to colouring books
• Why community and friendship are vital parts of health
• Listen to your body and don’t feel guilty for slowing down.
• Advocate for yourself, whether with a massage therapist or a hospital system.
• Health management comes with invisible costs that deserve recognition.
• Small joys: origami, art therapy, and the power of simple creativity

Resources & Links Mentioned:

• Teapot Trust – Art therapy charity supporting children and young people: teapot-trust.org
• Inflammatory Arthritis UK – Resources, blogs, and stories: inflammatoryarthritis.org

Listen & Connect:

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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/