Getting Started with Chronic Illness Management | The Chronic Illness Management Programme: Section 1

In Section 1 of our Chronic Illness Management programme we explore the first steps you could take in managing your chronic illness. Whether you have a new diagnosis, a change in symptoms or just want to better manage your chronic illness this episode is for you. It is the first step in our 9 section programme designed to empower chronically ill people to manage their health and live fulfilling lives. It was created in partnership by Elizabeth Curtis and Occupational Therapist, Jo Southall.

🏘️ You can join our discord server to chat to others taking the programme here: https://discord.gg/CQJMmgYPVY.

📰 For summaries of the programme sections visit and subscribe to our newsletter: http://alivewithchronicillness.substack.com/.

If you found this programme helpful and you would like to donate to the project and help fund current and future resources you can do so here: buymeacoffee.com/alivewithchronicillness

To learn more about Jo and her work visit her website: https://jboccupationaltherapy.co.uk/.

Thank you to Main Squeeze for sponsoring this episode. You can learn more about their products here: https://mainsqueezeworld.com/.

Use code ALIVEWITH15 for 15% off.

Please note this Podcast is provided for general information only, it does not constitute as medical or professional advice. The views expressed by guests on this Podcast are their own, their inclusion in this Podcast is not an endorsement.

Music by audionautix.com

[Image des[Image description: At the top, large turquoise text reads: “Produced in partnership with Occupational Therapist Jo Southall.” On the left side is a simple illustration of a wheelchair in pastel blue, yellow, and pink tones. To the right, the title appears in large text: “Alive with Chronic Illness – The Chronic Illness Management Programme.” The words “Alive with Chronic Illness” are in turquoise, while the programme title is in bold black capital letters. Below the title is a turquoise play button icon next to a stylised audio waveform. Near the bottom is a circular “Alive with Chronic Illness” logo containing a photograph of trees viewed from below against a blue sky. A blue sky image spans the lower edge of the graphic.]

Transcript

Elizabeth 

Welcome to section one of the Chronic Illness Management Program. In this section, we explore getting started with a new diagnosis, a change in symptoms, and the first steps you could take to improve your overall health management. This lived experience-informed program has been designed in partnership by Elizabeth Curtis and occupational therapist Joe Southall. It is provided for general information only and does not constitute as medical or professional advice. Thank you to our sponsor, Main Squeeze, for helping make this episode possible. Main Squeeze creates stylish compression socks designed for people who want support, comfort and everyday wearability. Without the clinical feel, compression wear often has. I especially liked their focus on creating products that feel more personal and wearable for people navigating chronic illness, fatigue and circulation problems. So I think the first thing that for me, when I have any kind of health change, is I like to re-evaluate my life and I like to think about the different categories of my life, like my work, my studies, my hobbies, my friendships and relationships. All these things that I'm doing, I like to re-evaluate them to think about my capacity because that kind of comes into everything for me. and also the impact that any kind of health changes might have on those and the fulfillment that I get from them. So maybe if I'm going to be suffering from more fatigue, I want to be mindful that might actually impact my social interactions and my hobbies and the things that really fill up my cup, as well as impacting the things that might take more energy but are meaningful to me, like working. So I like to sort of start by kind of reevaluating that, just having a look at it, like what's going on? What am I worried about? Is there anything that maybe I could reduce right now so I can get myself onto what I would say is like a balance for me? What about you, Jo? 

Jo 

I definitely think that's one of my two first steps. So looking at what is a high priority for me. I actually, I often get my placement students to do this as well. What do you want your life to look like? So what are you aiming for? In an ideal world, how much work are you doing? Are you doing work that you enjoy that's maybe really well paid so you haven't gotta do much of it? Or are you the sort of person that likes to be busy and wants to work full-time? For me, I get bored quite easily. I'm a doer and I'm quite a people person. So I like to be involved with a lot of different things, which means that I'm involved with a lot of different things part-time. And that does mean prioritising for when things are maybe a little bit busier. So I as a volunteer do hedgehog rehabilitation and critical care. We have certain times of year that are really, really busy. So early summer and late autumn are our busy periods for that. And I know that having done it for a few years, I've spotted that pattern. What it then means is that if I know I'm going to be busy with one aspect of my life, I need to scale other things back to free up capacity for that essentially. So when I'm choosing modules I'm going to study or things I'm going to look into or projects for work, I won't do them during when I think we're going to be at our most busy. So for me, like I want to be able to do all the things, but some things are not sensible at certain times of year, as an example. I know as well that I'm quite severely heat intolerant. So starting any kind of new project, new rehabilitation approach, new treatment, new medication during the height of summer, not a good idea because I'm already like really pushing my limits to just kind of exist. So for me, that's a really important thing is that prioritization and we might want to do a new thing and you absolutely should try new things, but are you starting this new thing at a sensible time? The other thing I look into is actually understanding your own body. So for a lot of people who are chronically ill, particularly those of us who waited a long time for diagnosis, we get really, really good at ignoring all sensory input. If you can ignore a symptom or put it at the back of your mind or push through it, you will. And that's kind of what happens naturally if you have a condition where people maybe don't believe you or you don't have any decent treatment options because what else are you supposed to do? The downside to that is that if you ignore some symptoms, chronic pain is a good example. If you've got like a baseline level of chattering on in the background kind of pain and you ignore that, it's kind of sort of okay in certain situations. Ignoring acute illness is not really a good idea. And ignoring things like headaches isn't a good idea because you will have to stop and deal with it eventually. And when you have to deal with it after you've ignored it for four hours, it's worse, like a lot worse. So actually tuning back in and understanding what your body is doing at the moment can be a really useful thing. And particularly for people who maybe have not so great interoception or body awareness, smart monitoring can be a really useful thing to do. For me, I need data about what my body is up to. I can't just rely on how I feel day-to-day because there are too many factors influencing that. So things like tracking my heart rate variability to predict fatigue flare ups can be a good thing. Having a look at whether I'm sleeping well or not. Things like looking at my medication management apps to see how many PRM painkillers I'm taking as an example. If I'm taking a lot more than normal, well then I might need to scale something back. So that kind of data analysis type stuff gives me a lot of information about how well I'm actually coping with things and it's often a bit more accurate than just how are you feeling day-to-day. 

Elizabeth 

Yeah, and I think we're quite similar there because I like data as well. Because that's why I tend to go the analytical route, like troubleshooting myself, like think of myself as like a car and I'm just like the mechanic trying to figure it out. And having that data, particularly there's so many apps isn't there that you can use. And I use a couple and it just sort of varies. And I think what helps me, particularly ones that give you a score, like an idea of your energy, is that it makes me think. And if I might feel, it can be like a double-edged sword because I don't want to feel like I need to have a bad energy score to feel validated and taking a rest day. And I can be mindful of that for myself because I know I have a tendency to push myself. But it does make me think, oh, actually, I am kind of low on energy and I don't feel very well today. And I need to think about what I can actually realistically do. And it just gives me that, it does give me validation. which again, I guess that is a double-edged sword, but it has been really helpful for me just to see that and also to sort of look at my weeks. And this is probably something we'll talk on in the next episode a bit more with pacing. But I like to have a color-coded calendar so I can see where I'm expending energy. I can see my social events, I can see my work events, my studies, and I can get this idea just from looking at it of like, oh, I'm spending a lot of time at work this week. Am I making sure that I'm getting enough downtime to kind of counteract that and being able to see that data? And And if I've had a bad week or I'm having a flare, I can look back and think, OK, well, that week I did lots of socializing. Maybe that was quite tiring for me. Or I did lots of work. Maybe that was tiring. And I can start to put those things together based on the information that's there. Because I find it really hard to, I guess, in the moment, just reflect on what I've been doing and remember, oh, what could have triggered this flare? When I start looking at the data alongside it, it's helped me identify patterns I don't think I would have otherwise. 

Jo 

I definitely agree with that and I feel very much the same. So when I first developed POTS, I would wear a heart rate monitor quite a lot of the time and I would look at it actively quite a lot of the time and I'd set it to set off like alarms and alerts. And what that helped me do was realise which of my daily activities was triggering my POTS and causing me to have that crash later on during the day. So I would quite often get up and get dressed and then sometimes I'd be okay and other times I would have a real crash after getting up and dressed. And it wasn't until I started doing my morning routine with heart rate monitoring that I realised it was when I was French plaiting my hair stood up because I had my arms above my head and I was stood up. That was too much and every time I French plaited my hair I would crash afterwards. And spotting that pattern then allowed me to adapt that activity. So now if I need to French plait my hair I do it sat on the floor with my legs crossed. for added kind of compression sort of thing. So since I modified that, getting up and dressed has been a lot easier. So I think spotting those patterns, particularly if you've got a lot of symptoms going on and you're busy, maybe you've got kids, maybe you've got a job, maybe you've got pets, maybe you've got all kinds of other stuff going on, it's too much. It's like the medical information equivalent of sensory overload. You need something to kind of cut through that and help you be a little bit more analytical about it. And then when what the problem is, as an example, French planting your hair, you can work out what to do about it. 

Elizabeth 

Yeah, when you've got that knowledge, you can, like you said there, make those adaptions so you can still do the things you want to do, but you can do it in a way that's going to take less from you. 

Jo 

Yeah. Or if you can't do it in a way that's going to take less from you, at the very least, you can budget more energy for it. So that when you have that crash, it was planned for rather than it being something that's completely disruptive. 

Elizabeth 

Yeah, and I think like apps and things like that and heart rate monitors, they can be really handy at all stages, but especially when you're trying to get to grips with a new illness and you're trying to understand it better, it just gives you that baseline data that then you can build healthy, sustainable habits on. Because I find that probably when I've had a change in health is when I'll reach back to those apps. I might check in on them every now and then, but I over time get a pretty good idea of how best to pace my energy. It's never perfect and I never felt like I've got it all together and all running smoothly just because I don't think that's realistic or achievable really. So but I don't really aim for perfect I aim for like what I feel. that I'm living a life that feels sustainable and I don't feel overwhelmed by not thinking I've got enough energy to do the basic things I need to do. That's what my kind of aim is of how do I feel? Am I happy with how my pacing is right now? And if I'm happy with it, even if it doesn't feel perfect, then I keep going. And when I feel like I need to make changes, then I'll revisit things and change things up. And I think that's where the apps come in handy because you can look at that information. And a lot of them you don't have to actually do anything with. They'll just work in the background. So you don't necessarily have to interact with them on a database. You can come back to them in a month and it will have compiled that data already for you and you can still have that kind of overview. 

Jo 

Yeah, I completely agree. And if you do ever find a disabled person who self-manages perfectly, I would love to meet them because I agree. I think it's, we all put a lot of pressure on ourselves to do things perfectly, but there is no perfect, particularly not if you've got a variable condition because you can get it right one day, do exactly the same thing the next day and it's wrong. on that time. So I think it's a lot more complex than many healthcare professionals would lead us to believe. Yeah, self-management is hard work and it is a never-ending series of like progress updates and adjustments depending on what we're doing, how we're feeling, what the weather's like. You know, when was the last time you had a cold? Have you just changed things since then? So there are so many variables that it's almost impossible to get it right, at least you know, a decent percentage of the time. So yeah, like you, I aim for progress and I aim for sustainability. And I factor in times to review so that if I'm getting it wrong, I'm not getting it wrong for too long. I'm not gonna be really burning myself out because I've stopped and I've reviewed that. So I do a monthly kind of health reflection type thing where I just sit and think about what went well this month, what went badly, what can I change for next month? But I think that's particularly important at seasonal changes because so many people do have symptoms that vary depending on weather, air pressure, temperature, that kind of thing. In the same way that a lot of people swap out their like summer and winter wardrobes, I swap out my summer and winter coping strategies. So sitting and actually having a think about that and getting myself in the right mindset to be managing things differently is really important for me. Otherwise what I will tend to do is reach for the wrong coping strategies and end up making myself more unwell because I'm not thinking about it. And I think self-management works best when it's at least a little bit automatic. Otherwise it's just too much stuff to hold in your brain at any one time. So if you can get to the point where you will automatically kind of muscle memory type thing, fall into the right coping strategies, it takes a lot of that cognitive load away and frees up your brain for things that you actually enjoy doing or need to get done. So sitting and consciously putting myself in, okay, I'm in winter mode now and it will change what I'm wearing and it will change, you know, whether I reach for ice or heat packs or it will change for whether I'm, you know, looking at like painkillers or anti-inflammatories as an example or whether I'm going for a bath or whether I'm doing a gentle stretching session or whether it's both. These things will change seasonally and getting myself in the mindset to do that helps me cope with those changes. But I think that all takes time. So if it's your first kind of first couple of years with a diagnosis, that won't happen naturally. There will be a process where you have to gradually kind of experiment with coping strategies. Is it working better? Is it working worse? What was good? What was bad? Keep notes on that. Keep diaries, write yourself a little plan for when you have flare ups so that gradually over time, the experience you gain from just existing in your current setup helps you to refine it. And it's not a quick process. I don't think it's a process anyone ever completely finishes either. Just when I think I've got the hang of self-management, something changes and I've got to come up with a new solution. So it is, and I'm not saying that because it's all doom and gloom, you're going to be doing this for the rest of your life kind of thing. But if you haven't quite got it nailed after six months of living with a diagnosis, Don't worry, you're not supposed to have it nailed at this point. Like, live with it, exists as long as you're making progress, you're heading in the right direction, great. If you're not making progress and you're not heading in the right direction, we need to review what support you're getting with that. And it may be that you've not got the right team around you because it does like take a village kind of thing. You need the right people. Self-management is not meant to be done completely on your own. It's meant to be Pulled together with a team of people it's meant to be tinkered with it's meant to be pulled up and then for the most part you look after yourself as much as is safe. And at that point we then go okay well you know what can you self manage and what is time for a GP appointment. So self management skills aren't designed to make us like isolationist kind of, you know, solo survivor types but. if you know what you can cope with and what you can't, when you get to something that you can't and you've already got a plan for it, great, the plan comes into effect, off we go. 

Elizabeth 

Yeah, it really is that whole like knowledge is power, but also giving yourself grace. And I think a thing that comes up a lot when I speak to people about living with chronic illness is feelings of shame and guilt and like they're not doing a good enough job or you should have tried harder or you should restrict yourself more. And I think I think those feelings around shame and guilt are things that a lot of us feel, if not most of us, because it's a really challenging and it can be, there does tend to be a culture sometimes of blame that people think, oh, what happened? Like, what did you do wrong? If you're, if you have enough flare up and you're feeling quite, you know, run down and you maybe you're bed bound, you might think, well, how did I get in this position? What did I do? But a lot of the time there are things we can do that make our conditions worse, absolutely. But the key element of it and the thing that I always come back to is developing a chronic illness is not somebody's fault. It's not like a test. It's nothing like that. It's a medical thing that has happened. It's there is, you know, it's nothing to do with you personally. It's not something to be ashamed of. It's not something to feel guilty about. And most people do develop health conditions at some point in their life. And it's very difficult, I think, when you're getting tired or something and you're grappling maybe with those feelings. and maybe not feeling like you can talk about it. And then needing that village, like you said, it's so important to have those people around you to make you feel supported and seen and heard, but sometimes not always actually feeling like you can reach out for help and say, actually, I am really struggling with this, particularly if you've gone in, you've got your diagnosis and maybe you've just been handed a leaflet and sent on your way to try and figure it out on your own. It can feel really overwhelming and sometimes you can sort of think, right, I just can't do this and I don't know where to go next. 

Jo 

I completely agree. Like it's not a blame thing, it's not a fault thing. But equally, even if you are 100% to blame for the situation that you've ended up in, that does not mean you don't deserve appropriate, empathetic, effective healthcare. Everyone does, do you know? And I think a lot of us do feel like, oh, I'm being a past, I've sent the doctor five times this month, whatever. Every healthcare professional, every good healthcare professional ever in any country all the way around the world would rather you were safe than sorry. Please, please access healthcare if you need it. Go, speak to somebody, reach out, do something. I think there's this attitude that I've spotted among the people I work with and I recognise it in myself a lot as well. Less so now because I've started calling myself out on it. The attitude is to self-manage things that are inherently not self-manageable. So there's this kind of prevailing belief that we should be able to fix everything with determination, stubbornness and a positive attitude. And logically, we know that's ridiculous attitude to have and yet emotionally we all fall back to that during tough times. The amount of times I've spoken to people who are trying to self-manage things that should not be self-managed, they're supposed to be ICU managed. So I had a conversation with a client once about self-managing sepsis and I'm like, no, this is a medical emergency. Logically and emotionally, we feel about that in two different ways. So logically, this person knew that the early symptoms of sepsis did require an emergency trip to A&E very, very quickly. Emotionally, it was too close to a past hospital admission. It felt like a failure. It felt like it was too difficult and too much hassle and they were going to go back again and it was going to be disruptive all over again. I think one of the things I often get people to do is to flip that narrative around. So if I was the one telling you that I didn't want to see a GP because I feel like all of my symptoms are my own fault and I should be trying harder and if I was just more determined, I wouldn't need painkillers, that kind of thing. What would your advice be to a friend saying that to you? What would your advice be if I was saying that to you? And then you take that advice yourself because we're often so much better at looking after other people than we are at looking after ourselves. So if you can treat yourself as a case study or imagine yourself as a friend rather than your own internal narrative, I think flipping that around can be a really helpful way to recognise when our thought processes maybe aren't the most helpful. 

Elizabeth 

Yeah, absolutely. And I think that when you flip it around, it gives you that self-compassion because it is hard to have self-compassion sometimes. It is really difficult, particularly in cases where you definitely need to be going to hospital. And it is hard when you feel like, oh, I've been there a lot, maybe I don't want to be a problem. But the reality is you need healthcare and you have a right to access healthcare. And I think what you were saying there about doctors would rather you go in and then get checked and it's nothing rather than leave it and it is something. I think that makes a lot of difference. And I remember actually just during a healthcare checkup, I was given a leaflet just about like breast checking for breast cancer just because they recommend that you do it regularly. And I said, I always wonder like, what if I think there's a problem, but I'm not 100% sure. And she said, we don't mind. You can come in, you can come in every week if you need to. We'd rather check and it's nothing. then you think, I'm not sure, so I'm not going to bother them. And then it is something. And that really reassured me that if I was ever in a position where I was like, I don't know, I could go in and that they would rather just, they'd rather confirm it's nothing than have to come in a few months later, maybe when it gets worse and it is something. And I think that's the good thing about, like you said, good healthcare and good doctors, they would rather just be able to reassure you and just give you that and make sure that you feel safe coming in and getting it checked rather than it being left. 

Jo 

Yeah. Proactive self-management, proactive treatment, proactive intervention is almost always more effective than reactive. So one of the other things I would encourage people to do is to have kind of like a healthcare prepper attitude where if your diagnosis means that you are likely to experience a certain thing, but you haven't yet, plan for that. Have a plan in place, know who you're supposed to contact, who you're supposed to talk to, what you're supposed to do when that happens. And then when it happens and you're emotionally a little bit of a mess because a new scary thing is occurring, you don't then also have to come up with a plan and make 5 phone calls and take time off work because you know what you're supposed to do in that situation. And I think having a routine to follow, having steps, having a logical plan laid out can be really helpful emotionally in dealing with things that are scary or upsetting or both. Particularly if the scary, upsetting thing comes with large amounts of pain or brain fog, having a plan in place early is a really good thing to do. And I know there is a little bit of an attitude of, oh, well, don't think about that because it might not happen, but it might. And if it's going to happen at some point, I would rather be prepared for it. So I think that attitude of being told you're catastrophizing type thing. I am catastrophizing, but in a useful way. I have looked at all the things that might conceivably go wrong and I have written plans for them so that if they go wrong, it's not going to ruin my day. I know what to do. I don't have to panic about that. And that in and of itself, having a plan drastically reduces all the anxiety I have about health-related stuff. So I think that's sometimes a useful thing to do if you are sitting there going, what if, what if, make a plan for what if. 

Elizabeth 

Yeah, and then you've got that power back then to the anxieties of, OK, what if this happens? OK, yeah, what if this happens? What are we going to do? Because we can fix this, OK, we can do with this, we can manage this. Everything's manageable. And when you get that plan in place, you've got that and you're not having to be overwhelmed in the moment if it happens. And if it doesn't happen, well, then you've just learned how to plan for something and you can use those skills and those strategies for something else if you need to. 

Jo 

Yeah, definitely. 

Elizabeth 

So yeah, I think thinking about the topic of getting started when you've just sort of, I think the main things really are about planning, preparing knowledge, giving yourself grace, giving yourself compassion. knowing that it's going to take time and that perfect with pacing just doesn't happen. It doesn't exist. Perfect with healthcare, it just doesn't exist. So giving yourself grace that you do the best you can with what you have at the time and that's going to change over time. You're going to gain more knowledge, you're going to make mistakes, but you're going to get things right as well and you're going to move forward and even mistakes move you forward. And I think that's the main thing for me, like when I'm trying to readapt to anything, it's just okay, how do I plan for this now? Where am I going now? And when I see that plan, even if it's like five years, even if I think, okay, it'll take five years to be able to get to grips of this, I know that there's an end point of like, that's when I'm going to be at a good level with this. I know where I'm going. And then it gives me that freedom and autonomy back over myself. And it feels like it's less of my conditions controlling me. And it's more me saying, okay, this is what I have. This is what I'm going to do about it. 

Jo 

Yeah. There's a quote I always include in PowerPoints when I talk about self-management stuff. Whenever I talk about it, I get a slide specifically for this. And the quote's from Maya Angelou, and it's hoping for the best, prepared for the worst, unsurprised by anything in between. And that just perfectly sums up my attitude both personally and professionally to all things chronic illness. 

Elizabeth 

Yeah, that's amazing. And very, very true. I like that. I like that perspective on it. Well, we are coming to the end of the first episode. So I think the key takeaways that maybe if you're listening and you might want to think about what could I implement in my life is have a think about do you currently look at your life? Do you have an overview? Do you do a management plan once a month where you can kind of look at your health care? You can see what's going on? Is there some way that you could start to capture that information and start to gain an idea of what takes up your energy without it being too intensive on your day-to-day? And we will touch on pacing in the next episode in a bit more detail. But that is obviously a key thing that we'll think about. And if we want to take away anything from this, what actionable steps you can put in. I think that having that awareness and taking, I think data has been our biggest discussion here, isn't it? Think about ways that you might want to gain data on your health, whether that's a heart rate monitor that you could just wear and you don't have to even look at it. You can just have it there and it'll collect the data for you. Or whether it's maybe colour coded Google Calendar or other calendars exist. And you can then look at your weeks. You've got something to go off. 

Jo 

Yeah, data is definitely a really good thing. But equally being aware of where you want to be in five years time, like are you planning on changing jobs? Are you planning on having kids? Are you planning on getting a dog? Are you planning on going to university? Keeping all of that in mind as we go through the next few little bits will hopefully be a really kind of useful thing to do. 

Elizabeth 

Yeah, keeping that end goal in mind is the sort of inspiration of where you're going to be. But then you can tailor the steps that you take to get you to that place. Thank you so much for joining me today, Jo. 

Jo 

Thank you very much for having me. Looking forward to the next one. 

Elizabeth 

Me too. You can join in the conversation with others taking part in the programme using the link in the description. Likewise, if you're listening to this programme as it's released, you can sign up to receive the accompanying newsletter. But an archive of these newsletters will be available for those listening to the programme after it's been released. If you found this programme helpful, you can donate to the project via the link in the description. Thanks again to our sponsor Main Squeeze for supporting the program. You can shop their range of compression socks and get 15% off with the code ALIVEWITH15 at checkout. All the details are linked in the show notes. 

Please note this transcript is automatically generated and many contain errors.