Pacing in Practice (Part 1) | The Chronic Illness Management Programme: Section 4

In Section 4 of our Chronic Illness Management programme we use fictional real life inspired scenarios written by Jo's occupational therapy students to explore different ways people can implement pacing into their lives.

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Transcript

Elizabeth

In this section, we explore how pacing works in practice, working with fictional case studies created by Joe's occupational therapy students to provide tailored suggestions on how different people could implement pacing into their lives. This lived experience-informed programme 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 this section sponsor, Main Squeeze, for helping make this section possible. Main Squeeze felt like a particularly good fit for this episode, as many find compression wear, like the compression socks they sell, helpful in managing discomfort and fatigue. Compression wear can be an invaluable tool in daily energy and comfort management. You can use code ALIVEWITH15 to get 15% of their range. So this week we're going to be looking at pacing again. We're going to have a different lens on it. We're going to look at some scenarios that were made by your lovely OT students for us. And we're going to think about how pacing might be applicable to each of these individual fictional people. So we'll just dive straight in. So we've got our first scenario. A young person with fibromyalgia and postural orthostatic tachycardia syndrome wants to attend a late night music event with friends. but is worried about the length of the event and how it might impact their fatigue and pain levels, as well as lightheadedness in the hot, busy environment. So there's quite a lot of elements going on there. They've got fibromyalgia and POTS, and they're going to an event, and there's quite a few different elements of the events they're concerned about, fatigue and pain and lightheadedness. So do you have any initial thoughts on that one and what you would advise?

Jo

So I would advise breaking it down into three stages. So there's going to be the prep work, there's going to be the things you do on the day, and there's going to be your recovery period. So in your prep work, I would start thinking about things like offloading as much of your life as you can on the day. So that might be things like choosing your outfit in advance. What days of the week are you washing your hair? Have you batch cooked a load of food so you can live off microwave meals for three days afterwards? Have you got your tickets sorted? Have you got travel options sorted in advance? Who are you going with? Do they know what to do if you pass out or get so tachycardic you can't think straight? Have you got, you know, an emergency kit if you're taking medication or you're carrying salt or electrolytes with you? Is that all packed? Really do as much prep work as you possibly can ahead of time. So that on the day, you focus on rest, recovery, enjoying yourself, and that's it. You don't have to be dealing with the rest of your life at the same time.

Elizabeth

Yeah, so there's a lot in the prep work there in terms of thinking about pacing in advance of the event, pacing while you're there, pacing while you're after the event's over, and thinking, I suppose, about it's difficult, isn't it, with music events, because it can be so varied. And even with just the audio, they could be off on the night and there could be something wrong with the microphone and the pitch could be different and that can have an effect. And there's so many things you can't really control for. I think things like noise reducing headphones could be helpful in those situations. And again, just sort of feeding into the trying to prepare, like you said, as much as you can. And I guess as well, that awareness of there's going to be things that will come up and how to kind of manage those. And can you get away and take a break somewhere? And just is there that kind of option? And something I quite like to do if I go anywhere, if it's like an event or something like that, is I just make myself a little a little cosy space in the car. So I can just go back to the car and just be on my own, have some quiet time if I need to or whatever I need, but it's there. And then I know, or if I'm not feeling great or if it's a bit overwhelming, I'm just going to go back and I'm just going to sit in the car. I know it's there. Even if I don't use it, just the comfort of knowing there is a safe space and it's just there helps me a lot with the kind of mental element of feeling safe. And what I find that when I've got that safety, that really improves my confidence and I feel a lot more secure in environments that I wouldn't normally feel secure in.

Jo

Yeah. Yeah. And I think, you know, it's obviously it's difficult for non-drivers, but if you can have an emergency kit with you, which is the second part of the planning process, part of that needs to be geared towards if you need to make yourself a recovery space in the venue during the event, can you do that? So do you have... I quite often wear scarves, like quite a lot in winter. And part of the reason for that is that you can make a sling out of it if you need to. You can lay under it if you need to. You can use it as a pillow if you need to. You can lay it out on the floor and lay on it if you need to. So it's a really useful piece of kit for a lot of different scenarios. Likewise, people you're going with, or even just some random person at the venue. If I'm going to an event where there's a high risk of me having some kind of popsy episode, I will have a designated person whose job is to stop people trying to help. So a lot of the time, you know, if people see you laying on the floor, their intention is either let's get you up and somewhere safe, which is a problem because getting up is exactly the opposite from what you need, or let's bundle you up in an ambulance, which again is not necessarily what you need. So Yeah, I have people in different aspects of my life whose job is to run interference with the public, basically, so that I can get myself together in my own time. So that can be really useful. Emergency kits for things like meds, electrolytes, water. Do you know where the toilets are on the venue? Have you been to the venue? Have you booked accessible seating so you know you've got somewhere to sit down? And then if it's like a complex kind of multi-part thing, I would really start prioritising as well. So often for music events, there'll be like a couple of warm-up hacks, there'll be a couple of other bits. Which bits of the event are your top priority? So if you get there and realise, actually, I don't have the capacity to do this entire event, you don't have to then decide which bits you're going to cut. That's already been pre-decided. And it might be that you decide to skip one of the warm-up hacks. It might be that you leave early, so you get a head start against the car and you can leave quicker. It might be that you sit down for certain bits of the event or stand at different times if you want to dance maybe. But choose that in advance. And the same goes for holidays, actually, which bits of the holiday are like the high priority. I really will be heartbroken if I miss this bits. And which are the things that it would be kind of nice to do, but you're not going to cry about it if you don't get to. So yeah, the prioritisation stuff there is really important. From a fibro perspective, I would really be thinking about the fact that you at a music event may well get jostled quite a lot. and it may be that if you need to take preventative painkillers as an example, you might want to do that ahead of time, assuming that you're going to need it. Pain relief is most effective when taken early on in the pain situation where it's being used for. So often a lot of the times when people take like paracetamol for headaches, they'll go, oh, well, I took some, but it didn't do anything. Well, if you took it 4 hours after symptom onset, that's 3 1/2 hours too late. So it's kind of when you think about it that way, not really a surprise that the first dose doesn't quite, you know, do everything you hoped it would. So being proactive about that is sensible. a lot of venues will have access options in terms of quiet spaces or separate seating that you can use to be a little bit safer as well. I would also think about your own comfort. So comfy shoes, compression stockings, are you in? supportive clothing. Does your absolutely amazing, like, rock'n'roll outfit look fantastic, but not really allow you to sit down in it particularly comfortably? If so, maybe reevaluate your outfit plans. So yeah, hopefully that helps a little bit with the actual day stuff.

Elizabeth

Yeah, there's so many good tips there. I think it is like, it's all that thinking ahead. You can then look at those little bits and you can have a plan. So something that might seem really daunting. When you break it down, you think, oh, actually, yeah, this could happen, but this is what I'm going to do about it if it does. It's a lot less scary when you look at it like that.

Jo

Definitely. I have been accused of being a healthcare prepper, and that's not inaccurate. But I think if you have a plan for something, when that thing happens, it's easier to cope with. If you're put on the spot and you didn't have a plan, That's when things get really badly disrupted, or it's really like anxiety inducing, or you end up having complications that could have been avoided. So yeah, plan for everything.

Elizabeth

Yeah, you can't be too prepared. And I think that maybe there is like a bit of a bad wrap around the idea of thinking about what could go wrong. But actually, realistically, I think it's looking at the lens that it doesn't have to be a negative lens. It's just a sort of fact. For me, when I'm looking at it, it's like, this is a factual lens. These are the conditions I've got. This is what could happen. Doesn't mean it will, but if it does, I'm ready. And that's so important. That makes a big difference to what I'm able to do.

Jo

Definitely, yeah. And to the amount of anxiety that goes along with doing things, because there are going to be things in our lives that we really want to do. that are scary or hard or daunting or are going to lead to a flare up. And that's okay. There's nothing wrong with that. That's part of the new normal human experience. But if you can go into something feeling prepared, often it just kind of ratchets the anxiety down a couple of degrees. But yeah, from a POTS perspective as well, I think, you know, one of the things that I really struggled with when I first had POTS was that I normally consider myself to be quite articulate. I'm quite a good advocate for my own needs. But losing the ability to effectively communicate verbally was really difficult. I found that really frustrating because I'd be trying to articulate what I needed to somebody. And it was really clear from the look on their face that I was making absolutely no sense whatsoever. And that really threw me because normally, I can talk my way out of a lot of stuff, or like I can effectively get people to do what I need them to do. So I spent quite a lot of time then working on like non-verbal strategies. So communication cards are a really, really good one. So Stickman Communications is a really brilliant one to have a look at. Hannah does also occasionally take custom requests for communication cards. So if you get on the list for that, you might end up with something that really works well. But so having something like that with you, there are also apps where you can type a little message out and it will like your phone will talk for you. Often if you are struggling verbally, communicating in a written format does work better, particularly if you're in a very loud music venue. So even if it's like a notepad and pen, just have some other means of communication as a backup would probably be a sensible thing. Yeah.

Elizabeth

Yeah, maybe a medical ID bracelet potentially is. I know that there are ones on your phone. I really should set mine up. But I guess I wonder if, would people actually think to do it? But I suppose if they pick up your phone to maybe look for an emergency contact, they might then actually look at it. But certainly like with the bracelets and stuff like that, I take blood thinners. So I've got a card on me all the time in my purse that explains I'm on blood thinners, what the dosage is, just in case. and things like that can be quite helpful. Because like you said, people like to intervene. So if you've had a PARTS episode and you fainted, people just love to get involved. I think they think they're helping and they definitely do think they're helping. But sometimes when you've got a condition that you know this is going to happen. And I think this is something, because I have PARTS and people struggle with the idea of that I know I'm going to faint and it's just normal for me. Like I've said, this is normal for me. They're like, yeah, I don't think that's normal. Like, yeah, but it is for me. And it's just that conversation of it's fine. I lose consciousness sometimes, but it's cool. It's just something that happens.

Jo

Yeah.

Elizabeth

But when we're used to it, I guess it's not, it still can be scary, but to other people, it seems maybe like this out of the ordinary thing. But for us, it's just our everyday.

Jo

Yeah. I think one thing with medical IDs is that I would steer away from a lot of the Like you get like QR code ones or like USB drives, hidden things, or ones that look like really nice jewellery. It's great and they look very nice and fancy. But in an emergency situation, if something does not immediately look like a medical ID, it will be overlooked. And a lot of the time, if you're in an institutional setting, so like a venue or like a hospital or an ambulance, Like there are restrictions on what people can plug into site computers. So if you've got an ID like USB stick, nobody's allowed to access that in the NHS. You can't just put random thumb drives in computers and hope for the best because anything could be on it. So that becomes much less accessible from that perspective. So you don't need a whole medical history on that. But if there's something particularly pertinent like being on blood thinners is a great example, or if you do faint, Do you know, having instructions for like, if I'm going to faint, leave me on the floor kind of thing. Or, you know, don't try to pick me up, that kind of thing can be quite useful. Training people to be your version of that as well. So, you know, I don't often go many places alone. If I'm going somewhere with friends, they will be trained on what to do in the event that one of my likely scenarios occurs. So that somebody else can advocate for me if I'm laying on the floor with mushy brain and can't do the words good.

Elizabeth

Yeah, that makes sense. I think it's a really good point about the USB ones and the QR codes. I didn't know they were a thing, but that's, yeah, that's a really good point. Try and think about how accessible they are actually to someone else, making sure that they don't just think, oh, it's a bracelet and they don't realize it's a medical ID. Okay, we'll go on to our second scenario. So for this one, Sophie is a 27-year-old woman diagnosed with hypermobile Ehlers-Danlos syndrome, characterized by chronic pain, joint instability, and significant fatigue. She also experiences public anxiety, which links closely to her physical symptoms, particularly her fear of injury, dizziness, and unpredictability of her fatigue levels. Sophie lives alone in a small flat, however, relies on her parents and friends for assistance with household tasks and transportation. She works part time from home as a graphic designer, which allows flexibility around pain and fatigue management. So I think, again, there's a lot of like really, there's a lot in that scenario and to talk about the symptoms, but also I think what's developed from where I thought was quite interesting was the works part time from home as a graphic designer and how that's actually allowing her to have flexibility around her pain and fatigue management and how that kind of fits into the pacing that she's already doing quite well with her pacing, I think, because she's got a key tip down there. She's adapted her work for her, which is great.

Jo

Yeah, definitely. I think the job bit of that sounds ideal. The anxiety bit of it opens up a wider conversation about the healthcare system pathologizing emotions that are actually quite logical. So in situations like this, if somebody says to me, oh, I've got an anxiety disorder, I would query, is it a disorder? Or are you anxious for very realistic, sensible, obvious reasons? If you cannot trust your body to get you from A to B, and there's a high chance you're going to fall on the floor, injure yourself, faint in public, or spend 3 days on the sofa recovering from going to the corner shop, the logical emotional response to that is anxiety. You're supposed to be anxious in that situation. And if you're not, I'm then a little bit like, Hmm, are we being a teensy bit blase about our health here? There should be some level of concern associated. This kind of anxiety I think is quite useful. And you can use that, you can use, you hear the word catastrophizing quite often, don't you? Like, Oh, you know, catastrophizing, don't be so dramatic about it. I actually think that can be a really useful skill. as long as you direct it. If you're catastrophizing, if you're worried about something and it's paralyzing, like if it's making you so anxious you can't function, that's a problem. But if you can use that to come up with 20 different likely scenarios that could happen and you can make a strategy for all of them, all of a sudden leaving the house doesn't seem so terrifying anymore. Because if it goes wrong, then it goes wrong. You've got a plan in place. The plan works. You contact the person, you do the thing, you have the system. And that's kind of just really takes the fear of the unknown away because you know what's going to happen. You have a plan for it. And when it happens, if it happens, you test your plan and then you go back and review it. And if the plan worked well, great. If the plan didn't go so well, then we come up with a new scenario.

Elizabeth

Yeah, you take that part back then because you kind of, you own it. You're like, I do feel angst about this and this is what I'm going to do if it happens. And I think you make a really good point about how anxiety is just perceived as a negative emotion or a bad emotion. But actually it's... part of our ability to survive is anxiety. It's feeling anxious about things so that we keep ourselves safe so that we think, oh, this could happen. And it's thinking about it not in a way of, oh, I'm being too anxious because I'm worried this might happen, but actually thinking of it as, oh, my body or my mind, my anxiety is helping me identify this is something that could happen so that I can plan for what happened, what I would do if that does, rather than just being this bad thing and being perceived as something negative that you can't feel. You've got to push it away. You can't think about it. You're not allowed to feel anxiety. That's not good. But instead of doing that, thinking, this is just a normal response. This is just my body telling me what could happen. This is my body protecting me. This is my mind protecting me. I think it can shift anxiety from being seen as something that's really negative to something that's actually quite powerful and an important part of you and keeping yourself alive. So like drinking water, we all take that like it's something we should do, we should drink what's good for you. But actually being a bit anxious about things and thinking about what could go wrong is also good for you. Because if we were never anxious, we wouldn't be able to keep ourselves safe.

Jo

Yeah, completely agree. And with anything, it's the amount of the thing that's, so you can drink too much water. You can drink not enough water. That doesn't mean drinking water is inherently bad. So yeah, I think if you can use your anxiety to plan, it becomes useful, it becomes manageable. If you're at the point where maybe if you've had a couple of bad experiences and that anxiety has got to the point where it's now a problem in the same way that drinking too much water can be a problem, speak to somebody about it, get it out there, talk to somebody, you know, and it may even be that in the short term, medication is an option because there are situations where We have so much kind of tension and stress and bad experiences tangled up in our perception of doing a thing that it does stop us from doing it. But you shouldn't have to just be sat there kind of trying to overcome that with willpower and determination. Do you know, like get some support with that? Even if it's just, you know, have somebody come with you while you test your plans out. So if you think you're going to be okay communicating via various other means other than verbal, great. Test it when you can communicate verbally. So if it goes wrong, you know, it is just a test run. But if you know you can do that, that hopefully will take the stress down a little bit.

Elizabeth

Yeah, I like that, having that safe person to go with you. So you've got that support the first time and then you've got that confidence that you can do it. And yeah, it does make a difference. And it's a really good point of. being aware of your anxiety and not feeling ashamed if you feel like you need to get some support or you want to go to a GP and consider medication or consider options that might be available in your area. There's no shame in that. There is, unfortunately, a lot of stigma around mental health. I think particularly with people with chronic illnesses, because in a lot of instances you might be told, oh, it's just anxiety. It's, you know, it's in your mind, as if that means it's less valid somehow, even though we know that it doesn't. Our mind is as much part of us as anything else, as an organ in our body.

Jo

Yeah.

Elizabeth

But because of that stigma, I think it is hard, isn't it, just to go to your GP and say, I do have all these chronic conditions, but also I'm feeling quite anxious and I maybe would like to consider medication. I think when you've fought to get a diagnosis or if you've been in a situation you've had to fight for a diagnosis, then going back and saying, I've got this diagnosis, perhaps it was misdiagnosed as anxiety, but actually now I am experiencing anxiety. It can feel really scary.

Jo

Yeah, definitely. I genuinely think The stupidest, well, Western medicine's done a lot of stupid things, but I think the stupidest might have been attempting to split physical and mental health. Because that's just not how humans work at all. Like if you are really, really anxious, you can get headaches, you can get stomach upset, you can get muscle pain from tension. Do you know your heart rate changes, your digestion changes, there are chemical changes in your entire body. Those are physical manifestations. So acting like, it's all in your mind. Great. Well, pain perception is in our mind, but that doesn't mean your broken leg is any less broken. Yeah, I do. I think there is a lot of stigma. And I think one of the ways we overcome that is just to be unapologetic about our needs and confident with it. You walk into a room and you say, this is what I need. Or you walk into a doctor's appointment and say, I'm here for this. I'm really struggling. Can we talk about it? And if the answer is no, well, then you'd like a second opinion. And if the second opinion says no, well, then you'd like to speak to pals. And if they say no, you'd like to speak to the practice manager. You are entitled to care and support regardless of the cause of your needs. And as much as it's exhausting to fight for that constantly, the more we fight for that, the easier it is to access.

Elizabeth

Yeah, yeah. And you just summed it up perfectly. What do you need to have that? And it's difficult. I think it's very empowering hearing you say that. And because you've got so much experience and work in health care. So it is really empowering to hear that from you. And that that's the stance that you encourage people to take. Because I agree. You just got to go in there and you've got to be unapologetic, even when it's hard, even though it shouldn't be hard. And it's tough because when you're already struggling, you don't want to have to add even more uncomfortable on top of that. But unfortunately, in these situations, sometimes that's the case.

Jo

Yeah. I think a lot of the time, a lot of the time in situations like this, or at least what this sounds like to me, the anxiety is secondary to a lack of support in other areas as well. So if you're anxious about falls, should you be using a mobility aid? And if you have a mobility aid and you stop falling over, the anxiety then kind of goes away on its own. So I think, Yeah, it's worth addressing, definitely address the anxiety, but also have a look at why you're anxious and whether that can be avoided or modified or coped with. So it does require that kind of holistic mental and physical health approach, almost like your brain and your body are stuck together somehow. But yeah, I think mobility aids as an example, I think loads more people should be using mobility aids. a lot of people should have way more mobility aids to just pull out of a cupboard if they need it. I walk 97% of the time inside my own home. I've got a wheelchair, I've got two pairs of crutches with different features, walking sticks, I've got a rollator. Having all of those options means that I know I can get to the doctor's surgery independently, regardless of which bits of me are throwing a tantrum on the day. It enables me to be consistent about going out and doing things. And that was a huge change for me, recognizing that doing things sat down is just as valid as doing them walking. Great. I think more people should be doing it. I think there's a perception that you can't have a mobility aid until you need it all the time. It's just not true. Do you know? If you're thinking about getting a mobility aid, get one. Because people that don't need mobility aids don't query whether their life could be improved with a walking stick. Do you know? So if it's on your mind that you might need one, nine times out of 10, you need one.

Elizabeth

Yeah, and it does make a difference, doesn't it? It makes that big, big difference. And I've used mobility aids, and I still do. Throughout my journey, I broke my ankle a couple of years back, and a massive part of being able to relearn to be able to walk was using a roller, like being able to hold onto it and just take tiny steps. Because it gave me that flexibility that I couldn't achieve otherwise. And having the wheels on it and the brakes meant that I could just push on the brakes, and I felt that... It was a couple of things, actually, because it was almost a feeling of being actually held by it as well. Like I was doing it with it. Like me and that, we did it together. We both learned to walk. And it was just that kind of empowerment of like, this is a positive thing. This is just something that I'm using at all. Sort of like someone drives their car to work because you can walk all the way to work. It's exactly like that. And that's how I was able to make myself feel more confident going out and getting one. And particularly because where I went to get mine from, I was the youngest person in the whole place. You were looking at me and I was just like, where's the pink one? That's what I wanted.

Jo

I love that.

Elizabeth

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