Pacing in Practice (Part 2) | The Chronic Illness Management Programme: Section 5

In Section 5 of our Chronic Illness Management programme we continue to 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 continue to 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. Thank you to our sponsor, byACRE, for helping make this section possible. byACRE creates lightweight, stylish rollators that challenge traditional perceptions of mobility aids. Designed for everyday life and outdoor adventures, brACRE rollators help people stay active and independent. So we'll go on to the next scenario. Fred is a 55-year-old grandfather who has persistent swelling and joint pain, especially in his knees, which is a symptom of his rheumatoid arthritis. He has most difficulty when walking on uneven ground and when standing for too long. Fred would like to walk his five-year-old granddaughter to the local park, which is a five-minute walk from his home, and spend time with her playing on the swings and slide. He is worried that the pain will disrupt his ability to take his granddaughter to the park.

Jo

Mobility aids.

Elizabeth

Yeah, it's come on beautifully from our conversation. I've not been before. Immediately. He needs mobility aids he needs a rollator. It's what needs to happen.

Jo

Yeah. Maybe even a power chair, to be honest. Like, yeah, scooter, something like that. The important part of going to the park is not walking to the park. The important part is having the energy and capacity to play with your kid when you get there. Do you know? Yeah. So use a mobility aid, padlock it to a bench, go and have a nice time, and then scoot your way back home again afterwards. And there's nothing wrong with that at all. And yet it's something that's perceived as being a little bit odd in this. Yeah, but it just isn't. Same thing for the shops. Do you know, you can use mobility aid to get to the shops, leave it out front, walk around the shop, and then whiz your way back home again afterwards. But it genuinely, the bit of that, the bit of that scenario that adds value is the joy you get when you reach the park. Do you know the walk there? It doesn't matter how you get there, it matters that you get there. So mobility aid would definitely be my advice. Obviously, this is a bit of a daunting process, but I would say there are definitely perks to having a mobility aid, particularly one that you can hide a picnic in. So that I think is a thing that's worth factoring in. I would also factor in that As you've already said when you went rollator shopping, getting a pink one, pick something that has a little bit of personality. And if that means you getting a mechanic mate to, you know, spray it with flames up the wheels, go for it. I put Christmas lights on my, like the little battery operated packs. I put them around the wheels on my chair most years because why not? And it brings joy. Tinsel, that kind of thing. Like, ridiculous number plates or stickers on the back, or, you know, add some personality, use it for what you need it to and do it confidently. And I think more often than not, what we're worried about is what all people think. And what people will think is, oh, that's really cool. I like the stickers on the back, or, oh, I love that the wheels light up, or I'm so jealous I couldn't carry my grandchild and my picnic at the same time. Do you know? So yeah, that I think is my advice there.

Elizabeth

Yeah, I think that's really good advice. It is tricky with the sort of worrying about what other people think. Because like, it's easier said than done to not worry about what other people think. Because we're going to do it. We're socialized to do that. It's sort of part of being human, being in a society is wanting to fit in because you want to be part of the group you're in. That's, you know, more. But I think, yeah, I think sometimes we think the worst case scenarios. And we think, oh, some, what are they going to think? You'll think the worst case scenario. When really, like you said, they could just be thinking, that's cool, I love that color. Or, you know, look at how fast that thing can go.

Jo

Yeah.

Elizabeth

You know, it really is. It's not always the worst case. And what I've tried to do myself is just kind of reprogram my brain to think the best case scenario. Like think everyone, like the most positive things people could be thinking. Because I don't know what people are thinking either way. So I might as well make up that they're thinking the best thing rather than make up that they're thinking the worst.

Jo

Yeah, definitely. But equally, if you saw somebody using a mobility aid, what would your thought process be?

Elizabeth

Yeah, exactly.

Jo

I think we've had this conversation before. It's easier to be empathetic towards others than it is to ourselves. So you might look at somebody else using a mobility aid and go, oh, look at them getting out of the house. Isn't that great? They've got all the freedom to go places. Why don't we then apply that to ourselves? Why does that rule not hold true for all of us?

Elizabeth

We are very harsh on ourselves. I think we are like our own harshest critic.

Jo

Yeah.

Elizabeth

Yeah. And another thing that was mentioned there was he was worried that the pain will disrupt his ability to take his granddaughter to the park. I think that comes back to what you're saying about pain medication. Don't be afraid to take it, take some in advance. If you're worried the pain is going to affect you, prepare ahead for it. And hopefully as well, the mobility might actually reduce some of that pain.

Jo

Yeah, I would definitely think cutting the walk out from the park would be helpful. Equally, there's no problem at all with going back to a doctor and saying, I'm in pain doing this particular activity. Because it might be that there's friendly neighbourhood occupational therapist or a physio or somebody that you can speak to. What is it particularly that's triggering that pain? Is it that you're walking on uneven ground? Is it that you are walking on uneven ground in the wrong kind of shoes? Is it that the surface the playground is made of is particularly problematic? Is it that it was cold and damp that morning? So the achy pains were worse as a starting point because you may not be able to miraculously make the park right next to your house. But if there's another factor impacting that pain, dealing with that can have a knock on benefit. And then prioritization around like what are you doing the day before and the day after? Have you scheduled a rest period? Because I think a lot of the time we know we're going to do stuff that's going to cause us to have a rest period. If you have pre-planned a rest day that's just Netflix pillow for microwave food, favorite snack, and you get that done, congrats, cleared your to-do list. If the first thing you have to do on your rest day is cancel plans, the whole day starts off feeling rubbish. So if you know you're going to the park on a Monday, Tuesday, maybe don't book a tennis game in first thing in the morning, do you know?

Elizabeth

Yeah, yeah, save the tennis for like Wednesday night.

Jo

Yeah, absolutely.

Elizabeth

Yeah, I like that. I like planning a nice little pillow fort day though. Get on top of my watch list.

Jo

Absolutely. Yeah.

Elizabeth

Make it fun.

Jo

Yeah, definitely. If you happen to have anyone hanging around, you can always actually make a pillow fort and you can watch films together. Do you know? It's great.

Elizabeth

Yeah. Group activity, socializing. It's good for you. Yeah, definitely. Okay, so we're going to go on to our last scenario now. A middle-aged woman diagnosed with chronic fatigue syndrome and autism has been out of work for a year. Having previously worked as a teaching assistant, she now feels ready to start a phased return to work but is anxious about pushing herself too far and being unable to work again. She has been recommended to pace herself but doesn't know where to start. Her main concerns are becoming too exhausted from a physical health perspective and becoming too overwhelmed due to her autism. She would like some easy to remember pacing tips that can help her get back to work and stay in work successfully.

Jo

I mean, see previous episode, I think. Yeah, I think that. Yeah. And likewise, you know, like if there are particular activities that are really difficult to pace, reach out, go over them with somebody, you know, practice, problem solve it, that kind of thing. I think if you are ready for a phased return, my first bit of advice actually starts before then. And that's to start making your daily routine look like what it will have to look like when you're working. So if while you've been off work, you've been getting up for a leisurely 10 in the morning, having a nice little in-bed breakfast, getting dressed at lunchtime, and then watching a bit of TV. And you're going to try and start a phased return that requires you to be in work, dressed and functional for 8:30 in the morning. So that's a bit of a disparity there. So before you even think about your phased return, start getting up, getting dressed, having breakfast and walking a lap of your house. If you can do that consistently in the time it would have taken you to get to work, that's a good starting point. If you know you're going to be working in a school, what's that school's lunchtime? That's when you have lunch. If you're on any medication, you need to start adjusting the patient schedule so that it fits in with when you naturally have breaks, maybe. You might need to start thinking about when you're going to do laundry. What days of the week are you, you know, washing your hair, as an example. Are you going to be eating lunch at school or are you going to be making a packed lunch? Because if so, you've got sandwich time prep to factor in as well. Get your daily home routine as close to your work routine as possible. and work out how your essential self-care fits into that. And that might take months. Don't rush that process. When you can do that, consistently. regardless of whether you've had a flare up or a cold or a bad day, that's when you're ready to start thinking about your actual phased return. Whatever you think your phased return should be lengthwise, double it. So when I work with people and they're like, oh, I've got a four week phased return, four weeks is useless. Four months, we can work with that. I think there's absolutely nothing wrong with wanting to get a little bit of work plateau that and just ensure you can maintain it before you then start escalating to doing like extra days of the week or more work as an example. And I think the slower your phased return, the easier it is to ensure that it works. Because what you don't want is phased return fail, and then another failed phased return, and then another failed phased return, because each time that happens, it sets you back physically and it erodes your confidence that you can do this. And it's just not a great feeling, as well as the fact that it's obviously disrupting your workplace as well.

Elizabeth

Yeah, I think that I love your advice on that. We've spoken about something similar-ish before in terms of preparing in advance. I think it was when I was getting ready for my master's and we were speaking about how I was going to work out the routine. And I just really love the idea that you start living the routine before you even get to that stage. I think that's just brilliant, such a great way to approach it. And like you said about the phase return slowly and consistently. And sometimes Sometimes in workplaces that can be challenging. So you might have to be prepared to maybe look at getting some, maybe some support of advocacy or maybe writing some emails or letters in advance explaining this is what I'm going to need. And perhaps working with an OT or of your doctor, any support you can access really. Sometimes that can be funded through schemes like Access to Work in the UK. And just trying to tap into any kind of support you can get so that you know that In an ideal world, you want to feel that the workplace is fully supporting you. And hopefully, most of the time they are. But if you do need support, you know where to go, where to get advice, make sure that the law is being followed around the Equality Act. You know, if you feel like you're being pushed to return a bit faster than you feel is right for you, know what your rights are. So you can with confidence say, actually, no, that's not going to work for me. And you can say why. And you can say, this is what's going to work for me. This is sustainable. And you can advocate for yourself from a place of knowledge. If you've got that in advance of them being in the situation, it's a lot less overwhelming.

Jo

Yeah, brilliant advice. Yeah, definitely knowing, being able to effectively advocate for yourself starts with knowledge. So completely agree. I also think it's worth having to think about how you explain your reasonable adjustments. Because if you're telling your workplace you need a phased return of six months rather than six weeks, what's in it for them? Because what's in it for them might actually be that there's a higher chance of success of you actually managing to make it back.

Elizabeth

Yeah.

Jo

Whereas if you can kind of say to them, look, if we do it in six weeks, it's going to fail. And then I'm going to have to do it again and again and again. And each time they're disrupted and they've got a fine cover and they've got to sort things out. Maximising the chances of this working really, really well is a win for the workplace as well as for you. So I think, you know, bring it all back from a pacing perspective to efficiency. So if you're needing extra breaks or you're needing space in the staff room where you can store a yoga mat and a pillow and some noise cancelling headphones and an eye mask so you can go and just rest for a bit, what do they get out of you doing that? And what they get out of it is that you're all less brain foggy or less overstimulated, or you're better able to concentrate or you'll work you know, rate and your work quality will be higher. So if you can bring, like justify why you need those things in a work context, often employers find that a little bit easier to understand, rather than just explaining that you want to be able to at least vaguely look after yourself when you get home, which is also a benefit, obviously. But yeah, what do they get out of things? And if you can justify why your employer should get on board with it, it's much easier to convince them to let you get away with some slightly more outside the box reasonable adjustments.

Elizabeth

Yeah, I think it is that changing the perspective and sort of sitting down and maybe even saying, I'm really excited to have to start my phase return and come back. And I'm really excited to be part of the team again. And I really want to make sure, particularly in this situation as a teaching assistant, that the students have consistent support. So what I'd like to propose is that actually I do a phase return over a longer period of time so I can work those hours up slowly and I can be there consistently for them and changing it as well. That might also make you feel a bit better about it yourself because I think shame and guilt, even though we shouldn't feel them around needing adjustments, they do come up. They do come up when you feel like you have to ask for something, even though it's not unreasonable, even though it's something that just allows you to function in a society that's not designed for you, those feelings of shame and they have an impact. And if you can think about it from our perspective of actually I'm doing this for that consistency for the students, or I'm doing this for that, and that's sort of how I when I'm having a difficult time with something and I want to change something or I need to adjust something, I'll think about the impact it has on the people that I support. And that empowers me to be able to make those positive steps for myself. I often do think, like, would I want someone to look at what I'm doing if I'm overdoing it? Would I want someone to look at what I'm doing and think, oh, she's doing so well, I should be more like her when actually I'm burning out? And I think when I would not. want someone else to think that this is aspirational. And that's what stops me. That's what brings me back and thinks about you need to put yourself first. Not even if I can't do it for myself, doing it because I don't want other people to see it and think, oh, I need to do that because she can or I should be able to. I find that really helps me. If I can't put myself first, trying to see it for that different lens.

Jo

Yeah, viewing yourself as a role model and thinking about what kind of example you're setting is so, important. And I think this is also one of the reasons why It's justifiable from a reasonable adjustment perspective. It's not like you're just taking. You're asking for things that allow you to do the job, but there are skills that will be inherent to you as a disabled person or to you as a neurodivergent person that your colleagues don't have. So there are gonna be ways that you are enhancing your workplace just by existing. Disabled people on the whole, brilliant, creative problem solvers. We've had to be because the world doesn't meet our needs, right? You can't teach problem solving as a skill set. Either you're a problem solver instinctively, or you're kind of not. And we almost always are. That's a really useful thing to have as an employer. Empathy is a useful thing to have as an employer. Having the skills to avoid burnout are useful if you can teach those to your colleagues. If you are working with a diverse group of clients, as an example, if you are autistic and you've got autistic students in your cohort, you will have an inherent ability to understand what they need that your neurotypical colleagues do not. No matter how much training they've had, no matter how many courses they've been on and how much awareness has been raised, you will inherently understand that student better than your colleagues. So if your employer wants the perks of having you in the office, They have to get on board with the reasonable adjustments that keep you there.

Elizabeth

Yeah, I think that's so important. There's different ways of thinking about things. And like I said, problem solving. We are problem solved. We have to be as, you know, every single day my body is a constant problem. So I have to be a problem solver because I live in it. And it is, I also have an amazing sense of humour as well. So all these pros have come alongside all this chronic illness and trauma. You know, I think it is thinking about what you bring and remembering that your worth isn't less because you need adjustments and that health or level of health doesn't equal worth. It doesn't have any impact on it. Like your health might fluctuate, your worth doesn't fluctuate. You were always just as bad whether you can do everything on your to-do list or nothing. It doesn't actually change you as a person and your worthiness to be in that space. And even from a perspective of Maybe, you might think, I don't feel like I do bring anything to the workplace. But you still have a right to be there. You still have a right to access those roles and to have those adjustments so you can access those roles if you want to do that. And so that you can be part of society. You don't have to earn your place in society.

Jo

But couldn't agree more.

Elizabeth

Well, that is us done with the scenarios. Thank you so much, Joe. That has been really interesting. I really enjoyed that.

Jo

Thank you. I really enjoyed it too. It's been really great. I think it's always really nice to talk to somebody who has sort of similar perspectives on things to you. It's, yeah, validating, I guess is the word.

Elizabeth

Yeah, definitely. And thanks again to your amazing OT students who wrote those scenarios for us. I hadn't read them before, so I really enjoyed experiencing them for the first time on this recording.

Jo

Thanks, team. Great work.

Elizabeth

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