In this episode of Let's Talk About CBT, Helen Macdonald speaks with Pete Moore, author and creator of The Pain Toolkit, about his journey of living with long-term pain. Pete shares his experiences of how he was able to move from being overwhelmed by pain to learning CBT techniques and strategies which helped him learn to manage it effectively, regain control, and even help others do the same.
Useful links:
The Pain Toolkit website
Live well with pain website
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This episode was edited by Steph Curnow
Transcript:
Helen: Hello, and welcome to Let's Talk About CBT, the podcast where we talk about cognitive and behavioural psychotherapies, what they are, what they can do, and what they can't. I'm Helen Macdonald, your host. I'm the Senior Clinical Advisor for the British Association for Behavioural and Cognitive Psychotherapies
Today, I'm speaking with Pete Moore, who'll be sharing with us his journey living with long term pain. Many years ago, Pete took part in an inpatient pain management program, which among other things uses cognitive and behavioural techniques to learn how to manage long term symptoms of pain. Pete will tell us about his journey and where he is today in not only managing his own pain and staying active, but also how he helps other people to learn key ways of living successfully with long term pain. Pete, would you like to introduce yourself to our listeners?
Pete: Yes, well, hi everyone. My name's Pete Moore and I'm the author and originator of the Pain Toolkit. I just want to say, Helen, thanks very much for inviting me along to do this podcast and I'm really looking forward to having a chat with you.
Helen: That's great. Thank you very much, Pete. I think a good place to start would be if I ask you just to tell me a bit about how you ended up living with long term pain.
Pete: Yeah, it's, such a familiar story actually that of mine. Back then in the early nineties, I had back pain and such and I used to sort of manage it by taking over the counter medication, et cetera, or just having a rest. But I didn't really do a lot to help myself. I didn't really know what to do with it. I just, you know, it's like most people just get on with life. But I think it was about 92, back then I was a painter and decorator, and I was painting a house over in Windsor Castle. Anyway, I went home that night and the next day I couldn't get out of bed. I found out later on that I'd prolapsed some discs in my back, I think, two in the lower, and one in the middle. And I was pretty scared, really frightened, et cetera. And I found it difficult even going to the GP, really. And anyway, long story short, I was given medication and anti inflammatories but little was I to know that back then there was, you know, managing back pain or managing pain itself was like being put in something called the medical model. And I wasn't really given any guidance around what I could do for myself. It was just, "take these pills. If they haven't worked, come back and see me". So I wasn't quite on Christmas card terms with the GP, but, you know, I was around there every month or so. Anyway, I had to stop working et cetera. And for me, movement was more pain. So I stopped moving. I was sent to the physiotherapist, but back then I don't think that they was quite well up to speed with managing pain or back pain and I was given exercises to do and which say do 10 of these, 10 of these, 15 of those and, and as you know yourself, when you've got subacute pain, as I did, then, I've got up to five or six repetitions and the pain went up so much I thought this can't be right. So, to me, I learned that, back then the exercise equalled more pain. So I just stopped moving.
Helen: So I'm hearing you got lots of back pain. You did what most people would do, which is go and see your GP and you got prescribed medicines. And you said, medical models. So it's very much, you go and see somebody and they're going to prescribe some treatment and you expect to get better. But what you're telling me is that the medicines, the physiotherapy actually ended up probably not helping very much. And actually you were still struggling with the pain. And you also said that you were really scared as well.
Pete: I guess I couldn't see any future for myself really and I was getting depressed and I just, I had no plan, you know, that was it and at the time I was only I think in my mid-forties, something like that back then. And I thought what's my future? I couldn't see any future for myself, and I went through a pretty, pretty sticky time really, you know. People that used to call and say how you doing, or they would pop around, but it was the same old story and then even people stopped ringing me, stopped calling me because all I could talk about was my back pain really. And they probably got their own problems to deal with, you know? And I did look around for seeing people privately, you know, the osteopaths and chiropractors and all them sort of guys and, and all in all I spent, I did actually spend all my savings really and, I was a doctor shopper, I was a therapy shopper and looking for something to fix me, and little was I to know that I had to learn how to fix myself.
Helen: So I'm hearing it was having a huge impact on every area of your life. It changed, you know, sort of whether you could go to work. It was changing whether you could see your friends. It was changing how you felt about yourself and your mood went down. You felt angry, anxious, all of those things. So tell me how you started to change how you approach trying to manage this, and moved away from, what did you say? Being a therapy shopper?
Pete: Yeah, therapy shopper, doctor shopper, serial shopper, serial health care. I was just looking for someone to fix me because as a child, you know, you don't feel well. So you go to the doctors, the doctor gives you something or do something. And then after 10 days or so you feel better, and you get on with your life. But, when it comes to long term, this back pain, it wasn't. I had a couple of turning points, really. One was, I thought, well, I'm not getting anywhere with the healthcare professionals. So, I always remember a little saying I learned years ago that, if you want to learn something to teach it, and I thought, I need to be around people like me, you know? So, I started up a back pain support group and I was quite surprised. I was contacted a local newspaper and said I'm starting this up, can you publicise it for me? And, I was quite surprised, the hall I booked, it was only, I think it's supposed to hold about 20 people, but I think it was over 50 people showed up, like, you know.
They was all like me, you know, struggling, looking for answers and that's the thing we wasn't, none of us were getting answers. Anyway, someone told me about a woman in Norwich or Norfolk who'd been on a pain management program in London called Input and it really worked wonders with her. And so I contacted them asking if someone can come along to speak to the group about what they did, et cetera. Well that was, that was the turning point and a really nice lady called Amanda Williams. She was a clinical, she is a clinical psychologist. And she'd come along and spoke to the group about, you know, learning how to pace the activities, about graded activities, moving will actually help your pain, et cetera. Really positive, information. I thought this is, this is right up my street. This is for me. And so I applied to go on the course and sadly it was the NHS so I had to wait till, 96, but in between that time, I was really getting depressed as well. And, on the, I always remember the date as it's my birthday, 31st December 94. I got so down with my pain, I had some friends wanted to come and take me out for the night, being New Year's Eve and my birthday and stuff like that. And that day I had my full quota of medication. I said, I just can't go out like, you have to go on your own. And that night I did actually consider ending my life really, because I just couldn't see any future for myself, you know. I think the only thing that kept me going really was knowing that I was on a waiting list to go to the Input program. And the program gave me the, not only the tools and the skills, but it gave me the confidence to manage my pain myself.
Helen: So, what you were saying there, Pete, about reaching a point where really you almost lost hope. Even though you'd done everything you could and you'd started a support group even, and found other people with similar experiences, you were trying everything you could, and then you did find something that you've described as a turning point for you, but you still had to wait a long time for that. I mean, I'm very pleased that you're still with us and I'm particularly pleased that you've got this opportunity to tell our listeners about, you know, how you did reach that turning point and how it helped you. So please do tell us what happened when you went to the Input pain management program.
Pete: Well, it was an inpatient program. So, it was spread over two weeks I think the very, the first day, it was the best day for me because, Charles Pyler, who was the medical director at a time, he went around all the people in the group. There was 18 of us there, I think. And, and we were split into two groups of nine and, but he went around to everybody in the group asking them how long they'd lived with pain.
And I think for memory, it was nearly 400 years. You know, of the 18 people. But he said, he said something really profound and it still sticks with me. He said, "we believe your pain", because when you live with pain and you're seeing endless people and nothing seems to be working. You start thinking that people are not believing you, you know, that, perhaps you're imagining it and things like that. And, we're malingerers and stuff like that. When he, when Charles Pylor said that, I thought, yeah, I'm, I'm home finally, you know, I feel this is my place where I'm going to be my place of learning. And I embraced it because to me that was the last chance saloon. And it was all different there, so when we was given exercises to do, it wasn't, you know, do ten of these, do ten of these, you know, like the old days. It was like do this and then, cut it back by, you know, say, for example, you did, you know, get sitting up from a chair, you could do six, cut it back, you know, just do three, then add on one each day sort of thing like, you know, it was proper graded exercises.
So not only was the, with the, doing the exercises and stretching and stuff like that, but the other important thing I learned was about pacing. Now, to me, you know, we've all, everybody knows the term pacing, where you just pace yourself, you'll be alright. But what is pacing? That's the, that was the question, you know, we were asked, well what is pacing? And what I learned was pacing is taking a break before you think you need to. Because see what, what us people with pain or even, even long-term conditions, what we do is we use our pain or our symptoms as a guide. So let's say for example, you're walking, etc. And then when you, uh, when the pain starts or increases, you're thinking, oh, I better take a break now. And what I learned that, that wasn't pain management, that was the pain managing me. And through learning pacing or taking a break before I thought I needed to, actually allows me to actually do more throughout the day without increasing my pain or my symptoms. And I'm still doing it now, I'm still pacing myself. So that I, allows me to do, you know, do what I do, et cetera, and enjoy life.
Helen: Thank you Pete. So what I've just heard there is there was something really important about being believed, you know, that that was how you were greeted is that actually, yes, we believe your experience of pain. We believe you. And we don't think that you're making it up or exaggerating. We know that if you say it hurts, it hurts. We believe you. But there's also something really important about getting more active, managing how much activity and rest that you do, doing a bit less than you thought you could do actually overall helped you to do more in the end.
And there's something important about having other like-minded people around you, people with similar experiences. And while inpatient pain management programs, there still are some, there's also outpatient primary care pain management group settings now which weren't available in the nineties when this was your experience, but the principles are still very much the same about learning to get the balance right and, learning to live well with the pain rather than trying to make it go away, which hasn't worked generally.
Pete: As I said, back in the day, it was like, movement meant more pain. But what I learned through, you know- 'cause the thing is, once you leave the program, you've got to keep your exercises going and stuff like that. And that can be difficult as well as I found out. Whereas back then exercise was not my enemy, but not my best friend either. But little was I to know that keeping stretching and exercising and moving, et cetera, is my best buddy. I'm pleased to say that since about a year after the program, I think it was, it was 97, that was the last time I took any pain medication. So for me, I still do me stretching. I'll do me some yoga in the morning and then I'll go down the gym and then do some more strength and exercises and stuff like that. And, to me, doing exercises and stretching and whatnot, yoga, tai chi, that to me is the equivalent of taking meds you know, but without the side effects, of all the pain meds and whatnot. I think the most important thing of what I learned, what I have learned over the years was that the skills and the tools that I learned on the input program or the pain management program have been transferable. So when I hit 50, I started getting arthritis in my joints and my hands, knees and whatnot. So again, using the skills and tools from the Input program and, and in recent years when I was diagnosed with prostate cancer, again, I'm still able to dip into that knowledge fountain of self-management. Well, what can I do to help myself like, and, you know, even with the oncologist, like, you know, when I'm talking to them and I'm saying well, at least this is what I'm doing, they seem a bit shocked like, you know. But it's only because of what I learned back in 96 that their life skills that have been transferable for me over the years and as I've become an older person now. I'm 70 years old.
Helen: Well, congratulations, Pete.
Pete: It's a miracle, you know. I've got a 70 year old body, but you know, my brain's still ticking over in my thirties, like, you know.
Helen: Absolutely. And, and I think, what I'm hearing though, Pete, is that actually you're, you're doing better physically at the age of 70 than you were in your mid-forties when all this started to happen to you. And you've gone from, you know, really finding it difficult to move, being in a lot of pain, taking all the pain relief you could to learning how to stay active, do your exercises and lots of different types of exercise. And that it applies to any kind of long term pain. It's not just back pain. This, this applies to any kind of long-term pain and you've kept doing it over the years. So, so you've mentioned yoga and Tai Chi and going down the gym. Tell us what you do down the gym.
Pete: I was always a lot of what I call a gymophobic, really. My partner at the time Kim, she was a yoga teacher and she would encourage me to go to the gym like and I just thought all the good looking dudes go down there, like all that, you know, ones with big, big guns and lycra and whatnot. And, you know, for people that don't see me, I'm no Chippendale like, you know. But the thing is, I got into the gym and although I was exercising at home, but now I found out when I started going to the gym, the pain levels dropped off even more. I thought, whoa. And to me it was, meeting other dudes as well, meeting other people. And, for me, I go down the gym and I'm only a little bit of a routine. It's not a bonkers routine, but I go down there at six o'clock in the morning. I'm a bit of an early bird, but I do me yoga about 20 minutes, 30 minutes of yoga before go down there. Then, I'll do some weights, because of the treatment I'm having from, the cancer. I've got to strengthen my bones because it's a hormone treatment I'm having. So, I'm prone to osteoporosis, I think, I think it's called. So I have to strengthen my muscles. And, but then I'll go, there's like a bit of another level there, so I'm out of the way of people, but I'll go up there and I'll do again it's a bit more stretching, but I mainly do all my Tai Chi up there. They all laugh at me, because of all the weird movements I do, but I don't care, you know, I'm enjoying myself, and, you know, for people that, Oh, Tai Chi, I do come out there perspiring, like, you know, it can be a workout itself, but for me it helps me with a breathing. I've always had asthma as a child since I was a kid, so it helps me with a breathing, but relaxation. And every time I come away from the gym, you know what, I'm really, I'm really a chilled out dude. I really feel great. It's great, you know, great for my head. And it's funny enough, I, I ask people, so when I see a newbie down at the gym, I, I have a little chat and I say, why'd you come to the gym? And even the young dudes like, I'm quite surprised they say, I come here from my head and, how it's, how exercising helps their mental, health, et cetera.
The other thing I do as well, I'm lucky where I live, it's quite a nice area, so I'll go out for walks and stuff like that. I call them pacing walks, so, you know, I'm not walking for miles and miles and then, but for me, it's a nice way of relaxing as well.
Helen: Again, what I'm hearing there Pete is about the importance of getting the activity right and the range of activity between doing the yoga and stretching, Tai Chi. I should perhaps share that I also do Tai Chi, which helps me with my balance and helps with my joint pain as well. But you also do the strength training, you're looking after your bones and your muscles, with those exercises as well. And I was really curious to hear what you're saying that over the years, the way you think about it has changed an awful lot as well. how you think about what the pain means and what you do about it is different from what it was all those years ago before you encountered the Input program. And did the program actually do anything specific about thinking, or is that something that's happened over the years with experience?
Pete: I suppose there was a lot of things going on, because pain does mix up your thinking. Your medication is changing your thinking, you know, especially on the, the strong stuff like the strong opioids and whatnot. So you get fuzzy thinking and so, if you're lucky enough to get on a pain management program or, you know, being outpatient or an inpatient, when you get to those sort of places, you are one mixed up person cause there's so much going on. Your thinking is all over shop, you know. So those two weeks went like a rocket anyway, but it's the keeping up when you go. I was lucky enough that I went back to the back pain support group that I was running at the time. And, I know, I know then, that I, that was how I started getting into doing other things like, putting a mini pain management program together.
But for me, it's, I think for a lot of people, when I was talking to Paul, I don't know if you know, Paul Watson used to be, like a physiotherapist, I think up at Leicester and he was, he was in the area a few weeks ago and he's a bell ringer now, amongst other things, and I was chatting with him and we were talking about this, about when people leave the program and he said before people leave the program, they have to have a sense of purpose. And that really struck a chord with me, really, because I don't think people, it's like, well, you've done the course, off you go sort of thing, yeah, and what is their purpose?
What is their, what are they going back to? And that's the importance of setting goals and action plans and stuff like that. So I was lucky I went back to the support group and so I was keeping myself busy in that way. That was my purpose. But I think a lot of people drop back into the old ways of, you know, they're thinking because they've had that, that, that period of time, whether it's, over spread over two weeks, three weeks or whatever, or longer, but what happens after that? I think that's where people can fall back into their old ways and I think if you're a healthcare professional listening to this, it's about before, before people leave you, it's about, they have to ask, well, what is their short, medium goals, long term goals. What is our purpose? What are we going to be doing for the rest of our life sort of thing, you know, obviously a day at a time.
Helen: So one of the key messages we want our listeners to take away with them from hearing what you're saying is what do you want in the long term? What, what are your goals and what's the plan that's going to help you meet those goals? And I know that, people who work. you know, sort of with people in a similar situation may well be used to doing a thing called a relapse prevention plan or a long-term wellness and recovery plan or something like that. And you've told us about, you keep your activity levels up, you pace yourself, you do have a sense of purpose. You've got things that are meaningful, that matter to you in your life. And that's really important. So there's something about having that, you know, what's important to you and being clear about what you're going to do. So, what would you say to people, because I mean, however well you manage it, there's going to be bad days, aren't there? There's going to be, you know, you'll get a flare up or, or a severe increase at some point, however well you do. What would you say about that?
Pete: Well, setbacks are normal. It's as simple as that. we're overdoers, you know, people with pain, in fact, people with long term conditions, we're overdoers. Hey, listen, we want to keep up with everybody else like, you know. And we don't want to stand out from the crowd and, and so what it tends to do, we, we overdo things, we overextend ourselves and the chances are that, it's going to increase our pain or our symptoms, et cetera. So it's important to have a setback plan. Think of it, think of your setback plan like a spare tire on a car. So you're in your car, you get a puncture, if you can change the wheel yourself you do it, if you can't, you wait for the breakdown. But the thing is then you put your spare, spare tire on, spare wheel, and off you go, carry on with your journey. And it's the same thing with us lot, you know, we need it. We need a setback plan because we're overdoers. I'm still an overdoer. I have to police myself that way. I'm not overcooking myself. I can get carried away, especially when I'm working in the garden, etc. So, it's when we do, when we do have a setback, pain increases, it's like, well, what's our plan? You know, so, so I can get back in the driving seat as soon as possible.
Helen: Okay. So, so setback planning is about. Yeah, you might need to slow down. You might need to take a step back a bit, but you don't stop. You don't go back to square one and you get back on to your plan, you know, sort of after a short space of time where you perhaps had to rein it in a little bit. But you still get on with your plan. You still move towards your goals.
Pete: Yeah I'll always suggest to people that they just cut everything down by half and then gradually like pace it up again, carry on keeping active, do you still do as you're stretching, think about how you're stretching, say, so if you're holding a stretch you got used to you holding stretch for 10 seconds, perhaps just hold it for five seconds.
I always think chop everything in half like, you know, it's like pacing, you know, like. People say to me, well, you know, taking a break before you think you need to, well, when's, well, when's that? When you set a baseline, let's say you can walk 100 metres and then the pain starts, well take a break at 50. Chop everything in half because everybody knows what half of something is. That's the same thing with a setback plan. Just chop out all your activities that came down by half and then slowly increase it. At a pace that suits you. Take your time because at the end of the day, we don't want to lose our confidence again, because, you know, people in pain, we, where we were can do people end up being can't do people. So it's about keep being a can do person, but do it in a pain self-management way.
Helen: Thank you, Pete. So being a can-do person, Pete, you put together the pain toolkit. So tell us about that. How did that come about and what's involved in it?
Pete: Well the Pain Toolkit had come around just by, just pure chance really. After I'd come off the pain management program, I thought there wasn't anything in my area. So I thought, well, okay, well I'll do one myself then. So I put together a six-week course for the people in the support group.
In fact, it was lucky really, because by then I bumped into another lady called Maggie Hayward. She'd been on a pain management program in Surrey, I think, a few years earlier. And, she was, like me, she was so impressed with it and she put together a video for all the pain, all the stretches and exercises from a pain management program. So the, the program that we put together was called Fighting Back, and we used the stretching and exercises from the video so the people bought the video and they could do those at home, but the physio that we hired showed them, made sure they were doing it the correct way, et cetera.
So, after that, the, I don't know word got around really. Someone had contacted me about some, a German company wanted, I think it was a, it was a, a pharma company and they, they wanted to hear from a patient apparently. None of these managers had ever heard from a pain patient. So I went, they invited me over to Germany to, to do a talk which I did to their managers. I don't think they were that interested, but I, I was wild, you know, I mean, I've never been out of the country sort of thing, with back pain, et cetera, you know, so it was a bit of adventure and a bit of apprehension as well.
But then someone else in, in the company had heard about my trip there and, they were putting together like a website for healthcare professionals to learn about pain management. They asked me to write a module for it called managing pain from the patient's perspective, and so I put together, I wrote this module about managing paint, but while I was writing it, remember I was a painter and decorator, so what tools did I need to be a painter and decorator, and I thought people who paint, we need some tools as well, you know. So I started writing together, put together some tools, I think there was about, initially there was eight, and then I was showing it to healthcare professionals I knew and stuff, and they said we need to include this, that, and the other, and what not, and then all of a sudden The Pain Toolkit come around and by then I'd started working in the NHS on something called the Expert Patients Program. I was a trainer and I was at a meeting in Cambridge, and there was a lady there called Angela Hawley. She was in charge of long-term conditions at the Department of Health. And I just took, took a chance on her. So I went up to her at the end, I said, she was doing a talk there about long term conditions. And I just said, oh, hello, you don't know me, but I'm Pete and I've written this. She said, oh, yeah, I've seen, I've heard about this. This is really great. Where can I get some copies from? I said, I can't afford to print it. And, she said, I would do that for you. So I said, how many do you need? I said, oh, 5, 000. That'll probably keep you going for a year. She said, okay. Anyway, it went so bananas like that in the first year, a hundred thousand copies had been sent out. Healthcare professionals were using it with their patients like as a guide and to get them started in self-management.
And I think the second year they printed off another 100, 000 and I think the last year was about 40k or something like that. So I was just, you know, one of these things in the right place at the right time. Then I got invited back to Germany again, because this, a guy called Reinhard Sitzel, he'd heard about me and he'd heard about The Pain Toolkit, and he was interested in hearing more about it, so I went back to Germany and had a chat with him, and it turns out we were really good buddies, and he got his daughter to translate into German, he then sent it off to his buddy in Switzerland, so to get it printed off. But as you know, in Switzerland, they just can't print things off in German. It had to go into, French and Italian. So now there's a German, English, da, da, da, you know, and then anyway, long story, short, over the years that company has been, it's all been translated into different languages, Spanish, Norwegian, Russian, Portuguese. I can't remember all of them. I think even the Aussies, the Australians, they did a couple of versions, a Chinese version and a Greek version like, you know, so it's just, it just went a bit wild really like.
But it's just a very simple booklet to help people get, get off the start line really, and the healthcare professionals like using it because it's like a little mini, like a mini workbook, so they give them the booklet to have a read through, then circle two or three of the tools you want help with right now and that's what they do. And then, so, see the patient's doing something, they've got to do something. So, they've read it, they've circled things off, they take it back to their healthcare worker, and then they work through it so when they feel confident with those two or three tools, they then choose another two or three.
I mean, it's not rocket science. It's just easy peasy lemon squeezy as I call it, you know.
Helen: Sounds amazing, Pete. It really does sound amazing that you've put together some practical tips for living well with pain, and now it's, it's gone well, global really if it's in Australia and all over Europe and everything. And you said that people circle the tools that they want to use. Can you give us a couple of examples of what the tools are?
Pete: You know, I'll tell you what I'll go through them with you if you like if that would be useful?
So Tool One is accept that you've got persistent pain and begin to move on. I think that's a, that's a tough one for a lot of people because, you know, to think that. that you accept that pain is going to be with you. I look at pain as being a bit of an unwanted passenger in your life, you know. And it's about accepting the fact that, as I had to accept it, that pain was going to be with me for a long period of time. As it's turned out, it'll probably be with me until towards the end of my life, but it's acceptance that, is going to be with you for so long, but it's not going to be…You see, I'm back in the driving seat, it'll be around with me, but it's not in charge anymore, you know, I'm the boss like, and I've got on with my life. So, but for a lot of people acceptance can be a tough one. So that's tool one.
Tool Two is about getting involved, building a support team. Now I've got to be honest with you, I've not actually met anyone yet who's actually been where most people are struggling with persistent pain and they sort it out on their own. We need that team and it's like I always think, think of yourself like a bit like a football coach. You choose people who you want in your team to get so that you can be a winning side, et cetera, you know?
So, and the same thing as well, back then, you know, I had to think about who do I want in my team? I needed someone on my side, so it needed a selection. Perhaps I need a few healthcare professionals that I could go to, obviously supportive input. I needed people, people around me as well, like friends and family, et cetera, to be there to support, so it's about, getting involved in the building, building a support team.
Tool three is about pacing. I always say to people, if you don't remember anything else about any of my presentations, remember about pacing because pacing allows you to do more throughout the day but without increasing your pain or your symptoms.
Tool four is about learning to prioritise and plan out your days because we're all over the shop. You know, we're very erratic, because you've got your medications going on. Doing all your thinking, perhaps you're being pulled in different directions back with family and work commitments and stuff like that. But if you learn to plan and prioritise what actually needs to be done, because again, see, we want to try and keep up with everybody else, but we need to have a little bit of a list. Now, tomorrow, I always say to people make your list the night before and then prioritise it. Well, what can I do and then pace it out throughout the day.
Tool five, setting goals and action plans. As I always say to people, if you don't know where you're going, it's unlikely you're going to get there. So, to me, setting goals and action plans is so important because you can look back and learn from what's gone on in the past, but now we're moving forward. I know I always say to people to get them in the hang of setting goals and action plans is, set yourself some fun goals just get you going like, so it could be that you meet a buddy for a coffee or go do something nice, you know, perhaps go to the seaside or something like that. So set your goal, but think about how are you going to achieve that goal like, you know, and when I'm teaching like, there's a little process I'll go through. It's a bit too long to go through it now. But it's a nice little process, about setting goals and action plans. But just keep it simple really. But have fun as well. You know, that's the main thing about self-managing pain is we need to put the F U N in it. Fun, have fun as well. Like, you know, I always call it buy yourself an ice cream from time to time.
Tool six is about being patient with yourself because we want to get there and we're in a hurry, you know, because we get a few winters under our belt and we get a bit frustrated, but we've got to be patient learning how to manage pain. You know, it took me a year to get off the meds like, you know, Dave, who I work with now, he's another self-manager, it took him the best part of two or three years to come off the meds like, you know, But we have to be patient with ourselves but sometimes we can be in too much of a hurry.
Tool seven is about learning relaxation skills I learnt back in the Input Program A relaxed muscle feels less pain than a tight one or a tense one. So, you know, if I've got to do any journeys now, I do a little, learn to do a little bit of meditation. I learned it from, that's what I learned off of, YouTube, really, of this, Tibetan monk. Because my brain's always ticking over, thoughts coming in, going out, going up and down. You know, I'm all over the shop sometimes. But, yeah, I learned from this little Tibetan monk about meditation, which is concentrating on breathing. You know, just breathing in, breathing out. And he said, that's meditation. I thought, mate, I can do that.
Tool Eight is about stretching, exercising. Again, the, the physios nowadays, they call it meaningful movement. The reason why they call it meaningful movement because when you say to someone, you need to learn such an exercise, if they like doing it and they choose to do it, they're more likely to keep it up.
Number nine, keep a track of your progress. That's not about a pain diary in such to where you're tracking how much pain you are in during that day because it's not for that's not really helpful, but it's about keeping a diary, it's sometimes just keep a track. I did actually put together something called, how am I today? It's like a little bit a like a report card for themselves. Like, you know, they can say, well, how am I doing? You know, am I doing a stretching? They can show it to their health care worker if they need it. Well, yeah, look, they look like you're struggling there, so perhaps we can work on that a little bit so tracking your process is important.
Tool 10, we talked about it already, have a step back plan.
Tool 11, going back to teamwork. But teamwork is so paramount it's why I've mentioned it twice in the twelve.
And the last one there is keeping it up and putting it into practice really. And the thing is, I've added in recent copies of The Pain Toolkit. I've actually had to learn about being resilient. We have to be resilient, we need to, uh, not toughen up, but we're on a long old journey here, like, and we need to think about it.
Helen: Absolutely. So if you were going to say one key message to people out there, maybe they're living with long term pain themselves, or they care about somebody who lives with long term pain, what would you say one key thing to those people out there?
Pete: Keep it simple.
Simple as that. Get some help, get some support. Yeah. So healthcare professionals, all healthcare professionals are taught something called a medical model. Okay. And sometimes they forget that we haven't, we wasn't sitting beside them in medical school. And, you know, they just overcomplicate things. It's nothing personal. Yeah. It's only observation. I watch them on social media. I think to myself, boy, mate, you know, why are you complicating this? Because when you breaks down pain management, self-management, it ain't got your science and, you know, when I was on the Input Program, and they were talking about the pacing, about taking a break before you think you need to, and I'm sitting here always saying to myself, well, that's common sense in it, but I wasn't doing it, you know, common sense to take a, take a rain check with all of us, you know?
Helen: That's a great key message, Pete. So really that message is for the healthcare professionals as well, who are supporting people, hopefully to self-manage their pain and moving away from a, a kind of medical approach, but particularly for the people who live with pain long term, simple, practical skills for managing that and planning ahead to manage it in the long term, actually ends up with you having fun, more quality of life than trying to fight it and use things that don't work. And, I mean, I'm, you know, you know, that I, I work in this area myself. And so, part of my work is doing exactly what you're talking about is helping people to manage living well with their pain and building that confidence and quality of life, despite having that ongoing pain. And with the Pain Toolkit and the other things that you've mentioned, we'll put links onto our show page so that people can follow that up and find out more if they'd like to. But at this point, I would like to say, thank you so much for talking to us here, Pete, it's been great to have this conversation with you, and to hear about how you've come from being really managed by the pain and overwhelmed by it to living such a good quality of life and helping other people to do that as well. Thank you.
Pete: Well, thank you. Thanks for inviting me on to do this podcast.
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