Hello Amy

Hi Iain. How are you?

I’m great. Yeah. I have not used zoom before. So, yeah, I’m kind of trying to figure out how it all works. But yep we seem to have made contact.

Yes. Yeah, it’s a little bit intuitive. It shouldn’t be too tricky. If it drops off for any reason. I’ll just like re-instigate the call.

Yeah, brilliant. And I can see that I’m recording your voice as well, which is good, because it would be a little bit annoying. If we had an interview, and then I realized afterwards that I hadn’t been recording it. That would be a disaster. But yeah, it looks good. Yeah, how are you today?

I’m not too bad. I might be a little foggy today for which I’m going to apologize in advance. I’ve had to take some pain meds this morning when I woke up so – it’s not hit me too hard. But if I sound a little dense, then please give me a bit of leeway.

Do you know that was in chapter seven – concentration and cognitive abilities. [Yes]. And I’ve written brain fog next to it. [Yeah.] And I can’t remember the exact phrase you used. But it was something like, you know, please bear with me. I’m feeling a little bit stupid today or something like that.

Yes. Yeah, that’s right. So it’s it’s sort of one of those days at the moment.

Well, I’m sorry to hear that. Being in constant pain, and of course, taking pain medication it can really have an effect on your ability to sort of concentrate and you know, solve problems or put a coherent train of thought into your into speech can’t it?

Yeah, it’s, um, and it’s not like a black and white. That’s what I find kind of annoying about it. It’s like, it’s not you’re either like competent and functional, or you’re not. There are shades of grey and sometimes it can feel like I can, I can probably push through this and I can figure my way out of this problem if I just think about it, and your brains just not there. And sometimes you can’t quite tell when those days are happening.

Yeah, totally. Yeah. And sometimes you just need a little bit more, as you say, a little bit more leeway a little bit more time. It’s not like you’ve become a kind of when I say you, I mean one, a person in general. [Yeah]. Just an idiot. [Yeah], you still a functional human being, you just maybe need a little bit of consideration.

Yeah, yeah, I think. I think everyone is fairly hard on themselves in general, but remembering the, the thing that I like to do when I feel myself getting a bit hard on myself that that, like, ‘Oh, I shouldn’t be asking for more time or patience from people’ is like, [Yeah], well, if it was a friend of mine, what would I [yeah.] And if it’s a friend of mine, I would always be like, of course, you know, it’s fine. If you know he or she needs a bit more time or space or you know, whatever they need. So that’s what I try and like then use to judge how I think it’s okay for me to act and ask other people to do things.

Yeah. Do you know what, changing the subject I’m trying to place your accent. It sounds, I’m from the I’m a Brit expat living in Sweden, and you’re a Brit expat living in Canada. [Yeah] and I’m going to guess – I want to say West Country?

Close! I – some of my family is from the West Country No, I was sort of Swindon area.

Well that’s not far away is it? Wiltshire.

Yeah, exactly. Yeah. So um, yeah, I mean, I moved about a bit as well. So it’s and I think that accents definitely dulled since I’ve been in Canada so long but yeah, definitely. Definitely still Southern English.

It is there. Yeah, for sure. I’m from Dorset actually, but I lived and worked for a long time in London. So when you know people always say I hate they say they hate listening to recordings of their own voice. [Yeah]. and when I hear myself played back, it sounds very, sort of London and a little bit. Yeah not that that’s a bad thing but i think ‘do i really sound like that?’

It’s never what you think. Right? [no exactly Yeah.] First time I heard myself I was like, ‘I am not that posh’.

But you are! You are that posh! Yeah. Okay, so, um, do you mind me asking you how long have you been in Canada?

Coming up to nine years now? [Okay] so yeah, really love it here. And I’m sure you you must sort of feel the same in Sweden of that, like the general quality of life

It’s good. Yeah, I’m in the north. And it’s – there’s no big cities near here. I live really out in the, middle of nowhere. I imagine. There’s a lot of similarities in the climate, and the landscape and the wildlife, certainly the wildlife, between where you are and where I am, for instance we have – Well, they’re called elk here but effectively it’s moose.

Unknown Speaker
Yeah. A lot of snow right?

Plenty of snow. Yeah, it’s just unbelievable amounts of snow. You know I grew up in Dorset, some winters we would get no snow at all. And when a bit of snow came, and even better if there’s enough snow that we didn’t have to go to school because the buses couldn’t run, It was just that really exciting.

Yeah, it was like yeah, you know, the world stops when there’s an inch of snow.

Totally that’s that’s what happens. Yeah, yeah. But here you know when the first snow starts to settle, you know, you’ve got a lot of work ahead of you. [Yeah], for for several months. [Yeah.]

Yeah. Same here. It’s It’s long,

I’m sure. Yeah. So I saw it well obviously I’ve read your book ‘taming chronic pain; a management guide for a more enjoyable life’ and I’ve had a look at your website. amyorrbooks and you write fiction as well?

I do. Yeah.

I think it’s we’ve kind of started off down this route a bit of a sort of getting to know you kind of opening. But I, I couldn’t find much more detail about you actually. For instance, normally if when people write – I’ve spoken to lots of authors and reviewed or kind of interviewed people about books on chronic pain, particularly chronic back pain. [Yeah],
Generally people write a lot of detail about their kind of backstory. And one thing I noticed, you know – when you write any kind of bit of content, whether it’s just a short blog post, or or, you know, a complete book as you’ve done – you have to kind of decide what the frame of reference is going to be.

And I think you kind of left yourself out quite a lot. Obviously, that was a conscious choice. You don’t mention what your chronic pain condition is, although I understand you mentioned You’d sort of dealt with the medical systems in two continents. So clearly it’s been like Europe and, and and in Canada. [Yeah]. And you’ve been there for nine years. So it’s something that’s gone on for a very long time.

I’m not asking you to say what your condition is. Obviously, you decided not, not to mention that. But it just struck me that that difference between what other people do and what what you’ve done.

What’s really interesting. I mean, I think I don’t have any particular reticence about talking about my personal conditions. It’s just, I have several. So it can get a little bit complicated.

And it’s one of those things where I was trying to make sure the book was as applicable to as many different types of pain as possible.

I understood that because it’s like, General general rules, well not rules, but general kind of lessons that can be applied to all kinds of different conditions.

Yeah. Because like a lot of it even if The individual pains themselves are different. A lot of the effect on your life is the same. [Yes]

So like, yeah, like I am. Yeah, I’ve been dealing with with stuff for years. And it’s really only recently. I mean, since actually, since I’ve had my first appointment with a chronic pain specialist, [yeah], that I really started to get a handle on. Okay, No, there are. Like their names for these things. And chronic pain exists and I am certainly not the only person in it.

And yeah, it just like it. It only really started congealing into solid form for me in the last like, like five to six years. Really? [Yes. Yeah]. Um, but yeah, it’s the book was I didn’t want it to be like autobiographical. [Yeah,] I’m just like that. So I don’t necessarily think that would have added very much to it. But yeah, it’s it’s a very tricky trying to keep it clear. When you have You know, like five or six different conditions that are all [Yes.] affecting each other.

Yeah, yeah, that makes sense. Yeah. And, yeah, so you’ve taken the lessons that you’ve learned and sort of put them in a format that can apply to people who are well, I guess there’s not gonna be many people who are in exactly the same boat. As you. And I think it works very well. Yeah.

So the intent was to try and make it as, as accessible as possible.

Yes. Again, that’s another kind of balancing act, isn’t it? Because the subject is complicated, and you can’t sort of dumb it down too much can you?

No, and it’s, and every aspect of it affects every other aspect of it. So it can get infinitely complicated very quickly. And that’s just one of those things that like, everyone, I guess, day to day has to try and figure out what’s at the top of this particular pile of worries today.

Yeah, yeah, totally. So the book starts appropriately enough with something called getting started. And you say that there’s no miracle.

Yes.

So there’s not a solution to chronic pain. And it’s more complex than that.

Yeah, it’s, um, I think very understandably, people want that to be a definitive answer when they’re hurt. And they want there to be a an easy solution.

Yeah. That’s exactly what people want.

Yeah. And that’s, I mean, that’s very understandable. It’s horrible to be in pain and you want it to end as quickly as possible. But, unfortunately, for the vast majority of chronic pain issues, that’s just that’s not realistic. There isn’t a simple this is why this is happening. And here’s what you do to fix it.

It’s much more common that you’re going to have to come up with like a whole range of therapeutic tools and coping mechanisms and ways to deal with your day to day so that you’re able to sort of figure your way through the pain rather than just, you know, shutting your eyes, crossing your fingers and hoping the doctor can wave a magic wand and fix it.

Yeah, yeah, totally. A strategy, if you like.

Yes, absolutely. And I think it’s helpful to think of it in those terms, because I think this was something that I said somewhere quite near the beginning of the book, thinking of it as – I love this analogy, because someone said this to me once and it really stuck – of your mind is the coach and your body is the team.

And there are lots of different parts of your body that all do their own function that they have to work together and your mind has to be the thing that brings it all together and set goals, and figures out how you’re going to manage individual team players. [Yeah.]

So I think having – calling it a strategy and having a strategy and being methodical about it, [yeah], is a big part of like de-personalizing pain. I think pain can make you feel like you personally are like a failure or worthless or you’re useless. Or you’re broken and and it’s, it’s obviously very easy to take pain personally because it’s personally happening to you. [Yes], but it isn’t you and being able to like mentally draw that barrier of ‘Okay, it’s happening to me, but it’s not because of me and it’s not. It doesn’t define me.’ I think can be like a helpful therapeutic tool.

Yeah. You mentioned something else in that first in the Getting Started section; denial.

Yes. Yeah. Which is a I’m constantly amazed at how powerful denial can be [Yeah,] I think and this is something actually that struck me really strongly when I was reading something the other day, and it was giving statistics on back pain, in particular, because back pain is, I mean, obviously, as you know, the most common form of chronic pain and the vast majority of people and I’m trying to remember what the statistic was. It’s something like, like more than half of people who experienced chronic back pain. Don’t ever seek help for it. [Yeah.]

And that, to me is like absolute denial, because it’s, you’re just sort of hoping you’re either hoping that it goes away magically or you’re just trying to pretend it doesn’t exist. [Yeah] Just trying to work through it. Get through it. Just be like [get through it Yeah] just I won’t think about it. I’ll worry about it. It is what it is. And I’ll just get through it. [Yeah.] And that’s not the path to feeling better or doing things that you need to do to try and feel better.

Yeah. I think you’re totally right.

I mean, like, and I’m not gonna, I don’t like to look too harshly on the people that are in the denial stage and just, you know, head down, get through it, because I did that for a really long time. [Yeah.] And it just hadn’t occurred to me that there was another option.

And I think once you know that, there’s another option once you’re sort of willing to admit that, okay, there’s actually something properly going on here. And maybe I’m not, you know, going to magically solve it myself, then that’s, that’s half the battle in my mind.

Yeah, makes sense. I saw on your website that you were involved, in a previous life, in the financial world, and when just, not professionally, but just through my own sort of personal financial planning. This kind of stuff, I remember there’s a phrase that pops up quite often on like discussion boards on the net and stuff. And it was DYOR. do your own research, and I haven’t heard that phrase for a little while. But that was in your first section of your book as well.

Yeah. Um, yeah, I think being able to draw your own conclusions from, from reading and understanding a wide variety of sources is an invaluable skill just in life in general. But it’s, it’s really important when you’re thinking about what’s going to work best for your health care, because I don’t care if you’re Einstein, you’re not going to be able to think of everything. [Yeah.]

And there’s just such a breadth of of tools and therapies and other people’s stories and other people’s clever solutions to things that [Yeah], you just have to read a lot and do a lot of research and then it might be that 95% of it doesn’t apply to you or you think

Exactly right. Yeah, some things are going to resonate with you have that’s that describes my situation. Exactly. Whereas other things you read you, it won’t make any sense to you.

Yeah. And and you just you have to have a bit of faith that you are not the only person who is experiencing the type of problem that you’re experiencing and that other people have gone online and talked about it. [Yeah.] Which every which they have. I mean, that’s just yeah, there are hundreds of websites and blogs and Facebook support groups and all of the rest of it.

So yeah, you just you can’t, you can’t solve everything in your own head. And I think some of the best descriptive phrases for symptoms and solutions and clever hacks to make your life a bit easier. They’ve come from like, just random web articles and talking to people online and it’s just Yeah, as you said, you don’t necessarily know the value of it until you hit something that resonates. And then you’re like, Oh, yeah, okay, this.

Yes. Yeah, absolutely.

So you the book split into three parts. And part one, you’ve called the basics. And chapter one, knowing your pain and you describe what pain actually is, and the purpose of it and how it kind of goes, particularly for people with chronic pain. How that sort of goes a little bit wrong.

Yes, I think it was. I think it’s important to start from the basics because something that I found both when I was first getting diagnosed with fibromyalgia and when I was reading a lot of books about chronic pain and how to deal with it.

Like just the definitions aren’t often they’re they’re not all always available to you that this might be something that other people learn in childhood and think is really obvious. But from the number of people I talked to, when I was researching for the book, like a lot of people don’t know how to describe their pain, or properly categorize it, or how to think about it, and that might not seem important until you’re sat in front of a doctor

Iain Barker
Yeah, yeah.

Amy Orr
And the minute you sit in front of the doctor, and they say, Okay, what does it feel like? And you sort of have to think, well, it hurts, like, ‘Okay, what is it what, you know, how does it hurt?’ and that sort of how does it hurt is something that a lot of people don’t necessarily think of the words they could use and what different types of pain can feel like and knowing how to frame it and think about it helps you with doctors, but it also helps you just give a face to it.

I mean, that’s especially helpful for people who don’t ever get like a proper diagnosis. [Yeah]. Being able to say, Okay, well I know that I have chronic pain with occasional breakthrough pain and you know, these what these things mean. Again, it’s part of the de-personalizing. It’s not just you have random hurt and it’s your fault.

Breakthrough pain is a term that I’ve not heard before. So what exactly do you mean when you say breakthrough pain?

So breakthrough pain is a category of pain where it’s not. It’s sort of the tougher between chronic and acute. So it’s where you have a chronic pain that is known about it’s established, you’re managing your chronic pain, however you manage it, but you suddenly get a spike in your pain.

It’s like it breaks through your normal chronic pain management. And becomes acute for short period of time. So it’s not you know

acute pain would be you break your leg, while;
chronic pain would be you have chronic back pain and
breakthrough pain would be where you’ve had chronic back pain for a couple of years and you’ve managing it with physio and maybe some, you know, anti inflammatories and some pain relief, but occasionally, apparently at random or possibly to do with a change in lifestyle, change in meds you suddenly get acute back pain where it was previously chronic and you’re suddenly incapacitated.

Well it turns out I’ve had breakthrough pain. I just didn’t know it!

Yeah, it’s um, it’s I think it was originally coined as a descriptor for a cancer patients who were experiencing generally alleviation of symptoms as they went through treatment. But then it was like the treatment suddenly failed for a bit and they had a lot worse symptoms again. [Okay. Yeah], it’s like I think pretty much everybody will have experienced the three major types of pain at some point in their lives, right? Just whether you notice it like I would call a paper cut acute because it really hurts but then it’s like five seconds later.

Yeah. And you recommend creating a pain profile?

Yeah.

One of the hardest things about chronic pain is getting really any – well, I mean, it depends what the chronic pain condition is or the source of the chronic pain, but something that’s extremely common is people not really being able to get definitive answers or help from doctors. [Yeah]

I’m like not being believed is a big issue in the chronic pain community, but also just like, doctors aren’t miracle workers, if there’s just an amorphous pain and they don’t have anything to go on, what are they supposed to do? [Yeah.]

So a pain profile is a really useful thing to use to understand your own boundaries and your own pain and what affects it, and what helps it and to give you those guidelines internally, but it’s also really helpful to take to a doctor’s appointment, and be able to give them data, right, that’s what doctors are going on. They’re going on data and because pain is invisible, and pain is silent. They don’t have any data to go on.

So the more that you can tell them about how it hurts when it hurts, how quickly it comes on. Like if it refers anywhere, how often does it happen? Are there any triggers are there medications that help. Or medications that specifically don’t help. It might be that you’ve had back pain and you’ve tried Advil and Aleve, and a bunch of the others, and some of them help, and some of them don’t.

And that’s useful information for a doctor because they can start to say, ‘Well, okay, an anti inflammatory isn’t working, but the pain relief is, what do I think that means?’

Yeah. So you need to kind of manage your relationship with your doctor, I suppose is what you’re saying?

Very much so. I think, especially back in Britain, and it’s a little bit less over here, and I’m not sure what it’s like elsewhere in Europe, but I was always sort of told the doctor knows everything.

Yeah, exactly. You got a problem, yout go to the doctor and the doctor will fix it.

Yeah. And you don’t you don’t question what they’re doing. You’re not…at no point did I ever think of that as like a partnership? Or that [Yeah] I was as responsible for managing my health as he was. [Yeah]. And it’s only really recently and it’s definitely changing more towards, you know, patient led care.

It’s only more recently that it started being like, actually, these are people, my doctors I see sometimes once a month and sometimes, you know, two, three times a year, but it’s an ongoing long term relationship. And I kind of need to treat it like that. And it requires a bit of work. But the more you put into it, the more you get out of it. [Yeah.] Yeah, we’ve got to stop thinking of doctors as like miracle workers. I think that’s a lot to put on them.

Yes, yeah. And it goes back to what you were saying earlier, you know, people in pain, they, when it gets to a point where it’s gone on for too long, or it’s too severe. They think I’m gonna go to the doctor and get a professional to fix it.

Yeah, it’s, it’s going to the doctor is like one of those things that that makes it someone else’s problem.

Yeah, exactly. And then people get really angry when they can’t magically fix it for them.

Yeah. Which I mean, I get because you got to think about like the level of hope that your pinning on that of [Yeah], you just you need to believe that someone has some control over this.

Yeah, yes. You go on to talk about age and gender and pain.

Yes.

As a white male. I always get a little bit kind of wary when I read chapter headings like that. how’s this going to be my fault this time kind of thing? [Yeah] But I thought when I read it actually was aimed at, at me, unusually being the kind of victim of this, in that I first started getting started getting back problems at the age of 24. And I was embarrassed by it you know, 24 years old.

You think you should be healthy? right?

Exactly. Yeah, back pain -What’s that about? And the kind of the whole thrust of that section of your book is you know, young people do get chronic pain and society doesn’t accept that. As a man, you shouldn’t be expected to like tough it out any more than a woman.

Yeah. Yeah, I think. I think it doesn’t matter what age or gender you are. You’re screwed either way because there is a societal expectation. You’re old. You’re supposed to be in pain. You’re getting old. That’s just what happens. You’re young, you’re supposed to be healthy. You’re a woman, you have a lower pain tolerance or you know, people think you have a lower pain tolerance, you’re whining. You’re a man, you’re supposed to tough it out.

Like everyone is doing that to each other, regardless of who they are. So, yeah, it’s I think, for me, it’s a lot that that particular bit of the book is really just don’t judge a book by its cover because you can’t see pain. [Yeah], and people put so much pressure on themselves to conform to what they think other people are expecting of them.

I was embarrassed. I was embarrassed as a young guy to say ‘I’ve got a really bad backache.’

Right? Because you feel like there’s also like I always felt and I don’t know how common this is, but I always felt like there was a connotation there of like, you must be doing something wrong because everyone else is you know 24 and is perfectly fine in the back. [Yeah, exactly]. Yeah, like maybe I’m not like for me it was like maybe I’m not fit enough maybe I should be you know,

I had someone say exactly that to me. You know?

Yes.

You’re a young guy. If you’re feel reasonably fit, you shouldn’t be getting back pain.

Yes. Well, that’s helpful. Yeah, I know.

OK then, I must be wrong, you know, because I’m reasonably fit. So you know, I must be making it up.

Yeah. It’s um, it’s kind of scary. I mean, I had so I had, I’ve had chronic back pain for God. I mean, forever. I can remember going to physio when I was like 9 or 10 years old for back pain.

No way! Oh that’s sad.

And it being like, all it’s because you’re carrying a heavy school bag. Just Just don’t carry the heavy school bag around the back be fine. And that’s something that I’ve heard is quite common apparently with like children like under 18 to have back pain of it’s down to lifestyle stuff that

‘Oh, you’re hunched over a desk all day at school, you’re hunched over your computer. I mean, what do you expect?’ [Yeah]

Yeah, it’s it’s always making it your own fault somehow. [Yeah]. Yeah. So like, I completely get that it’s, it’s really tough for guys to be able to say, Actually, you know what, this, this hurts and I have to take care of myself now.

Yeah, you really do have to prioritize self care.

Which is just really hard to do, right? Because when you’ve got, like the people are, they might be lovely people who genuinely care about you saying, ‘Well, you don’t have it that bad, you know? I’m sure like you’re walking around, you must be sort of okay.’

Or, you know, ‘well, everyone gets this from time to time.’ Especially back pain because it is known to be very common, right? Like, ‘oh, everyone, everyone has a bit of back pain times time you just, you know, tough it out and it’ll get better in a few weeks.’

And having to listen to that, but then make the right decisions for your own body and your own self care. It’s really hard.

Iain Barker

Yeah. It’s all about priorities yes.

Amy Orr
Yeah. And you have to put yourself as much as it sounds very selfish. You have to put yourself first.

Well, yes. Because if the if your condition whatever it might be, puts you out of action, then you’re no use to the people who depend on you.

Amy Orr
No use to anybody, right?

Exactly it’s like the thing on the aeroplane, you know when the masks drop down. Put your own mask on first so that you can then help the people who are depending on you.

Amy Orr
Yeah, it’s exactly that.

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