Carol's story of living with pain

OK, cool. Can I get you to introduce yourself? Um, my name's Carol. Um, and I live in South West Scotland, and I'm just about to be joined by one of my cats. Hello, cat

Thanks, Carol. Um so, Carol, uh, what's the cat's name? This one's called. He he? Hello, Hecker

She likes meetings. Sorry. No worries

She's more than welcome. Can I ask you? Like what? What are you passionate about? What makes you Carol? What makes you tick? I'm passionate about nature I'm passionate about, um, my paganism. Um I I run a big pagan camp, and I'm you know, it's sort of It's It's what I would recall recall my job

Um, really, I'm passionate about singing, um, and community and people being nice to each other. Absolutely. Absolutely

So what's your kind of favourite thing to sing? So, like, have you got a a type of music? You like singing? Yes. Um, a cappella folk music. Um, mostly English folk music

Although I also sing in choirs where we sing all kinds of Balkan and Georgian music as well. And I really love that I loved Balkan music. Great

I'm in a Balkan woman's choir now, which is lovely. I mean, I my husband's from Lithuania, and when we I went to stay with him in his house, his friends came around and they sang lots of, um, traditional Lithuanian songs, and it was just such a different experience, you know? It's just so wonderful. It's got they they use different harmonies

Um, yeah, I could listen to it for hours, you know, but not as good at singing it, though, as I am as singing the English folk music. You know, I'm sure you do a lot better than I do, because if you heard me sing, you probably never wanna hear me again. Everybody can say, Yeah, this is probably not very true because I certainly can't say anything, can I? Um, so, you know, we're doing this project about people living with pain, So I wondered if you could share with me

What? You know what role does pain play in your life? Pain plays an enormous part in my life because it it, um it it kind of limits what I can do. It, um, informs what I can and can't do completely. Really? Um, I from the minute I wake up in the morning

I have to decide what I'm going to be capable of doing that day. Um, and as I'm getting older, it's getting, you know, more and more overwhelming. Really? So although I suppose when I was younger, although the pain was there, I was able to cope with it and just stick it to the back of my head and just get on with it, you know? And now I can't just get on with it

And some days I just can't function, which is really annoying. I hear you. And how have you managed to? So you said that, like when you were younger, you were able to stick it back your head

How have you found, Like, kind of getting support or managing it Like what works for you. Um, at the moment, what works for me is an extremely loving and caring husband. Um, and a GP who is actually listening to me instead of coming out with the Oh, well, we all get aches and pains as we get older

Um, and who talks to me about my, um, my own ability to to to deal with it and actually supports my using the CBD oil, which is in fact, the only thing that keeps me going on a day to day basis. And he's very, uh, happy for me to do that because it means I don't take all those nasty prescription drugs which mess up your kidneys and your liver. So and being a bit more honest about it, actually, with people you know, um, actually being able to say to people, Look, I'm sorry, I can't do this today, whereas before I suppose I would always just go

Yes, of course I can. Yes, of course. You know, and and I would struggle, and I would push myself, and then I'd suffer for the next two or three days and not be able to get off the sofa

So I think being honest, But I don't think you can be honest unless you know, you have got support from your GP or or whatever. You know, um, I got fed up of being just told I was either imagining it. It was all in my head or being given even stronger painkillers, you know, um and that was sort of that felt as if I was being fobbed off and I think that's quite a common thing with with chronic pain

Um, so I just deal with it myself. Mostly. I've I've learned over the last 50 years, I've I've learned how to how to deal with it

What, um, how does it make you feel when you're being fobbed off? Like, what impact does that have on you? Well, you begin to doubt yourself. I think. You know, I I got to a point when I was beginning to imagine that it was all in my head

And perhaps I was not exactly making it up, but I was I was exaggerating it. I I think Oh, well, you know, I is this Am I just experiencing normal things? Am I wasting the doctor's time? Should I not bother going, um, and then suffering in silence? Really? Um, and then getting well, I mean, you know, getting depression, suffering with a lot of depression. I've had depression on and off all of my adult life

Um, and there was I changed the GP in my surgery because the one GP was just basically not believing a word. I said, um, and whatever I symptom, I told him I had, he said, Oh, well, you know, I've had that as well, and it's Yeah, I don't see that one anymore. Um, I see the other doctor in the surgery, and he's the one that said he was the one that actually told me you have fibromyalgia

You know, um, which I had it. It had never occurred to me. And it was quite a relief to think this man has listened

He's heard me, you know, before that, for years, I I I was hiding it. I was pretending it It wasn't that because I began to think that it was my fault. I think that would be the way of putting it

Why? Why did you think it was your fault? Because I thought I was time wasting. I thought I was wasting the doctor's time. Um, I was taking up valuable time that they should be spending with people with real illnesses

Um, I I mean, I was brought up in a household where we weren't allowed to be ill. Um uh, you know, I know my mom sent me to school with whooping cough because she thought I was making it up. Um and so I've got that kind of thing going in my head right from being a child that, um you're probably making it up

Um, I know the thermometer would always come out at home when I was a kid, and if it didn't reach a certain temperature, then you obviously were faking it. Um, and I think that's probably just stuck in my head the whole of my life, you know that. Perhaps I'm faking it

Oh, dear. You know, and it didn't help. When you have a doctor who thinks or or implies that I should say absolutely

And do you like, how long have you lived with pain? For? I've lived with pain for 52 years. No, um, I had an accident when I was 18, and, um, it has had a AAA knock on effect on the whole of my body. Uh, the whole of my spine and all the nerves that come out of your spine

And, um, I had four years of physiotherapy when I first had the accident, and I had my neck stretched, which is not a pleasant experience. Um, I I couldn't move my arms my shoulders right from the beginning, and that got worse and worse. And in fact, it got to the point where I was just not using my arms above the elbows

I was just like, you know, even when my Children were little like I couldn't pick them up out of the cots or the bath or whatever, Um, until I had surgery on them and they had to break them open again for me. Oh, lovely. Um, but the whole the whole of my spine was impacted by that, uh, that accident that I had, um, yeah, and and sort of

Then I got I had various supposed treatments, uh, which made it worse because it was, um, wrongly, wrongly diagnosed. You know, being treated for a slip disc when you haven't got one. It is pretty awful being treated for, um um, AAA joint that's come out when it hasn't It is is pretty dangerous

So yeah, it's been. But since then, since I was 18, really? And like thinking about your journey with pain that what would you tell your younger self? Oh, um, I would probably tell my younger self to speak up and to not be fobbed off to to refuse to be fobbed off. Um, speak

Yeah. Speak up. Really? I think, um, and make sure people can hear what you're saying

And don't don't be put off when people tell you it's all in your mind. I was too scared, really. I was a very anxious child, Um, and an anxious teenager, Um, and and? And I didn't have the courage to do that then

So, yeah, I think that's what I do. Um, really, really good advice. Um, a lot of people have talked about trauma and the history of trauma in their lives and stuff or traumatic instances and pain

Um, have you managed, like, has that played a part in your kind of journey with me? You're talking about childhood trauma and any kind of Well, I mean, this is I think where, um, the doctor got this. Oh, it's all in your mind thing from, um, because I've not had a particularly easy life. Um, one way or another, um, massive an anxiety attacks anyway, because that's the way I was born as it were

And, um and then sort of Yeah, something in my childhood. I don't want to talk about, uh, not major, but enough for me to have clocked it in my head. Um, and divorces and Children

I've got a child who refuses to speak to me because I was a hippie and the other one who has had paranoid schizophrenia for the past 24 years, which is quite a traumatic thing to be dealing with. Um, so, you know, life's been a bit of a sort of hard struggle most of the time rather than one specific trauma. The biggest trauma in my life was, um, landing on my head when I was run over by a car, which is, you know, that was, I would say, singularly, the most traumatic thing that's happened to me

Thank you for sharing a bit about, like, your experiences. So I was like, I was really interested in whe when you talked about, like, nasty medications and the effects they have on you. So have you been encouraged to take lots of pain medications and like and And you talked about like this Really good doctor versus this Doctor didn't listen

So what has, like, your treatment? Like what? What? How have people wanted to support you? Manage your pain? Um, well, of course, the, uh, thing that I was tape put onto straight away was gabber Panin, Um, and doses of gabapentin, which was so high I couldn't function as a as a human being. If I carried on with that dose, I would have been sitting on my sofa watching daytime TV for the rest of my life. You know, um, I was given anti inflammatories, which made me feel ill

And I was given painkillers. I can't take codeine because I have, um, irritable bowel, Which means that you know, I can't take codeine in any any form. So it's OK, what can I We'll give you tramadol instead? So, yeah, let's get you addicted to Tramadol as well, you know, And I did

I was I was taking a huge amount of tramadol without anybody checking up on it for for quite a long time until I changed to the other GP in the surgery. And he heard that I wasn't happy doing this that I was scared of, um of being without I was referred to, um c BT C BT? Yes. C BT

Um I was told I was being referred to a pain clinic. And then when I got there. It wasn't a pain clinic

It was the psychologist who was giving me C BT and basically told me that I had to make my pain. My friend, we lasted four weeks and I just went stuff, you mate. And I've just spent the last 40 odd years trying to shove it to the back boiler and you're wanting me to just live it right up here all the time

And that's how they didn't do any good again. It was that that, um not hearing that my pain was actually rooted in injuries to my spine. It was not OK

When you're anxious or depressed or traumatic experiences happen in your life. Obviously you feel things physical things a lot more sharply. Um, but that's not why they're there in the first place, you know

I know. For example, I'm having a fibromyalgia flare up this last few weeks, and I know it's because of the stress that we're going through in the family at the moment. But all of that fibromyalgia probably originates from the damage that was done to my neck when I was 18 years of age

So telling me to make pain my friend and and and try and sort of like, Oh, you know, it's all in your mind I That was not supportive at all. So I I had a choice, didn't I? I had a choice of either taking noxious chemicals that the doctor was giving me, which were destroying my kidney and my liver or being told that it was all in my mind. So yeah, CBD was the only way forward

And it works as well. It works as well as anything. You know, At least I can function from day to day

Now, I I'm glad you found something that works for you. I'm really interested in when you said having a flare up, What does that mean to you? To me, it means that every single part of my body is screaming in pain. It means that my feet feel as if they're either in a bucket full of ice cold water or being toasted in a fire or within 30 seconds of each other when my husband can tell me that my feet feel perfectly normal

Um, it means that I have, um, an appalling itch which moves around my body, and I scrape myself raw with it. It means that my I can't think straight. Um, and in fact, I just want to lie down in bed with a hot water bottle and not move, which, of course I know is not a good thing

But some days, it is all I feel I can do. Um, and I it it means I don't get out of bed until about 10. Half past 10 in the morning, which is, which is ridiculous

Really sleeps bit. Shit. Um, massive temperature changes in my body, which I think are not real

They're not apparent to anybody else but me. Um, and a feeling as if I've been lifting 10 tonne weights with my arms when I've done nothing. So yeah, it's pretty

It's pretty bad at the minute. It's pretty bad. I mean it

But, uh, you know, some somebody in the house is cooking my meals for me and bringing me breakfast in bed and stuff like that. So that was good. I'm so sorry

It's shit at the moment and like, you've kind of started to ask my next next question. But what impact does it have on your loved ones and what impact does it have on your family? Um, well, I have my mother, who is still alive at 91 still doesn't think I'm ill. You know, I use the word ill, but you know what I mean

She doesn't believe me. Basically, my my mother has Well, you just have to get on. Get on with it

Stop. Stop being so silly and just get on with it. Um, good for her

I'm glad she can do it, but, um, she she has always minimised my pain. I don't see my Children at all, um, for the for for different reasons. You know, um and I am so glad that Bill and I got together

We've been together for 12 years now, and that's been the first time in my adult life that I have felt supported and listened to, but I still have this niggling feeling of guilt at the back of my mind. You know, Um, that kind of I'm sure he didn't marry me, thinking that he'd be having to look after me all this time. Um, it doesn't bother him at all

Really bothers me more. I'm always apologising to him, you know, for being a burden. He doesn't think I am, but I do

I mean, yeah, it's OK. I I have very similar experiences, and it's hard. It's hard because what's in here is in here, isn't it? Yeah, yeah, yeah

So, like, a lot of people that don't live with pain avoid pain and talking about pain. And I'm just curious why you wanted to share your stories. Like, why would you want to? Why have you shared your story? I was a Kath asked me if I would, um, do this

And I am. I'm a great believer in getting as much information out there as possible. You know, in the same way that I talk about my son's schizophrenia to everybody, I don't go around

Go Oh, guess what? My son's got schizophrenia, but you know, I don't hide it. And I think I've always said that talking about it gets rid of the the stigma of it and helps people understand the big, serious mental health issues a little bit more the more it's talked about, the better. And I think the same thing goes with pain, you know, um, pain belongs to everybody

Everybody has pain. Some time in their life, everybody. Oh, and we shouldn't We shouldn't have to do the stiff upper lip thing

You know, um, there's nothing wrong with with having with saying you have pain. Um, and I think the more people that talk about it the better. And then also, I think the information needs to get out there for such health care professionals as that GP that I had to change

You know, they need to know that we're real, that we're not making it up and that we deserve to be listened to. And I think I'm one for being stand up and and and being countered, You know, I've always been that kind of a person. And that's what I'm doing here

Thank you. It's so important. And, um, yeah, I totally feel that these stories will make a difference

Yeah. Is there anything else that you wanted to share with me that you think that's important to be heard? Um, I I don't know. I think we may have covered it

Unless you've got some more things you you want to ask or discuss? You know what you think you want to ask me? Ok, um I feel I don't know. I mean, do you want to share your story with me? Yeah. Why not? Like I'm so when you were talking, are you? I was very conscious that I also live with mental health challenges

Um, I live in absolutely fear of telling people about how bad my pain is. Um, and I have spent years and years and years of talking and sharing all my mental health experiences to hide the fact that actually, I'm actually with a lot of pain. Um, I was diagnosed after being sent everywhere, basically with fibromyalgia

And, um so I first I was diagnosed with chronic fatigue syndrome. I m AM e then chronic fatigue syndrome. Then I BS

Then I finally got a diagnosis of fibromyalgia, and I didn't even I've never, never heard of it. I was, like, never heard of this thing. Um, was very blinkered in my wanting to research

And I'm quite the person likes to know what's going on, but I just couldn't cope with knowing, you know, really much about. I just suffered in in in silence, took lots of medications, you know, did had hundreds and hundreds, hundreds of appointments, missed appointments, because, you know, some days I just can't get up out of bed. And when I got my diagnosis felt I felt, Oh, God, there is something really wrong with me because people told me on my journey that Oh, it's all in your head

Um and it has affected my ability to work. It's affected my ability to have intimate relationships. It's affected my ability to do so many things

But the worst thing is, I have felt absolutely shamed about living with pain because it's not something that I think I was ever comfortable talking about. What? When I've spoken about it, I think a lot of people have said Oh or minimised it and it just makes you or it's made me just retreat. Um, so even a lot of my colleagues and friends know so much about all my other health challenges

But when it comes to the pain, it's very still, I think, a bit of an elephant in the room. And I think this project has made me think well, I wonder why that is. What is it that I'm I'm comfortable with? Why has my experience been so shit? Yeah

Um, I've had the doctor Tell me to pull up my socks. Oh, yes, I've heard clinical psychologists. Tell me, is this a mummy and daddy issue? And that was the exact words

Um, I also have a wonderful GP who has gone with me gone like beyond and above what you could imagine And, you know, tramadol, Um uh, Naproxin to name a few. But like all of these tablets been prescribed to me at one point, I was on 30 or different tablets, you know? Guess what happened. My stomach got really messed up as a result of it

Nobody told me that I should be taking a stomach line now, then got addicted to the painkillers. And then the pain was still there. Went on a pain management course after about 15 years of living with pain and at times wanting to not be here

If I'm honest at times, it's been so bad. I've been don't want to be here. What's the point of you know when the world is going so well for you in your brain But your body just doesn't play ball

It's really hard to live with. Went on this pain management course and met other people. And I was like, Wow, there are other people like me, um, and and and very nice people that share those experiences

And this consultant told me something was really, really scary. Was never let anyone operate operate on you because they were just about to operate on my spine, and, um, that would have been a misdiagnosis. So, um, there has been so much kind of either denial about my pain that's in your head

Or actually, it's this thing and we're gonna treat it the most aggressively way, and we're gonna operate on you, or we're gonna give you the much strongest painkillers, and we and and like you, you know, the pen pen in Or, you know, the dose was like to the point where I just couldn't think it was like I felt like I'd It's a chemical cost. I felt so all the things that were supposed to help never helped. And then when I started to kind of explore a different way of being that was used against me, I was told that I was being difficult

And if you want not to live in pain, well, why would you not take this medication. Yeah, Yeah. And so I've got met a guy now married to him

And he's probably the first person that's been like OK, like, you know, very cool about it, Very matter of fact and very supportive. Um, and I've had to learn to be and and this is like my expression. So I sometimes feel like a a young person in a very much older body

Mhm. And I've had to learn how to be a person living with pain and working. I've had to be a person living with pain and being in a relationship

I've had to be a person that as friendships, but sometimes can't be the best friend because I can't do the things that you might need from one for me. Um, and this project has pushed me so far out of my comfort zone because I don't talk about my pain. It's very much easier when you can get other people to talk about theirs, isn't it? It is it

And and I think I I think the the the people that I've spoken to have all had very similar experiences, which is such a shame, like, why haven't we been believed, Why haven't we been able to get that support? And why has it taken so long for people to find what works for them? And I'm not sure that I've quite found what works for me if I'm honest, Um, but I think I'm quite Gobby, and I think that I have lots of gumption. But I found it really hard. So imagine what it's like for people that so that's why I probably am sharing my story, and I I still I'm not interested in the idea or the notion that people's pain doesn't matter where pain comes from

If people have pain and that's what they're telling you, help them. It's real. Believe them

Yeah, well, I'm very I feel quite honoured, given that you feel uncomfortable talking about your pain. I feel quite honoured that you've felt able to tell me because you've only only met me very briefly. So thank you for that

I that's that's a big hoax. Thank you. Thank you

Likewise. It just feels like the right thing to do. I don't know

It's it's just one of those things that I don't know. Uh, I'm I'm not sure I feel uncomfortable I do feel uncomfortable, but I'm I'm now feeling that I need to find a way and a lot of my communications around pain has been to and I call it ostrich. So I just go into my bed under the duvet and wait for it to pass

And it feels at times, if I'm honest, that I've lost so many opportunities and moments because I just haven't had the words or the ability to vocalise how shit shit it can be. Yeah, Yeah. Do you where you live is that is Are you in the middle of the cities or towns or Yeah, I'm in London

London? Yeah. So I'm in the middle of town, Um, and I live in a two up two down, and I've, like, just stumbled on things. So things that work for me, like I have a toilet downstairs

I did, Yeah. No, but I but bedrooms up there, So, like, really simple, like things that people look at just wouldn't understand that sometimes just being able to get to the toilet when you can't walk and move, and you and you know that kind of stuff or having to, um, have two bedrooms or rather than one bedroom. Because when I'm in pain, I can't really cope with other people, be touching and being around me

So these are things that I've I've kind of just developed and learned along the way. And then I've met people that have given me lots more tips than actually systems and doctors and pain specialists is that people living with it have given me lots more support and tips. Yeah, well, this is the first time I've really been part of any kind of group

Um, you know, sharing this experience of of long term pain, Um, just sort of gone on with it on my own. Really? I think I've inherited that from my mother because she's one that does that. I can do it all on my own, but, um, it's interesting that the word fibromyalgia is is is coming out a bit more

Now there's a bit. It was unheard of in this country or not, but certainly not believed in this country. And and then if you looked it up online, everything was a was American

Um, and I have to admit, I've done most of my research with American studies because there's not. There's not the, um the stuff done in this country, but to actually just hear other people say I have fibromyalgia is it's it's a great thing you're not on your own And it it And I think that's quite important, isn't it? It really is, and and like living with pain in itself can be quite isolating. And then so being able to have access to other people with those experiences

And when we did our zoom call, I felt so validated. I came off and I was like, Shit, let's all look at these other people And there were people that weren't ashamed and there were people that are clearly doing, managing and not managing, you know, like it's a very big broad spectrum and some people that I had the same experience. Yeah, it just felt so validating

I just felt well and you were facilitating this and so therefore, you didn't mention yours at all. I I did actually in my breakup room, talk about yeah, and I have been very honest with people about that People's West media. I work there, but clearly they thought about like, you know who's the best person to work on this project

And I think having that experience has, you know, the assumption that you know, having a bit of a long term pain gives you the ability to kind of connect is is is very true. But actually, I'm on a very different journey than some people. So I have learned more than I had expected

And I have feel like, you know, this. This project, particularly for me, has been just so positive. And I've learned, and, you know, I'm supposed to be the facilitator of catching stories, not that I ever believe

It's not that we all learn it when we're in space together, but it's been so valuable for me. I know, um, having, uh, when I had breast cancer and discovering that I could have a breast body, somebody who had the lived experience and had gone through it, even though their journey was completely different to mine, it made my experience of it that less that much more, that much less frightening. And now I am a breast buddy to somebody else, and it's kind of getting this sort of interlinked us

And I think knowing that there are people out there who? That their experience will be different to yours. But there is a common thing, isn't there? There's a common thread through it all. Um, yeah, I'm I'm fascinated to see where this project goes

Um, it could be cos we're all over the country, aren't we? We are, We are. And I'm I'm not sure where it will go, but I do think it will go somewhere cos there there are things that, like everybody has within then. So although they live with pain and pain can be so debilitating everyone's got so much grit Everyone's got so much desire to do that just so yeah, it's just do you not think, Jo Isaac, that if you don't have the grit, then you just give up, don't you? And you just just might as well not be here

Yeah, yeah, but I think unlike other projects, that it is very present here that people are not gonna give up and haven't given up and wanna make a difference. And it feels an honour but a great responsibility to to each other to kind of how we make sense of these stories, how we use them in a way um, but I'm also fortunate to work with caff and people's social media that work in that way. Anyway, um, that is just an inspiration, isn't she, Really? Oh, God

So, like anyone that comes across caff in her life is very lucky. Yeah, I'm so glad I came across her. I really am

She's just a rap, sunshine. She really is. And she she's she doesn't even know it

Most of the time, I Yeah, I I she She's very humble. I think I I think that would be a good way to describe Kath is that she's very humble. Um, but just one of the nicest, nicest people

One of those, uh, a person with more integrity than than most. You know, She's Yeah, sing sing cats praises, you know? Yeah. She's certainly one of the people that I'd certainly pick up the phone to

She's on the top of the list if Oh, yes, I was having a shit day. The person. Yeah, and I'm lucky cos she's only three miles down the road, So you are

And I'm like the opposite of the side of the country, but I'm sure our paths will definitely cross in person, man. Oh, that would be nice. Yeah

I'm planning to go to a festival by s, though. And this this festival? Yes. Yeah

I don't go to knocking anymore because I can't cope with the, um it rains a lot. And it's, uh, cold, Of course, because it's Scotland. Uh, I used to I used to have a stall there reading tarot

Um, but that meant that I had to be there for five days, and I just can't do it anymore. I can't camp for five days. You know, lying down in a in A in a in a field is not something I'm capable of doing anymore

But knock and Gori is wonderful. Just make sure you come with plenty of thick boots. Yeah, definitely

But, um, when you come up, Isaac, I'll have we'll have to arrange to meet the coffee in the, uh in in the local art centre. Definitely, definitely. And, uh, and a chat is always so lovely

And thank you so much for, like, meeting with me and sharing your story. And thank you for sharing your too. I'm very honoured

Mutual mutual. And what I'm gonna do next is I'm gonna send you, um, the consent form again? Because I know you've already probably completed probably, but I'll send it just in case. I'm I'm gonna type up

What? We've the the story. So there's the kind of written version of it. I'll give you a copy of it because I always like to share copies of people's stories and I'll be in touch with what next? Um, I know we've got a sense making workshop on the 13th

So, um, so thank you. And have a lovely afternoon and you take care. Bye bye bye

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