Debs talks to Isaac about the continual pain she has caused by fibromyalgia. Debs feels that other people don’t realise how much pain she has and how much she struggles because she doesn’t have anything visible like a wheelchair.

CAPE and People’s Voice Media are working together on an important new project. 

The CAPE team is investigating whether exposure to adverse childhood experiences contributes to higher levels of chronic pain in the most deprived communities and the consequences of this. The interaction between the CAPE project, People’s Voice Media and the Community Reporter network will explore how lived experience stories can be used with the research.

aside. So can I get you to introduce yourself, please? Hi. I'm Deb Smith. I'm involved in the Cape Project

Um, Debs. What? Uh, so tell me a bit about your life. Um, what are you passionate about? What you like doing? I'm passionate about spending time with friends and their Children

That's what I like doing. Where? Where? Where were you? Based in the country, Debs. I live in the West, in South Yorkshire

So, um, we talked to. So I was wondering what, uh what role does pain play in your life? Well, quite a major part because I'm in pain most of the time, so it affects what I can and can't do. It affects my mobility, and it prevents me from doing things that I would like to do

How do you manage to do the things that you want to do? Uh, well, I have to adapt them. I suppose so. I can't do everything I'd want to do because I just can't do it because of the level of the pain

So what I can do is, for example, it was a long way to walk around going with my close friend. We've got a wheelchair that I bought. I mean, it's not ideal, but it's one way to adapt to the problem

If I'm travelling by train, I use assistance, air book assistance, travel assistance. So things like that, I suppose, and knowing that I can't walk long distances. So asking people to lift when I eat that and having shopping delivered I, for example, So can I ask you, How long have you been living with your condition? And about 14 or 15 years? I can't remember exactly when it started because it didn't start with the level of pain that I'm in now

It started with pain spasms for 13, 14 years, at least. And did you? And have you found it easy to get support, to manage your pain or to even understand? No, no, it's not been easy. I mean, it took a long time to get a diagnosis, for example, because I mean it's fibromyalgia, but they don't give diagnosis very easily

I was sent off to a rheumatoid arthritis consultant who did some kind of blood test that was involving DNA, and I heard nothing back, and it was only a year later when I was admitted to the hospital because I had chest pains that turned out to be due to a dormant chest infection. But he happened to be When I submitted to the ward, he happened to be the consultant on call and came to the ward with some of his students and happened to mention that the chest pains got bitchy with the fibromyalgia. But my GP hadn't bothered to tell me that that was clear

The diagnosis that he must have written back to her with and and I was eventually sent to the pain clinic. But that wasn't very helpful either. So they did two rounds of injections, and then the doctor kind of blamed my me for the pain, and then eventually I was discharged

That sounds absolutely shocking. And so I don't know. Yeah, Um, So can I ask you? So you were given this diagnosis? What did that really practically mean? Um, and then you you know, how have you managed to get to this point with this diagnosis and all this pain? And how have you navigated a life of pain? Well, I suppose having a diagnosis in some ways, maybe it may be easier for people around me to understand because I had

I had a friend who had had my recovered. She had some kind of lightning therapy that she she recovered from hers. But I suppose it also I also knew somebody at the time who was involved in an arthritis support group that she persuaded me to go to, and one of the other members has five miles, and she gave me a huge spy of information or le me a huge spir of information to look at

So that helped. Two. I guess I understand what little the doctors did and probably still do know about the five miles of the fact that it often does happen to people in their late thirties or I had been after having been abused in their childhood, and nobody really understands why it remembers paid, and nobody quite understands why

So I mean, all of that helped it a bit to have some understanding. I guess I just had to they what I could do and eventually the do the GP that I was under at the time described, and if she prescribed it or the or she was recommended to prescribe, I can't remember which now, But she um So they released morphine about helped, and I guess from then I mean, eventually, when I was having a lot of mobility problems, I moved to another practise. That probably isn't as good, but it is a lot more

It's just around the corner from where I live, So it's easy to get to that a car. So I guess it's just managing things like that. And I guess, using the things that are available, such as online shopping and things like that

So I don't have to carry heavy bags. Yeah, they're in everywhere. So I've got a friend who talks a lot about the fact that she uses different shops for ethical shopping, which is fine, but she hasn't got that availability because you can't then you can't

And other than friends, have you got lots of support at home? And if you not really no. So it's just I'm just under the G, the care of the GP and the practise that I that isn't that helpful, I mean, but I'm moved there. They called me in for an education review and then reduced some of the medication I was on and the doctor there said that the fibromyalgia I'd notice wasn't in my notes, wasn't where she expected it to be anywhere

That's what she said. So it's not always easy if they, I mean, you don't get to see your notes. So you don't know where things have been put Where they, you know, you only hear what you've been told

Hm. And I I assume And please do correct me. Reducing medication for someone with a chronic pain condition means that they can do less and are able to manage

Yeah, yes. I mean, it wasn't too bad. I mean, I adapted to it

I mean, there's evidence to say that long term use of opioids isn't that helpful anyway, that that it becomes less effective. So it's difficult to know what anyone thinks the right treatment should be because I don't think they know yet, right. So you also said, um, just a moment ago, the kind of links with early childhood experiences, Um, and I was wondering if you've ever received any support for that or Yeah, yeah, yeah, and I had to have it

There is counselling treatments, but eventually dialect to behavioural therapy. So that will help. I suppose the realisation as you get older, the some a bit doesn't always go away that easily

Some of it you have to live with the fact that things have happened and it can't just be make better or just doesn't just doesn't just doesn't disappear completely. Yeah, thank you for bringing that to this space. I think that's a really, really important point

And when you were getting the help around the psychological and the trauma help did, was it connected to also kind of the physical help that you were getting around the pain management? No, it's because I've had a lot of mental health issues and post traumatic stress disorder. So no, it wasn't connected to at all. So I mean, and it was also the last that I had was in the early years of me having the pain

I mean, it wasn't the mental health services weren't that helpful about the pain at all. So even though I had to care, coordinate her, she said that the pain was nothing to do with my mental health. So the fact that where I was having really bad pain relapses, that it was affecting my mental health

She didn't accept there was any connection. So she expected me to sort out that on my own man. Physical health complaints completely separate for mental health

And I mean, it's quite unfortunately, it still can be still quite common that mental and physical health are seen separately. People with cancer diagnosis who can't get mental health support. So unfortunately, I mean, we're all one person

So everything interacts with everything you know. We should be. We should be seen holistically

Absolutely. And it just sounds really like hearing you say it sounds like, Well, how do people not understand that people are whole people? And you know, if you're in pain, of course it affects your mental health. It's just, um, brings it really home in and very present in these spaces

So I do you what would be useful for people so like, if we were gonna create, like, the perfect experience, you know, what would be useful for people on their journeys of living with chronic long term pain? I think something that's helpful is the opportunity for people to talk together. So I think in some ways I think the others would say this as well. The patient and public involvement group has kind of provide you that to some extent a space where people have been able to share online but were able to share their experiences and find that there are others with common experiences

I mean, not necessarily. The pain is for the has the same diagnosis, but there's a lot of similarities and a lot of frustration for people living with. And there does seem to be a common thread of some kind of trauma and things like that that I don't know whether they exist or not

I've been told that I tried to find support. I there didn't seem to be anything that I could find you with five. I mean, I was told not that long ago that there is

I have not I So that's really um so, yeah, it's really sad. And like I've heard from other people, um, this the same kind of experiences. So I'm wondering about what can be done differently

So what needs to happen differently, particularly on health and social care, for people to manage, find out about what's they might find useful. My face to begin with, it's the professionals themselves having more training so that they're able to tell people when they get in touch with them. Yeah, is available, but also, I guess, people knowing where to access stories about people like themselves

So just be able to read about someone who might have a similar experience, have had a similar experience to yourself or having to make it feel more normal. And I think, to be able to find understanding, because I think it's very difficult for people who aren't in pain to understand. That is, it doesn't go away

So it's not like a cold or a flu or even most cases of covid. I suppose that you can go, you can have and then you're better. It's not like that

And I think that's what a lot of people like Is that understanding? Hm? And it's very difficult. Know how you answer somebody when they ask you how you are. Either you tell them that you're always in pain or you say it's up and down, or just it's difficult to know what you say because you don't want to be always seen as though you're talking about it

Um, if it's always there. Not any different to the last time they asked you so. But people don't seem to understand that

So this continual thing, uh, so what would you How would you want people to inquire? Like what? What kind of things would you want people to say? Which is for people to understand that it is continual, Hm. True to have that context so that they understand that it doesn't go away and that you're always struggling with age in one way or another and that you're limited in what you can do And yeah, for the general population to understand that pain is silent so they can't necessarily see it. And if someone's not in a wheelchair or using a walking stick at that particular moment in time, it doesn't mean that they're still not struggling, right? But people don't understand that

So if you try and use the table a priority seat on a train or a bus most of the time and somebody else is there, you get told that you're not disabled and use them. So is that kind of lack of understanding that there is just because somebody can't see and illness or a disability it doesn't mean it's not there. Absolutely

What are your hopes? That, uh, what what's your hopes for as a project? So what are you hoping as a result of cake and its work will happen? Well, A and the project associated with it to try and find out some more about why pain happens. So why the nerves are telling your brain that you're in pain when there isn't actually anything causing that pain in the present? I mean, that was how a friend of mine who's a physiotherapist explained it to me. Hm

But and for a long time, there hasn't been much research going on about pain, really cheap and other projects the first that have really looked into much to do with pain, to try and get to the bottom of it until they can work out why. The problem is, and I don't think it's very difficult for him to come up with ways of managing his apartment painkillers. And obviously most painkillers can stop being effective, and even if they are effective, have side effects

Yeah, and yes, it'd be good if there was some way of making a lot more people aware of these issues, so there's more understanding generally. Hm. I suppose maybe it's got to part of the journey that other diseases have followed

Where cancer wasn't talked about 30 or 40 years ago as much. There wasn't the awareness of the fact that if you can have cancer and not necessarily die, for example, well, it seems that everything has to go through a long process before it becomes accepted. Or people know about things

Yeah, and is there anything else you wanted to share with me about your experiences of being involved with Cape or living with paint? Yeah, yeah, I mean, I think he's been past his chair, so I think the P p I group think people find it's a safe place. I suppose it's not always easy for the meetings to be scheduled where everyone can go every month. And I mean, a lot of Cape is based in Scotland, so it would be going to be difficult for people to meet her very often, if then, if at all

Hopefully there will be opportunities for people to meet up, and I think there's a meeting. What's the year that they have? Yeah, I think you said it was in April. I mean, it would be helpful if people were able to go to that

Yeah, I guess it's just making steady progress. Yeah. Have you got any questions for me? Uh, well, I guess the next step after this is on the sixth of December, isn't it? Yeah

So on the sixth, we will look at a few people's stories. Um, so so far I've managed to capture and three and Cape members and one non cake member. Um, and we will look at the stories and look at what are key message and themes coming out from these stories, And how could we use these stories to help with? I think the thing that you talked about is to ensure that people have more awareness of the challenges of living with chronic long term pain and how we can use those in an educational way

How we can, you know, get people talking about it and understanding it. Um, and then after that, we will decide what our next steps are. So we're taking a very stepped approach

Hopefully, um, more of your colleagues will want to share their stories. Um but we hope you can join us on the sixth. Um, yeah, I hope to

I think it may be that it's a bit later in December that because I think Gillian was trying to see what people wanted to do in terms of people meeting up after they've done the stories. And I think she was talking about a date of the 16th of December and whether some people when she's done, because I know she's not going on a holiday. I don't know whether it's a week, but she's away

But whether some people want to wait until nearer 16, OK, in case anything is stirred up, I don't know. I mean, there was other support that so the I think the chair of the group was going to be available for people to talk to. Yeah, it may just be that it takes a while for people to get in touch with you

Yeah, and our approach is, if we get to the six and we haven't got people there, we'll just rebook and we'll make it work for the the members. And, um, I suppose because I also live with chronic long term pain, Um, for me, you know like sometimes I'm in groups where no one comes because everybody on that day is having a flare up and then other days that one or two people on other days that everybody comes. So we're conscious of that

And, um, we like personally, it's a really important project for me and for our organisation, and it's honestly the first time I've been in spaces where I've talked to people openly about it. So I think it's something very special, and we want to make sure that it's used in that that that way. Um, because I think it can make a big difference

Um, so what I'll do is if you're OK, I'll stop the recording there, um.

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