Hameed explains to Isaac that pain has to be understood individually, because it feels different for everyone. He also recognises that a key aspect of managing his pain is about being open with other people about what he can/cannot do.

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.

Oh, um, could you introduce yourself? Hello? My name's Hamid Khan. I'm an ex service user of mental health services. Also, I'm a heart failure patient. I had open heart surgery

There's a lot of link and connection between my mental health, my heart condition with pain and aches and fatigue and trauma. And they're all kind of connected. And I'm also care for my mom, who has physical and mental health conditions

So what role does pain play in your life? Well, I think it's very sad that I I've I've suffered from pain related to my chronic condition, my heart condition. I also connected to my mental health because I used to get a lot of anxiety and depression and constant worrying about being bullied at school and college. And I remember in those days feeling my body is always feeling very achy or but I didn't realise that it was part of worrying, and also it was connected to my continental heart defect, which was picked up a lot later in life and the trauma of it

I just put it down to the fact that I was just lazy or that I wasn't exercising enough and the more I felt tired and fatigued, the more I was trying to push myself to do things which meant that I was getting even more traumatised by it. So that's where it all started for my teenage years. And how is the pain affected your ability to live the life that you want to? I think that it's affected me in many ways

As a young person, I I was very restless because when pain was coming on, the only way I could distract myself from pain and fatigue was to do keep my do things, to make myself feel like I'm doing something. But when I got older and now I've had an open heart surgery in July 2019, and this is the difference between me and a person without heart condition. My heart works twice as hard as theirs, which means it gets very, extremely tired

I get ankle swelling, I get sometimes palpitations. I feel so with me. It's like, you know, like when you have no heart condition, you gradually build tiredness and you can see it coming and you think, Oh, I'm getting tired and I'm getting tired with the heart condition With the way it works, the tiredness just comes on rapidly

So I could say to you, Oh, let's go shopping ASDA and you'd be like, OK, I'll be done in 10 minutes but I'll get ready in 10 minutes we'll go. And within 10 minutes I could say to you, Oh, my body is absolute in pain. I can't even get up the sofa

Or I might say to you just give me two minutes and I end up coming in my room thinking I'm just lying on the bed for a few minutes and I end up falling asleep for about an hour and a half. And that's why I learned that my heart condition for many years I was basing it on. I'm lazy

I'm lazy. I don't I'm just too lazy. I can't be bothered

But actually, after I had my open heart surgery and I spoke to my surgeon and consultant and heart failure, she said, This is one of the symptoms that the tiredness just comes on like that, but also the opposite that the spirit of energy can also come on like that. So I have to be very mindful that when I get the spirit of energy not to think. Oh, he he is 20 years younger and he can conquer the world because if I do that, then after a few hours later it will be the opposite

And it'll be a constant, you know, fatigueness, tiredness and pains. And I feel like my body is like, even though it's not like that physically out but inwards. I feel like my body is like this, and I just Sometimes I just say to myself, I'm glued to the mattress and when you're a carer and you feel like you're glued to the mattress and but you have to get up to do the caring role on top of it, it's a nightmare

And you spoke to me earlier when we were we were talking just before we started this. How it's been really difficult for you to get the psychological and the understanding around your pain. The psychos sport

Tell me a bit about that. Yes, so I like I said to you, for me that I suffer from pain for since I could recall from teenagers. But I grew down to anxiety, depression, mental health, overworking over worrying

However, later on in my life when I got con, um, diagnosed with my heart condition, the early settings. I went on a pain management course, and it was a programme that you go to 10 weeks for two hours a week, and that taught me a lot about the chronic. Pain is real, and it's not that people are lazy and they make that as an excuse

The old, they're in pain. The more you deny it, the more it wakes you up. So you have to

So the biggest thing for me was to acknowledge it and accept it that I actually do get very easily fatigued, and that fatigue then causes me pain and aches. And then, on top of that, I learned that I've got to be mindful of understanding me. And I think the biggest challenge for myself has been self awareness

I'm very good at understanding my mom. I'm her carer, and I can pick up from her body language. Her her tone of voice expressions her just feel of what's going on, but with my own self, I've been neglecting my own self awareness or denying it or not accepting who I am in the sense of how my body operates and functions, and that has caused me a lot of distress over the years

But now I've learned to come to terms with understanding my body, and I've learned to accept that what I can do and can't do, Um you know, uh, sometimes I do a bit of a public and patient involvement work, and they start very early in the morning when I was younger. I push myself out at four in the morning and I'm talking about days when I was not a carer. So it was just me at the time, and I'll push myself

I'll get into the car, drive for hours and hours, go to me to drive. Now I've learned I can't do that, and I'm very honest. And I'll say, Look, I need an overnight stay because there's no way I can get started at nine in the morning because I know if I say, yeah, I'll be there

But I don't know what the morning is gonna be like. I could be in that. Like I mentioned to you, my body could just feel like this

I glued to it, and sometimes what should take me five minutes to say right? The alarm's gone off and get out of bed. And that's how it used to be, you know, young days when on my good days. But now it's like I'll be lying there for at least 90 minutes just saying to myself, I need to get up, I need to get And it's horrible because you've broken up your sleep with the intention You gonna be jumping out of bed at six AM in the morning? But the reality is you're not you out of bed at half seven or eight o'clock and then that has a knock on effect because you don't have the quality of sleep

So it's better to be honest with yourself and say, Look, I know possibilities. I'm not gonna be able to get out of bed at six because of my conditions. I'm gonna get out of bed around Eightish, so I'll have a good quality of sleep and set my alarm for eight

So now I've learned to be more honest with people and say, Look, you know, I can't do this or I can do this because as I'm getting older, I've learned I need to understand me more so that I can be more best as what I can be as best because sometimes when you don't understand yourself and your pain and your chronic and your fatigue and all the rest of it, you let a lot of people down around you because you get excited and you say yes to things. And on the time you can't do it because the body is not working with you. My mind is amazing

My mind is like an 18 year old, but the body is not. And I think if I had a body test, they probably tell me me you're 45 but your body is like a 65 year old because like I said, my heart is working twice as hard. Tell me about like you said that you often haven't been believed around the pain, and you really struggled to find the right services and support

So, like, what does that feel like? It's horrible because first of all, one needs to understand what pain is and aches are. Two is that it's a lot easier to go to the doctor and say something like, I've got high, you know, if you put the machine and goes, Oh, you've got high blood pressure, Let's give you tablets or your sugar levels are high You need to do this or cholesterol. But when you've got pains and aches and fatigue, particularly that causes pain and aches, it's very hard to describe it to the doctor

I didn't even realise that these sort of things exist out there until I met one lady in a conference, though I've got fibromyalgia and I thought it was some kind of a cancer because that's how naive I was. And that's how ignorant and not knowing and not having. So I said, What's that? And she said, Basically, my body get I said, Is there such things as, like, name like that? Because I said all the symptoms you mentioned, I go through them

But in my young days, I put down to anxiety and depression and worrying constant worrying about being bullied and all the rest. I thought I'm being exhausted because I'm putting too much pressure on my mind. But I say my later on in life, when I got diagnosed with my heart condition, I just put it down to the fact that I've got

I I didn't realise it's actually same condition conditions that exist that don't have anything to do with hearts and livers and organs. And so they just, you know, because she had no diabetes, no blood pressure, no heart. She just had fibromyalgia

And I wasn't even aware that there's such thing as fibromyalgia, which is about extreme tiredness and fatigue and pain. How has it impacted your life, knowing that although you have a heart condition, you also have extreme pain and fatigue? Has has that given you some like Is it helped at all? I I think what's helped is knowing there's more information now remember, I grew up at a time when there was no Internet in my teenage years I'm talking about so you could only learn about things if you actually found a book on it or somebody told you at school. And it's very rare that health talks were done in schools, and then you're not gonna go and find books on fatigue and tired and chronic pain and all the rest of it

And, uh, even when the Internet had been booming in the early two thousands, I really didn't become Internet I addict till I was in about 2010 because, you know, the young people had it from school. But I was more like, Oh, you know, it wasn't really something. It's just like someone who can't drive, you know, would not take interest in cars, probably because it doesn't like that

So even though there was Internet around me, I wasn't really like going on Google and things and searching stuff apart from using it for emails, I think. And then my first time I did something which was different to just doing emails was booking a flight so you could book a flight on the Internet. And I thought, Oh, and that's that's how that's how slow and backward I was when it came to social media and Internet

But nowadays I think I'm very fortunate. I've got to understand all these platforms, and now you can just google things and you could say, Why am I feeling tired all the time? Why is my heart palpitating? Why am I getting swollen ankles? Why do I feel like I can't get out of bed in the morning and you've got so many different stuff that, you know, to inform me about what's going on. So I think definitely information helps

I think being able to articulate what's happening in a medical language also helps. So when I went to the doctor, I said, Look, I know I've got the heart condition. I've been told that I'm gonna feel a lot tired and this is gonna happen

That And if I don't take medication on time, a few days that I would feel groggy. And I feel groggy, man, I'm gonna come down with the flu or chest. But actually what? The nurse man was groggy

You're gonna feel like, Oh, I haven't got the energy to anything. You're just gonna feel like all the time, Like even like making a cup of tea is gonna be such a big effort for you, because the the medication helps to take some of the pressure of the heart, which means that your not body's not feeling as tired. So when I went to see the doctor, I said, Look, basically, I got very similar symptoms to somebody who would have fibromyalgia and because he knew what fibromyalgia was in it, a medical language

He was able to put put things in context for me, and I was able to. So I was able to put things for him in context. And then he understood you know, where we were going

And he said, I think one of the things best for you is we increase your heart medication. Uh, the the the dose of it because it it means that your body is your probably heart is taking on a lot of pressure, and maybe that would help to release. So, you know, medical language definitely helps

And you also said to me that you've you had a sense that the diagnosis of fibromyalgia wasn't something that was get, uh uh. People from minority communities were less likely to get that diagnosis. And you talked about, like, racism and all that kind of stuff

Do you want to share a bit about that? Well, I think there is racism because first of all is, you know, no, I wouldn't say there's direct racism, but there's a lot of indirect racism where assumptions about you are made, uh, where stereotypes are made. So one of the doctors said to me, Oh, but you know your cultural diet can also make you feel very lazy because it's very fattening and very starchy and very this and very that. And I said and I I have to say to the doctor, Hang on a second, let's just take a couple of words back And I said in the morning a Western person may have fried eggs and a few pieces of bread

I might have a butter patty and a fried or a boiled egg, but the butter patty is still flour that you have in bread and the they put margarine or butter on the toast, and I just have it on the But how is my diet so different? And then I said, Well, you just said to me Let's think about I said the evening meal. Somebody has a steak and kidney pin. It's full of pastry on top and meat at the bottom

I have chicken curry with the again. It's still carbos and proteins and you know, So I said, it's not the diet, and it's not that I said, and they said, Oh, it could be the lifestyle And I said, What do you mean? And he said, Oh, maybe I said, You make an assumption here. I said at that time I had I was going to the mosque more often because there's a clear close by to my house and I said, Well, somebody might be going for a brisk walk three times a week, but I'm going to the mosque every day and it takes me 20 minutes to walk again 20 minutes back

So there you go. That's my brisk walk. But I've just said to you, Oh, I'm going to the mosque

I've told you how I'm getting there and you just make an assumption that maybe I'm living a very sedentary lifestyle and I'm not. So that was something that was good to share. So I think there is racism and we can't deny that

And I think sometimes it's racing because there's lack of cultural understanding, lack of cultural sensitivity. Sometimes the GP surgery is based in a multicultural inner-city area. In the heart of it, you sign up for doctor blog and you think he's my family doctor

But now you know a lot of locums work in the GP because every time you go, it's a new locum or it's a different locum and sometimes has come from a rural village, travelled an hour in because he's just doing a locum shifts, and he has no idea of cultural diversity and stuff like that or has not worked for very long with multicultural communities, or particularly with yourselves as an individual patient. And then that plays a part in the racism. And you said like something that really struck me when we were having our like, kind of getting to know you session that the way that they would describe pain like they just assumed that you could take more pain like you, you felt that they didn't offer you painkillers and all that

Well, the only time I was offered painkillers Tramadol and I really hate Tramadol. It's a horrible pain, Um, management pill, and it's very strong, and it has to be administered by a medical practitioner, like a GP or a heart surgeon or a consultant. And even then it needs to be signed off like it's something you just can't get off because you get a lot of people that abuse it

And I was offered that, and I wasn't happy about it because I knew that it's addictive. It's got side effects. My pain is pain, and I'm sometimes it's not very nice, but it's not extremely, extremely, extremely intolerable

But my fatigueness is intolerable because it's very frustrating and very angry. When you have an ambition, you have a heart and mind. You want to start the day off at seven in the morning and your body starts coming out of bed at half nine quarter to 10

And on top of that, you've got your car response with you're a carer like I am and all the rest of it so and then you know you're pushing yourself and you're forcing yourself and you're pushing yourself and you're forcing yourself. And then, you know, sometimes you woke up in the middle of the night and you have to push yourself to go. And so this is the person you know the rest of it

But what the way I look at it is that there was nothing like disgusting like, let's think about pain management and alternative matter. Can paracetamol work would, uh, well, can Aladdin work? Can a lower dosage of Tramadol work? Can we try something which is more natural rather than chemical based? No No, it was just like trama dog. There you go

And you said like it took you ages to get offered pain medication and then you're offered the highest dose. And like what? I was also mindful that you said that that your pain is severe and you, but you choose to live with the pain and having a clear head rather than being on the medication and not having the clear heads that really struck. Yes, because, you know, remember some of these medications

They have very bad side effects. I was on Spiral lact time, which is a thin blood thinner, and I'm supposed to still be on it. But I'm not taking which is really bad

And I've told the doctor kind of indirectly and directly and in a roundabout way that I'm not taking it, because when I was taking that, it was making me extremely hungry and I was eating wrong foods. It was making me get more anxious and paranoid about things. It was making me feel a bit forgetful, and I thought, I can't take this man and I thought, Oh, it's just me old age, you know, I'm getting in my forties now

Oh, it must be this. It must be that. But actually, I realised because by default I missed that medication for a week because I run out

And by the time I got my prescription, about a week in relapse in there. And during that time I was I stopped getting I I started getting less and less of those symptoms. And then I realised Spiral Latin has some of these side effects, and I refused to take it

I thought I'd rather have thick blood than have all these daily struggle because of the medication. What are the key messages you would like to tell people or doctors or anybody about people living with long term pain? First thing, I would say that pain is real and pain isn't the way you assume it is, or pain is not defined in one definition, pain isn't Pain isn't always a, um, pain isn't always, um yeah, pain isn't always, um, so you can see that movement getting lost for words. Because sometimes I get so frustrated where people assume they know what pain is

And they try to think that everyone has the same pain and don't so pain can be sweet pain. It can be very bitter pain. It can be very frustrating pain

It can be very, uh, sharp, like needle pain, like someone's poking needles in you. It could be like someone's throwing stones at you. My pain tends to be a very sweet pain where it's fatigued and it's just like somebody's poking at you, you know, like digging their fingers into you and poking you and poking you

And it's that kind of thing, like it's tolerable. But it's very frustrating because your mind cannot concentrate on other things. Or it goes to the extreme where it's like somebody is kind of digging like heavy bricks onto my legs and like punching heavy bricks on my legs, and that's when it's like the extreme end of it

So I always say to people that you know, pain isn't one definition of it. Pain isn't just like like just because Isaac says, I've got a pain, I've got a pain in my legs and I say, I've got pain in my legs And Miss blog says she's got pain. We all haven't got the same pain

Actually, we all might be saying the word pain But actually, if we had to describe it, we probably all have very different pain. So pain needs to be understood from an individual perspective. Have you got anything else you wanted to share before we come to an end? I think what I would like to share is that we know that people are living with longer term conditions

We know people are living longer. We know we are a very multicultural society. We know individuals are complex

A lot of com factors play into our health and well being. Environmental, economical, social, physical, uh, even spiritual. You know, part of my, uh, Muslim faith, I I should pray five times a day with a certain, um, a rich, like certain movements that you do as part of the prayer

But actually, that also has a slight positive effects on it. Because your joints are moving, you're going up and down and stuff like that. But imagine if you're in extreme pain and you need to pray and you can't pray, and then your body feels even more bad, because psychologically you feel like you let yourself down

But physically you're not going to move those. So I think people need to understand that pain does have some connection with people's lifestyles and culture and faith and and also mental health and belief. Because sometimes your belief can pull you through things

I remember one person said to me, they get a lot of, um, sooth when they go to the church, and they just And then I realised it's because psychologically they're switching away from all their everything as they're going in and saying I'm here to worship. Actually, what they do is having a a complete break from all their problems. And it's like so I realise when I'm praying, it's almost like I'm switching off from everything that's going on, which means that even the pain is kind of being managed, because I'm diverting my attention in something else

So I think people, we need to understand that pain, individuality and individuality means taking into account people's different, uh, characteristics, protected characteristics and lifestyle and pain. There is a strong connection. Thanks, mate

Um, do you want me to stop recording there? Yeah. Thank you.

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