Report transcript in: Deb's story of living with pain

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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,

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.

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.

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

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.

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.

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.

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,

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.

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.

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.

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.

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.

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.

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

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

So that's

really

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

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

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.

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.

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,

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,

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.

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.

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,

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streetreporter

Post date

20/04/2023