Report transcript in: Carolyn's story of living with pain.

Please Report the Errrors?

off the screen.

OK,

so, um, I just got married this year, actually, Just got back from my honeymoon, too.

That was nice.

That helped with the pain.

Um,

so I

I live in North Lanarkshire with my husband and my

really hyperactive cat,

And, uh, I've been

I've been living with pain all of my adult life, but it wasn't until I was around 30

that I realised other people didn't have what I had.

And then it turned out that I had fibromyalgia, but there wasn't a name for it

back then, and I didn't realise people had that. And then in 2015,

I started suffering from chronic back pain,

and,

uh, I had to

struggle to be heard. Um,

that it wasn't fibromyalgia.

And now this year, just recently in the last couple of months,

I now have problems with chronic pain in my knees as well.

So I got my knees, my back and my fibromyalgia

all kind of going on at the same time.

So yeah, so some days are really tough.

Sounds really difficult, but thank you for sharing.

I just wanted to explore. So what role does pain play in your life?

What role does it play? It mostly gets in the way

it gets in the way of everything

it gets in the way.

The only thing it doesn't get in the way of really is my relationship with my partner,

Um, my husband, actually. Now,

um,

he's he Recently, he's always been very supportive and tried to understand.

And I think it's difficult for people to understand what living with pain is like,

unless that's happened to you.

And then this year he had a run in with gallstones, and it was so awful

that he ended up going private to get his gall bladder out

because he couldn't imagine living with that pain for two years,

um, to get surgery.

And he did say to me,

It's given him a newfound respect for me and other

people who live with pain on a daily basis.

So,

um, in terms of socially, um,

I do kind of just have to plan everything ahead.

Um, and I need to take a lot of rest day. I need to take rest days in between

days that I go out, I can't, for example, easily just wander around the supermarket,

things like that I just

I know it sounds really silly, but

I do enjoy things like that, but I can't manage it.

So it's really it's really frustrating. So I see pain

as something that gets in the way, and

I, er, I'm not working at the moment,

uh, as a result of that.

that's frustrating as well.

Because unfortunately for me, um, I I can't take any pain relief because it just

for I don't know why.

The doctors don't know why. It just doesn't work, just does nothing. So I just have to

going on with it.

And

that in itself comes with issues that people don't believe.

You, I mean, are not taking any medication. Well, it can't be that bad, then

that's the general consensus. So it's often it can be a bit of a battle.

Sounds really difficult.

Um,

so what

could, like, say,

what could be done differently? So what would make a difference?

Uh, I

think less gas lighting from medical professionals telling me that

it's just it's just osteoarthritis.

Nobody from Osteoarth nobody with osteoarthritis ever ended up in a wheelchair.

That was something I got told

when I was at my absolute worst with it, and I couldn't walk,

and I was completely housebound.

Um,

I feel that a lot of medical

professionals try and invalidate your experience with pain

by telling you,

uh well, I think a lot of there's a lot of assumption

and this might be because of areas that I've lived, I'm not sure,

but there's quite often an assumption that you're

only at the appointment to get strong painkillers,

as if

we want to be taking those kind of painkillers. Um,

I've been all the way to the top of the analgesic ladder.

When I moved to my, um, current

location in Scotland,

I I was I was wearing fentanyl patches for my pain,

and they did nothing. I mean, fentanyl did nothing.

And the doctors just they don't believe that it doesn't work.

So then they don't believe that you're in the pain that you're in,

and

you just

nobody listens.

Nobody listens. I just want to be heard.

I want my,

um, GP practise or the I mean,

the I haven't heard a thing from pain

management since 2018 because I was getting injections

and I said to them they're not working,

they just The amount of pain relief I get from

the injections isn't worth the amount of pain I'm in

getting the injections. That's way more

so. I feel completely abandoned by health care,

and I think that's something that they need to work on.

I think they need to be checking in on people that live with pain.

How has it changed? What can we do? And maybe there's a whatever the latest,

um, research shows. Maybe there, you know, clinical trials, things like that.

You just don't hear anything like that.

And that's actually one of the reasons I got involved in Um

and, um, public patient and public involvement

was this way.

My voice gets heard and it leads to positive change, so that might not benefit me.

But it will benefit other people, and I just don't think it's

I don't think it's fair all the hoops that you have to jump through to get to,

even just to get a diagnosis.

You know, if you what I I got told my back pain was fibromyalgia,

and they absolutely would not accept

that.

I've been living with fibromyalgia for I don't know,

say 25 years or something at that point, so I know what that feels like.

This is different. This is completely different.

And eventually I was able to see a different

doctor in the practise who actually said Right,

OK, just tell me what you want me to do.

I want you to refer me somewhere and I need I need this checked out

And she did

and I did get referred somewhere and I

and just having that scan and being told, Yes,

you've got osteoarthritis in this spot in

your spine and that's what's causing that pain

just made me feel validated.

It didn't change anything in terms of the treatment that I got,

but it made me feel validated.

Um,

but since then

it's just

there's no support,

just I feel quite emotional. Actually,

there's no support for people that live with pain.

In fact,

through this project, I've spoken to other people that are living with pain,

and

I realise now that this is the same experience that other people have as well.

It's not just me,

in one respect that makes me feel better.

It's not personal because it's quite hard not to take it personally,

but on the other hand, it makes me really sad and really angry that

that something isn't being done.

Especially with so many people in the UK living with chronic pain.

You would think that, you know, it's not We're not a minority.

I think that has surprised me How many people there are,

Um, And the common experiences. What impact does it have on you

not being believed?

Like you said that, You know, you believed around your your pain.

What impact does that have on you?

Yes,

it really affects my confidence.

And it makes me assume that everybody else that

I come into contact with won't believe me either.

Um,

sorry. I'm feeling really emotional with this.

I didn't expect this to happen. Um

so take, for instance, the idea of getting back into work.

So when I've had some lulls in my pain,

I have considered I would really like to get back into work.

But when I think about how I was treated by my previous

employer and the fact that even health professionals are not interested,

the gas like you and what not.

I just don't feel

like I can deal with the anxiety and stress of trying

to find a job having to justify why I would need,

um you know what they call these days Reasonable adjustments and things like that.

Um,

so yeah. Sorry. Can you just repeat the question again?

Sorry, I went off the tangent. I forgot.

Yeah. And I would like to come back to this point as well.

So not being believed what impact are having?

Well,

yeah, So

I think. And,

yeah,

there's other other people in my life past

and present who have an experience with pain.

And then you get this attitude of people that will say, Oh, I just get on with it,

you know? And so

I don't Obviously, you can't know what amount of pain a person is living with,

But then when they have that attitude Oh, well, I just get on with it

then you think, Oh, well, obviously that's what they think I should do.

And so there's no empathy.

There's There's just

unless

there's a lot of empathy within the support group, absolutely there is.

And that's one of the the things it's kind of always commented on,

and every one of our not I'm calling it a support group It's not even a support group.

It's our research projects, but that's what it feels like. In a way.

It feels like a support group. So there's a lot of empathy there.

Um,

and I do get empathy from my partner, especially now

that he's had his own brush with really severe pain. So,

um, but in the wider community and even while I was working

So when it starts to affect your work, you're having time off and things like that.

People are not sympathetic,

they're not. They just see it as they're off again.

Now I'm having to carry their workload. You just don't get you. Just don't get that.

It has been seven years since I last worked,

so there may have been changes in policies and things like that.

Generally, I'm not sure I've not been following that, but

I have a lot of fear around,

um, official things, anything official, Um, like, for instance, in lockdown,

right at the start of lockdown, I got called for jury duty,

and I all I could think about was one.

It was a 2.5 hour travel by public transport

to get to where they were holding the cases

and I would have to sit all day

and I thought, I can't do that, Not with my back pain.

I would need to be getting up and walking about

And I was terrified that they wouldn't believe me and that

they would make me go and do my jury service,

and I wanted to do it.

And that's the That's the travesty.

You know, there's so many things that I just feel like I would want to do, but I I can't.

So, yeah, there's a lot of fear

for not being believed

such a shame. Such a

terrible experience.

Can I ask you?

Um,

is there a lot of stigma?

Uh,

with living with a pain condition?

Um, there can be I'm lucky in that. My husband, like there's no

my husband's very supportive. He has a disability and maybe nothing to do with pain.

He doesn't suffer pain as a result of his disability,

but I think because he lives with that and has lived with it all of his life,

he has a completely different attitude towards,

um, you know, kind of life limiting conditions.

Um,

but within my

when I when I just think back over time.

Kind of like my teenage years and and kind of over that.

Yeah, there. There's definitely a stigma that it's definitely

that British,

um, attitude of Just shut up and get on with it And stop moaning.

That's it. Take your painkillers. If you're If you're not happy, go to the doctor.

You know, as if the doctors could cure everything, which obviously they can't.

They would like to,

but they can't. And what works for one person doesn't necessarily work for another.

And that,

uh, one of the things that

have you tried yoga? Have you tried going vegan? Have you tried this?

And, you know, this was mostly when I was in a work environment.

So working with people that didn't live with chronic pain

and

you just

you feel like you're banging your head off a brick wall. And because you say

but going dairy free is not going to help my osteoarthritis or my fibromyalgia.

They take the attitude of like, well, you know,

they don't They don't try these things.

So they just don't You don't get this. You don't get the empathy.

Yeah, absolutely.

You said early on, when we were discussing sort of your journey,

that

you had a point in your life that you realised that you were living with pain,

but everybody else wasn't.

Would you talk to me about that? And also, what has your journey been with pain,

Right.

Well, I remember, um,

I relocated to England for a while and I remember going

to the doctor and just one day just randomly saying,

See, when I touch my muscles, they hurt. Is that supposed to happen?

She was like, No,

that doesn't happen.

And then since then, I kind of asked people, you know,

partners I've had in my husband like,

I'll touch them lightly on a on a place and I'll go.

Does that hurt you?

And it'll just be quite a light pressure And then, like, No,

it doesn't hurt me and I'll press a little bit harder.

Does it hurt? You know?

No.

And I think

Wow, right? So,

yeah, I I so that I had been living with kind of background pain,

and I've come to realise through this study that we're part of that,

that background pain that that I call it it's not so background now, But back then

it was probably triggered by things that happened, uh, during my childhood,

you know, trauma, trauma, basically.

And, uh,

that's been quite

an eye opener for me. And it kind of explains things because I I

kind of lived.

I've lived my life thinking, Why do I

do I have this? And when you look it up and it and it says that

you know,

quite often fibromyalgia can be triggered by a

traumatic event such as maybe like an accident.

Or,

you know,

just and I've always kind of thought that it's something in

the in the present and I never realised that actually,

it can be triggered by something in the past.

Um,

so I just kind of got on with it having fibromyalgia.

I didn't realise all the side effects. Well, not side effects. Sorry

that it

It's It's like a syndrome.

And there's lots of things that are part of fibromyalgia and pain is just one.

So it's not really until more recent years that I realised that, um,

like depression and insomnia and,

um, just all sorts of things

are part of living with fibromyalgia,

and these are things that I have had trouble with all of my life.

Um,

but nobody's ever

sorry.

Not that nobody.

There's a lot of doctors.

I don't know so much now because, like I say,

doctors don't talk to me about my fibromyalgia.

But

there was a lot of doctors don't believe fibromyalgia was real.

Um, so it's quite hard to find a specialist.

I don't think I've come into contact with one yet, actually.

And I've been living with fibromyalgia for

over Well, 35 years I've been living with fibromyalgia,

and I've never come into contact with someone who is like, Yes,

this is part of fibromyalgia. This is what we know. This is what's happening.

This is what the latest research is.

and

sorry, I've forgotten exactly what the

question.

It's

that moment when

it just sounded

weird.

But you realise that you've been living with it? Yeah,

And

when you

I think when I were told people I don't know,

because at the time it wasn't really talked about.

Nobody really knew about it. In fact, the doctor who told me that I I probably had it

actually said to me, and this was about the This was the late nineties 98 99.

She actually said to me the Internet was new

and she said,

Go to this website and it'll have a diagram and it'll show you where these trigger

these little marks these trigger points And if you've got more than 11 of those,

then you have fibromyalgia.

And that was it.

There was No,

this is what you do next. This is how we treat it. This is what it is.

This is why you've got it. There was none of that,

and there never has been.

And it wasn't until about 13 or 14 years later

that I approached a GP and said,

This is what happened in the nineties.

But it's not on my medical record that I

have this condition because I've never been officially diagnosed.

And that's when I find out Well,

there's no obviously, there's no test for fibromyalgia.

It's just a diagnosis of exclusion.

So we excluded all the other things, like MS and what not and and, yeah,

you've probably got fibromyalgia

and, er

it did make me feel

like I'm not going mad.

There is a reason

that my body hurts all over

that have fibromyalgia,

but but now,

uh,

like every other person I come into contact with has fibromyalgia,

and it's frustrating that there's just still so little

knowledge and support amongst, you know, in primary care.

There's just I don't know, I I I'm not sure what it is.

I I am a few before, before the pandemic, I approached my GP and said,

Look, I was reading one of the the newsletters from from fibromyalgia UK.

And there'd been a clinical trial that some people had

been put on metformin and it had helped their pain.

All right,

uh, I don't know anything about this. Send me a link.

So I had to send a link and they're like, OK, well, we'll prescribe it.

And unfortunately, it didn't work for me.

And the drugs that they prescribe for it don't work for me either.

So it's just

battling that not only is it a little known condition,

there's more research into it nowadays,

but given they've been living with it for 35 years,

it's really, really frustrating that not only do the medications not work,

nobody just knows anything

about it. It's you're just left.

Yes, they just give it a name and send you on your way, and that's it.

There's no support. You're not. You're not signposted anywhere.

It wasn't until I got my diagnosis of osteoarthritis

that I was able to access. Um, pain management

and I Yeah, I had been living with it for all those years.

Yeah,

well,

that just sounds so sad for people. So can I ask you, um,

about so you talked about trauma and early trauma

when you've been kind of going for help? Uh, like, so do

do people have to deal with, like, all of that stuff as well as like,

dealing with the pain?

Like what would good look like in terms of the support people would need?

Um, nobody

in my journey with pain. At

no point in my journey Has anyone ever linked

what happened in my past with what I'm experiencing now.

And I've had a lot of therapy over the years.

I've I've had a lot of interactions with

the psycho with the psychologists and psychotherapy,

and and not once have they ever put the two things together.

Um, what would good look like? You said,

I think

Well,

I I think health professionals need to be educated

about the the experiences of people living with pain,

because through this project

you realise that we're all going through the same things.

We all have the same grapes and complaints and experiences.

So there's clearly the system is,

is broken and, quite frankly,

not fit for purpose for people with long term pain conditions,

Um,

and I think

more well, obviously more research is is needed,

uh,

to get things rolled out within the NHS for me.

I would like to see ongoing support

from whether it's pain management or primary care or whoever whoever it is that it

obviously depends on

what your pain condition is. You know what diagnosis you have,

but the fact that you basically get given a label for it

and then just left unless you specifically make a point of checking in with your GP,

there's just no support at all,

and that makes

what am I trying to say.

I I know how to deal with my pain.

I've been living with it for so long.

However, when I come into contact with, say, for example,

the department of work and pensions

they're looking for, they want to see a big,

long list of medications that I'm taking.

They want to see a list of hospital appointments and doctors, appointments and

and allied health professionals that I'm dealing with. And I don't have any of that.

And that's because, obviously, I've been living with it for such a long time,

as many people have,

and you just

there's no system within the NHS to

to keep up to date with how your

condition is progressing. I don't know.

It's likely because there's just no funding for it. There's no time.

There's no funding, there's no staff.

And so then you come into contact with the department for work

and pensions like I have when I was unable to stop work.

And that is just the most humiliating experience there is.

I mean, it's one thing to not to be to be gas lit by your health professionals,

but then you come into contact with the DWP,

and then you get assessed by someone that's not

even a health professional or not experienced in your particular

health problem,

telling you

that you're just making it all up and that it's not as bad as you say it is,

and they're not going to give you any money,

and then you have to really, really fight against the system to get what you deserve.

So the the problem within the NHS that we experience

has a knock on effect on to things like that?

Yeah.

And I I can imagine that has a knock on

effect from people then wanting to go back into employment

and

housing. All of the things that support people to live.

Yeah. Yeah, Absolutely. Exactly.

I've had to deal with all of that because before I met my husband,

I was in social housing.

Um, I was actually homeless at one point, living in temporary accommodation.

And you're trying to say I need somewhere that's on

the ground floor because I can't manage the stairs.

I need this. I need that.

But you have. You have nothing to back it up.

All you've got is a diagnosis of osteoarthritis, fibromyalgia from your GP.

And there's nothing because they just don't.

They just don't do anything with you.

There's not even like a light touch checking in from the pain management.

How are you?

Do you need anything? We've started offering this.

We could sign posts you here there's nothing. There's just

it's, like, out of sight, out of mind.

what would you hope

that the Kate Project achieves? What do you think like

the best kind of solution would be for people like yourself?

I hope the project

will,

by bringing together people's experiences of pain,

highlight the areas, um,

that we all have in common because we all have different diagnoses.

We all have different reasons that we live with pain.

Yet

we have very common experiences within the health service, and

I hope it will highlight what those experiences are

and lead to lead to change.

Because, like we said earlier,

there are millions of people living with chronic pain.

I mean, it's a it's a really big percentage of the population, so

it will help. It would help in so many ways not just

help with,

like alleviate the burden on the NHS eventually

by giving people the support they need.

But it would help people's mental health,

and that would alleviate a burden on the NHS.

It would support us

more efficiently for those of us who could possibly go back to

work that would help us with our mental health as Well,

you know, and all of that would improve your quality of life.

Actually, that's something I've not mentioned throughout this story.

But how it affects your quality of life. And

mean, living with pain obviously affects your quality of life quite a lot.

But when you're poor because you're living on benefits

because you can't

either get the

the money that you deserve or you can't deal with getting into work and all What,

that, um, what that entails, then Obviously, your quality of life goes right down.

I mean, I was working.

I've had a lot of health problems over the years, but I was working full time

before this happened, and I was in a long term

contract role.

And once I started experiencing pain,

um, at the start of that year, my contract was due to end in the October of that year,

and this is really humiliating, actually.

So a whole load of people got taken on with this money, Um, that this, uh,

public sector organisation had,

and every single one of them

got made permanent except me.

And I had to interview for my own job.

And not only did I not get my own job,

but someone who was a grade below me and in

a completely different team who didn't do my job,

got it.

And then I was told that I didn't need to keep coming into work.

I could just go home,

and I could just use that the notice period to look for another job.

It was really horribly humiliating.

So you get humiliated by the any

not humiliated by the NHS.

You don't really get fully believed that your pain is as bad as it is by the NHS.

You get completely humiliated for the department for work and pensions.

And if you're in a job,

there is potential there to be humiliated and just not treated fairly

and just thinking about all of those things that

I suppose people say good determinants of health And, like, well,

being having a family, having a job, having friends, you know,

maybe having Children, if that's what you want,

being able to

get out and about

just really challenging, if that's what you're dealing with.

Yeah, At one point when I was first diagnosed, it was so bad,

I was completely housebound, and

unfortunately at the time, I was in an abusive relationship as well.

And I didn't have friends, but I could call on.

I didn't when I was working, I at least had that as an escape somewhere that I could go.

Um,

yeah, they're not being able to get out, especially,

and the whole benefits situation is tied up in that,

Um I remember at one point a social worker came to my

door with £20 so that I could get food for myself because

I was in a situation where

my the

my benefits had been.

My own benefits had been stopped and the abusive partner was meant to look after me,

and he decided that he wasn't

didn't really want to be in this relationship.

Maybe felt a bit guilty because I was so ill. So he couldn't quite kick me out just then

and he just wouldn't cook for me.

He wouldn't buy any food for me, wouldn't do anything. And I had no money of my own.

And I couldn't go and get a job

because I didn't have any pain management, and

I couldn't. The doctor surgery was seven minutes walk from my house at that point,

and I had to get a taxi. I couldn't walk.

I mean, I lived up two flights of stairs as well. It was absolutely horrendous.

So,

yeah, losing my job through my pain condition,

er had a knock on effect everywhere,

and I experienced the worst mental health I've ever had in my life.

It was really, really bad.

Um,

and

yeah, that didn't go down well at the DWP assessment,

I got treated very badly by the department for work and pensions.

And then I found out that they ask

everybody those horrible questions about mental health like,

Oh, so you say you had suicidal thoughts, OK, why didn't you commit suicide?

You know,

if you planned it, why didn't you do it?

Yeah, that. I mean, that's common.

And, um,

is horrible. So, you know, you were saying earlier, Is there stigma and whatnot?

Yeah, There absolutely is. And it's

I I think a lot of

people so say colleagues at work, they don't realise

they're doing it. They just see it as Oh, no. I've got to carry their workload

and they see it from that perspective.

Your managers don't believe you when you call in sick

or Maybe if you need an adjustment or something like that,

the department for work and Pensions assume everybody is

lying and you have to prove yourself as being,

you know, telling the truth.

And your medical professionals just don't really

want to help. It's just like, Well, we've given you a diagnosis.

What more do you want? And

that's really what it feels like

and all of that.

All of that affects you mentally, which affects your quality of life.

Thank you so much for sharing some really difficult stuff.

Um, I just wondered if you had anything chaos you wanted to share with me about

living with chronic

pain.

Um,

thought

I actually kind of lost for words. The reason I'm lost for words is

I've lost hope,

not hope in my life that I'm going to live a happy life. You know, I'm happy with I.

I love my life. I'm happy in my life,

but I've lost hope in the health service. I've lost hope that

they'll they're there

for people with pain

to look after them and help them and identify

identify things like

what could be causing the pain, or why one person experiences

pain more severely than another, like with fibromyalgia, for example,

and get them

the extra help that they need.

So, for instance, when I was initially diagnosed with chronic pain,

um, I

wasn't offered any kind of counselling. I was

sent to a pain management programme, which is basically,

you just need to distract yourself from your pain,

and then you won't feel it quite so much and you're smiling there.

And I think maybe

that's something you may have experienced yourself.

Just think about other things, and then it won't feel so bad.

Um,

sorry I keep losing my keep losing my train of thought.

I just

I I wish that

health professionals and all the kind of allied

health professionals like everybody in that whole team

of people

would actually just really listen and think.

Does this person need some other kind of support

as well and treat you as a whole person?

And instead of trying to squeeze you into a box and say right,

all you need to do is just distract yourself and get out and do loads of exercise,

and that will really help

say, Well, maybe this person might need some mental health support.

Or maybe maybe they do need company.

Maybe we could sign, posts them to a befriending service or

what? Whatever it happens to be. For the individual, there's too much pigeon holing

and

gas lighting.

There's just too much gas lighting. That's certainly

that's certainly been my experience throughout.

And

whenever you go

to the GP about anything

at all, you could have a sore toe

and they'll say they'll look at your records. Oh, yeah, So you've got fibromyalgia?

Yeah, it's just your fibromyalgia.

You don't get treated as a whole person and just don't start from

scratch, really? And I I have actually been misdiagnosed,

um, with illnesses three times.

I think now so far in my life, one of the times I actually had cancer.

Now

it wasn't connected to my pain condition,

but it just highlights to me that

I know GPS have very limited amount of time,

and especially now that thing I was reading before I came on here.

But that's what people were moaning about,

that you can't get an appointment when you do.

You've got 5, 10 minutes to try and get it over. They're short staff.

They're underfunded. I understand all that. But

given how many people live with chronic pain,

it's absolutely clear that changes need to be made.

And

I just hope that

I mean, I'm part of one small part of this wider project,

and I just hope by the time that all the different parts of it

are completed,

that it really leads to real change

and that by doing something like this

along with all the other people that are contributing their stories, that that

someone will listen

and go, Wow, we didn't know that.

And and really sit down

and, you know, make changes that will will benefit.

Well, they may not benefit us. Things happen very slowly. I know that.

But, you know, benefit others.

Absolutely.

Do you have any questions for me

when you're listening to my story?

Because I can see, sometimes you're nodding and you're kind of smiling, and

and I I feel that you've had a similar

maybe a similar journey in some respects.

So, like, I haven't really, um it's not something that I really speak about. So

at parts of your story, like, um,

you know, when you invite to a social do

and you just can't go. She's in so much pain. How? Then you start to lose friends.

Um, I'm really lucky to have a husband,

but I have fought with DWP for them to even

understand.

Um I'm really lucky. I have a good GP.

But even him as a good GP is very limited in his thinking and his beliefs.

And I've done

every single programme you could imagine.

And no amount of exercise is going to stop the pain telling me to pace and get

an a a egg timer and do things in blocks of five minutes or three minutes.

Um isn't really what I call living,

and

it just feels like that revolving door

of you know, you you're always gonna have to explain this.

You always have to be the more educated

you always have to be. The more,

um strong.

And

it's sad. It it just make Yeah, it's it's completely bonkers if you

listening to someone else helps you think about your own experiences.

But then I wonder what people would think about just us having this conversation.

This is not

a nice thing. It's horrid.

No, and it and it affects every aspect of your life it leads into.

It leads into everything

there's not. I don't think there's any aspect of my life that isn't affected by pain,

and

they just

It's just it feels like this when you're

trying to communicate with the medical professionals,

or especially the department for work and pensions.

I'm actually quite lucky in that. My, um,

one of my benefits has been rolled over to Social Security Scotland,

and I've actually been involved in market research for them,

helping shaping it based on the really horrific

experiences of people dealing with the DWP.

So I'm hoping that their,

um their system is going to be fairer. And, um,

one of the things they're not doing is

they're not contracting out to private firms to do

assessments. In fact,

well, when they've changed, they're not even calling it assessments.

They're calling it consultations,

and, um, they're hardly do any face to face.

They're just It's all about what,

the evidence that you submit with your form and your letters and

and what not, But again,

there's that anxiety already for me.

So I've been transferred over, and I'm just waiting for it to review

what evidence do I have. I was my osteo arthritis was diagnosed in 2015,

and my fibromyalgia was diagnosed officially

in 2012. What evidence am I going to send?

So there's that. That kind of

because the NHS doesn't have a policy of checking in with

people that live with chronic pain to see how they're doing.

Can they be of help?

Because also, as we get older, our bodies change and we do need more help,

or our condition is.

If you have arthritis, that's that's a progressive condition,

so your needs are going to change. But

it's very much a reactive service, and

I know for a fact if I go to my GP and say

I need to be seen by the pain clinic again.

But I'm going to wait over two years for a referral because of the pandemic.

I mean, it was already 18 months backlog before

the pandemic. So then you have to consider,

Well, I might have to go private,

but I can't afford to go private because I don't have a job. But could I take a alone?

You know, that kind of thing and why? Why should we have to pay

to have them a decent amount of time with the GP,

to be heard and to maybe for them to say, Well, yeah, maybe we do need an updated scan.

Or maybe we do need to run this particular test.

That's what it feels like to me. I've actually signed up to a

I kind of wait and list thing.

Um, it's like a bridge between NHS and private health care

so that if you've been waiting over six months for a procedure or an appointment,

they can step in and get you seen privately.

Um,

and I've actually signed up for that recently,

but

that's only any use. If you can actually get

a an appointment with the G PB get to see a GP who will actually listen

and just not stick you in a nice little box.

And I don't think I've come across anybody who lives with pain,

who fits nicely into a little box because we're all we're all so different,

aren't we?

And our

you know how we experience our pain.

Even the difference between I have a very loving supporting husband,

but somebody else might not have that.

So that's gonna that's gonna change their experience with their pain.

Absolutely.

Somebody might not be able to live on benefits and

may have to force themselves to go to work,

even though they're in so much pain.

there's just

as far as I'm aware,

because

you know my health, my medical team don't check in with me.

There aren't any.

There's nothing

that my my pain management clinic don't

even offer acupuncture or anything like that.

You know, since my knees went,

the doctor said to me, I'm going to refer you to orthopaedics.

This was just a few weeks ago,

and she says,

Make sure you put yourself on the system for physio because

that's they'll expect you to have had a course of physio.

So I said to her, Well, when will I get seen by orthopaedics about my knees?

Oh, it'll be well over a year.

They just really, really honest. Well, over a year

I haven't I think I referred myself to physio

about seven weeks ago.

I've heard nothing. I've had to go private for that,

You know, it's just

how do you What? What do

you do? You know, the thing is, when you go when I went private.

That physio really, really listened. And not only that, they do stuff.

When I've come into contact with NHS physios,

they just they don't they're not hands on and

they just give you exercises and send you away.

Whereas this guy, actually,

you know, gets you to do things,

manipulates it put he does acupuncture as well or dry needling or whatever,

and it's great. He's actually

he worked wonders on my shoulders. I got rid of that.

It gave me relief from my knee pain for probably a good two weeks before it came back.

And yet

I haven't even been seen yet. I've not even had a letter saying

You're on the waiting list to be seen nothing.

And sometimes,

although this is not gonna go away, just having a bit of relief makes it,

you know, much more bearable.

Well, I was saying to my, um to my husband yesterday

that I kind of bombshell went off in my family recently,

and it doesn't directly affect me.

It only affects

mentally. It affects me, but it doesn't affect.

I mean, it affects other people within my family,

and

I feel like I need a bit of mental health support, which, luckily you know, is, um

I don't know if you've met Jeanine through the group,

but she's she's providing and signposting for me.

But I did say to him, You know,

if I wasn't in so much pain right now with this new condition,

because you kind of I don't know about you, but

you learn to live with your current pain.

But then when something new comes along and something else starts to hurt,

that just pushes you over the edge

and you think I've been living with all this pain.

It's just in a different body part now, but that's too much. It's just

It's like the the I always think the buckets already full.

It's just gonna spit out everywhere. So, yeah,

and then it starts to make you feel a bit grumpy. And so you start.

I started to get a bit irritable with my husband.

I don't know if you ever have, like, days like that, where you're just

yeah, exactly.

And I have to Sometimes I'll just warn him in

advance like I'm having a really bad pain day.

So I am so sorry if I lose my patience with you. It's not you. It's really not you.

And luckily for me, he's so laid back. He's just like, Yeah, it's fine.

Don't worry about it,

you know? So I feel very, very blessed in that respect.

It's really great to end there.

Um, thank you so much. I'm gonna stop the recording there, if that's OK.

Um,

let me, uh,

where

you stopped.

Oops.

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Author

streetreporter

Post date

20/04/2023