Skip to main content
Institute Community Reporter
User account menu
Report transcript in: Deb's story of living with pain
Please Report the Errrors?
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,
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,
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?
well, I have to adapt them. I suppose
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
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 the problem.
If I'm travelling
by train, I use assistance, air book assistance, travel assistance.
So things like that, I suppose,
knowing that I can't walk long distances. So
asking people to lift when I eat that
and having shopping delivered I,
So can I ask you, How long have you been living with your condition?
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
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, it's not been easy.
it took a long time to get a diagnosis, for example,
I mean it's fibromyalgia, but they don't
give diagnosis very easily. I was sent off to a
rheumatoid arthritis consultant
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
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 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
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
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,
one of the other members
has five miles,
and she gave me a
huge spy of
or le me a huge spir of information to look at.
So that helped.
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
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 just had to
what I could do
the do the GP that I was under at the time
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
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
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
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,
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
you know, you only hear what you've been told.
And I I
assume And please do correct me.
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 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,
So you also said, um,
just a moment ago,
the kind of
links with early childhood experiences,
and I was wondering if
you've ever received any support for that or
yeah, and I had to have it.
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
things have happened and
it can't just be
make better or
just doesn't just doesn't just doesn't
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
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
and it was also
that I had was
early years of me having the pain.
I mean, it wasn't
the mental health services weren't that helpful about the pain
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
Physical health complaints completely separate for mental health.
I mean, it's quite unfortunately, it still
can be still quite common that
mental and physical health are seen separately.
with cancer diagnosis who can't get mental health support.
unfortunately, I mean,
one person. So
everything interacts with
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.
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.
in some ways
I think the others would say this as well.
patient and public
involvement group has kind of provide you that
to some extent
a space where
people have been able to share
were able to share
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
a lot of frustration for people living with.
And there does seem to be a common thread
some kind of trauma
things like that that
I don't know whether they exist or not.
I've been told that
I tried to find
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
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.
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.
but also, I guess,
knowing where to access
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.
to be able to find
because I think
it's very difficult for people
who aren't in pain to
it doesn't go away.
So it's not like a cold or
or even most cases of covid. I suppose
you can go,
you can have and then you're better.
And I think that's
what a lot of people like Is that understanding?
And it's very difficult.
Know how you answer somebody when they ask you how you are.
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.
if it's always there.
Not any different to the last time they asked you so.
don't seem to understand that.
So this continual thing,
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
it is continual,
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
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
a walking stick at that particular moment in time,
it doesn't mean that they're still not struggling,
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
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.
What are your hopes?
That, uh, what what's your hopes
as a project? So what are you hoping
as a result of cake and its work will happen?
A and the project associated with it to try and find out
some more about why pain happens.
are telling your brain that you're in pain
when there isn't actually anything causing
in the present?
I mean, that was how a friend of mine who's a physiotherapist
it to me.
and for a long time,
there hasn't been much research
going on about
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.
can stop being effective,
even if they are effective, have side effects.
it'd be good if there was some way of
a lot more people aware of
these issues, so there's more understanding
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.
and is there anything else you wanted to share with me about your experiences of
being involved with Cape or living with paint?
yeah, I mean, I think
he's been past his chair,
the P p I group think people find it's a safe place.
it's not always easy
for the meetings to be scheduled where everyone can go
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.
there will be opportunities for people to meet up,
and I think there's
What's the year that they have?
I think you
said it was in April.
mean, it would be helpful
if people were able to go to that.
I guess it's just
making steady progress.
Have you got any questions for me?
well, I guess the next step after this is on the sixth of December, isn't it?
So on the sixth, we will look at a few people's stories.
Um, so so far I've managed to
Cape members and one non cake member.
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
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.
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.
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
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.
there was other support that so the I think
the chair of the
group was going to be available for people to talk to.
it may just be that
it takes a while for people to get in touch with you.
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,
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 way. Um, because I think it can make a big difference.
so what I'll do is if you're OK, I'll stop the recording there,