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Report transcript in: Gillian's story of living with pain
Please Report the Errrors?
So
can I get you to introduce yourself?
Um, my name's Gillian car.
Um, I'm from Glasgow. Uh, I got involved with the research, Um, through
arthritis.
Um, because I have arthritis myself and fibromyalgia and a few other things.
We tend to collect things.
Um,
but yeah, it helps give me a purpose to
to do these things. And, um, that's how I ended up.
They're coming to share my story. Um, which I'm excited about.
I've not really been given the chance to tell my story
in any shape or form. So,
um, I didn't even know this, uh, work,
so I think it's fantastic.
Thank thank you for that. And really glad that you can share your story.
So what role does pain play in your life?
King is
I
like to describe it as a constant companion.
Um, because it never goes away.
And that's the aspect that I think people don't,
um, grasp is that
they may have toothache and things go away.
But imagine toothache in the bone all the time,
and you can't escape from it,
and it gets
there are days. I can handle it better than others.
Um, where my barriers kind of
break down a little bit and they can't take the pain anymore,
even if that pain is at the same level
it can.
That day is just a breaking point.
And I like to call arthritis arty,
my companion
And like, Artie is giving me a hard time today.
Um, is what I usually say to like my partner or my family to try and convey
that I'm
in a lot more pain.
And
I think trying to communicate it is the hardest part.
I spent a long time denying it,
and
so it was like this silent
thing that I didn't tell anyone about,
um because people who treat me differently,
Um,
as soon as they know
that you're in pain
and they
it's
is one thing which is is nice and it comes
from a AAA place of empathy and it's appreciated,
but it's
it's when other people are like, Oh, well, you know, uh, that's what my granny had.
You can't have that.
I've spent most of my life being told I was too young
because I started showing signs when I was 11
and
I had, uh, my GP telling me that the pain was all in my head
and that I was a little girl looking to get out of school.
But I loved school and my teachers pet and proud of it. You know, Um,
but it's, um
I think it comes down to not being believed.
You feel like you're a liar until proven innocent,
even by people that should believe you,
Um,
and kind of go from there like medical people.
Um,
so I think it's led to isolation.
Pain is all that is this multilayered thing for me,
and it's always there.
It's never gone since I was a young kid and I'm 30 now, so it's more than half my life,
Um,
and you just
sorry, I'm probably going around in circles.
Um,
no,
it's fine.
It's hard to talk about
because I don't talk about
it. So when I do, it's like
bringing down those walls
makes it all more real.
I spend a lot of time
telling myself I'm strong and I can still do it.
Despite my body.
It's a
It's like a self meditation, almost and
to keep me going,
but when they speak of it openly,
you're accepting that. That's what it is to say it out loud, and
it's it's really hard for me because I
I've not done it.
I
I've not even been to therapy or
counselling for pain.
Even though it's been happening to me for over 19 years,
my twin sister doesn't have P.
Um,
there's one minute between us. Um,
so a lot of people find
themselves competing,
which I think not clear.
And
it's not fair to compare someone that doesn't have pain every day
to someone that does who was able to finish their degree and
have a career.
Hm. Um,
I tried
to do two degrees,
and I failed it both.
I don't like to say failed because my condition kind
of like took it from me in a way because
intellectually, I loved engineering and welding. I loved it, but I couldn't do it.
My hands, my arthritis,
have to splint every day, and
the pain in my hands is
it's getting worse.
Um, as I get older and
I I went into teaching after that,
Um,
and having a suppressed immune system and being
around kids wasn't one of my best ideas,
but, um,
I loved it.
Children, they do not judge you.
They just
loved me for
for me as a person. They didn't care about my condition. They didn't see it,
which was amazing to me, and I loved it.
But my absence is
led my professors to turn up and, um, remove me.
I
wasn't even allowed to say goodbye
to the Children that I've been helping teach.
And I had told that
I had been given some understanding because in the teaching profession,
they do try,
um, but
it's
the head teacher had arthritis, and I thought, Well,
this it's going to be wonderful, this nursery that I'm working on.
But
it turned out
just because she could use crutches didn't mean I could use my walking stick.
It meant
that I was a hazard, and I was treated differently. And
it
it's weird to be treated differently by the adults
and then not at all by the Children in the same venue.
It's just a very weird experience, and
and I miss it. I I do miss teaching
you.
I I've talked to a lot of people that have chronic pain that are older,
and it's set in later in life,
and they were nurses or they were
doing all these amazing things, you know, and
had careers in life.
But I wasn't.
I didn't really get that far.
It's, uh,
I feel like that's what pain has
meant to me is that
I'm seen as someone that can't finish things.
Some people see me as lazy,
and it's hurtful because
you don't feel lazy
when you force yourself to get up out of bed,
even though your whole body is telling you not to.
Sorry, it's fine. You're doing so well. I'm just so
I mean,
the amount of effort it takes to
do things when you're in pain, like it's the opposite of being lazy. It's being
I I just, um
I don't know like I always think of.
It's like the smallest things can feel like climbing a mountain,
which are
no, I
know.
Yeah,
even the simplest things. Like I tried to open a jar of jam
and my partner found me sitting on the floor crying because it hurt my hands so much.
And all I wanted was some toast and jam,
and I thought I could do it by myself and I wanted to,
because you need that independence you need
to feel like you've done something today
because then it feels like
the disease is winning.
Even if it's something small, like brushing your hair or getting up,
you need to feel like you've done something because we
as humans kind of
We need that sense of achievement, that sense of purpose.
And it's it's hard to hold on to that
when
the pain makes everything so much harder.
And
I used to explain to people they were like, Oh, why don't you come walking with us?
Because we were all poor.
And in Glasgow, the best place to do is just to walk about and go around all the parks.
You know, when you're poor, you just
you go for we join and jumping on and off the subway. We called it
a
safari. Um,
but, um,
I couldn't do that.
I I I couldn't keep up.
Um, they would often walk so far ahead of me that I that they would
they wouldn't notice when I went home.
So it
walking has always been more of an ordeal for me than get
a
thing to get for me to be,
and I know that sounds very
dramatic,
but
and my toes feel like they're broken a lot of the time, and
my arthritis
likes to go after
what I call the be crispy joints, the small joints in your hands and your feet
and it.
I've taken a lot of damage because it took a
long time to diagnose me because of not being believed.
I was
put through a barrage of tests
over six years,
never really explained what a lot of it was,
and I never really knew what was going on.
They would explain to my parents, but then I wouldn't get to explain things to them.
Um,
and then when I hit 18, my parents would stop coming
to
it might have been before then. I can't remember.
I just started, ended up going to hospital by myself,
and
it would have been really good to have someone to go with me at any kind of support,
because when you're in pain people can
manipulate you for for want of a better word, it's more like doctors are like, Well,
you can't really feel like that.
And then I was kind of persuaded out of
how I was feeling,
which I've since learned is medical gas.
But I didn't know that.
Then when I was a kid, I didn't even know about any charities that might help me.
Like breast arthritis.
They were founded the same year that I was diagnosed. Well,
er,
arthritis care. Scotland was founded the same year.
Um,
but I didn't find out about it till I over 10 years later.
The same post thing is so terrible
that I feel it. It's
shocking in a way.
And I hope that maybe people like you guys can try to highlight things
that would be good for people
working.
Um, because there's not an awful lot of support.
I think that's why we become so insular.
Hm.
Sorry,
I I'm going off in all these different.
So So that sounds really shit,
um, being gas
light or medical.
So, like, if you could go back,
what would you want those people to hear,
like what needs to happen differently for people like us?
I'd like them to treat me as a whole person,
not as this one specific problem that they want to.
It's It's like I'm a puzzle that they want to solve,
and when they've solved that part of my puzzle.
They're like, Oh, well, that's me done. Bye bye.
Go.
Um,
when really, that's only a small part of a puzzle, that of me as a whole.
A lot of them don't give you a med and be like right, that should sort you.
But then not think about
the side effects of that med medication
and whether or not I can take those side effects or whether I want them
in my life as well or whether or not I can
There's pros and cons I found.
So what you put in your body and what you want to put in your body.
And I didn't know how much control I had.
I was given an injection that I
I knew from the start. It wasn't good for me.
It was causing severely depressive thoughts, and
I I already suffered from depression. But I knew that this was different
and it was it was bad and
and I just decided No,
uh, this is not good for me. What? I was reading online the drugs called
Mina.
Um and I
it
nearly destroyed me.
And it caused nerve damage in my leg as well. From where a pen misfired.
It didn't even put medicine in.
And now I've got a part of my leg where I can't feel anything.
And, um when I tried to tell the doctors, they were like, Oh, show us the pen.
And then they took the pen from me,
so I didn't have any proof anymore.
Um, so it's
I don't have a lot of trust,
um,
with them, and I feel like
if they
what I would really love is
when they meet someone, try to stick with that person.
But when a medical professional knows me like my rheumatology nurse,
she knows I won't contact unless I really need the help.
She knows me very well. We've been together like seven years now,
so
she's gotten to know me a lot.
But now they're trying to promote her, to be head of the world.
And I'm getting shoved off to other people.
And all they keep saying to me is, Oh, I need to go talk to her, then.
Oh, I need to go talk to her then.
And I'm like, Well, why can't I just talk to her?
Because it would have been fixed within like 10 minutes if me and her could just speak
and she knows.
Um whereas I feel like there's a lot of road blocks
and NHS where you get sent to people that are like, Oh, I'll have to go check that.
And then that's another two weeks of a
week,
you know? So it's, um
I feel like if they considered that if you're in so much pain that
you're on the phone crying and needing help that you just your existence is
awful and not worth living
that they should really try to
make it a priority to help with your well-being.
Whereas I've got a lot of people saying to me,
Oh, well, you're fat. So you should lose weight and
maybe that will, you know, put some less weight on the bones,
then maybe that will mean less pain.
And these are
men,
male doctors, some female. Actually, yeah, I'm not gonna lie on both sides.
Um, it's, uh, it's not great.
Um,
and I think it's the lack of empathy,
the more knowledge they accrue. It's like
they can't seem to fit empathy in anymore. And I'm not saying they don't have it at all
because they're wonderful people. they go into a profession
for caring for looking after people
they want to help. It's just when they get all this information in their brain
and years and years of slog and hard work and
all you know and and it it should come to something
a job with respect and we do respect them.
But sometimes they don't get respect. Or
maybe their superiors aren't that great for them.
I've seen a lot of junior doctors being,
you know, their superiors weren't nice to them, and then they're not nice to me.
So it's like
down
the line in a way,
um,
so I feel like it's not all their fault.
And that's why I want to get involved in the pilot programme with
arthritis
to try and talk to medical students,
because I feel like if we try and talk to them young
and give them a perspective of people like us, which is exactly what you are doing,
giving them a direct shot into our lives, you could send them.
You know, our videos and be like
just watch these, watch these people
learn from them if you can. If you don't take anything away, then
we need to have a chat. You know, like,
um,
I feel like that's
I know That's an awful lot to say to someone, Um
but
I would love it if
if they tried it
and it's such a hard job,
But I feel like we need to put measures in place
for them to look after their their well being as well,
because they're not thinking of their own well being.
So I'm not gonna think of it in others.
So I just It's a whole Met
tale. Sorry.
No, I was just like you took me on such a journey there,
and I was
thinking
that
it must be really difficult if a doctor
learns
to want to fix something that actually pain sometimes can't be fixed. It's
even with medication.
Even with support people still living with that, it must be really difficult.
Yeah, in a way, I think they could be in denial that they can't
that person in a way.
And I think that the way of dealing with it is they distance themselves a bit
because they
if they care too much about everybody, I think they go mad
and you don't want that for them.
But that's why I think that they should only be connected to a select few
and
really get to know those people and not overwhelm them with all the
loads and loads and loads.
But I suppose we don't have enough staff. That's all I'm hearing now.
Any time I try to contact any medical professional that
were understaffed or they just say covid and shrug,
um,
which is lovely because it doesn't really explain anything.
Um,
especially when you're trying to get help,
because you just feel like, oh, well, the world doesn't care about me And
that's kind of how you're made to feel,
though as a disabled person like you're a burden
because
I don't know. It's like every day every person I know that works.
They're like, Oh, well, I was working. You wouldn't know what that's like
or, you know it's a
There's a sadness for us because we want a job and we want to be productive,
and we want to help people and be part of society.
It's built into us as humans,
so it's
I think it kind of offensive that even my own family, like my twin sister,
would be like
you don't have a house, you don't have a job.
You finished the degree
like she would use these things as a as a thing against me when
it shouldn't.
We put so much pressure on people to have these milestone.
Hm.
I was expected to go to do certain
things because me and my sister were considered smart
and from
from all our teachers. But
I started bombing my exams because of
my condition. And because I didn't have a diagnosis,
I couldn't get extra time.
And I didn't know why I couldn't write and why I was in so much pain.
And all these teachers were like, What's wrong with you?
We know that you know these answers and
acting like it's my fault. Like I was doing it on purpose.
There's
I think it leaves scars
for a long time, and
I think
they should really try to prioritise
help with mental health
because I've had people see me.
Oh, you've got depression.
And
it's just reactive depression because you're in pain all the time.
And, um,
that could be true for some of it,
But, um, I had it before.
And if I'm having a good
day. I can still have a low a low day,
so I think that it's not that simple.
And
I was never sent for help at a pain clinic or
counselling
or an innocent, really.
And I've had to face them
to see my doctor, to see anyone, to get help of any kind.
And it's exhausting.
And I've kind of given up with covid right now because
I can't I can't seem to get through to My doctor
and
the reception team are triaging
and
they're lovely. But they are
being horrible
and
saying that, like trying to diagnose you in a way like a doctor, or like Oh,
maybe you should go to the pharmacy when
as a person
who has a long term condition, you would think that
you have priority.
But you you often don't
unless you're willing to go on a phone and just
start acting like a crazy person crying and screaming.
Then someone's like, Oh, well, we better do something,
Um,
but you don't always have to
Oh,
you don't always have the energy for it, you know? And
yes,
it makes me not want to look after myself
the way the health system is right now is
in fact, um,
on Friday,
I got my medication delivered
and it was over a week late,
like 10 days, and I ran out of medication.
So I phoned them and I said, Look, I need my meds. I have none.
And so they got some out that day,
even though it had been
10 days late. They should have been out sooner.
And when the guy delivered my meds on Friday there he, um he said
to my dad because I couldn't even get down the stairs
to the door.
He
he said they weren't going to deliver to me anymore that, um,
it wasn't possible and that I should try and find somebody to try and help me.
That's like the only pharmacy I could find in Glasgow that's still delivered.
My
doctor's surgery specifically sent my prescription to them
so it could be delivered because of my mobility.
And the guy is
answering the door with my
and things like he's he's
not seen me very often,
but
he knows that I struggle to get out and they've just taken it away because they're
too rushed or I don't know they don't have someone to do it,
and it's just totally through me because now I don't know how I'm gonna get my meds
in in January
and I'm supposed to order my medication around my birthday
in January, and
it's just made me not look forward to my birthday because
I know I'm going to have to be going on a
bunch of different phones
trying to organise a pharmacy that will be willing to deliver to me
or I'll have to try and go there myself using a wheelchair or
try to beg someone to go and
go for me
because I,
my mom and dad, are both disabled.
They
really look after themselves,
and I I
can't ask them to do that
for me. It's just too much. And
I told them that
and my partner works. That doesn't stay with me, so
he can't do it either, because the pharmacies are shut by the time he finishes work.
So,
like it leaves me in a position where I don't know how I'm
gonna get my medication and they do it to me a lot.
But this isn't the first time that they've
They've said right, we're not delivering anymore.
They did it once before and I phoned him up and I was upset and crying and he was like,
Right, OK, OK, we'll keep doing it.
But I feel like they've just been waiting
for another opportunity to do it right before Christmas. It's just like so.
Oh, it's just not nice.
It sounds. It sounds terrible. It sounds so
sounds like a very hopeless situation. You know, if you can't get out and about
how you get,
I
just don't know how you get your medication.
I know I
I'll end up having to plan a whole day around it where
I try and get up and get myself ready to
try and go myself.
But that would be like a whole day and
the next day, maybe in bed,
because of forcing myself to go out
because I don't go anymore.
I really struggle,
and especially right now with the A
and everything,
it terrifies me because I've had holes in it.
When you take a hit to one of your joints, it's
I end up getting damaged there.
If I fall
and hit certain,
I don't know.
Other people have said that about arthritis. But if you take
a fall, you can often get arthritis in the joints.
It
takes a hope.
I worked here in the park one time, the only time I've ever gone to a festival
in my whole life, and I was working it and sleeping in a tent, which was awful,
never did it since.
But
some guy
jumped on top of me and
hard money.
And ever since then, Money has had bad arthritis
and and he, like, landed on top of my knee and everything. And like
they, they even deducted my pay because I went to the medical tent
to get assessed after.
Oh,
I know it's
It's just the norm in a way, though. Like, I think a lot of people think, um,
because we're British. There's a lot of things that we think should be,
but that doesn't mean they are in reality
just because we think that
Oh, well, that's how I've heard it should be. So it should be that,
um it doesn't always mean
that that's the treatment that you're gonna get and
sorry. I'm
sorry.
So can I ask you? Like
what? Why did you get involved with the Cape project.
And what are you hoping like,
What do you hope happens as a result of your involvement and cape?
Um, I like the sound of cake.
I was,
um, showing like, a wee description about it
through versus arthritis.
And I've been involved in quite a few, um, research projects through there.
I've spoken to a bunch of different universities over the years,
and I've done it quite a lot. So when this opportunity came around,
um, the woman who
Maureen, who does the research for verst arthritis,
she sent me an email immediately.
And, um, I thought it was funny because the lassie, um who's
who's like our
liaison for the cake was called Gillian as well.
Um, so I was like, Oh, it's meant to be Let's do it.
Um, especially when I heard about pain and its correlation to childhood.
Um, because I feel like there's
there should be a a connection. Somehow
I I don't know if everyone is the same, but a lot of people that I have met
that have conditions of some kind
I haven't had it easy.
And there are people that I connect with.
Um, so it
it's a It's a running theme that I've noticed in a way.
So it's it would be really interesting for me to find out if,
like where it goes with it, because they're using
the cohort study. There's there's so many different aspects of it, not just
our
group, um, which I think is great.
I'd I'd love to meet them all in person
because they've become like a wee support group.
Um,
there's not many support groups, so I feel like Kate has become
an unofficial one in a way they might not have meant to, But it, um
they brought people together and we were able to talk about our pain
with others that are in pain around,
and it was seen as being useful.
And that was like,
Oh,
that that that's like a revelation because any time I've tried to speak about pain
or even just try to talk to someone about it to try and get it out of my brain,
it
you know, people
run away from their own pain, never mind others.
So I've often got the reaction jelly or
people just actually don't say anything and walk away.
Um,
which particularly hurts because you feel even more invisible
than you already are, especially when people don't even acknowledge what you said.
And it's particularly hurtful.
Um,
so I just need to drink.
No worries.
All that chatting.
But yeah, I I found it
because I can't work. And I've been so not fit for work
and been able to do a wee bit here and there and actually have a somewhat social life.
Through video calls with the people,
you feel useful. You feel
like your
your knowledge has been taken
for what it is. Um, and
it's a It's a nice feeling,
Um, because it gives you a bit of purpose, and it makes it kind of for me,
it makes me feel like the pain is
not quite worth it, but like it, it has a meaning somehow,
because I'm gonna help other people. Generations. Maybe I won't meet them. But
maybe it will make the world better.
And if if I can help that way, then
then I can. Then I will.
And I've met a lot of people that are in the pain that feel the same way.
And I don't know if it's because
when you have a big day. You can't bring yourself to heart, Father.
You just wanted to help him.
Absolutely.
And you've been so
you know,
just sharing your story. I know it's not been easy,
but
I know it will make a difference. And,
you know, I'm I'm glad that we we got the chance to talk.
And I'm glad that Kate's got your stories and your involvement.
What? What do you hope?
What do you hope people understand from these stories?
I hope they understand it
or just real people to not treat as different
and
to just be who
you always were. It was.
It's when people think they have to change or
they feel like they're forced to change around you
that
you lose people.
I've lost a lot of friends,
and they're still friends with my twin sister,
which is particularly hurtful because it's obvious,
um,
that they just
didn't want the extra hassle
of someone like me at a party. Maybe,
um
but I am.
Oh, sorry.
It's OK.
What was your question again, Mum? But I'm just totally frazzled.
So I think my question was, uh,
I was asking you, like,
what
do you hope people take away from these stories. What do you hope people learn from?
Um,
Well,
yeah, I just, um
I've never really thought about
what they might take away.
I don't want them to be upset, but I want it to leave an impression.
And
so that they
if they see someone
and that's struggling,
they might think of
me or one of the others
and think, Well, what if it's like that person
and maybe it will change their approach?
Maybe they'll go and help that person.
Maybe. I don't know. Maybe they'll be kinder.
Maybe they won't just think. Oh, they're drunk
or they're this.
When I was young, I
was taking methotrexate,
which is not my pan.
And then
I felt dizzy and I laid down on the street because I was going to collapse
and I put my legs up on the seat of a bus stop
to stop myself from fainting. I was trying to get the blood back to my head
because I didn't want to pass out in the middle of the street,
and some woman was walking past and she was like kids these days on drugs
and just kept walking,
and
it's always stuck with me because
she didn't know me.
Yes, I was on drugs, but not the kind that she thought I was on
and that they were having a bad impact on me. And she could have checked if I was OK.
You know, um, I think people jump to the bad
very quickly. And I think if they could jump to the good and think
that's a person
just like me, you know, like
I think the more we do that, then the closer we can get to a better world.
As corny as that sounds,
I I don't think it sounds corn corny at all. I think it's what's needed,
I think.
Certainly, um,
knowing that there will be
people with, you know, medical professionals, hearing these stories,
knowing that,
you know, believe people and
treat people, you know, and that why this sort of thing so important?
Yeah, I I do think it's so important and it's wonderful and
it
it does feel like a safe space with yourself. I
think because I don't know if it's because I can feel that you understand
and I don't know,
like there's there's a sort of kinship with when you meet other people that have
or
and
they just cannot get it.
And, um,
I think it it kind of it helps us to be able to open up when
there's people like yourself. You know, um,
it even makes me want to get involved.
But I don't know if I'm in the right headspace
because I end up sitting there greeting everybody's stories.
Um,
I'd get too involved in,
So I, um,
I I do think it would be wonderful. Um, and
with
arthritis not having
as many opportunities for me, I'm looking for other
avenues. Um,
so it's I I do think that
it's it's been a really great experience. I mean, I was scared of it. Um,
but it's cathartic. I found it, quite.
Yes, I cried. Um,
but I tend to do that a lot because I've not processed a lot of things.
Um, so I I tend to tell my doctor they don't have control of my tea
gut.
Um,
but it's, um it's,
you know, it's, uh I don't want to be all
like, why are you in case of
and in a bad place?
I I do have my guinea pig with me
He's my companion.
Um,
also, that's something else. By the way, I've noticed people that are in pain.
Every one of them have heads.
Everyone. I've met every single one of us. We love animals, and I don't know.
I don't know what it is like.
We have to have at least one animal if it's a hamster or a cat, or
like maybe not a dog. It's got a small dog for
us to walk it.
But you know, there's always an animal, and I love that. I just
I love it.
I think,
like so.
I collect people's stories on lots of different issues, challenges,
uh, lots of different experiences.
But I've never collected people's story on pain,
and
I've never even like
when I've heard everyone on the Kate Project talking.
I was thinking about, like, my own experiences that I'm married, but I don't
feel able to often talk about it because
you don't want to be that person always talking about pain
or
how when
I will go and do a piece of work, it might take me a week to recover
and the things and feelings that we've all spoken about,
how much we don't we? It's how difficult it's been in my own life to talk about it,
how difficult pain is on a daily basis. And
sometimes it's like I'm listening to my inner thought,
bit of someone else saying those,
um
and I and I do have a theory about the pets,
which is because I spend a lot of I spent a lot of time at home
being not so so well with the pain of life.
Having a pet is just like having somebody there that just understands you,
and it just so loving.
Um, that's why I've got mine anyway. So I just
maybe
that
Oh, definitely, I'm the same. In fact, I rescued Henry like anything
that we do in the background,
and he you're meant to keep them in
tears. But he was
wasn't in a good house, and I heard about it for a friend,
and I turned up two hours later and was like, I'll give you money for them.
Just hand them over
because I heard that they were going to check him out
on the street and I didn't like that, Um, and I was like, give me the address and,
um So I turned up and I got him, and he was very feral.
He hadn't been handled and things and very scared and
gaining his trust gave me something to focus on.
Gave me something to get up out of bed every day for to look after.
And he lies on me every day. He lies here and goes to sleep,
and it it's wonderful, like they do give you that kind of, um,
companionship and just like, unconditional love
in a way, I felt that in the nursery with the kids that I taught, like
they just love you for who you are. They don't
give a crap about all the other stuff that adults do, you know,
like they don't have any of that baggage in their brain,
which is why I loved it. Um, And it
it's, um, in a way. Helping with research is like a way I can still
use that part of my teacher brain by helping teach others about pain.
Um, which I
I think keeps me going
because it's, um
you need something. Otherwise the days kind of stretch out,
especially when it comes to pain.
Um
oh, God. My injection site is a bit annoying,
but, um
oh, it's because I've had to self inject a long time.
And they gave me these new injection pins
and they're a bit thinner
and I'm just like,
Are they trying to make them harder for people with with gummy hands?
Like I, I feel like they are,
because they gave me a different injection one time that you had to twist
to unlock and then press a button.
And I'm like, Seriously, you're asking me to do this with my hands
while I'm lying, trying to, like,
inject it into my tummy and it's like you're asking too much here like,
um so sometimes you feel like you screw up, but
injection sites always hurt. That's why I use.
I've got
many
ice packs, but I've also got these, which are awesome.
They're ice packs that fit your fingers.
I'll try and put it on so I can show you.
It fits on my finger for when my fingers are all swollen and sore,
and I was using my roller ice pack for the arthritis in my jaw.
Um, I do it before every video call so that I'm able to talk
right now I can feel heat coming off of my face.
Um, I even frightened my dentist one time because she was like,
there's too much heat.
Go away, Take some.
She wanted me to take anti inflammatories, and I was like, I've already taken them.
And she was like, No, you haven't.
And I was like, Yeah, I have, and I don't want to take more,
but they don't always understand why you don't want to take more.
You're like, Please don't make me like,
but yeah, um
I just thought I'd tell you that in case like
there was, like, students that wanted to know about
things that we used to help. Maybe. I don't know, but
yeah.
And how have you How have you have you just learnt these things from other people or
medical professionals? Have you just discovered found a way that works for you?
It's more just had to discover it by myself.
Um, medical professionals were very um this is what you have.
We'll give you a steroid shot. Off you go. Bye bye. You know,
but they wouldn't give me steroid shots many times because
I was so young and it affects fertility and things.
And now that I'm older, they don't care as much.
But, um, I still don't like getting them because they don't work for very long.
For me,
they work for, like, two weeks, even though they're meant to work for, like,
two months.
Um, so a lot of medical professionals, they don't think other than medication.
A lot of them
They tell you to go and ace it. But they don't tell you how you really go about it,
because I'm like, Oh, hot and cold helps.
And I'm like, What does that mean?
Well, the hot means like a bath or hot water with some maybe some
sauce, which I found not fantastic.
But also, I've got an ice pack that fits every aspect of my body.
I've even got a hip ice pack. It's like a
thing, you know, because it clips around my leg and it clips around my tummy,
and it goes around my house,
and it's fantastic.
Um,
but I had to find all that myself.
It's all trial and error or when you meet other people,
um, that are part of the gang that I like to say. Um,
you you tend to get wee tidbits from them. You know, like you learn things
like on the research called the other day.
I was talking to one of the other last season and she mentioned a side effect or
about fibromyalgia, and I was like, Oh my God, I've had fibro for ages.
I didn't know it That was that.
Like I I thought it was to do with one of my medications.
I didn't know it was a side effect of fibro.
It's hard to know what the culprit is,
and I'm sure you get that more than anything you're like Wait, what's causing? What?
I don't I don't understand.
And then you talk to other people and you're like, Oh, OK,
but sometimes it's not, You know,
you take it with a pinch of salt while other people's reactions,
because what works for one may not work for another,
because I started on the injections of of a new
version of the injections that I'm now back on,
and I and I start having seizures
and yet I know somebody that's on them and is that
is having a great time. Their pain is fantastic,
you know? So it's
I was unlucky.
Sometimes it's just a cocktail of med that's in your body
all the way up to your
all the way through your life up to that point.
And then you add in this new big drug, and then your body just says, Well,
that's enough and my body shut down.
And you know,
like I've seen it happen to other people on different
beds that I've been on and not had a reaction.
So sometimes you need to
take it with a pinch of salt, because sometimes there can be a bit of scaremongering,
which
is a bit scary.
When I joined our fight groups on Facebook, it was too frightening because
there was a lot of people older than me
that were seeing all these things. And I thought, Oh my God, that's my future.
Oh my God, Oh my God.
And you start freaking out and you've got that whole existential
dread going on.
I don't know if you get that, but I certainly do. Sometimes I dread
to exist
because I know if I'm bad now, it's
what am I going to be like?
Um, it's a big worry, Um, and and I don't want to have kids,
and I don't know if I'll be able to,
Um because my mum
had 10 miscarriages.
Me and my sister are the products of I V f.
Her only chance that ID f I might add. So it's a very a
slim window that that I even exist. So, um
and, um,
it was hard for my my twin sister to get pregnant. She's not got
half of the things wrong that I do. So it's, um it is a worry.
And yeah, I've got things like my partner's mom saying,
You know, uh, you gonna have a baby?
And I'm just like, Oh, it
it's
It's hard to even think about it when you've got pain, because it's a worry
about passing it on
as well. But for me especially,
um, I don't want
to see someone in pain. And it's my fault. In a way.
I know it's
it's not really my fault, but it's
it would. It would be hard, and I feel like that's why my mom can be in denial.
A lot of the time about my own pain
is because she can't
accept it.
It's too much.
Um,
and I don't know if my dad feels guilty about it because I get psoriasis from him.
And my arthritis is psoriatic arthritis.
So
it's connected to the skin condition.
Um, I do have pretty bad skin, even though a lot of people don't,
I I don't I don't look it because I moisturise a lot.
Um,
and it's taken a long time for me to get to the point where
I was getting bullied for it on my face and things. And,
um, it was it was hard because then the pain started as well, and
I There was a lot of things that I didn't know what was going on.
And
you know what I was told when I was really young that I had the markers for arthritis in
my blood
and I when I was eight, I was like, Oh, can you take them out of my blood?
And they were like, No,
and and and I was like, Why did you even tell me?
But I think what they meant was the markers that I could
trigger a disease. I think they know that you have these markers
that certain conditions need to be met for you to actually trigger the disease.
And when I broke my ankle and
I jumped off a wall that size
landed my ankle underneath me
and
my dad
dragged me up and was like, We're walking home
and got me to walk home
And
my mum took one look at me and when we got in the door and was like,
We're going to the hospital,
she used to be a nurse. Um, years before she got cancer.
Um
so, like she was like, No, it's it's bad. So
that's what triggered
arthritis, But it took a long time,
and for them to even
took over six years.
So I'm hoping,
hoping that by using these videos,
my other hope is to actually shorten the waiting time and
I don't know, like, make it a bit
a bit easier. I guess
I was left high and dry by a lot of people walking out with appointments,
not knowing exactly what had happened.
And I didn't have anyone with me
and I was
young, and
I think that's why I went into denial
and I just refused to see any doctors for like, nine months. I was ignoring them all.
I was
I was young. I was 18 and
I left school by the time they finally diagnosed me
and that screwed up my exams and things.
So I was angry and and annoyed at the world,
and and they gave me no help
with any of that.
Even though I've been going through procedures for a long time
to try and figure it out for ages.
I remember they hooked me up to this thing and gave me electric shocks
to try and figure out if I if I
induction kind of a condition,
I was so young and I didn't know what they were doing.
As far as I was aware, they were just torturing me
for an hour.
You know,
um,
I want them to try and
talk a bit more kids to make them a bit more informed.
Yeah, it can scare them. But even if you dumb it down
as long as they know something they can hang on to
I just remember feeling scared a lot of the time because I
didn't know what was wrong with me or if I was gonna
nearly die like my mum because she's nearly died so many times throughout my life.
Um, she's had, like,
operations, um, cancer twice. And,
you know, like
more than half our veel removed and things. So like it's
medical stuff runs in my family. So I think growing up and
finding my mom one time when she wasn't breathing
and having to phone an ambulance when I was young
and the doctor told me that if I hadn't done that, then she wouldn't be here,
and I think he thought
that he was doing a good thing.
But
I started going in and checking on her, making sure she was breathing
every night and things and like
it. It was such a muddy,
you know, that we would lie in bed with her sometimes and like only get kicked out.
My dad wanted to go to bed.
Um,
so it
it gave this kind of anxiety that I had to look after her
and I didn't want to look after myself.
Um, and even now when I'm having a bad day, I'll still try to help look after her,
because I see myself as not as bad as her.
When really I started getting worse,
as
like as I'm getting older, so now
it's starting to show a bit more,
so people are a bit more accepting because there are physical
manifestations. I thought
some have moved out of alignment of
things.
I don't know if you can see that
I can. Yeah,
when you have something that's obvious and it's it's not meant to be like
that and it should sit up here and the pain is just always there
in that joint. And that's the hand, right with,
um, and it's the hand I use everything for.
So it impedes every single aspect of my life, you know, and I can't open a door.
I can't do
simple things.
And when stuff like that starts happening, that's when you get a bit more accepted
because when I was young and they couldn't see it,
I was forced to keep going until I dropped
sometimes
until I fainted because there was too much pain
because
I just had to, because
people couldn't see the condition,
whereas now I'm older and like I don't care. You can't make me do anything like
it's
different.
I had no confidence whatsoever and I was pulled fat by everybody,
including doctors.
Even though I'd been a dancer For years
I competed as a dancer and and, um, I was quite fit.
So
it was hard on me to then not be able to do things that I'd always been able to do. I
used to climb trees and stuff,
which my dad hated it. Like we turn around and be up a tree. Like what?
I still look at trees sometimes and plan how I would climb them. But I know I can't.
I like looking at them going.
I would climb there and there and then there and then there,
and then you're like, but I won't.
Sorry.
I chatting too much.
No, it it's just Thank you. No, not at all.
I was just here to listen and thank you for sharing
your story with me.
Um,
do you have any questions for me?
Um,
well, I just find it fascinating, you know, like how you got into this movie and like,
um,
did you tell your story and then get into it,
or did you just kind of get into it randomly?
And I'm curious because, like, I fancy getting into eventually, so I'm just like
I was invited to share my story. Um
about living with,
uh, getting support from social care,
shared my story and then
never really thought much about it at all. Um,
and then
they said, Oh, like now you've shared your story, you can
become a community reporter. You could do this train, does that.
I'm gonna go on the training, But I'm never gonna use it because
I didn't think I was ever able to I'd have the energy and
the time or be in a good space. So I did the training, um
And then I captured one story,
and then they asked me to work with them on a a
few more stories and it just and now I
employed by the organisation.
So I had this, like, really mad journey of being sharing my story,
capturing people's stories,
never intending to
do anything other than share my story.
And I was a bit like, Oh, I'm not really sure that I want to share my story, but I did.
And then I captured some people's stories and did the training.
And now I'm employed by the organisation, which is
completely
That's amazing, because I I was curious, you know, because
I was like hearing other people's stories. I think that
I I I don't want it to seem like it's intrusive or nosy,
but I just I find it fascinating because I I
I love to read some books
growing up, and I used to get lost in other stories.
So I I find it fascinating to hear others, um, in their perspective
because I always learn from it.
Um
and I don't know if that's the teacher in me, but I find it really cool.
And I just had a feeling that you might have gone through a journey. I don't know.
I just was curious.
Yeah, definitely.
And, um,
I'm sure, And and I will, Yeah, I will tell you that
that that the stories Because I think sometimes like
the things that we've you've spoken about today,
it can be really easy to detach them from a person.
It, you know, and stories keep them very human.
They're all very different.
They have different experiences,
different things that we can learn from different opportunities to learn.
So that's why I love stories, because
they just keep it real. Um, and even though
it can be really painful, and even though
you know people can get upset or,
you know,
I I think people want to share their story because they wanna make a difference.
Like you. You wanna make a difference? Hence why you're sharing a story.
So, yeah. I mean, I think we will continue to
collect and develop these stories, particularly for capes.
It's really cool. Like I did. Do they have a specific plan of, like, showing them
or what we be told when they're gonna be shown? Or is there like, a protocol?
I'm just curious.
So we're gonna be inviting people if we want to share their
story to come back and look at some of your stories,
Some other people stories.
And what we do is we look at what are the key messages and themes.
Um, are there any, um, ambiguities or areas that are, like, surprise us?
But what are the key
experiences that are coming out?
How can we use those experiences to to make change and they're the reason for change.
So
I think you touched it earlier. Like,
I think if a medical professional heard your story,
then it might help them with their training and practise.
I think sometimes a lot of people don't hear these stories.
I know it's it it it can like.
People can take their health for granted until it's not, you know, and
I think a lot of medical professionals, some of the nicest ones I've ever met,
and that's not I'm not generalised in all of them.
But there was this one lovely woman and I woke up
in pain in the middle of the night in hospital,
and they're not really willing to give you food and things during the night.
But I wanted to take some painkillers
and I was like, I need something to take with it. Otherwise I'll be sick
and And she went away and got me some cake
and I could have kissed this woman
because I was because she was like, I think you needed some cake and I was like, Oh, oh,
my God, like it's just when someone does something.
It's like she was like my sister's got pain
and she just, like, cuddled me and then walked away and I was like, Oh,
and it's I don't want people to have gone through hardship
to understand me,
but it's often those people that have gone through hardship that do,
and
I feel sad for it. But at the same time, I feel grateful for it for myself,
you know? But it's it's sad that that those are the people that we connect with
that have gone through. So
sometimes that's that's the way of it, and you're just challenged a lot. But
it's been wonderful to be able to kind of get it out
to you. I mean, I actually had no plan. I had some notes,
but I just thought,
I'll have no plan. I'll just like, talk to me
like we're chatting and just kind of let what comes out
kind of come out
what my brain wants to talk about and things, um,
and I think I managed to cover,
you know, a few things.
At least I wanted to anyway, especially because I feel like one of the points was
that I was always too young to be sick.
Um, and that's something that people think
people are older, especially with arthritis
and all my granny's got that or whatnot.
Um, and that was one that I wanted to highlight was that
there's an offsite end of the spectrum
of like, younger people, Um
and and I I remember talking to someone who was like a nurse.
And she said that she felt like
she didn't know what was worse.
The fact that she'd had her career and got arthritis later in life
or
me
that had gotten it so young and didn't have a career
like she felt like it was worse for me
because I it stopped my whole life and it's dragged.
Um, and I feel like
if I'd had some support,
then it might not have gone down in such a burning flames as it did, you know, And
when you're alone, you tend to isolate even more, and when you don't know what to do,
it's
it's hard and pain just kind of frazzles your brain in that respect.
Um,
but it's been
it's been really cool, though. Um, I don't think the people's voice, because
it
is wonderful, totally hadn't heard of,
um, the work before, you know, and that's why I love research. I think I
I get to learn and meet so many awesome people. It's pretty cool.
Um,
so
I'm hoping that, um, I wasn't some sort of rambling mess
because
was amazing. The one that you showed
us off. She was so amazing and calm and collected. And I'm just like a crying mess.
And we take bits from all the different stories. So
I will send you the concept form again. Um,
And what will?
What will happen next is that we will come together to look at some of the stories,
and we're working out what we want to do with the stories for Kate.
So
and you'll be part of that. And you'll continue to be part of that.
So thank you so much.
Um, shall I stop the recording there?
Uh, yeah, that's
that's
right.
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