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

Please Report the Errrors?

Can I get you to introduce yourself, please?

My name is Eleanor. September.

I'm a young woman of over 60.

Thank you, Elena.

Eleanor, what's important to you? What are you passionate about?

What do you like doing?

Oh,

I very much love alternative therapies and meditation healing anything

to do with the alternative lifestyle is my passion and music

dancing, which I can't do anymore, but love it anyway.

And arts, I think that's my passion.

But I love supporting people of any

sort of under recognised people in the world.

All age disabilities, et cetera, et cetera.

Thank you.

So,

what?

So what role does pain play in your life?

Oh, God, no, I don't.

I wasn't prepared for that question just as yet.

Well, um I live with 24 hour pain.

Um,

very much misunderstood condition, I think, Um,

from the time I started complaining, I was only about 39 at the time,

and

the onset of it was quite dramatic and severe for me.

But when I did actually approach the

professionals or the doctors or hospital appointments,

I was referred to cognitive therapy behaviour and my GP and and got

fed up with me coming in and out of the surgery with a string

visiting place and

referred me to, um

the rheumatic, uh,

specialist

Ah, God, orthopaedics. I've done it all. I've

all avenues

and I'm still to this day I'm still suffering.

So pain is very much a subject where people see you thinking and talking to you and

you're trying to be as normal as possible with whatever is going on in your life.

There is a disbelief about pain or misunderstood

quantity

in that element of pain because

you may pre present

very well because you've taken an overdose to to for that occasion,

whatever the occasion is.

But that overdose doesn't last you

a lifetime if every single hour counts because

whatever you put in effort wise that day,

it means the next day is cancelled out.

So pain is quite debilitating,

and it's very hard not to focus on it when you're experiencing it.

24 hours.

What other things has pain

impacted on your life?

Oh,

accessing

the everyday necessary things like going shopping and

meeting people and being carefree. Because, of course, the carefree

comes with being able to do things with my daughter

being able to decide on a spur of the moment to change my day,

whichever way I wanted to.

If there was some invitation coming up that wasn't planned, I could do

everything.

Seems to be completely upside down in my life because it's

all dependent on how the pain is managed for that day or

ongoing.

You talked about the impact that pain has on you what it has on your life

when you've been get looking for help and guidance,

particularly around medical help and guidance.

How has that been? And and and what

has worked and what hasn't worked?

I think from the onset

the, um approach to the management of my pain has been completely new

because everything I've had to

source has been my own research

to find out more from the symptoms that I was experiencing.

It took from,

oh,

the age of 39.

Um, till I was about, I think,

bordering on 50

before I got diagnosed,

and by then there were other conditions actually surfacing to

show that this was more complex than it presented.

And then once you have more than one or two

or three people looking at you in all in silos.

It's very hard to put it in

to a managed package for yourself.

Too much information, misinformation and no direction and no support because

no one wanted to take the responsibility of this one diagnosis,

which was misunderstood.

Really.

Um, I think fibromyalgia has come up,

and because of the stars that are now advertising,

it has been people who suffer from it.

People like myself who've been suffering for over almost 30 30 40 years. Now

it hasn't

made that much of a difference in the day to day management of it. To be honest,

up to this point where mine is combined with arthritic, uh,

degenerative condition as well,

that sounds really difficult and challenging what

could have been done differently.

I think just being believed,

um,

in the sense that

there were days when

you were

presenting us very well on the surface. But

having woken up or not slept all night

preparing yourself for the appointment,

whether it's at the hospital or the GP in the morning,

having to set a clock up in the morning to

actually do exercises to enable you to get off the bed

and coordinating your thoughts, which is very much what now?

They've named very fashion. Believe Brain fork.

I didn't know what it was called, but anyway

couldn't connect the dots, didn't know what day it was.

Didn't know what I needed to literally get myself

motivated enough to understand what day it was.

Never mind anything else, but also who's gonna support me that day

and because as much as I wanted to have that appointment attended to,

I still needed to make the practical steps of getting there,

which involved me getting up at three o'clock in the morning,

making sure I sat in a bath of hot water

to try and get my limbs trying to at least

talk to each other to be able to move accordingly.

And then, by that time, then

the medication at the time that I was self medicating and everything else

because I didn't have anything that covered the pain I was experiencing.

So those kind of things are really not

highlighted because

there is a misunderstanding of each individual

has got a different threshold of pain.

I understand that,

but there's a general, uh,

sort of we give you mind altering things to give you when you've got a caring role,

you can't take mind altering drugs.

You have to try and keep a little bit alert

in order to manage the caring role.

So therefore, I had the choice between that or the mind altering drugs,

which actually didn't help the pain.

To be honest

and then keep on getting them thrown at my face because I refused them.

They coming up on my records as being somebody who's refused treatment.

It's not the case.

No one actually dug deep enough to find out what my life content was

that you just can't prescribe me something and expect me to take it.

And if I just tell you it doesn't work, it doesn't suit my lifestyle.

You then dismiss me as somebody who's being completely uncooperative. You know

what impact has this had on

your mental health?

Um, I don't consider myself a depressed person, but I guarantee you I cry most days,

and

just because that tear doesn't mean I'm depressed, it means I'm in pain.

It's misunderstood that depression

is a lovely label.

It doesn't quantify where I'm at because I try and do as much as I can

to support myself with other things.

And I don't think

I can

truthfully say to you, there's been a day when I haven't cried.

That sounds really difficult. And I'm sorry, that's your experience.

So I wanted us to step back a little bit.

So you've talked about this being a very long journey

is the

anything that so

pain and the kind of psychological side of that,

you know, what's the your history around pain and kind of how is how have you got

here? How did it start?

um, at the beginning of the,

um I thought or I felt that it may have been because

I was I had a traumatic experience and when my daughter was born

and I figured that may have triggered the

actually underlying pain that I was experiencing,

but it was magnified at that point.

And it just escalated from then and

also because of the fact that I wasn't sure whether my body was actually

developing something else.

It because I'd lived with it anyway, quietly since my teens.

It was hard to then identify that trauma would have

brought this to this extent for me to now,

experience not being able to get off the bed,

not being able to think a throat,

not be able to sleep and actually not be able to describe the pain, which

it was just all over my body.

So how do you describe something that's all over your

body to someone who has never had that experience?

Or maybe thinks that is your malingerer,

which is a beautiful term that's on my files as we speak.

And, um,

that alone was hurtful because then it it impeded my progress because I was

then reluctant to express my pain because it was giving me another label,

which I didn't want to live by.

So this really does make me think about it. So

you talked about

already experiencing pain at a young age, But then

when you had your daughter,

that was another point where things got more challenging.

So has trauma been a part of this journey? And

hm,

I think so. I think

it continues to be,

um,

because it creates a certain level of stress that one has to manage internally. That

sometimes doesn't manifest itself,

but only manifests itself in the pain that you experience from the fibromyalgia.

And that Somehow that container is overflowing all the time.

It keeps on getting topped up with another bit of stress,

whether it comes from people that actually

do not understand what you're going through,

or maybe even the people that are supporting you or meant to support you.

Not supporting you.

Um,

thinking about today

and your long journey with pain.

you don't deal with the early childhood trauma

and you deal with the pain today like, can you separate

the trauma from in my head?

I'm wondering, Can you separate that early childhood trauma

the other bits of trauma

to kind of

the physical symptoms like, Can you separate that if you don't deal with

what a difficult one?

I don't think it's a it's a possibility, because at that young age,

when I first had the experience of pain,

you, you you can have all the tools in your head or ideas in your head what it could be.

You always put it down to the practical things.

Oh, today I played basketball,

so maybe that's why I'm feeling I'm feeling a bit stiff,

and that's why I'm feeling a bit of pain, so you justify the pain and just go think Oh,

it's OK, Tomorrow will be OK.

So from that level, I don't think you are in that position

when you're experiencing pain, to actually separate

the point of pain when it began and all of those things without noticing a pattern

growing. Or maybe then you can say That's my trigger point.

If I do this, this is what happens.

You don't get that kind of knowledge till you

are in that situation for a period of time.

So now that I'm at this age, I suppose it's made much more glaringly obvious

where and how Maybe

this exacerbated to this point

and looking back over your journey.

Um,

do you

like I have you found the the space to deal

with that stuff that happened in those early days?

There is no opportunity for that. Life happens and

you don't choose to have a AAA child like I've got at the moment,

who's born premature and all the rest of the trauma that comes with that

and also have to dig for research and and all

the things you can read up about a condition that you

don't understand in the first place and then still manage to

attend your own appointments to be able to manage yourself.

And it's a lot. It just

you have to give something up

and I, you know, obviously without any choices being given to you,

you do the best you can with the tools you've been given

and thinking about today in your life. How do you manage on a daily basis, like, How

have you navigated getting what's

you needed as someone living with long term chronic pain

with great difficulty? I because

I think

the most telling thing is that

when I'm unwell, it impacts on my on my, uh, child.

And that impact is not only on one level,

because she's then seeing my discomfort and the

distress and

not understanding what she can possibly help to support me.

And then because of that, me trying to shield her as well from seeing

the three o'clock pain,

tears and the three o'clock alarm calls to try and move

my body to try and get ready for the day.

All of those things somehow compound

this reaction that I would have had if I had had

the tools to cope a bit better because suppression hasn't helped

because the suppression of that pain trying to live as normal a

life as possible because the stigma attached to not being able to

do a thing on a daily basis not to be answerable on

a daily basis not to be visible on a daily basis because,

of course, visibility.

What matters?

It's not because you choose to be invisible

that suddenly you're not anywhere to be found.

There must be some reason for that. But no one gives you the platform to actually say

I'm struggling here.

The reason you're not seeing me visibly is because

I do not want you to see me incapacitated.

I don't want you to see me failing because

again labels you're failing to manage your life.

It's not about failing, it's pain

and that

have there been times that

you've felt

that things could have been done differently?

I do.

I do. I mean,

I remember the day I actually got the diagnosis. I had three diagnoses in one day,

and on that day

I left the appointment with three different sets of leaflets

that I had to plough through and try and understand,

which were way above my pay grade.

I did not have

insight or even an insight as to the Signposting.

Those leaflet would bring me forward

support groups, all of those things I joined.

And to be blunt and honest with you, those things are only if well managed, helpful.

I do not advocate signposting somebody who's just

been diagnosed with something to a support group

without any indication what the content of the

support group will bring forth for them.

You can support me in many, many ways.

But first of all, clear explanation of the condition will be the first point of call.

Not assume that now you've given me a tag

I'm now understanding.

I don't understand. It's just a name.

Take the time to explain what this may bring, so I can then maybe be guided

to manage it better.

And when you

get help and you said that you've got other things going on,

health things when you like,

share that you've got this pain condition, do you think people

take it seriously? Do you think people work with you to look at you as

the whole or how how are you getting the

support for all the other things along with living with

chronic long term pain.

I don't think I get it. I just seem to manage it myself in in many, many ways.

It's seeking out the environment that makes my peace of mind

and understanding of my pain for that day co manageable meditation

or maybe being able to listen to beautiful music,

things that will calm my nervous system down enough in order

to be able to have a day of some sort.

Tell me about medication and your challenges.

You've had to medication because I know we spoke

about this just before we started the call.

Medication has been a troubling thing because

when you're given one drug and then you're meant to

hold on to that drug for over how many years

without the side effects being taken into

consideration because I've prescribed you this drug,

you can take it.

And that's the end of the story. You're out of pain.

Some of us don't have the Constitution that can

manage some of these drugs that we've been prescribed

and maybe can't even metabolise them properly in

our systems because of other things going on.

So the blanket cover that because you've got it on your prescription.

It works is very much a foolhardy way of dealing with pain,

but also when you get to a point where the system is not geared

for able to change your medication, when it reaches a point where it doesn't,

it's not effective.

You know all the process around all of that.

Asking for that to be looked at is just

another nightmare that you have to go through again,

creating another point of stress, which then brings on the pain.

Then you just keep going. It's like a little wheel that goes round and round.

And it depends when you are lucky on the

lucky day that you get a consultant who is prepared

to explore the condition a bit better, Um, even even differently.

But there's a lack of a draw.

It's not something that's there.

So if you were that consultant,

W W

what

if you were gonna like to design a service or you

were gonna offer the best possible support to people like you?

What would that feeling look like?

I think first of all, I would explore

on a day to day those 24 hours of that person's

pain threshold and what they go through on a daily basis,

their life content.

What triggers And what were those triggers actually bring forward?

Do they bring forward in that?

Do they bring up,

you know, a little bit of depression?

Do they bring out a complete wanting to opt out of life? What do they bring?

There must be something that is a common denominator that we

can work with and start off with as a starting point.

Not just think. Well, you're in pain, so I'm gonna give you an aspirin. No.

Think what actually may have happened if you had asked

me when and how that pain materialised on that day.

Because every day is different

at the same time. If you maybe even ask me simple things, keep a diary.

What works for you? What sort of time of day does this work?

Which tablet actually affects? In what way?

If I give you this one, what do you do between those times?

Little things that are not really hard to do where we given the tools to do them.

I do them now purely because my life has been

so traumatic all the way through that I'm now learning

to have a diary for every single thing, every single thing to my experience now,

because it could be this.

It could be that

it's never one thing anymore.

But it's only because of my age that I've come to that conclusion.

But if I had been given that opportunity, I mean, c BT I mean,

when you don't believe what I'm telling you,

telling me to go to C BT, you know, seriously,

are you trying to say that I'm lying about my pain? What are you telling me?

And then you get into that room where again you're given

another set of exercises that you've actually been using all along.

To support yourself. It becomes a new thing. Why?

Because you've been referred and your six weeks is up. Then you go to this 16 weeks is

hello.

It is not. It's a continuum. Pain does not disappear because you sent me to C BT.

It still continues.

What? What kind of

So So

what kind of things do you think

would help you

to manage the pain? What things do you You know what things do you need now?

What things need to change for you

right now.

I think just the processes are so complex

and they're not helping me as an individual.

This referral system, the back going change it midstream.

I mean, we used to be able to directly deal with our consultants.

We can't now we have to go via the GP.

By the time the GPS got that referral, you've got another stumbling block.

You wait for the appointment to come through, then you don't get the appointment.

There's no point of calling any of it.

You can go around in circles and hopefully you get somewhere

in the end because you fell off the bloody circle.

But I'm not being swearing, I don't swear, but really,

it is very taxing on the body to be having constant reminder of

how inept you are made to feel less than as a human being.

And

why have you chosen to share your story?

And I know

you really wanted to share that.

The links between early childhood trauma was

something that people needed to deal with along with the pain. So what

is it that brought you to this space around wanting to share your story?

think it was purely because

the pain itself and my condition for its sake.

Then we had the isolation and the covid on top that came about.

But beyond that,

it was

the immune system itself that brought me to share this because

it actually underpins everything that has happened to me overall,

had my immune system be actually

considered along the way

when I have first complained about having experience

in this plane and how that would erode

down the line and bring me to where I am today and Mali,

I would have found alternative other ways that may have been easier for me to manage.

And then

on top of that,

because there is always this, uh, prescriptive mentality with resistance,

prevention sometimes is the best cure.

Because had I been given that advantage

to say, you know what?

Let's maybe start off with just seeing what you could do

to help yourself without any of these tablets and and sit

and see if that helps. Those things I understand are prevention is better than cure

because of all the medication and the things I've taken over the years.

I'm struggling now with other conditions, which probably

I wouldn't have had to struggle with had I been, you know,

given the opportunity to choose or even maybe had a conversation

with somebody who actually specialises in the arising symptoms I was experiencing

because, I mean, there's research done by every single

condition people have that nobody has all the answers. I'm not blaming anyone.

All I'm saying, let's have the dialogue

to actually try and not treat people on a blanket cover base

and label them and then leave them to get on with it.

And did you

When did you

start

understanding that

the trauma was the

And I'm gonna use the word that you you use the catalyst to this condition.

When did you

understand that the trauma was the catalyst to this condition?

And if you didn't deal with the trauma,

then all the other stuff couldn't be dealt with.

I think it was round about my

the latter part of my forties.

Uh, when I sort out, you know,

psychotherapy. I sort out,

you know, talking therapies to try and get me to understand why this

whole thing could get so exacerbated so quickly

and also why I felt that maybe

connecting the dots would help me understand what I was going through.

So the talking therapies at that time, even the psychotherapies at the time,

were so they were so dis differenter in approaching

and taking me away from the pain to actually visit

that place in my head where this may have come from

and that helped.

But that wasn't long lasting, of course,

because of situations and the system and whatever else.

when I saw it in a later stage of my life, it was dealt with it in a different way.

It it it then

if I was to apply for a job and having a label of having mental health was like a no no,

so it impeded that footing to be taken forward. I just thought, No, I won't get a job.

I won't get this then I'm not doing that.

But

it's a Catch 22 Really,

because it shouldn't be a problem whether you've got mental health or not to get a

job done because even if I got to wake up at three o'clock and do it,

I still can do a job.

But the judgement is, if you can't do it between nine and five, then you're not.

You're not used to anyone you know,

absolutely.

And thinking about

the

it has

has the way that people have treated you. Surprised you?

Yeah.

Horrified me at times.

Absolutely horrified me

Or what's wrong with you? Pull yourself together.

I mean,

who does that?

You know, at the end of the day, even if you haven't got empathy,

I'd rather you didn't say anything.

The judgement call that people make

because you choose to keep your condition to yourself. And you do not want it

to be a brother that they beat you up with every single time something goes wrong.

Or maybe it's because you're not thinking

clearly because now they know your condition.

They can blame you for everything that goes wrong. Do you know what I'm saying?

It's just

it's a mess.

You know,

people who have got experience of any condition

must not be judged because of the label,

because each of us are different

and some of us dig deeper than others. Some of us don't want to dig. It's too painful.

But, you know,

some of us are prepared to because we want to carry on and say to other people.

You know what? This doesn't define you

very powerful. Eleanor really, really powerful.

And it's definitely taking me on that journey around.

And I was really struck when we had our pre meeting

and went through the consent form and everything

when you said that

early experience

changed the way your brain functioned and the pain and was so real.

And then there's just a whole lifetime of people not believing

you and you not being able to get the right support.

Where's your life at at the Where are you in your life at the moment?

What's going on for you?

at the moment am

I'm experiencing quite a difficult time at the moment.

Not only is it difficult, it's hard to manage because

I'm having to choose between my health and day

to day expenses in order to get my health

in manageable state.

That pains me greatly considering I put into the system quite

a lot of years,

and now I'm having to pay for my health.

Everybody has to do it because of the NHS, whatever else, but nevertheless,

the pain of that

is translating to my day to day existence at the moment

because I'm deciding at this late stage to prioritise my life and be pay

at least manageable pain in my life to come back because

I can't go through the last 30 years that I've gone through with pain,

not experience, even one day without pain,

because I've got a a young lady who's expecting expecting something

because I'm the only person she has.

You know,

you can't expect other people to take over

what actually is not theirs,

because it she is my child and I'd like to enjoy her.

So I've taken this step to support myself and ask.

I might as well go fund me Page, I think at this point,

and to get some money to get my private

treatments done because I'm seeing every consultant I'm seeing.

I'm seeing privately of my own back.

That's where I'm at.

Thank you for sharing. That's really difficult. And not having that provision

National NHS provision just must be

so difficult, you know, like not everyone can be in your position.

It must be really difficult for you.

It saddens me. Really.

I don't think I'm unique. I'm sure that other people will do the same thing, but

it just saddens me that

with all the

work that we put in to make society work and creating the little communities that

we create in order to live a good life can be just literally like a

mat taken underneath your feet and whipped out.

And then suddenly you're no longer that person,

and you become this other person who's gonna make

a difference in a different way but also still willing to make a difference,

you know?

Thank you, Elena, for sharing your life with me. I know it's been difficult.

Um, I really appreciate this.

Is there anything else that you wanted to share with me about,

or have you got any messages for anyone out

there or anything else you wanted to share?

I think the only message I have is not to give up. Um,

keep fighting the fight and hoping for the best, because eventually,

somewhere someone will hear

someone will try and help you. Someone will actually consider you

and look at you with a different pair of eyes.

Thank you, Ellen. I'm gonna stop the recording now, if that's OK,

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Author

streetreporter

Post date

20/04/2023