Eleanor speaks about general daily challenges that she experiences with chronic pain. She also explains why there can be specific challenges with healthcare professionals, healthcare systems and medication.

CAPE and People’s Voice Media are working together on an important new project. 

The CAPE team is investigating whether exposure to adverse childhood experiences contributes to higher levels of chronic pain in the most deprived communities and the consequences of this. The interaction between the CAPE project, People’s Voice Media and the Community Reporter network will explore how lived experience stories can be used with the research.

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, um what? So what role does pain play in your life? Oh, God, no, I don't

I 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 of 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 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, so thinking about today and your long journey with pain

If 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 to 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? I 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. So 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? I 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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