Liz Sirrell has been living with intense chronic pain from Scoliosis, Trigeminal Neuralgia and a myriad of other chronic illnesses since she was 10.
In this podcast, she shares her life experiences with having to retire at 28 due to medical reasons, how art gave her her self-confidence and esteem back, learning to accept life with unpredictable chronic illness and her wish for more empathy in society.
I hope you enjoy listening to this episode, and you can also find the transcript below.
*Disclaimer: This article and the podcast are meant for educational purposes and are based on personal experiences. They are not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
Follow and listen to ‘Sick Lessons’ on your favourite audio platform(s) here: https://sicklessons.buzzsprout.com/
- When you find something that brings you joy, grab hold of it and flow with it. Appreciate the small things around you.
- Learn to listen to your body before it forces you to listen to its pain.
- Acceptance, like grief, isn’t a straightforward road. It goes backwards and forwards, but eventually you get there.
- Have more empathy for people, because you never know what they’re going through.
Transcript of Episode 3: Sick Lessons from Liz Sirrell on Acceptance & Having Empathy
Sheryl: Hi Liz, how are you today?
Liz: Hi Sheryl, I’m not too bad, thank you.
Sheryl: That’s great. Thank you for agreeing to join me on my podcast. It’s still really small and new.
Liz: You’re very welcome. Thank you for inviting me on.
Sheryl: Yes, okay. And let’s get into it. Can you introduce yourself briefly? Is there any hobbies, passions, stuff like that?
Liz: Been married to my husband for about 30 years. I live at the Scottish borders, out in the middle of nowhere. My nearest neighbour is three miles away, which I just love it. It’s peaceful. It’s lovely here.
Just my husband, myself and our dog. She’s not too peaceful. She’s a big pup still and goes a bit crazy at times.
Sheryl: What kind of dog is she?
Liz: She’s a Hungarian wire-haired vizsla.
Sheryl: I have a Shetland Sheepdog. Scottish.
Liz: She’s absolutely gorgeous and very, very lovable, really quite clingy.
Sheryl: Okay. They’re pretty good runners am I, right?
Liz: Yes, yes. She’s got lots of energy.
Sheryl: How do you keep up with that?
Liz: My husband would be the one who takes her out for walks and things like that. We’re out in the country, she can, you know, she’s got space to run around and she loves to cuddle.
She just loves to come in and cuddle you, which is really nice when you’re having a bad day, you’re not feeling too good and your dog just wants to sit beside you and cuddle into you. It makes you feel quite good.
Sheryl: I think with all that’s going on with a disability and everything, my dog provides me with the biggest comfort.
Liz: I always think that animals are quite perceptive. If you aren’t feeling well, they seem to know.
Sheryl: Mine’s not that perceptive. All he wants to do is play, basically.
And how do you find living so far away from… So remote, right? Like, do you get nervous?
Liz: I love it.
Sheryl: If you need medical help or something.
Liz: That would be the one disadvantage if there was an emergency, I think. But so far, touch wood, there’s nothing that’s happened like that. But as my nearest doctor surgery is like a 20-minute drive from here, which isn’t too bad.
Sheryl: Yeah, that’s not bad.
Liz: I’ve not had any emergencies or anything like that, that have, you know, caused a problem. But, you know, I love the peace and quiet. I look out the windows every single day, and I think how lucky I am to live here because it’s beautiful.
Sheryl: I think I’d live in some place like that, except if I had an emergency, what would I do? That would be the concern.
Yeah, cos it’s so convenient in Singapore. Like, you can call a taxi anytime you need, and you know, there’s food delivery at any hour, so, yeah…
Liz: No, we don’t get that.
Sheryl: Yeah, exactly. I’d trade it. I’d trade it for peace and quiet.
Liz: Yeah, it’s not everybody’s cup of tea living somewhere like this. You know, a lot of people would see it as a place for a holiday, but to live here all the time, nope, not everybody would like it. But no, I love it. My husband loves it. And so, we’re quite happy here.
Sheryl: You live with arthritis, Osteoporosis, Raynaud’s and Coeliac Disease, is that right?
Liz: And I have scoliosis which caused me to have back pain all my life, really. And I’ve got a facial pain condition called Trigeminal Neuralgia. Not a lot of people know about that but it’s supposedly one of the most painful conditions that is known to mankind.
Well, I was probably in my twenties, when it first started, but it wasn’t diagnosed until I was in my 40s.
I think that’s one of the reasons that I’m quite active on my blog, and I write a lot about it for the weirdness. Because I think people should not have to go through all the years, you know, of having pain like that and you know, nothing happens.
I went from doctors to dentists back and forward for years. Tell them the pain I had in my face, and nothing was ever done about it. Until finally, I got a new dentist, and this new dentist checked my teeth. And always they say, no there’s nothing wrong.
She said then, I think this is coming from a nerve in your face, and she sent me to the doctor and then eventually it was diagnosed with Trigeminal Neuralgia. Once you get a diagnosis, you can get the right treatment for it, which makes a difference.
Sheryl: What kind of treatments are there for it?
Liz: You’re treated with anticonvulsant medication, normally. Up until then, doctors were just giving me pain medication for it, which didn’t touch it at all.
And so finally I was able to get medication, but that’s a whole other story because you go through all these different medications until you can find something that actually helps.
Yeah, thankfully at the moment I’ve got medication, it’s a combination of different types of medication. It doesn’t take it away completely, but it makes it a bit more bearable to live with.
Sheryl: Yeah, I’m surprised that it’s not more easily diagnosed, because it’s not exactly very rare to have Trigeminal Neuralgia, I think. Stuff like Burning Mouth Syndrome and stuff like that as well.
I think maybe one problem is doctors are not working together with dentists and… you know…
Liz: That’s exactly right. That’s exactly right.
Sheryl: It’s a big problem in medicine at current.
Liz: Yeah, if they all just put their heads together maybe they’ll solve that faster.
Sheryl: Exactly. Because it’s kind of an overlap, right?
Sheryl: Yeah, so when did chronic illness start for you and which episode made the biggest impact on your life?
Liz: Well, I think if you go back to when I was 10 years old I developed scoliosis. And at that time the doctor who saw me then had said that it would never cause a problem. He got that wrong. He got that very wrong.
By the time I was in my mid-teens, the scoliosis had changed, it was affecting my pelvis and my ribcage, and I was starting to get back pain by then.
By the time I was in my mid-twenties, the back pain became unbearable and the muscles in my back went into spasm at one point. And I couldn’t move. I was off my work then for about eight months.
And I was determined I was going back to my work, and I did. I managed it, but I only got about another two years later and I had to call sick again, and by that time I watched for the NHS.
One of the bosses had called me at that point and said, take as much time and soothe your health. Which I knew it was the right thing for me, but at the same time I was only 28.
And it’s not really the thing that a 28 year old wants to do. But it was the right thing, Yeah, I think that was the biggest thing because back pain is so controlling.
Sheryl: Were you in a wheelchair at that point of time?
Liz: At that point of time, I was in my bed and I was hardly out my bed for about 6 months because the doctor at that time had said the muscles have get into such a spasm that all you should do is completely rest.
The only time you get up out of your bed is to go to the toilet. And that’s what I did, and you’ll understand how that feels.
Sheryl: Yeah, it’s terrible.
Liz: When I went back to my work it was just gradually getting worse again and I knew that if I had carried on any longer, the same thing would happen, and so I had to give up at that stage.
Sheryl: What kind of work did you use to do?
Liz: I was a clerical assistant in a health centre.
Sheryl: So pretty stressful as well.
Liz: It wasn’t really stressful, I actually enjoyed my work, but you’re kept busy. 9 – 5 every day. As I said, I enjoyed it but it was hard.
It was hard on my back, when I was in pain and patients coming in to see doctors, they looked at me when they come in, they went, “Oh, you look terrible. You look like you’re in a lot of pain.” And I was.
Sheryl: People working in this clinic… [It] doesn’t work.
Liz: No, I had to give up my work, which it doesn’t take away the pain automatically but it made it easier to cope with the pain. Because you know, I didn’t have to get up every morning and go to work.
It’s still hard, I mean, when you give up your work through ill health. It’s not just an income that you’re losing. There’s a whole lot of other things that go with your work.
A social life. You’re chatting to people every day and things like that. Self confidence. Your self-esteem, everything like that. So it’s hard. It takes a long time, I think, to sort of build all that back up.
I mean, I’m 56 now, and I think I’m starting to build it up now, so that’s how long it took.
Sheryl: And how did you build it all back up?
Liz: Very slowly.
Sheryl: Would you like to take us through the process? Like, milestones. How did you get there?
Liz: I went through a couple of years of doing virtually nothing. And I hardly left the house, really. So it was only like close family that we’re usually seeing.
And then, this is kind of strange really, I suppose. But one day, my husband and I went to an art exhibition in a local town. And it was just like local artists, amateur artists were there.
And I was looking at the paintings and I was saying, “Oh, they’re lovely. I wish I could paint.”
It’s just one of those things that you say, “I wish I could paint”.
And the art teacher was there and he heard me and he said, “If you want to learn to paint I could teach you”.
And I went, “You couldn’t teach me. I couldn’t possibly learn to paint, you know, I’ve never been artistic.”
And he says, “No, if you want to, come to my class”. And for some reason I put my name down for going to this class and it was kind of crazy, I suppose.
On the day I was going there, I can remember just standing outside the door thinking, “What am I doing here?”
You know, because I had no self-confidence, and I felt as though I had lost the ability to talk to people, you know, have normal conversations.
And I was standing there thinking, “I can’t do this. I can’t do this.”
I had such anxiety, but I went in. And it was the best thing I had ever done. Because I learned this new skill that I didn’t know I had, but apart from that I was able to start mixing with people again, chatting to people, and that class actually built up my self-confidence again, I think.
Because the art teacher he was absolutely brilliant because, you know, I I would be sad and saying, “Oh, I’m rubbish this. I’m terrible. I’m no good at this”.
And he would say, “You are. You’re doing great, you know, you need to start, you know, having a bit of self-confidence. Don’t knock yourself down all the time.”
And he was really really supportive and good at trying to build people up. I think that was the start of me just slowly and gradually building myself back up again.
Sheryl: Yeah, I think a good teacher or mentor really makes a big difference in someone’s life.
Liz: Yup. Yup. I think for the sake of my mental health, I think that really helped me at that time.
I had to give up the class eventually because it was too much for my back. You know, it was only one afternoon a week, but even at that, it was just getting too much for me and I had to give up.
Sheryl: I’ve seen your paintings, I think they’re beautiful.
Liz: Yeah, thank you very much.
Sheryl: And you mentioned in one of your blogs that you were sitting by the door and there was some art sale. They liked your painting best. You overheard it.
Liz: That’s right. Very first art exhibition. When I was at the class and I had put up some paintings into the exhibition, as a couple of women were walking out, one had said to the other, “My favourite painting in that whole hall was the one with the two black labradors”.
And that was my painting. I felt ecstatic because, you know, to have gone from no confidence, not being able to draw a straight line, even. Out of hundreds of paintings, somebody had chosen my painting as being their favourite, and that just made me feel…
I can’t even explain how good it made me feel that day. But yeah, it made a big difference. A big difference to me.
Sheryl: Yeah I think ironic thing about self-esteem and self-confidence is the more you do what you’re afraid of, the better you become at it.
Liz: That’s right. That’s right.
Sheryl: A paradoxical thing.
Liz: Sometimes just taking yourself out the comfort zone a wee bit. And just pushing yourself sometimes.
Sheryl: Yeah, but that’s also a tricky balance.
Liz: Yeah. It’s a very tricky balance because it’s easy to sit in the house and just think, “Oh, I can’t do this anymore. I can’t do this.”
Sometimes you just have to give yourself a push, but I think that takes time. It’s not something that…
Look if somebody’s new to living with a chronic illness, new to living with chronic pain, it’s not something that you can just jump into, you know. You have to go through a whole process, a period.
The person that you used to be. And that person sometimes doesn’t exist anymore. And I think you have to just go through the process and eventually try to find a new version of yourself. And sometimes that new version’s actually… You’re a pretty good person.
Sheryl: Think there’s anything left of you from a previous version?
Liz: I don’t know. I mean that’s quite hard because my pain has gone on for so long that I think it was all like a gradual process for me.
You know, some people are fine and healthy one day, and then the next day there’s something goes wrong, and so they have got a completely different old version.
But I think with me it was a very gradual process. And so I think I’ve just always been me. But I think you still… I still… I had to give up a lot.
You kind of give up a normal kind of life when the pain was starting to get worst. Things like giving up my work, couldn’t have children because of my back and different things like that.
But on the whole I think it was just a gradual process. There’s no dramatic change, if you know what I mean?
Sheryl: I know, I do. How old were you when you retired medically?
Liz: I was 28.
Sheryl: Was it difficult to retire at such a young age? How did you actually cope with that? To tell people you’re retired at 28?
Liz: That was the difficult part. As I said, I knew within myself that was the right thing to do and a doctor for the NHS authorised the early retirement.
He said to me, “I’ve got no doubt you could maybe go a few more months, build yourself back up and you may get back to work.”
He says, “But it wouldn’t last long. And then you’d be in the same position again.” And he was right.
And I knew that, but yet the hard part, I think was telling people because, you know, at a young age people, especially women, I think, they’ll ask, “What do you do for work? Do you have children?” That’s two questions.
And it was like. I don’t work. Now at this age, people don’t really ask things. But at that time they did. And I used to be embarrassed about that because, yeah, you know, it wasn’t my fault. I couldn’t help it.
But yeah, you just think, “What do they think of me?” Are they thinking that, “Oh she’s just lazy. She doesn’t want to work.”
And in reality of course I wanted to work. I wished I could have worked. I wished I could have had a normal kind of life, but I couldn’t. But yeah, I find that bit difficult. You know, when people asked you that question.
Sheryl: I just give a generic answer or I just don’t answer them, really.
Liz: It depends who is asking, I suppose. Because some people don’t deserve an answer, some people don’t need to know what’s going on.
Sheryl: And what’s the objective right? When they ask, “Are you working?”
Yeah, I could be working on anything. I could be working on a painting, right?
Liz: That’s right. Some people don’t need to know the truth. And that’s that.
Sheryl: They don’t need to know the whole picture because they wouldn’t understand, you know, like there’s no point if they’re just going to ask and then next thing is like, they go off for lunch and just forget about you in two seconds, right?
Liz: That’s right, that’s it. It means nothing to them anyway.
Sheryl: Exactly. Because I’m young, I look young, and I have like a walking frame at the moment, to walk a bit.
And I do get older people kind of like, stalking me behind and asking me like, “What’s wrong with your legs? Did you have a fall?”
And then I get so annoyed, so I take my phone and I start recording them and they run away.
Liz: That’s a good thing to do.
Sheryl: Because no matter how I shoo them away, they don’t want to go, right? But if I’m filming them, you know.
Liz: I did a blog post a couple of weeks ago about people saying “You look you look fine. You look well. You don’t look sick”.
One time, I was going on holiday and I was probably about 30 at the time. And at the airport, I was getting airport assistance and I had to go in this little electric buggy, and the woman was driving and she kept looking at me and saying, “What is it strong with you? You look too healthy to be in this buggy”.
And I thought, “Oh.” Part of me wanted to high five myself because I thought, “Well, I don’t want to look how I feel.”
I’m quite pleased to be looking healthy, but at the same time, it was just like, why do people just presume that if you look well, you are well? You can’t always see what somebody is living with.
Sheryl: For me, like now, I have been disabled for six months or so, like literally quite disabled. First two months I was in bed and I couldn’t even use the shower.
Liz: That must have been so difficult.
Sheryl: It was. It was very hard and yeah, most of time I look fine, right. If you ask me now, I think I’d prefer to look fine. So I’ve always wondered about that. I have my answer now. So hard just to lie in bed flat for months.
Liz: It must be.
Sheryl: Mentally painful. More than the physical, yeah.
Liz: And I think there’s an aspect of fear there as well. You know, are you’re going to get better. Like for you, are your knees going to actually recover you know, as they should.
The year before I was getting married, that my back went into spasm and I couldn’t move. And at that time that was my biggest fears, you know, what’s this going to be like, is this going to actually improve? Am I going to be able to you know, get back to normal again?
Sheryl: Did you discuss having kids, before or after the wedding with your husband?
Liz: Oh before it.
Sheryl: You mentioned that you wanted kids, right?
Liz: I wish that I could have had children but I knew even before I met my husband that that would probably never happen because the way my scoliosis has in my back, and living with the back pain the way it was, I thought, even if I could have got through a normal pregnancy, I don’t think I was fit and able enough to look after a child.
So to me it wouldn’t have been right to bring a child into the world, if I wasn’t able to take care of it. And my husband, I met Ian and he knew what my problems were and everything like that, and he was in agreement with that.
At times I feel guilty as well because I used to think, this isn’t fair putting him into this position, either. I was living with my back problems, but then somebody else also living with my back problems?
But he knew about them. He was happy to go on that journey with me and you know, he’s still here after 30 years so yeah.
Sheryl: There’s lots of ableism stories out there about, you know, people with disabled partners and people think that they’re doing them a big service or charity. You know what I mean? That’s a big issue in society, I think.
Liz: It is. It’s a very big issue. I can remember one time Ian and I were out somewhere, somebody who me and Ian used to know from years ago said to him, “Oh you’re such a good man to have married somebody with a disability.” Those weren’t the exact words but..
Sheryl: They said it in front of you?
Liz: Yeah, that’s what they were implying and I thought, I don’t like the way that’s being said because there was more to it than that.
I know that a lot of people find it difficult to have a relationship when they’ve got a disability, I guess I was lucky.
Sheryl: Like one of my ex-partners said, “As long as I’m enjoying your company, Yeah, who cares, right?”
So what are some other big life lessons you’ve learned from being chronically ill?
Liz: Ooh. I would say learning to listen to your body and not fight against it all the time. I used to try and act as though that there was nothing wrong, and I wanted to have a normal kind of life and you’re just constantly fighting against the pain and it didn’t work.
Sheryl: How do you define normal?
Liz: Just do what normal people do. No, yeah I’m normal. So that’s the wrong way to put it.
Sheryl: Nobody’s normal, though.
Liz: Like other people my age, were maybe like going shopping all day. Those kinda things. Yeah, and I couldn’t. I think I used to try to do these kind of things and then it just ended up in…
I was in agony and there was times where I fainted in shops and things like that because the pain had just got so much.
And you know, it was like my body was saying, “Okay, if you’re not going to stop, I’m going to make you stop.” And that’s how it happened.
But I was in hospital at one point and a doctor had wanted me to get physiotherapy as an inpatient. So it would be more intense but that didn’t happen. I didn’t get any physiotherapy.
But there was a woman in the ward and she was talking to me one day, and she had arthritis and she said, “I’m never going to let this beat me though. I’ll always do what I’m going to do. I’ll fight against this. I will never let it beat me.”
And I think that was a lightbulb moment for me, because I realised that’s exactly what I have been doing. And I think it made me realise that it doesn’t work like that.
Sheryl: How old was that woman?
Liz: She was probably in her 50s. But at that same, I would be about 30, and I realised then that it doesn’t work like that and I think from then on I tried to, right, you need to listen to what the pain is saying and try and pace yourself, and when your pain starts to talk to you and say, “You need go and sit down”. That’s when you should go and sit down.
Because if you ignore the voice, the voice gets louder and then it gets harder. You know every time you do that it gets harder to recover from it and so I realised it. No you need to change the way you’re working it.
And the thing was, I think when you’re fighting against your pain is, pain is your own. It’s part of you. When I was fighting, I was fighting against myself, really. It never works. It takes a lot of energy to fight against yourself and you don’t have a lot of energy.
Sheryl: There’s no point, really.
Liz: So I would see that that’s the biggest lesson that I would ever give to people is to try to listen to your body.
As much as you want to try to keep on going, sometimes you just have to stop and listen to it and say, “Right, okay.”
Sheryl: I think you make a good point. I mean, it’s kind of like a curse to get chronically ill when you’re young. But you also learn this important life lesson of acceptance.
Liz: Yup, that’s right.
Sheryl: Which when you grow older, say you’re in your 50s, 60s, it’s really hard to learn, I think. It must be harder to learn when you’re older.
Liz: Yeah, because you’ve had this life of doing things. Exactly. And then suddenly that changes and it must be so much more difficult.
Sheryl: Maybe they go like, I’ve raised five kids alone as a single mum, something like this is not happening to me. I’m not going to ask for help, I don’t think I should do that. Or something like that.
Because the people in hospital around me are usually older people, right. Yeah, and I hear them arguing with the nurses all the time. I don’t want to take painkillers. I don’t need it.
Liz: That’s right.
Sheryl: And on and on and I’m like, just make your life easier, it’s not worth it.
Liz: I know. There’s no point in trying to fight it all the time.
Sheryl: It’s not worth the pain. I think it’s the kind of wisdom you can only learn, or it’s harder to learn as and when you’re older.
Liz: I think it’s also something that people have to learn it for themselves.
Sheryl: Yeah. People think asking for help is difficult.Is a burden. It makes you weak.
Liz: That’s right.
Sheryl: I mean, this is one of my favourite quotes that says, “Asking for help is not giving up. It’s choosing not to give up”. Something like that.
Because I mean, if you can’t go on, you need help. Then you just ask for it, because we all have different lots in life, right?
Liz: That’s right.
Sheryl: And what we can give, we give. What we can take, we take.
Liz: Yeah I think the acceptance part is difficult for people, and I think what they feel is if they accept what they’re dealing with, it is sort of just giving up, and it’s not, it’s not giving up at all. You know, it’s doing what’s best for themselves.
But no, it’s not easy and I think in some ways it’s easier for me because I’ve been dealing with it for so long. It’s been a gradual process to the stage where, you know, you’re getting worst, you’re getting worst.
Sheryl: It’s a painful process. You need to be in so much pain until you break down, like, hit a wall before I finally realised like, there was no other way to go about this, right? And now it’s much better because I’ve learned to accept it, in a sense.
And like I mentioned in a recent blog post, giving up there’s a sense of defeat, whereas acceptance there’s a sense of liberation.
Liz: It’s a more positive action, I think. There’s like a route forward.
Sheryl: Yeah, because it’s like, all that energy channeled towards fighting your illness, you can channel that same energy to doing something good for yourself. It’s hard, though. I still struggle with it, even though I really believe in it. Yeah.
Liz: So I’m 56 now and I still struggle at times with it. I went through a really bad spell last year and I had like sciatica, and I had a broken rib but it was a lot of things on top of my normal pain.
And I think last year, I just went through one thing after another and I got to a stage I thought, this isn’t fair, this just isn’t fair. And I wasn’t coping with it at all.
And I had to speak to my doctor about it and part of it was this mentality we have, but this is ridiculous. I’ve been dealing with this for four decades, and suddenly I’m at the stage of saying, I’m not coping with this.
But I think that’s also important for people to know that it’s not a straightforward road that you accept it, and then everything’s all good after that, because it’s not. The road of acceptance is still a bumpy journey.
And you can twist back the way, you know, you go backwards and forwards quite a lot. You know, it’s not just all straightforward.
Sheryl: Yeah, like the grieving process, it’s up and down.
Liz: It is. It’s very same. I think that’s part of our job as chronic illness bloggers as well is to explain that to people that you’re not failing.
You suddenly hit a blank wall at one stage. And you feel as though, what’s happened to you, yesterday I was coping fine. Today I’m not.
It’s totally normal to feel like that at times. And you have to, find a way forward again. And you get there.
Sheryl: Pushing through the pain. I think that’s one of the painful things you learn the hard way when you’re young.
I’ve left my own birthday party because of pain. And I was trying to push myself so hard I think I landed up in the A&E. I just want to have some fun, right?
I mean, it wasn’t even very strenuous or anything. I just thought it was worth it to push it for one day, but I couldn’t even do that.
Liz: Yeah. No. No.
Sheryl: You really need to learn how to listen to your body when you’re ill and really cut it before it even hits.
Liz: Before it gets to that stage. I’ve written a post on my blog one time about trying to pace yourself. I think I said, you know, if you think you can manage to do something for like 30 minutes, set an alarm clock for 25 minutes.
Liz: So you’re stopping before you get exhausted.
Sheryl: Like my todo list every day is kind of like, I don’t even bother to organise it for tomorrow until I wake up and then I’m like, okay, how much energy do I have?
Liz: How am I feeling today, because every day is completely different.
Sheryl: Exactly, and then after I finish the main tasks, I rearrange it again because I’m like, you know, I don’t know how much energy I’ll have after lunch.
Liz: I think that’s also the hard part of living with chronic illnesses, that unpredictability, because everything changes.
You know, even some mornings you get up and you’re thinking, Oh, I’m having not too bad a day today, so I’ll do this, that and whatever else. But then after you’ve done the first thing that sure has changed.
Sheryl: Right? And I think that’s one thing that healthy people… I’m kind of in awe of them because they can push themselves day and night, all year and weekends, I don’t know, like, I don’t know how they do it without…
I’m like, I’m like asking them, “Won’t you be in pain after that?”
Like how is it you’re not in pain, right? And I mean, I have my boss. I have my friends. They work hard and they have no choice. I mean, they have kids, they have their own businesses and stuff like that.
To us, we’re chronically ill. We know that when your body breaks down, you’re going to regret it, right? And it’s just not worth it.
But I think it’s something that people can only learn the hard way, because they’ve never experienced what it’s like to be in so much pain. And pain is not something you think about until you’re in pain, you know?
Liz: Mm hmm. Yup, that’s right.
Sheryl: I mean, even people that are in pain, after they, say if their condition improves, they start to forget about how much pain it was.
Liz: That’s right.
Sheryl: Yeah, because it’s like a human… I guess a defense mechanism of sorts, or I think we’d all not survive, right?
And I think it’s hard for people to comprehend the idea that someone can also be living with chronic pain for so long. There’s no magic answer to it. There’s no solution for it.
Sheryl: You have no choice.
Liz: Yeah, that’s exactly it. You’ve got no choice.
Sheryl: Or how you can be in pain and smiling, you know?
Liz: That’s right.
Sheryl: I mean, I’m in pain now, but I’m smiling.
Liz: Yeah, ah well, me too. And I would rather smile, I would rather smile. And I think I can remember, last year when I went through that bad spell, my husband tries to make me laugh.
Sheryl: Aww, that’s nice.
Liz: And I normally laugh. But last year when I went through that bad spell, I can remember one time I actually said to him, “Don’t make me laugh. I don’t want to laugh.”
Sheryl: I know the feeling.
Liz: And I think he was quite upset by it, but that was how I was feeling at that time. It was just like, I don’t want to laugh. I want to feel terrible, I want to feel depressed.
Sheryl: Actually, it’s not even that. Sometimes when I’m like trying to cheer myself up, I watch some like funny video, and I’m like, oh my god, it hurts to laugh, so I can’t even laugh. My body hurts.
Liz: I always have rib pain because of my back, and then occasionally, my ribs break. You know, I can turn the wrong way in bed and I got a broken rib.
Sheryl: Yep. Same as me, actually.
Liz: And so laughing really, really hurts so sometimes I could really kill my husband for trying to make me laugh.
Sheryl: But I think the best relationships are the ones that have humour though.
Liz: Yeah, I would totally agree with that. You have to be able to laugh through life. If you can’t laugh, it would be a half dead life.
Sheryl: When you’re chronically ill, you need a lot of humour, really.
Liz: Definitely. I think being able to laugh has helped me through. I don’t know what life would be like if I couldn’t laugh, put it that way.
Sheryl: Yeah I think for me I really enjoy morbid humour in a way because, say I’m in pain, and you know, or I’m dying, and you crack some stupid joke about that, it just kind of takes the power away for me, because I’m like, ha ha, that’s kind of like, It’s just a psychological thing for me.
How has all these new life lessons and experiences shaped your personality and outlook in life?
Do you think your identity has evolved because of chronic illness?
Liz: I think it probably has. It’s hard to see if what kind of person I would have been if I didn’t have all this going on.
I would hope I would have the same kind of empathy with people, but I don’t know if that would have been the case or not, because not everybody does have empathy. But uhm, I do have empathy and I’m quite patient as well.
Sheryl: Empathy for just people in pain, or all sorts of people?
Liz: I think all sorts of people, you know, people that have got problems, I think you can look at a situation and you don’t judge it in the same way as some people judge things. Maybe there’s a reason why somebody is feeling kind of down or grumpy or whatever.
Patience. I do have a lot of patience, I think, most of the time, not always. But I think that comes from, you just have to accept that you can’t get things done all the time. And so, you have to be patient. And I think that’s probably something that’s part of me because of [chronic illness].
I suppose the other thing is just appreciating all the small things around me, you know, because I can’t do so much. And so I like to look around me and I see things and appreciate the small things.
Sheryl: Do you ever get like depressive episodes where you can’t even appreciate the things around you?
Liz: Not really. Last year when I was feeling pretty down. Thankfully, that didn’t go on for too long, and I recognised how I was feeling at the time.
I spoke to my doctor about it. I think, just the act of speaking to the doctor, and saying those words out loud, “Im not coping”.
I think that helped me find myself because, you know, there’s only so long that you can put up with saying, “I’m okay. I’m okay. I’m coping with this”.
And I was lying to myself by doing that. And I think I actually helped me by being more open about it and telling people that I wasn’t coping.
Look, I live in the countryside. I absolutely love it. What I would love to do would be putting on a pair of walking boots and go and walk out in the hills. Take my dog out and do things like that. I can’t do that.
Well, I can look outside and see what’s round about me, and I just love what’s round about me. And I really appreciate all those things where, you know, I could sit here and I could get depressed because I can’t go out and I can’t walk, but there’s no point in that, you know.
So instead I’ll just look at what’s around me and I’ll enjoy it. And I think I’ve come to realise that you aim for what you can do, and don’t get depressed about what you can’t do.
That’s another life lesson, I suppose. But it’s hard. It’s not always easy, you know, because there are times when I would sit here and say, “Oh god, I wish that I could, have a day in the kitchen, baking and…”
Sheryl: Say if you were healthy, how would you live your life? Apart from, you know, hiking with the dog. What else would you do?
Liz: I don’t think it would be that much different probably.
Sheryl: So you’re a pretty simple person that knows how to really enjoy the little things in life.
Liz: I really am. You know, I think that’s true. This is the kind of life that I would have loved.
Sheryl: I think I can guess. I think you’d bring your painting tools up the hill and paint there.
Liz: Yes. That’s the one thing. And I would have loved to be an artist. Be a full-time artist, painting every day.
The irony to that is, that I would have never have gone to that art class, if I hadn’t given up my work because of my pain. You know, that would have never ever happened.
Sheryl: You never really know.
Liz: I would have been carrying on working. That’s true. That’s true. You don’t know what’s going to happen.
I suppose that’s a wee silver lining, you know, to have very dark clouds. That that’s something that I got out of.
I think if people can find something that they enjoy, I think you have to grab hold of it and just, you know, go with it and really enjoy it.
Because it’s easy to sit and look back at the past and wish that things were different, but it doesn’t work, you know, you can’t change the past. You can’t change how things are. So you have to try to just enjoy what you can.
Sheryl: How do you spend your days now on average? Like, what is your normal routine like? Is it like a lot pain in the morning?
Liz: I’ve got pain all the time, but…
Sheryl: Yeah I mean more pain.
Liz: …when I get up in the morning my pain isn’t good. First thing in the morning trying to like move about. I’m in a lot of pain, and every day is different, I suppose.
I’m at my computer normally in the mornings especially because I’ve got my laptop, and so I can sit back and let my body wake up normally.
And so that’s probably when I try to work at my blog or whatever. As the day goes on I might do some other things.
I keep saying I haven’t painted for a long time and I’m determined that this year I will get back to some painting and hopefully I will at some point, but I keep promising myself that and it’s not happened.
Sheryl: Don’t stress out over it, though.
Liz: No I don’t, I don’t put pressure on myself or anything like that, you know.
Sheryl: Yeah, otherwise it just defeats the purpose.
Liz: It ruins it.
Sheryl: Yeah I think that’s good because I have that problem, I tend to like, today I did 10 percent, tomorrow I need to increase it, you know. So that’s not so good.
Liz: No it’s not.
Sheryl: No, I’m still learning. It’s really really hard, yeah, for me.
Okay, and with that added knowledge you now have, what do you wish healthy people or society would do more of or stop doing?
Liz: Probably to have more empathy with people, and to stop judging people. Because I think that’s the biggest thing in society, that people judge. And it’s a horrible thing.
You know, if you’re on that other end, if you’re being judged, it’s a horrible, horrible feeling. I just wish that people would be different in that respect.
I don’t get it myself. I can’t say that it happens very often, because the people who I know understand my problems. But I know a lot of people deal with that a lot.
Like, if you’re looking at Facebook or if you see newspaper articles and you see the comments from people and they’re just so judgmental. They judge people’s looks, they judge, you know, it’s crazy and I hate that kind of attitude from people.
Sheryl: I think one of my biggest pet peeves online is people are so opinionated that they give their opinions before even reading the actual article.
Liz: That’s right.
Sheryl: I just think to myself like, you’re just making yourself sound stupid.
Liz: Just read it. Read it!
Sheryl: You’re making yourself sound ignorant because it’s mentioned in the article and you’re arguing against yourself basically, you know. That’s right. It’s like, read it!
You can’t tell everything from a headline only, which is kind of like us, right? You can’t tell, until you know the whole package.
Liz: And headlines are sometimes made to do that to people. You know, to make opinionated people say things.
Sheryl: They just love to have an opinion, I guess.
Yeah, okay. And so in closing, where can we find you online? Do you have a blog? Social media?
Liz: I’ve got my blog, Despite Pain. And I’m on social media on Facebook, Twitter, Instagram. It’s all under the same name – Despite Pain.
Look me up anywhere, anytime. That’s where I normally am.
Sheryl: I’ll add it into the show notes. And yeah, I really enjoy reading your blog. I just wanted to say that.
Liz: Thank you very much. I enjoy reading yours as well, Sheryl.
Sheryl: Thank you.
Liz: You always have really helpful posts for people.
Sheryl: So do you! That’s why I messaged you to have this interview.
Liz: Thank you.
Sheryl: Yeah you have some really good life lessons and stuff like that.
Liz: I really appreciated it, you asking, and I hope this comes across okay because I’ve been so nervous about it. I’ve never done anything like this before.
Sheryl: I knew you’d do great. I had no doubt, really. After the first five minutes, I think we forget we’re kind of on screen anymore.
Liz: Start chatting normally. I hope people can understand my Scottish accent.
Sheryl: There’ll be like captions, so it’ll be fine. I understand it so I’m sure people can. I love it.
Liz: Well, hopefully. Thank you.
Sheryl: I think it’s interesting because so far, I have like a Kiwi accent, a Scottish accent, a British accent. So I think it’s really interesting.
Liz: And then when I’m editing the videos, I keep having to hear the accent. So I get to like, learn what the differences are. It’s quite interesting.
Sheryl: Okay, thank you so much Liz and I hope to see you around online again.
Liz: You will do. Thank you. Right, thank you Sheryl, bye bye.
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