Turning Pain into Strength
Welcome to "Turning Pain into Strength," podcast where real people share true stories and unforgettable journeys of strength. I’m Michelle Eberwein, and after living with chronic pain from breaking my back, autoimmune diagnosis' & enduring multiple surgeries, I understand the challenges of "pushing through"and navigating a flawed medical system.
I invite you to join me as we share uplifting stories, explore new ideas, and provide hope and encouragement. Together, we’ll uncover tools and strategies on turning pain into strength and empower each other on this journey of healing and personal growth.
You are not alone.❤️
Turning Pain into Strength
Meet Karen Duncan: Learning to Win Without Surrender
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Karen Duncan's Story:
Living with an invisible illness often brings relentless self-doubt: “Am I really sick, or just being lazy?” Through my experience, I’ve learned that embracing your limitations is not a sign of weakness—it’s a crucial step toward managing chronic health effectively.
One key lesson: focus on just three important tasks a day—prioritize them, and treat everything else as extra. This simple approach completely changed how I navigate life with chronic illness while running a business.
In this conversation, I share how my life shifted when Covid altered my body’s abilities, taking away basic functions like proper breathing and pain-free movement. I found strength by using digital tools to turn the “spoon theory” into concrete data, helping me make wiser decisions and maintain balance.
As co-host of the "Three Spoonies" podcast, I discuss how entrepreneurs managing chronic illness can succeed by setting clear boundaries, building strong support systems, and communicating openly.
If you’re on a health journey or supporting someone who is, this talk offers practical tips, heartfelt insight, and encouragement to live well within new limits. Tune in to discover how adapting can unlock unexpected strength and new opportunities.
YOUTUBE link: https://youtu.be/m_mW_CyeKro
Growing Up With Mysterious Illnesses
Speaker 1Good morning .
Speaker 2Hello , hello .
Speaker 1How are you ?
Speaker 2Not too bad at all , thank you . How are you ?
Speaker 1Good , good . I really appreciate you coming on my podcast , especially being a little new and telling about your experience and then where you are today .
Speaker 2Yeah , well , I'm one of these people . People I've always kind of had some illness or another , um , often something mysterious , and um , like when I was about seven , I started to have migraines and I had no frame of reference and I remember saying to my dad it's like everything's a video game , because my vision went blurry and I saw these little blinky things and , um , how old are you ? Uh , about seven , so okay . So , um , yeah , my dad it wasn't that he didn't believe me , but , um , my aunt has migraines and they were hugely debilitating . It's like , I'm sure it's not migraine , you know , maybe it's a headache , maybe you need glasses , uh , which it turned out I did . So , you know , um , but it didn't solve the problem and it ended up that when I was about um 11 , I was taking um I think you call them Tylenol 3 in the States yes which are not painkillers for children , really um
Speaker 2so , um , I sort of went to my doctors and said , but is there anything that can be done ? And they said , oh well , you know , you're nearly a teenager , it might be hormonal . It's like , yeah , yeah , it could be . Um , and then years later I found out I had polycystic ovaries . So probably was with hindsight but again no frame of reference for that at 11 , 12 . So it was a thing , and it probably wasn't until I got to university actually , that something was really done about it , because it was like , do these painkillers work ? Sort of . And you know it's like , well , we'll go with that .
Speaker 2And , um , at that point it was occasional enough that I could manage it , although , um , one of my big English exams when I was about 16 because we have exams at different times over here I couldn't see the exam paper and I ended up writing an essay based on keywords that I could read and I was sort of holding the paper like that so I could see enough to write , and it was um , and yeah , people have said since oh well , why didn't you tell them about it so you could get , you know , something done ? They said , well , I , how could I have proved it ? That's the thing you know .
Speaker 1I mean that was it ?
Speaker 2well , that that's the thing . It's not like there's a test . You know , even if they did an MRI scan at that moment , they couldn't necessarily tell how it was going to affect me or whatever else . So it's kind of like , well , I mean , I ended up with an A star , so , um , which probably says more about my blagging skills than anything else . But yeah , it's one of those live and learn things that again , you kind of . You know , you just get on with it , because it's like I mean , I could have put my hands up and said I can't read the paper , um , I'm not going to take my English exam , but I I don't know what they would have done about that . I might have to retake the whole thing , and it's just like you know what I'm gonna do . It um , which may not have been the best decision , but at 16 I was like it'll be fine , you don't need to read questions .
Speaker 2Yeah , yes , but , you know , it probably probably would have helped . So , you know , I've had migraines and I finally saw a specialist in my 20s , basically through sheer luck , because there's a lot of migraine specialists near where I live and there's like a special migraine clinic and stuff like that . So , um , I had access to treatments and things that I probably wouldn't have had in other parts of the country or possibly . So , um , I started to have Botox treatment . I'm trying not to be too evangelical because , um , I know you can , you know it's like it works for me , it'll work for you , try it , but it won't necessarily . And I've had people try it with me and said , oh you know , have you tried drinking water ?
Speaker 2and it's like , yes , yes , I've tried drinking water yes , I've done yoga , I've taken Tylenol and I drink water yeah , yeah did not , did not cure , but , um , I tried the Botox and it did really help and , oh god , it's sort of . The idea is that you can't , you know , when you're in pain you kind of frown , you know that migraine , look , we kind of go and it makes it worse . So the idea is , because you can't , it's sort of along the hairline , because you can't sort of do that frowny thing , it sort of takes the edge off you know . It's kind of like , oh , this is all right , actually this is kind of manageable . And it was , um , and things sort of got a lot better for a while and until I caught Covid , which was where , um , things went wrong . It was , um ,
Coping With Post-Covid Health Changes
Speaker 2I think it was either one or two days out of lockdown and I caught Covid and , um , I missed my friend's wedding . It was all a big deal , but I said , you know , I'm not gonna risk going to a wedding and spreading this to everyone , absolutely not .
Speaker 2And , um , I found that it was um , everyday things I could do before I couldn't , so I used to walk to and from my work , which is about 45 minutes , and um , it's , we're very much more set up for walking , I think , over here . So it's , um , probably not such a big of a deal as it would be . I know , sort of , in a big city , walking 45 minutes probably might not even be an option , but , um , but yeah , I couldn't do it anymore and I found even getting upstairs because my timetable at work meant I was in the basement in the morning and on the fourth floor in the evening . Because , of course , and I'd go up two flights of stairs and I'd be like , and I'd have to stop . So I started using the lift because , um , I'd sort of be holding up the stairs because I'd sort of go , I just need to stop . Sorry , I know I'm in the way , but I need to breathe .
Speaker 2And it was kind of like I can breathe , I'm good at breathing , which sounds , you know , you don't think you take , like , if you've got a sore throat , something , you go oh , it's not swallowing , amazing , it's like I'm good at breathing , you're giving yourself a pat tag . Yeah , it's . And I'm like I was in choirs as a kid and we'd be told I'll breathe from the diaphragm . I didn't know what that was , but I did anyway . Or if you wanted a balloon blown up , I'd be like , yeah , I'll blow up your balloon , I'll blow up your airbed . You know , check me and my breathing , yes , yeah , skills .
Speaker 2And suddenly I couldn't do that and I found , um , I couldn't take a full breath and , yeah , it was really bizarre and I had to sort of cut back on what I was doing and it's like , and I did completely the wrong thing , to be honest , which was right . I'm going to push through , I'm going to try and do it , and then I go , oh , why do I feel awful the day afterwards ? And it's like , you know , like sometimes when you exercise , it's a couple of days later that it hits you , and it's kind of like that . It's like , oh , why is it that I overdo it on a Wednesday ? And then on Friday I feel dreadful . It's like maybe there's some link , but , um , yeah , I'd not picked up on that .
Speaker 2And it was only , um , when I went on Twitter and it's someone who had ME and she said have you heard of PEM ? And I was like , what's PEM ? And she said , oh , it's post-exertion malaise and it's after you overdo it . Uh , you get like flu-like symptoms , like your throat will really hurt , you'll feel tired , you'll feel achy , and I was like , yeah , I get that . All the time I thought I was just coming down with bugs because , like my immune system , maybe it's not that great , since I've been ill . I assumed I was just ill all the time . And she said , right , look , look at it , see if there's a pattern . And it's one of those things . Once I looked at it it I went oh yeah , but I'd if it hadn't been suggested I'd never picked up on it . But I started sort of looking at a calendar and a sort of days where I'd done more than usual and days where I felt terrible and it's like oh , oh , okay that had to be a sense of relief that there's someone else going through these symptoms and you're not .
Speaker 1You know you're not crazy . This is really something .
Speaker 2Yeah , and also it's if I know what the pattern is , I can start to manage that . I was used to doing what I used to do and it's like that was part of me . It's like , um , you know , like a reverse imposter syndrome and it's like what if I'm not really ill ? What if I'm just lazy ?
Speaker 2right and I think I was very much in that . It was like , well , if I wanted to and I tried a bit harder I could do everything I used to , and I couldn't . But and I , once I saw these patterns , it was like , oh okay , this is impacting my health and it's meaning that I have to write off most of my week in order to do too much for three days , sort of thing . And it's yeah , and you wouldn't choose that trade-off , generally speaking .
Speaker 2So it's and I found this great app . So I've got a tracker that tracks my heart rate and heart rate variation so it can work out when I'm overdoing it and warm me . It's kind of like , you know , spoon theory . Yes , absolutely yeah , so it tracks how many spoons I have left in the day , and I think of the spoons as spoons of energy , so it's like I've got three scoops of energy left , so that's a nice way to think of it it just , it just makes sense to me that way , so it sort of works out .
Speaker 2Um , this is what's normal for you and this is how much energy you personally have , and I found that a three hour class would wipe me out , whereas I used to do it without thinking . Suddenly , three hours of teaching , that's my energy for the day and I can't teleport to work and you know I need to eat for an after and have a shower and all those things so it's like , okay , that's not going to work .
Speaker 2So I said , do you know what ? I'll start doing two hour classes instead of
Learning Pacing and Energy Management
Speaker 2three . And , to be honest , my students didn't mind . They said , honestly , three hours can be a bit long anyway , and I think it was also sort of helping to accommodate those students as well , especially because I was starting to work a bit more remotely and a lot of students who again signed up to things remotely were ones who maybe didn't have the health to get into town and go to their local college or whatever else yeah and you know , it's also all the people who hadn't been served before COVID who were told oh well , you can't do things remotely and we can't give you technology to make your life easier .
Speaker 2And guess what they could ? That's right .
Speaker 1We learned a lot about that .
Speaker 2Yeah , well , that was it , but then there was no excuse they could say well , do you know what we can do ? This , actually , it's making it easier for a lot of people , and also people who might have anxiety or agoraphobia and not want to go outside . You know , if you can do things through your computer or you know we're , you know , in completely different parts of the world and we can talk to each other , and it's sort of you know all those things that wouldn't have been possible without being able to do things online , it's like , ok , we can do this , this works . You know , we can be a bit flexible with timing and also , not everything has to be nine to five , because not everyone is a morning person and you know , I know some people .
Speaker 2Oh , sorry , I interrupted there .
Speaker 1No , no , I said absolutely . People are not morning people , and especially people that are chronically ill .
Speaker 2it takes them a minute to get moving in the morning yeah , absolutely well , that's the thing it's , um , you know , if something can start in the early afternoon instead , and that means you can have more leisurely start and you can be in a better place to be able to take in information , then honestly , um , I'm all for it . But there might be other people who like oh , I would rather have it in the morning when I've still got energy , because you know it's um everybody's different , yeah , completely , and they're sort of .
Speaker 2There can also be sort of that moral thing as well , but if you're up first thing in the morning , it's because you're a good person , and if you're up later it's because you're a bad , lazy person . It's like , well , people work in the same hours , it doesn't matter when it is like it's getting done , but you know why . Why is it a problem ? And you know , putting moral values on the time you naturally wake up is so bizarre .
Speaker 1It is it's , it's , but you found that that works for you a lot better managing it , because you can take a shower and you need to rest for a couple hours before you have the energy again to do what you need to do for the day .
Speaker 2It's all checks and balances when you're sick yeah , I think that's a really good way of putting it . It's also um sort of assessing each day as it comes , which um is . Another thing I have sort of with the app is each morning it sort of gives you a rating , so sort of red is you're really worn out , take it easy , and green is like everything's fine . You know you're probably all right , so you can sort of look at that and say , okay , um , maybe I can move things around a bit or maybe , um , this thing here isn't essential and I can move that and have flexibility .
Speaker 2And um , one thing I found really helpful actually is I used to have to-do lists that were like facts , were all along , like honestly , there'd be things on it and there'd be things on it and they'd be on it the next day and they get pushed to the bottom and the next day they'd still be on the list and three weeks later they're still on the list and um , you know , when you look at it and think , yeah , and also that thing where you know you have the days where you do bits and bobs and actually you've got loads done , but it's um , you know , maybe I spent 15 minutes doing this and I replied to this email it needed doing .
Speaker 2But at the end of the day you go , oh , I've done nothing , so I started doing what's called to-do lists . Okay , so it's um , you put down three things that are achievable , that actually need to get done , and anything else you put on as a bonus . So it's like and I also , um washed some clothes or um found that person I needed to phone , and so at the end of the day you can look at it and say do you know what I have done things , because it's so easy to underestimate what you've got done and just feel and look at things you haven't done rather than all the things you have .
Speaker 1Yeah , it's very easy to look at the things you haven't done and then you start feeling bad because you're not doing the things you feel like you should do . So I like your three things on a list .
Speaker 2I wrote that down because I like that three things on the list only yeah , it's , um it's uh , not not my idea , but um it's one I will use because um it's , it's achievable and I think that's a good word achievable yeah , it's um . There's no point feeling upset about all the things that you haven't done when , um , I
Self-Talk and Mental Health Challenges
Speaker 2think we can do ourselves a disservice as well . Um , you know , there can be that thing where it's like oh , you can do absolutely anything .
Speaker 2It's like well , I couldn't do everything before I was so that's true , that is true you know , realistically , I'm not going to become an astronaut , it's not within my skill set and you know it doesn't make me a bad person that I'm not an astronaut because I'm not going to be and that's not what I'm good at . And I think it's sort of that well-meaning thing where people are like oh , you can do anything and it's like that well-meaning thing where people are like , oh , you can do anything , and it's like , well , not really .
Speaker 2Yeah , it's um , it's like , I think it's like . When I did my teacher training , there was a study that looked at self-esteem and what they'd originally set out to do was , um , to see if increasing self-esteem helped educational outcomes , and I thought well of course it will , but the study said , no , actually there isn't that close of a link .
Speaker 2I thought , well , how can that be true ?
Speaker 2And they said what was actually more important was people having a realistic perception of their skills .
Speaker 2So , rather than being told , say , I don't know , you're great at geometry , and so you go , oh , I'm great , this , I don't have to put the effort in , and then maybe if you come across a problem you can't solve , you don't know how to process that because you're good at geometry and you should know this , whereas if it's like , okay , you're good at these skills , uh , this is something to work on , then you know sort of how to divide things up and it's less you're good , you're bad , it's here's what's going well , here's what to work on , and sort of when that was in place , um , that's when people really started to improve .
Speaker 2And I think that's the same sort of assess where you are now . There'll be things that you know maybe it's you can't do yet , maybe you'll be able to do in six months , maybe it's something you're not going to be able to do . And it's sort of looking at now , if you can do A , b and C , then do A , b and C and be proud of the fact you've done that and you've achieved that , rather than saying , oh well , what about D&E ? This other person can do that .
Speaker 1Right , that's so hard for people .
Speaker 2Yeah , it is , and it's so demoralizing and it's sort of , if you're looking back at , maybe things you could do before that you can't do now . That's . I think there is a bit of a grieving process with that as well , because , you know , maybe I had plans , this is where I want to be with my career or with a certain talent or skill , and maybe that's not there anymore and you have to or maybe you have to relearn things , which is difficult as well , right ?
Speaker 2and scary it is , yeah , it's a bit of a rock ball , because , again , we have those perceptions of ourselves and if it's like , well , I'm good at this , and if suddenly you can't do that thing , it can be such a huge part of your identity , sure , yeah , we absolutely need to acknowledge that and say , um , well , this is something I can't do at the moment , or can't do so well , or have to learn to do differently . Um , you know , whether it's you know , putting your socks on , or um , like , I hadn't realized until I went to the physio that I put my socks on in a really odd way because I can't bend particularly well , and the physio went , oh , did you work out a way to do that ?
Speaker 2and it's like , oh , I hadn't even noticed , I've done that you did it automatically yeah , you know , you develop your ways around things , or it's like I had no idea I was dyslexic until I went to university and I was filling out a form to pick modules and my tutor went oh , you're dyslex . No , I'm not dyslexic . He said you might be . Do you want to go for an assessment ? I went for an assessment . I'm really dyslexic .
Speaker 1Wow , no idea all these years .
Speaker 2No idea , but it's like when I was about 14 , I had to think about which way around the number four goes . Okay , yeah , it's , I just have a mental block on it . Or um , in an exam I forgot how to spell the okay , and no matter how I wrote it , it just looked wrong . But I'd sort of worked out ways around it and I checked my spelling because I knew I wasn't great at spelling and you know , I just in my own way , I've worked out ways to cope with it . And um , yeah , I think . Yeah , I think that's credit . We need things , giving ourselves credit to say , well , actually you've worked out a way round problem .
Speaker 1I was going to say , I mean , good for you . How many people would just kind of curl up into a ball and say forget about it , I'm not even doing this anymore . And then here you just naturally made it work . I mean , that's , that's a lot of courage .
Speaker 2I think it is , but I think it's something that , again , you only notice when you look back , and I think that's a value of people looking at . You know , what have I done over the year ? Is this something I've achieved , something I've managed ? And also sort of asking friends , colleagues , family , um , because there'll be things you've got used to and you don't think about . But right , someone said well , do you remember when you couldn't walk up the stairs and , um , you used to sort of have to sit on the middle step and then go the rest of the way . And now you can do it . Or , um , we forget as people we're just now is normal sort of thing , and um , sometimes you forget you have made progress , there are things you could do that you couldn't do before . You know , sometimes I've people can be absolutely ingenious and sort of ways they've learned to sort of cope with things . Or
Business with Chronic Illness
Speaker 2you know whether it's um . You know , my memory is not great , so I'll put some post-it notes up , or right , yeah or like reminder apps on your phone .
Speaker 2There's nothing wrong with using things like that that make it easier , and it's much better to sort of acknowledge oh you know , I struggle with this . These are things I can put in place to help , and there's so many sort of tech solutions that are there and someone else has had the same problem and they've said you know , here's a solution , whether it's , you know , a reminder to drink water or you know , and once you're into the habit of it , it's fine . But it's sort of getting into the habit and finding out what works for you , because , I mean , I've talked about being evangelical about things and there's things that I love and I swear by that . Other people would say , well , I don't understand the logic . Now , I don't understand the logic there .
Speaker 1I don't like that idea , right ?
Speaker 2Yeah , we are all so different and we're all in different places and I don't think there's anything wrong with trying things as well and saying no , not for me it didn't work , I didn't like it , it didn't feel comfortable . And again , there's a bit of bravery with that being prepared to try something . It's you know . If someone thinks they're not techie and they're like oh , I don't know about using an app , well , give it a try .
Speaker 2I mean if you hate it , delete the app . Goodbye app , it's gone . You know , yeah , it's . We don't know what's out there , we don't know what we don't know . And I think that's sometimes informal conversations I've had at networking meetings or with a friend . They've said oh , have you tried this ?
Speaker 1Mm , hmm .
Speaker 2No , but you know I'll , I'll give it a go , go .
Speaker 1and right , that is the power of social media . I mean , honestly , I love social media to connect with others going through the same struggles and people come up with like the simplest ideas that you're like , wow , I should try that . Or or meditation At first I was like I'm not going to meditate , like that's silly , you know , and now it's like , wow , it really calms my nervous system . So I'm not constantly in that fight or flight mode and it just gives me a minute to just take a deep breath , relax and then start again , whatever it may be , whatever time of day , and you get some really good ideas from people going through the same struggles .
Speaker 2Yeah , definitely . I think the best ideas are the ones that , as soon as you hear them , you go oh yeah , that's obvious , but you wouldn't .
Speaker 1Right , there's simple things and you're like , why didn't I think of that ?
Speaker 2Yeah , it's wonderful things out there and just the level of ingenuity of people um putting things together because they have to and it's like if it can help someone else , um then I'm all for it . Or um , people sharing things like journal layouts or um , you know , if there's something that's worked for you , it's like . I mean obviously not if it's copyright . I'm not talking about sharing someone else's material or anything right , right .
Speaker 1You know , if it's a lot of things to help , so many things to help if you're willing yeah , I think that's another thing , giving it a go .
Speaker 2It's like you said , there are things that can seem strange or um , it's also sort of that beginning point that you talked about meditation for some people it might be , you know , start with a short guided visualization or something , or something shorter and um , also sort of that . I think that's one where , um , if you're sort of following audio or something , it may be the first person you come across like you don't like their voice and you find it a bit jarring or they're a bit too perky for you , and there's there's so many options out there and it doesn't have to be like you know back in the day , when you get an hour long tape that you'd listen to the whole tape .
Speaker 1I still have those tapes .
Speaker 2I mean , I'm not saying they're all bad , I know .
Speaker 1I have tapes like that . Yeah , there's just so much stuff to help .
Speaker 2Yeah , like there's sort of five minute meditations on YouTube that can be . You know , try it , see if it helps . And you know most people can spare five minutes , whereas an hour might be a bit of a time commitment or an energy commitment as well yeah , definitely yeah , it's sort of finding the right options and also , sometimes , I think , having the courage to say no , that didn't work for me .
Speaker 2Or sometimes you kind of want things to work , especially if it sounds like it's quite a neat solution or there might be something that works someone else that works for you , and , um , you know , like I'm a huge fan of sort of electrolytes , um , so I found I would drink so much water and still feel thirsty and someone said , oh , have you tried taking electrolytes ? And it's like , oh , yeah , because I've washed all the nutrients out of my body by drinking .
Speaker 1You know yeah , I've got a glass a day or whatever .
Speaker 2So it's like , oh okay , yeah , yeah . But there might be someone else who tries that and goes oh actually , um , and you know you do have to sort of look at other things . You know , if you're really taking a multivitamin , possibly , and then you're taking more magnesium and maybe you've got a sleep thing that also has magnesium in , then you know you do need to be careful because you can definitely have too much of a good thing . So of course , of course that , and there are some people out there who are absolute charlatans as well .
Speaker 2So yes , yes , absolutely yeah , there's certainly things I've come across . And it's like that does it . As soon as someone says cure and it's like , oh , I can cure your migraines , it's like , oh , so , I'll never have migraine again . Oh no , well , it's not a cure then . Or you know , it's like have you tried this magic milkshake ? And it's like does it come with magic beans as well ?
Speaker 1yes , I know . I know everybody wants to cure you , yeah it's well , that's .
Speaker 2That's another thing , I think , excepting that you know this is a long-term condition or an injury that's going to take a while to recover , and you know there isn't a quick fix and there are things that can help and there's things I'm prepared to try , but um , also sort of going into things and say , well , this might not work , and um , that that can be a difficult part of it if you really want something to work and other people said , oh , it's great and it doesn't work for you .
Speaker 2That's , that's difficult , but if you consider it , that's okay . That's nothing . I've ticked off the list . That's getting me closer to the thing that will work right , that's true .
Speaker 2That's a good way to look at it as long as you're not spending a fortune , though , because right , yeah , scattergun , it's like I'm gonna try everything and it's like , oh well , this is only $20 and this . But when you add it up , it's like , actually that that's a lot and yes , but then if you start too much at once , sometimes it's hard to tell what actually helped right , that's true too so it can be sort of you know , like new year I'm going to try all these things all at once , or over the summer I'm going to try these things .
Speaker 2But then it's like , well , I don't know , it's having a benefit , but I don't know which bit's having a benefit . Or sometimes it's like is it because I'm sleeping better , because I'm considering my health a bit more ? And is the sleep . Could that explain it ? Or it's ? It's so complex , isn't it ?
Speaker 1your health and it is and you're constantly searching for better things to help you . It's like a multi problem , because you're working with your doctor , you're trying to get things to help you , you're trying to get people to believe you because you can't see it . You don't want people thinking you're crazy , but you have this real invisible illness and it's hard for people to relate when they can't see it . And you've got your makeup on , you've got your hair done and they don't know that that took three and a half hours , yeah that's the thing .
Speaker 2If it's like , if people see you out , they don't realize that's probably one of your best days because you were able to get out and um , that and it's um you know , some terms can be a bit overused like , um , people can sort of talk about trauma and it's like , okay , that was , that was an upsetting thing , but it's not actually trauma , or people can talk about Trauma and triggers .
Speaker 2Oh my gosh , yes , absolutely . Oh , I was so triggered because you like a different basketball team to me , right ? No , you weren't , absolutely . I'm very glad you weren't actually triggered , because it's awful , but yeah , it's . There's things people know , so it lacks meaning , or things like fatigue . Someone can say , oh , I'm fatigued and it's like , oh well if you have a nap , and it's like no , no , no , I can't think because I'm so tired I can't form a coherent sentence or um and you can take a nap , and you'll still get up and feel the same fatigue , whereas everybody else can take a nap and they're energized , ready to go again .
Speaker 1And we take a nap and we're like , oh my gosh , I could sleep 12 more hours yeah , my friend is the queen of power naps .
Speaker 2Like she can set her alarm for 20 minutes . She'll go have a snooze , come back 20 minutes later and it's like that's about . Like I can't fall asleep in 20 minutes no , I mean neither absolutely can't compute it . It's like do you know what ? That ?
Speaker 2that's amazing that is very lucky yeah , it's like , if , yeah , if you can do it , absolutely great , I'm all for it . And you know , I am all for sort of , you know , taking naps when you need to . But it's yeah , it's um . It's also one of
Finding Support Networks and Setting Boundaries
Speaker 2those things you don't necessarily know until you've experienced it . It's like you could hear symptoms ago oh , that sounds awful . Until you actually experience it's like oh , oh , okay , it's um .
Speaker 2Yes , yes yeah it's like you can hear about brain fog , but then when you can't think of a simple word and um or um , sometimes I'll say the wrong word and not realize I've said it right um , yeah , it's . Um , we actually had an Ofsted inspection , which are the school inspectors in the UK ? They sort of come around to check the teaching and , um , I was doing something on child care and , um , I meant to say children , but I said goats . Oh , oh , so how ? How would you make sure goats ? No , I didn't oh no oh , I did , didn't I ?
Speaker 2and um , maybe I was thinking like kids or I don't know , but um , yeah , completely the wrong words . They had no idea what I was talking about . I was getting frustrated because I was like , why ? Why haven't they ?
Speaker 1how did that happen in my brain ?
Speaker 2Yeah , or it's yeah . With migraines I used to forget words and I sent a message to ask someone to put something in the register . I couldn't remember the word register so I went the people name list in the book . I could not think of the word Right . Yeah , if you've not experienced that , it's such a bizarre thing . But um it is . Yeah , it's an . Oh , I'm quite fortunate in a way . I've got on my two business besties , who are also spoonies , so um oh , that's awesome .
Speaker 1Some support all the time for you yeah , we are an inbuilt support group .
Speaker 2We're very good at sort of saying to the other two right , take a rest , take a break , take it easy .
Speaker 1Oh , that's lovely .
Speaker 2That is so nice . Well , it is a wonderful thing because we get it and we also give each other the grace that we don't give ourselves .
Speaker 1Oh yeah , that's really a good point .
Speaker 2point too , we're so hard on ourselves yeah , I think if our internal monologue , if we said it to anyone else , we'd be shocked that we were we'd be in an asylum and it's like yep , yep , I said that to myself and , um , yeah , that's that's , especially if you know , if you have intrusive or you know those automatic thoughts and you know that nasty automatic thought and it's like , okay , that's not you , that's something that's been put in your head and the thought you have after that is the real thought , but it's , um , yeah , that's it .
Speaker 2It's difficult because we're not horrible people , but the way sometimes we speak to ourselves is yes , that is such a good point it's it's when it becomes automatic right , and again we know it's not right because we wouldn't say it to anyone else correct right just to ourselves yeah , but it's like we live in our head all the time and the amount of negativity you can give to yourself , sort of going oh wait , you're lazy . You know , if you tried harder , if you did better yes , all the things like that yeah , it's , it's , especially when it becomes habits .
Speaker 2That's , um , you know , it's . You know , sometimes you can look back at something , or like you know . However , one remembers that nasty teacher who told them , you know , they weren't autistic or they weren't good at math , or you know , there's , there's always something and that sticks in your head and forever yeah and you know it's like um , I know someone who was told she wanted to be a lawyer and she was told , oh , you're too stupid to be a lawyer like you're too stupid . You know why would you say that to a child ?
Speaker 1right , it's a it's emotional abuse actually , yeah , it's well it if .
Speaker 2If that child called another child stupid , you wouldn't accept that .
Speaker 2But it's or sometimes you can throw away things . You know it's like you might have a well-meaning relative or something . Or you know it's um things that just stick in your head and you sort of go oh . Or you know , sometimes someone didn't even mean it , it's just the way it came across was . Or you know , sometimes you can twist something in your head . You know someone said something neutral and it's like oh well , they obviously hate me because they said that yeah , correct , yeah , definitely , definitely .
Speaker 1We definitely have to take better care of ourselves and the way we talk to ourselves yeah , it's , it's , it's difficult , I mean , and sometimes it's difficult to notice .
Speaker 2But , um , yeah , if you imagine saying those things to someone else , then you suddenly go oh right , yeah because I wouldn't have said that , I wouldn't have said that out loud , I wouldn't have said that to another person , I probably wouldn't have even thought it about another person right .
Speaker 1You should not think like that about yourself . It just brings you down more , more and more . Like you're a failure when you keep talking to yourself like that .
Speaker 2Yeah and those sort of words that , even if you say it so often that you think , oh , surely it's lost meaning , it's , you know , it's it still has meaning .
Speaker 1It does Over time . It starts just being brainwashed in a way that you keep hearing that from yourself .
Speaker 2Oh yes , confirmation bias is so strong . It's like , you know , if you spoke to 100 people and one of them didn't like you , it's like oh well , no one likes me .
Speaker 1Yes , yeah , you're right , absolutely , absolutely . Now you co-host a podcast about running a business with chronic illness .
Speaker 2Yes , yeah , we're called Three Spoonies and we set it up because there were lots of podcasts about business and there are some podcasts about disability , but there wasn't any crossover , really any crossover really . And we know so many people who've started businesses , often because employers wouldn't accommodate them , which or if people were too ill to do things they were doing before they've started businesses , and it's sort of seen as an easy option . You know , I'll just start up your own business , you can work your own hours and it's like , well , yes , you can , but you still need to make money and there's a huge learning curve with it that people don't tell you and it's like you know for each success story . You see , you don't know how much prep went into that . And also , um , a lot of advice is for people who don't have chronic illnesses , and you know a lot of business books or mindset books . They're all like go out there , do it , get it done . But there's not that caveat If you can , when you can , or do it differently or outsource things , or you know .
Speaker 1You're right , they want you to 24-7 business . You're not gonna sleep , you're not gonna yeah , you're gonna be at your desk and you are just gonna work until this business is successful .
Speaker 2It's like what about us well absolutely that you , you absolutely can't pour from an empty cup . And if you've exhausted yourself because you're doing like this , hustle , hustle , you know got to be grinding , got to be doing stuff all the time , and it's like , well , at that point , if you're following the exact model of someone else , it's almost like you've become an employee again , because oh , that's , true , yes , you know you're doing it exactly in the way that they would and that may not work for you .
Speaker 2It might be that a full work day is exhausting but you could do it in chunks . Or it might be you do half days and you know that works better . Or it might be your days when you feel creative . So you do creative bits and you know you sort of break it down .
Speaker 1Our whole life is a balancing game . From this point on or from when we got sick and moving forward , this is just our life . Now it's balancing , it's talking nicely to ourselves . You know things you really have to learn or relearn .
Speaker 2Yeah .
Speaker 1And also boundaries are a big thing .
Speaker 2You know that's a big one and you know they're like , well , I need it done now and it's like that's nice . But you know , if you sort of make it clear from the beginning , you know I do have a chronic illness , um , I can do things by agreed deadlines , but um , I either I don't respond to emails outside of these hours or , um , I don't accept last minute tasks , or , you know , if someone says , oh , could you ? Just , as soon as someone says that I'm like right , I'm adding 20 straight away because any , could you just is going to take a lot longer than we both think .
Speaker 1Right , for sure , that's funny , can you just no ? Yeah , that is very true . As soon as someone says that , it's like well , there you go , that's another hour .
Speaker 2Yeah , and that's you know , things may take longer than they used to , which um is another thing to get used to . Um , when you're planning out how long things take I find generally they take longer than I think anyway , but um sort of time things you know .
Speaker 2If you're charging , say by the hour , work out how much you can feasibly do in an hour and worse days and better days , but you know if you can kind of average it out and also see how you like to work , which is a huge revelation , because we're I think we're so used to , you know , being at school and having you know .
Speaker 2This is first period period , this is what we're doing and we get used to doing that and feeling comfortable with that , but it may not be the best way for you to work . It might be you like doing similar tasks together and you know like if you're sort of on a roll with something , it can be easier to keep going with that . Or it might be there's some tasks that you find really tiring , so you need to spread them out , or you don't want to do that as well , which can be um , another thing that you think , um , this is going to be the main focus , what I do , and you go into it and go actually I quite like this bit and I'd like that . And um , yeah , because you don't necessarily know , and um , there may be things that are mentally exhausting that , um , you can be honest with yourself and say , actually , I don't like that , that's a bit much , I'd really rather not . It's um , all these things you don't realize . It's okay to say , no , I don't want to do that .
Speaker 2No , I don't do that oh , that's so hard to do , yeah yeah , it's one of those things it's sort of easy to say in a conversation like this , but you know it's like , ah , am I sort of potentially turning down money ? Am I being overly fussy ? And it's like , well , no , happiness , quality of life matters , and maybe it's just not the best fit right . It's it's sort of finding your way with it and , yeah , boundaries definitely .
Speaker 2Um , I think there are things we put up within business and work that we wouldn't put up with in personal relationships right and yeah , I think we need to feel more ready to say this isn't acceptable , I'm not okay with this , this is not what we agreed . Um , yeah , and you know that's okay because , to be honest , if you lose a difficult client , probably a good thing in the long term right , that would just exhaust you and make things worse for you physically and mentally .
Speaker 1So , yeah it's , you got to have boundaries and you got to say no . And you , even if you start taking baby steps to say no , it will benefit your body and your brain later
Advice for Chronic Illness Entrepreneurs
Speaker 1yeah , absolutely , and it's also not a positive thing .
Speaker 2I think we see it as a positive thing that we're stepping up and , you know , helping out and it's like , but why are we doing that ? And sometimes you sort of look at some of the people pleasing behavior and it's actually quite unhealthy and it can be more that I'm afraid of rejection absolutely , you know and that is something that we all do need to look at and you know , some of us it may not be an issue , but I think we're sort of brought up to be good and be polite and be nice and um , that can be sort of so ingrained that it can actually become something unhealthy .
Speaker 2When it's kind of like you can never say no , you can never have boundaries , um , you need to make yourself ill doing something that no one else is prepared to do and it's yeah , it's , it's not worth it and again , it's hard and , like you said , sometimes it is practice at sort of saying no , or you know , one tip I was told is have a little pause before you say yes yes , exactly you know , is this actually realistic ?
Speaker 2is it something I want to do ? And sometimes just having that pause makes you go . Actually , I'm not going to say yes , yeah .
Speaker 1I know that .
Speaker 2Yes , that is definitely some good advice , yeah , yeah it's , it's sort of that , that muscle memory thing isn't it where you know it's kind of , oh , I'll do it , I'll do it , and um , yeah , just that moment to pause and reflect and say , well , actually I'm really busy this month , or um you know , I have to take care of myself helped and yeah , that's I mean .
Speaker 2If doing that means you can't do something else that you need to do or really want to do , then because that's the thing that's sort of . There's also that opportunity cost and it's . You know , I did that thing . It only took half an hour but it meant I didn't have the energy to do this other thing right it's it's . There's always something . There's also sometimes value in not doing anything in particular , or just having an evening off or a bit of me time or a bit of self-care .
Speaker 1And I've started to care is so important , especially when you know you're doing day-to-day things . You really have to pause and take care of yourself , even the little things you have to do , like a bath with Epsom salts or you know a little bit of light stretching or just something for yourself that really pays off .
Speaker 2Just the little things yeah , I started to put it in my diary because if things are in my diary , I do them , whereas otherwise it'll be like , oh , just do this , and just do this and just do this and then the thing doesn't happen .
Speaker 2And um , yeah , like you said , um stretching as well , it's um , I have , um , one of my students taught some excellent stretches to do so . Um , when we have sort of a screen break during a lesson , it's like right , let's grab some water , we'll do the stretches . Wow , you have such a good support group . As I said , I'm really fortunate actually that I've got a lot of people around me who know their stuff and understand you . That's huge .
Speaker 1They understand you . That's huge . They understand you .
Speaker 2Yeah , I do acknowledge I'm very , very fortunate in that and , you know , not everyone has that . But it's also learning what you need . I was speaking at an event . By US scale it's like probably in the same state , it would be like a tiny distance , but by British scale scale it was quite a way away .
Speaker 2So , um , my business besties came to support me and we went up and stayed in hotel the night before , got a decent night's sleep , so the next morning I wasn't stressed because I had to get there first thing and whatever else and you were ready to go because you took care of yourself yeah and um , you know , obviously there was a cost to stay in the hotel and whatever else , but , um , it meant not having to rush there first thing in the morning and being stressed because what the train was like , what this happened , or if I got lost and it's like right , we're already there , we know what works that's really really nice and a lot of people they .
Speaker 1When they get hit with these chronic illnesses later in life , they push everybody away because they want to . They self-isolate and you know you've got friends who are sticking by you . They won't let you isolate . It sounds like you've got really good friends .
Speaker 2Yeah , I think , finding that support network wherever you can and , like I said , sometimes it's social media or groups , or , and again , finding the ones with the right vibe for you , because some might be a bit too perky . Perky . Or you know people who read like what Katie did when they were little did when they were little . I don't know if you , um , it's , what Katie did was fall off a swing , hurt her ankle and moan about it , but become a better person because of her ankle injury later . And there's some people like , oh , I'm so grateful for my illness and I'm like I'm not grateful , I would rather not have the illness , but , um , you know , it's um . I think you have to find people who have a similar sense of humor as much as anything .
Speaker 1You have to have a sense of humor when you're dealing with chronic illness . Absolutely yeah .
Speaker 2I think sometimes you need to step outside a situation and say do you know what ? This is bizarre , because sometimes you're so stuck in you know if you're waiting for a diagnosis or something like that can feel like it's taking forever and you know , to be able to step outside that or have someone else who's been there and said , yeah , it took this long and this happened .
Speaker 1Sure yeah .
Speaker 2You know also that perspective . It's , you know , sometimes when something terrible happens and you go . We'll laugh about this later , but now it's awful .
Speaker 1Yes , absolutely . So what is the best advice you would give somebody that has chronic illness , that wants to start their own business ?
Speaker 2I'd say it's . It's got to be something you really love and , um , that works with the skills you naturally have . Um , it might be you're really organized so you're able to plan things . It might be that you're really creative , you can come up with ideas . Other people don't . And , yeah , it's got to be something you care about because it's going to take a lot of your time , probably more time than you think .
Speaker 2But also get networking , meet people , make connections , even if it's people who do something similar to you , and it's like , oh , aren't they competition ? It's like , well , if you view it like that , yes , but it may be . You can refer back and forth , because you do slightly different things , you have different emphasis . It's also as you go along , you'll find what makes you you and what you think is your greatest skill might not be what people pick up on . Like someone said , oh well , I'm a VA because I'm really organized and she is , but that's sort of being a VA . People said , no , you know what we like about you . You explain everything , you make it , so I understand what you're doing and why you're doing that . And people kept saying that and went , oh okay , and that's when you find out , sort of what your niche is , what you do differently and , um , I , I think that's wonderful and I think learning about what makes people tick is so valuable .
Speaker 2Um , in terms of you know , someone might be an accountant , but there might be one accountant who loves when all the numbers match and that's what it's important . Then someone else might go oh , I love supporting businesses , giving them advice and it's sort of finding the one that fits and it's if you get to know people , then you sort of get to know , right , this person will work really well with this person and you can refer exactly the right person to them . But also , you know who's best to work with and I sort of love when I meet people saying , well , what do you love about what you do ? And you know , when you see someone's face light up and you're sort of like , ok , I get you , I get where you're coming from . Either I think we could work together or I don't think we could , but I know someone who would get on with you . Um , things like that .
Speaker 2It's um , also , don't expect to make a fortune straight away , because you probably won't . Um , it takes time and more effort than you'd imagine and there'll be some people who are influencers online and maybe they started 20 years ago , when it's easier to grow an audience , or they've already done the hard work and they've forgotten that bit . Also sort of um , get to know other startups , because it may be you can do a skill swap if you've not got a lot of cash . But you could say , well , I've got this skill , I can do this to you if you'll do this in return . So I had someone took some photos for me and in return I helped them with some writing they needed . That can be a great way to sort of connect with people and also get things for free or cheaper if you've not got a lot of money starting up .
Speaker 1I really enjoyed our talk today . It was really , really nice . I got a lot of good ideas to put down for people . You know like I really love your three things on a list . I mean that really stuck out to me because I've never heard that one
The Importance of Honest Communication
Speaker 1before and it's attainable for anyone to put three things down on a list for the day , whether it's just , you know , making the bed something simple or making dinner , just little things that you know that you can do , which is the best point of that . It's three things that you know you can do not . You know three things like I'm going to paint the house and I'm going to , you know , can do not . You know three things like I'm gonna paint the house and I'm gonna , you know , do the gardening , and you know you can't put crazy things on there . But three things that you know you can do that day .
Speaker 1I love that thank you , and thank you for having me as well is there any you would like to talk about before we wrap it up ?
Speaker 2um , I think , just find your support networks and also be honest with your loved ones as well . If you are having a tough time , um , sometimes we feel like we have to be brave all the time and um it's okay to say do you know what ? I'm having a rubbish day , or actually I'm really anxious about this doctor's appointment , things like that .
Speaker 2Um communication is so big yeah , and even if people don't fully understand , if that means they allow you a little more grace or they're a bit more supportive or you know , maybe they can help in some way that you'd not thought it's . Yeah , um , be honest , keep communication lines open and don't feel you have to be perfect all the time , because none of us are very true .
Speaker 1Yes , nobody's perfect , and we need to have grace for everyone too . Everyone could be going through something and you don't know it . Just like invisible illnesses , you just don't know what someone's going through yeah , that's the thing .
Speaker 2It's sort of whatever happens today might be the final straw . It may be there's been weeks or months of things leading up to that that we don't know about . So you know . Again , it is okay to say I'm feeling , you know , a bit sensitive today and and be nice .
Speaker 2Be nice to me , I'm not yeah it's like I think there was something to be said for in Victorian times , where people would wear black and have a year of mourning and everyone would be nicer to you because they knew you were mourning , which you know we don't have now . And you know , it's almost like if you could have a pin badge or something with like an emoji or something on . Like I'm feeling really rough today . Please be nice . I think that would be great actually . Um , maybe we need to introduce that as a thing or you know , like those wristbands or something , or sort of a color-coded thing or something .
Speaker 2I feel this should definitely be like a universally recognized thing yeah , not like that pain scale yes , yeah , yeah , it's um the number of people I've seen have looked at the pain scan and gone . Oh , oh , okay , it's not just like you've got a little bit of an owie and it's like , no , I know I know that pain scale is crazy , but well , karen , I really appreciated meeting you today .
Speaker 1You are just absolutely lovely . Thank you , karen . Have a great week . Yeah , and you take care bye .
