The Sunflower Conversations
Welcome to the Sunflower Conversations, the podcast where we explore the experiences of disabled people with non-visible disabilities through the lens of the Hidden Disabilities Sunflower.
This is a space to hear authentic stories from disabled people navigating life with non-visible disabilities such as chronic illness, mental health conditions, neurodivergence, and more. While most episodes focus on lived experience, we also feature occasional insights from experts in healthcare, accessibility, and inclusion.
Whether you or someone you care about wears the Sunflower, our conversations aim to raise awareness, build understanding, and help create a more inclusive and compassionate world.
Empowering voices. Raising awareness. Challenging assumptions - one conversation at a time.
The Sunflower Conversations
ME and CRPS with Adele - Australia and New Zealand
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In this episode of Sunflower Conversations, James Dunn speaks with Adele Evans about ME/CFS and developing complex regional pain syndrome (CRPS) following an accident.
We discuss the realities of chronic pain, the challenges of navigating an often misunderstood condition, and how the Hidden Disabilities Sunflower can help make everyday experiences more inclusive.
• Adele’s early ME/CFS symptoms, the journey to diagnosis and finding a GP who listens
• how fatigue, pain and family life shape everyday decisions
• developing CRPS after an accident and the challenges of finding effective treatment
• what CRPS can involve beyond pain, including touch sensitivity, swelling, temperature changes, spasms and brain fog
• the impact of chronic pain on sleep, work, memory and daily routines
• common misconceptions, fluctuating symptoms and the experience of masking in public
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Welcome And Why This Podcast Exists
James DunnWe acknowledge and pay our respects to the traditional custodians of the lands on which we record, and especially to those who may also be living with a disability. Welcome to another episode where we will explore a variety of non-visible disabilities, the way in which people experience their disabilities, and discover the opportunities for society to make access and inclusion improvements that benefit everyone. Hi everyone, my name is James Dunn, and I am your host. And like many of the guests on the Stunfire Conversations, I also live with disability, including myaltic encephalomyelitis, or commonly known as chronic fatigue syndrome and postural orthostatic tachycardia syndrome. On today's show, I'm joined by Adele Evans. Adele is 60 years old and lives in Wellington, New Zealand. She has lived with myalgic encephalomyelitis, previously known as CFS, since her early 20s, and developed complex regional pain syndrome, or CRPS, 15 years ago after she was in an accident at a school fair. Adele runs a support group for New Zealanders and Australians who have CRPS and is passionate about shining a light on the challenges faced by people living with the condition. Adele is also an advocate for the growth of the Sunflower Initiative in New Zealand. Adele Evans, welcome to the show.
Adele EvansHello, thank you for having me.
James DunnLook, I'm very happy to have a Kiwi on the show for the first time this season. My dad is from New Zealand and we absolutely love visiting family over there. It's a truly beautiful country, so I'm particularly happy to have you on the show today.
Adele EvansGlad to be the first.
A Gap Year And The Start Of ME
James DunnSo take us back to when you were 22 and you went on your OE or a gap year for the Aussies listening. What were your plans for that OE and when did you develop ME?
Adele EvansI was already nannying in New Zealand, and my nanny agency hooked up with a nanny agency in London. And so I went over to work, had a two-year visa, and um had a few jobs over there. But prior to going, I decided to have a flu vaccination because I would always get flues and colds and everything. Had the flu vaccination, arrived. Probably about three months in, I got quite a decent flu. Um dealt with it as best I could being in a sort of foreign country and um you know living in somebody's house and um nannying and whatnot. Um and I sort of got over it, but I always just felt tired. Um I changed jobs a few times. Um when I went over there, I was initially working with babies, and then my last job I was working with um a then seven-year-old and a 11-year-old. Um, so you know, obviously the kids were a bit more active. And I just and just having, you know, traveling and doing my OE, I just thought I was having too good a time, overdoing things. I try and slow down as much as I could. I'd throw supplements down my throat, left, right, and center, um, and just rest when I could. Really just didn't know what was going on with my body. I just thought I was overdoing things while I was traveling.
James DunnYep.
Adele EvansUm, came back to New Zealand in um 1990, and it was a family friend of my mother's who had ME, and we just started talking about it, and I sort of went tick, tick, tick, you know, all the symptoms she was saying. And I was like, oh, yeah, but I think that's what I have. Um my partner in London, now husband, came back and we moved to a small town live in in New Zealand, and that's when I started to investigate it a bit more, go into my GP, and basically we had to spend six months of just doing all the normal blood tests of thyroid and um your iron levels and everything else, just to rule out you know, nothing else was going on. And they always just came back negative. And then I just sort of got a blase comment of, oh well, yes, you know, you've got M E. And that was it. And I was sort of sent on my merry way. Um and I was just like, well, great that I've got a diagnosis and I've sort of got a box that I fit into, but that's I I knew nothing about it, didn't know how to handle it or or what to do. I was just sort of left guessing, basically.
James DunnYeah, that's hard. And what was known about Emmy at that time? Obviously, that's a few years ago, and what advice did doctors give you?
Adele EvansWell, as I said, my my my GP wasn't really interested in it. Um so no advice from her at that stage. And so the family friend, because she'd had more dealings with it, put me in touch with the ANZ ME Society. And so I started to get some more information from her there. And in that time frame, we moved from Lavin to Wellington. And again, I had to then find another GP. And basically I just went around GP shopping.
James DunnYeah.
Adele EvansAnd I would ring up the medical centres and ask, is there anyone there who understands ME or is willing to work with someone with ME? And you know, and I did, I found a fantastic GP. She openly said, Look, I don't know about Emmy, but I'm willing to work with you. And that's what we did for the entire time I had her until she recently retired just a couple of years ago, so 30 years. So if I found research papers or um anything else like that, I would bring them to her. She would have a look at it, we'd go over it together. She'd just say, Oh, I'm not happy with you doing that, or yeah, no, that's fine, go for it. And it was just hit and miss. And obviously, what works for one person doesn't work for everybody, you know, you've got to find your own path.
James DunnYeah.
Adele EvansSo sort of try out a few things. Um, but my probably best thing that I did, but took me quite a few years to learn, was to actually say no. So you know, asked to go out, just ask to go out. Yeah. Um even just to events or anything like that, which I would always go to because I didn't want to put anybody out. Um, and then you know, you pay for it afterwards because you're just so tired and you'd crash and burn afterwards. So it was learning to say no, um, and also learning to listen to my body. And that took a number of years to learn. And once I I sort of mastered that, um I I felt more comfortable with it. Um I would always have a sleep in the afternoon. I still do have a sleep in the afternoon. Um, I always used to have always the very chronic fatigue and the aches and pains in the muscles and the joints, but that then changed to insomnia. So now I might only get five hours sleep if I'm really lucky, but it's usually about four hours sleep a night.
James DunnYep.
Adele EvansUm, but then you know I'll have a sleep in the afternoon sort of to catch up.
James DunnYour experience there of the early stages and and dealing with the medical profession, I think are actually pretty similar to what a lot of ex people experience these days, too. Um, with some medical practitioners not really having really strong knowledge about the condition. That's certainly been my experience. But I think your approach there is fantastic where you inquired with different medical surgeries about the people there and whether they did have the knowledge and whether they had the interest. Because really, as you say, the interest is the key, and certainly that's my experience with ME is somebody um helping me who is just really keen to try and um help along the journey, and that's a big part of it. So that's a really good approach for those people listening, not just with ME, but other conditions where they're not perhaps as known as well as others. So your approach there's fantastic. And also I can relate to your experience with the no principle, um, which yeah, it does take quite a few years to learn, but is a key management technique. So I'm sure that's had benefit too. So you're obviously pretty young when this started. What impact did it have on your life day to day? You mentioned around the resting, but in terms of your overall life and your career, what impact did it have?
Adele EvansWhen when I came back from London and we were in Lebanon, I was only working really part-time. And then we came to Wellington, and um, I decided I wanted to start my own nanny agency, so I was going to start my own business. Also knowing that if I had my own business, I could work around my fatigue.
James DunnYeah.
Adele EvansUm that was the aim. And so started it up. Um got pregnant with my first child, with my first daughter, and had read all the research, and um 75% of women would get better with pregnant and during pregnancy. Uh unfortunately, I was in the 25%. So um that wasn't obviously great, but I was still keeping the business going. Um, and also I had to have a C-section because I just didn't have the energy to go through labor.
James DunnYep.
Adele EvansUm, and my GP backed me up 100% on that. She was just absolutely fantastic.
James DunnRight.
Adele EvansUm also we found with the ME I was having reactions to anesthetics and um pain medication. So unfortunately, with the C section, the epidural didn't work. So that was exciting. Um but you know, baby was born and then she, you know, she was fine and and everything. Um I always knew that I wanted my my children quite close together, so I got pregnant again within about um just on six months. Again, I was in that 25% of um not not being great, and also I then also had a toddler still trying to keep the business going, and I was just breaking even with the business, and because of the whole ME um pregnancy, and already had had a C-section under a specialist, I was with that specialist again, and he basically said, What do you want? You do you want a baby or a business? So I had to let the business go um and focus on my how. Um and you know, that's that's what I did. Um again, you know, went through another C section and I decided that with basically two kids under two um and the ME that I needed to cope as best as I could. Um use all my my nanny in schools that I'd had over the years and um listening to my body and learning to say no and get through it as best I could. And I was going to um stay home with them up until school age.
James DunnYeah.
Adele EvansAnd um, that's what I did. You know, obviously they went to craze and whatnot, but I was very lucky with my first first um daughter, she she slept fantastically, my second one not so much. So that wasn't great, but we we worked through it. Um and yeah, so whenever the kids slept, I slept and we just got through it.
James DunnYeah. It must have been really challenging to have to make that decision around the business or the family. On reflection, do you think that was uh the right advice from from that doctor? Do you think it it was possible to do both?
Adele EvansUm back on a yes, it was the right direc um decision.
James DunnYep.
Adele EvansUm yeah, just just knowing sort of I didn't completely collapse or anything like that or really, you know, go downhill with it. And that's because I stopped and just focused on obviously I was pregnant, I had to look after myself and I was looking after a child, I'm looking after a house and everything within the house. So you've got all that and com that going on. So yeah, I just had to step back and obviously, yeah, because I'd been looking into ME and reading up on more, probably more the alternative side, sort of supplements and whatnot, that then piqued my interest into another career choice that I went into later on down the track when the kids went back to school. Well, my youngest one started school. So it was a good decision.
James DunnYeah, that's great. And certainly I can relate to that as well, having to stop the career that I had just not being compatible with having ME. And I wasn't, you know, raising you know very young children like you were. I have teenage boys or a little bit younger than that at the time. And it's just very hard to do the basics. I can certainly relate to that. So stopping work unfortunately is a a reality for a lot of people with ME. And particularly in your case, having to you know raise a really young family, that would have been incredibly challenging just on its own.
Adele EvansAnd I was like, I had a very supportive husband as well, so gotta put him in there.
James DunnAbsolutely, it makes a big difference. So you mentioned this other career that you um moved into as time went on. What was that?
Adele EvansSo when my youngest started school, I was about 40, and then um my interest had peaked into beauty therapy. So when my youngest went to school, I went to school and I studied to become a beauty therapist, um, which was great. And you know, we were the kids would come home from school and we'd all be around the table with our homework. Um, and they would quiz me for my exams, and um it was great, you know, it was fun times, and everybody would have a giggle, and I loved it, absolutely loved it.
The Accident And Aftermath
James DunnThat's great. So when you were 44, you had an accident at a school fair, which led you to develop CRPS. Can you tell us a bit about the accident, how it happened, and the initial months after it?
Adele EvansMy daughter's um school fair was on a Friday night, and um they had these battery-operated children's cars, and they were more an old style, quite heavy metal. And my youngest wanted to drive, and I was going to be the passenger, and obviously they were child-size because they were for children, and um, I'm sitting in it, and my knees are up around my chin, and she's driving around. Unfortunately, she got a bit confused with the people that were operating the car in which direction she needed to go, and she crashed into a concrete retaining wall. And where my legs were within this car, there was a metal bar that was basically running across my shin. And unbeknown to me, there was a piece of metal that was sticking out from this metal bar, and when we crashed, that piece of metal went into my shin. So obviously, I felt intense pain on the impact, but my main concern, of course, was that my daughter was okay. Um, so we got out and she was perfectly okay, and that was fine. I honestly thought I'd broken my leg, it was just such intense pain. Um my daughter ran off to play with her friends, and I just sort of felt fluid going down my legs, and it wasn't blood, it was just intestinal fluid. And I just had to keep changing that dressing basically every couple of minutes. Um my husband was still at work and was meeting us at the fair, so that was about another hour and a half before he turned up.
James DunnYep.
Adele EvansAnd so I'm trying to keep an eye on the kids while changing the dressings, and he turns up and you know, obviously, he wants to do some things with the girls. And I then I just had to call it and I said, Look, I'm sorry, we're just gonna have to go home. I I just I can't handle it anymore. And we went home and I didn't go to seek any medical treatment till the next day. Went to an after-hours clinic. Has some x-rays, there was nothing broken. And they just put another dressing on it. The um sort of seeping fluid has had stopped by then and you know, got sent home with crutches. I went to see my GP to get the trash thing checked about a week, ten days later. And they said actually you should have had stitches. Um it was too late for stitches. And they said if I'd had yeah, I needed a a compression sort of sock over the leg as well, because it was already it swelled up quite quickly. Um, and then the bruising came out, and I basically had bruising from the impact was sort of mid-shin, but I had bruising from just below knee to ankle, and it was coming out quite rapidly. That's how it was for probably a good eight weeks or so. I mean, the the sight healed, um, but the pain was just still there, and then it would it would sort of come and go. It would never really leave, but it was just always there and would come up in waves and whatnot. And then I sort of eventually went back to my GP and said, look, I've still got bruising on my leg, and this was probably six months down the track. And it's just very strange. Why do I still have this big bruise on my leg? Yeah. You know, what I thought was a bruise, and you know, it's still not hugely swollen, but it was still swollen. So that's when I got sent to um my first pain specialist and spent about um I think it was uh two and a half, three years where we trialed a lot of different medications um for pain and nothing really seemed to work for me.
Chasing Answers
Adele EvansI did ask him, I someone in passing had told me, Do you think you have CRPS? And I didn't know what it was. So I looked into it and uh again, same with M E. I went, oh tick, tick, tick seems to fit. And I remember asking the specialist, do I have the pain specialist, do I have this? And he goes, No, you have RST, which was the old term for CRPS, which I can't pronounce it quite properly.
James DunnUm sounds like it's good. We've got the new term.
Adele EvansYeah. Google it. But when all the medication wasn't working for me, um I had to go through a three-hour assessment to go on to a new medication. And this was done through um, we have a thing called ACC here, which is Accident Corporation, uh, Accident Conversation Corporation. And that so we we can't sue anybody in New Zealand. So if you have an injury, you go to ACC and make a claim and they will help. Back in the day, they used to fully cover um physios and whatnot, and now they've part fund. So um ACC wanted to me to go through a three hour assessment to get this new medication. I had to see a GP, a psychologist, and a physio. And so I went in thinking I was gonna have to go in for a real battle. Um saw the GP first. I was having a um know a a bad day. Um didn't want anything touching my leg. I spoke to him barely five minutes and he just turned around and said, oh you have complex regional pain syndrome. And I was like, wow, that's fantastic. Great. Let's go. Let's let's get some treatment and let's cure me. Oh skew thing. Yeah. Unfortunately the new medication didn't help, but I mean it was just great to get a diagnosis again.
James DunnJust having a a a name to put against what you're experiencing is pretty important and does help, doesn't it? And there's some relief as part of that as well that you finally found some answers. But then as you continue on the journey, I guess it it gets frustrating because you you can't find those solutions. It sounds like there was some relief for the diagnosis, but did you also find that a little bit scary because you realized it could be long term or were you still at that point thinking there were solutions?
Adele EvansUm what I was reading was a bit scary. Um and I was hoping as with I mean I think everybody does when they have any sort of condition you you're looking for that magic pill.
James DunnYeah.
Adele EvansUm and the magic pill treatment something that's just going to take it all away and um I really hoped that it was going to work and yeah as I said unfortunately it didn't. I had been learning some skills I think from my ME days and I know I when I spoke to the psychologist um and I said about my ME and I said that I always said that ME was never going to define who I was and she said that's great. That's a fantastic mindset to have because that will make you take you far with dealing with CRPS. I found that when I was working as a beauty therapist that I could switch my brain off pain wise. I could focus on my clients and give them 100% and do whatever I had to do clean up my workstation drive home and everything you know I was driving home and the the pain was starting to come and I was just let me get home let me get home as soon as I'd get home walk in the door basically take off my work clothes get on my PJs would be like BAM I was like oh there we go so yeah I'd learn my distraction techniques to get me through so for some of our listeners who are not familiar with CRPS they might be wondering what's the difference between CRPS and typical pain that we all experience from time to time for various reasons.
What CRPS Pain Feels Like
Adele EvansIs it the intensity is it the duration both other things so CRPS is classified as um one of the most severe chronic pain conditions known there's a thing called the McGill pain scale and that goes from zero which is no pain up to 50 and CRPS sits at around 4748. Wow so it's higher than um cancer pain is higher than having a um finger um ampute amputated with no anesthetic so um it's fairly up there the changes that you'll see physically would be as I said when I saw like bruising so you'll have skin colouring changes to your skin and that can be anywhere from a mottly yellowy red right up to the black.
James DunnOkay.
Adele EvansAnd temperature changes to your to whatever body part that's affected and it's usually limbs but it can be internal as well. Sensitivity to touch and that's clothing, bedding, footwear, gloves, but even um holding hands with someone a hug from someone just is can just be it this hurts it's just way too much. Swelling sweating you can have hair and nail different growth differences and the pain is just intense burning pain for me that's the only way I can explain it. But other people can have and I sometimes I'll get it um it's with the temperature change it's cold and but it's cold burning pain. And you can have muscle spasms and twitching barometric pressure I can tell when the weather's going to change because it will hit my you know my leg will tell me. Wow yeah okay but even if I'm on the couch and my husband walks past me he'll disturb the airflow around me. Yeah and that's enough to set up pain for me.
James DunnWow so it it creates a a lot of pretty extreme sensitivities to a whole range of things. Yeah and so what impact does that have on your daily activities?
Adele EvansIt must be significant particular on Sundays It is because it's such a roller coaster and so frustrating because your pain can change hour to hour and day to day so what you did an hour ago or yesterday you might not be able to do.
James DunnYeah.
Adele EvansSo that's you know put a a mind game on you. Yeah and then you've got to deal with the medication and some of this it's I mean everybody's on different medication but some of it's can really um mess with your brain um and again bring on fatigue. So just functioning can be really hard. So for me personally I wouldn't take any of my medication during the day with my girls because that was the only way that I was able to be in a somewhat um functional pattern that I you know I had to get them to school. I had to you know pack them up from school after school activities. I had to work um I started doing you know things around the house and you know cooking cleaning you know things like that. So I would hang off as long as I could until the end of the day to then take my pain medication because it would just you know completely wipe me out. So that was my way of of trying to get through it day to day but you're just forever juggling because in pre-planning if if you've got a big event coming up you're thinking okay that's happening in two weeks or four weeks time and you're backtracking what do I have to do to be okay by that time period? Yeah. And um conserving your energy even thinking I mean like you know if it's a wedding what am I going to wear um is that going to brush against my leg and be you know sent up set set me off so you there's just so many things going through your head that you're always trying to sort that out. But because you're then trying to conserve energy it can become quite isolating as well because you're trying to cut yourself off to conserve your energy. You've got to find that balance.
Misunderstandings Masking And Money Impacts
James DunnYeah you mentioned some pretty key words there the juggling one is a key one I think people with a lot of different conditions face, don't they, on a on a daily basis around the medications because they do often have quite a big impact and those trade-offs of pain for better cognitive function, it's it's hard. And as you said you over time you just work out what you think is the best balance but it's never a great outcome. It's just the best outcome available. So our Mythbuster question which we ask every episode so for you what do people who don't live with CRPS often misunderstand about the condition do you think?
Adele EvansUm I think it's um number one just how actually painful it is.
James DunnYeah.
Adele EvansUm and that flares can happen just so quickly without any warning but also that it can spread so if you have it starting like left side left knee it could go all down your leg or it could pop over to the right side. Yep. Doesn't happen for everybody but it can happen. Um and some days we might use mobility A's and some days we don't so obviously that's confusing to people.
James DunnYep.
Adele EvansUm dealing with brain fog is just absolutely horrendous and trying to explain brain fog to somebody um can be I'm having a bit of it right now. Yeah which is obviously you know you you can't find the words that you that you want and and you can forget things straight away after you've been told something or you're always reading questions uh reading something over and over again.
James DunnYep.
Adele EvansSo you know that's that's really hard. But also I know family and friends can be really well meaning and want to help and maybe suggest things but if they don't fully understand the condition you know going out for a walk or going for a you know going to the pool or eating a green diet isn't going to help us. It's it's just the end of struggles I think that we have all the time but also how much it impacts our income as well because obviously um a lot of people then end up having to give up their jobs or cut back their hours. So again like with my ME I you know I really enjoyed that business. So we're giving up our dreams and our goals and jobs that we love because we can become quite unriable employees. Yeah and that's you know how we you know we suffer but how much we grieve giving up our dream jobs but we've got to learn the new me, the new us and that's really hard to deal with.
James DunnYeah and that definitely takes some time and I can certainly relate to that after stopping my career in conventional work. It takes a long time to adjust to that and adjusting your expectations around what you can do and and trying to work within those. But you had some great insights there around some of the misconceptions I think you know the fluctuating symptoms as you said must be really challenging and challenging in relationships with other people but also a lot of the symptoms that you get that are beyond pain. I mean pain's in the title of the of the condition but it's so much more than that by the sound of it.
Adele EvansIt is um I don't know how to answer that one actually um it's it's the sort of mind games you play with yourself I suppose because having a plaster intensifies the pain but um here in New Zealand for us to call an ambulance and go to the hospital is quite difficult because the hospital can't really offer us any help. But also when you get to the hospital and you're trying to offer ask ask for help with pain they think that we're drug seekers so and then that gets put on your on your medical records and obviously that's extremely hard to to deal with later.
James DunnYeah.
Adele EvansBut in regards to masking um I suppose it's just um I think anyone that has chronic pain masks it at some point um and you're just trying to show your best self but obviously what you're seeing is what I'm presenting and it's not what's going on inside. But again if if um for me I I can't stand still if I'm having a flare because that's more painful so I will pace. But you might notice people would lean against a wall or lean against furniture or find that empty chair and go sit down because they can do that and still then continue. Or they'll scroll in their phones as distraction or yeah whatever way they can get through it to help mainly more in peop more in public people would mask than they would in their private lives.
James DunnYeah absolutely and I think masking is a pretty significant aspect of quite a few conditions including ME as well yes definitely definitely you you you want to do things you want to like with my children you know if they had a sports day or they had the end of year concert I loved being involved in that I used to do all the makeup for the end of year concert and there was no way that I wasn't going to be there.
Adele EvansSo I would go there and do it but then you you'd you'd paper it I'd crash and burn afterwards. Yep um but again with a lot of the medication my girls can now tell me oh remember when we did such and such or you did such and such I have no memory of that and that's to me is that kills me because I've lost memories. Yeah.
Pain Somnia And The Sleep Spiral
James DunnYou mentioned also around the sleep side of things and not getting much sleep ever really because of the pain. Can you talk more about that sort of experience?
Adele EvansSo uh we have a thing that we call pain somnia just with normal CRPS pain but then if you have enough clear which intensifies everything a hundredfold um you won't get good quality sleep but when you are intensified with pain you just can't sleep and because you can't sleep the brain is sending signals that then ramps up your pain even more so it then just goes round and round and round and you're caught into a a vicious sort of circle where you can go days or weeks without having good quality sleep um which obviously increases your brain fog and you just end up you just can't function. I think the longest that I've been completely without sleeping not even having afternoon sleeps is uh four days um and then I just collapsed at the end of that.
James DunnYeah.
Adele EvansSo it's not great to deal with.
James DunnNo sleep is so important and as you say has such a huge impact on your life when you don't get enough or enough quality sleep so that sounds like a big part of the condition, the big challenge.
Adele EvansWell you know well obviously while you're sleeping your body is is doing so many things in healing and stuff so you need it.
Purpose Identity And Finding Routine
James DunnSo how has CIPS affected your sense of purpose and identity um as I said with when I was diagnosed with ME um I decided that that I wouldn't let ME define who I was and that I was more than just a person with an ME.
Adele EvansUm and my purpose back then was I had my kids and my husband and and whatnot and then when I got CRPS and after talking to that psychologist again she sort of you know backed up to still have that mindset. So again it was no you know I'm and everyone's different and I know that there's people in my group who are completely different but for me personally it was just like okay for me to get through um this is what I have to do. So you know growing up my girls were always my purpose you know I've kind of get up and and do things for them while I was working obviously you know my job um and that sort of kept me going but um now my kids have grown I still needed to find something so for me it's routine so I go to a hydrotherapy call five days a week and it's good social interaction and you know so I've met some great people down there yeah and some great friends so that's great but basically when it comes down to you know the I didn't choose this life and so for me to carry on as I said ME didn't define who I was CRP CRPS won't define who I am because I'm so many more things than CRPS. Yeah um and when it comes down to I choose a life full of you know hope and joy and love and I choose that CRPS won't define who I am.
James DunnThat's great. It's a really good way of looking at things.
Adele EvansYeah thank you but as I said for the support group that I run on social media I asked people in my support group for their feedback on that question. And I also used to run a support group for ME as well um and they came back and I completely can completely understand that because going back to reading the life that you once had um you're having to give up your dream job or whatnot I mean marriages can break down because of CRPS. So some people you know are bedbound because of CRPS. So they find that they're sort of a shell of what they were and very isolated. They might talk to people online but to physically see somebody um it might if they're lucky enough to get support with the carers in the house um other than that it's near near impossible that they're not physically talking to people so um for those people it it's very difficult.
James DunnYeah absolutely and it sounds like over time with both CRPS and ME and obviously many other conditions you really have to sort of redefine what a successful happy life looks like and and even what a good day looks like. Exactly and you gotta must cherish those days too yeah absolutely I think you sounds like you do that very well. So do you think there's been strengths that you've developed as a result of having CIPS that you didn't realise you had?
Adele EvansI've always been stubborn probably more stubborn all my family would say that. I've learned to stand up for myself more. Yeah because you have to you have to fight so much the you know the government agencies or ACC here in New Zealand to get support. And it it's a bit of a postcode lottery um some people are able to get you know great help and and some people aren't unfortunately um and unfortunately what treatments that are available overseas aren't available here in New Zealand and I think also somewhat in Australia as well. So it's fine Finding your voice and and trying to get the support that you know you're entitled to. Um it can be an uphill battle. And sometimes it's do I have the strength to deal with that? And I can't remember what that saying is, but you know, sometimes it's like, well, I think I'll conserve my energy and yeah, do something else and we'll we'll choose to fight that battle another day.
James DunnYeah, absolutely. Choose your battles. And I think it sounds like, yeah, you've become a stronger self-advocate, but also through the work that you're doing with some of the groups you've had advocating for others as well, because you can obviously see the challenges that they go through. So I'm sure that's a strength you've developed.
World CRPS Day And Orange Landmarks
James DunnSo I understand that World C RPS Day is on the first Monday in November, which this year is on the 2nd of November, and we're hoping that this podcast will be released around about that day. Can you tell us a bit about what happens on this day and what it's trying to achieve?
Adele EvansSo it started in America in 2014, is my understanding. And so they everybody in different cities, towns, um, villages overseas, and you know, UK, things like that, will ask their little local councils if they can light up a building, a monument, a fountain, a bridge, orange if they have the orange if they have colored lights for those buildings. And orange is CRPS's colour, which represents the burning pain that we experience. So on the first Monday of each November, so it changes each year. So rough we we try to do the that Monday, but some people um can get the you know, the days either side. We try and light up as many buildings as monuments and monuments orange as we can to spread awareness.
James DunnThat's a great concept. Um I'll definitely be looking out on that uh day for any orange buildings.
Adele EvansBut it's there's quite a few in Australia that are happening, and yeah, a few here in New Zealand too. So it's great.
Sunflower Lanyard And Better Travel Support
James DunnThat's fantastic. So the sunflower, when did you first discover it and what does it mean to you?
Adele EvansI came across it on Facebook back in um 2020, and I can't even remember where it was. I think uh it just popped up on my timeline and um my airport was trialing having the sunflower lanyard and so I looked into it and um obviously we were in in the in the midst of COVID at that stage, so I grabbed one um got sent to me and I was see um usually British programs where people would be wearing the the lanyard.
James DunnYep.
Adele EvansAnd so um I knew a bit about it um of how it was used over there. But um, yeah, all I all my understanding was here in New Zealand there was that it was going to be for airports and flying. So yeah, no, I grabbed one in 2020, and I think the first time I used it would have been um probably maybe late 2020 or 2021.
James DunnAnd do you wear it all the time or just in certain environments or situations?
Adele EvansUm I always use it when I I fly.
James DunnYep.
Adele EvansUm and the first flight didn't go too great because there were a lot not a lot of people were trained, but I've had fantastic um every time support every time since then.
James DunnYep.
Adele EvansUm during COVID um I was wearing it to the supermarket one day because um I also had a mask exemption card and I had attached that to my sunflower lanyard. And I remember going into the supermarket and I was waiting for the backlash of not wearing a mask. And the manager of the supermarket said, I don't care what card you've got on around your neck, but looked at the sunflower lanyard and said, I'll take that over at the card you're wearing. And because I support the sunflowers lanyard, which was fantastic.
James DunnYeah, that's great. That's huge recognition.
Adele EvansYeah. I just um would like it to be as recognized as it is in the UK, more so. I mean, it's coming up in in New Zealand. There's certain um like events buildings um and businesses and everything that support it, but it would be great to see it more for public transport.
James DunnYep.
Adele EvansUm, government buildings, um, things like that too, you know, and even just I know I think one shopping mall recognizes it, but yeah. I think it's how you know any sort of illness was maybe you know, back 20, 30 years ago, it's it's slowly building here. Um we'll get there in the end. It's it's it'll be good to to push it a bit more so that's it's more widely recognized.
James DunnYeah, it definitely takes time and its origins are in uh the airport environment and transportation, but it's grown so much from there to all sorts of environments, sporting environments, but also workplaces, even workplaces that aren't public-facing, just to help the people who are within that workplace. So its breadth has definitely extended a lot, particularly over the last five years. And I know that we're bringing on sunflower members in New Zealand all the time. So yeah, it is getting there and will continue to to grow. And obviously, the more members there are, the more people who know about it and recognize it, and then the experience for people who wear it will continue to improve. W why do you think symbols like the sunflower matter so much for people with non-visible disabilities?
Adele EvansUm how it says on on the sunflower website, it's it's just a quiet little um looking for. Reminder or a symbol to people who are trained into it that people who are wearing the sunflower lanyard just might require a little bit of you know extra assistance or a little bit more time.
James DunnYep.
Adele EvansOr um if they need to have a quiet space. So you know, we don't need to continuously have to, you know, explain ourselves or explain that you know, yes, you know, when I've traveled, I I will have wheelchair assistance. But if I'm not in the wheelchair and I'm just sitting in a chair, I've still got my lanyard on. Or if I'm sitting in the plane, I've got my lanyard on. Um and you know, the cabin crew will always come up to me and they would just always say, now you just sing out if you need any extra help, which has been absolutely fantastic.
James DunnYeah, that's great. I think you've hit the nail on the head with one of the real benefits, which is not having to explain yourself, because that is really challenging, can be exhausting physically and and emotionally. So not that, but just getting that help. But also you touched on there how little effort's actually required from the people who do help. It's just that offer to help in in some way, but the huge impact it has on the wearer by someone saying to you, just let us know if you need any help. So I think that's one of its great strengths as well. So one of our podcast community questions now, one of our listeners has asked about people's experience when traveling on planes and keen to understand what your experience has been with that.
Adele EvansWith it's been great. So, as I said, you know, the cabin crew will come up. Well, one yeah, you you get to go on um first, and um, so you can get settled into the plane. Yep. Um I know when I was checking in um in Toronger with um just I was wearing the lanyard and I went to check in and realized that my seat was a seat that was going to aggravate my leg. Um, and so I just went out and I hadn't even opened my mouth to say something, and they just obviously saw the lanyard and they said, How can we help you? Is there anything that you require? And I was just fantastic. So that was great, and it was you know able able to be done. And again on the the Taranga to Wellington flight, there's a a uh cabin crew lady who is absolutely fantastic. Um, I do that flight quite a bit because my dad lives in Tauranga. Um, so she's been just absolutely wonderful. But yeah, it's just the added assistance, just knowing that they're there to help if required.
What Genuine Inclusion Looks Like
James DunnYeah, that's definitely the strength of the initiative. And it's great to hear you've had good experiences, and that's certainly been my experiences too in airports and and planes. So glad to hear that you're also having positive experiences. So, in addition to the sunflower, what do you think genuine inclusion looks like for someone who lives with chronic pain?
Adele EvansUm people are actually listening to you.
James DunnYep.
Adele EvansUm they might not fully understand what you're going through on a day-to-day basis, but if they're willing to just listen and try and understand and not question or challenge you in any way, yeah, um, goes such a long way. Um simple things like if you notice somebody at a gathering and everybody's standing up, but somebody's sitting down. Get down to their level. Um because you know they might find it difficult to be able to stand up. So you just get down to their level and sit with them and talk with them because you know they might be feeling isolated as well because everybody's standing up.
James DunnYeah.
Adele EvansOr if there's you know a function with food and you offer to to bring them some food. So yeah, just be kind.
James DunnBe kind, listening, meeting people where they are. Yeah, there's some great tips there. And they're really easy things to do. Very good. They have a big impact on people. So yeah, that's
Faster Diagnosis And Better Treatment Access
James Dunngreat. So always our final question. In addition to those examples you've already provided, um, and you've given us a a lot today, Dale, what what's one small change that individuals or organizations could make tomorrow to improve the lives of people with CRPS or any other life-changing non-visible illness?
Adele EvansIt would be great if medical professionals could recognize that more quickly so that we can get treatment. Um you start treatment much, much faster. Um I mean CRPS has has been around for donkeys years. But and it's I find it very much like how ME was when I was first diagnosed with ME. Some doctors just, you know, wouldn't recognize it, didn't believe in ME, you know, going back 40 years. Um, same with CRPS. Um some medical professionals have never heard of it. Um my physio um has physio students come in um three or four times a year, and she always makes me talk to them. I'm not allowed to tell them what I have, but I have to tell them my symptoms and they have to figure out what I've got. Okay. And it's always great. Um, they will come back, they know you've got chronic pain, and I'll go, Well, yeah, you're close. Um, and then I'll ask them, you know, have you had any um training? Or did you have, you know, has there has been any discussion on CRPS? Um sometimes I think that student might have been away the day that he discussed it, and some students would go, oh, you know, we had half a day. Um you know, that's interesting. But you know, if more medical professionals recognized it and as I said, there so that we can maybe fast track some some of the treatment options that are available in New Zealand, but make the treatment options that are available outside of New Zealand available here would be fantastic.
James DunnYeah.
Adele EvansUm mainly like ketamine infusions, we don't really get that here in New Zealand and that would just be absolutely fantastic. Um and then as I said with the ACC uh they always seem to have um play like a lane tactics with their paperwork with them accepting CRPS if it has been come through from a medical professional, which again slows down us having access to any help that is available, mobility aid that are available. So it would be great if they were um more accommodating.
James DunnYeah, absolutely. I think you spot on there, early diagnosis and acceptance of that diagnosis is just really key to getting on the best possible treatment or management path you can as early as possible, which is just going to make a big difference to people's lives. So yeah, that's great. Well, thank you so much, Adele, for coming on the show today. It's been great to hear your disability journey with ME and CRPS. And I know I've learned a lot, and I'm sure many of our podcast community have as well. All the best for your CRPS advocacy work, including on World CRPS Day, and thank you for your support of the Sunfire Initiative in New Zealand.
Adele EvansThank you, James, and thank you for having me on today.
How To Stay Involved And Closing
James DunnThank you for joining us for another Sunfire Conversation. Please keep the conversation going via our website, hdsunflower.com forward slash AU, on Facebook at Hidden DisabilitiesANZ, on Instagram at hidden disabilities underscore ANZ, and on LinkedIn at hidden disabilities sunflower-Australia and New Zealand. You can also visit our website if your organisation or an organisation you know is interested in becoming a Sunflower member. If you'd like to submit a question for one of our guests to answer on a future episode, please direct messages on socials or email us at hts events at Baileyhouse. That's B-A-Y-L-E-Y-H-O-U-S E dot org.au. Please help, have patience, show kindness to others, and join us again soon. Making the invisible visible with the hidden disabilities on flower.