TRANSCRIPTS

EPISODE SEVEN - NIKI JONES - BIKE RIDER, HORSE LOVER AND ADVOCATE FOR BETTER PAIN MANAGEMENT - KEEP CURIOUS

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Frankie Dewar  0:00  
It's day 13 of the trip we are in. Are we actually in Langorse?

Niki  0:04  
No we're in Llanfihangel Tal-y-llyn which is next door to langorse.

Frankie Dewar  0:09  
Lanfi-

Niki  0:09  
Llanfihangel Tal-y-llyn 

Frankie Dewar  0:16  
Ah Hello, and welcome to the extraordinary ordinary womxn podcast, sharing life's adventures. My name is Frankie. And this is the podcast where I interview extraordinary ordinary womxn and non binary folk, as part of a 3000 kilometers psycho, around England, Wales and Scotland. interviewing people out there myself to say that you don't just have to do it last year. You'll hear all about their adventures, and what they get up to, as well as their answers to my big life questions. Like what does authenticity mean? Did you have a clear sense of direction through life? And what advice would you give to your younger self? extraordinary people, we have made it to Wales. This is Episode Six, where I speak to the incredible storyteller Nikki things. She had me in completely in chance when I met her and first heard her story. And then again, when it came to edit it This episode was recorded in her Conservatory. There's not much background noise, but you can hear her gorgeous dog shuffling on the safer sniffing and generally making dark noises. But every time you hear one, just remember these dog noises and made with a lot of love. So for people that don't know you at all, could you give me like a snapshot of who you are and what you do?

Niki  1:57  
Well, I'm 48 49. I used to. I used to work in London for the British horse racing borders, but British horse racing authority they are now as a research executive. So pretty decent job. ran a small livery yard as well and played hard and worked very hard. And in two, I said, Come home back to Wales for Christmas. And I suddenly developed trigeminal neuralgia, which is a bit of facial pain, nerve pain in the face, and it literally happened one second. Like I was sitting there watching the tv with my gran, and it was like somebody put the catle prod beside my head. And it knocked me over the pain, and it never went. So that was after that was 17 years of operations and pain relief, ridiculous amounts of drugs that are really, really horrible and tough and stuff, which is why I'm bad. You know, after a certain sort of nine months I Well, I had a first operation after quite after about four months of it. But I went back to work and they made me redundant, literally pretty much as I walked through to the door. No, they're warning nothing, just bang go. So I was left in London with no job. Pretty unwell with two horses. Wow. Okay, so it's a bit stressful So, so I ended up getting the pain came back, I walked straight into another I mean, I just walked into a bookies and got a job there just to, you know, keep the money coming in. But it wasn't what I really wanted to do. And the pain came back very quickly after that, probably from the shock. And so I came back to Wales, bought my horses with me, and fell down a very, very deep dark hole of pain and operations and drugs and stuff. And with life, just trundled along. And then two years ago, I found an app called curable, which is just a self management app really teaching you how to manage pain in a different way. more modern neuroscience which has moved on because thing is when you're in pain and you and you've sort of fallen out of the system, and they just see you once a year and just throw more drugs at you. You don't get told what and what's changed. And so much has changed about pain. Now their knowledge is different. So when I realized that it really set the foundation to the meters have basically realized that I couldn't wait somebody else to kill me. I had to do it myself.

Frankie Dewar  5:01  
And so what does that app look like waht do you do?

Niki  5:04  
Oh, it's a fabulous little app. It's basically hold your hand it's but it's a whole program is education, brain retraining sort of works on the idea of neuroplasticity, you can train your brain to not be so hyper, hyper aware of the pain, lots of meditation, and visualization, and lots of journaling, a lot of writing. It's very psychologically base. So that's good. And I mean, I'm, I'm not one to sort of just stick to one thing. So I don't get very deep into the whole pure neuroscience of it all. And as an Australian chat neuroscientist called Laura Mosley, who is absolutely awesome, and anybody who ever feels pain should watch his YouTube videos, because it's just changed your whole concept of pain and what it is. He's brilliant. And also, for the last sort of 10 years, I've been doing a lot of work with animal behaviorism training, training the dogs and the horse, horses, in particular, with positive reinforcement, learning about learning theory and about how to classically use classical conditioning. And so I realized that the pain is actually, in a lot of ways, a lot of it is classically conditioned, it's an expectation, basically, your brain has made these links. And with trigeminal neuralgia, it part of the diagnosis is that it's triggered by random events, like a soft touch on your face would usually try to trigger extraordinary pain, wind on your face, rain on your face, nothing I spent, you know, 17 years covered up completely. So I can go out with that multitude of scarves and masks and stuff and glasses, so nothing touch them, you know, no wind or surprising Touch, touch my face. And deconditioned all of those that wasn't through the app that was just from my own knowledge of how conditioning works, and, you know, shaping plans to do just use graded exposure. So start off small. So I mean, I reduce my pain by 95%. Or Wow. And, you know, I completely turn things around completely is amazing, and very quickly.

Frankie Dewar  7:16  
And how does that impact your day to day life?

Niki  7:20  
Well, it was, it was brilliant, because I you know, I mean, I got a lot of chronic fatigue as well, because and, you know, still a lot of drugs, but just the whole, whole you fall into and I couldn't drive in and now I can drive again to do the horses have literally stuck it down, throw hay at them. And I do one thing a day. So be like, if I could go to town for half an hour, that would be it. I'd be in bed for the rest of the day. I mean, I fluctuate throughout the year, so some years would be better than others and stuff. But my worst, I was really disabled. And it's, it's hard almost to two years is such a short time, but it's a long time. And you know, forgetting how I couldn't shower to my teacher was, you know, horrendous talking. I would never have done an interview or something because you're talking with so painful, soulless things. It's really, really bizarre. And so I had this sort of miraculous thing. So it started what I could barely walk a kilometer. And again, just treat myself like as a horse, you know, off with an injury and just built up really slowly. The trouble is because it was so wonderful. Suddenly not being in pain. I didn't need the drugs I was on anymore. It's annoying pain. And it's partly my fault because overenthusiastic but the NHS basically didn't take any notice and just said, Oh, yeah, taper off them. And fentanyl is fentanyl is that it's over 20 times more powerful than morphine. I mean, this is in everything patch form and in a sort of lollipop Buechel form, and I tapered it too fast. Okay, and dug myself into withdrawal. And at the same time, my GP decided because one of the other drugs I'd been on with got expensive, he basically bullied me to change to another one, even though I didn't want to, and it's a trap and old fashioned antidepressant to try cyclic stop me overnight, lowered the dose. And I know he knew I was sensitive to them. Because I'd had trouble with this drug before but so I was in the jewel withdrawal. Anyway, so I had happened while my parents were were suddenly you know, I live with golden things were amazing. You know, I was like, this is just fantastic, you know, and I went, and I just woke up one day, I just felt terrible. Like, it was it's the weirdest feeling was like a it stop alien. Like, the worst grief but at the same time you feel nothing. Like, you know, I mean, It was the longer it went on, the more dangerous it felt. This went on for about two weeks. And I was like, What is this? What is this? This is rent universe, nobody here and I've done all the right things, you know, it's like I'm meditating and I'm walking, and I'm going outside and I'm doing all these good things to help myself feel better, you know what's going on? And obviously, with my age, you know, the been perimenopausal. And, you know, is it that atom, I made one of those weird decisions when I'd been off the the Buechel, fentanyl was the good sort of four or five weeks at this point, and I was cutting the patch down, so isn't about patches, probably about 60 micrograms from from down from 75,000, quite a low, much lower dose and a half, I had been pretty much half my dose of this drug. And for some reason, I took one of the beautiful pills one night, just for no reason, it was just, I mean, honestly, I was in a state at this point. And I woke up at three o'clock feeling normal, and I was like, This is withdrawal. And it just was, and I was I was googling away, you know, like, what this isn't. And I realized that there was such a thing, as you know, prolonged withdrawal from opioids, and that, you know, all this stuff like nobody ever told me, you know, me, you shouldn't be tapering off these drugs unsupported, it's really serious. And so I rocked up at the doctor's the next day for an emergency appointment. And the doctor, the GP setup, I didn't know you decide what to do. Which I'm still extremely angry. All he had to do is read the pharmacist, all he had to do, but they would have hospitalized me at that point, which, you know, swings around bounce might not have been the best thing. So I just didn't want this to happen to anybody else. So I went home reinstated. Not quite onto my highest days, but onto a much higher dose, at which point and I'm still my own. I could have overdosed at that point, most people would have done I've got a pretty good tolerance for opioids, thankfully have been on for so many years. But that that's the thing that really upsets me that the doctor,

Niki  12:17  
you know, sitting there telling him I'm suicidal is one thing, it was that that's a choice he made to not do anything about that. That's a judgment call. Maybe I didn't say the right things. And I probably wouldn't have wanted him to do anything anyway. But to let me go home and reinstate onto a very dangerous stroke is negligent in my opinion. And I am talking to the trust about it. No, no. So two years ago now, so it's not any kind of uniform or complaint just because I didn't have the emotionalcapacity to do that. 

Frankie Dewar  12:53  
Wow. And so then where are you on that journey? Now, two years later,

Niki  12:58  
two years later, I'm still have had very patchy support. It took me nine months to force a pathway to help they sent me to they tried to send my rehab consultants brilliant, but she's in a different trust, because we don't actually have a hospital in Paris, you see, so everything's very scattered. And she was trying to get me into places in Newport. No, go. You have to look in Paris. But there isn't the support in Paris. She was trying palliative care. She was trying everywhere, and you'd get odd bits of advice. But nothing in all the advice was only other drugs. And I at this point, I'm like, I'm not taking another drug. And not going to take another drug that is another dependence forming drug as I just barreled through it and it and it was tough. It was tough. And I forced a pathway at a local painter Nick. And that actually turned really sour with the psychologist hosting. We didn't really click but I'm now seeing another one there. So I'm much more hopeful. But lockdown was actually really good for me because they were very rigid in how I had to taper. So that you must do this, you must do this and I just wasn't suiting me and they wouldn't listen to me saying I can't tolerate that. So lockdown was brilliant, because almost like right I'll do an incremental taper and I was literally getting the razor blades out and shaving tiny amounts of the pills and it works so much better. Because every time I take if I take a big step down, it all comes back with if I go slowly, it's a much smoother curve and I just get, you know, depress them a little bit sort of grumpy and a bit irritable and things ache. I don't get the really the rage. You know I'm not you know, my animals my life and I'm you know, you literally have this over overwhelming urge to, you know, damage them. And it's just horrific. I basically have a thing, a low grade thing called apathy, Asia, which is something you get from a lot of drugs, but mainly antidepressants and antipsychotics and opioids, but it's in intense restlessness, where you literally feel like insights want to climb outside, it's extremely and is intolerable. And it comes with psychological symptoms, fear, rage, depression, and dysphoria and everything as well. So ever sort of mild version, and it was a lot that it's like having a panic attack all the time. And I've never had any kind of anxiety or panic attacks. And I, it took me a while to recognize what this was and develop coping mechanisms. But basically, that's where again, curable, has, you know, saved me because I had a structure, I had coping mechanisms, I had something to hold on to and know that I could help myself and that I could not if I not focusing on the symptoms too much, and not engaging with them. I could manage life better. But it's still been very hard. But I'm learning a hell of a lot,

Frankie Dewar  16:14  
say sounds incredibly hard.

Niki  16:17  
It's hard. It's not the hardest thing was the golden things are so much better, and then suddenly not back. Yeah. And it wasn't me. You know, it's just too, you know, a couple of other people just just slipping through the net, and slipping through the system and people making decisions. And screwing up your life. And it's that injustice, I suppose. So. I'm doing an awful lot of sort of patient advocacy work now on Twitter and going with some amazing people and doing some amazing stuff. So again, it's all I'm very determined. I don't want it to happen to anybody else. But if it has happened to have happened to me, that this portfolio, some good,

Frankie Dewar  17:04  
yes. So if there is someone else in a similar position to where you were, why advice would you give them?

Niki  17:12  
What if they abandon like, Don't taper fast? Definitely. The official advice is always, you know, talk to medical professional before you take it and I definitely would, but I would, I would always say do your due diligence. So, you know, go on the internet. There are some really good, especially an antidepressant system really good laypeople stuff now in a compass, surviving antidepressants. They really know their stuff. And they're starting to be used by professionals as a, you know, a data set and advice. So, go slow. You get there faster by going slow.

Frankie Dewar  17:56  
What an incredible story. And how is your relationship with your horses and riding? Do you still ride?

Niki  18:05  
I don't I don't write well, yeah. So I came back to Wales with my old pony fizz. And my youngster who I bought from the fall Cirrus is the Connemara pony. He was supposed to be my show pony. I've done a lot of showing county level with with physical affection, but with friends in Connemara, showing, so this is what I wanted him to be my mentor and more than ponies. And we were going to do lots of jumping and just do everything. Yeah, I was kind of marked as a real good all rounders. And because I was working so hard, you didn't want a big horse that needed a lot of work. I wanted something I could give a couple of weeks off to and then grab that the field and he'd still be not stupid. Of course it all that all went wrong, because then I got it when he was two. And then just after my first operation, he went off with a friend to be broken, who broke come in, I'd started him but she carried on. And just when he got back, and I started riding again, he injured himself in the field, put a massive hole in one of his ligaments, his back leg, so he had to have nine months in stable. Do now but that was so I actually had to stay in London for longer than I wanted to because of him because he couldn't travel. So I brought him back here and it was fine. He had a year off and he's not had touchwood he's not had a moment's problem with it. So that was that was fine. But he he actually has really severe sweetish which is an allergy to midges so he can never be a show pony. So things never went how they were but he's, you know, he's kept me sane for 2021 now, you know, and he's kept me sane and he's wonderful and he's taught me a lot and he's the reason I went into animal behaviorism because because I was so weak He's quite Trixie, he discovered that he didn't have to hang around with me because I couldn't control him. So I had to look at a different way of controlling either I could get harder, harsher and harsher bits and gadgets on him to stop him. But you still to cause the pain to stop him, you still have to have strength, and I didn't have the strength. And I don't want to cause and I was pain. So I had to look at a completely different way of working, which was to use positive reinforcement. And I got together with a local animal behaviorist in swanzey, who is incredible, and she just changed our lives. It made me realize that writing isn't actually the be all and end all partly because I have no facilities. I've no school I've never safe to ride. And he's not easy. And I had quite a few sort of hair raising incidents out on the road with him. Basically lost mine. I've got to go, I've lost my nerve with him. And it's he's 21 What's the point? You know, he's happy playing in the field. So we'll carry on do that. And I sit on him every now and again. But it's very much just something that happens. And since I got better, I kind of I've been finding. With cycling I found that the cycling is you can go further than on a horse you get all the benefits of being on a horse with the being in nature and everything. Yes, there's not the in out but I'm quite enjoying just being me. And just having me to worry about I've been very much using the cycling as me time. It's a reframe. I reframe pretty much everything. So did that. So he's great, but I lost my little Shetland pony quite recently, which is pretty tough. It just in the state of lockdown. It was a bit of a he was offered that 18 months of on and off. And we had a great summer with him because he had bad feet. And I again I did walking with Him. So we started from you know, just doing 100 meters even and worked in that cell. He was doing sort of five kilometers and we're having a great time. But we couldn't find out what was wrong with him. And he just got Ella and Ella and it just he crashed again in October and it just with his quality of life. You can't keep doing it. And so luckily Jenny, my my trainer, came up with a good son, I ended up with the Marin follow straight off the Gabba marshes. They're completely wild. They're keeping serious company and I've managed to put headcollar on the phone when she lets me touch her all over now. And so she's going off to be with her brother soon, and learn to be a proper Nikki. She's a year old now. And the mom is staying. She's still I can't touch her. She's still pretty well, but she's getting more used to me.

Frankie Dewar  22:51  
And you started talking about the cycling. We spoke about it before as well. But when did you start like

Niki  22:57  
I started cycling, literally at the start of lockdown. What happened this is I started this, this amazing pilot study for people with chronic conditions called muddy care. So a local woman who has a chronic condition itself, he started this up and it's a outdoor rehabilitation course basically, she's got some amazing ideas, and I'm really hoping to work out but we were the pilot study and there were six of us. And the first thing they did with us was surfing. 

Niki  23:25  
Amazing. It was like insane. 

Frit Sarita Tam  23:28  
And it was it was in September. And it was I mean honestly, the first first day we did it, I ran out to the sea. And I just hugged her  and I just said that, that I feel so free. I it's amazing. Because even though it's doing a lot better, and I was still struggling with withdrawal, but it's so hard to you want to do these things, but getting over those hurdles of actually doing and knowing how would I go surfing and Oh, it was incredible. And it was it we did with them? survivability. I think they called in Caswell Bay and they absolutely amazing. They have helped disabled people, sir. So we started doing that so that the we did walking as well as the next module. And then the module we started just before locked down was cycling, but with electric bikes. Oh. And it was amazing. Some of the girls are have, you know, really serious fatigue issues and to see them running or Yes, flying around on these electric bikes. Totally free. It was just brilliant. And I really enjoyed it and we only did I think we did three now I think we needed to two sessions with the both really enjoyed it. And then of course, you know COVID happened so we had to stop. And I suspect I really enjoyed that really enjoyed that. And I literally dug up my sister's old mountain bike from the stable and you know the gears don't what didn't work and the brakes were binding but I was like ."NO" I'm going to reframe this in a psychological reframe. Bike reframe and I'm going to enjoy this regardless, you know, and I just cracked on and of course you know, that hills everywhere, and I was really, you know, is really struggling, so I just made a decision at the beginning that I'm just going to do to start off with five minutes or five, six kilometers and just see how I go. And I would cycle to a feeling in my body. So whenever I got to that point, I would stop walk. And that's what I do. And some days it's you go further up the hill and others, it really depends. And like I said, when your central nervous system sort of in bit of freefall and your brain is your brain misinterprets a lot of data as danger by pain or, you know, nasty symptoms, and you don't like, you know, you panic when the nasty sensors come. So, to do that, it's fine. And, and we're very good at competing against ourselves as well like, making it pushing myself and then you know, so I did that. And I do videos of all this there on the internet mismeasured waffling about that stuff, but it's really, really fun and, and I was just completely friends. This is bike time was bike time, it was mindful time. So no, you know, no music in my ear or anything like this, this was me time on the bike, really mindful, sustain his present moment as much as I could. And being in my body, you know, because a lot of my recovery has been about learning to love my body again. You know, despite the pain, it gets me and working around that being back in it. And that's been a big part. I mean, you know, I did ballet classes and stuff, you know, it's been amazing yoga. So yeah, so I did this, and I did LA Times in March, April, May, June. So for those months, I did really well. And I got up to 30 kilometers. Meaning and that was going out sort of Max. So every other day, probably, I do it. And I'm tapering during this time as well. So there were a few points in the tape, especially when I was doing big step downs, where I was physically very vulnerable. And if I did it, I suffer. So, you know, it was very much I quite a big flare up in July of the facial pain, which is, you know, just to be expected and I actually factored in flare ups and setbacks into Mitel pattern, but very much setting in the neural pathway for bike time is bike time, and it's about pure enjoyment. And it's

Niki  27:37  
been a puddle up on the mountain. Just waiting, it was just so funny. I'm going out you see now my if I get a headache, because as well as the tn I get these sort of neuralgic headaches, which are just extraordinary, which now are just basically mild migraines. And I won't take any drugs for it because the you started job myself is some a trip down to bought these headaches. So now mostly, if I start getting a headache, I jump on the bike. And I and I ride and usually after five, eight kilometers.

Frankie Dewar  28:18  
That's amazing.

Niki  28:20  
I talk to people, you know, on the cureable Facebook page and who have you know, migraines and stuff, and they just can't believe that. And I mean, it's just like, no, they can't be bad. This is no, they're not bad. But this is on the back of a two year process of working up to that it's not something you can just do.

Frankie Dewar  28:35  
Yeah, you're not you've not suffered with migraines, severe migraines for years and years and just

Niki  28:40  
decided to go out with them. No, not at all. It's an absolute because you've got to train the brain in the right way. Not to panic. And the trouble is with pain is that its purpose is to make us fear. Because that's what its purpose is. And fear and pain are very closely connected in the brain, and they exacerbate each other. So trying to control the pain, the fear is actually the best thing you can do for pain. Take away a lot of suffering that way. But it takes an enormous amount of courage. Some of the bravest people I know are not elite athletes, they are people with chronic conditions, who get up every day and carry on regardless and they find ways of managing. That's the real bravery in this world. If you asked me

Frankie Dewar  29:30  
I'd agree and actually one of my questions later on is going to be what do you think bravery is so we're gonna Yeah, we're gonna come straight round. That's amazing. And so if there was anyone else that was also trying to manage chronic pain, but wanted to start getting into the outdoors, or if there is anyone who wanted to help someone with chronic pain, try and get into the outdoors. What sort of steps can they take? What advice could you give

Niki  29:57  
them powers getting in touch with muddy care but It would be wonderful if there were more things like that. I think it's an awesome idea. I'd start slow. I think don't overwhelm yourself. I think that's the important thing. So I get into my, I think it's getting into a mindset is the first thing. So curiosity. So even if it's just sitting in a green space and learning about, it's finding a hook, I suppose. You know, so, you know, like, finding out about trees or something like that, and just sort of segwaying in and I started with walking. And I think that's a really good place to start. And finding, you know, footpaths and places like that, but right, look around and find. Just find out what's out there, I suppose, isn't it? I mean, this is the thing. I mean, I found such a joy in cycling. And that sort of surprised me. And I thought if I joined walking, but compared to cycling, it's it's a different level. And I just think you kind of have to try things, don't you to figure out what's gonna like, with a light your boat that you know, that you fire, because there's a lot out there. But I'm also very aware that you know, when I lived in London, you've got a whole different type of opportunity than ran here, I'm very lucky round here. Because you know, you, you can get in the car and drive to a mountain and be completely out of touch with everybody in very few minutes. So you can even if you're not that mobile, you can still get to some amazing places where generosity are not always that easy. So I think it's about being quite creative.

Frankie Dewar  31:45  
And I really like the idea is that about, like, maybe even like looking at the trees, because then that's something that you can do outside and whatever sort of proportions you're capable to do when you feel like doing but you can also then still do it inside if you're not feeling absolutely

Niki  32:01  
yet. Yeah, it's making you get I mean, this, I love. I mean, that's what I miss so much about not being out and not riding is not not engaging with nature and the animals and everything. Because you mean with a horse in the animals don't treat you like a person. If you're on a horse as well, so you get to see more, but yeah, I really, I hadn't quite realized how much I missed it. I think it's good. I mean, I with Medicare, that we did a beach clean and stuff like that, and just, there's so much out there if you can, if you can sort of find the access to it. But if you do on your own, but I'm over the internet. I mean, we were just rockpooling one day, and I mean, it's just like with apps, it's just the world's your oyster narrows just like Well, what's this? I've no idea. And you know, three people have found out what it is before you can blink because they've gone. Yeah, exactly. So you know, there's no excuse for not being curious these days. I love that.

Frankie Dewar  33:03  
Absolutely love that. So how do you think your journey has shaped who you are? Now,

Niki  33:09  
that's an interesting one. Because, in a lot of ways, I'm sure I've changed completely in the two years that the withdrawal has had much more of an effect on me than the pain has, in a lot of ways. It's been, it literally felt like I shattered into pieces. And I was like, just pieces like on the sea floating. And I'm just literally me just trying to pull all the pieces back together. And up, you know, I I feel like I'm going to be completely different how I started. I don't want to call it broken Buddhism is broken. But tangles in a know I'm not because I don't like the concept of people being broken because I don't think anybody's broken. And so it's like I broke within sight of me, you know? So because a lot of the times when you have you know depression or something it's off times you can sort of plan you know what happened to help you help get you there. You know, I mean I used to you know, low level depression because I was in pain all the time you know, it was a causative factor basically. And with this it was just so purely chemical, and, and unnatural. The psychologist I didn't get off with on with he he didn't want to seem to want me to own it. Really refuse to do that. I call it sessile to withdraw. So diffuse from it, but that doesn't mean that I'm not owning it. Because how I respond to it is me is mine. But I find it easy to go well, this is subtle. So, you know, it's a reason, but it certainly made me more empathetic. It's made me more wanting to hear other people's stories and made me want to help other people. And also, that my experience doesn't invalidate anybody else's experience, nor does their experience invalidate mine. But we all matter. It's like, I recovered from pain. That means that a lot of people can recover from pain, but how they do it is not necessarily going to be my journey. Yeah, and recovery looks different to have even, you know, I thought it would be, it's interesting. I've changed a lot in the last two years. And I'm still changing, and I'm still learning and I'm still growing. And

Niki  35:58  
that's quite exciting.

Frankie Dewar  36:01  
I wonder where you'll be in two years time. Have you got quite supportive good people around you?

Niki  36:12  
My parents are awesome, my family's great, it's still been incredibly lonely. Because however supportive people are nobody, you know, they're never see the tip of the iceberg. And in some ways, in some ways, this has been about actually me, learning to survive on with me, without anybody else in it. It's slightly paradoxical. But I'm incredibly lucky, I have a hugely supportive family, I'm in an extremely privileged position. I mean, living in this place, being very highly supported by my family, I, you know, I don't work on benefits, but the mildest you can complain, I was able to have an awful lot of pressure taken off me, which would have really hurt my situation more or not. And that's, that's what I'm fighting for. I'm like, I say to people, you know, this happened to be what, what if somebody couldn't do the research? I've done? What if they didn't have the privileges? I've done? What would it be like them? For me? What would it be like for them? But yeah, love is about finding the strength within yourself not not to call it resiliency, because resiliency has got some strange conditions, more buoyancy.bouncing back.

Frankie Dewar  37:38  
How do you find that

Niki  37:40  
self compassion. That is the root of everything, self compassion, which is not to going, Oh, I'm going to curl up on the sofa and eat no chocolate cake. I mean, sometimes it might. But it's actually about, you know, doing what's best for yourself. And, you know, watching the whole negative self talk and stuff. It's incredibly, it's really confronting self compassion. For a lot of people. We had this I did this great course. One good thing the NHS has done is a group course compassionate, resilient. But it it was very compassion focused therapy, but they did this thing where, because self compassion is focusing that compassion on yourself is so confronting, and makes you feel very vulnerable. You sort of imagine a perfect nurturer is cool, but it's, you know, this is not an actual person, because it's somebody who's not got any, you know, it's not a real person. So there's, there's no feelings, this person, and it's pure, unconditional love from you. I mean, I, I like spirit guides and stuff. So that to me, it's just another spirit guide, you know, but it's imagining this person who's just there in life, just to love you. And it's a segue between being able to do it for yourself, basically. And that's great. And you do that during meditation, or just, it just becomes something that's there. And again, it just shifts your thinking, it reminds you in it. It's all things like, you know, when you drop something, you go your car, why did you do that? Well, no, don't talk to yourself like that. You wouldn't say that to somebody else. You Oh, don't worry, it's fine. You know, mistakes happen. When you shift your thinking and you're speaking to yourself, like that doesn't make a big difference.

Frankie Dewar  39:37  
You start to form habits, I guess, if you're in the habit of doing, it's hard to break it and then when you start to make

Niki  39:44  
all these neural pathways are really important. And again, with the bike again, you know, I found out because I did this 30 miles cycle with this really, really high things on that and I was quite bad withdrawal and I overdid it, and I really didn't knackered and I was coming home and it was like, and I really, I was really worried that I broken the joy, you know that I ruined things because I don't have done it and I felt horrible. And I got back on that bike. And straightaway it was just like straight back into that habit of gratitude. Because I always go I'm so grateful that my body lets me do this. Now my brain lets me do it. It's just being free and out on that bike. And it is just so solid now and, and so grateful for that. The gratitude, that's another one I do. I mean, that's how we got hills, these dad do gratitude body scans. So big hill, right. I'm grateful for my toes and grateful for the heels and grateful for me ankles, and I literally go up through the body. As I'm going up the hill, I gets you up a third more Hill. And then if you don't do it,

Frankie Dewar  40:54  
that's a good you just reminded me about when myself and my girlfriend started cycling in lockdown. And she wasn't very good on the hills. And I've done a lot of trail running. So I've got a lot of mental things, you and I know all my games that I play to get to the top. Yeah, once you're at the top of that. So I had all of these and she did a really big ride. And I think we'd ever done it. And I was like, we should just start shouting what we're grateful for. that she'd have to shout it back. Louder. Things like grateful.

Frankie Dewar  41:30  
Yeah. Grateful for women's rights!.

Niki  41:38  
I mean, because gratitude is another habit. It's something you can learn. Doing, you know, gratitude practice is such an amazing thing. Even if it's just I'm grateful that I can breathe today. You know, this will be something. Yes, it's brilliant. Oh, it's good when you've got somebody to bounce it off.

Frankie Dewar  41:56  
Yeah, definitely.

Frankie Dewar  41:57  
And what is one thing that you know about yourself now that you wish you'd known earlier?

Niki  42:04  
I think it's that time, I think it's about, time I think it's that time is less of a problem than you think it will be, you know, it goes faster, and you end up moving, you move faster than you think you do as well. I think that's it, because it's very easy, isn't it to get stuck in the moment, although I'm very into present moment stuff, but it's very easy to get into Oh, my God, this is awful. And it's gonna last forever. Think things don't things always change. It's always changing. So we can move on, things are always good. And then they get worse, again, really good.

Niki  42:50  
But it doesn't last forever. Either way nothing does.

Frankie Dewar  42:53  
And I've got a section that's kind of a little bit around emotions are like really intrigued to hear answers for it. And then I've got one that's kind of around women. And then we finish off with a couple of questions for like advice for other people. And then some bigger questions, and then sort of like,

Frankie Dewar  43:09  
questions coming off to it. And

Frankie Dewar  43:14  
I've been asking everybody about their authentic selves. And what do you think authentic self means?

Niki  43:23  
That's fascinating. Because I, I'm a lot of my problem the last two years, I thought I lost my authentic self, and literally rebuilding my authentic self. So my answer is I'm still finding out. Which is interesting at my age. And, but I do think it's very important to find out who that authentic self is, and to be true to that authentic self. And to like that authentic self. And I think that's very important. And to not care if other people don't like that. Sometimes the hard work very hard, because, you know, a lot of us are people pleasers, and, you know, we desperately want to be liked, and it's hard. I find it I'm a bit like, I was feeling a little bit. This highlight to me, why don't you like me, and what did I do wrong? You know, and, and it's like, it's not usually about you at all, but one of the biggest symptoms of withdrawal and I still struggle with it. That's some like, feeling of loneliness, not being likable. So it throws you straight back to that, you know, eight year old child who was bullied at school, you know, for no reason. And so it's hard. It's been hard. It's been sort of a vulnerable time, but I'm lucky I've got some magnificent friends who are very good at

Niki  44:54  
being nice to me.

Frankie Dewar  44:56  
And this going back to something you said earlier, what do you think bravery is?

Niki  45:03  
Yeah. I think bravery is the quiet stuff that people don't celebrate enough. It's the bravery of carrying on in it's the little, this little sort of triggers stalking suffering. Especially people with, you know, chronic conditions. And, and I don't think people go anywhere near enough support in the world which is a travesty. especially women.

Frankie Dewar  45:48  
Would you describe yourself as brave?

Niki  45:56  
Yeah.

Frankie Dewar  45:58  
And for the people listening, it's a tattoo that says brave,

Niki  46:03  
will die underneath as well. And thenext one says take little steps.

Frankie Dewar  46:09  
And they both so colorful and loud and beautiful.

Unknown Speaker  46:13  
These are all my sox's with my little you. You can move mountains andthem into little positive affirmations me? meaning for me that was impossible with the in crossed out. Yeah. When stay strong.

Niki  46:35  
conquer the fear.

Frankie Dewar  46:36  
Why did you get these from 

Niki  46:38  
soxs?

Niki  46:40  
shatter the darkness. And these ones are progress not perfection, and tiny victories. So yeah, so find them online. And these are these ones are new, but these ones are pretty ancient now and

Frankie Dewar  46:56  
they're so cool. I know so many people that I would like to buy.

Niki  47:02  
And they donate to a water charity or something as well. So

Frankie Dewar  47:07  
amazing. I can ask tonight before I leave, like make a note of what they are on my phone and then I'm gonna say back when I do finally come and like to

Frankie Dewar  47:19  
plug back to them. Yeah,

Niki  47:21  
no, I love them because they're that you know, my tattoos have always been a basically an affirmation, you know, a reminder and I'm not allowed to have more my torso. Because I have a brain stimulator is literally electrodes on the surface of my brain over the motor cortex. And then the wire goes down to the battery pack in my abdomen and interface in. Like if you had a deep brain stimulation, like people with Parkinson's have it to the tremor. And then in that case, the electrodes actually go into the brain. This is actually just on the top. They don't know how it works, but it's supposedly so you know, when you bang your knee and you give it a rub, it's they think it might be something that interferes with the pain signals. I had that done in oh nine, any other game use of 30% pain relief, but it's still on just crumbling away, and I will at some point, we'll tapers off and see how we get on without it. But But yeah, yeah, I I'm not allowed to have any tattoos on my torso because of the stem. And it's like when I go to the dentist, if I have any work that involves blood, basically, I have to have an IV on to Bertie's beforehand. Just to make sure there's no chance of infection. So if I cut my scalp or anything, it could be considered an infection got into the stomach to good news, but otherwise not it doesn't bother me. It's just annoying. Like when we were surfing, it was just that we just have to think about it as adaption. So they gave me an inflatable sort of death to wear, which it didn't actually cover the weather, this factory is covered enough, so I could protect it. And just when I got on the board, I'd have to get on from one side rather than the other side. And I learned that when the waves came, I had to turn so my left side was facing the wave rather than my right side because it was rather painful when it didn't. And yoga I have to wear john, you know that you know the pants that keep you stuck in. If I wear those giant pants that's much better. Otherwise the box can flop around because I've lost way too much weight you see as well. And so it's this new sort of fat helping to keep it steady at the moment.

Frankie Dewar  49:46  
Things like big ways you adapt.

Niki  49:49  
You have to don't you that's what adaptive die is. It's not about dying at all. It's about not dying, isn't it? It's about adapting and, you know, carrying on

Niki  50:01  
What was the question?

Frankie Dewar  50:02  
The question was about bravery. And so I was gonna go on and say, so I asked you, if you if you would describe yourself as brave, I wonder if you could tell us a time when you've been brave? Or

Niki  50:17  
is it this one thing I want to say is that I used to put an awful lot of straw by being brave, and it became a very large part of my identity. Often, when you're in pain, pain becomes part of your identity. And just some people, it's the paint itself. For me, it was how brave I was coping with pain. It became a really important ominous, toxic part of my psyche. So that was why I had that tattoo but and because it's a throwback into my past, but it's come to me something different. Now. bravery is something quieter to me now. It's something steadier, it's something more boring, more day to day, it's all about, it's about the courage that you need to let go. That the courage you need to not do to not just to know when to say know when to pull back, and the courage that it takes to be compassionate to yourself. I'm still working on it, to be honest. I'm still working on it. And we change our opinions all the way through life. Don't wait as we experience and we grow. But it definitely means something a lot different to me now than it did a few years ago.

Niki  51:37  
Which is interesting.

Frankie Dewar  51:39  
That's really interesting.

Niki  51:45  
Because I find I'm quite fascinated with like Everest and mountain climbing subjects. I've never done any climbing because I was told when I was 16 I did whiplash injury, and I was told that my muscles are most accurately, never do contact sports. And I must never climb because like my muscles wouldn't cope or don't fall off, which is all so looks that and I really want to try climbing. I'm horrible with heights, but I really want to try climbing and I was just working my way up to going up to the Climbing Center, which is just across the mountain there. But COVID Caves though I haven't been determined to try B fascinates me because I think it's actually probably in my mind stupidity rather than encourage it's a stripped stretch. I mean, I love what reading like, you know, into thin air and beyond, you know, for each one you know, I mean that's insane. absolutely crazy stuff. That's courage. But to me it's not with Harry's climbing the mountain is not not the courage part the courage part was like you know, when he fallen down onto the ice shelf and the person dierences the courage not them not wanting to do it. I think that's where I am I think it's the perseverance is where I can courage lies then.

Frankie Dewar  53:01  
And what do you think happiness feels like

Niki  53:03  
there's different types of happiness and you know, that's the thing happiness can be a quiet thing. It can be this striking me dog or it can be that you know, that feeling of being out on the bike and being centered in yourself and free so you know, it's there's so many parts and but I think that happiness is as much as anything it's stopping long enough to notice.

Frankie Dewar  53:38  
I love that completely. And sometimes it's so easy to get just caught up in what you're doing and not a test.

Niki  53:47  
Yeah, and unfortunately we have to go through the shit to know to notice when we're getting to know what happiness is, you know when we take things for granted and it's good not to it's natural to take these for granted but it's also good to you know for stop perfect every little that's why I like doing you know like a gratitude practice and stuff you know because it forces you to actually stop and look doesn't it?

Frankie Dewar  54:12  
Yeah, absolutely it in two ways. Firstly, I feel like for me it when I actually sit down and like what am i grateful for that's happened today and look back but then also as I'm going through my day, then I'm like, Ah, this is something that I'm going to use later.

Niki  54:25  
Yeah. Yeah, absolutely. And it's fun because I do it I do a little like little post it note or miss with bullet points on I don't like to must do you know X amount I just do just before I go to bed and it's lovely looking back, you know at the end of the year and see how many little bits of paper you got and things and you know and some days it's a bit sad because the factory obviously had to struggle to find the thing is that it is definitely habit. The more you do it, the easier it is to find things Great.

Frankie Dewar  55:01  
Um, and I won't give you much longer because I realized just after five, but do you have any female role models?

Niki  55:13  
Yes, no, I don't I'm not a great one for hero worship. But if I hear a worshiper, you know, that kind of thing that I'm always much more bowled over by, you know, me. I mean, meeting sprinter Sacra was my best thing. He's a racehorse, you know. But I think some people are amazing. I, I do that. But I also don't like to get disappointed. So I don't want to get too caught up on personalities. But I think there are some people doing amazing things. And a lot of people who impress me are normal people doing normal things. I think people sort of normal people pushed into extraordinary positions. I mean, I'm not reading Michelle Obama's book that really, I found that really interesting. I mean, in some ways, that was a hugely disappointing time, because, you know, it was really felt like the world is at your feet, and then suddenly, it just kind of didn't happen. But I can't help thinking what if roles have been reversed? And she'd been because maybe things would have been? I think we're in a lucky time. I think we've got some awesome women out there. I mean, I'd love watching to see what Alexandria acacio Cortez gets up to I mean, she's pretty awesome. You know, we've got some pretty good female politicians as well. I think. I think I'm very disappointed too. But Layla Miranda, and when the Lib Dem thing, cuz that would have been a lot better. No, I think I sort of find my I've tried to sort of appreciate people's good points wherever I find them. And then my grandmom I mean, my family, my role models, and a lot of ways, you know, I've got some awesome sisters and female relatives. So you know,

Niki  57:11  
pretty awesome.

Frankie Dewar  57:14  
And so my last question, or technically, second last is, what advice would you give to your younger self?

Niki  57:23  
It's ironic, we were looking at slides last night, from 83 and 84. so I was 

Niki  57:32  
Yeah, 11.

Niki  57:36  
And younger, even. So it's my younger self is very sort of foremast. And I think the biggest thing I tell that little girl is that you don't have horses if you're a nerd. Because I just remember how mad I was and how I was just such desperation. And I do I remember that little girl a lot. And every time I sniff my boss, you know, I just bury my nose in his neck and smell it. May I go straight back to that small child and say, yeah, it'll happen. Because it meant so much to me. And I think it's, I don't know, I don't know is the thing. That's a really hard one. Because Do you feel any different to that young child? Because to me, I feel like that young child is still very much me I do feel. times weird, isn't it? It doesn't really. I'm constantly surprised. I'm 48. Especially with the last in the last 19 years, having been in sort of a form of limbo, as well as like, you know, you haven't lived yet. But it's funny looking back at those photographs last night, you know, that, you know, an 11 year old, eight year old child and you go back into into exactly those feelings and experiences. And it's stretching and dualism because you don't have experience that you get out.

Frankie Dewar  59:10  
But oh, it's real, is completely those two things like Firstly, even looking back at photos from 12 days ago, when I started this trip, and I'm just like, Wow, she has no idea

Frankie Dewar  59:22  
what was coming.

Frankie Dewar  59:24  
And then there's this other thing I remember when I was at, I was at my friend's house, and her mom had just been on a date for the first time. And she said to her, she was like, you look at adults, and you think that they feel different you'd be with their feelings aren't the same. You realize when you get older, your feelings are just as strong. You feel embarrassed, you feel excited, you feel everything.

Niki  59:48  
You just got a few better coping strategies, hopefully. I think the advice I gave is to just keep curious, keep curious. You can't go wrong. If you keep curious.

Frankie Dewar  1:00:04  
I hope you enjoyed hearing about Nikki's story as much as I did. Next week, I'll be talking to Zoe in her houseboat on the canal near Abergavenny. It's a great and joyful episode that we recorded while making pots of tea and having a huge slice of the cake. I hope you've enjoyed this episode. Please feel free to share it with a friend who you think might resonate with Nikki's story. And you can help out the community by dropping your review, rating and subscribing. It really helps other people to find the podcast. I love hearing your feedback. And I'll be posting some quotes from Nikki's episode over on the Instagram channel. We usually have conversations around things that were said in the episode, and I'd love you to join into. You can find them over at extraordinary ordinary womxn.co Until next time, keep on being extraordinary.

Transcribed by https://otter.ai