December 21, 2014 - CFS Unravelled

For Recovery Story Disclaimer, please see the main page here!Beth French’s’ Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) started at age 10 but was only diagnosed at 17 when she became bed-ridden. 4 years later she had recovered against all odds and took her recovery to the next level with her amazing athletic achievements.Ultra-marathon swimmer Beth French shares her story in this emotionally evocative interview. Being so ill that her mother had to wake her to spoon feed her took her to some of the darkest places a soul can experience and she experienced the pain of anorexic bolemia on top of her M.E.But against all odds, she went on a journey that took her to the other side of the world and an adventure that led to her recovery. We speak about the impact M.E. has on childhood and how she had to change her identity as part of her recovery.Beth French went way beyond a lifetime of dormancy and safe living – she pushed her boundaries beyond what any normal person would think possible swimming through the oceans of the world to become the first swimmer ever to complete the Scilly Island Channel as well as swimming the English and Molokai Channels.For more information about Beth French, check out her website here: https://www.bethfrench.co.uk/Please leave a comment at the bottom of the page!Below the transcript are some ponderings by Beth French about her regaining of her health from Myalgic Encephalomyelitis.Beth French ME/CFS Recovery Interview Transcript: Quick Navigation Beth French ME/CFS Recovery Interview Transcript:Beth French shares her childhood experience with ME/CFSBeth French's experience with childhood onset of ME/CFSBeth French shares her giant leap to get out of a life with ME/CFSBeth French details her ME/CFS symptoms and being wheelchair boundBeth French's unique view on exercise with ME/CFSBeth French talks about her experience with bulimia and anorexiaBeth French talks about coping with ME through self-harm including alcoholBeth French discusses forming a new identity after ME/CFSBeth French discusses the final steps in her recovery from ME/CFS : the mental sideBeth French talks about life after ME/CFS: swimming Oceans SevenBeth French explains how she dealt with ME/CFS triggersBeth French discusses leverage and determination to overcome ME/CFSBeth French Shares Her Thoughts About Overcoming Myalgic Encephalomyelitis Beth French shares her childhood experience with ME/CFSDan Neuffer: Okay. I’m very excited to speak to Beth (French) from the UK today. She’s sharing her story of recovery from ME. It’s a very powerful story, and I think it’s going to be especially valuable to those people who make those 80 percent recoveries and who are never fully confident to engage in heavy physical activity.Listen up to the interview. Towards the end, we will go into Beth’s amazing achievements. I think you’re going to be blown away by what her journey has been. So, let me welcome Beth to the recovery interview.How are you, Beth?Beth: Hello! I’m doing very well. Thank you very much indeed.Dan: Good, good. Good, good.This is actually the take two for Beth and I because we started to talk over Skype earlier, and we just got a lot of gibberish. But, Beth, you know, as we started to talk earlier, you basically said that you actually got ME at a very early age. I believe you were only ten years old, and it took seven years for you to recover.Beth: Yeah.Beth French's experience with childhood onset of ME/CFSDan: What was it like for you during those first seven years?Beth: It was really confusing. I mean, at the age of ten, I got glandular fever, and the whole of my teenage years were pretty much dogged by these physical crashes, and not having any faith in my body, so one day I’d be on, you know, playing for the school hockey team or tennis team – I was on all the different sports teams – the next day, I physically couldn’t get out of bed and I couldn’t brush my hair. I could barely open my eyes to eat.So, you know, it was incredibly confusing. The doctors were comfortable giving the diagnosis at the time. It was sort of, “Oh, she’s a typical teenager that came around with a fever. You know, she’s got a bit of a virus, but tell her to get on with it.”It wasn’t until I really crashed when I was 17 and then stuck in a wheelchair for ten months with a period of being bedridden either side of it. We changed doctors and ended up finding one who was prepared to give blood tests and, when everything came negative, I got the diagnosis. “ME is the only answer it could be after nothing.”I kind of felt vindicated and also, I mean, with the teenage years being so confusing anyway for people, the fact that I couldn’t trust my body, I couldn’t say to my friends if I’d meet them in an hour meant that I had quite a lot of not so much depression but self-doubt on a really deep level. It ended up with this dichotomy of what I felt inside knowing there was something wrong and what the world could see, you know.“Yes, I was able to play on half the sports teams for some of the time. And then, all of a sudden, I would just disappear from view.” It meant that I had almost like a split personality where I became incredibly introverted and lacked self-confidence and yet, when I could, I would overachieve, and I would push myself too hard.Dan: Yes, it’s like trying to make up for the shortcomings during the other times.Beth: Yes.Dan: You know, I think what you experienced is something that many of us experience when we have the illness, but I can only imagine that it could be even worse as a child in most ways because you’re still trying to form and identity. You don’t have the same sort of power as an adult, and you don’t really know what to make of it all.How did your parents respond?Beth: My mum had what we believe was ME before I did. She had a lot of the same symptoms, and she’s never fully recovered. She unfortunately was told also, you know, “You’re a housewife, get a hobby,” and this is a woman who had a small holding, milked the cow, and grew her own veg, and had four children. So, you know, I don’t think she really needed a hobby, but she’s never really recovered.I think, actually, partly my youth helped me because I didn’t have an adult persona invested in. So, you know, I studied – at the age of 17 – the immune system independently. I studied everything I could find on the stress factor and the immune system and how emotions affect the immune system on a scientific basis.And then, I went into any self-help books that was around ME and actually formed my own kind of view of the facts that I reacted emotionally and my immune system then came in sweeping to aid my emotional distress and actually caused me to be ill. That sort of helped me because I didn’t have an adult persona. I didn’t have a job or a career that I felt bad giving up. I didn’t have a mortgage to pay into. I didn’t pay rent. I didn’t have a relationship that was invested in for years, so I could rewrite my future, and that was actually what helped me to make the depth of full recovery that I have eventually made.Dan: Look, the field of psychoimmunology is fairly well-established these days, but I think the links are not directly made, so it’s interesting that you went down this road on your own.Can I ask, do you remember when you first had symptoms? You’re talking about it was around the age of ten. Did anything in particular happen around that time?Beth: Puberty.Dan: Puberty.Beth: Pure and simple. It really was, yeah, it happened overnight for me – puberty. I went from looking like I was ten to looking like I was 18 in about the space of six months, and I switched from primary school to secondary school at the same period, so it was just absolutely overwhelming. My body became not my own. I was living in this alien body that, all of a sudden, this virus hit – literally right at the end of primary school. I missed the sort of induction into secondary school, so it was - everything was pretty scary, so it was a heightened emotional period as well.The time that I went into the wheelchair was right after my parents split up. Their marriage ended. So, again, it was this incredible emotional period that my body had triggered an immune reaction to.Dan: Obviously, doing all that for years that you were sick – well, the first seven years – you had obviously not necessarily been on a severe emotional rollercoaster every day, I would imagine, and yet the illness still perpetuated. You obviously have made a connection between emotional well-being and the illness, but do you think that reflected your journey all the way during those teenage years?Beth: I think, any teenager – you know, can look at any teenager and say, “They are kind of on a rollercoaster every day,” but for me it was as if this split between the expectations of the world, I was supposed to be this person when actually I felt that I should be something else, and I didn’t have the tools or the personality to rebel. I wasn’t a rebellious teenager. That came, actually, when I was very, very ill – when I found a way. You know, the self-destruct button almost as my form of rebellion.So, I was supposed to be Person A that was going to university to study this, to drive forwards, and become this person. Actually, that didn’t suit me. It didn’t fit me at all, and I haven’t found a way of expressing who I was. And so, the teenage years became more and more split between I was trying to be everything to everyone. I was trying to please my teachers and my parents and society around me where, actually, I didn’t fit.Beth French shares her giant leap to get out of a life with ME/CFSWhen I was in the wheelchair, I vowed that, when I got out of the wheelchair, not only did I want to sort of grow up to help people who had no explanation for why they were feeling what they were feeling, but also I wanted to leave the country.Within the two weeks of getting out of the wheelchair, when I was just about to turn 18, I bought a ticket to go to Ireland which felt like a safe place – they were English-speaking; it was very close, if I did get ill again – for a two-week period. So, I was just giving myself a break, and actually got off the ferry and felt 100 percent lighter.I could be whoever I chose to be because nobody knew me. I actually learned sensory feedback from other people, so I could behave in a certain way and got immediate feedback from other people – whether that worked for them – so I could start to build a personality and a way of being based on how other people viewed me who didn’t have who I should be.Dan: It’s a very brave thing to do for anyone at that age, but especially somebody who’s been so ill. What did your parents say to this?Beth: They didn’t like it at all.Dan: I’d imagine!Beth: I went away for a two-week holiday and came back eight years later from the other side of the world, yeah. So, I lived abroad for eight years. My mum tended to visit once a year. You know, much so, I adore my mum. The relationship that we have and had is part and parcel of why it didn’t work for me because she’s a great mum and she was a very strong woman, but she had a very, very direct view of what I would become and how to fit in with the world. Unfortunately, I’ve thrown that out the window. It was very difficult for her to accept that I don’t function as a very English Rose woman. You know, I don’t have 2.4 kids and a mortgage and a man.Dan: Yeah.Beth: But, actually, fulfillment comes in different packages for different people. For some people, that works really well. For me, it was never going to. So, living abroad might seem brave, but it was considered cowardly at the time. I was running away from my future, and I was! I was running as fast as I could because the future didn’t look that good. I didn’t want to go back to being in a wheelchair. So, as long as I felt well, I kept going.Dan: It sounds like you ran away from someone else’s future and ran towards your own.Beth: Absolutely! I mean, it was the archetypal, you know, “I went off to find myself,” you know. Whilst the backpacking thing, you know, I ran backpacker hostels to learn what other people were doing to find themselves. That’s what I did in Ireland.On a daily basis, I met people from around the world. I learnt their life story and learnt what different kinds of support networks they had and what kind of bravery and self-confidence and insecurities they had as teenagers because they were my age, but they had completely different lives. And so, that kind of gave me not self-confidence but it actually gave me other people confidence. I learnt from other people that confidence was out there, and I could find it.Dan: Yes. Look, a lot of growing to do at an early age. How many more years was it? So, you mentioned, up to 17 you were sick, you got diagnosed, you were in the wheelchair. You managed – a year later – to get out of that wheelchair. For how many more years were you sick?Beth: I would say – okay. So, getting better and then having faith in my recovery are two separate periods.Dan: Yes.Beth: I’m still learning.Look, I would say, when I was just turning 20, when I was in Ireland, I was in Ireland for nearly two years. I would still have unhealthy periods – unhealthy episodes. The immune system didn’t crash as much. Oddly, every time I went back to my family, I would get ill. So, I went from Ireland to living in Hawaii which I couldn’t get back with my family. That’s when I discovered loving my body. I loved my body for what it could do.I started to explore what health really meant to me and started to test myself. I ended up swinging a pickaxe for a living. I planted coffee and harvested coffee for a living. I started to not get ill by pushing myself physically. I started to recognize that it was emotional stuff that made me ill.Dan: Yes.Beth: So, I would say around 20 was the last time that I had a crash.Dan: You know, basically, most of your adult life – or most of your life up until then – you’d obviously been ill.Beth: Yes.Dan: How on earth can you possibly turn around to thinking that you could become well again? Didn’t your doctors tell you the prognosis?Beth: They did, and that’s why I ran away. Then, I was in Hawaii.Dan: I love it.Beth: That was when I decided that I didn’t want to keep starting from scratch again. I was 20. I wanted to start to build a person. I studied indigenous healthcare and the training was for a year. That was the greatest thing that I’ve ever done – to say, “Right, I’m going to be well for a year.” It was physical as well. There was a lot of physical work involved in Hawaiian indigenous healthcare, so you had a lot of massage, a lot of physical work. It involved, you know, hiking into the mountains and collecting herbs and manipulating Polynesian bodies which aren’t always the smallest in the world.So, that was the bravest thing that I did – to invest that I’m going to be well for a year and study this. Actually, that was the changing of my life because the indigenous healthcare, the different way of looking at the physical body, they don’t split the emotional and physical separately. You are a walking emotional creature and your emotions run through your muscles. Therefore, to treat the muscles to treat the emotions is the same thing, and that gave me answers that meant that I felt well. I didn’t just act well. I felt well.Through that training, I came to understand that there are alternatives. You know, our classic Western medicine is brilliant in its place, but there are so many other answers.Dan: Beth, you know, I’d love to explore this in more detail, but before I will, I want to step back a moment and ask you, when you were at your worst during all those years, can you tell me what kind of symptoms you experienced and exactly what that was like?Beth French details her ME/CFS symptoms and being wheelchair boundBeth: The worst was around the period of the wheelchair. For about two months at the either end of that period, I was bedridden, so it was almost like I was in a coma sometimes, and my mum had to physically rouse me – shake me awake to spoon-feed me. The heaviness – the sort of a mercurial lead feeling in my bones, it hurt to move. I had neurologists come to visit me from the hospital to see if there were actually neural pathway problems – so she tested if there was any strength in my muscles – and they concluded that there was strength, but I wasn’t able to access it, and they couldn’t explain it.So, one of my sisters, she would sort of pick me up and hold me, and my mum would take a few steps back to see if I could walk. She described it was like a baby learning to walk and being unable to support themselves with their legs. So, you could see the concentration on my face, and not be able to put that into powering my limbs.So, the immune side of it, I had three bouts of what they believe was viral meningitis, so that comes along with incredibly high temperatures, absolute pain-racking, yeah.Dan: Where was the pain?Beth: Everywhere. Everywhere – it was in every inch of my body. I mean, you could say that the head was the worst part.Dan: Yes.Beth: But my body hurt. Everywhere hurt. My skin hurt to touch. My mum would have to put those cold damp cloths on my body to bring my temperature down. It got up to 106 which is a dangerous temperature. It would hurt to be cold and to sort of force into cold baths to try and bring my temperature down. Yeah, it was physical torture, to be honest.Dan: During the other times where, you know, it wasn’t as severe – during the years leading up to this – obviously, you had immune problems with the swollen glands and things like that.Beth: Yes.Dan: Did you have any other strange kind of symptoms – like, mental symptoms or anything?Beth: Yeah, absolutely. So, I developed bulimia with anorexic periods which had nothing to do with body image but all about control. The only thing I could control was what I put in my mouth. I mean, another strange symptom, when I was coming up taking my driving test, I would turn my head and not the steering wheel and, you know, I had to just back away from driving lessons. I would put my laundry in the fridge – moving food out of the way, walk away, and double take and think, “Oh, no, hang on a minute. That’s wrong! That’s the wrong appliance!”Dan: Yeah.Beth: And so, there would be a lot of sort of cross-confusion and neural pathway confusions as well.Dan: It’s interesting how you describe brain fog quite differently than virtually everyone I’ve spoken to, and I’m not sure if people can pick up on the difference, but it’s very clear to me that the difference is having a different framework to work with and, you know, obviously, experiencing this as a young child, it’s a different point of view. You look at it as, “Oh, that’s interesting and surprising!” as opposed to “Hey! Something is wrong with my head!”Beth: Yes! The brain fogs that other people would describe—Dan: Yeah?Beth: Yes, it was dulling but, I mean, say I’d be at school, I learned very quickly. I basically developed a photographic memory.Dan: Right.Beth: So that that’s the only way that I could get through school.Dan: Yes.Beth: Mainstream education makes me ill because I can read something, I can digest it. if I understand it, I’ll ask the questions to understand it. If I then have to repeat it, I get brain fog. That’s what I would describe as brain fog where I can’t concentrate, where it is foggy in my head. So, I learned very quickly that I would read everything through the day before a test, get through the test anxiety – which I developed – to be able to write down what I read, and be done with it, and it’s the only way that I could sort of survive.So, for me, brain fog, was enewed in the sort of education because I had to endure the education part of it. You know, I was a bit of a naughty girl in class in the sense that I would hand in my homework and then not pay attention because paying attention hurt.Dan: Yes.Beth: So, for me, the neural pathway problems were these sorts of almost comical episodes out of it. School itself was where I felt brain fog – which is the concentration, you know, the hurting in your head. For me, that was the whole education.Beth French's unique view on exercise with ME/CFSDan: Did you find – during those ten years – that exercise, especially during the first seven years until you were diagnosed, did you find that exercise had adverse effects on you?Beth: It was believed that it did, but I didn’t believe it.Dan: Right.Beth: So, I was on every sports team at school, and I could swim at quite a high level, county-level for all my sports, and I would feel absolutely brilliant doing the sports, but then I would have a crash, and everyone believed that the crash came because I’ve been active. I didn’t believe it.We were lucky enough to have a pond in our garden that my dad dug out and made a mini swimming pool. In England, if you can imagine a solar-heated swimming pool wasn’t warm, and swimming was something that I always felt better doing – whether it’s the water pressure, the cool actually helps. The cold water helped, but the movement, I felt alive in the water. It’s the only way I can describe it. It’s the time where the brain fog receded, where mind and body could actually sort of connect, and that has formed quite a huge part of my now pleasant existence.But, yes, I don’t believe that physical activity in itself – the sports – I don’t believe triggered relapses, but the pressure to perform was something. So, I went to county trials, I crashed. Now, I crashed the day before the county trials – not at the county trials. They actually gave me a second chance when I got better, and ran my little socks off, and felt brilliant. So, it wasn’t the physical activity alone that did it.Obviously, when I was in an immune-impaired state, I couldn’t run. I couldn’t perform.Dan: What would happen if you tried to do something? When a flare-up was going on?Beth: Pain – I think it’s the only way to describe it. Pain, and then I would get, like, a flu-type illness after it, but I would already feel ill before I tried to do the sport.Beth French talks about her experience with bulimia and anorexiaDan: You mentioned that there were periods of bulimia and anorexia, I think it was?Beth: Yes.Dan: What age, may I ask, did that first start?Beth: That was probably from about 8 to 12, I started to have episodes of bulimia, and they were directly to when I started, at the very beginning of an ME relapse, where I would feel just different internally. I would not feel particularly well, but I would not be having any strong symptoms. Every time I ate, I would feel evil – it’s the only way I would describe it. Food would feel evil and wrong, so I would go and make myself throw up. Purging, I would feel better. I would feel energized for a very brief period of time, and I would have episodes where that would sort of rise and fall. When the ME had actually crashed, then I was ill, and I could let my body eat. And so, it was always at the beginning of a period where I’d have a relapse. Those episodes got bigger and worse as the immune system sort of crashed, eventually.And so, when I was about 17 – let me think – so, this is just after the wheelchair – so, 17 towards 18 – that was the worst anorexic episode. I went from bulimia right the way through to not eating at all. So, about four months, yeah. That was sort of 17, yeah.Dan: Was this during the time you were bedridden?Beth: Right at the end of it.Dan: Oh, right at the end.Beth: I was getting energy in a way. It sounds odd, but it felt like, in my adult brain, that I was getting energy from not eating.Dan: Yes.Beth: And it was that sort of purging the body that felt good, and I wouldn’t advise it.Dan: No. I mean, obviously, bulimia and anorexia, it’s a whole complex other issue. Nonetheless, the aversion to food that one might link with it is something that I think many of us can actually relate to.Beth: Yes, it’s a relationship with your body at the end of the day. Food is a relationship with your body. You feed your body to make it feel better. Through ME, you have this, I mean, I ended up with body dysmorphia which kind of crawls up, creeps up every now and then, and body dysmorphia is where you feel internally completely separated from your body.So, if you look in the mirror, you see somebody totally different. You don’t recognize yourself, and I think that’s something that a lot of people with ME recognize if they’re not diagnosed with it fully – the feeling separate to your body. Your body does something that isn’t right. Your immune system is something – an entity in itself – and you kind of compartmentalize your existence from your body to your emotions to who you are as a person, who you’d like to be as a person.Beth French talks about coping with ME through self-harm including alcoholSo, that formed the basis of the anorexia and the bulimia. It was this total body dysmorphia. You know, I did self-harm for a while just to feel something other than ME, and that’s the self-destruct button, the only rebellion I had as a teenager right towards the end was alcohol. You know, the brain fog felt normal when I was drinking, so I drank.Dan: Yeah.Beth: You know, I felt normal when I was drunk because the brain fog was normal.Dan: Yes.Beth: That’s how everybody felt when they were drunk.Dan: Yes.Beth: I did a lot of sort of flailing around trying to feel normal in ME – certainly, for me.Dan: I think what you’re sharing is very insightful in terms of what it’s like for a child, and I see, you know, some distinct differences, but the other thing I guess that you’re really demonstrating is that, along with this illness, we often get a whole bunch of other issues that come along with it, and I see this all the time – everything from back issues to obviously other mental health issues. So, you know, I thank you for being very candid and sharing this so openly.It’s a pretty incredible thing to experience this. Before you share more about how you managed to turn things around against all odds, and your brave and adventurous plight – or should I say “flight” out of England – tell me, what were you thinking about your future? I mean, you know, you came across many other young people – not often as young yourself, but nonetheless young people – who had developed the illness. Most people sort of come to a point where they think they’re never going to be well again.Beth: Yes.Dan: Did you feel like that as well?Beth: Absolutely. I mean, it sort of went hand-in-hand with the end of Thatcher years, and there was a lot of talk in this country that people our age weren’t going to have pension. There wasn’t going to be retirement for people our age. Actually, it sort of made me laugh because I didn’t even though if I could get to that age.You know, suicide sometimes did seem like an option because I couldn’t imagine living – at the age of 15 to 16 – like that forever. I couldn’t do it. I just couldn’t. I wouldn’t have sustained it. It was torture. So, there wasn’t a future for me.One of the best things that happened when I was in the wheelchair, I met this alternative therapist who helped me with some of the symptoms. He said, “Actually, you need to give yourself reasons to get better, and you need to write wish lists, and it doesn’t matter how crazy they are, you need to write things that you want to do when you get better.” You know, sort of the stories of, you know, “oh, writing a ground-breaking novel” or “writing a Pulitzer prize winning journalism,” those went quite quickly. Fame and fortune aren’t what sustain you even as a teenager.The things that sort of kept me going were adventures. You know, things that I wanted to do, I wanted to build my own house, I wanted to climb a mountain, I wanted to swim with wild dolphins, I wanted to swim the English Channel, I wanted to have a baby, I wanted to be a mum. I realized, when I was getting better through my 20’s that, actually, I was ticking them off – not meaning to! By the time I got to 30, there was only one that I hadn’t done.Beth French discusses forming a new identity after ME/CFSDan: Right. Well, you know, I think what you are touching on here is a very, very important part of recovery. It’s about creating not just a compelling future, but a new identity.Beth: Yes.Dan: Because you hear many people say, “I am not my illness,” and yet we do become kind of defined by it because it’s so pervasive. It takes over every single part of your body, your suffering takes over every moment of your mind, and it becomes difficult to envisage yourself well again. I’ve said to people in the past that, you know, “if you had a magic wand that made you perfectly well instantly,” I’m not sure that they would feel well.Beth: No.Dan: Because it is such a shock, you know, and I experienced this myself too, Beth. You know, I remember when I actually was well, I still couldn’t quite envisage myself being well.Beth: Yes.Dan: You know, I was actually running down the road, jogging, you know – for, like, half an hour – and a part of me couldn’t imagine doing that even though I was actually doing it.Beth: Yes, absolutely! I think that’s where I was lucky! You know, I think that’s where being so young, I was lucky because I didn’t have this adult persona that I had to change.Dan: Yes.Beth: I could create just a new person from already sort clay. You know, although I had this weighted expectation, when I travelled abroad, I had no weighted expectation, so it literally was I had 360 degrees to create whatever I wanted to do, and I’ve learnt that, actually, that never stops.For me, I still am challenging myself to learn things. You know, I have a massive challenge ahead of me that I’ve set up for myself which, when I was a teenager, you know, considering something that’s going to take me two years of every aspect of my life to invest in would have sent me hiding under the pillow. But now, I’ve learnt that actually I can create a persona that can do that challenge, and it might only last for those two years, but actually that’s fine. I can revert to being a different me or a new me or it’s going to be a new me in two years anyway because we don’t ever stay the same.Beth French discusses the final steps in her recovery from ME/CFS : the mental sideDan: Absolutely. Absolutely.Let me go back to, I guess, many find the most exciting part – how you turn things around. You mentioned you went to Hawaii and you were doing some quite strenuous physical work.Beth: Yes.Dan: And things have been going better for you.Beth: Yes.Dan: But you were still having some relapses?Beth: So, my body – I fell in love with my body and what it could do. I didn’t have any confidence in my health. So, I had been in Hawaii for nearly three years. I went to Thailand to study indigenous healthcare over there and ended up getting more interested in the mental aspect, the psychological aspect, and the spiritual aspect, and ordained as a British monk. Not many people would expect that, but I did. I was ordained for a year and studied intensive forms of meditation, and that gave me the eyes open to the strength of the mind.What gets thrown at people with ME is that it’s all in the mind.Dan: Yes.Beth: Now, it’s not all in the mind, but your mind is your greatest weapon. At the moment, if you’re suffering, most of the time, the weapon is against you. Learning to channel your mind in your favour is the biggest weapon you have in your arsenal. The mind and the immune system are inextricably linked. Your mindset and how you feel about what you’re doing – you know, that is one of the same thing in recovery. So, learning to sit with myself, learning to accept myself, and also learning to sift through what wasn’t my voice in my head – that wasn’t me saying, “I should be this person.”The “I should…” that’s never coming from you. That always comes from somebody else. So, that was when I started to believe in myself and believe in my healthy life, and I came out of there like a whippet in the greyhound racing stock. I just absolutely came out like the clappers and wanted to explore. I then had the hunger to explore my life.Dan: Yes, something that’s been sort of taken away from you for all those years becomes all the more sweet, doesn’t it?Beth: Yes.Dan: But, before you started to go down this track of neuroimmunology, what did you think was behind your illness?Beth: Being stopped from doing what I wanted to do. I was a child still. I was a teenager, so you have urges that you don’t know where to go with. You know, they’re the urges that form your adult persona of, you know, you have a drive to read a particular book, you have a drive to hang out with a certain load of people, you have a drive to listen to certain types of music. I had those urges, and they were limited. I had a fantastic childhood, growing up in the middle of nowhere, on small holdings on farms, and I loved a lot of those aspects, but I actually wasn’t allowed to express who I was in a lot of ways.Dan: But, at that time though – sorry to interrupt you, Beth – but, at that time, when you were a child, were you thinking, “Hey, I’m about to go here and do the sporting event”? And then, suddenly, “I’m in bed and I can’t move and I’m sick and my glands are swollen.” Did you think it’s because I can’t express myself? Or were you thinking there’s a virus or there is something wrong with your inherently? Because you said, “My mum had it, so maybe there’s just something broken in me.” Did you have any of those types of thoughts?Beth: Yes, I thought I was broken. I thought I was a broken human being.Dan: Right.Beth: I blamed myself entirely. I didn’t think it was hereditary. I thought it was my fault, and I didn’t know what was my fault. I knew that I was so frustrated. Feeling frustration was something that dogged me very, very much. I turned it on my body. It was my body’s fault.It was my body’s fault. My body stopped me from doing things.Dan: Right. Okay. It’s interesting. Everyone sort of has a different perception of what’s going on, and I think it does affect how we come out of this journey.Beth: Yes.Dan: Okay. So, quite a journey. You mentioned become a mum after all. What happened from then? You started pursuing more of your physical activity and swimming?Beth: Yes.Dan: Was that the breakthrough- to really let go of this whole illness? Or for the illness to leave behind? Or do you think it was the meditation experience you had in Thailand?Beth: I think the physical side, when I was in Hawaii, falling in love with my body came from being able to be in the water every day. I have to swim with a pod of dolphins which everybody sort of talks about that’s a life-changing experience of being with dolphins. Actually, being able to be with the dolphins was a life-changing thing for me.Being able to swim and, all of a sudden, I realize I was in the water for three hours and felt fine and then could go, you know, I’d worked hard physically all day and I could swim for hours on end and feel liberated. So, I had this physical health there, the confidence and the mental health came through the meditation. So, it really was a two-part process, and having invested a year in Hawaii, I felt, “You know what? That was such an achievement, I want to invest more time,” but I didn’t know what to invest in.So, sitting and meditating and learning about myself, I then had an idea of what I wanted to do. When I came back to this country and set up my own business using indigenous forms of healthcare – the different kinds of massage, the different mindsets, the counselling, the nutrition – I’ve developed my own business. I’ve got my own business here which I’ve had now for ten years – down in the southwest of England – helping people. You know, most of the time, they come to me as a last resort. They don’t know what else to do, so it gave me the confidence to start to develop here.Coming back here also challenged whether I was well enough to live in this country with all the expectations, to go back to my family, to be a different person, to be stronger in myself, to say, “Actually, this is who I am,” and my sport has come from my need to define myself.Beth French talks about life after ME/CFS: swimming Oceans SevenDan: Yes.Beth: So, I now swim. I swam for the love of swimming. I swam for the love of the freedom, for knowing that I was better, but there was this nag in my head. I mean, I ended up having a child at the age of 30 which was another one that was going to challenge me. It was something that I’ve always wanted to experience. I always wanted to know what it was like to be a mother.Dan: Yes.Beth: So, when I had my child, I really sat down and looked at what I wanted to instil in him – you know, leaving a legacy, the cause, the values, the beliefs. For me, I never want him to experience ME. I never want him to experience that loss of self, that not being able to fulfill your potential. So, monkey see, monkey do. I realized, if I was going to teach him to fulfill his dreams, I had to show him how to do it.Dan: Absolutely.Beth: I looked at my wish of wish lists, and swimming in this channel was the only one that I haven’t done, and I love swimming, and I’d wanted to swim in the English Channel since I was a child. So, I set myself a challenge knowing that that was going to be the defining moment – whether I was well or not.As a mother, as a single mother, I had to dedicate two years of my life to physically putting myself through something that is the equivalent of climbing Mount Everest. So, yes, I booked my ticket two years ahead, and set myself the target of doing it.Dan: Fantastic! What an amazing achievement! When did you do that swim?Beth: July 2012, and I loved it!Dan: Fantastic! Fantastic! Look, congratulations! I mean, I think, you know, going from being so ill with ME for so long and being able to do something like that and come out the other end, I think, you know, it challenges everyone’s beliefs in what’s possible in recovery.Beth: Absolutely. What is recovery? Is recovery enough just to have a full-time job and be able to pay a mortgage? Because, for me, being a teenager at that time and having ME so badly, that was never going to be enough. It was never going to be enough to survive because I could have survived, but that to me wasn’t life, and that is my teenage mindset still, and I cling to it. My childhood mindset – a life of dormancy was never going to be enough for me. The personality that I developed to push through ME means that, yes, I can swim the English channel and I can push myself to swim channels that nobody’s ever swam before which I did earlier this year. So, the drive of my life is not to push myself to the point of breaking, but it’s actually to revel in the fact that I can push myself beyond what anybody thought somebody could do, and I’m fine. I’m within my comfort zone which is now so vast – my comfort zone. It’s lovely. I can play in it. My life is now a plaything, and I enjoy life now.Dan: Look, I think, you know, if you’ve had life kind of taken away from you, and even experienced some dark moments where you question the value of it, to be able to really engage in life in any form – let alone to do such amazing things as you have done – I think is a wonderful and very sweet experience. I’m not sure that people can really appreciate it until they actually experience that.Beth: Yes.Dan: I mean, I used to hear those sort of clichés before – you know, from people who had near-death experiences or whatever – and you sort of go, “Yeah, okay.” But when you actually experience it, it’s a different thing.Beth: Yes, absolutely.Dan: It’s funny then things that I found enjoyable when I had recovered. Sometimes, they were the simplest things – you know, the simplest things.During your time in Hawaii, I guess you were still having moments as you were developing a resilience in your recovery – moments where you had some setbacks, some slight relapses. Tell me, what were they triggered by in Hawaii? What was your Achilles heel?Beth French explains how she dealt with ME/CFS triggersBeth: Usually, contact with my family. It sounds horrible, but it was the weighted expectation of I wasn’t strong enough in my newfound persona, so I would have contact. My mum would come out once a year – which I loved – but would leave me with a relapse because I would remember who I was supposed to be.Dan: Yes.Beth: One of my sisters who I’m very close to, she missed me when I was away. I was gone for five years. I didn’t go back to England at all for five years. So, she missed me and she wrote me letters that would say, you know, “You’re actually leaving the family, and you can’t expect us to hold a place at the dinner table for you because we won’t know who you are.” It was such a heart-wrenching thing.I know it came from a good place, and we’re very close now. But, at that time where I wasn’t sure in myself, it would send me spiralling backwards, and the self-doubt would come back. It’s not what society typically calls self-doubt. It’s doubting your validity – doubting your validity as a health person, doubting your own body, doubting your path – your chosen path. So, that kind of doubt would send me spiralling backwards, and I would feel heavy and drained and my glands would come up.Luckily, I was in a place where I was grateful every day to wake up and be alive because it’s so beautiful where I was living. All I would have to do is go down and watch the dolphins play in the sea to want to be with them. And so, I would paddle out. By the time I got out in the water, I would feel better, if not 100 percent better. I would feel able to do it the next day – to go down and watch the dolphins and get in. And so, build “this is what I love, this is what I am now.”Dan: It’s a great way to interrupt those negative thought patterns, isn’t it?Beth: It is.Dan: I mean, they go very quickly when you take your way away from that setting. But, suddenly, that really engages you in your spirit and your mind and your emotions.Beth: Yes.Dan: It’s a powerful force to be passionate about something.Beth: Yes.Dan: Did you find there were any other specific techniques besides engaging in nature and swimming?Beth: For me, it was about being able to look in the mirror and know what made me happy and doing it. That was a hard thing to do for anybody. Well, some people are born to it. Some people know what they want to do, and some people have what people would call arrogance or conceit – just to go, “No, I’m not interested in that. This is who I am, and that’s what I want to be.” So, those of us who have that wavering personality who want to please other people, it’s a hard one to do – to look in the mirror and say, “No matter what other people say is right for me, that’s what I want to do.”So, I did a lot of yoga and the meditation grew. The time in the monastery grew out of meditative practice which I didn’t have a teacher for, but it was self-contemplation. Something that happened when I was in a teenage period, I was taught not to daydream – you know, “Get out of your head. Stop daydreaming.” But, actually, daydreaming is a powerful tool because it gives you something to live for. If you can’t get out of bed, you don’t want to be where you are, and you hurt everywhere, there’s not that much harm in imagining yourself somewhere else.It became something that can take over, and you do have to watch the daydreaming. You have to not wish your life away, but that was something that I used as a tool – visualization. You know, I learned visualization. Visualization is a strong powerful tool. I learned in the monastery to not visualize – to actually be where I was, but then I was in a much better place. So, when I had relapses, catching myself and remembering – it was in the remembering that there were good times behind and there are good times ahead.Dan: I think people who are a fair way down the journey of recovery will be able to relate very much to what you’re saying and benefit from the insights. You know, there is this transition – I don’t know if I want to use the word “personality” or “persona,” but it’s probably not a bad choice, but this transition in the self-identity that we may become a well person as we become anchored in a personality, in a structure that we feel good in.Beth: Yes.Dan: Obviously, if your triggers are things like – you know, many people have triggers like exercise or diet or things like this, but if your triggers are predominantly a social situation, a personal dynamic with another person, then your choices are not limit that exposure. But, ultimately, if you really want to be well, you have to be able to engage in your triggers and not have that reaction.Beth: Yes.Dan: Now, I know you’ve touched on it, but how did you do that? How did you become strong in your new identity and being able to say, “Yes, this is what my family thinks, this is what they expect, this is how they think I should be, but I feel okay with I’ve decided”? You know, we won’t obviously have to go into the specific details because they’d be private, but how were you able to gain that strength?Beth: Positive feedback. Again, at the age that I was, I didn’t have a job here, so I lived abroad for eight years, and it was positive feedback – time and again, positive feedback that the people around me, I was so lucky that I got adopted by families in every country I went to, and the bonds that I had, particularly with the family I had in Hawaii, the chats we gave me validity. We talked while I was in the field. He was a farmer and I worked for him. We’d talked out in the field about “why are you punishing yourself?”You know, I would be there basically running rings around any man on the farm, working harder and doing more. He just sort of sat me down and said, “Why are you beating yourself up?” He’d talk to me about, you know, “It’s great that you’ve got this body that can do it. Do you really want to end up aching at the end of the day? You know, you can take it easy. I don’t mind paying you more if you take longer,” and actually leaning that I had validity from other people. So, I learned the support network.You know, whilst I was in England, and my relationship with certain members of my family, some people would call it “strained.” I call it healthy that they have access to my life so long as it’s not in a limiting fashion, and it’s not that they can limit it. They can’t limit it now, but they would get hurt by seeing the fact that they can’t make me react how they think I should.You know, we have limited contact, but it’s a healthy contact, and that came from having such a strong support network built up around me that my friends are as important as my family in that I know who I am, I know who I can be, and my friends don’t expect me to be anything other than what I turn up with. Built up over time, that gave me the strength now to say, “You know, I’m really sorry this is going to hurt you, so don’t look.”Dan: You know, they are such wonderful points you make. Our mentors in life often come outside of our family – you know, the people who guide us and instil confidence in us. I still recognize, obviously, that you’d be talking, or you’d be having a visit, or you’d be making phone calls, and you’d be having relapses. And so, when the next visit or the next phone call comes, what are you doing different in your mind as you approach that moment?Beth: I suppose that only happened since I became a mother. I’d been living abroad. I felt completely secure. I came back to this country. I lived in this country for three or four years – fairly close to my family. I was in a relationship because I started to fall back into old habits. If I didn’t have a child, I don’t believe that I would be healthy right now. I ended up in a relationship because I was told that I should have a relationship – that that was the way to go – you know, you end up being married, you have a mortgage, you know. I sort of believed that again.All of the strength that I had while I was abroad, I wanted to test myself in the melting pot of England, and so I felt into what England told me I should do. It actually came from having a child, from going through that experience where the buck stops here that the relationship didn’t survive. We’re still good friends, but the relationship didn’t survive, so I’m a single mother. I had this baby that I am its go-to person. The buck stops here. I am its be all and end all. I can’t do something that’s not right for me. I have to do what’s right for me.And so, it was actually the mother confidence which is the most scary thing on the planet. You know, I fear what I am doing to my child on an almost daily basis because I choose to live differently. But, actually, his unconditional, unending devotion – because I am his mother – that is it. That is all. So, there is no stronger relationship than the one I’m developing with my son because I will not limit him. I want to learn who he is.From that, I’ve learnt the confidence to say, “You know what, there is a way of unconditionality. There is a way where I am right. So, to all of the other relationships that I have in my life, you know what, that’s fine. I’m going to do it my way. I’m being a mother my way. Therefore, I can be everything my way.” For me, that was the scariest thing on the planet, and the best thing that’s happened.Beth French discusses leverage and determination to overcome ME/CFSDan: So, I think what you’re sharing here is powerful, and I hope people are tuning in and hopefully getting what is really behind this message because, really, what we are talking about – it strikes me, Beth – is leverage. You know, at the end, when I see people recover, it’s always a point of leverage. That last little bit, it strikes me to give you that final determination that I must not fall into these patterns or these reactions, and I can accept my own views unconditionally and with strength. Was it the responsibility of looking after your son because you couldn’t afford to do it any other way.Beth: Absolutely. It’s more than determination. It’s determinism – you know, that there is no other way now. You know, I can’t not be a mother. And so, every day, I have to make decisions on how to bring my son up, and I know I’m not perfect, but I’m right for me, and I’m going to teach him to be right for him as much as I can. He’s going to have to learn it, but if I can show him, and so the word “leverage” is fascinating because you always think that’s going to be, you know, you’re holding something over somebody else, but actually it’s what’s more important.My belief in myself now is more important than other people’s belief in me, and that’s the truest. And so, when I swam the English Channel and I walked up to the beach in France, I became my own hero, and that was another defining moment. It was a combination of everything that I’d learnt, and it’s not a puff-chested peacock moment. It was actually “I’m responsible for my happiness, I’m responsible for my reactions to people, I’m responsible for setting my own path and my own glory, and I can set that how it is.” I’m not after fame and I’m not after fortune. I’m after the truth of me, and I’m after being the best me that I can be, and I’m after being every bit of me that I can be – to explore it, and to develop it, and it to enjoy it.Dan: Beth, you know, the amazing physical achievements and recovering that you have done are very inspirational. You know, in some ways, what’s inspirational is your claiming of it – claiming your success and finding your self-acceptance and your happiness. You know, I think these are things that so many of us strive for in life in general. It’s funny how I speak to people who’ve had this dreadful illness who come out the other end and they seem to be some of the happiest people I’ve ever met.Beth: Yes! I’m so glad I’ve had ME. You know, it sounds horrific to hear when you’re suffering – and I apologize! But I’m so glad I’ve had it because I cannot now be normal.Dan: There it is again. I keep hearing that.Look, I must kind of mention that you have actually gone on to do many amazing things – not just the channel, but I believe you did a possibly even crazier swim in Africa. Can you tell us a bit more about that?Beth: Oh. When I was in Hawaii, I swam for 24 hours between two Hawaiian islands.Dan: Ah, was it in Hawaii?Beth: Yes, it was a 24-hour swim, and I ended up with only one arm at that stage because my left arm froze.Dan: Oh, my goodness.Beth: And then, two weeks ago, I swam a swim that was believed impossible. I swam from Cornwall – the tip of southwest England – across to some island 26 miles straight out into the Atlantic that nobody has managed to do before. So, I managed to do that. That was fantastic – to know that, you know, it’s not just that I can swim a long way. Actually, I can pioneer things. I have the confidence now to try – and knowing that I could fail because nobody’s managed it before – I can still have a go, and that was my new learning. It doesn’t matter if I don’t make it all the way across. The fact that I’m trying is enough.Dan: Absolutely. It’s funny, I gave an interview about two years ago, and both the people interviewing me ended up in tears.Beth: Oh, really?Dan: It’s funny. I’m now on the other side of that after the last two years of giving interviews and doing interviews, I’m suddenly finding myself all choked up.Look, I’ve got to say you are an amazing inspiration. Thank you for sharing your insights. Is there anything in particular you’d like to say to people – people either who have lost hope and are in a very dark place as well as people who have made recoveries and living an okay life? It’s what I often call a very sanitized life where they eat all the right things, they do all the right things, then they are “recovered.”Beth: Yes, very safe, very careful.Dan: It’s a very safe recovery, you know. I’ve been talking to people about it, sometimes talking to people I interview. You are I guess one of the people I don’t make the point to because you’ve made it very poignantly yourself.Is there any sort of final message you’d like to give to our listeners?Beth: Yes.When I’ve been swimming the channels – it’s the only thing that I can sort of describe it as – I go through the night. I swim through the night, so it’s pitch-black. You could be with a bag over your head in a cupboard under the stairs with the lights off, it’s that dark. And your arms are swinging around, tick over and all you’re doing is this relentless motion and you’ve got to ask yourself why you’re doing it.The answer is so rarely “just because.” There is always a reason to swing your arms just one more time, and to get to the other side is never enough. And so, to get to recovery is not going to be enough because you have life beyond recovery, and there is always hope. There is always an emotion that’s going to just tickle you just that little bit to go, “I wonder if…” I think the people who have recovered who life a safe life don’t forget the “what if…” What if I tried that? What would I like to do? What would happen if…?To build the confidence, you have to stretch your comfort zone. I’m learning that our human existence is bounded by our mental comfort zone – that, if you push your mind to try, your body will probably follow.To people who are still suffering and are still in pain, you can swing your arm one more time. You can take one more breath. It is a perseverance. It is a looking inside yourself to go, “You know what, I can keep breathing. I can keep swinging my arms one more time. I can just keep going, and it will change.”Life will change. Your mind will change. There will come a reason. There will come a time when you want to go beyond, when you can go beyond, and when you dare to look beyond. I would always say, “Dare to look beyond.”Dan: Beth, thank you so much for this interview. You’re speaking of change, and I think we all have made that extra step just by listening to you today. You are a fantastic inspiration.Beth: Thank you.Dan: You know, you’re redefining the boundaries of what’s possible, and that’s fantastic! You know, at the end of the day, we need examples like yourself to really help people make higher goals. You know, it’s so important – not just to not accept our illness but not to accept a weak recovery and to strive for more.Beth: Absolutely, there is always more. You never know where it’s going to come from, but there is always more. So, yes, I hope that, even if I inspire people by them, you know, flaming against it and rebelling and hating what I’ve said because they can’t feel it yet, I hope that that generates energy that they can then find their own path because it will be their own path to recovery.Whatever happens, if people hear this, I hope people do get inspired in one way or another – whether it’s love or hate. I hope that that gives them energy to try something new.Dan: Fantastic. Thank you very much for your time this morning, Beth!Beth: Thank you ever so much, Daniel!Beth French Shares Her Thoughts About Overcoming Myalgic EncephalomyelitisMost people nowadays know someone who has been touched by ME, chronic fatigue or post viral syndromes; even though it is still largely misunderstood and incredibly difficult to get a formal diagnosis. When I began to suffer, in 1988, it was a suspected bout of mononucleosis or glandular fever that triggered a 9year struggle with nonspecific pain, exhaustion and immune impairment. I was only 10 years old. The inability to stay healthy, for a child raised on a farm being active and captain of every sports team at school, was as debilitating as the fatigue itself. Physical and psychological battling to just make it through each day meant great swathes of time in utter collapse. There was no diagnosis, just test after test that came back negative. At 17, approaching mock A levels and driving test, I awoke one morning unable to get out of bed. I was in a wheel chair for the better part of a year- with episodes of being totally bedridden. Changes of GP, trying to make sense of my condition, led to finding a GP who had a niece with similar complaints and a tenuous diagnosis of ME- myalgic encephalomyelitis and told the only thing to do was rest, total rest. Give up education, sport, everything. This is not an uncommon tale, even today. But at least it had a name. I made it a mission to find alternate view points to this and other nebulous conditions. Studying in Hawaii, having read everything I could get my hands on about the immune system and the mind-body connection in the western traditions, I found Lomi Lomi. It was not just the physical approach to the body, but the whole culture of anatomy that made sense. Looking at the body as part and parcel of the person, emotions and life events rather than a separate notion made total sense. The way of listening to the clients body- the strains and unique cellular reaction, as well as the words they use to describe their experience allows you to help settle broader systems and release tension throughout. Through releasing physiological reactions to stress, I learned the importance of the mind in this and all dis-ease.I went on to study Vipasanna meditation in Thailand, ordained in a monastery. Vipasanna is often called acknowledgement or mindfulness meditation and is the training of the brain to be able to prioritise and focus. The simple act of acknowledging experience as it is, separate to our emotional reaction to that experience allows you to not burden yourself with the stress that daily life can stack up on you. It is a living practice- one that you can practice all day long going about your daily life, not just sitting in a quiet room. The strength of the mind is phenomenal and having coping mechanisms for dealing with life is a vital part of anyone’s well being, ME or not.For many, life touched by ME is forever. I am fortunate enough to say I live completely without symptoms although I have changed my life to stay that way. As a self employed single mother with a mortgage, you would think there were enough causes to send me into relapse, but knowing the path to health and the signposts along the way to illness mean I can stretch what people think is possible. In 2012 I swam the English Channel and 4 months later I became the first British woman to swim the Molokai channel in Hawaii. In 2014 I achieved a world first- to swim from Cornwall to the Isles of Scilly. The relentless nature of ME created the drive I am imbued with that I can survive, the cold water is not as uncomfortable as the ache of fatigue and the dogged nature of recovery allows me to keep going long after good sense and reason dictate I should get out!The journey to health is not a straight line and takes into account nutrition specific to you, your personal reaction to the stresses in your life both positive and negative, your approach to life and where you are trying to get to. Unpicking long standing habits is challenging and sometimes scary, but can give you the freedom to move forward and achieve your potential, far beyond your accepted limitations.Here are some social media images for sharing:

Beth French’s Journey from ME-CFS to Ultra Marathon Swimmer