Watch the Transformation Before Your Eyes :
A Recovery from Long-Term ME/CFS
For Recovery Story Disclaimer, please see the main page here!
Many people wonder if recovery is possible for people that are sick long-term with ME/CFS. Brenten’s story is a wonderful example of what’s possible and we were lucky enough to capture parts of his journey on film.
When Brenten watches the footage from a few years earlier when he experienced the powerful shift transforming his recovery efforts after reading CFS Unravelled, he gets quite emotional, and frankly so do I.
Having coached Brenten during his recovery and walked side by side with him, through what was probably one of the roughest recovery journeys for someone recovering from long-term Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) I’ve seen, makes this story especially close to my heart.
When Brenten goes to watch the old footage of himself, feel free to pause and watch the video below sharing his experience of reading the book.
Watch this video when Brenten and I pause our recording in the above video!
Dan Neuffer: Well, every story of recovery is special, but this story today is particularly close to my heart. I’m speaking with Brenten today from Australia. I met Brenten some time ago and, in a little while, I’ll share a little bit of footage with you of what Brenten’s life and outlook was like back then.
Brenten’s experience with ME/CFS was very extreme. He was ill for well over a decade. Today, he shares his remarkable journey.
Hi Brenten. Thanks for sharing your story today! Welcome to the interview!
How’s it going?
Brenten: Hi Daniel!
Yeah, I’m good. Thanks.
Dan: Look, Brenten, your journey – like most of ours – wasn’t an easy path. But, before we get to your amazing turnaround after being ill for so many years, I just want to take it back to the beginning and when it first started – your illness. Can you tell us a little bit more about that?
Brenten: I can’t really pinpoint an exact time, but I started to become aware of it when it made really big impacts upon my life. I remember going up a set of stairs one day, and I just wasn’t able to walk upstairs. I just remember thinking, “I’m not just tired. I’m giving everything I’ve got. I’m giving 100 percent – everything I’ve got inside – and I’m barely getting up the stairs.”
That was probably the first time when I realized that something was wrong. I’d been getting tired progressively, but I just thought it was from maybe my lifestyle or some things I was doing because I had a fairly extreme lifestyle. But, on this day, going up the stairs, you know, I remember thinking it was something much more different than just normal tiredness, and that was probably the first real thought I thought that there was something wrong with me there.
And so, this was how long ago? Roughly, was it about 15 years ago, was it?
Brenten: That would be maybe about 13 years ago, maybe 14 years ago.
Dan: And what happened next? Did you then get other symptoms as well?
Brenten: The tiredness on its own was there for a little while. And then, once it had sort of set in to be a daily thing with no real change despite me making some changes to my life, then other symptoms started to come into my life in terms of the anxieties, the head problems, the fogginess, the inability to speak properly, and just generally not able to eat any food, and just generally the feeling that my entire body – from top to bottom – was essentially just falling apart. It just accelerated and took more and more a hold of me no matter what I did.
Dan: Yeah. Look, I think most people who have ME/CFS or fibromyalgia syndrome know that malaise that you’re talking about there where you just don’t feel right all throughout your body, but you mentioned not being able to eat, right? Did it affect your gut health?
Brenten: Well, you know, I remember at the time where I used to make a joke that I couldn’t even eat air. I mean, I just dreaded eating because I knew that whatever I ate, I was going to feel terrible. You know, I was going to have maybe vomiting within a few minutes, extreme crushing tiredness – more than the level I had all the time. I was going to need to be there within a few hours.
I mean, I just got down to eating the barest minimum of food. I went through a stage where maybe I could find something to eat and then I’d eat it for five or six weeks until I couldn’t eat it, and then I’d be back to, “Well, what can I eat now?” Then maybe I could have something else and then I’d just eat it for five or six weeks until my body just wouldn’t tolerate it.
I couldn’t have a meal that consisted of this and that and this and that. It was just a matter of just hoping for the best and maybe today I could eat some chicken – maybe.
Dan: What about the other symptoms? Because people often have this where they feel almost a little bit silly going to the doctor because they have so many different symptoms. I’m just wondering if you can remember any other symptoms that you experienced during your years of the illness. Besides the mental and the cognitive symptoms, and the malaise and the exhaustion, did you have any other sort of specific weird symptoms that would come up over time? Or was that basically the vast majority of it?
Brenten: Look, I had some weird symptoms. You know, in the end, it wasn’t unusual for me to think, “Well, what’s next?” You know, you would get to a level where perhaps you thought you could live with it and that was just the basics of this constant tiredness, the constant head fog, but I had a set of things that used to pop up every now and then. it was like this crushing, you know, these eyes would just be crushing and aching inside.
Another one was I would feel poisoned – like, you would literally feel poisoned throughout the whole body. In other times, I would have all my joints would ache. Other times, it would be not just normal anxiety or depression, but symptoms approaching schizophrenia or bipolar. I had lots of problems. They would come up and would just paralyse me. I’d just go to bed because not only was my body distraught, but my mind now would take it on another level where you’re just going completely insane. I felt like I was just sometimes just battling what an insanity was.
Dan: Well, you know, people find it often hard to understand what it’s like to have the illness. If you think about some of the worst times in your life where you were at your worst, I mean, how would you explain that to someone who has never experienced anything like that? What might be a metaphor to describe what it was like for you to have the illness?
Brenten: Well, at those worst times, I mean, you know, I prayed to die. You know, I would go to bed (I was in bed all the time) you know, you would say to yourself, “Well, I would love that the morning would come around and I wouldn’t be alive.” Or I would get a feeling of panic that I simply could not get to the next moment. I could not take the next moment of suffering.
I remember speaking to a lady from the UK. Eleven years earlier, she had cancer and chemo, and she had recovered from it. I asked her – just as a point of interest for myself – I said, “You know, what are two illnesses” and, 11 years later, she had got CFS. I said to her, “Look, what are these two illnesses like? How do they compare?” She said, “Brenten, that cancer and that chemo, that was really bad.” She said, “It’s nothing compared to this.”
It sort of made me sort of a little bit dull days because I thought, you know, I sort of started feeling like a sook. You know, you kind of tell people. My vocabulary just wasn’t enough to really capture what it was about. Most people would say, “Oh, yes, I’ve been tired. Oh, yes, I’ve had this.” You know, the infinitely respond with something that they had had that they thought would be in rough alignment with what your experience was. And so, then I didn’t even bother telling anyone.
With what she said, it made me feel better because I thought, “Well, I’m not just complaining and not just being a sook.” I mean, this experience and the conditions that I was living under, they were that extreme. I mean, they were extreme!
Dan: Well, that’s the thing. I mean, someone said it’s very long a journey when no one seems to understand. I always say that, unless someone’s really experienced it, they struggle to really get the depth of the suffering of what it’s like.
Brenten, I guess you’ve come a long way. You are here now in the recovery interview. What’s life like for you now in contrast?
Brenten: Well, I can remember when I first started to get this, I was driving. At the time, I was delivering carts – golf carts – over Queensland. I came back in the yard one day. I remember I wasn’t able to get out of the car – virtually. You know, I had to sit in the car and gather everything up to open the door. I remember looking at my hand, thinking, “I can’t get it to that door to open the door.”
I remember thinking at that time, I’d been a few months or maybe I had it perhaps maybe a year even. I had spent quite a lot of money on doctors. Even at that stage, I remember thinking to myself, “Brenten, if you can recover from this, you can do anything.”
Dan: Yes, it is quite an emotional journey, and I think many of us who are sick, especially when we’re sick that long, Brenten, I think many of us kind of feel, “Wow!” You know, we can’t really envisage that we can recover. We close ourselves off because we try everything, don’t we? When it finally happens, it can be quite a surreal experience.
Brenten: You know, I always had an element of hope. I think you have to. Otherwise, you do die.
Dan: Yes, because it makes it hard to keep going, doesn’t it? If you have no hope, it just makes it crushing too.
Brenten: Well, that element of hope was always there. Otherwise, I mean, I know in ten years, I’ve spent $100,000 on trying to get better. Probably you can relate to it, and others can relate to it. I used to go through stages where, you know, you go through a push where you save some money and you save some mental collateral, I guess, or some mental capital. And then, you’d spend it – you know, on a six-week or four-week push – on trying the latest idea. You know, the latest whatever you read in the forums or someone had told you this latest idea. And then, you go down that path, and inevitably would end up at a dead end.
And so, then you’d be back in the hole – not just back in the hole – but then you had to face more disappointment that this was just confirmation that was no end to this. You know, I thought I was one of those people who, I didn’t even read recovery stories. I didn’t want to because I had to think, “Well, I’m one of these people who just aren’t going to get better.”
Dan: Yes, I know. Look, I certainly can relate to that myself. I think many people who have gone through the experience feel the same way. I always admire people who never lost hope. I certainly can’t describe myself as one of those, unfortunately, but I think it is great if you can always keep that hope. Obviously, that’s the whole point of sharing these stories – to give others hope.
You mentioned trying a lot of things. Had you tried a lot of different approaches in order to recover?
Brenten: Well, I didn’t just get anything. I mean, I tried – as far as I could see – anything and everything that came to me. I mean, I haven’t got the list in front of me now, but I’ve written the list down before, and it’s probably about 20 things long. It ranges from acupuncture to shamanism – spiritual healers; you know, all the diet changes in the world; nickel therapy; the reverse therapy; Gupta – you know, there was everything.
I tried everything. Nothing really made a difference. There was nothing except something that might momentarily offer a degree of management to my symptoms, but the inner core, what I felt like the inner core that that whole illness is built around, nothing changed that. For me, that inner core was a complete loss of my Self and where my Self had lived now was just a hole of infinite suffering and there was no limit to that suffering. Not only was that hole unlimited, but it had somehow the knowledge to counteract any move I made against the illness. It seemed to have an intelligence all of its own. Not only was it the illness of tiredness and the symptoms, but those illness, tiredness, and symptoms seemed to be alive in themselves. And so, every moment was unrelenting.
Say, when you’ve got the flu, you say to yourself, “Hey, I have the flu, but I’m still here.” “Hey, I have the flu, and I’m aware of time passing and getting better.” That didn’t happen to me. All I was aware of was inside that every moment seemed to be eternally agonizing. There was no improving. There was no sense of myself getting better. There was just this constant where I was gone – gone and just this most unimaginable corrosive misery had replaced it.
Dan: Yes. Well, I think many people feel that the illness almost takes on a life of its own and they try a lot of things. I mean, it was interesting that you did try. You know, you mentioned some mind-body approaches. From our past discussions, I know you have had varying success, but I know you also tried a lot of physical treatments, is that right?
Brenten: I tried a lot of physical treatments. It was my first point of call. Most people, you first go to the doctor. I mean, I really didn’t get anywhere there, and I was on anti-depressants. I tried a lot of naturopaths. I got really nowhere there. I tried a lot of supplements on my own. They were just a poor management tool – at best, some of them made things worse.
Dietary changes, of course – again, just a management tool, really. Various hormone replacement things like your DHEA, your testosterone – those types of things – again, nothing really ever made a difference to the point where I said, “Aha! This is actually what’s wrong with me. I have a lack of this – a lack of testosterone or a lack of DHEA or this organic thing in my body had gone awry and now, when I fix this, now I get better.” That never happened. That experience never even looked like I was going to show up on the horizon.
Dan: Brenten, you know, I’m going to take you back a little bit to when we actually first met. I’d like to just show a video. We’ll pause this interview for a moment. I’ll just let you have a look at that to see what you think.
Dan: Now, I stopped recording because I thought it was a private moment for you. I know that was quite an emotional moment for you, seeing what it was like back then for you. Tell me, how did it make you feel? What are your thoughts looking back at that – that old Brenten?
Brenten: It was really hard to watch, to be honest.
You know, when I see the first clip of me, I can see the suffering in me.
Brenten: I can see how desperate I was.
Brenten: I can see the suffering but, also, I can also see how normal people would have looked at me and I looked relatively normal. You know, I remember some days I would look in the mirror and I would feel horrendous to look in the mirror. I’d think, “You don’t look too bad, Brenten.” And so, only because I had the knowledge. People with CFS, you can see it, Daniel. I know that you would have seen it that day. But I look back now, I can see it, but if I was just a normal person, it’d be very difficult for me to see the level of suffering. I can see it in the eyes. That’s where I can see it. I can certainly remember when I met you that day.
Look, it is a thing that they call the “invisible illness” because we don’t necessarily look sick. I can certainly reflect back to my own journey – meeting people, and people saying to me, “Oh, you look well!” and I would just smile and go, “Yes!” thinking, “Oh, where do I lean against? How do I sit down, you know?”
Brenten: Definitely. You can’t say anything really, can you?
Dan: No, that is a frustrating time.
Tell me how things turned around for you after reading CFS Unravelled. Was that your main turning point? Or do you think maybe a turning point happened before that? Or did it happen after that?
Brenten: Well, there was a point earlier that happened that allowed that book – your book – to have the significance that it did. I mean, I think, probably maybe a year or so earlier than I had read your book, I had started with Gupta, and I’d read his hypothesis about the amygdala and the central nervous system becoming dysfunctional. Everything he said seemed to gel or seemed to have resonated with me. I started on some Gupta stuff and it made a difference. I knew there and then because this core inside had changed a little bit, but I couldn’t make the changes stick. I got to a dead end with Gupta. Whilst I inherently sort of still felt that his hypothesis was right, I didn’t know how to really get any further with it.
When I read your book, I had been introduced to that idea about the central nervous system, about the autonomic nervous system. Your book was different in terms of that it brought in some other things. I think, at the time I spoke to you about that lightbulb moment that pulling up all the anchors, and it was like you said.
You know, if you’ve got a ship and you wanted to go out of that harbour, you pull up an anchor and there’s another five there, it’s not going to go anywhere. Your analogy was, “Well, look, the autonomic nervous system, it might have four or five anchors holding it down or keeping it in this perpetual locked-in state, and you need to take care of those five anchors before that nervous system will now retrain or incline, in fact, to the direction that you want it to go.
For me, that was a big thing because I realized that I had got to the dead end with Gupta because I simply had another four anchors thrown in out there. That was a huge moment. I thought, “My goodness, when I take care of these anchors that are keeping in this state, well then I can actually start to make an improvement in the core of what I know had gone wrong in my body.”
Just for people listening who might not be familiar with some of these different programs out there, I guess the thing I’d like to say that, you know, many people have great success with different programs. It’s just that, most of the time, one thing won’t necessarily work for everyone. And so, I think people always seem to keep that front of mind that just because something hasn’t worked for one person doesn’t mean it’s no good, and just because something has worked for somebody doesn’t make it the magic solution.
You know, you read the book, and it gave you, I guess, a different sense of confidence now that you were on the right track. What else happened to really turn things around now?
Brenten: Well, if I look at the second interview there, I can see an increase in hope in me. I can also see maybe, you know, if I had known back then what I know now, maybe I was a little bit optimistic because my eventual recovery was longer than I thought it would be, but part of that journey of getting to that eventual recovery was a realization that it was okay and it was absolutely necessary and part of the process to go sometimes one step forward, two steps back.
Brenten: Sorry. I’ve just got to plug in my battery here.
Look, getting back to what I was saying, you know, I get to a moment of it was somewhat of a mistake in judgement in thinking that my recovery would be linear. I guess when we have, like, the flu, it’s a fairly linear recovery. You can sort of measure it and gauge it. You know, “Last week, I felt like this. This week, I feel better. Next week, I’m going to feel better again.” It just wasn’t like that with my recovery.
I mean, my recovery was sometimes one step forward and five steps back. You know, that took a toll on me mentally in many ways because, until I came to realize that that was actually part of the process and it had to be part of the process, I was creating my own problems by trying to force along the recovery and creating my own set of worries from that.
That was a big turning point in my journey of recovery. It was realizing that I have to be patient in realizing that I couldn’t force my body. I guess, if I look at it in terms of years – this being now 2016 – I think, really, last year, I made more in the last six months – the last six months of the last year. I probably made more recovery more than in all the other years combined.
One of the reasons why that was is because I started to fundamentally change some of the ways I felt about myself. I knew part of the key to recovery was to change my thinking. I had done that in many areas, but I hadn’t actually done something which you had recommended to me in one of the very first times I had met you. You said to me something to the effect of “Brenten, I want you to go home and, when you rest, when you lie down and rest, I want you to actually really rest.”
You’ve got to remember lying in bed resting and just itching or just being compelled to go and do something. I couldn’t even rest. Even though I was so dead dog tired, I couldn’t actually be in that bed and rest. In the last year, I’d actually started to realize the benefit of giving myself permission that I didn’t have to be compelled to do all these things in order to be valid. I didn’t have to feel like I had to work or do this or achieve that in order to feel that I was a success.
And so, I started to give myself permission that, “Hey, it was okay if I wanted to go and have a rest, if I wanted to go to lie down, if I wanted to take it easy.” That was okay whereas before I might have been taking it easy, resting, or having a lie down or whatever, but I would never say I was okay with it. I always felt “less than” by doing it.
Brenten: And so, that was a big thing for me to start to come to terms with me just being enough as me whereas before there were all these endless “not good enough.” And so, for me, that was really the thing that started to change, that met the last component of my recovery coming into place because I had made so many advances physically. I got to a point where physically I was able to do so much more with life.
At that point, I remember thinking, “Is this what recovery is? This must be what recovery is.” But there was still something in me that wasn’t right. I remember you saying to me – and, I think, inadvertently answering my question or answering my doubts – you said to me, “Now, there are many people, Brenten, who think they’ve recovered, and then they spend all their time holed up in their house,” and that’s what I was doing.
I was still managing my life according to, “Well, I know if I go and do this, I know if I go and do that, I’ll still be physically okay, but I need to sort of still be withdrawn from life,” and I hadn’t been able to make that step. That was really the key for me that really meant recovery.
Recovery didn’t just mean “now I don’t have to go to bed all the time, now my body isn’t aching all the time, now I can get out of bed when I want to, or whatever.” It meant that I was actively able to participate in life without the feeling inside that everything could fall apart.
Dan: I think we have to realize the toll it takes on our whole outlook on life after a decade of illness. You almost need some mental rehabilitation.
Brenten: I only realized that probably in the last 12 months because, I mean, when I first got this illness, whilst my symptoms were more acute, I actually had more capacity in terms of willingness to do life. You know, if you said to me, “You’ve got to go do this, Brenten,” well, that wasn’t a problem. But, in the end, I wasn’t able to do anything because I’d become, as you said, so conditioned. I had built so much fear.
That illness had built so much fear in me. I really only saw it in clarity in the end when I thought, “Okay, my body is physically better and I’m feeling better, but why can’t I actually go and insert myself back into life?” That’s when I saw what that illness had done to me psychologically for all those years.
Dan: Yes, and I guess that’s probably part of the reason why you felt so emotional seeing that first video – taking you back to seeing what it was like – because we don’t really get a proper perspective on that, I think, until after we recover because, when we’re in it, often we’re just trying to hold everything together, aren’t we?
Brenten: Oh, that’s what you do. You’re just trying to hold it all together.
Brenten: That’s the thing.
I remember when I first met you, you know, you said one of the problems that people with CFS have is that they’re too strong for their own good. I didn’t really understand that at the time because that’s what we do. We do hold it together so incredibly well. In many ways, it seals off potentials or opportunities to truly recover. Your true recovery really is a feeling inside that “Hey, I’m safe, and it’s safe to be me, and that I’m okay with doing life,” because, until you can feel that feeling that I can let go of hanging on, you haven’t really recovered.
Dan: Obviously, we’re talking about a lot of the psychological aspects in the approach to recovery, but people might be wondering, “Well, you know, Brenten, you’re so physically sick,” and everything that was going on, they’re saying, “Well, what did you actually do to get better here?” I mean, because people want to take these things with them. You know, they want to try and do something themselves.
Can you sort of describe a little bit what was part of your journey here and your experience and some of the changes that you made?
Brenten: Well, I know some people have recovered from CFS. They simply say, “I did this, I did this, I did this.” My journey wasn’t like that. My journey was quite long and arduous. It was arduous. To be honest, you know, in many ways, the recovery was just as hard – if not harder – than the illness.
What really kept me going – or the mainstay I think of it – was coming back to the realization or coming back to the knowledge that really the only thing that had gone wrong in me was that the autonomic nervous system had become dysfunctional because sometimes throughout that journey, when you make some backward steps and you get symptoms back, you know, you say to yourself, ‘This has to be more than just this. This has got to be something organically wrong with me.”
Once you get back on that treadmill, you’re walking away from your own recovery. And so, it was important to have you as someone there to keep reminding me of that, to keep reminding me of myself of that, and to keep realizing that it was okay to dips. It was okay to go backwards for a little bit.
Sometimes, I didn’t have the answer. Sometimes, I thought, “I don’t know where the next answer is.” In those times, it’s got to be tough. Sometimes, it gets very tough, but inevitably what happened, if I just remained open to myself, the answer would come in myself. Sometimes, I would search out there, and something would come. It would be a piece in the puzzle that would unlock a piece in me that was just a block – it was just a block, it was just a level, it was a peeling off almost of and then allowing me to go into the next level, allowing me to take more space in myself, and really that’s what the recovery was. It was a reclamation or reclaiming me.
Brenten: Many times, I didn’t know where I was. Where was I? I had gone, you know. Maybe I’ve got a little bit more of me, but then I would disappear again. So, it was a process of trust that the road was there as long as I kept it in perspective of “Hey, this is your autonomic nervous system – and whether you think the amygdala is tied into that or not, it doesn’t greatly matter.” The fact of the matter is that the symptoms and everything that follows are a result. If I tackle them on their own, I was never going to really fix that thing. I had to tackle it back here. That was the main thing.
Just keep the faith and just be patient and just trust that the next step, the next phase, the next level was coming to me, and it came to me in some really strange ways sometimes. You know, just when I least expected things to change, they did change. Just when I thought I couldn’t get the next piece of the puzzle, it did come.
Dan: Look, you showed a great deal of persistence. It’s always difficult when we have a multitude of problems that come with CFS and sometimes that are adjacent to CFS, and that can complicate our recovery, but I think one of the key qualities you really demonstrated was this persistence.
For people listening, it is worthwhile for them to know that you did, I think, engage in many of the usual physical strategies by clearly the psychological side and the understanding is what put those strategies into context because I know you supported your body with supplements and you watched what you ate and you also used physical exercise and movement, but it seemed like it was suddenly all gelling for you, especially in that last year.
Brenten: Well, that’s when it really came together, Dan. I think I had to make certain improvements in the body for those psychological things to come off because whilst the body was locked perhaps in those heavy symptoms, I mean, I just wasn’t able to access those things in me. I mean, you pour out sometimes so much in the suffering, you’re just in a tangle, so I wanted to be able to access those things.
As the body improved, those things just became self-evident. I didn’t really need to try and unlock the mystery whereas, before, they were a mystery. But, as the body improved, they just became a self-evident thing of what I needed to do, and some of those things, they weren’t easy. I mean, you just said, “You were very persistent,” but – thanks for the compliment – to be honest, what choice did I have? There was no choice. It was either get better or die. That’s what I felt it was.
People say, “Oh, you’re incredibly strong to have recovered,” but, you know, when you have no choice, you just have to do it. There were many times when I lay in bed and I thought, “I cannot do this recovery. I cannot. I am not strong enough to do this,” but the next day came or the next day after came, and a little bit more – a little bit more life, a little bit more whatever – just to keep going that little bit further. That was the key because, at any stage through that recovery, to give up, what’s the point? You’ve given up then, haven’t you?
Dan: Tell me, what’s life like now that you have recovered? Is it what you expected? Can you describe some of the physical differences of things you can do now that you couldn’t do whilst you were sick?
Brenten: Well, physically, there’s practically nothing I can’t do. I mean, the only thing I really can’t do now is really run, but that’s not from CFS. That’s because of my age now and my calf muscles. If I go for a run now, my calf muscles just don’t deal with the loads, but that’s nothing to do with CFS anymore.
You know, there’s nothing physically I can’t do. I can exert myself as much as I like to exert, and that was a big thing. You know, I can remember throughout the journey of recovering at various times thinking, “Okay. Now, I’ve got my physical condition back,” but I didn’t because I couldn’t exert myself from deep in my core. Now, I can – that’s the main thing.
I remember when I first met you, Dan. You said to me something like, “You’re the fittest-looking bloke with CFS I’ve ever seen,” right? Because I was doing a little bit of exercise. I was able to go to the gym and lift some very light weights, but never really applied or exerted myself from within. Now, I can apply and exert myself from in here because this here is back, and that’s the difference!
Before this here came back in terms of that “oomph!” life wasn’t available to me. Now, life’s available to me.
Dan: Because there was always a consequence for your effort, wasn’t it?
Brenten: What’s that?
Dan: Because there was always a consequence for your effort – as in with the relapsing and the symptoms getting worse after you work out too hard.
Brenten: If it that didn’t happen, it was always the possibility. You see, just the possibility stops it.
Brenten: I mean, there were so many things that I wouldn’t do because possibly that may happen. And so, I wouldn’t go there.
Dan: Yeah, I know, absolutely. We don’t want to take the risks. When we have been so sick so often, we get to a point where we just don’t want to take the risk. I know what you mean.
Brenten: Probably the main differences that I’m noticing now – more and more on a day-to-day basis.
Dan: Can you just move the camera a little bit?
Brenten: Which way, Dan? That way?
Brenten: How’s that?
Dan: Yeah, just slightly up. Okay. That’s good.
Brenten: Probably one of the main differences that I’m noticing now – virtually day by day – is that a third component to my recovery. The first component was obviously physically getting better in the body. The second component was psychologically becoming more available in myself and more able to apply myself to life.
The third component now that I’m noticing is that the person who existed before CFS, they don’t exist because that person actually had a mindset and a way of looking at life and a way of approaching life that actually built that illness, that actually created that illness, and that is more and more disappearing so that I am now a vastly different person. In many ways, that was forced upon me by the illness. In many ways, that was one of the hardest things because I didn’t want to change certain attitudes or didn’t want to change certain outlooks. I wanted to keep certain viewpoints and I realize that, if I did, I wasn’t going to get fully better.
As good as I feel now, I know that there’s still much more improvement. I know that I’m going to become more a person – not in terms of constructing that person, but in terms of allowing that real person to come out by taking away those old constructions more and more.
Dan: Well, there’s such a contraction when we experience ME/CFS because it’s a shock to the whole system, and the suffering, and we withdraw from life in effort to cope. I think, when we sort of come out of that fog, that awful experience, especially when it’s longer term. You know, when we’re talking about years and even decades, I think it’s quite a shock how much we have to assimilate back into life.
Brenten: Well, you’ve explained it’s like a man that’s coming out of jail.
Brenten: You’ve been institutionalized by that illness.
Brenten: You literally realize that you have to reequip yourself.
Dan: Tell me, Brenten, as we’ve sort of come towards the end of our interview, you know, you obviously had lots of setbacks. You had a lot of frustrations. I’m wondering, in light of your whole experience and how things turned around for you, is there anything else that you’d like to share with people listening? Any other messages you want to give them?
Brenten: Look, the only thing I would say would be this – you know, as I can remember when I was ill, thinking that, you know, I knew there were other people with CFS, but I still thought that I’m unique. I still thought that I’m one of these people who just aren’t going to get better. You know, it wasn’t going to be possible for me. You know, I had that little glimmer of hope always there. I just thought that, you know, my level of suffering is so enormous that nobody…
I remember even speaking to you, Daniel, and questioning whether you had really had this illness, and then you said some key critical things that only someone with CFS could actually understand – that only they could get it, you know – and then I had a lot more trust in you.
I had a lot more faith in you because I thought, “This bloke has had it.” You know, there are a lot of people out there who are chronically fatigued because they’ve got something organically wrong with them, but this CFS thing is something completely different.
I want to say to those people who do have full-on real CFS where they totally feel completely marginalized, where they totally feel completely so far out of the loop that it is possible. It is possible to get better, and it absolutely starts with even the tiny – and even if it feels completely fake – it starts with the belief and the hope and the willingness to say, “I can get better!” and “It’s possible!” because until you embrace that possibility, you probably won’t get better.
Dan: Yes. Well, Brenten, look, I thank you for sharing that message. I hope that there’s many people that you’ve helped getting that possibility and helped gain that hope today by sharing your story. I want to say thank you very much for sharing what I know is a very emotional journey and a tough journey, but it’s personally great for me to see as well that you’ve arrived, so well done!
Brenten: Thank you, Dan. It was quite emotional for me. It was more emotional than I thought it was going to be watching that little bit of history there and talking about some of these things today, but it’s been a journey. Quite remarkable.
Dan: Yes, absolutely. Okay. Well, thank you very much for sharing today.
Brenten: Thank you, Dan.
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Thanks for sharing, Dan. It’s nice to have some validation now and then while on this journey. And it helps to know that this back and forth is part of the process.
Thanks Dan and Brenten.
You’re welcome – yes it’s comforting to know – glad you liked it.
Oh, one other thing, Dan. The before and after video is unavailable.
We don’t see any difficulties – can you explain what happens when you try to view it? Same on other devices/browsers?
Excellent interview. Perhaps the most insightful interview from a recoveree that I’ve ever seen.
The before and after video just comes up with a blank screen (like a detuned TV) and says “This video is unavailable”. Could it be a geographical issue?
Thanks for the feedback Stuart – high praise indeed!
Hope it’s fixed – I have re-embedded the video. Looked fine at my end – frustrating.
Yep – works now.
What a moving story- I wanted to reach out and hold him in the before video! The utter despair,fatigue and exhaustion was there in his eyes- a look I recognise! I’ve seen a few recovery stories where the sufferer is bouncing around at end talking about the latest marathon they have done or whatever and somehow it’s hard to relate to as you think ‘that will never be me’ however there was something real and raw about Brenton and his eloquence that was sooo relateable – even the bit where he talks about thinking he was unique in his story… Read more »
Thank you Jmozz
It’s wonderful to hear how you related to Brenten’s experience – I too wanted to hug him and related to his feelings about it which is why I actually stopped recording to respect his privacy. I had many moments like Brenten after I recovered, but I never saw video footage of myself in those moments. I wrote about this kind of experience in a different blog on Health Rising – where I explain how I felt sorry for that former self.
I have found this interview so inspirational and emotional . I have been suffering for 10 years , so many ongoing symptoms… i have ordered your book and feel I am completely ready to open myself up for recovery. Thank you for your guidance, you have been the only person out there who has given me answers and hope.
Thanks for your comment Julie – I am glad you are uplifted and inspired.
It’s interesting how some people really love the interview and others feel it is too non-specific – it also shows on the comments on youtube here: https://youtu.be/_tFNUa6J_JY
Love the interview. Especially knowing that everyone feels like they are the only one who will not get better. Understand the turning point is taking responsibility for your own health and having hope, but what would be really helpful to me is knowing what the first signs of recovery were for others. The first physical proof that they were starting to get better.
Hi Sue – thanks for the comment!
Look, symptom treatment can certainly make us feel like we are making progress.
But I would say that the first signs of recovery are when we start to bounce back more quickly from flare ups – that’s been my experience.
Dan wat about wen ur bedridden and it’s really one constant flare. I ask cuz some things like internal vibration which were shocking 10 months ago have all but disappeared so I think I’m Getting better but then the night sweats come back. So better or just cyclical? I don’t think it’s obvious unless looking in the rear view mirror when recovered. That’s why I asked and wd love to hear included in stories cuz this for me wd build on the hope. Love CFS unravelled. Am using it for my recovery but at this stage don’t know if I’m… Read more »
Yes, that’s not an easy time – I know having been there myself.
Indeed it gets confusing to really track progress because of the cyclical nature of flare-ups.
I usually tell people to assess monthly and do the assessment based on the whole month, not just on how they feel at the moment.
Thank you Dan. When the fear gets too much I listen to your recovery stories. I live alone with minimal support and often they are the only thing I have to keep afloat. Keep ’em coming.
I have lots of recovery interviews in stock for publishing – will work hard to get them out to you all in the coming year. 🙂
Thank you Brenten and Dan for sharing this interview. I’ve been sick for about 7 years now, believing that its only time, rest and avoiding stress that will allow my body to recover. But its taking so long and the setbacks are brutal. Listening to your experience has given me hope. I’ve always believed that this illness and recovery is a complete mind, body and spiritual transformation journey and what you say confirms this.
It is a trying journey at times – but important to keep your eyes on the goal.
Indeed these are key aspects of recovery, but be mindful to expand your approach to RETRAIN your ANS also on top of the resting.
The last few remarks that Brenten made in that video hit home for me: that it is vital to believe in the possibility of getting better. Over the years the wisdom that I have received, through the literature I have been exposed to, preaches that M.E. follows a path of each time one has a set-back one recovers, but never to quite the same level as one was at before the set-back, so that there is a slow but gradual deterioration over time. I think, for me, that has become a self-fulfilling prophecy. I have never suffered to anything like… Read more »
Thanks for your comment Mary – and a Happy New Year to you! 🙂
Thank you, Dan and Brenten for this insightful and inspiring video! The thing that most struck me was Brenten’s comment about how he had to “make space” for getting well, i.e. he had to be able to imagine what it would feel like to be well, and be able to see that future. That was a huge “aha!” for me, because I don’t have a “before” to compare to. My therapist believes I’ve had ANS Dysfunction since early childhood trauma began at the age of two. I don’t remember a time in my life, even throughout my childhood, when I… Read more »
I am glad you were supported by this wonderful interview.
Only someone that has gone through that struggle of lost and found hope really gets it – I have seen that Brenten’s CFS recovery interview has particularly resonated with many people.
Great to hear you making progress with the ANS REWIRE program – hope to share your story here one day soon. 🙂
Dan,I’m confused by your decision to layer music over this film. I found it impossible to watch as I think would the majority of people with our experiences.I could see from muting the film the awful suffering of this man and it was upsetting not to be able to listen to his story. I’ve had to more or less stop watching t.v. because of the way emotive music is layered over dialogue these days and have had to resort to older shows and films from before this format became the norm. Please, please on a website for people who I’m… Read more »
There is no music layered over the interview – it only plays during the intro which is common practice for podcasts and interviews.
Just skip the music part!
Thank you so much Brenten and Dan for sharing this. I can see you had the same fears as me: that recovery might be something that happens for other people but not for me, and it’s truly wonderful to see how you were still able to recover.