picture of Mollie with ME/CFS/POTS recovery details

Oda had been ill for most of her teenage years and at the age of 18 her symptoms drastically worsened.  With the onset of Postural Orthostatic Tachycardia Syndrome (POTS), her ‘normal’ was suddenly no longer tolerable and soon after her ME/CFS symptoms worsened significantly. 

Having also been diagnosed with Hashimoto’s, she thought that was the root cause of her illness but when treatments didn’t help, she looked for other answers.

Then Oda came across the ANS REWIRE recovery program and started her recovery journey.

She talks about her confidence in the underlying explanation of the program, and how she took the lessons about a multi-lateral approach to heart and engaged in other treatments like somatic experiencing and cold water therapy.

The interview took place about 1½ years after commencing the program, and she describes her health as being better than ever.   Listen to her recovery insights in this wonderful interview. 

IMPORTANT:
Never practice cold-water immersion alone.  Always check with your doctor before trying any new strategy or treatment
to ensure it is safe for you!

Transcript

Dan Neuffer: Hi. My name is Dan Neuffer.

I’m the author of CFS Unravelled and the creator of the ANS Rewire Recovery Program.

The most damaging myth about fibromyalgia, ME/CFS, POTS, multiple chemical sensitivities, and related syndromes is that, just because there’s no one-fit-all cure, that people can’t recover their health and get their lives back.

Since 2014, I have been doing interviews with people who have done just that, who have fully recovered and gotten their lives back. I’ve been sharing them on this very desk that I’m sitting at right now.

If you want to learn more about recovering your health from these syndromes, click the subscribe button, and make sure you click the notification icon, so you get notified when I upload a new video.

This interview is with Oda who recovered from ME/CFS and POTS after ten years of chronic illness. Oda recovered using the ANS Rewire Recovery Program. Like the program encourages, she engaged in multiple strategies.

I was particularly fascinated at how she was drawn into the icy cold waters of Norway and the parallels between how she did this and some of the desensitization strategies within the program. Within three months, she was 50 percent recovered and no longer qualified for diagnosis. After 12 months, she described herself as being fully recovered. One and a half years after starting her recovery journey, Oda says she has never felt better in her life.

Let’s get straight into it. Here’s her story.

Well, it’s my special privilege to do another recovery interview. This is with a person who recovered using the ANS Rewire program. These interviews are especially dear to my heart. Today, I’m speaking with Oda from Norway.

How are you doing, Oda?

Oda: Great. I’m doing great, Dan.

Dan: It’s nice to be able to ask that without it being a loaded question.

Oda: It’s just easy to answer.

How Oda first became ill with ME/CFS

Dan: I think your smile says it all.

What I like to often do is I like to tell a little bit about people about what happened and how they first got ill. Was it a long time ago that you first started to get symptoms? How long ago was it?

Oda: I’d say so, yes. I’m 26 now. I’d say my very beginning of my downward spiral was when I was 14 or 15 years old.

Dan: What happened?

Oda: In the beginning, it was just the regular teenager not taking care of her health. I was in high school. I guess I was a bit lonely. I found my crowd on the internet. I started staying up all night, chatting, playing games. Of course, I’d be dead tired the next day, which is very normal, but the sleep deprivation also led to just really frequent respiratory tract infections. I had the cold, the flu, whooping cough, bronchitis, sinus infections. When one ended, I got another one. This kept on going for a few years. I didn’t think of it as fatigue or anything special. I was in quite poor health, basically.

Dan: What did your parents and doctors say at the time?

Oda: Well, my parents were really frustrated that I wouldn’t go to bed at night, or I’d be really hard to convince to have a regular sleep schedule. I’d sort of sneak up and be up at night. And so, of course, that was terrible for them, and they were worried about my recurring illness.

The doctors, I mean, I went through the regular tests and bloodwork and everything. Everything was normal. I was just having these infections.

Dan: It’s kind of a bit of a curse of the generation, isn’t it?

Oda: Yes, absolutely.

Dan: The allure of the internet and online communities. They can be wonderful. But, also, they can be unhealthy. We’re crouched over our computer in the middle of the night, and it’s easy. You just want to keep going, and keep going, and keep going.

Oda: Yes, especially for an immature mind. I was in the middle of my teenage years when I started having these habits and I didn’t have the maturity to understand the consequences of my actions. I was just doing my thing, you know.

Dan: Yes, for sure. I guess the thing is, if you catch up with someone face to face, then mum will kick you out – like, at 9:00 or 10:00.

Oda: Yes, it’s regulated.

Dan: Yes, how can you regulate someone’s phone, you know? They’re sneaking it into their bedroom.

Oda: Yes, I bet it’s even worse now because back then we didn’t have smartphones. Teenagers didn’t have smartphones, but now you can lie in bed.

Dan: Absolutely. It’s funny, ten years and you’re old, but back then, how quick it goes!

Oda: I know. I feel young and old at the same time just because the development is just going so fast.

How Oda’s condition became significantly worse & the onset of POTS

Dan: The pace of change – absolutely.

You were a bit sickly. You were run down because you were not getting enough sleep. When does this turn into something else? What happened? What age did you go, “Hang on, this is getting worse”?

Oda: Yes, this inexplicable frightening part of it started when I was maybe 18 or 19 years old. I had graduated from school. It had been maybe three or four years where I was frequently ill and not getting enough sleep and struggling with participating in just everyday school and extracurricular activities.

But then, when I had graduated, I came back to Norway – I had been abroad for the last two years of high school. I just felt really tired. I was fatigued. I had POTS syndromes. I would get really light-headed, and I couldn’t stand upright for a prolonged period of time. I had to sit down, and I was just unable to be standing.

Dan: What would happen if you stayed standing?

Oda: Well, it wasn’t dangerous. I never passed out. I just got so tired, and my heart started racing, the longer I tried to sort of fight it, if I had to stay standing, and I started sensing. I started being very aware of these symptoms.

Dan: And then, what happened? Did you go to a doctor?

Oda: Yes, at that time, this kept on for maybe a year. During that year, I also developed really what felt like really unregulated blood sugar. I’d go out of the door and just do regular errands. And then, it felt like my blood sugar just dropped and I’d get shaky. All I could think about was just getting home. This also got worse if I hadn’t eaten for a while. It probably had something to do with blood sugar, but it was also much more, and I’d throw up because I was just shaking and so unwell.

And so, I went to the doctor for this because it started to get really scary. This isn’t normal. I thought, “Something is wrong with me.” I went to the doctor and she couldn’t help me. She just sort of brushed it off because it didn’t seem really serious or anything.

Dan: What about the tachycardia syndrome – the heart symptoms? Did they check that out? Did they investigate that?

Oda: No, because I wasn’t aware of it – sort of. I just said I was tired, and I had to sit down, and I got dizzy. I wasn’t able to stand up.

Dan: Isn’t it interesting? We first start to experience symptoms. Later on, we know exactly what we’re having. But, at the time, it’s hard sometimes to connect and evaluate and communicate what you’re going through. You just know something is wrong.

Oda: Yes.

Dan: It’s really something. I mean, given the fact that you’d been sickly for four or five years, for you then to say, “Oh, something is really wrong,” it must have been pretty bad. You know what I mean? It’s not like you would have just been having a bit of a sore throat.

Then, what happened? Did it keep going? Did you get more symptoms? Did you see another doctor?

Oda: I had really this achiever mindset. It was important for me to achieve and to be sort of up there in the top performers. I just clenched my teeth and tried to do whatever it is I wanted to – but, of course, I was fatigued, and I wasn’t able to participate as much as I would. I pushed myself really hard, and got worse and worse, basically.

This just kept on going until 2017. Each consecutive year was worse than the one before. I was worse. I had less energy, less ability to do the stuff that I had done before.

Dan: Did you stay connected with a doctor? At what stage did they then diagnose you with POTS? Did they diagnose you with CFS? What did they say?

Oda: No. Well, this had been going on for quite a few years by then. In 2015, I was really down in the dumps. I was depressed and wasn’t able to do anything, basically. I was studying, but I didn’t go to school. And so, I went to a doctor to get my bloodwork done.

Dan: 2015, is that right?

Oda: Yes, 2015.

Dan: At this stage, how old were you then? 22? You must have been sick for about three or four years?

Oda: Yes, but during those three or four years, they were sort of the best years of my illness. The worst had yet to come. And so, it was just inhibiting me from being sort of my most active self, but I was still doing stuff. I was still studying and still participating and things. I was just really tired all the time and had these symptoms.

But then, it just went downhill, and I went to the doctor because I was depressed. I wasn’t participating. I felt really, really tired. And so, now I couldn’t fit my situation into sort of this narrative of “I’m sort of like a weakly person. I’m a person who needs to be protected. This is just who I am. I’m just a bit less strong,” if you get what I mean. This time, I realized, “Wow. I’m sick. I’m ill.”

Dan: You can’t talk it away anymore. You can’t justify it or rationalize it. It suddenly hits you, doesn’t it?

Oda: Yes.

Dan: What was it that made you suddenly go, “Hang on a sec. I’m really ill. This is not normal”? What happened? What was that?

Oda: It was gradual. I had become concerned about health. Because my health was bad, it sort of became an obsession of mine, and I became really interested in nutrition and supplements and all that kind of stuff. “Is there something I can just put into my body to make my spirits rise high?” But, of course, there was nothing.

Oda realises that she has Hashimoto’s

In exploring and reading, I sort of came to the realization that I wasn’t well. It turned out, with the bloodwork, that I had hypothyroidism. It’s autoimmune hypothyroidism – Hashimoto’s. And so, it probably came as a result of just this really stressful situation that my body was in. That’s my hypothesis, anyway. It’s just my layman’s hypothesis. I can say for sure that I did not have it several years earlier, so this was something that developed during the time that I started getting fatigue.

I do have hypothyroidism now. And so, it’s something that I take Thyroxine. I take that every day now. Then, that was my explanation – that’s why I’m fatigued all the time. And so, that became another obsession. I had to find the right dose of medicine, the right kind of medicine, then I would be healthy again, and I would feel great.

Dan: When did you reach your low point? When were your symptoms at their worst? What was that like?

Oda: That was in the first part of 2017 – the middle of 2017.

Dan: What kind of symptoms did you have besides the fatigue and the POTS symptoms?

Oda: Well, I guess I had a really dysregulated body. My digestion wasn’t working as well as it should have. And so, I had digestive complaints symptoms.

Dan: Was it like constipation or diarrhea or pain?

Oda: Yes, constipation and being bloated. Like, having the sense of unwellness. There’s something about it. I can’t quite put a finger on it. The reason I know that now is because I don’t have that anymore, so I know that something was up. I was just hypersensitive to everything – lights, sound. Any sort of sensory stimulus would just put me over the top.

At my worst, I was anticipating my symptoms and I was experiencing symptoms just from loading the dishwasher or washing my hair. And so, most of the time, I would avoid just doing that, so I couldn’t go outside. If I did, I knew I’d be tired. Of course, I did sometimes, but usually I just stayed inside. I was lying on the couch.

Dan: Couchbound. Are you still speaking with your doctors? You’re on thyroid medication. What did they say? This is not normal with somebody who’s just got hypothyroidism and who’s taking medicine.

Oda: Right. Well, in the time after my diagnosis, I switched doctors a couple of times just because I was moving and also just to try and see if there was someone who could give me the right protocol, but I wasn’t that much in touch with my doctors.

What happened was, at the end of 2016, I moved to a completely different part of the country. And so, again, I’d just brush my teeth and do my thing. Me and my ex-boyfriend, we had bought a house and moved to this completely new part of the country, or a different part of the country that was new to us, and we didn’t have any contacts there, so we tried to establish ourselves in the community. I worked part-time. I couldn’t work full-time because I was too tired for that, but I worked part-time. I was really pushing myself to make this change in our lives work out. We were also trying to renovate our house, but we didn’t do much of that. And so, that was the final push that really got me over the edge.

Dan: That led to you being couchbound?

Oda: Yes.

Dan: Then, did you have to give up your part-time work?

Oda: Yes.

Dan: What was that like – that moment? How do you make that decision?

Oda: Horrible. It was horrible.

Dan: Once again, no denying that you’re ill then, right?

Oda: Yes.

Dan: It’s very interesting, in the stories, we try and rationalize it. “Oh, but…”

Oda: Yes. “I’ll just do this, and I’ll keep on going,” and then, suddenly, you cannot deny it anymore and you cannot hide it either because I was ashamed that I wasn’t performing as well as other people around me, so I wouldn’t really reach out to people. I would just sort of internalize it and just keep on doing my thing and not talk to people about it.

In June 2017, I was really lucky because, when I was at the end of my rope, the school semester was ending, and I was working part-time in a school – a kindergarten. And so, that aligned really well. When I went to my doctor to get medical leave, then the school semester was also ending, so it sort of worked out nicely, but it was horrible because I was really depressed.

Dan: If you’re going to the doctor and you’re getting medical leave, did he not seek to give you a diagnosis?

Oda: Yes. At that time, I had reached out to my family and I said, “I’m not well. Something is wrong. I’m just not able to exert myself and I’m not able to do the stuff that I’m supposed to do – like, just have a regular job.”

Dan: Like, wash your hair.

Oda: And wash my hair!

Dan: I solved that in my own way. But, you know, we all get through this illness in our own strategy. When I started with the illness, I had a full head of hair, you know what I mean?

Oda: And so, my dad suggested, “Well, this sounds like MECFS. Let’s try and look into that.” And so, when I went to my doctor, I suggested that – well, when I went to the doctor the first time, I was just bawling. “I can’t do this! I don’t know what’s wrong! I need a leave. I just really need a break.” And so, I got the break. When I came back to the office, I suggested, “I would like to be referred for a specialist – seeing if I have MECFS.”

Dan: What happened there with the specialist?

Oda’s turning point for recovery from ME/CFS & POTS

Oda: Well, this is where the story starts, right? At this point, I was researching. My dad was researching. I was looking up CFS treatment. I was Googling CFS.

Dan: Was this before you saw the specialist or after?

Oda: This was before. This was at the beginning of July 2017.

And then, I Googled CFS Recovery. And then, you know, a really great page came up in one of the top hits, and that was CFS Unravelled. And so, I started looking into it, and I watched the first introductory video of ANS Rewire. Just hearing someone say something in a way that I could understand. “Well, this makes sense.” And that also gave me an agency. Well, the shift started from day one.

And so, to sort of jumped over the whole ANS Rewire part, I was referred to a specialist. But, of course, I was on the waiting list. This was in July. I got my appointment in November. When I came to the office in November, my recovery had come so far that I no longer qualified for a diagnosis anymore, and I was just chatting with the doctor, and she was really happy on my behalf and was really curious. “What kind of program were you on?” so I gave her all the info and everything. We were just having this really nice chat.

Dan: That’s one way to go about it. Did she recognize? Did she say by what you said that you had CFS? Did she give you a diagnosis?

Oda: No. I mean, my general practitioner who I went to the first time, of course, he put down MECFS – or whatever it was – in my journal. When I was with the specialist, of course, she couldn’t say anything about me being sick because I wasn’t sick anymore, but she did acknowledge my journey and that was sort of like my recovery was real – which was, of course, nice to hear.

Dan: Fantastic! Well, it’s kind of strange, you know. The sad thing is that this strange story is the normal way that people have it. You know, just go to the doctor and get diagnosed straight away and recognize what’s going on. Instead, most of us tend to sort of have mediocre confusing experience and just push on and push on, and kind of never acknowledge to ourselves that we’re sick because, if the doctor doesn’t say you’re sick or doesn’t make a diagnosis, you kind of think, “Well, maybe I’m just not feeling good,” until you get to a point where we can’t wash our hair or we can’t leave the house and then suddenly it’s there. You know, for somebody who hasn’t had chronic fatigue syndrome, how would you describe the fatigue? What did it feel like at your worst?

Oda: Well, it just envelopes you. My perception was fatigued. It’s not just that I’m the person that I am today, and I was feeling really tired because I can feel tired today. I can go for a really tough workout, or I can do stuff that’s exhausting, and that’s normal, but I will still be the person I am now and just feel tired. But, at that time, my perception was different. I just felt really ill, and my thoughts were slower. My thoughts were limited.

Dan: You were having brain fog symptoms.

Oda: Brain fog symptoms which I didn’t really recognize. I didn’t identify that much with having brain fog because I felt that my mind was working, but I didn’t read books. I love reading. I read a book a week. But, at that time, I didn’t read anything. Of course, the physical fatigue is just so extreme that any small exertion, any small rise in heartrate, or pushing against something just would knock me down and would make me feel like I had just run 5K.

Dan: How long would that knock you down for?

Oda: Usually, the rest of the day. And then, the next day, I would just wake up just as tired as I had been the morning before. My baseline level of energy would never get normal. I would always be below normal every day, but then I could go even lower than that if I exerted myself.

Dan: Did you find you got other symptoms? Like, sore throats, swollen glands, feverish, or anything like this?

Oda: I didn’t have that much immune system symptoms – not that much.

Dan: It was mainly in regard to the overwhelming fatigue and then also the sensitivities to the lights and sounds and all of that.

Oda: Yes, mainly.

Dan: You found this program. You had tried all these things. Obviously, it resonated with you. I guess one of the things I noticed about you telling your story is this lack of – well, I don’t want to say “acceptance” but – recognition of what you were going through at the time. I can see now that, in hindsight, you can see it, but it sounds to me like, at the time, you didn’t. You’d been sick already for like a decade, right? How would you know? It’s like that story about the frog. You know, when he dunks into the boiling water, he jumps straight out, right? But, when you just heat the water up slowly, he cooks.

It’s that story about the frog. I can very much sense that with the brain fog. It’s like you’re normal. There’s nothing wrong with your brain.

Oda: Yes.

Dan: You don’t know because, if it happens overnight, you go, “Oh, my god, my brain is not working. I can’t concentrate. I can’t think. I’m in a fog.” But, when it’s over ten years, you know, clearly, you recognized it at the other end. As you started to become better, you would have started to notice just what was wrong beforehand.

Oda: Yes.

Dan: What was that like?

Oda’s experience with recovering from ME/CFS & POTS

Oda: Well, getting better, I realized how ill I had been and that there would always be a level of well-being beyond what I could imagine. And so, every time I got better during my recovery, I had to redefine my definition of wellness because I knew that, well, if I got here, I could get even further. And so, the point I was at before must have been really low. It was just a really great experience. Life-changing, of course.

Dan: You especially like saying to recognize that you had brain fog and that you are now able to engage. Was it a shock? Was it a surprise? Or did you just suddenly go, “Oh, this is nice!”? What’s that like?

Oda: It was a bit like, “Oh!” because I started becoming curious again. I started opening up online. This was all part of the process of also getting to know myself better, and understanding in what ways my personality had imbalances, and getting to the root of things because there’s almost always a layer. You can always peel off a layer and get even deeper.

And so, I started opening up my mind and becoming more curious. I started reading and I wanted to do new things with my life. Suddenly, I realized that now the vision I have of the future is different than the vision I’ve had previously. I finally started to believe in the future because my mind sort of just opened up.

Dan: Yes. Well, different possibilities. If you can do more than wash your hair, then maybe you can do everything else in life.

Oda: Yes.

Dan: It must be confusing for the people around you, no? After knowing you all these years, and then you’re suddenly becoming energized and dynamic. What are they thinking? What are they saying to you?

Oda: Well, the situation I was in at the time, I was with my ex-boyfriend. And so, during my process of recovery, I realized that this relationship was no longer beneficial to me. And so, that was a really tough choice. I had to make a choice because it was either to not recover fully and stay in the relationship, or to actually make a change in my life – a difficult change. I don’t like conflict. I don’t like the difficult parts of social relationships, but I let that relationship go, and that was a really huge part of my recovery – making that huge step. We were no longer compatible. I had changed.

Dan: Yes, I can imagine. It’s like a different person. How do you think you changed – besides the energy and the dynamics and all of that?

Oda: I started seeing some parts of me that I had identified really strongly with and that attitude that I had had to those parts that maybe that wasn’t as beneficial as I had previously thought. And so, my identity was really centred around achievement, intelligence, being really good at stuff, and not admitting to a weakness or being vulnerable and so on.

Dan: It sounds like a tough job when you’re on the couch and can’t wash your hair.

Oda: It was just the clash of two completely conflicting ways of being. And so, being like that was just impossible. During the program, I was made aware of this, and I thought, “I want to have a more balanced personality. I want to be able to experience being vulnerable and experience appreciating other things in life than just being smart or accomplishing things because that’s empty. There are so many other things.”

Dan: You know, people listening who don’t know what ANS Rewire is, I mean, you’re talking about these changes in personality and balancing personality and changing as a person, but – hang on – this kind of sounds like you’re saying it’s a psychological illness. How does that work? What would you say to them? How would you describe what the ANS Rewire program is or what you did to recover in a way that they can understand?

Oda: Well, I think what I did to recover was I had a shift in perspective. The symptoms I was experiencing was not from some external cause over which I had no control, but that I allowed myself to think that I was quite unlucky, but also partly responsible for getting better. And so, if I was to recover, I would have to take an active part in that recovery. I would have to be one of the moving forces of that.

Dan: This is the problem, isn’t it? I’m sorry if I keep going back to washing your hair. I guess I’m obsessed with hair.

Oda: It was horrible! It was just really frizzy!

Dan: But the other thing is, if you can’t do some of the basics – like, looking after yourself in your own home, or leaving the home – you know, how are you supposed to get well? It seems like such a difficult thing to do. How are you supposed to take responsibility? You’ve got no energy to do anything.

Oda: Yes.

Dan: Now, you had been on medication and things like this, and you tried supplements and diets. Nothing had really worked. You go on the ANS Rewire program. For someone who’s not in the program, what kind of things did you do? Did you do physical strategies? Did you see a doctor? What did you do?

Oda: I changed the way I related to my symptoms. I’d say that’s the main part. But, really, in practice, I watched the videos and I put my full faith in the program, and I think that’s really important. When you say that, you sound like this crazy overzealous cult follower – like, “If you’re ill and you’re not recovering, you’re just not doing it well enough and you’re not being in with the program” – but I really do think that it’s super important to have faith because faith is hope, and hope will give you profound shift in how you relate to your illness.

Dan: Yes.

Oda: And so, yes, I went all in. I meditated daily to call my arousal and give my brain a chance to make positive changes in the way it responded to symptoms, basically – stimulus, yes.

Dan: Okay. I trust you obviously kept taking your Thyroxine medication.

Oda: Absolutely, yes.

Dan: Did you make other changes to your diet or to supplements? Did you use any other physical strategies?

Oda: Not in the sense of changing anything when I started the program because I had already been obsessed with diet and nutrition and everything like that – for several years already. If there was something I could do on that front, I was already doing it, I’d say.

Dan: You had all the foundations in place.

Oda: Well, just a few of them on the diet side, yes.

Dan: If someone were to ask you and say, “So, ANS Rewire, what’s causing the illness then? What you’re talking here, how can that possibly make you well when I’m physically ill?” I mean, you ended up with issues with your hormones and lights and energy and your digestion. None of that is imagined. That was all real. How would you explain to them the theory behind this?

Oda: Well, the way I’ve understood it – during my recovery and also after – I’ve been interested in sort of figuring out, well, what is this thing? Well, these symptoms – whether you like it or not – they are created by the body – the brain. My brain controls my heartrate. If my heart is pounding faster, that’s because my brain is sending signals to make it pound faster and so on. if something is dysregulated, it means that signals are being sent from my brain that are making it dysregulated. If the problem exists in the brain – or in the nervous system rather – then that’s also where the cure is. It’s in changing the way these patterns express themselves. The wonderful thing is that you can do that through conscious intervention.

Dan: I love the way you chose your words there? Because it’s not psychological, is it?

Oda: No.

Dan: It’s a physical illness. It’s not like you’re depressed. Therefore, you’re making a heart go all racy. I mean, you couldn’t do that if you tried, right?

Oda: No, I couldn’t.

Dan: You know, you literally couldn’t do that if you tried. It’s not people’s fault. It’s just that the nervous system basically goes havoc, and the opportunity is there can be psychological and there can be physical strategies. Lot of things can impact the nervous system which is why people recover in so many different ways, but understanding how is really, really important. I sense that, clearly, when you speak about faith and confidence, really, in the process, it makes it a lot easier when we’re not dominated by feeling fear because it’s a pretty scary experience.

Oda: Yes.

Dan: I mean, standing up, your heart is racing, can’t get off the couch. You know, you have to go to the doctor and say, “I can’t work anymore,” and you’re 23 or 24 years old.

Oda: I was terrified.

How Oda dealt with setbacks during her ME/CFS & POTS recovery

Dan: You know, you’re supposed to do that in your 70’s maybe. Do you find that you had setbacks with your recovery?

Oda: Yes, I’ve had setbacks in the sense that I’ve sort of plateaued and not experienced progress for a while. And then, of course, whatever symptoms I experienced, that would be sort of disconcerting and not very encouraging.

Dan: How to keep your faith, right?

Oda: Yes, I tried.

Dan: What happens? What did you do in those moments when those demons come to you?

Oda: I went back and viewed the videos in the program. Also, I had this little band on my shoulder. “What would Dan say about this?” Well, he’d say that this is just a completely normal part of the recovery phase. Take it in your stride. Be kind to yourself. Keep on doing the stuff that got you here because it will keep on getting you further.

Dan: The little Dan voice, do you think that morphed into your own voice?

Oda: Yes, it did. Now, it’s my own voice. When I talk to myself now, I’m sorry to say that you’re not as present with me now as you were then, but now it’s just me.

Dan: Awesome. What was the biggest challenge for you with the program and recovery?

Oda: My biggest challenge? Let me think about that for a while. Wow. Maybe you can prompt me? Or come with some suggestions of what might have been my challenge? Because I can’t really.

Dan: No, that’s fine. It’s not something that we have to have an answer for, you know. Perhaps there’s a lesson in that – you know, in the fact that you didn’t feel overly challenged. I mean, clearly, you had things that were difficult. You know, you talked about changing your whole identity and your whole personality. You had all those fears, but yet you don’t feel obliged to mention them. It’s almost as if you just – I don’t know – you just kind of worked around it. I don’t get the sense that you did overwhelm. Would you say that’s true? Or am I misreading that?

Oda: I didn’t get overwhelmed by the program, but I was really lucky in where I was in my life because I could take medical leave and just double down on the program and focus entirely on that, and I did. That was the only thing I did besides just really, really small things otherwise in my life.

My challenges were the illness, not the program.

Dan: Yes, I like that. That’s a great way to look at it. At what stage did you go, “Oh, my god, this is really working”? Did you go, “Oh, my god, I’m actually recovered now! Am I recovered now? Is this what recovered is?” Did you go through that?

Oda: Yes, I felt that it was really working just a few weeks in, and I knew that because I did the video diary.

Dan: Yes.

Oda: One of the prompts for doing the diary is how much faith do you have in the program and that you will recover. In the beginning, I definitely had faith, but I didn’t have any proof, but I had faith. But, after actually getting proof that this might work and this might be making me a lot better, then I couldn’t stop smiling when doing my video diary. Like, “This is going to work!” I had 100 percent confidence that this will take me all the way, yes.

Oda’s additional strategies to complement the ANS REWIRE program

Dan: Fantastic. Is there anything else you did during your recovery? I mean, obviously, we have the program, the rewiring, the diet – you know, all the different elements. Did you do any of the shaking techniques? Did you do the postural rewiring? Was that a big part of you? Did you get any other physical treatments from a doctor? Acupuncture? Just anything else you did as part of your recovery.

Oda: I did yoga. I started doing yoga – just with an app on my phone. It’s called Yoga Studio or something. And so, I did small yoga sessions in my living room. That was really helpful because it’s this really calm physical movement that just gets your body flowing, so that was great.

Oda’s experience with cold water immersion for recovery from ME/CFS & POTS

IMPORTANT:
Never practice cold-water immersion alone.  Always check with your doctor before trying any new strategy or treatment
to ensure it is safe for you!

Oda: I swam in the ocean. And so, this was northern Norway, so the ocean is pretty cold. Most of the time, I was basically taking ice baths.

Dan: Yes.

Oda: Not quite, but it was really refreshing, and it really helped me. It was one of those physical things that I found really beneficial – surprisingly beneficial.

Dan: Interesting.

Oda: Otherwise, I didn’t use it as a part of my recovery, but someone I know does something similar to a somatic – what do you call it?

More complimentary strategies Oda engaged in (somatic experiencing)

Dan: Somatic experiencing?

Oda: Somatic experiencing, yes. I had a session of that, and that was really great. If anyone has access to that kind of practitioner, I really recommend it because it felt fabulous. It just had this really great impact on my body and my feelings at the same time.

Dan: What was that like? Can you sort of explain that to people? What do you do there with somatic experiencing?

Oda: This particular kind I think is called Thomas Hanna. I’ll look that up in my deck and send you something afterwards. This kind of somatic experiencing, it was oriented towards – it’s really hard to explain. I don’t really have the words for it, but it’s sort of integrating your movements – moving really slow, so that the map you have in your brain of your body and your muscles gets more detailed. Instead of being a head attached to some sort of physical thing, you sort of become a person inside a body or a person that is a body.

Dan: Interesting.

Oda: I don’t know. It’s great.

Dan: That’s a great way of explaining it. Did you do that often? Did you just do it once?

Oda: I just did it once.

Dan: You found it helpful.

Oda: I did the yoga which has similar benefits.

Dan: Yes, you probably took the lessons onboard from that experience and continued to apply them with the yoga.

Oda: Yes.

Exploring cold water immersion for recovery from ME/CFS & POTS in more detail

IMPORTANT:
Never practice cold-water imnersion alone.  Always check with your doctor before trying any new strategy or treatment
to ensure it is safe for you!

Dan: I might just take a few moments to explore the swims because I think it’s actually interesting, especially given the fact that it’s very cold water. Tell me, what kind of benefit did you have from going into these? Did you find it was stressful going into that cold water? Did you react? Because, you know, we’re talking about having difficulties with sensory stimulus, yes?

Oda: Yes.

Dan: You couldn’t handle lights and sounds and all of these things which is classic in CFS. Then, you’re going into cold water. I mean, how did you react? How did this work?

Oda: I think I already had some experience with swimming in cold water from when I was going to school in Canada. I had done it a bit, and I enjoyed it, and I think I’m able to sort of withstand colder water than a lot of people, but I think it’s an attitude thing as well that you sort of try not to get scared from the cold.

Dan: It’s not that different than the rewiring that we’re talking about. Or when the tachycardia comes up, right?

Oda: Yes.

Dan: You embrace it instead of fighting it.

Oda: Yes, you embrace it because you go into the water and it’s just shocking. Immediately, your diaphragm just clenches up and you can’t breathe, and you start hyperventilating, and your heart starts racing, and your skin starts to feel really cold and tingly. After a while, it just starts to hurt pretty much. And so, it’s a really shocking experience.

Dan: On paper, it doesn’t sound like a great thing for someone with CFS.

Oda: Yes.

Dan: Because, you know, you can’t hack when somebody yells at you, or if there are too many lights. People can’t stand even the slight temperature change, you know.

Oda: Yes.

Dan: Did you have problems with temperature changes too in general?

Oda: Well, I had dysregulated body temperature, so I had really cold extremities, and problems, but just regulating my body temperature, and I got cold a lot.

Dan: You got cold a lot, generally speaking. Did you have pain at all during your years of illness?

Oda: Only headaches. Only just a couple of times or a few times that I had physical bodily pain. Otherwise, it was more of really a lot of tension in my body.

Dan: With all that, we go into the water, and it seems like the worst thing in the world to do, right?

Oda: Yes, it does, but it’s paradoxical. I think, just that it’s so extreme, it makes it easy because everybody reacts when they go into cold water, so it doesn’t seem not normal or unnatural to have this really extreme bodily reaction to it whereas, if you’re being overstimulated by bright lights and everybody else is fine, then you start going, “Oh, what’s wrong with me? This is worrisome.” But, in the water, you sort of have to accept that this is the way it’s going to be, and you are going to feel these symptoms and you just have to accept them. Afterwards, I just feel serene – like, serenity. It just feels wonderful.

Dan: We say we have to accept it because, if we don’t accept it and you go in and it’s so cold, it’s like, if you don’t accept it, you are going to go crazy, right? I mean, this is terrible.

Oda: You just go right out, yes.

Dan: You can’t handle that, right? The only way you can handle it is to submit to that experience of the cold and, instead of fighting that cold and bracing against it and trying to push it out, you kind of go, “I submit. You take over my body, and I can’t do anything about it,” right? You relax.

Oda: That’s really, really well put. That’s the way I feel it is.

Dan: By the way, I don’t do cold water swimming at all. I’m wondering if people can recognize how this is actually quite similar to the neurological training and brain training strategies that we’re teaching you inside the ANS Rewire program. It’s like rewiring on steroids because you’re being forced to rewire.

Oda: You say, “I can’t stand this. I’m going to get out of the water. This is frightening. This cold water is harmful to me.” But, when you’re on land and you get these kinds of symptoms, there’s nowhere to go because you’re in your body. In the water, you have the option to exercise your skill at accepting it because you have the option of going somewhere. You can go on land and get warm and dry, but you can also stay in the water and accept it.

Dan: How did that impact you? The first time you did it, was there a shift? Was there something that happened? Or was it the regular? I mean, you didn’t make a big deal out of it. You just mentioned it, so I’m just trying to explore it.

Oda: Yes, I really felt great after doing the cold-water swims. This was when I was almost at my worst. I can’t work. I can’t do this and this and this, but I can shock myself in cold water. What is this? Why do I feel better after swimming? Or just being in the cold water? And so, I started doing it – or I tried doing it every day, but it lowers your body temperature, so it wasn’t sustainable to do.

Dan: Not ideal with the hypothyroidism, is it?

Oda: Well, that’s regulated with the medication, so I don’t have any hypothyroidism problems, luckily.

Dan: Fair enough.

Oda: But I tried doing it regularly – on a weekly basis – because I enjoyed it so much. That became an important part of being active and starting to enjoy more activity. Just knowing that I can do this, and a lot of people can’t. It’s hard, but I’ve done it. It became the source of confidence and trust in my body that I can handle stuff.

Summary points about Oda’s recovery from ME/CFS & POTS

Dan: Yes, absolutely. I find that extremely interesting. How long did it take you to make a full recovery?

Oda: It depends on what you define as a full recovery. I’d say now it’s 100 percent. I’m so happy to say that. But I’ve been symptom-free for a long time now. I’ve not had problems with tachycardia bouts, fatigue, or anything like that. I’ll try to break it down. I was maybe 50 to 60 percent recovered just after a few months.

Dan: Three months? Four months?

Oda: Yes, three or four months. When I came to the doctor’s office, I couldn’t get a diagnosis, right? And I didn’t want one because I had recovered from the physical symptoms.

Dan: Even the tachycardia had stopped at this stage?

Oda: Well, it’s not like everything had stopped. It’s just that I could be a lot more active. I wasn’t as sick or as ill. But then, sort of getting back into the world from not having engaged fully with the world for such a long time, and also having these root issues of anxiety and that kind of thing, I had to work on that, and gradually increase my confidence in being a part of the greater world with all its challenges and all the things that you have to do to have a normal existence. I started studying, but I didn’t study full-time, but now I do. I took things gradually.

I’d say maybe about a year. Maybe it took about a year for me to recover enough to say that I’m fully recovered now, and then one and a half years to where I am today to say that I am so much better off now that I’ve never been better in my entire life – even before I started identifying as being sick in some way.

Dan: That’s interesting. Really, it took a year to become symptom-free, but there is still a shift in vitality, isn’t it?

Oda: Yes, that’s a good word.

Dan: But then, you know, people often describe it and say, “I’m 100 percent recovered,” and then I speak with them three months or five months later, and they go, “Now I’m 120 percent recovered.” It’s not that you were sick per se, but now you have more energy, and you don’t know what is full energy until you have more because you haven’t had it, right? You haven’t had it since your childhood. That is really quite a typical sort of experience.

I think having that shift in those first three or four months certainly strikes me as having been very important for you because it gave you the confidence. Even though it took a year to become symptom-free, you had a strong sense of confidence because you had a big enough shift, and not everyone has that. Some people take a while, but I always encourage people to seek that initial shift because I think it’s when you get that that you know you’re on your way.

Oda: Yes, because when I started getting better, I knew that it would just keep on going. Even though I wasn’t super happy about not being able to engage in everyday activities, I knew that, well, at least I’m better than I was. If I just give the process more time, then I’ll get even better.

Dan: I think it’s really interesting how you described it as anxiety and to be able to do things and engage in things, I know that everyone with CFS knows exactly what you’re talking about, and everyone without CFS is probably looking like this, you know? Because it’s like, “What do you mean?” It’s not whether you can or can’t do it. Of course, you could have done it, but what were the consequences of doing it, you see? I think this is really where the recovery can be measured.

We can live in this bubble where we don’t do all those things, and you’re feeling pretty good – like, even symptom-free – but is that recovered? I would say, “No, it’s not recovered because, if you were symptom-free but then, if you do go socializing and camping on a weekend or whatever it is that you do, and then you get sick, well, then you’re not recovered, right?” And so, it’s the building of “I feel well” and “I’m symptom-free” but you keep growing your engagement in life until you get to a point where you’re like, “Well, I’m doing everything everyone else is doing. In fact, maybe I’m doing a little more.” That’s really that journey. Would you say that’s true?

Oda: Yes, absolutely. It’s just this feeling of expansion and that my engagement with the world is expanding, and I’m getting to my natural limits. It feels sort of strange to say, but at some point, you will sort of become – I don’t believe in this essential self and that you just have to find it or something. I think the self is something that develops through what you do and your interaction with your environment, but I think I’m expressing more of that essential quality now.

The reason that I perhaps chose not to engage in something is that, well, I’m enjoying something else. I’m an introverted person. I like reading books. I like staying home on a Saturday night. I’m not into partying and that kind of stuff, but it’s not like I’m not going to parties because, if I did, I would become ill or something. It’s just because I enjoy doing the things that I choose to do.

Dan: Yes. Having said all that, have you had particular experiences that you go, “Wow! I can’t believe I’m doing this. This is real proof that I’m really well – that I don’t have CFS anymore”? Were there particular moments? How long ago would you say it is now that you’ve been recovered? It’s a year and a half now since you started the program, is that about right?

Oda: Yes.

Dan: Especially in the last six months, have you had some experiences where you go, “Wow! I can’t believe I’m doing this”?

Oda: Well, I’m studying full-time now. When I started in the program that I’m in, we had these two weeks of getting to know each other and everything. As I said, I’m not a very social person, or not a very extroverted person, and I went to parties almost every night. I stayed up late and I was doing all the things – you know, drinking alcohol and everything, and eating absolutely horrendous food, and just doing all the things that I shouldn’t do, but that was exactly what I was supposed to do. I was so happy that I could engage in that sort of thing without being worried or having any reason to worry.

Dan: Do you think that was an important part of your recovery – to actually do terrible things like this – the wrong things – and to come out the other end? Do you think that was important for you?

Oda: Yes, absolutely. It’s been really important for me to do stuff that I’m not supposed to do, so that I don’t have this feeling of like, “Oh, I have to watch out,” so I don’t do X, or I don’t do Y, Also, with diet and stuff, I used to be super concerned about everything, basically.

Dan: Because it had an impact.

Oda: Yes, because it had an impact, but sometimes also because I thought it had an impact. Like, I had read someplace that this and this is bad for you, and this and this is good for you.

Dan: You can go beyond what we experience. It can become fear-based, right?

Oda: Yes.

Dan: Because you don’t know what’s going on. All you know is you feel terrible, and someone says, “Well, if you eat this, you get sick.” It’s like, “Well, maybe that’s true.” I mean, you don’t know. All you know is you feel sick.

Oda: You don’t know.

Dan: Surely, you just go, “Well, I’ll try not to do that. I’ll try not to eat that.”

Oda: Yes.

Dan: You can become obsessive with that, can’t you?

Oda: Yes, I became really strict, but now I’ve sort of gone the other way. I don’t care. I’ve become much more laidback than I used to be, so I eat whatever. I’m trying to sort of rein that in a bit because it’s having an impact on my waistline, but it makes a point that I don’t really care anymore, and it’s wonderful to be able to not care.

Oda’s closing advice for people seeking ME/CFS recovery & POTS recovery

Dan: That is awesome.

Listen, I guess what I would like to say is probably for people – anyone who is listening – what would you like to say to them? What would be your best piece of advice to people who are still sick? If you want to split that between people who are in the program and people who are out of the program, that’s fine. Or if you have one message to everyone, that’s okay, too. Whatever comes to you, you know. I guess I just wanted to give you that opportunity to reflect for a moment and if there’s anything you’d like to share.

Oda: I think my advice – or not my advice, but message from me to anyone who is struggling with CFS and chronic fatigue syndrome and other related symptoms is that you both can get well – it’s possible – and you will get well because you have it in you. It’s not unequally sort of given out – the ability to recover. Everybody can. I wish that for everyone.

For the people who are in the program, keep at it – you know, even when it feels like nothing is happening, and you’re even getting worse, and you can’t believe that you’re doing this stupid thing and whatever. Just keep on going. Was it Churchill who said, “If you’re going through hell, keep going”? That’s my message. That’s what I’d like to say.

Dan: Fantastic. Thank you so much.

Look, I really appreciate your wisdom and your insights. I thank you for sharing your story. You know, I’m always incredibly inspired. I mean, what a cool thing. What a cool thing to come out the other side of your whole life, your whole youth, and come out with a big smile on your face, and for someone to share their story the way you have, as an introvert, I mean, you know, that’s really great! Good on you! Good on you!

Oda: Thank you, Dan.

Dan: Thank you for sharing and being an inspiration to others.

Oda: I’m just so grateful for being able to be on this side of the screen. It’s thanks to you.

Dan: No worries.

Oda: Thank you so much.

Dan: You’re welcome.

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Karen

What an inspiring story–even though I’m much older than Oda at 61, I finally have hope that I can heal from this heartbreaking health issue after 20 years…I’m just at the beginning of my healing, but I finally see a light at the end of the tunnel, and not just a closed door. Thank you.💖🙏🏽

Sylvia

Love ❤️ this

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