Colin experienced ME/CFS and Multiple Chemical Sensitivities for 17 years and struggled to believe that he could ever get his life back. After learning about the [thrive_2step id=’5710′]ANS REWIRE recovery program[/thrive_2step] he watched the introductory lessons and decided to enrol.
In this candid interview, Colin shares his experience with the program and with recovery from the syndrome.
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Dan Neuffer: If you’ve been ill for a long time, then I’m sure you can appreciate Colin’s reluctance to claim his recovery until it was well tested.
Colin was sick for 17 years with ME/CFS and multiple chemical sensitivities. At his worst, he was bedbound for nine months, and he shares some of his darkest times in this interview. His words were: “I really felt like someone who was depleted and someone whose life is over – at the end stage of life.”
Colin tried many, many treatments. He even tried mind over matter, and attempted to just push with exercise but, of course, that was a recipe for disaster. Eventually, he found some kind of equilibrium where he could somewhat function in life as long as he curtailed every area of his life.
I think anyone that has experienced ME/CFS and multiple chemical sensitivities can relate to his experience with this illness.
Colin recovered using the ANS REWIRE education program for recovery from MECFS, Fibromyalgia, POTS, and related conditions. He didn’t do much besides the program to recovery, and he credits some small dietary changes and the neural training portion of the program for his recovery.
This interview doesn’t have a look of how-to content, but what it does have is it has a story of the human spirit – a story about coping with the darkest of times, about perseverance, and about how to cope with the difficulties of relapses. Colin shares his advice and his message of hope that, even without that silver-bullet cure, recovery is possible.
I hope this story gives you hope and that it uplifts you.
It’s great to have another recovery interview.
Today, I am speaking with Colin from Chicago.
How are you doing, Colin?
Colin: I’m doing great, Dan.
Dan: Awesome. Look, it’s lovely to connect with you again.
I guess the first question I’d like to ask is did you actually see any of these kinds of interviews – or perhaps interviews on CFS Unravelled – in the past when you were still ill?
Colin: No, I never saw an interview with anybody that recovered, I don’t think.
There were a couple of books out that were written by people that recovered, but not an interview.
We’re going to talk a little bit about your journey – when you got ill and all this kind of thing – but, if you never saw anyone else recover, did you come to a point where you were thinking it was possible? Had you ever heard of anyone who’d recovered? What were your thoughts on that?
Colin: Well, I was pretty frustrated, but I think I always held out hope that things could be better. I don’t know that I ever thought I could recover, but I always held out hope that things could be better, that I had some glimpses of better.
Dan: Right, because that’s what happens when we’re ill, isn’t it? Sometimes, we feel a bit better, then we feel a bit worse, then we feel a bit better. It’s sort of a bit of a rollercoaster ride, isn’t it?
Colin: Yes, definitely – definitely a rollercoaster.
Dan: How old were you? How long ago was it that you first started to get unwell? What happened?
How Colin’s ME/CFS starts
Colin: Well, I was in my early 30’s. It started out, I had chronic sinus infections for a long time. I was dealing with that. Chronic sinus infections come with pretty severe fatigue, but after I resolved the sinus infections, I realized, you know, I didn’t have sinus infections, but I had this debilitating fatigue. I call it malaise.
You know, fatigue just doesn’t do the suffering justice. I’m fatigued now, and I’d love it. You know, I’m tired. I’m going to go lay down and it’s going to feel great. I’m going to rest up. You know, that’s fatigue. You know, chronic fatigue, you know, you suffer from a real malaise. The fatigue is so intense.
Dan: You’re absolutely right. It is such a different experience, isn’t it?
This is why people often don’t like the words “chronic fatigue syndrome” because it sounds like you’re tired, you know, so go have a sleep.
Dan: I mean, tiredness doesn’t really cover it. So, what happened then? You went back to the doctor, I assume? What happened? How did you end up progressing with that?
Colin: Well, I was really disappointed that, you know, resolving the sinus infections didn’t resolve my illness, so I started looking for answers. I tried a couple doctors. Eventually, someone had suggested it might be chronic fatigue syndrome, so then I started to pursue that path.
The rollercoaster of ME/CFS – becoming bedbound
Actually, after the sinus infections cleared up, I felt a little better for a while, but then things just started to go a lot worse and I just started to get more and more fatigued and more and more weird symptoms. The sleep disruption – you know, not being able to get restful sleep – goes hand-in-hand with the fatigue. And so, that got worse, then I got weird eczema. I was having herpes, cold sores flare up, and then I was having digestive problems, chronic constipation. Things got a lot worse. I was able to get out of bed and get something to eat three times a day, but then I just went back to bed and laid there.
Dan: Wow. That’s obviously very severe.
How long were you in such a severe state for?
Colin: Well, I was doing the “get out of bed three times a day” thing for about nine months. I can tell that year because you look at my tax returns and it’s like I’m making a living then, all of a sudden, I just stopped, and I was self-employed. I’ve always been self-employed, so I just wasn’t able to work that year.
Dan: Were you single at that time? Were you married?
Colin: No. Luckily, I was married throughout this whole thing. Luckily, I’ve been married.
Dan: What was your wife thinking? I mean, it must have been a shock to her.
Colin: Yes, she was really understanding. My wife has been really super understanding and compassionate. I think it took a while for her to understand my limitations, but eventually she did. You know, I really wasn’t able to do anything. I wasn’t able to go out and be with friends. You know, my wife is social. She has lots of friends. I just wasn’t able to participate in that very much – you know, vacations.
You know, when we went on vacation, I would end up in the hotel room – in bed for most of the vacation. They were no way fun for me. I was suffering and I’d rather suffer at home without spending a couple grand to go somewhere and suffer there.
Dan: Absolutely. I used to have the same experience. Not only could I not afford the holidays already because I wasn’t making virtually any income, but then you’d go there and now you’re sure you used to get worse.
Dan: It was no fun. My first holiday where I didn’t have that – I have to say – was a remarkable experience because suddenly I could understand the motivation when my wife won’t go with us.
Colin: Yes, and you want to be a good sport. You’re with a well person who wants to take a holiday, you know, so you wouldn’t want to deny them that. But, at the same time, it’s really not a great idea.
Dan: Not a great idea at all.
How doctors responded to Colin’s initial severe phase of ME/CFS symptoms!
Dan: What were your doctors saying when you were so ill? Did you see the doctors during that particular nine-month period?
Colin: Yes, that was frustrating. Nobody had an answer for that. The answer for that was, “Well, as soon as the sinus infections clear up, you’re going to feel great. You’re going to feel fine.” And so, once they did clear up, I didn’t feel great and I didn’t feel fine, and then it was back to square one – trying to figure out what it was.
Dan: We’re talking about months, and then we’re talking about a year. I mean, what happens? Because you were ill a long time. What happens the year after – the year after that? How do you summarize 17 years?
Colin: Oh, man. You know that nine-month period was my worst period but, after that, for several years, I was 50 percent functional, and that had a pretty wide up and down. I would crash and they would take me weeks or months to get back up to a 50 percent level. A crash could occur because of lots of different things, you know – I exerted myself too much, or I had a stressful experience, or I ate something, or it was Thursday.
I used to explain to people that there is an invisible wall and, when I hit that wall, I crash, but I never know where that wall is. That wall could be a block in front of me or it could be a couple of inches in front of me. I would drive myself crazy trying to figure out, “What did I do? What did I do that made me crash?” I walked for two blocks when I should have walked for one. “Did I eat this or that?”
Sometimes, it was obvious. I remember one time I was late for the movies and I ran two blocks to the movies. This was after I had been working to get well for ten years and I was doing moderately well, but I ran two blocks to the movies and then that was it. I was out for a month.
Dan: It’s funny. You know, obviously, I had the illness for seven years, and I speak to people with the illness every day. The way you just put that just puts it back into context just how crazy this whole experience is with this illness. So much uncertainty around it, you know?
Colin’s ME/CFS & MCS Symptoms – Intense Adrenaline Surges and more...
Dan: Obviously, all those years, did you start to get other symptoms besides the ones that you mentioned? Did you get pain or any other symptoms?
Colin: You know, fortunately, I never experienced muscle pain. My senses were—
Dan: They didn’t change over the years? They stayed sort of steady with the gut and the fatigue and the sleep?
Colin: Yes. Well, in the beginning, I had really intense adrenaline surges. At night, I have nightmares as a result of that, so I’d have nightmares that someone was in my house, going to kill me, and I’d just wake up with my heart pounding out of my chest. Every year was different, I would say. Every year, the flavour of misery was a little different. Throughout that time, I was always actively trying something. I was actively trying something to get well. There was no period there that I was not reading, talking to people, talking to doctors, healers. I’d try anything.
Colin’s treatments to try to recover from ME/CFS & MCS
Dan: Well, in two minutes or less, how could you sum up? Otherwise, we could talk for hours. How would you sum up the things, the different things that you tried?
Colin: Well, I tried – I don’t remember the drug but there was some drug – a fairly innocuous drug around candida. There’s a whole candida yeast overgrowth theory. I did that. I dramatically altered my diet.
And then, on the other spectrum, there was low-dose naltrexone – a brain drug.
Dan: What happened when you tried that?
Colin: That felt like speed or something. I felt like I had more mental acuity, I would say, but it didn’t help with the crashes. If anything, it kind of accelerated the crashes because I felt like I was okay mentally and I had energy mentally, and then I would crash physically.
Dan: What other things did you try?
Colin: I tried acupuncture. I went to a chiropractor. For a long time, I worked with a naturopath on adrenal dysfunction and I took a variety of supplements and stuff around adrenal dysfunction. That was helpful. You know, a lot of these things were helpful. They provided some relief – you know, either short-term or small amounts.
Dan: Yes, but nothing lasting?
Colin: Nothing lasting, yes. You know, I tried gritting my teeth and saying, “Screw it!” and fighting my way forward. I tried exercise.
Dan: Pretend like you don’t have it – I’m just going to do it.
Colin: Yes, I’m going to exercise. Through will of brute force, I will exercise through the pain to the other side.
Dan: That didn’t work out too well, I imagine.
Colin: It didn’t work out good at all.
How ME/CFS & MCS becomes a long-term chronic illness for Colin
Dan: How did this whole experience change as months turned to years turned to decades?
Colin: Well, I used to describe myself as a 75-year-old man, but then I started to meet 75-year-old men who were actually in way better than I was, so that analogy didn’t really work, but I really did feel like someone who was depleted and whose life was over – you know, at the end stage of life or something like that.
Colin’s efforts to cope with ME/CFS & MCS
Dan: How did you cope with this? What was your mental outlook through this? I mean, this is clearly a harrowing experience.
Colin: Yes, it is.
I remember someone very close to me saying, “I think you’re depressed,” and I got so angry. I wasn’t angry at them personally, but I just got angry and I thought, “Damn right, I’m depressed.”
Dan: Not happy.
Colin: I am so angry that, look at me, you know? At this time, I was in my late 30’s, and look at my life. Look how limited my life is. If this were happening to you, you’d be depressed, too. I don’t even like to call it depression though.
Dr. Neville from the Clymer Institute. He used to talk about depression. He’d say people with chronic fatigue, you can tell if they’re clinically depressed or not – I’m paraphrasing what he says – by asking them what they want to do when they recover. Most people with chronic fatigue have got a long list of things they’re chopping to get back to or to get active in life. Someone who is depressed really has lost their ambition for life. I feel like I fell in that first group. I’m depressed about my circumstances here, but I haven’t lost hope and I hadn’t lost my ambition.
Dan: I totally appreciate your distinction.
Colin: One of the other things that I did, at one period, my sleep became so deprived that I went to an MD and I literally begged him for some sleep medication because it had been four days and I felt like I had not slept in four days. I begged him for sleep medication, and he gave me Ambien. When I took Ambien, I got a taste of what clinical depression must really feel like because I was walking down the street and I noticed that I was so lethargic and it had this dramatic depressing effect on me. I got off the drug right away, but I had this sense of what it’s like to be truly, truly depressed, you know? Like, really without hope.
Dan: You know, they say that the eskimos have lots of different words for the word “snow.”
Dan: I think people with chronic fatigue syndrome have lots of words for the word “fatigue” because there’s not just one type, is there? There are so many different levels of that. Most people – the rest of the world, I should say – they just know tired.
Colin: Right. Exactly.
That’s why I really do prefer the word “malaise” because I think malaise is that feeling when you’re getting the flu and you don’t know you’re getting the flu but it just feels rotten.
Dan: Did you use to get that toxic feeling as well?
Colin’s experience with Multiple Chemical Sensitivities before he recovered
Dan: You had sensitivities to foods and different things?
Colin: Yes, I like to say I was allergic to everything.
Dan: Right. Like, what kind of things?
Colin: Well, anything airborne – dust, perfume, cleaning materials. You know, the food sensitivities.
Dan: It would just mess with your gut when you had different foods or give you a flare-up?
Colin: Yes, it’d give me a flare-up.
Dan: Were there any particular offensive foods?
Colin: Wheat, dairy.
Dan: With the different allergies and things, again, would you get a flare-up? Or would you just start to get an allergic reaction?
Colin: They’d make me more fatigued and brain fogged. This was a flare-up.
Dan: Did you ever experience even just the smells would bother you? Or lights or things like this? Noisy environments?
Colin: Yes, definitely noisy environments. Yes, I couldn’t be in crowds – you know, too much. Also, I haven’t mentioned, there’s an underlying anxiety too. I think part of it is, not sleeping, you build an anxiety – a level of anxiety. And so, noises and crowds and stressful situations like that.
Dan: But you didn’t get an issue where you would smell petrol or perfume and it’d give you a flare-up or something like that? You didn’t get chemical sensitivities per se?
Colin: No. Well, with perfume or strongly scented household chemicals, they would make me sneeze, my nose would run, my eyes watery, and then I would get stupid.
Dan: You would just get brain fog?
Colin: Yes, it would just have an effect of making me stupid and tired.
Dan: Yes. Did you start to really avoid those types of things? Did you start to really make sure you didn’t get those cleaning products around and people with perfume? Did you start to worry about stuff like that?
Colin: Well, I asked my wife to not buy any of that stuff, not wear that stuff. You know, I wasn’t going out much, so I didn’t have to worry about running into it. But now it’s amazing that I can walk into a department store where they’re spraying all that stuff and it doesn’t bother me anymore.
Dan: That must be weird.
Colin: It bothers me because I don’t love the smell of perfume to begin with, but it doesn’t have any effect on my health, you know.
Dan: Wow. Fantastic.
Let me just take a sidestep and have a look at how did we get to these sinus infections? I mean, did anything happen in the 12 months leading up to this time?
Colin: Well, I had a very dirty job. I was breathing dust and mould and crap all day long. You know, I was working in basements and attics. And so, I had a very dirty job. I didn’t manage myself or my energy very well. I went into these jobs like a kamikaze. I didn’t eat lunch. I didn’t drink water. I just worked straight through until the job was done. So, that seemed to catch up with me eventually in the form of these sinus infections.
Colin: There was one piece that I’ve left out here. When all of this kind of came to a head, I had a very emotionally stressful period and that seemed to turn everything to irreversible. Like, I was no longer getting better when the sinus infection would clear up. You know, I stopped feeling better when the sinus infection would clear up. That seemed to be the turning point.
Dan: Did you have any other physical things happening at that time? I mean, obviously, it was an emotional time. You were exposed to a lot of physical stressful stuff by not eating and not drinking water and working hard in these basements but also being exposed to mould which we know is very toxic and dust and all that. Did anything else happen? Any surgeries or accidents? Were you training?
Colin: Well, I had sinus surgery to correct the sinus infections.
Dan: That basically worked for the sinuses? Is that what stopped the sinus infections in the end?
Colin: You know, I’m not sure if that was it or not. It seemed like I still had them. It wasn’t until I changed the diet and addressed the candida thing that they actually went away.
Let me just ask you another question with your symptoms. Did you do anything with the sleep? Before you had your turning point, did you do anything with the sleep that helped? I mean, obviously, it was terrible at one stage. Or was it just sort of all the time?
Impact of ME/CFS on Colin’s sleep
Colin: There was nothing that I did for the sleep that helped until I took sleep medications. You know, the first one was Ambien, and that was a disaster. The side effects were horrible. And then, I went to Lunesta. I went off those completely and I tried doing supplements – Seriphos. What is it? Phosphorylated Serene. That helped manage the sleep. That brought the adrenalin surges that I was having at night and the nightmares, that really helped with that over time.
Dan: Do you think your nightmares were related to that emotional stressful period?
Colin: No, I think the nightmares were related to my body chemistry being so out of whack.
Dan: It wasn’t like a PTSD type of thing.
Colin: I don’t think the nightmare came and then my heart raced. I think my heart raced because of the adrenalin and that kind of coloured the nightmare. That’s my theory.
How ME/CFS became Colin’s new normal
Dan: So, you’ve tried all these things. You’ve gone to naturopaths. You’ve gone to acupuncture. You’ve seen many doctors. I mean, you’ve contributed to the medical economy for the best of two decades. What was your turning point? I mean, what do you think happened? Did you kind of give up on trying things? Or were you just continuously trying things? Do you think there was a specific thing that was your turning point?
Colin: What do you mean by turning point? I’m not sure.
Dan: Well, I guess you’re going down this road. You’re trying things; nothing’s working – or working very little. And then, at some stage, you know, you end up recovering. Obviously, the ANS REWIRE program was part of that, but I’m wondering, was there anything that happened maybe before the ANS REWIRE program that started to change things or that changed your outlook or that you would try again? Or was it just that you found the program?
Colin: Well, I had what I could call “mini recoveries.” Let’s see. Probably after eight years, I had started to feel good, you know. This was as a result of working with the naturopath and trying the adrenal stuff. But also, prior to that, I had been working on my diet and working with a chiropractor with nutritional stuff. So, I had been working on my health for years. The dietary changes were very positive. It wasn’t like something happened overnight but, over time, you could feel positive effects.
There was this period of time where I felt pretty damn good. I was so excited. I went out and I jumped on my bike and I rode eight miles to work and then eight miles back. And then, the next day, I woke up and it was all back.
Dan: What was that like?
Colin: Oh, that was something I would come to know – something I’d become familiar with – you know, just an unbelievable, deep disappointment. But I thought, “Well, it’s possible.”
Dan: Because you were still feeling better. I mean, there’s value in the fact that, okay, you weren’t actually recovered because you couldn’t actually go and do things. But, if you didn’t do things, you felt better and there’s value in that, isn’t it?
Colin: Yes, absolutely. I didn’t understand. I just didn’t understand at that point in time. I just didn’t understand the cruel nature of this disease where you have these ups and downs. You get teased by these ups. You think, “It’s all behind me now,” and then it’s not. That’s also the reason that I took a good long time in completing the ANS program and declaring recovery.
Dan: Still looking over your shoulder.
Colin: Yes, exactly. So, I just wanted to be sure.
Dan: Absolutely. I totally understand that – having been through all of that myself. And then, you had that similar thing happen again. I mean, that was at eight years. Did you have that happen again down the track later on?
Colin: Yes, there were a couple of times where I felt very good for a short period of time.
Dan: But, as soon as you exerted yourself, you’d be back.
Dan: I guess that’s really the key, isn’t it? Knowing that you’ve recovered. When you do exert yourself and you continue to stay well, that’s when you know you’re there.
Colin: Yes. For me, the exercise was always kryptonite.
Dan: Me, too.
Colin: So, I led a fairly good manageable life with no exercise for a while. My symptoms would go up, they’d go down, but it was all manageable. It wasn’t awful. Sometimes, it was awful, but not for too long. So, I thought that was the future, you know.
How the ANS REWIRE program helped Colin to recover from ME/CFS & MCS
Dan: And then, what happened?
Colin: Then, I met you.
Dan: Okay. So, you were doing okay at the time when you came across ANS REWIRE. You weren’t in dire straits.
Colin: Yes, I considered myself 70 to 80 percent functional.
Dan: As long as you didn’t do anything.
Colin: Exactly! As long as I didn’t do anything fun, you know. I could work. I could do my responsibilities.
Dan: As long as you didn’t leave the house and do anything fun, you were good.
Colin: Yes. You know, a real key turning point for me was being able to exercise. You know, I didn’t really enjoy exercise when I was well. But, after being denied it for so long, now I love it.
Dan: Yes, I’m a bit the same way, actually. I did enjoy sports.
Colin: Not me.
Dan: Yes. Well, you never would have seen me running down the road. I distinctly remember doing that once when I had recovered. I started running, you know. I don’t do that now. I’ve got a bit of a back challenge, but it never was like something I wanted to do. And then, suddenly, it was like, just because I can, it was suddenly quite interesting.
Tell me, for people who don’t know what ANS REWIRE is, how would you sum up what that is? I mean, what is ANS REWIRE and how would that help you when you’ve tried all these other things?
Colin: Well, ANS REWIRE is a very comprehensive recovery program.
As far as I know – well, I’ll take responsibility for my experience here – in my searching, 17 years of searching for help, this is the only program that I came across that had a comprehensive explanation and theory of what the disease is and what its mechanisms are and why it would affect every system in the body.
When I came to the ANS REWIRE program, I felt like I was already doing good work in a few different areas that need attention to recover, but there were two pivotal pieces for me – one was the relationship of blood sugar to all of your symptoms and managing your blood sugar; and then, the other piece was the neural reprogramming. Those two pieces dropped in with everything else that I was doing right made for recovery.
Dan: When you heard this explanation of the autonomic dysfunction, I mean, how did you feel? What were your thoughts? Because, I mean, had people said that the illness was in your head. Have people ever said that it was just because you’re depressed that you feel like this? I mean, sometimes, you start talking about neural pathways, they start to think that you’re saying, “It’s in my head,” or something like that.
Colin: Yes. Well, I was definitely very sensitive to that because, in the beginning, I got that a lot – that I was depressed or, you know, this was psychosomatic – but I also believe that your body is not separate from your mind. And so, there is this important component that involves your mind. That’s how I interpret this.
I think that, if you’ve been told this is all in your head, you’re being dismissed. You know, your physical sensations are being dismissed as you don’t know what you’re feeling, you don’t know what your own body is feeling.
Dan: Like it’s not real.
Colin: Yes, like it’s not real. And so, this is absolutely real and painful and debilitating, but I believe there is a mind component to it.
Dan: What would you say was the most effective part of ANS REWIRE for you? I mean, what do you think was the most important part for your recovery.
Colin: The neural reprogramming was by far. You know, when I focused on that, I just started to drop away all these other supports that I had. You know, I was taking lots of supplements when I started the program – to get to sleep and manage adrenal symptoms and stuff. I dropped all kinds of stuff. You know, just allowing that part – the neural reprogramming – to kind of reset everything.
Dan: How long did it take for you to recover? Was this like a linear process? How did that happen?
Colin: Well, it wasn’t quite linear. But, I think, three months from starting the program, I started to see some positive results. After a year, I wasn’t taking anything. I wasn’t taking any support and I felt pretty good. But, you know, having been disappointed in the past, I just wanted to test this thing out and make sure that it could fly, so to speak.
Dan: So, how did you test it? With exercise?
Colin: Exercise was the big thing, yes, but the secret test that I held in my back pocket and just hoped I might be able to do one day was to start public speaking because that, to me, is like super stressful. And so, I thought, “If I can start to do that and not have symptoms flare up, then I’ll know I’m recovered.” I haven’t done public speaking yet, but I’m putting myself in that place and all the attendant stress that you would expect is there.
Dan: You’re getting stressed out and you haven’t even done it yet.
Colin: Yes, right.
Dan: Just organizing it.
Colin: Absolutely, yes. It’s the anticipation that’s worse.
Dan: Than the doing.
How Colin dealt with setbacks/relapses of ME/CFS/MCS during his recovery
So, what happened then? When you were exercising, did you start to have little setbacks? Did you have setbacks during your recovery?
Colin: Yes, I did, and that’s where the coaching really came in handy. You know, it made a big difference.
Dan: Did you start to think, “Hey, maybe this stuff isn’t working?” because you’d been there before, hadn’t you?
Dan: You’re feeling better and then, you go and do something, or you get stressed, or you get exercise, and then you get a flare-up, and you feel worse. At this point, are you going, “Here I am again, same old stuff, isn’t it?”
Colin: Yes. Well, I think people with chronic fatigue can probably relate to this. You know, when you have a flare-up, there’s a whole attendant mood and outlook. You know, suddenly, the whole future changes from possible to impossible.
Colin: I’ll say this for normal people so they can get it. When you feel like you’re coming down with the flu, you don’t have much ambition. You’re not looking forward to the challenges of life. You’re dreading them because you feel awful. So, with flare-ups, immediately the future changes, you know, and becomes impossible. Many, many, many more things become impossible. And so, it was a little scary to push this – the exercising – and then have some symptoms and think, “Oh, shit! You know, this is going to be bad!”
Dan: The wheels are falling off the wagon. That’s what’s going on.
How Colin gathered evidence of his recovery from ME/CFS/MCS
Dan: But you persisted, you know. How did that work? I mean, how could you go from that normal thing of “I started to exercise and do, and I get sick” to “now I can exercise, and I don’t get sick”? How did this happen?
Colin: Yes, it’s an invisible subtle shift. So, rather than engaging with that old worldview, you bring about a new worldview – a new possibility.
Dan: A new expectation. Did you start to see some of those shifts happening where you maybe bounced back from the flare-up quicker or the flare-up wasn’t as severe? Or maybe you did more – like, you started doing a little bit of physical exercise and you didn’t get a flare-up. Did those sorts of things start creeping into your experience?
Colin: Yes, and really little miracles. Like, I rode my bike for ten miles. “Now, that should have a really bad result, and I feel like I’m going to have a really bad result. I feel pretty bad right now.” And then, turning that around, rather than that lasting for a week or two or a month, that lasting for the morning, you know, and then gone by afternoon.
Dan: How did that make you feel? What are you thinking?
Colin: Magic. I’m not being flippant. Really, it’s like magic to go from being really fatigued, malaise, brain fog to vitality. You know, I’ve always had it equated with time. You’d need a lot of time to recover. Like colds and flu, those do take time. You don’t get those in the morning and recover in the afternoon.
Colin: But this was different.
Dan: Yes. I mean, it’s difficult to lose 15, 16, 17 years of history and experience, and then to say, “Well, I have a different experience now.”
After three months, you’ve started to feel some shifts. How long was it till you were able to exercise and be okay? How long did that take to happen? Was it a year? Was it nine months?
Colin: Well, I picked up the exercise after six months, I think. After a year, I was full out – well, full out for me. It’s different for everybody, but I was never a real exerciser, but I’d ride my bike ten miles a day, several days a week. And then, on Saturdays, I’d do a 15-mile ride. That’s not a lot of riding for a bike rider but, for me, that’s a lot of riding.
Colin: That’s a lot of distance.
Dan: And you’re working full-time?
Colin: Yes, working full-time.
Dan: What about weekends? Going out? Holidays? Are you doing any of these things?
Colin: Oh, yes.
One big milestone for me was to go to Hawaii. Hawaii is a long flight from Chicago. In the past, I wouldn’t have been able to handle that long a flight. And so, going to Hawaii was a great milestone and celebration. That was no problem at all. I had a great trip, and the flight wasn’t enjoyable, but it wouldn’t have been enjoyable for anybody. It’s boring, but it was not a trigger for anything.
Dan: That must have been weird being on holiday and actually enjoying.
Dan: What did your wife say to all this? I guess she must have had a different husband.
Colin: Yes. You know, the changes are subtle over time. And so, it’s not like a “eureka” moment.
Colin: But I think she’s really happy to have me fully available and engaged.
You know, last year, I did a lot of work for her in her business. She was buying her partner out of her business. I did a lot of the accounting and legal management of that process. That was something that was great to be able to do for her. I wouldn’t have been able to do that in the past. I would have had the energy or the brain capacity to do that. And so, that felt great to me that I could contribute to her in that way.
Dan: It’s an amazing feeling, isn’t it?
Looking back, how long did it take you to recover then? It sounds like, in 12 months, you were doing everything.
Colin: Yes, I think that’s probably accurate – like, 12 months, I was doing everything. You know, still having little flare-ups, so I wouldn’t say I was fully recovered at 12 months.
Dan: Those little flare-ups would be just some mild symptoms or some severe symptoms? How long would they last?
Colin: Yes, they were mild now. I couldn’t call any of that severe.
Dan: Mild symptoms. How long would they last?
Colin: I don’t know. Gosh. It’s funny. I don’t have a taste for that.
Dan: It’s okay. You were saying you were bouncing back sort of after a day – like, when you were exercising and things.
Dan: Maybe they were just shorter.
Colin: Yes, they were definitely shorter.
Dan: But you can’t remember exactly. Okay. That’s fine.
Colin: But see, here’s the thing that happens. It takes a while because, when you have that little flare-up, that whole outlook comes with it that it takes a while for you to realize that this isn’t two weeks. This isn’t a month. This could be an hour or an afternoon. It takes a while for that to reprogram, so to speak, you know?
Dan: Well, it’s interesting, isn’t it? Because, when we’re sick so long, our ability to accurately and objectively evaluate our experience becomes diminished too, doesn’t it?
Dan: Because you have such an emotional hang-up on these experiences, you get these symptoms, it’s not like a person who hasn’t been chronically ill for two decades, I mean, a normal person who hasn’t had that experience, they get ill and they just go, “Oh, that’s not good!” and whatever. But, when you’ve been sick for two decades, it’s like there’s all this emotional baggage with it, and we lose a bit of our objectivity, don’t we?
Colin: Yes. If every time you open the door, somebody slaps you in the face for 17 years, it takes a while to open the door without wincing, you know?
Dan: Absolutely. In fact, I’ve heard this maybe before, but I’ve told this story often that one of the key things I did is rebalanced my minerals early on in my recovery. When I used to stand up – I was in my early 30’s – in the mornings, I couldn’t stand up. It was like – like you said – a 75-year-old man, but not like some 75-year-old man; more like a 95-year-old man because I’d stand up and I couldn’t even straighten up. It’d take me an hour or two to warm up or something just so I could stand up straight. You know, I was so stiff and sore.
Dan: When I rebalanced my minerals and that went away, the physical went away, but I was still doing it.
Dan: I’d wake up in the morning, and I would be like this, and I would be walking out towards the kitchen to get a glass of water – you know, slowly – and then I’d go, “Hang on, that’s not there.” You know, you think you do that once and you’d be out of it, but because you had this for so many years, it’s like I was doing it every day. I’m like, “Why do I keep walking around like I’m an old cripple when I can stand up straight?”
Dan: I don’t know how long it was. Maybe it was only a week or two, but to repeatedly go through that experience of walking around like you can’t stand up straight when actually you can, it was just like, “What am I doing?”
Colin: That’s fine.
Dan: That’s the impact, I think, having chronic illness for so long can really have on you.
Colin: Yes, it’s a practice. You know, it’s like you’re practicing.
Dan: Big expectations.
Colin: For a long time, you know.
You know, there’s every reason to be reacting that way. You know, you have evidence reinforced over time.
I mean, I was having that problem for years, you know. And so, the way I dealt with that problem was just engrained in me even when the problem was gone. It didn’t take long. It didn’t take years to get rid of it. I’m sure it only took maybe a week, maybe it was two. I really don’t remember. It just seemed a long time because, you know, once you catch yourself doing it once, you think you’re over it, but it took a little time.
Let me ask you then, how long did it actually take for you to be fully recovered so that you weren’t getting those little flare-ups, you weren’t getting the fatigue coming back, and the gut problems, and when you exercised, and all that sort of thing? I mean, in 12 months, you were in pretty good shape by the sound of it.
Dan: Do you think you reached full recovery maybe around 18 months? Is that maybe an appropriate timeframe? Or do you think it was longer?
Colin: Let’s see. That would be probably a little less than that – probably more like 15 months.
You know, in the summer, I was great. I’d ride by bike all the time.
Dan: But it still took you a little while to claim it, and that’s fine, but I guess you’ve had another almost a year or another nine months since then now where you have ben recovered. I mean, what’s life like now as a recovered person? I mean, you were off to Hawaii, you’re riding the bike – it must be a bit weird, no?
Life after recovery from Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) - Colin’s Views On his Post Recovery Phase
Colin: Yes. Well, it creates a new problem, to be honest with you.It’s like, “What do you do with a life that’s been restrained for so long?” You know, I’m really fortunate that I’m self-employed.
One of the things that was a gift of chronic fatigue was that it forced me to manage my life in a way that took care of me and that I could use my time when I was able. And so, I still have that which is really nice. But now, I’m looking to the future really in a way that I couldn’t for 17 years. You know, I have energy that I didn’t have before that wasn’t possible for me to even think about having.
Now, I’m dreaming about what to do with the next phase of my life. I enjoy being in my body. I enjoy sleeping. You know, I think anybody with chronic fatigue can relate to – well, maybe not – I had certainly forgotten what sleep felt like – real sleep. You know, real sleep is just such a beautiful gift and refreshing sleep.
You know, I wake up in the morning and I’m happy. I’m just happy I’m in that bed and I get restful sleep.
Dan: It’s a happy place to go to.
Colin: Yes, you take that that for granted. You know, for that to come back, I had forgotten a lot of things. I had forgotten what it was like to be vital. I had forgotten what it felt like to really have energy. You know, for me to work all day and then be able to go to a public speaking event at night, that’s a great gift, and that was not possible for me. Or I should say I could have done that, but it would have been a real horror. It would have been suffering – a great suffering to push through, and then there would be consequences for it. You know, rediscovering vitality is really amazing.
Dan: Did you do anything else as part of your recovery outside of the ANS REWIRE program?
Colin: No, I did all the things that I did that led up to the ANS recovery program, but once I was in the ANS program, if anything, I did less because I started to drop away.
Dan: The supplements and things?
Colin: All the supplements, yes. I mean, I’m saving thousands of dollars a year on supplements.
Dan: Yes, it’s a crazy cost.
Let me ask you the other thing, since you’ve recovered – I should be leading up now to the closing part – I asked you earlier, I said, “What do you think was the most important part of your recovery?” and you said it was the brain training, but are there any special moments since you’ve recovered? Obviously, there was the holiday you were mentioning when you were going to Hawaii, but any of these sort of moments – literally a moment in time – where you just went, “Wow! I can’t believe I’m doing this!” since you’ve recovered?
Colin: Well, my first 15-mile bike ride through the woods was really special. It just felt so joyful. It was fantastic.
Dan: Were you alone or were you with someone else?
Colin: I was on my own. Just knowing that I was going to come back and there were going to be no consequences for this, it was really special.
Dan: Yes, I know. I totally relate to that.
Colin: I’ll say the most impactful and miraculous things, they’re invisible. You know, I didn’t climb Mount Everest, but every day I wake up, I feel vital, and that is way more fun. I mean, it’s just so much fun to be alive and not be suffering.
Dan: That’s right. I totally get you.
For people who are in the ANS REWIRE program, what do you think is key? What do you think they have to do or get right in order to make their breakthrough?
Colin: Well, I think that’s probably different for each individual, but I think just the commitment to sticking it out and getting there. I know, for me, I had a lot of setbacks over the years – a lot of disappointments – and I think it’s really important to leave those in the past and have hope that this time is your time. It was for me.
From the explanation that you’ve given, you know, it makes perfect sense that people should recover. And so, what it is for each individual person, I don’t know. That’s probably something that they need to discover, but it’s here to be discovered. You know, you’ve got some great tools and some great support. It’d be really worthwhile to pursue it to the end,
Dan: My final question to you in this epic interview. You know, there’s so many people, they’re lost and they’re struggling. They’re having challenges with this illness. What is your best piece of advice that you’d like to give to someone listening to this interview today?
Colin’s advice to people struggling to recover from ME/CFS & MCS
Colin: My best piece of advice is don’t give up hope and don’t settle for suffering.
I went to see a chiropractor very early on and I was thoroughly discouraged. I told him so, and he said to me, “I have every reason to hope that you can recover from this,” and that made a huge difference for me just to hear somebody say that because all I had read about was that it was hopeless. Now, that wasn’t the guy that eventually had me recover, but he gave me a lot of hope.
Dan: Hope is an important thing. Without hope, we’d do nothing.
Well, look, I guess the last thing I want to say to you is congratulations on your recovery!
Colin: Thank you very much, Dan!
Dan: Well done!
We always talk about having the right tools, and the right options, and the right information, and knowing how to do it, but the number one thing about recovering is something that you did and that is you took action. I want to congratulate you for stepping up in life and saying, “Damn! I’m going to do it!” Well done and thank you so much for sharing your insights in this interview!
Colin: Thanks, Dan!
Colin: If I have a minute, I just want to express once again my gratitude to you.
Colin: The program is brilliant. It’s so well-designed and so much care went into it. You know, for 17 years, it’s what I’ve been waiting for. And so, I just can’t express my gratitude to you enough. The fact that you have walked through this fire gives credence to everything that you share with people. Thank you.
Dan: You’re welcome, Colin. Thank you very much for saying it.
You know, seeing people here, that’s my whole motivation. I love doing these interviews and seeing people succeed because that’s what keeps me going and that’s the whole reason for doing it.
Fantastic. Thank you very much.
If you forgot anything or you’ve got any other questions, I’m always available.
Dan: Cheers! Thank you very much!
Colin: Take care!