CFS Recovery: Ted shares how he recovered from CFS

CFS Recovery: Ted finally experiences a solid recovery from CFS after 7-8 years of failed treatments & mind/body approaches

For Recovery Story Disclaimer, please see the main page here!

Last Updated on by

picture of Ted with ME/CFS & PVFS recovery details

Ted sought CFS recovery for over 7 years, trying lots of physical treatments and a mind/body approach for recovery.

However, he was never able to maintain any CFS recovery and his last relapse with Post-viral Fatigue Syndrome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome end up was so bad that he finally thought: “I am not going to recover from CFS”.

So he sends an email asking for an opinion and the response reduces him and his wife to tears as it reignited a spark of hope.  Ted went on to enrol in the ANS REWIRE recovery program and made a full recovery after 7-8 years of ME/CFS/PVFS.

He shares how he had tried mindfulness, pacing, mind/body approaches and functional medicine without any real success and why he decided to try yet another program for CFS recovery, even though the contents seemed similar to what had not worked for him in the past.

His ME/CFS recovery journey didn’t just give him his life back, but profoundly changed his experience of life “I didn’t just come out of it recovered, but a better person…I never ever let a day go by where I’m not grateful for my health …it’s an ability to really enjoy my life fully again”

Here is his recovery interview where he shares his message of hope.

Transcript:

Dan:   Today’s recovery story is with Ted from the UK who recovered after experiencing ME/CFS and post-viral fatigue syndrome (PVFS) for about seven years. When we first get ill I think we all expect to get well again. When days turn into weeks, weeks turn into months we maintain hope. But for how long?
Ted shares his experience of how ME/CFS progressed and how when after about seven years he finally thought he had recovered he relapsed had a massive crash that left him feeling for the first time, he would never recover.
Ted had read CFS Unravelled and had tried mind-body programs and graded exercise therapy with no success. But then he enrolled in ans rewire and had a completely different experience that really surprised him.
He shares his story in this wonderful interview that is both uplifting and inspiring. It’s full of wisdom for recovering from a ME/CFS this wonderfully kind gentleman shares how he made two big changes to his lifestyle. Things that had been a core part of his life for nearly three decades. What dedication to recovery. I think his story really shows the power of commitment to do the things that have to be done to get well. I hope you enjoy the interview as much as I did.

Dan:   Today I’m speaking with Ted from the UK. Hi Ted, thanks for coming to share your story.

Ted:   Hi Dan. It’s a pleasure, thank you.

Dan:   So you like many people are one of the people who saw these recovery interviews some time ago and now you’re doing one. Must feel a bit strange!?

Ted:   It feels very strange, I have to say, very strange, yes.

Dan:   When you first saw them did you think you might be doing one of them one day?

Ted:   No, not because I wasn’t hoping to get better but I just never thought I’d be doing one of these.

Dan:   Fair enough. Ted let’s start off with –  how long ago did you first get sick I mean how old were you? Do you remember?

Ted:   Yeah I do. The first symptoms were two weeks after my 50th birthday. Very very specific.

Dan:   Right, right – okay.

Ted:   I was going to say the thing is with hindsight when I look back though I can, I can see signs going back years previously which kind of pointed to me heading in this sort of direction. But when I was very very very ill, that was when I was first diagnosed.

Dan:   How long ago was it when you first got ill? How many years ago was it?

Ted:   That was actually eight years ago.

Dan:   What were your first symptoms?

Ted:   It actually happened in a dance class, amazingly. I was doing this dance class and then suddenly, I found that my head was getting very cloudy. I didn’t know where I was. I was very disoriented, very dizzy, and suddenly found that I couldn’t move. My body just wouldn’t respond.

Dan:   Wow. Must have been pretty scary.

Ted:   It was very scary.

Dan:   What did your wife say at the time? I mean, it must have been very confusing.

Ted:   She was a little bit shocked. I think she just thought, “Oh, he’s not feeling very well. Maybe he’s got a flu coming on.” or something like that, because I didn’t make a big fuss about it in the middle of the lesson. I just said that I wasn’t feeling very well and I thought I ought to leave the lesson.
I don’t think she realized quite how I was feeling at that point. She was very shocked when she found me afterwards in the car and I was just not able to do anything.

Dan:   Wow. Then what happened after that? I guess you probably thought you’d get better the next day or something like that? How did it fold out?

Ted:   Yeah, I did. I thought I would get better. I kept going, basically, which is what I’ve always done all my life. I went to work the next day and really struggled. I got through the day but I think I don’t remember much about after finishing. I think I probably just went home and slept. It went on like that for fortnights, being exhausted and struggling. Obviously, I was moving at that point. But it was as if I’d had a really bad virus and really bad flu or cold, and have those after feelings of just weakness and not being able to do anything.

Dan:   And then I assume you would have gone to the doctor at the time at some stage or did you just think it’s the flu, they can’t do anything?

Ted:   You would assume, yeah, but I didn’t. [laughter] I didn’t go to the doctor straight away because I thought I’ll get over this. I think part of it was as I said earlier on that with hindsight, when I look back, there have been episodes before of things happening like this where I would feel, for a number of weeks, very weak and very tired. I think I just thought maybe that was what was happening to me again. What did happen was that after a fortnight, I didn’t feel better. So, I took a whole week off work, thinking, “Well, I just need to stop. I need to rest.” which is what I did. Yeah.

Dan:   Okay. And then what?

Ted:   Well, I was very sensible for a week and I didn’t do anything. Then I went back to work and I was sat at my dental chair, starting to tip the chair back to treat my first patient. And as I tried to lift my hand up to actually start working on him, I couldn’t move. I just physically couldn’t move. I had to turn to my nurse and say, “Please, can you get Mrs. Jones out of the chair and get my wife?” That was when I went to the doctor.

Dan:   You throw me back to my own experience. I know it could feel a little bit almost mind-boggling. It’s like, you just don’t want to say something like that, do you? It takes a lot to take that step because it sounds a bit dramatic and it doesn’t feel natural. It’s almost embarrassing, isn’t it?

Ted:   Yeah, I think you’re completely right on that. Yeah, very much so.

Dan:   Yeah. So, then what happens? What happened when you went to the doctor? Did your symptoms change over time? Did you have treatments? Tell us the story.

Ted:   Well, I think I scared the doctor completely because this person was brought in. I mean, at this point, I was super fit. I mean, I was super fit. I did an enormous amount of dancing. I enjoyed walking. As in hiking walking. I was very, very fit and suddenly, this person who was in front of her couldn’t move. She’s just sent me straight away for bacteria tests. I went to the hospital and I had all sorts of tests done straight away that day. And it was following all that, that she made the diagnosis of post viral fatigue syndrome.

Dan:   Right.

Ted:   Yeah. What happened was I was very sensible. I did what she told me to do. I cut down my hours, I ensured that I took proper rest, and gradually, I was getting better. But then, events happened in my life. When I actually saw the doctor, one of the things she said to me was, “Is there any stress going on in your life?” And my reply was, “Oh, no, no. I’m not stressed. I’m not stressed at all.” But in fact, I was under massive stress and she just teased it out of me. One of the things I got going on in my life at that point was that, a couple of weeks previously to this all happening, I had a conversation with my dad’s GP, his doctor, about how ill he was and the fact that he was probably dying. But to me, that was normal. That was just the way life was and I wasn’t stressed. She helped to make me realize that actually that was a high level of stress in my life. And again, it was my father’s declining health. And all we went through with that, that then brought the symptoms back. They didn’t seem to be a way back then. I just got worse and worse, and worse again.

Dan:   It’s funny because obviously, it is a normal part of life. These things are normal and there’s a part of us that can intellectualize them. Well, this is just what happens and stiff upper lip, and all that, as you British say. But sometimes, we don’t recognize that these things have more of an impact on us because on an intellectual level, we rationalize them, but they’re still a negative event. So, what was the original prognosis your doctor gave you with the post viral fatigue syndrome?

Ted:   Oh, the prognosis. If I was sensible and I didn’t try to overdo it, then I should be able to come out of that.

Dan:   Okay. So, did you put a time frame on it at the time?

Ted:   Yeah, she said about six months.

Dan:   About six months. And then, obviously, you were having difficulty working, but were your symptoms changing? Were they getting worse? Were you getting other symptoms? I mean, besides the fatigue, did you have any other symptoms?

Ted:   As well as the fatigue, yeah. The brain fog was to pretty much of a nightmare. I was very temperature sensitive, often called sensitivity, and I’ve always been somebody who prefer to feel cold when I was working, so my surgery used to be known as the fridge because I always had the air conditioning on and no one wanted to work with me. Suddenly, I went the other way. I couldn’t stand being cold and everyone hated working with me because the surgery was too hot. But I was very sensitive to that, very sensitive to noise, incredibly sensitive.

Dan:   What about in your body? Any other bodily symptoms? Like problems with the gut or problems with the immune system, all these kind of things?

Ted:   Yeah. Problems with my gut came later. They have developed more with time. But yes, there was. I had issues like emotional problems as well, irritability, just the slightest thing. That was quite a strong complication as well. And then general aches and pains in legs and that sort of thing.

Dan:   Right. Okay. So, your diagnosis changed or was diagnosed as CFS (Chronic fatigue syndrome) or ME (Myalgic Encephalomyelitis) as it’s called in the UK?

Ted:   Yep.

Dan:   Did they ever diagnose you with fibromyalgia as well or was the pains not so specific.

Ted:   No, I wasn’t diagnosed with fibromyalgia, from my excellent knowledge. I don’t think that I had fibromyalgia.

Dan:   Yes. It was more that the typical pains that you get with CFS.

Ted:   Yeah, definitely.

Dan:   So, as things went on, presumably, you know, I know how it goes, suddenly, these weeks turn into months, and then suddenly, the month turns into a year or two. Obviously, we’re talking about a lot of years. I mean, how did the illness change? Did it just become a steady normal of you trying to scrape through the week doing some part time work? Did you get a lot of different symptoms? Did you seek a lot of treatments? How would you summarize those years?

Ted:   Gosh. Yeah, I, hoping maybe. One of the difficulties was that, I think it was difficult because it was out of my nature, I was self employed and I had a great sense of responsibility because if I wasn’t actually working, then I wasn’t earning money for my staff to be paid their wages. This put me in a lot of pressure in the sense of, again, it’s the kind of person I am, I thought this great responsibility that I should be trying to work whenever I could, and that’s what I did. Okay, I could only work part time, and I can only see a few patients in a day, but I was working. But the net result of that was, that I had no life outside work. I was just stuck in a chair, I had no energy to do anything.

Dan:   Did you try a lot of treatments?

Ted:   Yeah, I tried a number of treatments.I think very early on, I realized that I had to get help because I had a number of patients who had chronic fatigue syndrome, ME, and such, and I’d sort of seen what was available in the UK through the medical profession at that time.  I realized had to think outside the box, that they were ill for so long. A number of my patients had been ill for like 17 years plus. I didn’t feel that I was going to be ill forever at that time. I really felt I was going to get better in some shape or form. So, I went out looking for help. I had regular acupuncture with five elements Chinese traditional acupuncturist, which helped me enormously. It kept me going. It really kept me going.

Dan:   Like it has given you a bit of a boost with your energy and your immune system, is that what you felt?

Ted:   Absolutely. I mean, there were times when I would almost crawl in and I could barely move, then I had treatment and I’d be able to walk out and function again. That helped me a lot. I responded well to it. Very early on, I signed on to the Gupta technique. It’s changed a lot, I think, over the years, but in those early days, it helped me. I had some improvement, but I just couldn’t maintain any type of CFS recovery. I think through my research and all the things I was looking at, I got into mindfulness meditation, I tried pacing, I tried all the things that so many of us have tried over the years.

Dan:   Yeah. Did you engage with any other doctors? Did you have any other sort of medical treatments as well?

Ted:   No, I didn’t.

Dan:   Were you still in contact with your doctor as the years went on?

Ted:   Not really. No, not really.

Dan:   Okay. So, you tried these strategies, they sort of kept you going, nothing really got you over the line. Was there something that happened that was your turning point? I mean, was it ANS REWIRE or was this something that happened beforehand?

Ted:   Yeah. For me, it was definitely ANS REWIRE that made all the difference. I found your book probably about 18 months previously, before I signed on to the program. Basically, through my own research that I was doing, and your book came up on a on a web search, and I bought it straight away. I just thought it was brilliant, I still do. I’ve recommended it to so many people, because I think the work you’ve done is absolutely amazing…

Dan:   Thank you.

Ted:   … how you brought together so much understanding and then being able to put it across so clearly to be understood. That’s a gift in itself. Thank you for that. It all makes sense. And I think because I was doing mindfulness meditation, for instance, already and I could see how that was going to help, I started working with a functional medical practitioner.

Dan:   Good.

Ted:   A little bit more than just a nutritionist but that’s the idea. I was getting some very positive improvement. But I think what was happening with me was that I would get improvement and it would seem to stay with me for a while, might be a couple of months, and then I would relapse and have a massive crash. That was a trend I was seeing over time. It’s improvement and crashing. Improvement and crashing.

Dan:   How did you cope with that emotionally?

Ted:   I just did. I just had to. I was okay about it. I think what finally prompted me was, I think 2016, I had quite a long period of time of what I thought was feeling really well. With hindsight, I know I wasn’t as well as I thought I was, but I felt really well.

Dan:   You lose your perspective after seven years, don’t you?

Ted:   Yeah. I think I thought I’d got this cracked. I really thought I’ve got this cracked.

Dan:   Yes.

Ted:   To be honest, I think as a result because I thought I’d got it cracked and I think this is what was happening at the other occasions when I had relapses, mindfulness meditation would go or I stop doing something else or whatever. Anyway, what happened with me was CFS came back and bit me really hard. I had a massive crash, a massive relapse and for the first time, in all that time, it really affected me in a major way emotionally. I actually – that was the first time I actually thought I’m not gonna recover from this. It’ll be very fortunate. All those years I was convinced I was going to. But at that point, I really thought I wasn’t going to recover.

Dan:   So that sounds like it was your low point, would you say?

Ted:   Yeah. I mean that actually was my lowest point. You would have thought actually being originally stuck in a chair not being able to move, would have been a low point, but no, it wasn’t.

Dan:   Yeah.

Ted:   That was my low point. That was it.

Dan:   Were you like you’re most severely ill at that time? Is that why? I mean, was it that you were like were you’re bed bound or -?

Ted:   No. I wasn’t bed bound. And I don’t think I was as severely as I had been in the past. I mean I was unable to do anything and even the slightest effort, just walking out to the car and a drive for instance would exhaust me. But I wasn’t as bad as I had been. No, I think it just was the sheer enormity of being so ill again, having felt so much better.

Dan:   You know it sounds exactly like my story. That’s kind of funny because that’s exactly how it was for me. My lowest point was when I had this crash which was I think six or seven years in.

Ted:   Right.

Dan:   No, actually bit sooner, sorry, about five or six years in and yeah you know one would hope that all the things would get better. And when they get worse and especially when you go through that rollercoaster of hope and disappointment, I think it wears us down over time.

Ted:   Yeah. I think it does. I mean up until that point, did you yourself always thought you were gonna get better? I mean –

Dan:   No. Look, I have to be honest that I wasn’t that sensible. I think that’s a great one to be. I really always like to have people have hope but I personally had lost hope probably after three or four years because I’ve tried everything and –

Ted:   Right. But three or four years is a long time to maintain it, isn’t it?

Dan:   It is, you know. I mean you just think of what’s going on because for me it was like I’ll just find out what it is and then I will get well. And then when I did find out what it was there was nothing to suggest it was going to go and that will do, you know what I mean? So I suppose until I learned that I had CFS, I thought I had a virus or something and I was thinking, oh l just have to find out what it is or it’ll just go, you know.

Ted:   Yeah.

Dan:   And then when I got diagnosed and when I tried all the treatments and nothing worked, I kind of thought I’ll just live with it. Which seemed an option at the time until things got so bad.

Ted:   Yeah.

Dan:   And then you sort of feel like, well now what do I do?

Ted:   Yeah.

Dan:   It’s like you said that it should become coping, doesn’t it?

Ted:   Yeah, it does. It does. It becomes coping.

Dan:   Yeah. And when that becomes difficult and it pushes us into taking new action and so for you was ANS REWIRE. You obviously had a look at it. It resonated with you.

Ted:   It did.

Dan:   And you enrolled and so now –

Ted:   I’d like to say that actually you helped me a lot as well in the sense of I fired off an email to you in this pretty low state.

Dan:   Yes.

Ted:   And you sent me this amazing email for the hope and encouragement. I mean I think one of the things you said to me in that email was that… because I said do I just need to start again? Have I got it all wrong? You said no, you need to build on this. You’re doing the right things but you need to build on this.

Dan:   Right.

Ted:   And you need to build a robust recovery – excuse me. You need to build a robust recovery and that’s what I wasn’t doing. I would feel a little bit better and then think I was all right.

Dan:   Yes.

Ted:   Because I wasn’t

Dan:   Right.

Ted:   And I think that’s an important part for anyone looking at a program which the program does. It builds you. It makes you right physically and mentally.

Dan:   Yeah. Okay. There you go. You see, that’s a long time ago and I don’t even remember that email. You’re gonna refresh my memory here–

Ted:   Well I’m not surprised. I’m sure you fire so many of them to people.

Dan:   I fire a lot of emails off, yes. So look, I mean people obviously – some people will be from the program listening to this. Some people won’t have a clue so you know obviously for people who don’t know what ANS REWIRE is, I mean we don’t want to, perhaps it’s difficult to go into all the nitty-gritty detail of a big program like this, but I mean, we don’t want to be, you know, secretive. We want to share with people what are the strategies and many people may go off even to do some of these things on their own. I know that you mentioned meditation for instance which is a part of the program. I mean what were the other parts I guess of the program that you use? I mean did you use all the parts of the program or did you just use some of the parts?

Ted:   Yeah, I definitely used the majority of the program. The actual REWIRE technique itself was very important I think. Most of us who’ve had chronic fatigue syndrome and I’ve not had fibromyalgia but I guess it’s the same people with fibromyalgia. We find that we’ve got certain triggers, certain things that can set us off, certain things that can make things worse and part of the program was helping me to identify more clearly those triggers.

Dan:   Yes.

Ted:   I had a pretty good idea what they were but it really helped me to address that and various aspects of my life and looking at various stressors that I had which perhaps I just coped with and took for granted and didn’t realize what stressors but I was able to identify those as well and then deal with that sort of thing. The actual REWIRE technique helps you to cope with these triggers and do something about it. It helps you to make them less powerful and in fact, in the end negate the effect that they have on you. That was a very important part for me.

Dan:   And I mean are these all – would you say these old psychological triggers or would you say that they’re – ?

Ted:   No, no, no, not at all. No, not at all. That’s a really interesting part of it where I think it’s very early on where you help us to realize how quite often our posture and how we hold our body. It really made me smile that particular video when we did it and you actually took us through this exercise to show us how it happened and that was kind of like whoa! A light-bulb moment. I just couldn’t believe it and I worked with that and it was really powerful how quickly in a matter of days it made a difference to me and in my own well-being how it made a difference and that was just the way I was holding my body. So to anyone who doesn’t know what I’m talking about look forward to that, very very interesting and very very helpful, so yeah. You mentioned that I did meditation. Yeah. But the meditation – I was already doing it, yes. But I became more disciplined in doing it. You shouldn’t create a rod for your back but you don’t mean discipline in that sense but I became more aware of the value of the meditation.

Dan:   Yes.

Ted:   Benefits of it to me. Sleep was a big thing for me. Sleep was one of the symptoms which I don’t think I mentioned earlier on up until I was on a program. I can’t remember really sleeping well. I was a very light sleeper. I always used to wake several times during the night and sleep was something that I addressed by the program and I used the meditations that you’ve created just before going to bed and they were really really helpful, yeah.

Dan:   So what about the physical strategies? I mean you mentioned that you also worked with integrated or function medicine doctor.

Ted:   Yeah.

Dan:   What kind of things did you do there? What kind of treatments did you do with your doctor?

Ted:   Yeah. That was very diet based. I had a lot of tests done which showed a very strong sensitivity to gluten and also to dairy products.

Dan:   Yes.

Ted:   So I made significant changes in my diet and I had also – I have to admit been a vegetarian for 27 year.

Dan:   Yes.

Ted:   My wife had been a vegetarian for longer than that and it was actually her who said to me, you think you really ought to be talking to people about whether you’re not eating meat is a complication.  Which for someone who was a vegetarian for emotional reasons wasn’t an easy thing for either us to contemplate. But I did stop being a vegetarian, yeah. That’s another part of my dietary changes.

Dan:   Do you think – I mean you know, and this is a tricky thing because there are very sound and valid reasons why you want to be a vegetarian. You know this is your choice. I think that’s to be respected and I suppose perhaps even when you read CFS Unraveled, you recognized the complications that can arise from when we have CFS with missing out a certain or having a low level of certain nutrients. And I think I want to make that point too is perhaps different for someone who doesn’t have CFS.

Ted:   Yeah.

Dan:   I’m not saying at all that people can’t be healthy being vegetarian. However, I think it’s quite a tricky thing to have a very healthy vegetarian diet. I think a lot of vegetarians actually eat a very nutritionally poor diet where some vegetarians you know fantastically healthy diet. You know there’s a big variation just like when you’re not vegetarian.

Ted:   There’s a massive variation. There’s a massive variation. I think the last thing I’d ever want to do is to upset vegetarians in any shape or form.  You put that across really clearly.

Dan:   But it’s hard, isn’t it?

Ted:   It is. It’s very hard. One of the things that helped me – yes, like you said when I read the book and I saw what you were saying that, I was a vegetarian at that point.

Dan:   Yes.

Ted:   It was very hard you know. You’re looking at this and thinking “I’m really uncomfortable about this”.

Dan:   Yeah.

Ted:   I think I think that one of the things actually helped me was the Dalai Lama. Dalai Lama who has written about his own health and how he had to deal with this problem that he actually had to start eating meat on the recommendation of the medics. And I kind of thought, gosh, if he’s had to deal with this. And it helped me in some shape or form. I can’t explain this why it did even help me. But it was a hard thing to realize and I think it’s really important to say that. It is different for people with chronic fatigue syndrome. You have to accept that it is different for people with chronic fatigue syndrome.

Dan:   Yeah. Because obviously when we have chronic fatigue syndrome the body becomes very depleted.

Ted:   Yeah.

Dan:   And it becomes depleted and there’s a whole bunch of biochemical processes that they almost need the kick start and in order for that some of the kick start to happen and for us to start metabolizing fats more readily, we really need those fats. Now, vegetarian diet can have less fats but sometimes it’s missing some of those other ingredients in order to metabolize the fats.

Ted:   Yes.

Dan:   So these are some of the challenges. Okay, so while tough transition, big decision, what was the key? What was the key to success to making it happen? I mean did you just start with small things? Did you start with eating certain foods? Have you got anything to share?

Ted:   Yeah, I did. I think I started first of all – and sorry vegetarians – I started again with fish.

Dan:   Yes.

Ted:   And then I moved into –

Dan:   Yep.

Ted:   Physically, it was really hard to chew meat. I hadn’t chewed it for 27 years and it was very hard. But I think for me the fact was I was so ill, and got me over that hump. It got me over that hump, what I was doing.

Dan:   It helped you a lot.

Ted:   It helped me, yeah.

Dan:   Actually you wouldn’t have felt some sort of magic difference straight away when you changed your diet or anything?

Ted:   No, I didn’t. No, that’s not what I recommend. No.

Dan:   Okay so you changed your diet, you removed gluten. Obviously, I can imagine it’s a big deal. Did you also reduce carbohydrates on the whole? Did you find that?

Ted:   I didn’t actually reduce carbohydrates significantly until – well other than not obviously not eating pasta and all that sort of thing because I used to have a lot of pasta in my diets as a vegetarian.

Dan:   Yes.

Ted:   I think I significantly reduced carbohydrates when I was on the program.

Dan:   On the ANS REWIRE program.

Ted:   I became much better at looking at my plate and thinking, “Yeah, okay. I shouldn’t have more than that on my plate of carbohydrate and I should have that amount of protein and that amount of good vegetables.” But I think that’s when I really significantly reduced it.

Dan:   So in the ANS REWIRE Program, I mean, how long was it until you started to feel changes and did you then change your activities as you went along with that?

Ted:   Yeah. I started to feel changes very quickly. As I recall, probably in the first two weeks, I went from being unable to do anything, to starting to function again, some shape or form and I read my diary recently to see how I got in that first month and then it was really fascinating to see both physically and mentally how I was changing over that period. There was an incredible sense of hope which I went into it with hope, yes. But it was that hope and realization that you know what, this is really working. That continued very early on. I think that’s important to realize at that goal that you realize full CFS recovery is possible.

Dan:   I mean, it’s one thing to have hope. But hope and faith are quite different, aren’t they? And when we actually experience a change, it builds a whole different level of confidence, doesn’t it?

Ted:   Yeah, definitely. Confidence is probably a better word. Yeah. Yeah. Yeah. So yes, by the end of that first month of doing the program, I actually rated myself at 8/10 as to my capabilities, which I was just staggered by, really. I was functioning much better. Physically, I wasn’t feeling so tired if I did things and I then gradually built up doing more and more physically. I started walking, increasing the amount I walked gradually.

Dan:   Were you scared of doing this at all? Given the fact that obviously in the past, whenever you increase …

Ted:   I had a massive relapse.

Dan:   You get really sick again.

Ted:   No. I don’t think I was. That word you used, there was that confidence. No, I wasn’t. I was really taken on board because I could see when I look back at all those times of improvement and how I had improved in that time, I could understand that the problem was that I didn’t allow myself to recover fully. I never built that robust CFS recovery, which I needed. One of the things you talk about later in the program is the importance physically of reconditioning our body after so much time of having Chronic Fatigue Syndrome. I think that’s really, really important. I know you don’t want me to go too much into the technical side of things. But as you say, after all that time, our muscles felt weak. We’re not able to do …

Dan:   Absolutely.

Ted:   And so that gradual building of physical reconditioning, I’m not going to say, fitness. I’m going to say, reconditioning. That was so important into then maintaining that recovery.

Dan:   Yeah.

Ted:   And the other thing I think that I had to address which the program does so well was, a lot of those, I’m going to use the word psychological. I don’t know because this is not a psychological problem. But let’s just say those little voices in your head that maybe make you a pessimist or cynical or an overachiever or a worrier, those sort of things that most of us have got a combination of within us which no one sees and the powerful effect those can have on you and addressing those through the program was really, really important as well.

Dan:   Yeah. Well, that’s the thing. When we’re so sick for so long, it’s like, I mean, I don’t know, none of us live perfectly and sometimes, many of our strengths can become weaknesses too in life. But when we’re well, it doesn’t really matter and we can take it in your stride. But when we’re sick, we become so vulnerable that somebody making a bunch of noise can impact us, our well-being. Someone opening a bottle of perfume from 30 meters away can suddenly affect us. And so, we have to tap into these other things.

Ted:   I had to make a number of … I did. I made a number of, as well as that, I made a number of lifestyle changes which were pretty massive, actually.

Dan:   Like what kind of changes?

Ted:   Well, sleep. Sleep was a major issue. I’d always been up with the lark when I was younger. Someone who was good in the mornings. I used to wait for the dawn. I used to sleep with the curtains open because I used to like to watch the dawn rise and my wife was the complete opposite. She’s a night owl.  And so, going to bed, she would go to bed very late. We used to eat late, go to bed late, we go to bed late. She couldn’t go to sleep until she’s read for quite a long time. By which time, I was overtired and I would never get to sleep. And this didn’t happen. So that just didn’t help. So quite often, I would be going past midnight still not going to sleep.  So that was addressing the sleep issues that I had in my life. I had to make a pretty major choice. I talked to Kate about it as well. I chose to sleep in a different bedroom.

Dan:   Sure.

Ted:   That’s a pretty, after you’ve been married for 34 years, it’s a pretty dramatic decision to make.

Dan:   Absolutely.

Ted:   But for my own health and welfare, I realized that I was living by Kate’s rhythms. Not by my own rhythms.

Dan:   Absolutely.

Ted:   And I now continue. I go to bed far, far earlier than Kate, because that’s what I want to do. I don’t stay up just deliberately because Kate goes to bed late at night. So that was a pretty, I mean, that was a pretty radical decision to make. But the benefits of it were enormous. Absolutely massive.

Dan:   So were there any other sort of lifestyle changes that you made that you think were very significant?

Ted:   Yeah. I think one of the biggest lifestyle choices I made was a better understanding of balance in life. Again, those are on the program might already done the wheel, the wheel of … remind me the name.

Dan:   I think wheel of balance. I think, what’s the name of it? I hope that was it.

Ted:   The wheel of balance. Yeah, the wheel of balance. That was a very helpful exercise for me. And I could see massive imbalance, which I knew was there. But it really clarified it, made it clear to me. And I think I made a massive change, that understanding and therefore, the balance in my life. Yeah. I just came back from a lovely weekend away dancing where I did workshops with the whole weekend, danced in the night and a brilliant time. It was fantastic. But then I look at the balance of that and I realized that, “Yeah. It’s quite natural. I’m going to feel tired for a couple of days. That’s okay.” But I balance what I do in those couple of days. I’m just completely … I don’t mean like pacing in any shape or form of that. But it’s getting that balance in your life. Can’t be on the go all the time. You got to have rest and you know what, it’s okay to sit down, quietly read a book and relax. You’re not being lazy. That’s life and you should do that.

Dan:   Absolutely. It’s so funny because you look at an animal, this is what happens.

Ted:   Yeah, exactly.

Dan:   It’s like, if I go and take my dog to the beach and she’s running around and jumping around the ocean and what have you and guess what happens when we get home for the rest of the afternoon and evening? Lying in the basket.

Ted:   Yeah, exactly.

Dan:   But we’d be doing paperwork. It makes no sense.

Ted:   I know. It’s crazy.

Dan:   But you said there was a particular challenge that you had really with the CFS recovery process. Was there anything you found kind of difficult during your recovery? How long did your recovery take all in all?

Ted:   Well, my CFS recovery from starting on the program took four and a half months, which I was pretty blown away by. I have to say. Was there anything in particular? No. No. I very much felt that the program takes you forward in a way that you build on the success in every stage. Every stage you do, you build on that and plan the next action plan every day, or every video, I should say, because you don’t necessarily watch a video every day, if that’s not where you are. But there’s an action to complete and it can be, the very first day, it can be a very simple action. If someone’s looking at this that doesn’t know a lot about the program, don’t think that you’re going to be set a massive task which is difficult. You’re not. You’re set something which at that particular point, you’re capable of doing and it just builds and builds and builds and gives you that confidence in moving forward. So as the program has developed and it becomes slightly more complex in that you’re addressing let’s say, character traits for instance. You’ve already got that ability. You’ve grown. You’ve developed rather like an athlete developing their fitness for a competition. You take, you, Dan, take us and slowly build us up to a point where we’re ready for that next stage. So, no. I didn’t find things too challenging or over-challenging. Things were just right for me.

Dan:   Did you have any setbacks? I mean, did you ever feel like we’re going backwards?

Ted:   No, I didn’t.

Dan:   That would have been a pleasant change.

Ted:   It was great. Yeah, it was nice not to experience that. No, I didn’t at any point had like a relapse at all. No.

Dan:   Okay. So obviously, that really helped, I guess, with your confidence and probably …

Ted:   Yeah. That again helped with my confidence. Yes.

Dan:   Yeah. So my question is, what’s the one thing that you think was the most important thing in your CFS recovery?

Ted:   I think acceptance was an important thing. An acceptance but a peaceful acceptance of having Chronic Fatigue Syndrome. It wasn’t that over all those years of having it, I didn’t recognize it. But there was something about accepting, “Okay, I’m ill. I am ill. It is how it is. But it doesn’t mean, this is how it’s got to be.” And then it was just a whole combination of the whole package of the ANS REWIRE program. And all the different things coming together, but, that works so well with me.

Dan:   Why do you think the acceptance was so important? Did it change how you…

Ted:   There was, I think there was a change in the, it was almost like a change, it gave me a sense of peace. mostly peace in myself.

Dan:   yeah.

Ted:   I’d always been somebody who, if I was ill, I’d I fought against it, fought against illness. I didn’t give in to it. If I felt slightly rundown, I’m thinking back now like twenty thirty years, if I felt rundown, oh I didn’t give in to that, I go to work, and I work hard. I put in a full day.

Dan:   Soldier on.

Ted:   That’s the words, soldier on! That’s the one, soldier on! So, yeah. that’s what I’m saying, there was that sort of acceptance, Ok I’m ill, all right. Let’s move forward from that point, let’s do something about it. It was a, I lost that driving of my body. Yeah, we’ve used the word already. I think I started to be kind, I started to nurture myself. That’s what that acceptance led to.

Dan:   Because even if you’re only doing ten percent of what you would to be doing if you have a healthy, that ten percent can still be, absolutely flogging yourself.

Ted:   Oh definitely. Yeah. I mean, yeah. I know that now, and how I would be, quite frank I think I was insane.

Dan:   Yeah.

Ted:   Not quite? You know what I mean?

Dan:   Yeah, I know exactly what you mean!

Ted:   Compared to, I mean, I described, I described this as being life transforming, and it is. I’m transformed, I’m a different person. I’m a better person. Yeah, I just look back at that person, I sort of think, “how did I do that, all those years?”.

Dan:   Yeah. I think so many of us do that when we recover. I wrote a blog about that some years ago and I got a lot of emails from it, I have to tell you, because yeah, when we look at it, we have such a perspective that’s so different afterwards when we look back at it and then you just go, “Wow! How did you do it?” And even whilst we’re ill, I just don’t think people realize just how amazing it is that they do what they do. But I mean, just going back on that, like I said, if you can only do 10% of what you could be doing if you’re healthy, I mean, you shouldn’t be doing 10%, should you? I mean, if you accept that you’re ill and you can only do 10%, then maybe you should be doing 5%.

Ted:   Definitely.

Dan:   Yeah?

Ted:   Exactly. Yeah.

Dan:   And I think that is the shift that we get through this acceptance because you go, “Okay. Well, that’s it.” So you don’t just go, “No, only 10% or only 20% or 30%.” We should be doing less than what we can and I think this acceptance really ties closely with that nurturing. I think they go hand in hand. Look, as we finish up, I guess for people who don’t know anything about the ANS REWIRE program and who are probably trying a whole bunch of different strategies, some are helpful, I mean, what’s your biggest advice to people who are still sick?

Ted:   I think my biggest advice to people who are still sick is, don’t give up. There really is hope. I’m sat here today as an example of someone who has gone through this process, who’s used the ANS REWIRE program and who has made a full CFS recovery. Yeah. You’ll find doctors who will tell you that you can’t recover, but I’m sorry, you can. And I don’t know why I’m apologizing for. It’s wonderful. You really can recover.

Dan:   Yes.

Ted:   Recover. You can live a full life again. You can do the things you want to do and I would urge anyone who’s in that situation to look closely at your program Dan. I think you put a fantastic program together. I really do. And for me, it was life-changing. It was transforming. [Inaudible] positive experience. I didn’t just come out of it recovering from CFS. I came out of it, a better person. I came out of it, a more balanced person. I’ve come out of it, a person who’s got a whole new perspective on life.And I think quite frankly, I’ll never ever let a day go by where I’m not grateful for my health. It’s this ability to really enjoy my life fully again, which is fantastic.  So, thank you. A big thank you for that.

Dan:   You’re welcome.

Ted:   And yeah. To anyone else, I would say, yeah. Look at the ANS REWIRE program. You put your free videos out, don’t you, for people to look at?

Dan:   Absolutely.

Ted:   And give them info. And I would say, check it out and I wouldn’t just say, check it out. I’d say, go for it.

Dan:   Okay. Thank you, Ted. And I guess the other question is, you mentioned about living a full life again. I mean, what’s life like now for you? I mean, what’s up? Has there been any particular things that you’ve done since you’ve recovered which I guess is probably, what, a year ago now, almost. Is it? Or six months ago?

Ted:   Yeah. I mean, it will be a year very soon.

Dan:   Yeah. So I mean, is there anything in particular you’ve done where you go, “Oh my God, I can’t believe I’m doing this again. I never thought I would.”? Or did you have any sort of aha moments? I mean, how do you know you’re fully well now? I mean, what are you doing these days?

Ted:   Yeah. How do I know I’m fully well? Well, I’ve been able to do a lot of the things that I used to do. Again, I keep talking about dancing. But my dance instructress got really excited, obviously, as I got better because she said, she thought she’d lost me as a dancer in the sense of my, that she would never dance with me at my ability as I had been before I was Ill.

Dan:   Yes.

Ted:   She just said, “Wow! You’re back! You’re back! I thought I’d never dance with you again.” So this was a ballroom dance. I do swing dancing. [Inaudible] fast music. But I also am a ballroom dancer.

Dan:   Yes.

Ted:   And blissfully, I danced to a Viennese with waltz on a fantastically large ballroom floor the other week and it was just heaven. It was like flying. It was just fantastic. And I came off the floor and she was puffing and panting. She’s ten years younger than me. And I wasn’t even drawing breath. I was just fantastic.

Dan:   That’s great to see you wearing other dance instructor, you know? How cool is that?

Ted:   This is great.

Dan:   After years of CFS, going from like 10 and 20 seconds a week to puffing out your instructor.

Ted:   And then it’s just all the other things I’ve noticed especially on the physical side. Last year, I went skiing. Last season, sorry, it was this year. I went away in January. I had a fantastic two-week skiing holiday. I’m a pretty advanced skier in my ability and all my ski chum, mates who I was with, again, were looking at me to get over my strength and how I was skiing and my endurance was just amazing. So yeah.

Dan:   It must have been pretty weird after sort of being offline for eight years. And then six months or I think it was six to eight months after you started the program to be like, going down the ski fields.

Ted:   Absolutely. Yeah. Yeah. I mean, and in really good shape.

Dan:   How do you feel at the end of the day, working?

Ted:   I feel great. I feel fine. Yeah. I mean, you get the odd day when it’s absolutely mega busy and there’s been loads of emergencies coming and I feel a bit tired, but that’s all I feel and I come home and I get my tea ready and I cook my tea and I sit down. When I go dancing or whatever I do, yeah, I just get on with it. It’s great.

Dan:   Great. Good on you, mate. Ted, I think we always appreciate life in a way that we never did beforehand at the other end of CFS?

Ted:   Definitely. Absolutely. But I think also, I think also, part of it, I mean, you asked me a question a little bit earlier on, how do I know I’m fully recovered? And I just feel so well, obviously. But part of that is, is that when I look back, when something like you’re just describing happens and you’re thinking, “Well, why is this happening?” And you can’t see it.Part of the problem is, is that our cognitive abilities are, especially if you had brain fog like I used to have, you can’t see things as clearly as possible. You just can’t see the wood for the trees almost and that’s like you say, someone else just looking in from the outside, it’s clear as day to them and they see it straight away. They can see it with a different perspective.

Dan:   Absolutely.

Ted:   Get help.

Dan:   Absolutely.

Ted:   Reach out. Don’t internalize this. Reach Out.

Dan:   Absolutely. Ted, thank you very much for inspiring hope and for sharing your insights today.

Ted:   Well, Dan, that’s very kind of you to say that to me. But thank you for inspiring hope and for all you’ve done for me. It’s a pleasure for me to be here today feeling the way I do and do this for you to say, thank you and on behalf of all of us who’ve been through your program.  We’re enjoying incredible new life that you’ve given us, really, through your program. Thank you, Dan so much.

Dan:   No worries. Okay, cheers. Bye-bye.

Please leave a comment at the bottom of the page!

Here are some social media images for sharing:

Ted ME/CFS  & PVFS quote next to tango dancers
Ted ME/CFS  & PVFS quote next to tango dancers
picture of food with text about Ted's change of diet
picture of food with text about Ted's change of diet
Ted's sudden ME/CFS PVFS onset in dental surgery
Ted's sudden ME/CFS PVFS onset in dental surgery
Teds PVFS recovery quote in front of sunset
Teds PVFS recovery quote in front of sunset

What do you think? Leave a comment

avatar
2000
  Subscribe  
Notify of