More on Routine and Change

My enthusiastic intent, on starting this, had been to post at least every other day, if only a little, about the experience of going through the ANS Rewire program. Even after 4 years of this condition I can still overestimate what I am able to do, however minimal the increase might seem.

Sleep and fatigue are two of my major symptoms. Although my sleep over the last few months has not been the worst that it has been, it has been taking a dip again recently. Is it since starting this program? I think perhaps the thought of actual recovery and the excitement of that, however low key, is a trigger. Four hours has been about it over the last number of nights. That takes its toll. It’s surprising the difference between averaging four and averaging five hours can make. Five hours, which was what I had improved to for the months prior seemed almost human relative to how it had been. Four hours does not. I don’t perhaps seem different on the face of it – I can hold a conversation, I can move around – but the exhaustion in my body, and particularly the brain fog and inability to concentrate, is increased and very noticeable. I accommodate it, because that’s how it is.

That is precisely what I realised when I was looking at routine. I have a very safe routine, flexible but safe, that enables me to manage symptoms. My focus is constantly on this. All my choices are based on the question of how am I managing symptoms and what do I need to not do in order to avoid relapse, avoid more exhaustion, avoid having a flare up? That’s what my time is spent doing. Every moment my decision making is based on taking my cue from how my body is feeling – everything revolves around that. I allow the condition of my body to dictate how I spend my time.

So it’s no wonder that the introduction of extra things to be done in the day, like these daily lessons and action steps, however small, simple and clear, causes unexpected resistance. How can I fit that in when it takes all my focus to do the basics? Which raises the question – how much am I attached to this way of being that introducing potentially positive change is uncomfortable and basically, unwelcome?. Unwelcome at a sub-conscious level, not at an intellectual level. I absolutely want to change and move into full health. And that means giving up the ideas of managing symptoms and letting my body run the show. That realisation is decidedly uncomfortable.

I didn’t think that’s what I was really thinking. I don’t like admitting it, but that’s what’s become apparent. I thought I liked stepping into the unknown…

The videos in Dan’s program are, at the start anyway, about 30-40 minutes long. I listened to the first few and on a review with Becky, my buddy, I realised that I was skimming them. I was finding the information incredibly interesting and inspiring but I wasn’t really taking it in. I wanted to move on fast. My concentration levels are so fuzzy it seems impossible to just sit and listen, but I decided to go back 3 or 4 videos and start taking notes, slowing things down. And as I listened and jotted things down it stopped being ‘taking notes’ and became full on transcribing. The information was so relevant, and actually so exciting that I wanted to record every word and really take on the … (there’s the thing with CFS, words just disappear from one’s mind, the word is almost there, but not quite… ), take on the …  on board.  Edit: I think I’m trying to say something about the significance of what Dan’s saying, the import or implications of the information. 

There is something about writing each word down, by hand, that impacts the attention differently. It felt like the difference between being in a car and driving pretty fast through an area and getting out and walking. When you walk you see everything differently, you notice little things that were clearly in your vision as you rushed through but you didn’t really look at – you notice the significance, the detail, the beauty of them when you’re out of the car.

That really did slow things down. It takes quite a while to transcribe 40 minutes. And I listened to someone who’d been through the program who said that after he’d listened to the 6 weeks of videos he went back and listened again, and then again and then went back and transcribed them all. And that reminded me that there’s no race here, I don’t have to get it right first time through. I’ll hear what I’m ready to hear and if I keep at it then I’ll hear the next level later on when I go back and listen again.

It’s about repetition and applying the information. As you keep consistently applying it things start to open up so that you are ready to take on new insights at deeper levels – unpeeling the onion.

But the main thing I’ve realised is that I have somehow buried quite how much the symptoms of this condition impact my life by my unquestioning accommodation of them and how I now automatically arrange things around what I am unable to do in such a manner that I am as comfortable as possible within these limitations. Whilst this is understandable (to those who’ve had the condition) and probably sensible at some level, it means that I have resigned myself to not being able to do very much at all. So being requested to ‘do more’ through these lessons is certainly out of my comfort zone and I’m up against resistance. I had a kind of comfort in my acceptance of limitation. I hadn’t expected to find the lessons hard as they really are not, but they do require attention and application.

Rather than expecting myself to logically go through the program in the ‘normal’ manner that I would have expected when I was well – in fact, I would have expected to go through it more than competently and to get ‘top marks’ were marks being allocated – I am slowly realising that I can’t just intellectually appreciate the fact that we can only do what we can do but I have to take it fully on board for myself… truly I can only do what I can do, and that small steps are ok. As long as I keep taking at least one small step when I can then I’ll be making progress. I want and expect large and swift steps from myself, but that’s an old way of thinking that I thought I’d dropped. It’s good to be challenged with it again so that it no longer need lurk in my psyche, eternally beating me to go faster, to do better.

So, clearly, I shan’t be going through this as fast as I had expected… but, to be sure, I am and will continue to be going through it. And these posts will be more intermittent than I had originally anticipated… but they may well speed up as health returns.


PS I listened to this recovery story today, which I found extraordinarily inspiring…           Lynn Lennon’s Recovery Story after a decade of illness




Week one and already up against stumbling blocks and resistance. But that’s ok. That’s what this is all about for me – seeing clearly my resistances and my unhelpful beliefs and ideas, exposing them and choosing differently.

I’m behind already. Altho, of course, there is no set time to do this in, no-one is pressuring me to do it fast, properly, well or any other achievement and critically focussed inner compeller. I can do it as and when I like. But the fact is I do want to do this. I have listened to enough of Dan’s videos about full recovery to have a real sense that this is possible, and I want some of that. I now want to be one of those people. And if I want some of that then I may as well follow the steps that many fully recovered people have taken, simply and straightforwardly, and not mess about with resistance and procrastination. I am doing this as a kindness to myself. I know full recovery, and perhaps even better health than ever before, is available to me.

Here is the first full recovery interview of Dan’s that I listened to one wide awake night at about 3 in the morning. Dan asks absolutely the right questions that someone who has the condition wants to hear the answers to. By the end it actually made me cry with respect and regard, these are epic and courageous journeys – it spoke to me profoundly, I found it deeply touching – Beth’s full recovery to becoming an Ultra Marathon Swimmer

What I didn’t mention previously was that I really like how Dan talks about not fixing anything. The body does not require fixing. The Autonomic Nervous System is dysfunctioning, but it doesn’t need fixing, nothing is broken. I want to go back and listen to what he actually says about that because I don’t want to distort what he’s said, and it’s important to me how I’m perceiving the body. The idea that nothing needs fixing fits in with my understanding of ACIM, which is a spiritual teaching I was drawn to some 9 years ago and which felt like a home-coming. But for this blog I’m going to focus on the ANS Rewire program – the non-dual teachings will be very present for me, but they will remain in the background as they’re not everyone’s path.

I have already felt overwhelm about getting behind and how much there seems to be to take in, and about my resistance to routine, which I’ve just talked about in a video I’ll post below. But I’m not going to pretend I’m doing any better than I really am in these posts. These posts are going to be simply about how I am experiencing the program and what honestly comes up. I want to get clear about what I really am believing. Not what I’m pretending to believe, or just intellectually understanding. No point in pretending I’m something I’m not – that’s one of the reasons I got into this whole shebang!

I particularly realise how hard I find it to concentrate and focus for very long. It’s not that Dan is saying anything that’s complicated and it’s not even a lot of information, but my brain has got out of practice listening in this particular way – or probably aspects of the brain are still dysfunctioning. It’s almost as if the words start to simply skim across the surface and don’t take root anywhere, and then I think, “Oh, I’ve missed something important, I must go back”. But I don’t go back – not so far anyway – and that then becomes part of the overwhelm, there’s already lots to go back over.

In my younger days people (men usually… always, probably) would often say ,”You think too much” which would prompt me to think, “Why wouldn’t you want to think? Why would you not think about these things?” But recently, my CFS counsellor has pointed out that I over-analyse, and that’s very true, I do over-analyse and over-think. I didn’t mind her saying that at all, it was helpful not critical.

I was listening to Youtube video on a recent ACIM lesson I did, where the speaker, Theo Poppe Jr said, “Don’t analyse, utilise your experience”. I loved that! Ha! I’ve been ‘thinking’ about it ever since, probably trying to analyse it…

Here’s the video with my thoughts –  Video diary on Routine


And here is a photo of a goal – I want to feel like this again. I must have been about 2 or 3. I do actually remember this very moment and it felt good. No reason why not to feel like that again.



Beginning the ANS Rewire program

I started Dan Neuffer’s ANS Rewire program yesterday, and having listened to the first video (after the three initial introductory free videos) I felt an impulse to record progress through a blog.

I’ve never done a blog before – often thought about it, never done it – so why not start with this very specific intent. My intent is to fully recover from CFS/ME and record my progress through the coming months.

Dan put the ANS Rewire program together following his own full recovery in order to help others – he explains it very clearly here About Dan. In fact, I think I read that he had made an agreement with himself that if he did fully recover he would share it, and much of that he’s done freely – I like that.

All of us who’ve experienced this condition to whatever degree and in whatever form have probably all spent a lot of time and money following up on ‘cures’ – I certainly have. I was very hesitant about signing up for this one, and took my time, because as the years pass by and one keeps trying different things an element of resignation can descend, almost unnoticed, along with deep skepticism. But I listened to a lot of his interviews with people who have recovered (not necessarily through his program, which I liked) and the questions he asked and the way in which he asked them spoke to me deeply – along with the way people answered and the way they described their lives before and after. I found the stories deeply touching and actually, rather quietly heroic. And I could detect this underlying theme amongst all these stories that had such a varying range of symptoms, such a varying range of triggers and such a varying range of ways to recovery. It all seemed ‘varying’ but actually there’s something that seems to run beneath them all, and it appealed to my old mathematical brain that likes looking past surface appearances and is still willing to see what’s really there.

A common CFS trait is to want to do things perfectly and for me that has often meant to do things to excess, to overdo, to try to get it absolutely right. I have a desire to say everything I want to say, right now, here in this first post, and to cover absolutely everything – like how Dan suggested choosing a buddy to go through this process with and who I chose and why, but I’ll tell that later. So it goes against pattern to just leave it here…

Well, almost here… but part of the ‘homework’ on session 1 was to do a video diary answering a couple of questions. Again, this video didn’t feel complete, I didn’t say everything I wanted to say and I sound like a zombie… but here it is anyway…

Video diary for Session 4 (Day 1) of the ANS Rewire program