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