Autonomic nervous system dysfunction, protracted psych drug withdrawal, CFS, Fibromyalgia and why I still limit engagement on the internet

I wanted to do a follow up post on this one: Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common.

I introduce the work of Dan Neuffer in that post. He’s done a brilliant job documenting and explaining how the autonomic nervous system appears to be of foundational concern for CFS, ME and fibromyalgia. I made the link that it’s clear that protracted psychiatric withdrawal syndromes, too, also fall into his theory very neatly. It’s worth reading the initial post and viewing Dan’s videos that are in that post. His book is excellent too and anyone wanting a deeper understanding of the issues should read it. I’ve not seen anyone else pull together so many of the issues I think about and talk about on this blog in one dynamic whole. What a joy to find it. He understands deeply how everything matters. This holistic understanding of our natures and particularly this illness, is the cornerstone to how I’m healing. I share my healing story in the article on Mad in America here: Everything Matters: a Memoir From Before, During and After Psychiatric Drugs

Anyway, I’m bringing up Dan’s work again because in the initial post I share that it appears he was ignoring me on twitter and I imagined he was dismissing the connection I’d made between CFS and protracted psychiatric drug withdrawal syndrome (and other chronic illnesses). I was disappointed by that. I did, indeed, not hear from him for about a week. But when he did respond it was clear it was due to a twitter glitch and not my worst fantasies. He was not ignoring me. I wanted to make this clear in this separate post since many don’t read updates in posts once they’ve read it initially. Dan is a wonderful guy who gets it!

I ended up talking to Dan on Skype for over an hour and was simply delighted. He truly understands this illness and the healing process I’m going through and hence he understands most protracted psychiatric drug withdrawal issues even without the direct experience many of us have with psych drugs. So, I highly recommend his book: CFS Unravelled – One man’s search for the Cause of Fibromyalgia and Chronic Fatigue Syndrome and the Discovery Essential for You To Recover

If you need to be reminded as to how it is similar to protracted psychiatric drug withdrawal syndromes please read: Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common.

The best part of talking to Dan, a man who has been completely well now for 3 years after having been very ill, much like I have been, is that he could tell me it was clear that I was headed down a healing path too. It’s often hard to trust that even now with all my improvement as I do remain quite ill. I was pleased, also, that I could tell Dan about how I am exponentially (no joke) better than I was one and two and three years ago, but that I am still very sick. He understood that. So many people have a hard time understanding what that means. How can someone be so sick as to take this long to heal? This is a very complex illness.

In any case, he made some great suggestions for my continued healing that I am implementing and considering. One thing he told me was to be careful with my work here on the blog as he rightfully suspected it can be draining in multiple ways. I told him how I’d already greatly limited correspondence etc. And yes that remains very important and so I’m reiterating my need to make boundaries and limits with you my lovely readers who have in so many ways also helped me heal as I’ve been also blessed to share information with you.

The last time I shared my need to keep safe and healthy boundaries for myself on Facebook I said:

Someone just inquired again about contacting me personally for private correspondence. I post on occasion about how I’m not able to do that since people often ask. I will share my response to the person today.

I’m sorry, I continue to not be available for personal correspondence. I don’t have consistent energy or reliable amounts of energy and it simply sets everyone up for disappointment. I also most likely won’t return to such open correspondence ever. I was working up to 80 hours a week when I answered all my email and comments on the blog…that’s simply not sustainable as all my work is done on a voluntary basis. So I’m sorry. I’ve learned to make healthy boundaries for myself. I wish that there was meaningful support for everyone out there. I do understand what it’s like to feel like you don’t have enough support. For more information on the necessary boundaries I’ve placed see this post: A personal note to my readers — why I’m not available for correspondence.

Basically I’m still in serious healing mode and that remains my priority. I’ve been loving having a bit of contact with readers on Facebook where I do not have messages or posting for readers enabled, but comments can be left on posts. That’s perfect and it’s lovely to re-engage with folks a bit. I was missing interacting with my readers, but I do have to limit it. So I do welcome you to “like” my Facebook page or follow me on twitter which is also another way to interact a bit.