I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
To send me a private message, please e-mail me: flylittlewordsfly@gmail.com
Subscription links are at the bottom of the page

Friday, 11 April 2014

The Cold That's Not a Cold

I had a great phone session with my doctor in California. He suspects these colds I'm having are not all colds - that the symptoms are actually due to over-stimulation of my immune system due to a combination of the viruses that hit me and the meds I take to stimulate my immune system, and of course, also due to the nature of ME. Oh yeah, and to those pesky mycotoxins in my sinuses.

You see, part of what causes the fatigue and neuro-immune dysfunction has something to do with the production of cytokines being not quite right. There are already too many. So when I get sick and my body starts producing more, then there's a really big overload. Which leads to greater fatigue, brain fog, and more viral symptoms. Apparently this cytokine thing also affects cortisol? And together they make sleep really tough to come by. So add a layer of lack of sleep to all that. Oh yeah! And then when I take my immune-stimulating meds, even more cytokines get produced, and I end up a big gooey mess. I'm sure there's a lot more to it than that, but that's my understanding at the moment.

Now that I know that, I can handle the whole thing quite a lot better. I'm less afraid of this turning into a repeat of last year's 9 months of being house bound at mom and dad's. I'm more confident that I can recover from a cold, even if it takes a little longer and knocks me out a little harder. Now I know - first sign of a cold, drop the immune meds until it's gone.

Which means I have to be able to sense the first sign of a cold. Which means I have to stay in awareness of what's going on in body. Which means I have to stay out of my head. And if you know me or have read - oh, pretty much any of my entries - then you know that this is not an easy thing for me to do. I'm still working on it. Been working on it on and off for 15 years or so, and diligently for the last 3. I feel like I'm really getting it though.

I had an awesome enlightening moment the other day. I was asked to describe the sensations in my body. My response was "I can't do that right now, because there's music coming down from upstairs, and I'm totally distracted." And then I burst out laughing, because I realized that what I was saying was, "I can't feel, because I'm too busy trying not to feel what I'm feeling so I can feel what I'm trying to feel." Uh-huh. So there it is. Feeling is. As Yoda says in Jedi, "Do or do not, there is no try."

There is no try in feeling. You feel or you don't feel.

And yet, I often try not to feel. That is energy not well spent. But I'm not there yet. I'm here. Noticing when I'm trying not to feel. Noticing when sensation gets overtaken by thought. Noticing when I'm nice and settled in a contemplative groove and I glitch. Noticing when I'm seeking, escaping, or in any other way not being here. I feel like a broken record, because I've written about this so many times. But it takes a lot of repetition - a lot of practice - to change such an ingrained habit - one that I created as a coping mechanism and which has shaped me.

So here I am, at the tail end of round 2 of antibiotics, not taking immune meds, and flitting in and out of sensation and thought. Not bad. Not bad at all.

1 comment:

  1. Hi Andy! Not easy to understand. Had to read it a few times... but got it! You write really well. Difficult to get out of one's head. Maybe we should do a session with my Kabat-Zinn CD when we get together. I told your Mom about this book and CD I lent Simon so MS might do something with it in their daily meetings. ('Wherever you go, there you are').
    See you soonXXXX