International Conference, Check. Recovery, In Progress.

I have attended a great many conferences in my life, local, international, regional, professional, volunteer, spiritual - you name it - but this is the first time ever I attend a conference where beds are available to attendees in a quiet room off to the side attended by paramedics.

Yes, indeed, you know you're at a conference for sick people when...

This was a really big event. There were doctors and researchers and activists from all over the world, all talking about ME/CFS. They were there for several days to talk to each other, and for one day, to talk specifically to patients and our caregivers. Because this all happened to take place in Ottawa (last time it was in Oslo, I think), my parents and I decided to participate.

My Overworked Brain

Of the many things that surprised me during my appointment with the Osteopath is that she noticed my brain. I don't know how she does it, and I don't particularly need to understand it, either. What matters is what she told me, and that is that my brain never rests. Ever. It is completely and utterly overworked. I am hyper-vigilant. Aware of things that most people never notice. I am always thinking, planning, remembering, rehashing, conversing, composing, singing and wondering, all in my head.

I asked her if this is a common thing, because, you know, my brain automatically has a thousand questions when I am told things like this. She said that it is not at all common. Most people's brains have periods of rest. But not mine.

So what's happened since the appointment is I've turned that hyper-awareness inwards, and oh my goodness, I am overwhelmed by how true her statement is. It really never stops. I notice it now, when I'm waking up, when I'm eating, driving, walking, getting dressed... no matter what I'm doing - unless I concentrate on my senses with all my consciousness, there is always something going on up there. Even when I'm in a conversation, or when I'm watching TV or reading, I will catch myself going off on a tangent in my head. And it's fast. I also have to focus on the inner dialogue to be able to hear it - otherwise it's just background stuff that is constantly chattering away.

Osteopathy - the Montessori of medicine?

I have had three amazing days in a row. I can only attribute this to two things. One, the methylation protocol is working. Two, I had my first Osteopath appointment. And as I learned, osteopathy has little to do, and yet everything to do, with bones.

I came to Osteopathy on three recommendations, and I have a feeling I will not be looking back. I'm trying to be cautious in my optimism, but I don't know that I can be, or that I should be, anymore. The truth is that I am far more aware, and my energy has been as close to normal as it has been since I first relapsed back in December. The other thing is that from everything I know so far (which is not much at all in my brain, but lots in my gut) Osteopathy is to medicine what Montessori is to education. It is a completely different modality than that which we are used to.

To start off, as in Montessori, there is no official regulating body (accreditation bodies, and associations, yes, but no regulation) and nothing to stop anyone from calling themselves an Osteopath - at least not here in Ontario. So it is very much a buyer beware situation - if you want the real thing, you have to know what you are looking for, and you have to check that you are getting it. In my case, I was looking for an Osteopath practicing biodynamic Osteopathy, whose education is vast and includes several years of European study. I found her based on two things - recommendation and gut feeling. There is no doubt in my mind or my body or my spirit, that this is the right health practitioner for me at this moment in my life.

I think I'm coming out of the slump

Today has been a rough day, but yesterday - oh yesterday was amazing!

I think I am past the detox and initial reaction to the methylation protocol I started two weeks ago. I can't remember if I've posted about this already, but it's a protocol meant to boost the methylation cycle, a biochemical something or another that is apparently blocked in many people with ME. I did read about it, I promise, but I can't for the life of me explain what it is. I do know that it is important for detoxification, neural processing, energy production, immune system reaction and all kinds of other extremely important things that my body should be doing automatically. Many people who go onto the methylation protocol first experience an intensification of several symptoms before they go on to improve (or not).

Occupational Therapy has begun...

I met my Occupational Therapist yesterday. I am not ready to pass judgment on whether this will be a useful exercise, or if she will be able to help me. But I am hopeful in a restrained kind of way.

The idea behind occupational therapy is very cool, and very much in line with my personal beliefs and Montessori philosophy. The idea is that people are naturally inclined towards being occupied in ways that make us feel good. When something happens that doesn't let us engage in these occupations (not work necessarily, but things that we enjoy doing, need to do, or make us feel better), it can lead to serious implications for mental, emotional, and physical health. The therapist is there to help find ways of getting us back into those occupations.

Post-Exertional Neuroimmune Exhaustion

Along with the new definition of ME, there was a change in what we used to call Post-Extertion-Malaise. Now, having more understanding of what it actually is, the experts are calling it Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e).  In my non-professional opinion, this is a far more descriptive term for what I've been feeling these last days, and I welcome the change; terminology really does affect how we sense things - hence the science of semiotics.

The new name, being more specific, has indeed changed my perception of the effects of exertion on my body. Last week's Exercise ECG has had me flat out since Thursday (that makes 5 days now, and counting) to the point that I haven't even posted anything here, and have severely limited all the other activities that usually make me feel better. My experience of this crash has been different, because I've been able to really hone in on what I'm feeling, and most of it is indeed related to my neurological and immune symptoms, and that is where the malaise and fatigue are coming from.

Synchronicity being what it is, I had been thinking about this post when I logged into the But You Don't Look Sick forums, and saw a post in which MairiD'Anaxemurderer (gotta love the moniker) described what fatigue feels like (quoted with permission):

Exercise ECG

It's done, it's finished, and I don't want to think about it anymore... once I finish writing this. Ok, maybe after my other health care people re-interpret the results for me, because at the moment, they are absolutely meaningless.

My initial base-line measurements were all apparently quite normal. Yay. I started off pretty well on the treadmill, although I did tell them that it was faster than my normal pace. After 6 minutes, I was holding on so tight I don't think they could've pried my fingers off, and my brain had turned off all conscious thought, and all I could do was hold on and keep my feet moving. I practically fell on the bed with my eyes closed, and I honestly don't know how long I stayed there.

While I was lying there, they kept asking if I was dizzy, and I'm not sure if I actually shook my head, or if I just intended to. Finally, I was able to croak out to my Dad (thank goodness he was there) that it wasn't dizzyness, it was a full-out crash. I was eventually able to sit up and explain what had happened, and how all cognitive function basically shut down. But since that has "nothing to do" with cardiac function, I don't think they knew what to do with that information.