Landing

It's been about a month now that I'm home. It still feels like a new experience. I'm most definitely still in a period of adjustment and reorientation, and I am more at peace with that than ever before.

My kitchen has yet to back up to the point I have to call in for reinforcements. A day at most of unwashed dishes. We've done the laundry - once (it's a good thing we both have plenty of underpants). We mopped the floor in the entryway once. I've had a few showers. My son is having regular showers. We're both sleeping well. We're both eating well. My fridge is not full of rotting food.

Coming Home

Today a friend told me she misses reading my blog. Her saying that meant so much to me, that I've decided to see if blogging still fits me.

I did not return to my home in June. I returned to my home just in time for winter break. I returned with a child who is almost one year older. With my health in steadier, yet not all that much "better" shape. With the determination to change whatever needs to change so that I can stay here, and start to live a more independent life once again.

My energy leakage has been patched up, and I have spent the last 9 months learning how to keep it that way.

Quick update since the last time I wrote, for those who like to know what's going on medically speaking... I have started the GcMAF treatments, and I still cringe every time I have to inject myself. The result however, is a much steadier functionality level - an evening out of the see-sawing if you will - and a faster bounce-back from smaller decompensationary periods. I've been taking dessicated thyroid, which has increased my energy levels (yay!) and decreased the cognitive dysfunciton (double yay!). I've also tested positive for mycotoxins, and have begun a detoxing/binding treatment, to be followed by something or another that will actually get rid of them.

Being home again has been a process of re-orientation and rediscovery. I am grateful to the friends and family who helped me get myself settled, and so very very proud of this child who is taking responsibility for much of the housekeeping.

Since we've come home, we've already dealt with the ice storm, a cold for him, a cold for me, Christmas, a stomach bug for him, and New Years. And I'm still here. Not bad...

I am most enjoying the quiet. The shared quiet moments, like right now. These are the best!

Climbing Out Ever So Slowly

Last time I wrote, just over 3 months ago, I was scared and anxious about my energy leakage. Turns out I was right to be. I also expressed that I was sure this was another moment of growth. I was right about that too.

So what actually happened? Well, as my Facebook and real-life friends know, I was hit by a 'viral event', which turned into a serious sinus infection, and eventually developed into a full-blown 'immune event'. Quite literally overnight (again) I found myself going from feeling moderately unwell to 'holy crap I can't move, and how the hell do I make a cup of coffee again?' - the cognitive dysfunction was so bad that I had to ask my mother to make the decision to have me and my son stay at her house that night.

Slowing down

Last time, I wrote about how I would love to find a way to slow down when life is speeding up around me. I am super happy and proud to report that I did it! In fact, I was sure it had been at least a month since I blogged, and that I'd been off Facebook for several weeks. Turns out I'm ten days short of a month, and my fb hiatus lasted at most a week.

That's how slow I've taking things.

The most wonderful part of all of this, is that it's all in my head. No really, it's all in how I choose to approach the situations in which I find myself. Which means that part of it is actually in my control! What an incredible discovery that was for me.

Quieting my Overactive Brain by Shifting Attention, and the End of My Insomnia

It is interesting to me that the post I wrote about insomnia back in February is one of the most-read pages in my entire blog. There seem to be an awful lot of people looking for solutions to insomnia related to illness and/or overactive brains. Insomnia, true insomnia, is devastating (Fight Club wasn't all that far off!). I want to thank the reader who e-mailed me privately to tell me how she thought she was alone in this; you inspired me to come back and share my answer to you with the rest of the world. And then some :)  Because in thinking about what I wrote you, I realize that finding a sleep solution was very much tied in to how I distract my brain, and how different that is from truly quieting it. I am hoping to find a more permanent, quiet-based sleep solution that requires no distraction in the long run. In the meantime, though, I'll do what it takes to get the sleep I need!

I did find a solution that works for me, for now, and since there seem to be so many people looking, I will share it, even though I don't believe there is a one-size fits all.

First, I followed all the standard Sleep Hygiene rules - I'm sure if you've been struggling with insomnia, you know all about these. The most impactful of these for me was leaving my laptop downstairs when I went to bed. None of that was enough for me, though, because every time I turned out the light and lay down my brain started up again. So I threw out one of those rules, and got out my book again. Here's how I got back to sleep:

Energy Reserves

We have word, and the word is good.

I am now at the phase in my healing where I am starting to build a healthy energy reserve! This is so super exciting, that I need to really be very careful what I do with that excitement.

When my Osteopath finished her treatment yesterday, she turned and said "Now we need to have that talk we have to have when people start really healing." The talk consisted of her explaining how the energy reserve works, how to cultivate it, and to not under any circumstance for any reason try to start anything new for at least 12 weeks.

So I am taking from now until 2013 as an extended break. I am determined to focus on integrating all the psycho-emotional and spiritual growth I've experienced over the last two years, to ensure that should I regain prior levels of energy, stamina and ability, I will continue on the path I have begun.

Identity Breaking

My Osteopath is back! I am a happy happy girl. First thing after catching up, was treatment to help my body integrate the immune-boosting-bug-killing pills I'm taking.

I am glad to report that I am no longer feeling ill effects from the Transfer Factor, and that one pill every three days seems to be working very nicely for me. Apparently, not having immediate ill effects, however, does not mean my body is actually responding as well as it could... thus the jagged ups and downs, and the extreme reaction to air pressure drops, and other such variable reactions to various stimuli. I can honestly say that I am feeling remarkably better this weekend.

What I am now processing is the idea that I would be very well served, especially in my healing, by not attaching myself - boxing myself in, if you will - by creating and re-creating identities and identifiers for myself.

Getting Ready and the Herxheimer Effect

This week, we are going on our annual camping trip. If you read the posts about this last year, then you know we go to a beautiful place, with the same people every year. We've been doing so for 6 years now, since my son and the other family's oldest daughter were very little. Every year since, we've had other families join, or not, with varying numbers of people.  Last year's trip was really great and we all know what to expect of me this year - basically, nothing.

The counterbalance to that is that my son is getting older and more capable. Last week, at the cottage with his step-mom, he loaded and unloaded all the groceries, and pulled the kayaks in and out of the water, all by himself. Camping, he is all set to build and strike the tent, pump up the air mattress (which is a major change for me as of last year - I usually go rough, jut a mat, but my body has needs now), and carry all our stuff. Now, will that change again when we get there? Probably, a bit. Although the other children are becoming more involved in the set-up as well, and that helps him stay on course.

This weekend my sister took me (in the wheelchair) to Canadian Tire to pick up the last few things we needed - more ice packs for the cooler, a new camping chair - stuff like that. Step one, done. Some of the camping things from last year are still in the dining room, so I sorted those out. Step two, done. Went to the basement and assessed what needs to be brought upstairs. Step three, done. Ordered groceries online, to be delivered today. Step four, partially done. Started fixing the recliner that broke last year, covering it with duct tape (yay duct tape!), doing bits and pieces at a time. Step five, partially done. Still need to pack everything up and bring some things upstairs. Steps six and seven not even started. But I'm doing well with this whole getting ready in small and mangaeable steps thing.

So good.

The other day, I woke up feeling... ok... and it was so... weird!

Last week was a little bit difficult, quite trippy, and very much a time for turtling. My Osteopath, bless her soul, has started to work on my brain. When I saw Dr. Nathan in California, he had mentioned the blood flow to my brain causing swelling of some sort likely being an issue, and that there was a possibility that the Osteopath would be able to do something about it. If she could not (and he did say then and there that he is not able to do it himself through osteopathic treatment), he could do it using a big fancy SPECT machine.

At the end of our last session, she said that she had started working on it. Apparently, there is torsion (quite literally - a twisting compression) in my brain stem, occipital lobe and part of my temporal lobe, which has been there for a very long time. This explains so very very much. I mean really! The brain stem is responsible for heart rate, blood pressure, breathing, and so forth. It also has to do with motor control and sensory analysis, and - oh, get this! - sleep and levels of consciousness. Hmmmm. The occipital lobe is all about visual processing, and the temporal lobe  - well - it is responsible for hearing, memory, meaning, and language, plays a role in emotion and learning, and interpreting and processing auditory stimuli. Yeah. Explain some of my symptoms much?

Graduations

This time of year is always emotional at every school. I, being an emotional kind of person, have always wanted to make the most of it, and help my students see how moments like these, of endings, beginnings and in-between moments are so very ripe with opportunity for growth and self-exploration. But this year I have no students. So I guess I'll have to do it for myself.

The 4 boys who started the Middle School adventure with me are, however, on their way out of our cocoon of a school, and about to learn how to fly.  My son is moving from the Lower Elementary to the Upper Elementary, and my nephew is moving from the Casa to the Lower El. I may have no students, but I still have plenty of transitions to feel my way through.

The furthest from my daily life are the Middle School boys. At this point, it has been one and a half years since I was their teacher. And yet. And yet I've been involved in every major decision, and several smaller ones regarding their education during that time. I've been apprised of their progress, and kept abreast of their development. I still feel a very strong emotional attachment, and I probably always will. One of the things which makes a Montessori Middle School, and especially ours, unique is the intense focus we place on two things: self-reflection for both students and teachers, and the mentoring relationship. When these are in place, a bond will develop. And since I am personally so intensely self-reflective anyway, and so highly empathetic, it should come as no surprise to anyone that I formed very deep bonds with these students, even though I had them to myself for only a few months. I was their music teacher for several years before that, and music, when taught Andy-style, well, yeah, it tended to lean towards self-expression and (dare I say it?) self-reflection, so over the years they came to trust me, and when we opened the Middle School, we were ready to open our hearts.

Satisfaction and the Job Partially Done

Satisfaction comes from a job well done. In my case, I am learning to be satisfied with a job half done. Or even a quarter done. But when I finally get to the end, oh, how the satisfaction fills me.

I am writing this today as a reminder to myself, to not get discouraged when I can't do things the way I am used to and like doing them, when I can't finish them, or when, like yesterday, my biggest accomplishment was plopping a piece of chicken and some frozen spinach in the microwave.

Once again yesterday I found myself on the down slope of the ups and downs. Today feels like it could possibly be a little bit better, but it's too soon to tell. The weather shifting, and the rain storms all mean air pressure changes, which for me, mean woozy, cognitively-challenged, less energetic days. All the more reason to allow myself to feel good about doing just a little bit.

I had a wonderful talk with my therapist about tidiness and organization. My house is not like I would like it to be. It is not like it was before I fell ill, and it is miles away from what any of my classrooms ever were. My classrooms were anally organized, because Montessori environments have to be in order to function. My house less so, but still, everything was pretty much "just so." My books are organized by genre, then by size. My knicknacks are placed in ways I find aesthetically pleasing, as is everything in my kitchen (yes, I did originally organize my kitchen in a way I would find it pretty - it's a huge motivator for me). Even when I was perfectly well, there were a few things lying around not in their places - my house was casually lived-in, and perhaps more cluttered than some would like. But it was perfect for me.

Landed

The airplane ride was much easier than I imagined it would be. My time in the airport went very quickly. The getting to California, the voyage itself, was really, surprisingly, easy, and does not seem to have led to any kind of exhaustion. YES!!!!!

So far, of San Fransisco, I have seen Fisherman's Wharf, Ghirardelli Square (sp???) and the hotel. And I have to say, I am really enjoying being somewhere different. I've always loved to travel, and being sick has not changed that in the slightest.

Stairs and Swelling

The last couple of days have been amazingly good, in terms of my energy levels, and mood. I feel like things are coming back together for me, and I could not be more pleased. However. The last few days have also brought on an eczema flare like I haven't had in 8 years.

I woke up on Monday, and my ears were a little itchy. Then in the afternoon, so were my hands, and my cheeks a little. And then the red splotches appeared. In what I can only imagine was a mis-guided effort, I iced one of my cheeks last night, because it was burning. When I woke up this morning, I could barely see out of that eye, it was so swollen.

In the meantime, this week, I have had some really great moments; I surprised myself by making it all the way up the stairs in one go, I went home, I did some pre-packing for the trip to Cali, and I even brainstormed with my Mom on school stuff.

Moments of Stillness

Almost a year ago, I wrote this post: being productive vs just being
I'm still figuring it out, but I finally understand just how important this is to my well being.

I am coming to understand, through the patient ministrations of my Osteopath, and through my own sojourning, that stillness is not something to look for, or seek, but rather something to allow. Today I actually fell into it, almost literally, a couple of times. And there was silence in my head, for a couple of seconds. It was so strange.

Almost like a pressure, a space filling, like a bubble, or a balloon, or the opposite, a vacuum being created by the pulling apart of my senses.

Once I got lost in the trees. They were swaying so prettily. And there was a squirrel and everything (a black one, for those folks who don't live in Ontario and get excited by such things). And then my thoughts intruded, and I watched them go past for a bit before they became conscious.

Overexerted, but for a Greater Purpose

My physical being is in a really serious mode of compensation. My body is trying so hard to heal itself, that it spares no energy beyond that and the basic task of keeping me alive. Part is the cold of which I am still complaining. But part was a choice I made this weekend to overexert, and which I still think was probably worth it. I'd just forgotten how bad this thing could really get. Post-exertional-neuro-immune-exhaustion has hit, and hit hard.

My cane has made a reappearance in my life. The last few days I have made it up and down the stairs very slowly on my bottom. I timed it, just to see. 6 minutes to get up the stairs. No joke, no exaggeration. 6 minutes. One flight. But I can still do it. The stairs have not gotten the best of me.

My boy and I are at my parents' house again, being fed and coddled. It is absolutely wonderful to wake up and find a cup of coffee already made and waiting for me at the kitchen table. It is not, however, so wonderful that my laptop doesn't work here. So to use the computer, I dragged myself up the stairs.

Obligatory New Year's Post

Yes, it's true. 2011 is over. And naturally, as human beings, we look back at the year, with nostalgia, with joy, with pain... and we make plans for the next year. I am no different. Reflection is a natural state for me, especially now. So I am looking back, and amazingly, am doing so and feeling joy at all that has transpired.

Let us review. January was the month I received my diagnosis, and I started to really learn about what was happening to my body. It was when I made the decision to stop working, and utterly and completely changed my life. I spent most of January in bed - actually on the couch, because I don't particularly like lying in bed during the day. I figured out how to watch TV online effectively. And yet the world wasn't really spinning... it was actually slowing down... looking back, it was hard but not as hard as before I knew. Getting the diagnosis made everything start to settle, and the world stopped spinning, even though the changes were intense. I was very well supported through these changes though, as my family and I struggled together to understand what the hell was happening, and why, and what to do about it.

Yoga

It didn't beat me. Not really. Ok, maybe a little.

Yesterday I went and did the first real physical activity I have done in a year. I finally made it to the Gentle Yoga class I've been thinking about joining for so long. And it was gooooood.

The teacher was wonderfully understanding, checked in on me every once in a while, and was super compassionate. I checked her bio out on their website, and like me, she worked "normal" jobs until something more fulfilling called to her when her child was born. The postures and sequences themselves were simple, and not what I would have considered challenging. In fact, we did many of my favourites for relaxing - pigeon, up the wall butterfly, boat twist - so there was little actual stress, as we focused more on stretching and opening.

One Year.

One year ago, my remission ended. I knew my immune system was trying to deal with a cold, and instead of lying down and letting it pass as I had during the rest of my remission, I pushed forward, because my trainer was in town, and she was speaking at a parent evening along with one of my students about the continuum of Montessori education. That was an event I could not miss. And I'm still glad I didn't miss it, for all it cost me.

I was so proud that night. My student, let's call him Gord, had written a speech about what he gained during each level of schooling. He wrote beautifully about his memories and thoughtfully about what he'd gained as a student at our school. I barely helped him polish the speech, more listened and helped him to do it himself, just like any good Montessori teacher would do. It was so good, that even his mother couldn't believe he wrote it himself.

Volunteering - second day, better results

Last time I wrote about being in the process of changing my all-or-nothing, perfectionist approach to life. It is a slow, baby-steps process, and that's why I think it's actually working. Previously, I had written about my anxieties regarding going back to the school on a volunteer basis. Putting the two together today was fan-frikkin-tastic, and I am super proud of me.

This time, instead of realizing I was being a perfectionist an hour into my time, I walked into the school with two intents: one, to let my work be good enough and not aim for perfection; two, to see how that would affect me. The result: the work is almost as good, and the differences are such that nobody but me will ever know. I feel great about doing what I did, and how I protected myself from myself.

Transitions, transitions

When I wrote the title to this post, I had the song "Traditions" running through my head. I think it's a lovely irony :)

I have realized recently that I am in a state of transition unlike I've had in a long time. It's nice, because it's not a chaotic transition, but a gentle one. And I like where I'm going, so I'm happy to take it slow.

First off, I'm starting to really see this extreme healing state as a gift that my body gave me.

I realize that while what I have did not start in my mind, my mind made things worse. My body was trying to send me messages for a long time, and each time I didn't listen, it sent stronger signals, until it just sent me home. It's like a parent with a child - the first time you do it, you get a scolding, but by the eighth time you may just get grounded.

I feel no guilt about this, no shame, no blame for not hearing the signals. I want to be clear on that. What I am dealing with is still an unknown, but all signs point to it being viral, immunological or neurological in origin - not psychological, not somatic, not mental or emotional. It is a physical reality.