Distance, Effort and Mind

I had this thought the other day. I was sitting in the car, watching my son and his friend run to the lake, and as they got smaller, it struck me... things seem a lot farther than they used to. I lived in a house in University that was farther from the lake than I was at that moment, and I walked to the lake all the time. I walked all over campus. Heck, I used to walk to work when I lived downtown.

I wanted to go down to the lake. I wanted to sit on the bench at the boardwalk and take it in. And it was just too damn far. And that was ok, because if I'm honest with myself, it had already been a busy day and I had already done a fair bit of walking. And so I started thinking instead.

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.

The Chronic aspect of Chronic Illness

I hope one day I can get off this see-saw.

I've been re-reading some of my older entries, and been quite surprised at how long I've been off work, how little has changed, and at the same time how much has changed. Some really strong themes going on, still... and probably forever.

In any case, I've been re-reading them because I've had a really rough month. I wanted to check, and yes, it's true, I've been in and out of my parents house now for about 18 months. I've been unable to function independently for over a year, and I don't like it.

I'm turning 40 this year. This is not what I thought I'd be doing at 40. I'm in the process of grieving again. My optimism is still intact, for sure, in a more cautious and tempered way, though. The events of the last couple of years are most definitely taking their toll.

I'd love to know if it's a common experience... I'm sure there are stages that people go through as the years of being chronically ill pass... Maybe one day I will feel up to looking it up. It would help me to know that others who are as affected by their illness go through similar patterns.

Presence and my Immune system

In the last few months, I've had several colds. The exciting thing has been that they actually feel like colds. For the last three years, every time I've had a cold, it's felt like an intensification of my usual symptoms. I didn't get runny noses, or congestion (although my sinuses did get backed up), coughs or sore throats. Now, though, that's exactly what happens, and strange as it may seem, it is great news! It means my immune system is working somewhat normally! When I wake up and can't breathe and my throat is all scratchy, I feel happy and relieved. Weird but true.

So with my immune system actually functional, my so far successful homecoming, and my energy reserves continuing to build, I'm once again feeling cautiously optimistic about my prognosis. Especially so because even through the several colds I've had the last few months, I've been able to stay present and relatively embodied. That is pretty cool - and a huge accomplishment for me.

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.

Up up up down

So as you may have noticed, I've had a period of relatively high energy and low symptoms. And now it's over.

Since January, I enjoyed a bit of a change, where I was able to get out of the house a little bit more, be at peace in my mind, and just generally emerge from my cocooned state a little bit. There are, however, common pitfalls in that state, and I'm afraid I fell into a couple. I am now in the process of forgiving myself for that, and of changing the habits of mind that led me there.

So what happened, you ask? Simple. I fell into old habits. I am used to doing and approaching things in certain ways (head on, full force and in totality). In the last two years, I've learned how expensive that is to my physical well-being. I learned how to pull back, and slow down. I learned to say no, and to do things a little bit at a time. It was hard, and at the same time, I had direct and clear reinforcement - periods of extreme compensation, where my body would remind me of these lessons.

Therapy

This one's going to be personal. I know what you're thinking, all my posts are personal. Yes, they are. But not like talking about therapy. I mean really, you can't get more personal. So why? Because it's come up a few times in the last little while, that I end up talking about my experience with therapy, and I happen to have an awful lot of it to share!

So what is therapy? In many ways, it's easier to say what it's not. It's not someone telling you how to fix your problems. It's not a friendship. It's not about exposing every aspect of yourself. It's not about just getting validation or being told you're awesome. It's also not about "oh poor me" "there there." It's not about blame or shame, or navel-gazing-style, or wallowing, or self-aggrandization. It is most definitely not just for people with mental health issues, severe or otherwise. It's not hard, but it's also not easy.

It is more like an exploration of what it is that shapes you and your relationship to everything in this world, including yourself, guided by someone who is able to compassionately help you see things you don't necessarily want to see, so you can get past them and live a happier healthier life. It's about airing the things you can't talk about with your friends and family and in doing so taking away their power over you. It's about getting through the harder bits and pieces of life without crashing and burning, and it's about personal growth. Sometimes it's fun, and sometimes it's really really painful.

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:

Universality and Uniqueness

Sycnhronicity is amazing. There was a lesson I needed, and the universe conspired to put certain people and things in my vicinity so that I could see it, should I choose to. You know I choose to.

So here it is. We are Universal and we are Unique - yet another paradox to ponder. The common threads, the big picture - when you look at life like that, you can see it - when you live openly, it is there. This is my story: I was born whole. I was broken. I hit rock bottom. I remembered who I was. I chose to be that, and I evolved. Life had ups, and downs. I continue to evolve.

It's a simple story. And common. And yet, the details of it are unique to me. Where and when I was born, my familial heritage, my teachers, my influences are only mine. My DNA is unique, my fingerprints, my physical being - there is only one like me. Even my sister and I remember our childhoods and the adults that shaped them very differently, and we were very close, in age, and emotionally. The reasons I broke, how I hit rock bottom, how I came to remember and the ways in which I evolved are all in detail only things that I could have experienced. My thoughts are my own, born of each individual experience on this planet. Mine and only mine. Nobody can ever share my unique perspective. And yet. My story is universal.

Rambling Update

I've been wanting to write for a while, and I just can't seem to figure out what it is I need/want to say.

I am doing pretty well. Survived the Jewish and family holidays, and all the discombobulation of schedules that they inevitably bring. Adding to my disorientation were changes in my son's schedule due to relatively mild complications in his stepmom's pregnancy and impending birth of his half-sister. I was sure it was Monday all day Wednesday. It was not. It was indeed Wednesday. I checked. Various times. It was Wednesday every time.

Health-wise, I was very relieved to hear, and am so super happy to report that these shifts and changes did not deplete my slowly yet steadily growing energy reserve. YAY! Although they did tire me out, and I had a hard time maintaining my levels of peaceful acceptance. Especially when my house was playdate central.

Another September

One of the super cool things about having this blog, is that I can go back and remind myself of how far I've come on this journey of mine.

Last year, on the eve of Rosh Hashana, I wrote:

"I have a feeling this coming year will be different. I think that while this will all continue, I will find my way through it, and reach a place of wholeness and clarity that will envelop the paradoxes and cradle them, much like the yin-yang."

I think that was rather prescient of me... I still have a ways to go, but I am getting more and more comfortable with paradoxes and have a much greater capacity for stillness and quiet than I did before, and I am getting comfortable now with fewer labels and absolutes, with uncertainty and unpredictability.

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.

Real life, Meet Blog Life

I've been musing for a while, as you know if you've been sharing this journey with me, how open to be with the details of this whole extreme healing situation, with people beyond my most trusted allies (yes, I've probably been playing too many RPG's) for a great many reasons. These are the three biggest:

One - many people, and many doctors in fact, do not believe Myalgic Encephalomyelitis (ME) is real. And if they do, they probably know it as Chronic Fatigue Syndrome (CFS), the unfortunate names that leads to a great many different types of misunderstandings, like - gee, I'm always tired too, what's the big deal? The fact is that much of Western society is perpetually tired. This is not fatigue, and there is a big difference which is unfortunately not widely understood. Also, in ME, fatigue is really very very tiny part of the problem, and more of a side effect - you can read all about it on my Symptomology page. My story could perhaps convince some people that this is indeed a severe and very real illness, or at least raise little bits of awareness. On the other hand, I could face backlash.

Two - my personal and professional lives are very much intertwined, what with my Mom being my boss but not really, and my son being friends with my former students and whatnot. So to open up in my personal life to casual friends and acquaintances, means opening myself up in my professional life, and opening up in one's professional life is not normally considered the correct and professional thing to do. Especially when you combine reasons one and two. People who lose respect for me in a professional situation may very well project that onto my mother, (although that is less and less likely the longer I am on medical leave) so it is not only my professional life, but hers as well.

Telepathic Teddy Bear - My Body's a Question

No, there's no answer. That's the point. I thought my body was a riddle, or an enigma, or at least very very confused. But then I heard this song, and my perception changed. It's a question, without an answer, and that makes it ok to stop looking for the answer that does not exist.

I ran across this song several months ago. My cousins were promoting their friend's new album - Reflections, by Telepathic Teddy Bear.  I listened, and listened, and listened, and for months now, this song keeps popping into my head. The whole album is great, but this one, well...

http://telepathicteddybear.bandcamp.com/track/my-bodys-a-question

I somehow don't think the composer ever intended it to be interpreted as I do, but that is the beauty of art. The artist puts something forth, and meaning is created somewhere in between the output and the reception in the back and forth between artist and audience. I don't know much about the composer, except that he is originally from Mexico, and I can assume safely that he is in his early 30's. I have no idea what challenges he has faced in his life that have brought him to the point of writing poignant music, but it doesn't matter so much, because art transcends personal experience and becomes something that speaks to the shared human experience. This song does speak to me, and it speaks of my own struggles to let go of my deep desire for control and ultimately, answers.

Change and the Physiological Response

Oh. My. God! I just got it. I wrote the title to this, and I got it. See, this is why I blog! Wow.

I was about to write that my dear friend, Maggie, who sometimes comments on my posts, came over last night, and we both being so intrigued by life, brains, and personal growth, got to talking about my brain and symptoms, and those of someone close to her with a mental health issue, and how they compare (a lot of them are frighteningly similar). Then I wrote "Change and the Physiological Response" and I flashed to this morning, and my involvement with the Montessori Canadian centenary celebration, and my involvement with people in general, and my distinct need to cocoon, especially when flaring. It all makes sense now.

Ok, let me go back a bit. Before I went into a state of extreme healing, I had some resistance to change, as we all do. However, I was also incredibly spontaneous, and made a real effort through most of my adult life to let go of that, and I was quite successful - you have to be to a) live with my family, and b) work in a Montessori setting. No option. At all. But since I've been home, I've been getting this really strong reaction to the slightest unexpected situations. I know how it comes off - it comes off as me being cranky and stubborn. But it's not - it's an actual physiological response.

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.

Outed

I have been very fortunate as a person dealing with chronic illness, and especially ME. I know that there are gazillions of people out there who don't believe ME is real, who think it's all in our heads etc. etc. etc. But luckily, I have had to deal with very few of those. Of course, those were all health care professionals, so I'm not sure what that says... but still.

The vast majority of people who know me, and know that I have ME, are very supportive and understanding. That's because not many people outside my immediate circles know. They know I'm sick but not with what. And that has just changed.

Since I got the diagnosis a year and half ago (holy cow time flies), I've not really cared who knew and who didn't, as I prefer living my life as openly as possible. But, because of privacy and political issues at the school where I was a teacher, and am now just a Mom, I kept it quiet, and politely explained to all who asked that I was not at liberty to discuss my actual diagnosis. But now things have changed.

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.