Overdue Update

Wow - it's been a month since I blogged. Yeah. Ok. Here's what's up.

Remember how I was concerned about November? Yeah, well, it was December that got me this year. Not as bad as the last few years, I hope, but I have been experiencing a period of rather intense compensation . One thing after another, and life just moving more quickly than was healthy for me. I would really like to find a way to slow myself down when life won't do it for me. I think that is a very key aspect to a longer-term recovery, in my case.

My month has included food poisoning, a burst pipe, parent-teacher interviews, family events and a huge heap of family drama, weather changes, school committee meetings, and barometric pressure drops, topped off with a little cold I caught this week. So yeah, at least I know why I'm in turtle mode. No mystery here!

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.

November

Remember remember the 5th of November. Nothing lasts forever even cold November rain.

Yep, it's November. And that scares me. Looking back at the last few years, my biggest crashes (including the onset) have all started in November. Why is that?

Cold season? Yeah, I have caught another cold.

Aftermath of Hallowe'en? Could be - we all know I go a little cuckoo for the holiday - but I was careful this year. Although even after all the care I took, even sitting on the floor by the candy so as not to have to get up or lean over too far, my house somehow ended up as the great reunion spot for my boy, his cousins and best friend, and the assorted parents and grandparents that followed them.

Bad Day? Yeah, kind of.

I can barely move today. Not sure where my fingers are getting the ability, but I don't feel it anywhere else. Getting out of bed was a monumental effort. My eyes do not want to stay open. But as usual, my head is full of activity, and some of it wants to come out and play, so here I am.

I think there are several factors contributing to this dip. One, a relatively busy week; two, stress; three, change, which leads right back to stress; four, yeah, I don't know - oh yeah! - the weather has been very gray and rainy (although surprisingly, the air pressure has been relatively steady).

So now you want to know about my busy week, the stress and changes, right?

Introducing the Hedgie Baby

Yesterday was, as you can imagine, a big day in our family. We went to a rescue center to pick up our not-so-gently-used hedgehog. She is a real sweetie, especially considering what she's been through.

The drive out there is pretty long, so because of that, and because he just loves them so much, my son asked my parents to drive us. Which was good, because I just knew the whole day would use up a load of marbles. The nice lady at the rescue showed us how to bathe her, clip her toenails, and so forth. She also sourced everything for us, which for a spoonie is a fantastic thing. We came home fully equipped!

So far, the only extra thing I need to get used to is the constant noise of the pattering feet on the wheel. Other than that, a bit of out-of-cage time every day, and we're good to go.

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.

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.

Backyard Camping

Three in a row - this must be a personal record. But there's so much I'm processing right now, and it is so helpful to blog about it.

Yesterday was tough. Physically, and emotionally, which comes back to the physical toll. My son took the news much much better than I could have imagined. Which means (I'm taking credit, yes, owning my strengths!) that I laid it out for him in a way that made sense to him, and gave him the time to process it. His initial reaction was "well, it's cancelled for you, but I can still go, right?" I was so super proud, because I had honestly been expecting a totally different reaction.

Because I was already so tired out, I really leaned on the other adults in my village to help me help him decide whether or not going on his own was a really good idea, and as it has turned out, he is now in the tent, in the backyard, sleeping with my Mom.

So tonight's post is all about gratitude, because that is what I need to express right now.

Cancellation

Bet you never thought you'd hear from me again so soon. Don't know if I've EVER posted two days in a row. But today was a really hard and significant day.

I woke up feeling like crap. I could barely move, and considered cancelling my therapy appointment, but something inside me knew I needed to go. So I did. And I spent practically the whole hour in tears. I had a heartwrenching decision to make that I didn't even realize I was considering making. The end result, I am not going camping this weekend.

The significance comes from my making this decision from a place of self-care, of self-awareness and of really weighing the costs. What's new about this is that I really am learning to balance my needs and my wants when they are out of whack. And in this case, they are majorly out of whack.

I am exhausted, emotionally and physically, and I know this was the right decision, but I am so very very sad. I feel like this illness has already taken so much from me, and why does it have to take even more? Days like this it is very difficult to remember what I have gained, what I have learned and how I have grown.

I know I will look back on this day as a turning point, as the moment when caring about the cost to my health was more important than the desire to follow through with plans, the fear of letting people down, and the grief of missing out on a seriously wonderful experience. But right now, I'm just sad and disappointed, and tired.

I am going to rest now, and hope that sleep comes to play tonight.

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.

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.

Busy Busy August

I've been quiet here all month, but not because nothing's going on. In fact, a lot has been going on. And I hit the point of needing to recover and I have, mostly, and still have a bit more compensating to do.
So let's play catch-up!

As I may or may not have written, my summer schedule organization was complex enough for me to feel the need to open separate google calendars for myself and my son. I have been coordinating his life between 5 households, including mine. Yep. Fun stuff. Especially on the foggy days. But it has all been going very smoothly, thanks in great part to my sister and brother-in-law who drove downtown in rush hour to camp and back for three weeks straight with all four of our kids in the van - not sure how they stayed sane.

The first weekend in August, we had the immense pleasure of hosting my aunt Cuq (who is familiar to all regular readers) and Ish (yes, it's a nickname). They were here for a very brief but so very warm and lovely visit. The best part was that most of the visit was just hanging out. I did, however, make it out to two dinners - two dinner in proper restaurants, with lots of people in one wekeend! That is definitely a record for me. The best part of being with Cuq and Ish is that there are no expectations - they know me and accept me and love me and accomodate me and protect me. They are family after all, so I don't feel weird about dropping off in the middle of a sentence, or just putting my head down in the middle of a conversation. That's pretty awesome.

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.

Medical Check-in

I've noticed that I'm writing a lot less lately, and mostly it's because I don't have much to say. I wonder if that means I am coming to terms with the way my life is going, or if maybe I've said so much already. Maybe it's a sign that my brain is settling down a bit, and I'm not having quite so many internal conversations that I need to get out so I can relax and rest. That would mean my anxiety levels are down, which is very true.

In any case, today I do have something to say, and it is all good news - at least for someone seeking answers and guidance. It always amuses me that those of us who have these mysterious health issues get so excited when our test results actually show something concretely negative. It's cause for celebration. We tend to feel the same way when we finally get a diagnosis, often after years of trying to get one. It is validating, and it is a relief to know that somebody has some sort of clue about what is going on in our bodies.

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.

Overly Sensitized Day

I am having a rough day today. And the last little while, I've been feeling rather resilient, so I'm hoping this does not last.

Last weekend was crazy busy for a healthy person, never mind me, and yet, I managed to get enough rest periods in there, and had a really good week, too. It was pretty productive, and restful and peaceful, and I felt really good, about what I did and didn't do. I made huge strides in terms of my sensitivity towards other people's feelings, and was able to tune into my own when I needed to. Very cool stuff. I spent the week in a very balanced way, and it was gooood.

It's even cooler, because there were emotionally critical situations both at school, in my online community, and in my support group this week. I managed to not take ownership of them, though, and keep focused on how to help others while still helping myself and not overextending. All the energy I previously would have directed to trying to fix it all and to keep anybody from feeling any pain was instead able to go into healing, which is exactly where I need it.

But yesterday, the weather in Toronto went crazy. It's as if it saved up all the rain that we did not get all through spring so far, and threw it all at us in one big huge stormy go. Traffic lights were out, there was quite a bit of flooding, and the roads were slippery and the wind was really strong.

So of course, I went for a nice loooong drive!

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.

Honouring our Teacher and Friend

A couple of weeks ago, my family lost somebody very special, as did everyone I knew in my childhood. I had not been able to bring myself to write about it, because I honestly had not been ready.

My parents met her somewhere around high school and university. She was one of the first Montessori teachers in Mexico, and she was my sister's first teacher. Olga created more than a school - she created a community, within which parents formed such strong bonds that time and space have not eroded.

Myself, I was in her school for only one year. But Olga's friendship with my parents influenced my life in ways I cannot describe, and cannot count. Her passion for Montessori was contagious, her will indomitable and her voice was strong. My parents had learned about Montessori through my uncle's first wife, and had received the seminal "The Absorbent Mind" when my mother was first pregnant with my sister. When it came time to look for schools, they explored their options, and realized that their friend Olga offered the one that best suited them, what they valued, and what they wanted for us daughters. And Olga became my sister's first, and probably most influential, teacher.

Tired Today

Today was the first day in a week that I woke up tired. I mean beyond the norm. The new norm. Do you know what I mean? I'm not sure I know what I mean.

Since November 2008, my sleep has been less than refreshing, overall. But within that, there is a huge variance, and I can usually tell what kind of day I'm going to have by how my body feels those first few moments of waking. The last couple of weeks, since I moved home, I have felt awake faster, and lighter. I was surprised the other day when I got up and without even thinking about it, just reached into a drawer to get dressed. I have gotten rather used to thinking about it - calculating how much energy I have, and what my day will bring, what the chances are that I will be back upstairs before I leave the house, and so forth. But I didn't have to do that this week. That's pretty awesome.

This morning, my wrists and ankles were heavy, and it took all the effort in the world to roll over, never mind get up. And I'm glad to say it was a surprise! And also, I'm absolutely sure I know why.

My Week in a Wheelchair

I am lucky. I can walk. Most of the time, and short distances, but in my daily living, I can take care of my own transportation. Sure, sometimes I need my cane, and other times I can make it just as far as the driveway, but I can use my legs just fine. I have been in a wheelchair a few times the last couple of years, usually when I want to go somewhere with my family that would require walking longer distances - like a museum, or to Harbourfront. I'm in it for an hour or two every few months. Nothing more. Like I said, I'm lucky.

But in San Francisco, I was in a wheelchair most of the time that I was not in the hotel. We stayed in Fisherman's Wharf, which is the very touristy part of the city, and very walkable. And so I got pushed around as we did our sightseeing, and when I joined my family for dinners out. It was a most interesting change of perspective in many ways.

Using a cane and being limited in so many ways, I am more aware than I used to be about accessibility and people's compassion (or lack thereof) and helpfulness. But it does not compare to seeing the world from a sitting position, and ceding control of my movement, speed, direction, and therefore experience, to whomever is doing the pushing. For the most part.

Trees of Life

I do not believe in coincidence as being a random convergence of events. I believe in co-incidence, as in a significant, yet unplanned convergence of events. There is no doubt in my mind that this is what happened this week, in my being in San Francisco with my aunt Cuq, while the Do Not Destroy: Trees, Art, and Jewish Thought exhibit was on at the Jewish Museum here.

I am drawn to trees. Always have been. I even have one drawn on me. Permanently.

Most spiritual paths have a connection to trees. In Judeo-Christian traditions, we have the Tree of Life and the Tree of Knowledge. Christianity espoused Pagan traditions by bringing trees into the home during the winter months. First Nations peoples have spoken to trees, and honoured their wisdom for longer than anyone knows. Druids, Wiccans, Pagans and all the nature-based paths have special connections to trees, and Buddha gained enlightenment under a tree. Trees are older than we are, and will be here hopefully long after we are gone.

I forgot about my brain!

It figures, that when I wrote about my doctor's visit, I forgot about the part related to my brain. Not exactly coincidental... right?

He mentioned that in Canada, we don't do SPECT scans for diagnostics, and he is right. The only brain image I had done was at the request of a neurologist I saw in my earliest stages of illness, and it was a normal MRI. Never done a SPECT scan, and probably never will. So I won't get to satisfy my personal curiosity about my own brain. Ah well.

But there is increasing research into how ME affects the brain, and it shows up in SPECT scans, which apparently measure blood flow, or something like that. What my new doctor said is pretty much that he suspects if they were to do such a scan on me, they would find abnormalities, which would make sense out of a lot of my neurological symptoms. Like the brain fog, the aphasia, the cognitive impairments, and the lack of stamina when it comes to concentration.

I like brain stuff, so I want to learn more about this. And I will. Just not now :)

In any case, as far as my treatment is concerned, there is no point in even thinking about my brain, because the adrenals are the first thing, along with the methylation (which is also brain-related) that have to be addressed. And we're already doing that, so what comes next will come.

Again, what's wonderful about this is the validation. There is a reason that my brain conks out after a little while, or when I try to multi-task. There is a reason why I suddenly can't think of the right word. There is a reason I forgot that he even mentioned my brain. And there is definitely a reason that I have trouble with too much sensory input. The doctor said so...  And much as I already knew so, it is really nice to be validated by someone with so much experience in the field.

A New Doc, A New Hope

Yes, the Star Wars reference is purposeful, and if you didn't get it, then you can't have a conversation with my nephew :)  ... and let that be an indication on my mindset, coming out of my first meeting with my new doctor, for which I have traveled real nice and far, to what feels like a galaxy far far away.

So first things first - I am not dealing with mold or other biotoxicity (Yay! I get to go home!!!!). While I already knew that my illness had a viral onset, it seems that it also has a viral cause. The question then becomes whether the initial virus has stayed in my system and keeps reactivating, or whether it just whacked things so out of balance that it has taken me this long to get over it. The doc says it honestly doesn't matter so much in terms of treatment, though he did test for the more likely suspects, and once those results are in, he will decide which course of action is best for me. In the meantime, the big things to balance out are my adrenals and thyroid.

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.

Guilt to Gratitude

I have worked hard for the last 15 years of my life or so to keep guilt at bay. But never has it been harder than these last few months.

Guilt is such a waste of energy. It is a turning inward of anger, frustration and helplessness. It is a self-involved lens that combines two very opposite seeming ideas: I am all-powerful, and I am no good. It implies that there was choice, effort or pre-determination that all worked towards a bad end. And it is all a mental construct - it is my thoughts about what I am feeling, which is really anger and sadness, along with the human drive to find explanations and causes for everything.

These last couple of months, with the mega-flare I've been experiencing, and my old classroom pretty much crashing and burning, and with all the ripple effects both of these situations have had, it has been very very hard not to look for cause and effect and find at the center of it all my illness. I have not said that I am ill in quite some time. I know now that I am safe to say so without falling into the trap of focussing on the negative. But there it is.

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.

Springing Forward

I'm not sure if it's the sleep I'm finally getting, the weather brightening up, the longer hours of daylight, the fresh air I can finally start getting again, or a wonderful combination of all of the above, but I am feeling moment of actual (relative, please understand, it's still relative), refreshment. Aah.

My mood has lifted, and that always changes everything. Once again, I have managed to steer clear of a full-blown depression, but the last few months, as you will know if you've been following the little I have written, have been rather difficult and dreary. It has taken much turtling (a few of us spoonies came up with this evocative comparison in conversation to describe when we make like turtles - see the turtle, feel the turtle, be the turtle - go slow, and hide in your shell if you have to), escapism, conversations, exploration of my psyche, and surrender to evade the darker moods, but I am happy now to be writing from the other side.

Mold update...

It's been a while again... I guess there has been so much going on, and getting the keyboard set up with the tablet somewhere comfortable is not as easy as I thought it would be...

But today, I was debating whether to take a shower or go for a walk (and as my Mom said, it sucks that it's actually a choice I have to make), and I decided instead, to put my afternoon's energy into this. And so I am sitting outside, blogging!

I brought out one of the little kiddie chairs, and an old (clean!) changing pad, and I'm sitting on the ground, and the tablet/keyboard are on the chair in front of me. Much less expenditure of energy than going up the stairs to my mom's computer, and I get fresh air to boot! Yeehaw!

Updates: mold, naturopath, California, sleep

So long since I've written, and in part because there is much and yet little going on.

There is little going on in terms of my physical and emotional condition; I am still fatigued, malaised, in discomfort etc etc. I am still struggling with sleep. I am still dealing with the emotional fallout of this long relapse, and the discovery of mold.

Yes, that's the big news - we had people come in, and found high levels of mold in my basement, my bedroom, my parents' basement, and to a lesser extent my living room and the bedroom in which I sleep at my parent's house. Joy oh joy. It's not like we already had enough to deal with. And I'm so glad I can say "we" instead of "I".

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.

Insomnia and my Overactive Brain

I was good last night. I really was. I stayed away from the screens. I played sudoku to calm my brain. I lit a candle, played quiet music and did some stretching and breathing. And I turned out the light, blew out the candle, and lay very very still. But my mind did not.

I tried relaxation techniques. I tried breathing. I tried shifting positions. I tried tuning out. I tried going with it. I tried letting go and letting be. And when I looked at my clock, at 4am, I thought, this is stupid, and got out my book. I finally went to sleep at 6am. I'm trying not to use the melatonin or other sleeping aids, because my Osteopath said to, and I trust her. But if this continues, I may just have to break out the pills again.

Today, I've had a couple of moments of peace - slow thoughts, moments of no-thought. But it doesn't take long at all for my brain to come crashing in again; I have to empty the dishwasher, I'd love to go out and buy a latte, too bad they out of tortilla chips, I should check my e-mails (cuz you know there are so many urgent ones waiting for me - not), expertise is overrated, Montessori changed the world, doctors suck, what if this thing in Cali doesn't work out, I wonder it there really is mold in here, blah blah blah blah, and it all happens so fast half the time I can't even identify what my thoughts really are. Except for when they become diatribes, arguments and essays in my head, which go on for-e-v-e-r (kind of like my longer musing posts, and thesis presentation). I know this is all a cover for something. It's a cover for fear.

California, here we go

I received the news yesterday morning, that my father finally got me an appointment to see Neil Nathan in California. This is the doctor that specializes in complex and mysterious illnesses and people who fall through the cracks in the medical systems of the world, and who was recommended to me by my Osteopath and approved by my Naturopath.


I am happy, and I am relieved to have the appointment, and I am nervous. Anticipatory nerves. That's what I've got. This is a risk I'm taking, and my parents are taking with me. The risk is physical, and it is monetary. The possible payback is the return of my health. Worth it? Hell yes.


So off we go.


In the meantime, there is little change around here. I am still feeling low, physically, but my spirits are slowly returning. I am making a concentrated effort to focus on the things that make me happy, and on the things that bring me peace. Everything else is taking a back seat.


I am cocooning.


I am trying to slow my thoughts down, and make my brain take a break. I am quite literally hermit-ing myself away, relishing the idea that my boy is in good hands until Monday, and that there are no worries or pressing issues other than me, healing, and finding peace within my situation. Pretty important work, I'd say.


Thank-you for your ongoing support and caring. It means more than I can express.

I'm still here

It's been longer than usual between posts, mostly because of two factors: I still feel really crappy, although my emotional outlook is improving; although I now have a tablet (thanks to my brother in law who had an extra that he kindly donated to the cause of preserving my sanity) that allows me to actually get online at my parents' house without dragging myself up the stairs and sitting up at a desk, typing on a tablet keyboard is un-fun enough to stop me from writing. So now that I am home for one night (avoiding the cleaning lady who is going to arrive at my parents' house nice and early in the morning), I find myself yearning to post. About something. Anything. So... hi! Welcome back!

My physical reality has not shifted much since I last wrote unfortunately. I am having some moments of better energy, and of lessening of symptoms, but for the most part, I'm still really struggling with daily life. So welcome to my little pity party: My right foot is dragging again, quite a lot. I think it's a neurological thing. I'm shuffling, and I walk about as fast as my grandmother (who is turning 92 tomorrow - no - today! Amazing, eh?!). I get very lightheaded when I stand up at anything more than a turtle's pace. My head is all spinny, and my appetite is up and down. Walking to and from the kitchen has my heart racing. Climbing the stairs is a real ordeal. Sitting up for dinner makes me want to lie down again, and most of the time I am lounging, reclining or lying down. And that's only part of it.

waxing, waning, waxing, waning

I am still feeling pretty crappy. My symptoms are present and strong, my energy levels are low, and my circadian rhythms are way off. I realized yesterday that I haven't driven in more than two weeks. And this, according to my naturopath, is par for the course. And that has me feeling rather down, on top of the down-ness that comes with feeling the way I do physically.

I am now into week 2 of living with my parents. I am having a very hard time emotionally speaking. It is so much easier to busy myself, and my mind with inanities than face the emotions that this setback is bringing forth. And I understand a little bit better the dejection, jadedness, anger and bitterness that so many people who have been sick for a long time feel. But thats not who or how I want to be. So I keep working at it, but its hard to maintain a positive attitude right now.

Mold? California? So confused...

I finally got in to see my osteopath regarding these colds that won't go away and she laid down a potential shocker. Turns out, this could be mold masquerading as a cold. Oh joy.

I know nothing about mold, beyond that it's harmful, can cause all kinds of yucky reactions in humans, and is ridiculously hard to get rid of. I really really hope that I will not have to learn more about it than that. I will find out whether that is necessary after checking my and my parent's houses. Sigh. Really, none of us are up to dealing with this right now. But you do what you have to do.

In the meantime, a great many very interesting things came out of our session, and I am finding myself at yet another moment of decision making - crossroads like. This whole healing thing would be so much easier if there were just one expert who would tell me what to do and how to do it. But Nooooooo. Not only is this particular condition so mysterious and complicated that nobody yet understands what it is, or even if it is one single thing, rather than a bunch of different yet similarly presenting illnesses all being lumped under one name. So there is no one book to read, no one path to follow.

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.

Seriousy? Another Cold?

I thought I was done with that! Surprise surprise, just after I wrote the last post about finally starting to recover, I get hit again. Same thing. General increase in symptom severity, general decrease in energy and predictability thereof, yada yada yada. Oh joy.

Today I used my cane, for the first time in a few months. That's how I'm doing.


I know there are people out there a lot worse off than me. I know how fortunate I am to even be able to pull myself out of bed, never mind actually climb the stairs in my house. As a good friend keeps reminding me, "any day above ground is a good day." I know that this does not define me. I know that this is another bump in the road, and certainly not the first or worst bump I've traveled over.

But it sill sucks, and I am finding myself once again going through the stages of grief, albeit mildly.

I don't think I have anything else to say about this right now. Just yuck, yuckers and yech. And I really really hope this is a light one, that will pass as quickly or more quickly than the last one, and not one of those that my naturopath was saying have the potential to knock me out for a couple of months.


Hot toddy, here I come.

Recovering from the Common Cold

Yes, I'm still whining about the cold I got last month. It lasted for about 3 weeks. And now I'm finally starting to really recover.

When I went to see my Naturopath today, she told me that when any of her ME patients get a virus, she secretly worries. It is not at all uncommon for a regular, run of the mill cold to knock us back down a few levels on the functional capacity scale. Quite normal for us, actually, to take months to recover from a cold. Um. YIKES!

Sooooo.... today I'm counting my blessings. The cold lasted for 3 weeks, but I'm really recovering. Yay! No more whining about that from me! Amazing, the perspective the shift. Suddenly I'm feeling fortunate.

there is sickness here but I am not sick

I've been in a bit of a funk for the last few days. I have had moments of tremendous enjoyment, especially the moments I spend with my boy, who is back home, happy, healthy and very much himself. But I also find that I've been irritated more easily, feeling lost, and plenty shut-down. My symptoms, especially the ones related to my central nervous system are exacerbated right now, and I still can't quite seem to kick this cold.

This morning, when my boy got up bright and early to get ready for his winter break camp, and asked me to join him in watching TV, I did, but I curled up on the couch, and tucked my head in as far into my shoulder as I could, just to share the space with him without going crazy with the sensory stimulation, hot/cold feelings, and general heaviness of my body. I spent the rest of the morning catching up on Facebook and realizing just how awful my body was feeling. It still is. Writing is hard right now, but I think it will help.

In a moment of clarity, I decided to turn off the computer after lunch and started instead to read "How to Be Sick" the bible of many chronically ill people by Toni Bernhard. It helped. She also has ME. She also doesn't know what that means, 10 years into being house-bound. To be honest, I am hoping not to be as house-bound as I am for another 10 years. But if that is what happens, I guess I will deal with it in much the same way as I've dealt with it thus far.