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.

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.

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.

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.

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.

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.

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.

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.

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.