Still Yearning

7 months now, I've been home, sick, unable to function at a normal level.

I still have to rest after unloading the dishwasher, showering, or taking a walk. I am up to about 6 hours of "real" activity a day, and 6 hours of low level activity.

I am starting to wonder if the yearning ever goes away. 7 months, and I still want to do things I can't yet do. 7 months, and I still yearn for my former self.

I want to play in the pool. I want to run. I want to take a bike ride with my son. I still can't. I still need help, and support, and I still need to rest a good portion of the time. I want so badly to be active, and I have to hold myself back.


I'm learning to accept these things as part of my reality - I'm learning to accept that this is a long-term thing. I'm learning so much, and yet I still want it to be over. I can say yes to the yearning, yes to the need to rest, yes to feeling secure in what I need to do, yes to many things. But saying yes doesn't make it go away any faster. Well, maybe it does, because saying no just makes me push harder, and take on more stress. Funny, but saying yes to anxiety - accepting that it is part and parcel of this illness - actually creates a peaceful place for the anxiety to wear itself out. I know that it is not a real part of me.

I am saying to no to a lot - I am saying no to biking, swimming and running. I am saying no to overly loud situations, and no to things that stress me out. That's getting easier. I'm more secure about my needs.

But it's not easier to be less independent, and it's not easier to ask for help. I know the help is there, whether I ask for it or not. What I really want is to be able to go to Canadian Tire, and on the way back, stop off to buy some vitamins, drop some books off at the library, and then go hang out at the pool. It's not getting easier to say no to that.

I really do wonder at what point I will be able to manage that more easily.

So Far Away - for my Cincy colleagues

* for background on this post, see No Cincy for Me This Summer

Tonight there was a message on my cell phone. I cried. I'm not there, and it hurts. Right now, at this moment, there is nowhere else I'd rather be than at the dorm rooms with these super special people who made my life so much richer. Carole King said it so well.

So far away; Doesn't anybody stay in one place any more?
It would be so fine to see your face at my door;
Doesn't help to know you're just time away;
Long ago I reached for you and there you stood;
Holding you again could only do me good;
How I wish I could, but you're so far away

One more song about movin' along the highway;
Can't say much of anything that's new;
If I could only work this life out my way;
I'd rather spend it bein' close to you;

When I left Toronto at this time last year, I was afraid of who I would be stuck with for 6 weeks - you see, I've never had much fortune with large groups of people - jealousy and insecurity are far too common ailments, and ones for which I don't have much patience. But there you were. Big smiles. Corny jokes. Open, and excited, and dedicated to the same things I hold dear. Willing to learn and teach from your experience, patient with my pontifications, generous with your time and minds, and so very much connected.

My Cincy friends, through you I learned to open up again after many years of carefully shielding myself for logical personal and political reasons. I re-learned to engage fully with my goals and the people around me. You showed me caring and affection. Through your words and your actions you showed me how you valued me, and you made it feel good to be me. I like myself when I'm with you - I think being with you at that moment really made me a better person. My time with you was a short-lived haven - a respite from the pressures and banality of a complicated life. It was indeed a cocoon, one which was preparing me for challenges I never could have expected.

Sumertime! Wait - What?

Summer's here!!! This week is the first week without school. The pool in the complex is open, and it is supposed to be pretty nice most of the week. Next weekend, we are going camping - its an annual trip with old old friends. We've been going since he was 3.

On the one hand - Yay! On the other - ohmigod, ohmigod, ohmigod.

I love summer. I love spending summer with my son. I love hanging at the pool, and I love being in the pool with him. I love our camping trips, the tents, the fire, the lake...

But this year I will have to not canoe. I don't even know if I can get on a canoe without vertigo, or even get in the water - last time I took a bath I felt sea-sick. I'm also having a really hard time with direct sunlight. It's very strange to me to seek shade, because my entire life I have enjoyed nothing more than the gentle warmth of sunshine on my skin, and now I find it drains me.

I'm also starting to stress about how I'm going to get everything packed and organized without burning through all my marbles so I can still enjoy the trip instead of passing out the minute I get there. Luckily the friends we go with are awesome and incredibly understanding - I think that's one of the benefits of having known someone longer than you haven't known them. Last year, they drove me home and did all the heavy lifting on the way back, including unpacking my car, because thanks to an awkward fall I ended up on crutches. This year, I've made them as aware as I can about my condition, and we've made some arrangements that will help. Once again, I raise my glass to good friends!

Goal # 2 - Do I Really Want to Challenge Time and Flow?

My goal for this week is to make TO DO, and NOT TO DO lists every morning. The idea is to give my mind relief from thinking about what to do, and about the things that need to get done, but won't get done today.

Then, the task will be to plot this into my activity logs, and make sure that I am following my body's natural rhythms, scheduling in activities at the time of day when I am most energetic. Pretty cool. I like this idea. Except I am still very resistant to schedules, and for good reason.   :) 

Here's where I had trouble yesterday: I originally plotted in writing yesterday's blog entry at 5:30, and visiting the forums at 3. But at 3, I didn't feel like it. At 3:30, though, I had just rested, and the words were clambering at my skull to let them out. So I wrote yesterday's entry. I did visit the forums, later in the evening, because that was when I felt the need to reach out to people.

This all got me thinking about the idea of fractal time, flow and Montessori - now, I have to say, I know next to nothing about creating or making sense of mathematical sets, or how physicists actually use them. But I know plenty about what it means to the social sciences, and how it relates to education and cognition, and to my own personal psychology - it's all about the experience of time being fractal rather than linear.

Marbles Well Spent - School Show

Last night was the first time I went to a school show without knowing exactly what was going to happen onstage. It was also the first time my son really participated in a way that he felt was significant, and that he was really engaged in the process and looking forward to the performance. And, it was also the first time my mother participated.

The show was about dreams - lucid collective dreams to be more exact - and was mostly written by the students themselves. The songs that accompanied and transitioned the scenes were also written by the students. Thepride and confidence they felt at having done all this was palpable. They were poised, and enthusiastic, and just so very incredibly wonderfully amazing, that it was hard work to keep the tears from my eyes.

My marbles are all gone, but it was so worth it. Today has been pretty useless, but again, so worth it. The whole night was totally worth the price I'm paying today.

We started by taking my son out for dinner - my mom, him and me - at a greasy spoon between the house and the school. As soon as dinner was over, he ran off to fetch me his report card, and we sat in the car reading it together. One of the things I love about Montessori is how well the teachers get to know the students. You have to understand that in Montessori there are no grades, and the reports from our school at this stage are literally four pages of the teachers describing the overall development and the activities covered in each area of the classroom, and each specialty subject. Reading out loud the details of his daily life, I could feel the teachers' passion for their work, and their dedication to my son's education. The way they describe him is just how I see him, and just what I hoped for in his life at this stage.

Got a Goal!

*this post is a follow up to "Choosing a Goal"

TARGET for last week:

What: Limit one activity by setting the alarm on my phone.

How much: 30 minutes

When: in the afternoon

How often: Every day

Confidence level: 9

I finally settled on this goal, because I think if I put a limit on my over-doing, I can really go a long way in spending my energy in better ways.  I decided to do it every day, because I will forget what day I chose (assuming I can even remember what day it is), and everything will become a huge mess - such is the brain fog. Sigh.

My goal, and its ramifications made for a hearty and fascinating discussion with my therapist today. She was very interested in why I was overdoing in the first place, and how this is challenging my deepest-rooted behaviours, and, most interestingly (I hadn't noticed until we started talking), how it relates to Montessori philosophy.

Now, I know it's a small task I've set for myself, but this is a paradigm shift in my life, and the whole point of setting this goal is to be able to achieve it. Hooray for baby steps!!!  I'm a big fan of baby steps. Also a big fan of diving in the deep end when the time is right. But, in trying to effect a serious, deep and permanent change, early success is key. I know myself well enough to know that if I don't succeed with this first goal, I will likely never take this seriously, and won't give it a full effort if I even try it again.

Martinis - a Family Event

My son has a new obsession: martinis.

Since he was born, he has watched my dad make them, shake them, and enjoy them. When he was about 18 months, he insisted he wanted one. Being the Montessorians that we are, we honoured his desire to be a part of the family, and gave him, in his own little cup, water with a grape in it. Well, that was the biggest thrill.

It has been a while since we had the pleasure of sharing these lovely drinks, and we had all, I thought, put it out of our minds. Out of the blue the other day, he declared that he wants to help my Dad make martinis, and that his will be made of sprite! Ok, it was adorable. What a great way of sneaking pop onto the dinner table.

My Dad agreed, and the next day, it was such a treat. First, Dad makes a seriously mean martini. Second, the "conviviencia" (literally translated as co-living?!?) - the sharing of the experience of these two was amazingly beautiful. So much so that I wanted to share it here.

Choosing a Goal

I started the self-management course last week. But really, it's starting this week. Last week all we did was introduce ourselves. Nothing really all that exciting, interesting or new. Ok, technically, I read 12 new stories. But really, they're all far too similar to mine to feel new.

This week, though, it starts to get interesting. Our readings were about what we're already doing to manage our symptoms, and on how to set an attainable weekly goal. The readings on managing were again nothing new, but very valid. The reading on goal setting, through, that was interesting.

They explain a way of breaking down aspirations into small, manageable pieces that are easy to track. The example they give is this: What you really want overall is more rest. Great. Say that, and see how it goes! Ok, so break it down. The goal is to rest for 30 minutes twice a day every day. And the next part is where it gets really interesting: how confident, from 1 - 10, are you that you can actually do that. Less than 8? Then you're setting your sites too high, and need to adapt your goal. Rest 15 minutes twice a day, or rest once for 30 minutes, or rest twice for 30 minutes two days. Or however you can reimagine it to suit your life. Now are you confident? No? Ok, check out surrounding circumstances. Is there another way of doing it? Is something interfering? Can you change it?  And so on until you are very confident that you can achieve your goal. Next step, write it down, because if you write it down you're more likely to do it, and then tell as many people as you want, because again, that makes you more likely to do it. Track you progress through the week, then finally, write down what you learned through the process.

Rain

Today was grey here. It was dark - at noon, it was darker than it's been at 8:30pm lately.

And then the sky opened up. The rain came down hard and fast. It didn't last long at all, but long enough to nourish the plants, and to make me want something else. What that something else is, I don't know.

I was out there for a few minutes, before it really hit. I've been so desperate to get a little bit of weeding done, so I decided to just go and do it for two minutes. But... I've found a decent compromise - Instead of pulling weeds, I pick the flowers. Less intensive, and less effective, but at least that way they can't spread and ruin the work of the last two summers (Ha! Take that you weedy weeds that are trying to kill my roses!), and on the plus side, I get nice fresh flowers in the house - they really are pretty.

And then the rain came. Hard. I jumped inside - good thing my yard is small - and managed to not get soaked. But I wanted to be out there. It brought back so many memories.

Up Past My Bedtime

It's 1am. I'm not asleep. I'm not even in bed.

I thought I was getting so good at this!

Truth is, lately, I've been having a way harder time disconnecting, and I have no clue what that's about. I can postulate, and guess, and pull something out of the air, but I don't really know why. I guess I will have to bring up at my next therapy session and see what comes up.

But here's my best guess: It's a combination of better energy levels, the time of year, and changing routines. I bet there's something else going on in my subconscious, but who knows.

I'm starting to feel more energetic. Not a lot, but a little. I'm reaching for that functional capacity of 6 on some days. And that makes it harder to not do stuff. It's easier to convince myself to rest when I can't move. My body forces it on me. There's no argument. But lately, I've been in such a good mood, and my son has been amazing, that there's no external signal to stop until it's too late - I've been getting so engrossed in things that I'm forgetting to read my body.

Life Won't Wait - the new Ozzy

I was going to write about something else, but then I heard this new Ozzy song on the radio, and I can't get it out of my head...

Stay strong,
Stay true,
Be brave,
It all comes down to you


Now, I enjoy Ozzy, and listened to some Black Sabbath in my youth, but I don't remember him ever being quite this deep, except when writing about hopelessness and pain. I'm not a follower (didn't even know he had a new album), so what I know of him what shows up in the most mainstream of media - the image of him biting the heads off doves, screaming at Sharon, or playing with his dogs. I know how reality TV is scripted through post production work, so I know the Ozzy we saw in the show wasn't really him, but he was shown as such a messed up, washed up, useless kind of guy whose brain was literally fried, that this song really threw me for a loop. I just frikkin love what he is saying here!

Living in Paradox

I love with my mind
thinking with my heart
I fly when I'm lying down
I'm heavy in flight
lonely in the midst of encounters
entwined with strangers
anonymous confidantes
misunderstood and fully comprehended
wise without knowledge
full of insight and filled with folly
finding meaning in the superficial
depth in the commercial
light in the darkness and darkness in the light
freedom is in the structure that brings release
never seeing what I know
grasping beliefs
the unthought is paramount
my thoughts are unknowable
the unfelt wearing down
demanding to be known
there is
I am
it is
I am

Naturopathic Hope

Today my parents took me to visit my naturopath. She is far more versed in this illness than my GP, which means she has more answers and more resources. It also means that I feel more hopeful when I leave her office, because she is better able to explain the protocols she is using, even though I love my GP and deeply respect her as a doctor and a person.

Here is why I like the naturopath:
She listens.
Her research is very up to date.
She knows who's doing what, and which doctors are doing the most important work.
She believes in focused supplementing, rather than throwing everything at me at once.
She gets it.
She talks to me in ways that I understand, and is totally straight with us.
She is willing to answer every question we can throw at her.

Here's where we're at: it seems that the big focus right now is on the gut. While many of the body's systems are indeed affected, the gut is where the big issue seems to be. It seems that there is a tremendous overgrowth of bacteria in my small intestine which is producing some kind of gas (she did name it, and I promptly forgot the name) which causes the general malaise and - get this - the brain fog. Yes, the brain fog is actually being caused by these little buggers in my gut.