Tuesday, August 24, 2010

The circus comes to town

In between now and my last post, the EDS circus came to town. It's been nothing short of crazy but hey, at least it hasn't been boring and monotonous.

I spent from Friday until Sunday in bed. The weather was rainy and gross in addition to my hormones going crazy (I'm sure you wanted to know) which left me feeling like chewed gum. The big-invisible jaws were gnawing on me the entire time. Woot! Sunday the Toronto and area Bendy Posse had planned a day to spend on the island. Yes, Toronto has an island, it's a giant park and nothing short of awesome. We had planned to spend the perfect day there but it was a swamp from all the rain and it was still raining. We ended up going out for lunch instead. mmmmmm

On the way there I broke the wheels. Yes, you read it right...I broke my wheelchair. I was going across a cross walk, on the other side was a raised curb. My bendy friend who came with me, helped me maneuver alongside the traffic (because the light had changed) and up a sloped curb we eventually found. In those moments of craziness, my front wheel broke. The plastic "spoke" bit snapped, and the wheel itself came loose constantly collapsing on itself. I've been calling around the City of Toronto to find someone who will help me get it fixed and pay for the repairs.

My room mate has also informed me that I have been sleep walking. WTF?! When I think I'm sleeping through the night (on those rare occasions) I've been walking around my room talking and laughing. I make my way to the washroom, then the kitchen to turn on the taps. There really isn't a need to for me to be up, and I keep a liter of water beside my bed. She says I do it all in the dark. One of my biggest questions, is how do I manage to do all that and not hurt myself? On a regular day I'm a proprioceptive mess.

I know that trying to get back to school, dealing with all that EDS has to offer and turning to mush hasn't been particularly nice to me emotionally, but I didn't think it messed me up in the head that much. I think it may be that during the day, when I'm at work, or out and about I'm distracted. It's the time before work (mid-morning) and when I'm going to sleep is when it all catches up to me. Those times are usually spent at appointments, filling out paperwork and fighting with doctors and for funding. The majority of those result in "defeat" or rather another obstacle and more red tape. My favourite things. For the most part, I can pull it together and be on my way to work. I turn off that part of my brain, and let go of the anger, frustration, sadness and fear.

I get to work, and loose myself in a world that is filled with play, art, teaching and magic. This week included getting an ass-kicking in public, with curious by-standers. Quote of the day "He's fine, just a tantrum." I'm surprised no one called the police. Even with that, I love my job. There were a few times at work this week that were a cruel reminder of what I've lost. One of the kiddo's asked why we weren't going paddling and to the climbing gym this year. Last year, I took him paddling and he had a ball. We went climbing every week, where we worked on co-ordination and motor planning while pretending to be Spider-Man. Kiddo used to live for the climbing gym, he loved it and has made incredible gains from it. Going to the beach is awesome, but I'm not the only one who misses experiencing the world from the water and off a wall.

Just before bed, I spend a couple of hours winding down and trying to make peace with the negativity that likes to creep in. Sometimes I can make it work, but it is rare. Most of the time I end up crashing with thoughts of all the negative things that have been thrown at me that day, or things that have been eating away at me. One of the things that people are often asking, is if my plan "C" will work, and what I'd do if it didn't work. I'm given reasons of why it can't work, what I should be doing instead because it's the "safer" choice and that I shouldn't be risking anything. I've also been thinking about weather or not I want to have kids anymore. Adoption has always been in the plans, but now I'm not sure I even want to do that. There is nothing more that I'd love to do than to be a mum. I've always wanted to travel the world with my kids, and let them experience all the enriching things the world has to offer. I can't do that when I'm stuck in bed,need a wheelchair or am just plain exhausted. It's possible for lots of people who have EDS to raise kids but I don't want to if I can't be the mum that I want to be.

I sometimes wonder when these hellish days that seem endless will finally be over, and if things will ever start turning around. That's usually when I stop caring about everything all together, and that's not cool. Life is much easier when you've got goals, drive and passion. When those things are gone, even temporarily, it becomes much more difficult to make it through the day. Slapping on a smile, and going through the motions works but I never get anything out of it, numbness is sometimes the only constant.

This weekend, I was involved in a study on EDS and proprioceptive awareness. The cool thing about it is, one of my bendy friend's girl-friend is running the study for her thesis. It was nice going into a lab, and having the person running the tests know what living with EDS is like. She was more than prepared to give us breaks to lay down or stop when sitting and doing the tasks became painful. I didn't have to explain any of it, she was the one who put it out there and that was awesome.

I've learned to look past all of the "milestones" people my age generally "achieve". I know it's unrealistic to have the same expectations for myself and quite frankly, I'm not ready to slow down and start being a "grown-up". I don't want anything close to a mortgage, or to be tied down at a job where I can't just get up and leave. For that, I am happy. Even with all the craziness and uncertainty there are major benefits. I'm trying to look at regression and loosing everything as opportunities to try new things and experience the world through a new set of eyes.

I'll finish this never ending post with something positive. After I had the disaster of a root canal done in November, I lost the ability to clench my teeth and fully close my mouth. That resulted in a bunch of TMJ issues and all the fun that accompanies a joint that is very unstable. I woke up on Friday morning and my jaw was really tight. No surprise, that was normal. The more conscious I became, I realized that I had been grinding my teeth and I could clench my teeth. Hopefully eating will become a little easier and I'll continue with that up-swing. The chiropractor has been doing Active Release treatments on my jaw for a while. It can hurt like a mother, and is totally worth it. It took ten months, but I made PROGRESS. Such a beautiful word.

"Invariably, a sudden disappointment, a bit of "bad" news, or a flock of butterflies gathering in your stomach, are all omens that a fabulous adventure is fast approaching."

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