Monthly Archives: April 2015

On Getting Out of Jail

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So, I alluded to a bad thing that might happen, and it did.

I spent about two days panicking and then, all of a sudden, I realized it actually didn’t matter at all. I’ve made my choices based on what’s best for my health and well-being, and it doesn’t matter what happens, those choices are solid. Now, less than a week later, I am hardly thinking about it at all, which is a place I once thought I’d never get. I’m okay, I have a plan, I’ve got this.

Which is good, because as much as this other situation might want to hijack my life, I’ve got some pretty big fish to fry of my own. Mainly, my hands. At least twice a month I am in enough pain to lose my composure and seriously contemplate more than just my daily almost-a-bottle-of-wine pain management routine. The same problems remain, though:

My PCP is a nurse practicioner in WAY over his head, and we had several medication fumbles last year such that we both know we need someone with more expertise.

I live where Medicine Comes To Die.

I have, literally, no options in my place of residence.

The Shrink is retiring in September.

Once again, I’ve set up the summer as a time to fix problems so that I can go back to work. Instead, what it needs to be is that I need to try to solve some problems, not for work, but for me and my life. The answers are no more forthcoming, though.

The bottom line being, my hands are my life, and they have begun to hurt all the time, and that is just way more threatening and deserving of my attention than just about anything else.

Jumbled Thoughts and a Jeep

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Endless analysis isn’t healthy, yet my brain loops happily long after it’s productive.

My spouse wants to buy a WWII-era Willys Jeep. I am angry about the Jeep. I could spend hours trying to figure out why. But I would still be angry.

So, I’m angry. I feel like I’ve been set up to be the person who is no fun. I feel jealous. I feel left behind. I feel set aside, unnoticed, left out. I feel afraid.

Afraid of a Jeep? Yes, apparently I am. I have listened to things like “stiff suspension” and “bouncing around the goat trails” and “fun” and I know those first two mean that the last isn’t happening for me. It is something he will do without me; and not because I don’t want to (which is the position I am outwardly holding) but because I don’t think I can, which is the part where I feel like crying instead of feeling angry and hateful.

I feel left behind. The next thought that seems to follow that is that I feel that way about our upcoming visit to see his parents in Chicago (the Chicago suburbs, I add, hastily, having learned there is a VAST difference—learned because “my parents live in Chicago and have a pool” conjured an entirely different scene than “they live in a suburb in a smelly house with a crappy above ground pool full of goose shit.”). We stay with his brother, who has stairs. I am deeply worried about the stairs, and also feeling exposed and vulnerable and on my own–which is how those visits ALWAYS feel to me, and that was before I was so affected by EDS.

That’s it, really. I feel alone, and like I am being left behind, and like I am not worth the trouble. I cannot sit in one position on the couch for very long without something starting to hurt; I won’t do well being bounced around in a Jeep. It’s like when we talk about how much we think the child would like snowboarding and I wonder what would I be doing? Sitting alone in a hotel room?

Before my Grama died my mother and I took her to California for a niece’s wedding. We went out shopping and Grama said she would be perfectly happy sitting in her hotel room while we did that and I still feel like crying when I think about that and how much I don’t want to be left behind. I don’t want to miss out. I don’t want to be excluded, or cast as no fun, or the problem.

The Jeep makes me feel like I am. The stairs make me feel like I am. Right now, my spouse makes me feel alone. Not out of spite, but out of not being in my shoes.

They say that ultimately, we are all alone.Pity it makes us so uncomfortable.

Oh, Yes, *More* Would Be Lovely

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I’m sick. At the almost worst possible time to be sick, I am felled with snot, buzzing nose, ringing ears, cough and fever. I have from now (almost 11:00 am on Friday) until Sunday at about 5:00 pm to get vastly better in time for the first dress rehearsal of 12th Night. I went in today ONLY because I had a student who said she would be in at 9:00 am to work on her build for this show, and my coworker wasn’t going to be in until 11:00. You know how it is, when you are sick, and every step is measured and harder and exhausting? Get up, take a shower, put on the makeup, get dressed, get in the car, go to work. Then, said student didn’t waltz in until just after 10:00 am, when my coworker (knowing I was sick) arrived early. So, there was no reason for me to go in at all. Twenty-year olds and their self-centeredness, I swear. I was offered no apology, either.

So I have dragged myself home. Having EDS and chronic pain and all the related things makes it that much harder to tolerate anything else going wrong. Of course people get sick, but my reserve for such events feels dangerously low already. Something alarming is threatened in my personal life as well, which has taken the stress level to Defcon 11 plus infinity. The personal life thing will likely resolve and go the way of many similar flare ups that seemed really huge and then died out, but again, how much reserve do I have? Daily chronic pain chips away at my reserves until I cannot afford to think anything beyond, “What do I need to do NOW to feel better?” And so, in the face of a bad cold or something that might happen in the future, I have to rededicate myself to just the Now.

Right Now, the possible bad thing hasn’t happened.

Right Now, I do not have to go to dress rehearsal.

Right Now, I am caught up at work.

Right Now, I am hungry and need lunch.

That’s it. Pretty simple. The hardest things are always the simplest.

Should vs. Is

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How something “should” be contrasts wildly with how it “is.”

This is a central struggle in terms of acceptance and also action. I have to accept how things are, which means I must let go of how I think they should be. Also, though–until I accept how things are, I can’t take action to potentially make things more the way I would like for them to be. My path right now is to seek the middle; the narrow tight rope where I can balance between the extremes; in this case, the extremes of Should and Is/Are.

The Should:

should be able to come home from work, change into comfortable clothes, and then work in my studio for a few hours. I should be able to make at least a little bit of progress on my own work each day, even if I went to my day job that day. The reality, the is/are is that I come home from work, sit exhausted at my computer for up to an hour, then make dinner, start drinking wine, and go to bed in pain and worn out.

I really want the Should. That is what I feel I deserve and what I feel I want and what I feel I must have. I. Must. Have. As long as I cling to that, as long as I draw a line in the sand and tearfully, furiously demand it, the current Is/Are is where I will remain trapped. As long as I am trapped in the Is/Are, the angrier I will be that I can’t have the Should. 

It seems so easy, right? Ease up on the Should. Don’t let it go and free fall into the current Is/Are, but stop being so rigid about it. Explore the myriad of (stupid, not what I want, irritating, lesser) options that exist given the facts.

Fact: I get home from work progressively more exhausted as the week wears on. So, if the rest of the weekdays were playing cards, I can turn the Thursday card face down right now–there is no way I will have the energy to work creatively on Thursday. Often, I don’t have the energy to so much as fix more of a dinner than something frozen I can put in the oven and collect when the timer instructs me to do so. Thursday’s child with EDS, then, is not going to sew or draw.

Looking at Monday, though, there is a chance that most or much or often I *will* have the energy to spend a little time on my own projects. Monday, then, needs to be protected. I don’t have to leave as early for work because I see the Shrink at 9:00 am, and my last class is done at 3:20. If there’s going to be a chance for me to have some creative me-time, then on Sunday I should be making a dinner (or prepping food for the crock pot, or enlisting another household member’s help to prep) that will become leftovers for Monday  so that my shot at that time isn’t eaten up by the task of meal preparation.

See? That edges me back onto the tightrope again, balancing a little less precariously.

There will be Mondays when I had to work late and I can’t come home to create. There will be Mondays when I don’t feel good even though I had a shorter day and fixed dinner ahead of time. But at least SOME Mondays will be days where I can find the time to take care of my creative needs.

Tuesday shows that potential by maybe 20% less than Monday–but there is still a sliver of hope. That means that instead of dinner Monday being leftovers from Sunday, it should be a crock pot recipe that also covers Tuesday. IF I get an hour of time in my studio on Monday, that means Tuesday may only find a half hour; but the possibility is still there.

Wednesday I teach until nearly 5:00. There definitely won’t be any leftovers. Ideally, then, I would fix a dinner on Wednesday that is both easy and plentiful, to last into Thursday when I am completely fried.

Things I will have to limit:

On Monday, no booze until bedtime. Limited computer

Tuesday, the same, but maybe a bit more computer.

Wednesday–some computer, hot bath, booze.

Thursday: Whatever it takes to get through. Bath, booze, early bedtime, minimal dinner.

Even knowing that accepting certain realities will allow me to get closer to including things I want in my life, I feel resistant, which is the pull of the Should. I resent having to plan my life like this, losing some spontaneity in terms of when I will choose to work creatively, having to plan around pain and exhaustion. Yet, I can resent, dislike, rail against, resist what Is/Are all I want and I will change nothing and lose precious energy doing so. In writing, it seems a very small step to do what I have listed above, but emotionally it feels more like leaping a canyon. Except, if I look hard enough, there is probably a bridge that will allow me to cross the canyon one step at a time. That’s going to be the only way to the other side.