Tag Archives: Daily GRIND

Circular Logic of Tail Chasing

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At some point, perhaps, I will learn. I will finally, for the last time, put myself and my finances through the process of having something investigated only to emerge from that process poorer, more frustrated, and with the answer I already had: I have Ehler’s Danlos Syndrome, and I will never feel “good” again in my life.

I spent $139.00 clams to get the MRI of my shoulder last week. That’s a nice pair of boots, or almost halfway to a pair of BedStu boots. (I KNOW RIGHT?) I had to go in to work late, and the tech was running late, and someone else there wanted to talk to me about my stalker sibling’s made up medical problems (because they are WAY more interesting than real problems). The tech assured me the doctor’s office would have the results the next day.

The short version of how obtaining the results went can be summed up thusly: PCP’s office decided not to answer their phones all day the next day, PCP was out of town, I got the results Friday via a text of the report he got faxed to him. There was a lot of anger, frustration, tears and cursing during this process.

The results? AC arthrosis, which is the same as arthritis except the word arthritis indicates inflammatory change and arthrosis is degenerative change without an inflammatory process. Just in case you wanted to know that. Here are other fun facts about this:

  1. PCP doesn’t think this explains the pain.
  2. I think it might.
  3. There’s nothing, not a goddamned thing, to be done about it.
  4. PCP wants to now go through the whole process again, but with my neck.
  5. But there’d be nothing to be done about it.
  6. And it would cost me the other half of those boots up there.

When will I learn? This time? This is how it is always going to work:

  1. Something hurts.
  2. It hurts all the goddamned time.
  3. I have to modify my life.
  4. IT DOESN’T MATTER IN THE SLIGHTEST THAT WE FIND OUT EXACTLY WHY.
  5. The answer is always this: I have EDS, and I will never feel good again. The end.

Oh my, yes, that is a negative outlook, I agree. But it’s also true. The other thing is, why do I feel like it’s more legit if I know the exact why? Part of me was wanting a torn rotator cuff even though that would be career-ending. OH. That’s why–I am looking for what I feel will be a legit enough reason to leave my job. Thing is, I already have a legit reason, because I have EDS, but I want an iron-clad out, not a soft, hard-to-explain, I-don’t-look-sick reason. I want something that is so clear that I don’t even have to admit to myself that I might be leaving simply because I work with one of the most impossible people in the world and I am starting to give up on the idea that I can win,and also, I am tired of this person taking so much of my energy when right now, I have trouble carrying my own belongings into work each day.

I can hardly carry my own shit, and once I manage to get inside with it all and put it down, I spend the rest of my day with a micro-managing tyrant with the tact and professionalism of an angry rhinoceros. I expend HUGE amounts of energy trying to buffer this person, in whose hands my leash was placed (after FIVE YEARS of working to get it out of their grip) by the new Department Chair, who has no idea what sort of monster he created. The rest of us do, because we all admired how hard it was to get myself off the leash in the first place and that the monster had finally been shrunk down just a bit.

We talked a lot, the spouse and I, about whether or not I can or should keep working. Let’s face it; this person is not worth what I am spending on them, and, despite the money and time and Dr Googling, my shoulder still hurts. And it’s not going to get better, any more than my hands, or my back, or my neck, or my ankles, or my wrists. Will I choose to remain trapped in the rough waters of this medical system? Or will I decide to liberate myself from it, from angry rhinos, and from feeling like I should hang on just a little longer? I don’t know yet, but the trend is going in the Give Up direction.

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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.

Mid-Week Breakdown

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Sunday: Faced with more foolishness on the part of clueless, self-involved students than perhaps a mere two hours can hold, yet there it was. Snapped at someone. Sent someone else a meme of a double face palm rather than a written response because truly, the fail was too epic for words.

Monday: Noticed that my ankles hurt more than usual, as did my hip and back. Put on my ankle compression socks and my best boots (Born, riding boots, supremely comfortable and not dorky). Determined by the time I got to work that my ankles were horrid, hurting in the front with every step so that getting from the parking lot to the Shop was nearly unbearable. Suffered in silence all day. Child I snapped at emailed and requested a meeting in person about our “misunderstanding.” Assumed the worst on that. Barely made it out to the car to go home. Googled the ankle pain and came up with “anterior impingement”—indicating that each time my foot flexes, the bones are pinching the soft tissue at the front of the ankle. No meaningful treatment options. Panic about necessity of walking. Reminded self that there was an outside possibility that student wanted to meet with me not to complain but to apologize for her role in being snapped at. Took a resentful bath.

Tuesday: Tried shoes with small heel (Reikers, 1.25″ heel). Ankles slightly better but note I am also trying to walk without bending them as much as possible. This creates radiating pain from outside of ankle to knee, plus more pain in hips and back. Meet with student who indeed does want to apologize and figure out what happened, not whine. Very good. A Stalker locates his victim in my classroom, causes disruption. I call the police. Before they arrive the Stalker comes back and I use Command Voice to order him to leave immediately. Use of Command Voice results in an adrenaline rush that cancels out most of the pain in my ankles until late that evening, when they feel like the weight of my feet is far more than they can endure and I lose a small bit of my equilibrium because they hurt so much.

Wednesday: Dress like a very feminine assassin and carry pepper spray in case the Stalker ignores the police and returns. A student says, “You look really great, and like you might hurt someone, so I like it but I’m a little scared.” I wear flat motocross style Donald J Pliner boots. Ankles do not hurt like Monday or Tuesday, but feel achy and weird. Hips, back and shoulders carry the pain torch. Cut out and make a dress for upcoming production, teach makeup class, advise students as to appearance of Stalker and what to do if sighted. Department Chair agrees to install security camera to watch shop entrance. Worry constantly about ankles. Set down and forget about pepper spray several times.

Pretty stressed about what in the hell tomorrow might bring and if ankles will go south again, etc. It’s only Wednesday, dammit.