Distortion Filters Don’t Mean I’m Wrong

Author: Vivid Muse  //  Category: Fibromyalgia, Health, Too Long For Twitter, Whining

 

Body
Fibromyalgia is one of my diagnosed Health Blahs. I won’t go in to detail here other than this focus – a kind of pain distortion. There’s a neurological aspect of Fibro that allegedly “turns up the volume” on pain.  It’s a sort of biological input distortion filter that is described as a stereo having the volume tuned up too high. This is a confusing concept, as people are likely to dismiss my pain, thinking it’s all in my head. But I assure you, the pain is real.  And for me, it’s not even measurable, as in, “The pain should only be at a 4, but we can add another two points for Fibro distortion, for a total impact on the patient of 6.”

Whether caused by the immeasurable “volume” increase or actual pain, it hurts just the same.

Why?

Because pain is pain is pain is pain. 

The frustration is tremendous as what I report to the medical community sometimes gets taken apart and evaluated like most others don’t have to tolerate. “Oh, it’s the Fibro amping up the pain, you’re ok.” Or, “Keep in mind that Fibro distorts the pain, what is your pain level separate from that?”

Okay, how about I ask you, “Knife or spoon? You are going to be stabbed with one, and you get to choose. Obviously, you want the one that hurts the least and/or does the least damage. So, which do you choose?”

A spoon will hurt more but won’t go as deep, as easily. A knife will cut an artery, but how much pain will you feel?

Does it matter?

Sometimes, yes. In my experience, the standard 0-10 pain scale (smiley to pained faces on a chart I’ve seen in every ER and hospital room) works like gangbusters, especially when you have a doctor that will actually spend more time listening than their typically double-booked schedules usually allow.

 

Mind

About a year before that diagnosis, my therapist T-Pain, told me I have distortion filters on things I experience, both input and output, that impact my emotional well-being and create conflict with beloveds. The destructive power of these filters is immense and also far more common than I previously believed possible. Meaning, I’m not the only one with them, I’m just the only adult I know that has had it named (and admits it).

Essentially, I hear things (input) in such a way that I attribute all blame, shame or guilt to myself. All bad things are my fault. I do nothing well, and I am a constant disappointment to those I love or those foolish enough to love me.

It also means that at times I have problems communicating (output). My reactions: awkward, stammering, emotional, clumsy, partial, incoherent or circular in logic. The higher the stress, the worse the reaction.

Over a year ago, when my therapist helped me understand what I’m processing isn’t always what people intended to convey, I was thrilled.

Let me tell my loved ones, I thought, so they may allow me a bit more processing time to ensure that I’m expressing what I intend to express. Communication will be easier. Everything is based on communication, so everything will be easier.

A whole new world promised to open in front of me.

I now call shenanigans. Get the broom.

You see, in trying to leave a better footprint behind me, I have inadvertently opened myself up to having any misunderstanding or differences of opinion can be laid at the feet of my faulty filters. I don’t believe it’s intentionally unkind or dismissive, but it remains extremely insulting.

It’s as if learning that about me gives others some sort of legendary weapon in discussions. After all, it’s far easier to close the issue without examining anyone else’s behavior, because, hey, here’s a trump card that I’ve handed over: “She’s upset because of the way she neurologically processes things, not because of anything I did or said. There, that’s settled.”

It’s become a litmus test for me, finding how different people try or don’t try to connect with me. I don’t even bother telling people about my distortions at this point, since so many people have them but don’t see them or understand what they are or how to start the slow process of disabling them. (Hint: You can do it.)

 

Soul
It’s amazing how much easier your path can seem when you realize many around you are on the same path, trying to overcome their own stuff. Everyone has their own distortions, I’m finding. Since there’s no point in waiting on judgment or acceptance from others, I’mma just keep moving, doing my own thing, my own way. T-Pain says I can’t go wrong.

Call it chasing silver linings. (So fun!)

Call me Little Mary Sunshine. (Mary’s a lovely name!)

Whatevs, I’ll just keep trying to get through life with as much love, bliss and laughter as we can Katamari.

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In that vein, check out my adorable Great Niece #2, Baby A. She’s about a month old and I get to meet her next month when Lil Momma (my far off niece) returns with her family for a visit. Oh, the excitement!

100% All Natural Burning Kyooootness

100% All Natural Burning Kyooootness

 

Hope Fatigue (and Silver Linings)

Author: Vivid Muse  //  Category: Health, Whining

I have health issues. This is not news. I call them my Health Blahs and being overweight my entire life, I’m not terribly surprised, other than the timing. No, the real surprise lies in how much can hit the fan in just a couple of years. I remain tremendously grateful that I’ve had only chronic conditions diagnosed, as opposed to life-threatening or terminal. I know I’m lucky and I count my blessings to the point of what must be near-tedium for those around me the most.

Chasing silver linings, I call it.

Some new health wrinkles have made life super interesting for the last six months or so. Because of the new onslaught of testing that they triggered, I recently received news that a biopsy was negative, all clear! I was thrilled and let my terror level on the issue drop almost completely. One less thing to prevent me from getting back on a physical training regimen.

There is nothing new wrong with you, thank God. Keep your hopes up, everything’s okay! It’s not cancer!

*deep, cleansing breath*

Then, instead of the usual skip in my step and a lightening of an invisible lead weight, I slumped under the weight of utter and complete exhaustion. The good news just kinda broke me. It was very confusing. I thought it was one of my wacky neurological reactions by way of relief, but I found myself unable to shake it.

“Great, now I have to be happy and hopeful again.”

The thought of bearing the weight of hope again was a surprisingly daunting task this time. And obviously, this reaction is a curse amongst those of us that follow the path of the Silver Linings.  You give people, places, things and events the benefit of the doubt, every time. You respectfully give encouragement where it’s allowed. And whether vocalized or not, you forgive. Give things a chance to work out, even if not exactly in the way we hoped. When in the darkness, allow yourself to see the silver linings and you’ll often be blinded by their brilliance.

And life is really damned short. I know I say it all the time, but it really, really is. Tragically short, no matter how long you live. How could you not seek light in dark times? Find the silver linings, name them and follow each of their fragile trails. Nourish them and feed them hope. Otherwise, how can you even breathe in the universal horror and aftermath of so many tragedies and hardships of humanity, as well as in personal relationships in recent years.

Yes, hopes get dashed. I don’t count disappointments like I do blessings, but sometimes wonderful people do unkind things. Sometimes test results don’t go your way. Sometimes things go wrong, with or without a person to blame. And sometimes, you get tired of re-lighting a candle that keeps getting snuffed.

It’s the first time in my life I’m feeling a real urge to go dark, as in, take a break from Hope and Silver Linings and all the disappointment that they bring. Take a break from social media and the boost it usually gives me – less isolation to make me cray-cray and what-not. Skip Balticon and other gatherings of friends. Hibernate, until the stings are faded. But, even in the comforting lull of solitude and quiet is something trying to kick me out of the dark and back into motion…

… captivating high-pitched giggling from upstairs; plans for LT’s summer visit have solidifying; a happy and smitten; dreams of a visit by J; opportunities for time with far-flung family and friends which guarantee face-breaking smiles and joy; making new friends; countless loving gestures and endless patience from my husband; an increase in time with  joyful little kids; unspoken dreams and downright plotting; plans for seeing my distant niece and the family she’s made; glorious spring days with my husband’s hand in mine as we watch Kaylee frolic like a puppy…

Realizing that even when the day is ending with the sun going into hiding for another night, we are still given a view that has inspired countless people with its beauty, a spectacular image to carry into the darkness with us. Burned into retinas at times, and others, it’s just the idea. The knowledge of what awaits them if they care to turn their eyes towards the upcoming dawning light. The darkness is bookended by a brilliant show of nature, eternally promising light and warmth. The night is long enough that we appreciate dawn when it comes, and short enough that we can easily hold the memory of sunlight against the dark night. You don’t even have to have hope for it to happen. It just will.

Going dark would be a real struggle, is what I’m saying. Isolation speeds the process, but it’s not a fun one to live with, and I won’t do that to Chooch or our Housies. And I can’t when I’m around our kids. If only it were the right time of year for a good sulk in a cave somewhere.

Instead, I’m setting limits on time and expectations (more on this when I’m feeling less fragile) and counting spoons. My shrink had to remind me to save one each day for myself. Can’t believe I forgot about that, but I’m now saving two each day: one for me and one for Chooch. And when we are with our sons, I’ll also save a spoon each for them. I mean, if I can’t take care of those that give me a reason to push myself out of the dark, what’s the point?

And yes, I’m exhausted, but as I brace for another appointment, I’ll sling my bag of Hope back on. I always do, and with beloveds like mine, it’s not actually that hard. Just…

urrgggggh

Unguarded, Within Castle Walls

Author: Vivid Muse  //  Category: Chooch, Friends, No Whining, Too Long For Twitter

Edit: I’m hoping to post a review of Ravenwood Castle itself, but I first wanted to share thoughts from the social experience point of view, since that was the point. Since I never know how long a post will take me to finish, I will say that I recommend it highly. The board games on hand and the atmosphere of the great hall made it impossible not to enjoy the experience. In short, I can’t wait to go back for another relaxing visit.
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About a month ago, my husband and I were invited to join in on surprise birthday festivities for a friend. It turned out to be more fantastic than we could have hoped, in spite of our high expectations and my Health Blah aggro. There were old friends (comparatively speaking, back to the beginnings of my Twitter experience in 2007), but also new friends. And it takes only a tiny bit of bravery to say that, because I feel the bond of a shared experience, even if I didn’t get to spend much time with each of them.

And while I wish I had been less shy and gotten time with everyone, I prefer to err on the side of not being a pain in the ass (whenever possible). Besides, I cannot imagine being able to retain even ONE more memory or survive one more breathless and teary-eyed laughing fit. As I was trying to gather my scattered and grateful thoughts together to do a post commemorating the heart-container-filling weekend, something triggered a recurring thought, and I’ve decided to use our weekend setting to better noodle through what I keep returning to:

Human interaction is an unpredictable roll of the dice, as ALL parties imprint on shared experiences, depending on their mood, behavior and personality.

And in this case, it was tasty. 

Invited party guests were asked to keep it all quiet, both to keep the surprise from the honoree and to avoid hurting the feelings for those that space did not allow to include. It was excruciating not sharing more, but I will say that with the right combination of people, anything is possible.

The only downside was that we were “roughing it” without internet, cell signal or HD TV’s blasting ticker tape news over a reporter talking in another direction. An insulated bubble was in place around us and we were (primarily) our only distractions. Phone calls were not easily made, people (myself included) were not constantly reaching for their devices to check for messages, tweet, post or otherwise spend their time with a mental foot in the outside world. I found myself grateful to be disconnected with others that were more appreciative to be there than to waste any real time watching for connectivity, save those with important matters to address.

More frequently, people expressed gratitude for the experience and the efforts made by all to keep it truly special and just embraced it. There were some jokes and comments made, but I don’t remember anything other than general statements like, “Well, I’d check IMDB.com to tell you what else Ryan Gosling was in, but I can’t!” Which was typically met with laughter rather than kvetching.

In regards to my Health Blahs, the weekend reinforced in me, after several occurrences, that taking the time to meditate, nap or whatever else is needed to be on an even keel, MUST be done. Not only was my experience improved by trying to manage my neurological symptoms as they arose, but I found it easier to do so knowing that my “energy” or “mood” or whatever you choose to call it, could have a negative impact on the experience for others. 

When I wasn’t feeling well, I could easily take my leave and return recharged and ready for the next fascinating and/or giggling adventure. And although he offered, it would have been unkind to allow Chooch to come with me to give comfort when I was fine, just in pain or managing some symptom or another.  Better to leave he and the others to their fun and come back to watch or join in on the gaming, if and when I was feeling well enough to, for the greater enjoyment of us all.

But as for the impact of everyone’s mood, I think it’s the same kind of thing that all that advice from the Dog Whisperer and other animal trainers (as well as those that do Super Nanny/rescuing children in unhealthy situations) all boil down to — demonstrating how crappy behavior by those in charge directly impacts the behavior of their (fill in the blank). If your emotions are in conflict, you are likely create chaos in those around you. “Taking Five” or a “cigarette break” or a “mental health break” all fall into this as well. It’s a kindness to all, practicing self-care. This is kind of an epiphany for me, since I always put my energy into helping others and then straggling to keep up when things are in motion again. 

It also helped knowing that I wasn’t alone in the need to occasionally isolate myself. Others have similar health issues, anxiety issues, creative projects to work on, or whatevs, so I wasn’t mocked or teased for being a light weight. Or any other weight, for that matter. Even without a moat, I felt utterly safe.

I don’t know what my point is, other than total relief at having found myself in the middle of a group of people in a castle in the woods that were all of a similar mind, all being respectful of everyone else’s needs for the Greater Good. All being fascinating, extremely clever and open to the experience.

And, as always, the kindness demonstrated towards my husband always makes me appreciate the giver more, since I don’t think Chooch has revealed even the tiniest fraction of just how magnificent he really is. I’m an instant fan of anyone that gets that his Greatness. I mean, just look at him, for Glob’s sake!

Again, happy birthday to all we celebrated! Especially to my beloved Chooch, whose 42nd birthday was days later. Here’s to you, my love, and a birthday we’ll never forget.

(Photo taken by the stunningly talented and utterly captivating J.R. Blackwell. Many thanks for an image that we’ll treasure forever.)

Chooch Schubert at Ravenwood Castle in New Plymouth, OH. 03/09/13

Chooch Schubert at Ravenwood Castle in New Plymouth, OH. 03/09/13