Blog post,  Encouragement,  Faith,  Invisible Illness,  Life,  My Journey — My Truth,  Sarcasm,  Seizures-Episodes,  Sensitive Subjects

Unabashedly Me — Living With Non-Epileptic Seizures, Daily

September 18, 2022

We All Have “Shtuff.” We Deal. We Move Forward — The Best Way(s) Possible. Hopefully.

Some peeps choose to run. Running away from one’s troubles and/or people helps no one (buck-it-up buttercup). However, in some situations, perhaps running might be the best scenario for all parties concerned. Truth hurts. Sorry-not-sorry.

Screaming from the top of one’s lungs might be a good choice, if into a pillow or out in the middle of a secluded area (otherwise could quite possibly scare the bejeebers out of any living being within earshot) — something to consider.

Punching things is often an instant reaction. Little-to-zero thought involved with this option. There is, of course, the “what did you punch” minor detail, and (a) did you break any bones in the process; (b) did you assault another person (technically, should be (a)); (c) is there damage left behind. A litmus test of wrongs will follow this particular poor choice of stress release. So… basically, DO NOT punch in anger — in addition to many, many terrible choices.

Just don’t do it/they/them!

Alternatives: Take a few deep breaths. Count to ten. Meditate. Pray. Exercise. Have sex (with a consenting adult). Drink calming tea. Have read where there are great sober drinking options, should that be your thing.

Bottom line: Act like an adult — or at least chose to cope with your shtuff as adultly as possible, and in a productive, forward moving fashion. Try to be a positive influence for our future generations. Please!

Sometimes we fall short. And that’s not always ok, but is ok. We are only human, after all, not perfect beings. So we keep doing the trying part, no matter how many tries it takes. The Big Guy never gives up on us/you (no, not Biden, he’s too busy taking a nap, the real Big Guy!), so don’t you ever give up on yourself.

Seizures + Shtuff

After a recent seizure-episode, as my body was shaking vigorously, tremoring, writhing in pain, rolling across the bed in a full-on furry — as though knives were repeatedly attacking from every direction, tears streaming down my face, pleading with God for this episode to stop, and soon — I think I shared (in a loving and polite manner) the following with my husband…

”Keep the Tony Robbins-like platitudes — ‘you got this’ and the ‘just breathe’ — crap to yourself. Save if for the people who actually wish to and chose to hear/believe these words.

More power to all the Robbinites. Go all you people!

Personally, as well as a large section of the long-haul + complex, chronic-illness community will express, that’s a bunch of toxic positivity. And to shove it, respectfully.

Some days, I DO NOT have it. And… I DO breathe, thank you very much… at whatever level and ability my body allows.

And should I ever see Tony Robbins, my suggestion would be for him and that big, bright smile to turn and run the other way. As fast as possible. Just sayin’ — that might be best for everyone.”

These episodes (along with Lyme flares in general) are extremely difficult to explain much less understand. And impossible to, unless one experiences first hand. Trust and accept, no amount of “you got this” and “just breathe” is going to help. Ever!

However, empathy and concern, when genuine, is always cherished and deeply felt.

Sappy Alert: To my hubby, in a sincere loving manner — for the love and compassion and wanting to take away the pain and misery I have and do experience daily… and all the things (even waaaay back decades ago, before these seizures and other crap++++ came to visit) — thank you for your patience and never giving up on me. I love you… now and for eternity. Sorry for the Tony Robbins blurt and platitude comparison. It was totally an in the heat of the moment thing.

Family + Caregiving

As noted, I kinda dig the hubs, and well, my family is darn special — more than can be expressed in one measly sentence, hidden in-between several paragraphs of a rambling reflection.

Without any hesitation whatsoever, once the seizures hit full-force, hubby and my middle sister dove all-in to the full-time caregiving deep end. (Not to be dismissed, my eldest sister has graciously offered and provided her caregiving skills quite regularly over the years, and big bubby has swooped-in, always when needed, not to mention what he does behind the scenes to help with our 96-year old father (another story for another day).

Attempting summary in one sentence: My family totally rocks, and rallies together when the bell rings.

To be clear, the recent seizure-induced caregiving gig is a bit more entailed than the occasional heating up or making a meal and/or making sure I am OK while the hubs is out of town. Will spare details and my dignity as much as possible.

On any given day, a creepy, sneak peek into our windows (nope, not an invitation) would show me barely able to use a cane to wobble a few feet away from bed. Instead, needing to be carted around by wheelchair. So there’s that. Imagine everything else I am unable to do for myself (preferable in a non-creeper, window peeper way!).

Huge kudos to hubby and the redheaded sister for their “survival skills” throughout this seizureing-episodic-exploration adventure.

On the really hard days, I am no easy patient. On easier-going days, still a challenging patient.

These past several months have been an interesting learning curve, for all of us. Lots of tears, and that’s just a Tuesday. Check with me/us on any given Saturday. Too many medical appointments/ hospital encounters. Anxiety and prayers… at an all time high. And patience, well… who has time for that!

Empathy Runs Deep

Please know lovelies, that even though I am heavily weighted within my own shtuff these days, thoughts also go out to you — I have enormous empathy for your pain and suffering and struggles. Would also love to celebrate the joy and happy times in your life. Praying and hoping to get caught up with my tribe soon.

A major shout out to those who carry the responsibility and heaviness of living with illness, and who struggle day in and day out. Dear incredibly strong human beings — carrying life-altering, disabling burdens — you are heard and understood, as the weight is heavy on you and the family, much respect and empathy. Sincerely hope you lean firmly upon your tribe, near and afar.

Happy thoughts, joy, extra strength, prayers, love and light go out to individuals and families needing all the feels right now — and surrounding them always.

Please join in sending good vibes out into the universe for those needing extra all the things coming their way.

Faith

Beautiful friends, we may not believe in a similar Higher Power. Don’t let my faith push you away. Promise I’m not trying to force-feed anything upon anyone. Simply sharing what is weighing heavy on my heart these days.

We hear it, we say it and we believe… God only gives us what we can handle. Some trials we doubt and question why, as we stumble to find our way. Are we living in fear? Losing our Trust in Him? Possibly. Temporarily. And that is ok. He is with us, always, even when we think we may not feel Him close. His comfort is there. He is guiding our path; blessing us with His mercy and grace; giving us strength.

What I am personally experiencing is meant to be — is part of my journey, for a greater purpose… that I may never truly understand within this life. Trying to use what I am learning along this bumpy path in a purposeful manner (emphasis on trying).

His Will. His Way. His Timing. Not mine!

I pray that part of His plan is for me to be free of these painful seizures, for a lessening of miserable, debilitating symptoms, to no longer be bedbound, to regain an improved quality of life, to allow for more time with family, for Him to continue showing me the way and to help guide me and provide wisdom along this illness + healing + life journey.

The Real and Raw

And while I may soften the edges and try to keep things as light as possible… it is all moment by moment, lovelies.

There have been/are seizures-episodes when I plead with God to please let me come out of “this one” — to please not let me stay trapped inside this dark and frightening place; or if this is where I am to remain, please let me have peace and calm, to be free of this pain and suffering.

I have held hands with my mother and danced with my brother. Both of whom are in Heaven. Both hallucinations offered me peace. Think I’m crazy, that’s ok. These separate fictitious (were they?) moments that occurred during two separate seizures-episodes, helped to offer me comfort and calm — gave me peace. I am 100% OK with that!

And NO, I am NOT having a nervous breakdown, for anyone concerned or judging. Definitely having some cooky shtuff happening. That’s part of the root cause physicians are searching for — that I am asking physicians to find.

The incredibly real and the raw of it, I am barely keeping my shtuff together. I’m buckin’-it-up-buttercup, too ill and weak to run anywhere or scream into a pillow, much less punch anything. The only poor choices happening around here is whether or not to cheat on my extremely boring (yet yummy, not a diss, sis) diet, and then pay for it the next two+ weeks. Definitely not worth it!

Despite the rough days, blah, blah, blah… life is pretty darn good (especially on the scale of comparisons, which we shant be doing). Wiping away the tears on the worst of the worst days, I am still me — happy, bossy, sassy-ish, just a quieter, sleepier, seizier version. We’re just working through some really hard, bumpy-pieces-parts… more than the norm.

As Tony Robbins wannabes promote, ‘we got this!’ — (If ever in my presence, I will eye-roll their asses! lol!)

Until my next Reflection…

Blessings, love and light — always!

Hugs from my corner of the globe to yours.

Side Note: Took me a little over four weeks to write and finally finish this post, and then three days to proof and “polish”—add two photos! Was a little busy with “seizing the days away” and all.

In comparison: Writing a typical blog post, when feeling “decent,” generally takes me a few days in total — to write, proof and polish.

Nonetheless, I am excited to have been able to complete this one. Who knows when the next will come along. Could be a while.

Probably not going to be up for mastering a newsletter, so unfortunately many subscribers may not receive this post, and I apologize for continued technical hiccups.

Be well, lovelies.

Until next time! — terry

Disclaimer: No advice — medical or otherwise — should ever be interpreted by anything written or read above or anywhere on this blog/website. Content and opinions shared are my own — most often weighted heavily with sarcasm and weak attempts at humor.

Photo: James R. Maxson — ‘Morning Mercy and Grace’

Over here reflecting about life, illness + healing. Offering encouragement + empathy + support. Sharing smatterings of sarcasm + sass. Oozing with opinion. Speaking my truth. —tmm

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