TBI survivor

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One breath at a time. #Anxiety #CPTSD #PTSD

And if I can’t feel myself breathing, I force myself to breathe mindfully. One breath at a time. #Recovery #burnoutrecovery #MajorDepression #TBISurvivor

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Ideas for items to keep me cool while boating?

Hi everyone,

Does anyone have any good ideas for items for me to have with me to help keep cool when we go boating for my sons birthday? I don't do good with the heat at all, I can't regulate my temp. Any ideas would be greatly appreciated.

#EhlersDanlosSyndrome #Gastroparesis #ComplexRegionalPainSyndrome #EagleSyndrome #TBISurvivor

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I'd love it if you listened to my podcast :)

anchor.fm/dearmeitsyou

I've been working lately on a passion project to convert my book into a spoken word podcast series on anchor. In it, I discuss themes of navigating mental illness, starting over, and healing.

#MentalHealth #PTSD #CPTSD #TBISurvivor #AssaultSurvivors

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Songs that help #TraumaticBrainInjury #TBISurvivor

Some songs just ground me and lend me some motivation after my TBI. Beyonce's "I was here" is one (link below) because I SURVIVED.

www.youtube.com/watch

Others are Delilah's "Strong for me" and the Paper Kites' "Bloom".

What are your go to songs when you need a connection or a feeling that keeps you going?

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Just want my old body back #ChronicPain #fibrowarrior #DiabetesType2 #DegenerativeDiscDisease #aces #traumasurviviors #TBISurvivor

I just want the abilities I had ten years ago back. It gives me so much anxiety for the future watching my health and body decline so quickly. I can only do about a few hours of good work, with lots of breaks in between and then I pay for it for a day or two. I'm 42 years old, recently unemployed, and I'm not sure where I am going to fit in the working world with all of the health issues I'm battling. I don't think disability would support the very basic lifestyle I have.....help, I need someone who relates to this.

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Talk about unwelcome on IG! #TraumaticBrainInjury #TBISurvivor

Wooooow. I searched for the hashtag on traumatic brain injury on Instagram to find the other people posting about their experiences with it, and THIS popped up instead.

Well, I always knew the world hates when we start talking about what it’s like to live with this Hidden Injury that anybody could get so easily at any moment.

Driving to work every day.
Carrying laundry downstairs.
Walking across the icy parking lot.
Toddling toward the table at two years old.

Boom. That easily.

The world is soooo uncomfy with us. And it really hates when we open our mouths and demand to be visible. I’d been wondering if Facebook was penalizing me for some of the stuff I share, especially as we head into Drinking & Driving Season. It’s come early and on steroids this year.

So I disabled my FB account last week because I got sick of the demoralization and loneliness from post after post of crickets. Seeing this, I’m wondering if I need to do the same to IG.

I’m wondering if it was less my audience not caring but rather more of a bias and stigma from the platform itself.

Yet another example of censorship and marginalization. Thanks for that. Reaching out and connecting with my fellow dain bramaged peeps does not make me question my desire to stick around and live under fabulous self-care. But being singled out like that, having to jump through stigma hoops to connect with my kind (dastardly, corruptive basket cases that we are), being told that the merest mention of my disability might lead others to harm or their death? Yeah. Good thing I’m so hacked off that depression and despair are miles in my dust.

Woooow. I’m allowed to search CancerSucks without that issue. And CovidSucks. I can look up Autism and Lupus and even StrokeSurvivor and scroll posts for miles. But TBI gets a warning label?

What is that?!?!

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My Spoon Devouring Social Circle #TraumaticBrainInjury #TBISurvivor #CPTSD

I haven’t posted on my memoir-blog in awhile about TBI. I got to the point in the story where domestic violence and my best friend’s betrayal happened. I just wasn’t ready to talk about that yet.

Instead, I shifted to how cPTSD impacts my ability to weather brain injury, and how my frontal lobe damage affects the ability to deal with the older traumas.

Well, I just had a hard conversation about drunk driving. ‘Tis the season. Seems to be this time of year that lights a fire and brings out my educational fangs. So I posted a piece likening my experience to being downgraded from a supercomputer to a musty basement crammed with badly organized filing cabinets. Yet still being expected to produce and shine and produce and smile like before.

For the past 20 years, I basically have a collection of Impressionist painting galleries instead of memories. (Oh, except the traumas. We have that crap on high-def video from 4 different angles.) 😝

The next part of this post is about how people don’t like it when we talk about the reality of this stuff. What it’s truly like. How it’s too scary. Too depressing.

Yet they asked. “Ohhhhhh you’re soooo inspiring! So strong blah blah you should write your memoirs.”

I think they’re regretting that. Because I’m not censoring them this time. I told some of these stories 15 years ago but they were highly redacted to protect the not-so-innocent. Now I do change names and obscure many identifying characteristics.

But I suspect the world wishes I’d just go back to writing glitter-washed Tales of Overcoming with triumphant Hollywood endings.

Here’s the deal. There is no Hollywood ending. There’s just my life. And honestly? I think that’s 1000X more inspiring.

But I live half my time in the Underworld and I’ve learned to find the beauty down here. My hobby is learning how to hack my brain so I can find happiness amidst pain, life purpose while feeling like a parasite, and motivation when all I do is swim upstream, pour my precious gifts out on the cracked concrete, and scream my heart out into empty vacuums of space.

They just don’t get it out there. And they don’t wanna get it. I don’t blame them. I wouldn’t have chosen this either. But it means I’m very, very alone. And very lonely.

This pandemic gave me a few gifts. One of them is the realization that 98% of my relationships were toxic. Being away—I can breathe again. But that means I have almost no one I can truly talk to and connect with.

In truth, I didn’t back then either. I just didn’t know it. I also didn’t know why I was miserable. Now I do.

I think it’s better to know and be lonely than to be cluelessly surrounded by people who don’t get me—and don’t wanna get me.

They’re reading that blog post. The numbers show it. And yet...

🦗🦗🦗

Nothing.

No. If you don’t move, that doesn’t mean I’ll go away and shut up about it. I won’t get back to smiling and producing to make you feel comfy.

But that kind of tenacity devours gobs of Spoons.

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I Could Not Tell #TraumaticBrainInjury

So, my next door neighbor allowed me to sleep over almost every night; however, I was awaken with a paragraph of a text which told me I could not stay over every night and to come get my stuff. That was the gist but I just could not tell I was an outside guest who just so happened to have a kind heart. I guess she didn’t want to tell me in person and I do understand. I just could not analyze that I was quickly wearing out my welcome. There are some things I wish I could tell these things without being told. 😔 #TBISurvivor

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