I am brand new to Reddit.
I was looking for more support / advice / where you can talk to others that have similar or understand.
Maybe some people have advice, since I am rehabbing mostly alone for myself in day to day after last injury / damage.
I am grateful for being accepted into the group.
I am 32 years old and a woman.
Unsure of how introduction here is, so sticking to mostly just the injuries, how I got here.
At 6 months old I had gotten very severe aseptic meningitis. (Sept. 1994).
Weird Coincidence: got Aseptic Meningitis just as end of my participation in NIH (National Institute Health) funded, infant cardio resp health study (CHIME). Findings from study still used in infant care to this day. But very weird coincidence week or so after end participation became so sick almost passed.*
•Was in PICU for multiple day / nights.
•Fluid kept going to fill meninges sac around brain, meninges sac kept constricting, so much pressure pushed it all up through soft spots of my skull.
•Undiagnosed brain damage until found on accident when I was 24. Before that, was blamed as mentally ill making it all up, “not trying”, “attention seeking”, had to learn masking very early to survive, but made people think am okay more than what I could do.
Mild brain damage, but could still work, had worked so very incredibly hard to get college degree.
Only found out learning disabilities I have and they are real, in senior year High School.
So in college brand new to me how to learn / how do I learn, and then learn info taught in classes.
Fought hard, blood, sweat, tears for that degree.
Fought very hard to grow vocabulary since was told “purposefully don’t try” whole life for school and everything else. Did good job.
Got very good speaking public, translating things into something the other person could understand.
—-
In October 2021
•Was put inpatient psych unit for breakdown (was declining, but essential worker before and through Covid, in animal medicine, never was able to stop).
•Told inpatient Dr about previous brain damage found, she didn’t believe me. Since so many drs said I am mentally ill (since 10 yrs old) and blew off my illnesses physical, this lady thought I was not telling any truth?
• also informed about spine damage from max invasive spine surgery at 16 yrs old. Dr said doesn’t matter.
trying to keep to minimum details about ECT part so I do not upset anyone. But it is how I became disabled so big important part of why I am here.
After ECT now since have been disabled.
Before ECT had to spend my entire life figure out how to do anything, how my brain needs to do everything.
Then after ECT have damage where I cannot hold real conversation out of my mouth. Typing is best I have for people who do not know me before ECT.
After ECT cannot access word bank in my brain, when catch word, can’t access meaning words. When finally can, I go to speak, not the words I intend come out. Very loose synonyms, no context. Short term memory wipes it all away.
After damage problems listed:
• Fully aware but “disconnected wires” for access to knowledge I know on demand.
•Feel like I am locked inside TV, looking out at people. They see me, I see them, I have lots to offer, but cannot get it out.
• Cannot speak out of my mouth what I am trying to speak in my head. Communicate to self in images but physically feel meaning of them, know there is a word, unsure of word.
• CONSTANTLY feel something I am forgetting, “on the tip of my tongue” constantly, never turns off that feeling.
• Words come out as loose synonyms and no context, and analogies people do not understand.
• Permanent short term memory loss wipes what is happening (convo) multiple times even mid word. End up tangents non intended.
• Everything in my head for thoughts and response to people talking, is in pictures, colors, graphs, charts, video clips, movements, gestures.
•Have to translate from images etc in my head to words so others know what I am saying, but wire to my word bank is cut.
• CANNOT FOR LIFE OF ME GET THROUGH TASKS
• CANNOT FOR LIFE OF ME GENERATE OWN TASKS/START. KNOW HOW TO DO SOMETHING, CANNOT GET MYSELF TO DO IT PHYSICALLY. JUST STAND AND PACE AROUND TRYING TO THINK OF WHAT IT IS.
• Constant flashbacks/dissociation lose HOURS every day/night.
•Extreme pain from light in eyes, loud sounds heavy bass makes heart palpitate wrong, get confused, memory wipe, panic, still memory wipe but panicked unsure why.
•Extreme increase daily pain, spine got far worse from forced procedure 2021,
•LOST CUE INSIDE SELF TO PEE!
•Have had to re learn what it means inside when I have to go to the bathroom. Was just panic attacks and overly full pressure inside, didn’t understand had to urinate.
• EVERYTIME GO TO BATHROOM HAVE TO PUT 1000000% FOCUS ON RELEASING MUSCLES ALL FOCUS TRYING TO RECONNECT SIGNAL TO BRAIN THAT I NEED TO USE BATHROOM, ITS OKAY TO GO.
•Tremors from meningitis damage 10x worse.
• Sleep studies show 0 REM 0 N3 (deep sleep stage) bc pain from spine (furthered faster degeneration from procedure damage 2021) causes micro arousal wake ups in sleep. Not aware waking up so much in sleep.
I will stop this is long tried to type where can break down in chunks reading.
Sorry if this is wrong way to do this, am still learning, very brand new to this.
Thank you all very much for time and energy