What are some things I wish I knew?

Posted by christianann @christianann, Jan 27 10:42am

Addiction, divorce, Severe short term memory loss from self inflicted carbon monoxide poisoning. Cop saved my life. Totally wasn't grateful. Eventually became grateful, humble, happy. But now...20+ years later, I'm changing at a rate I can't fathom. I'm absolutely hateful, no tolerance, angry, let down again, a victim of myself. Nothing goes right, beyond hyper sensitive, people who were supposed to take care of me failed. Mental health is terrible. Can't support myself financially. How could i not know that you can't file for disability 20+ years later, or that medical records are purged, I had them,I wouldn't throw them away, why doesn't my mother know where they are? I'm experiencing a thousand different medical issues, and finding out they're all linked to carbon monoxide poisoning. Getting judged or shunned, or thought of as just an ungrateful bitch, because family doesn't educate themselves on long term effects, which just makes me more hateful. I have no desire to hurt myself or anyone else, but I can see how this could easily end feeling pushed full circle back to self harm. I hate that cop. I do want to live. But now seems like I thrive off of being miserable. When I'm happy the world rips the rug from under my feet. You can literally watch that evening I try does not work out for me. There's so so much more, but I lost interest in this 15 sentences ago. Applied for disability just after it happened. Denied. Then my care gives said I didn't want disability so they didn't re apply. Wtf? Recently went to neurologist to try and start disability process again, I present to well, she doesn't believe me that event even took place. Says I can't remember because I snore, severe sleep apnea, I find out several years later could try disability on that. Why don't I know these things, or think of them, I feel pathetic, I feel every emotion there possibly is on a daily basis. Every single one. I forget to help myself. I forget where I was going with this. No desire to read it and try to figure it out, thanks, good luck to you though.

Interested in more discussions like this? Go to the Traumatic Brain Injury (TBI) Support Group.

gregd1956 | @gregd1956 | Jan 28 12:33pm

Hi @christianann
The last 20 years that started good, but now… I’m not sure of a TBI place, but you’ve been big problems, physically… from breathing , alcohol uses, marriage, and on. I hope another leaders ot friends in the MAJO membership instead brain-injury usage.
Thx… and sorry,
Greg D. @greg1956

Lisa Lucier, Moderator | @lisalucier | 5 days ago

Hi, @christianann - I'd like to invite some others who've talked about brain injury on Mayo Clinic Connect to meet you and join this discussion. I'm guessing some of them can relate to some of the difficulties you've been through. Please meet @dawnpereda @lakelifelady @carnes @rosexxxx @kdubois @kayabbott @cjackura. I'd also like to introduce you to @becsbuddy.

christianann, it sounded like you were facing multiple challenges when you posted in late January. Wondering how things are going this week?

kayabbott | @kayabbott | 4 days ago

@christianann As you have found, it is hard to pull yourself out of a deep hole. It is too easy for family and medical folk to dismiss someone in pain. It can tank your ego. Disability is hard to get (it took years with my schizoid brother, and it didn't happen until he was documented to be completely unemployable). You mention caregivers; are they family or others? I remember my TBI from 31 years ago and how people treated me as less. Are there things you can do to escape? Reading, social or group events, others? I hope you are better, but brain injuries do tend to be emotionally up and down.

lakelifelady | @lakelifelady | 4 days ago

@christianann, my TBI happened ten yrs ago as a result of a car accident. I had a brain bleed, broken neck, six ribs, and multiple stress fractures down my back and a right ankle. I still have a small spot of encephalopathy in my frontal lobe. Aside from wearing a neck brace and turtle shell for my ribs to stay in place I used a walker and had in home nursing service to help with bathing, hair and rehabilitation. Emotionally , I had PTSD and high anxiety. 😬 While riding in a car my arms would fly up and I would scream 😱 at any chance of a sudden stop or collision. This was called exaggerated startle response which I still have to a lesser degree. I went to counseling during this time . It helped. I started an anti anxiety medication which also helped with dizziness. I was dizzy most of the time for several years, then one day I realized I was not dizzy. I still have dizzy spells , auras( circular spikes in one’s field of vision) and silent migraines ( little or no pain but fatigue, nausea and vision issues) that require strong coffee and a darkened room for a good rest. Strong light seems to trigger these episodes. Very sunny warm days are a trigger for me.
Well there is more but on to intellectual difficulties. After three bouts of CoVid I was diagnosed with long Covid which manifested as fatigue, forgetfulness, brain fog, lack of concentration ( filling out forms, paying bills, maintaining conversations with small talk, etc) . Being in a room with multiple conversations going on at once shuts me down and I cannot wait to get out of there. Now, some of these symptoms I mentioned could be attributed to my TBI which complicates any diagnosis of Long CoVid but there you have it.
Now I am out of steam but would welcome questions and conversations in days to come. I still have ongoing issues related to the accident and TBI.

kb2014 | @kb2014 | 3 days ago

What do I wish people knew? Craniotomy done 2014 due to access in left temporal lobe from bacterial meningitis of my brain Life changing event in a good way. I do wish my parents would havd been educated on recovery and that a different person would emerge instead of being the old me and just retiring. I recovered remarried moved from my lifelong home state. No regrets about my illness now. I was coded on a vent in a medically induced coma multi organ failure.

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