Saturday, March 9, 2019

Slowly Slipping Away.

No, it's not the song from the Toronto band Harem is me, unfortunately.

This is a subject I rarely talk about and as things get worse I feel it's imperative to write it down before it gets worse.

I am talking about....

Tramuatic Brain Injury. TBI. Sigh.....I always considered myself lucky after brain surgery that the TBI was what I would consider a mild one. But as the years go by. It has progressed worse.

I have been discussing with my doctor how my TBI has affected me and how it is progressing.
Annoying? A little. Embarrassing? Sorta. Scary? Asbsolutely. Frustrating? Yes.

It started with little things. For a long time and even now bending over made me light-headed, Laying on my back without a pillow was the worst. It came along with nausea. Being unsteady. It took me a full year to be able to tie my own shoes without falling forward. It took 6 months before I started to get feeling back on the right side of my head. Weirdest feeling washing your hair, and have no clue if soap or even water is touching your head. Coming from a guy with such a sensitive scalp from headaches. I literally feel every strand on my head. The feeling came back in my head 100%. The goose egg where they drilled into my head is fine. I can tap it with my hand and feel no pain. The wires coming out of my brain to where they connect to go to my pacemaker is extremely sensitive. Even the pillow on my bed bothers me. The pacemaker floats in my chest and is discomforting but tolerable with adjustment.

Funny, I remember back as age 4. I do, but ask me to do something now and remember in 5 min. Well, chances are I have to log it in my phone or write it down. The only thing that works for me is alarms on my phone or repetition. Short term memory loss isn't fun. It is embarrassing and frustrating.

Sounds. I can no longer tolerate high pitch and certain tones without cringing. It feels like a musician using a tuning fork when it goes ping but is in my head/ears at a much greater volume than anyone else can hear. The deep earthy base is fine its the higher tone/pitch that irritates me.

Light. This includes the sun to the light bulbs. I prefer dark rooms. Fewer sounds. It also mitigates headaches. It's such a shame. I love being outside. I'd rather be outside 24/7 on a warm sunny day.

Moods. I am a very positive person. I try to always see the good in others, avoid the news because of its negative. And try my hardest to motivate and inspire others in a positive way. I am the type of person to think of others before myself. But lately, I have zero tolerance for bullshit, idiots, people who are self-centered and egotistical and just plain fucking useless tits on a bear. Really my fuse for ignorance and tolerance of morons is an all-time low. With that being said I get upset easily. And I hate it. An old neighbor of mine had a brain injury and he changed too. He was the sweetest guy ever and when he got injured he changed. I have spoken to my GP about this and I am not swallowing pills to change. I am working on this myself to try and better respond to complete fucking idiots. Sometimes you can't fix stupid yet I am the one with the brain injury.(shrug shoulders).

Cognitive issues. Since surgery, I struggle to read things unfamiliar to me. I have no clue why. If its something that interests me like cars or awareness or even writing this blog, no problem. Ask me to read a legal document. No thanks, I had it to my wife. The words float off the page and jumble in my brain and its frustrated. I feel like a moron on most days. Processing things in my brain seem to be a huge effort. I have to check, recheck and triple check if I don't forget after doing something, Example. I know it sounds silly....but Ill fill a washing machine with soap and water, and forget to put the clothes in. And this happens all the time. I do not buy for a minute that its because I am getting older.  I used to multitask customers in front of me, 3 phone calls, typing on a computer, having mechanics ask me dumb questions etc. Now I can't even remember to do the simplest of tasks.
I once was driving down the highway and all of a sudden I had to pull over and check my phone and look around my car to even remember where I was going. I had no fucking clue whatsoever!!!. Scary shit.

And as of recently. I have been what I call freeze talking. Imagine someone about to stutter or start studdering. Well, it's like that. I start to want to say a word. And then it gets stuck. Not like trying to say the word "Wolf" as an example. I don't go Wa wa wa wa wooooolf. I just go W and freeze for a few seconds and then it spits out. My brain wants to say the word. My mouth just stops. It's so embarrassing. It's frustrating and humiliating. It started about 6 months ago. Was like happening once a month. Now it happens almost once a day.  Freaking weird. My Dr. and I discussed it. Definitely brain injury related. It's not a huge deal. I am in so much pain all the time that its just another shit thing happening to me. But it worries me as its progressing, will I be able to still talk? Will this get so bad I stop talking or? Fuck, I hope not.

I really think a lot of the health issues are all interconnected. A few months ago my body temp started dropping. Ice cold to the touch. Being a heavy guy I run hot. Now for no reason, I'll just be sitting there and I turn ice cold. But I can be outside in -15 c wash my truck and not be cold. Weird. My legs started burning off and on months ago too. No rhyme no reason. One week my left leg burns, the next week my right leg burns. Happens 20-30x a day. Sometimes lasts seconds sometimes 20 min. Walking, sleeping, in the shower. Doesn't matter if I am still or moving, And makes no difference if I start moving. My doctor and I chalked it up as Neuropathic pain.

I wrote this blog not to give you a medical history of current health but to share with other TBI survivors. That you are not alone. It is not your fault.  It sucks huge but I am still trying my best to be the best I can be. If others are bothered by your TBI, don't care or understand than it is their loss.

So, what is next for me? I feel like I am watching myself slowly slip away.

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