Saturday, March 23, 2013

National Brain Injury Awareness Month

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I meant to get started on this post weeks ago.. and here it is almost April and I'm just now writing. So typical :P Anyway, March is National Brain Injury Awareness Month so I wanted to talk about it a little, which of course means I'll be talking a lot.

There are numerous causes of brain injuries. Some people are born with it, others such as myself have it as a result of actual injury after birth.

I was diagnosed with migraines at the age of 4. By the time I was 10, I realized my head hurt every day and at some point it started hurting permanently. Right around the age of 9 or 10, I joined the school soccer team. There was one incident in which I must have gotten hit in the head or something, I'm not sure what happened exactly. I just know that I blacked out and I don't know what happened. By the time I was a pre-teen, my headaches were getting worse so I started seeing a doctor for them. It was found that I had some seizurely activity but that doesn't necessarily mean I was having seizures.

At the age of 14, I one day went for a walk with my boyfriend at that time. We were attacked by 3 boys, 1 of which I knew from school. I was punched in the face and I was knocked out. My head hit black pavement. I only vaguely remember being escorted into a police car, driven to my house, and then taken to the emergency room. At this time they said I probably sustained a concussion. Roughly a month later, I was back in the ER again because I had a seizure at school (Complex partial, I believe.)

The following years, I had several seizures, probably more than we know; I had to under go a lot of tests and try many different medications. I really don't remember much about those years. When I was about 17 or 18 I was finally diagnosed with Petit Mal seizures as well as the Complex Partial after going through a video EEG. It was at this time I was finally diagnosed with Epilepsy because it was finally understood that I had had more seizures than what anyone realized. It wasn't until I was 20 that we finally found the right medicine to control my seizures.

Fast forward to last year, when I was 32 years old. I finally researched brain injuries and understood exactly what had happened to me, why I am the way I am. It was my understanding that Epilepsy was my big problem in life, which never made any sense to me... it never made sense to me how epilepsy could cause my headaches, for instance, because the headaches as far as I know started before we were aware of the seizures. Key word there - aware.

It wasn't until I researched brain injuries that everything clicked into place. The frustrating thing about the nature of brain injuries is that you can be told FACT 1, and FACT 2, etc. but until your brain puts the pieces together, you just don't get it. Obviously in my case, this took a very long time. I've also just recently come to realize that I've been dealing with Post Traumatic Stress Disorder all of these years as a result of the assault and injuries I sustained 19 years ago. So in short, someone with brain injuries can be told they have a brain injury but often apparently will be in denial.

I can only tell you how this has impacted my life. I suppose it's different for everyone. For me, it's like being two people: there was the ME before all of this happened. Pretty much a normal person, except I had more headaches than most. Then there's the person I've been for the past 20 years or so... which actually feels more like half a person. I am a perfectionist, so needless to say I've made this very hard on myself.. probably harder than other people would take it. I know I can't be perfect, but I still strive to do better all the time and I still yell at myself if I do something wrong, no matter how silly and meaningless it is.

Aside from being in pain 24/7, there are a few other things I now deal with. The pain makes me depressed, of course. I have a lot of difficulty concentrating and keeping my thoughts organized. Sometimes I try to think of something and I just get this mental block.. like there's literally a brick wall in my way, preventing me from thinking things. Additionally, I suffer from really bad anxiety... I tend to think of it in terms of an "anxiety switch" like when the brain injury occurred, my anxiety switch or button got permanently pressed to the "ON" position. I know this is partly why I have hypertension, but just nothing so far has fixed this.

Here's a very short list of the changes that I've had to deal with as a result of the brain injuries I've sustained:
  • Lethargy, daytime sleepiness
  • Insomnia
  • Decreased memory and new learning
  • Decreased attention and speed of processing
  • Decreased judgment, insight, and planning
  • Decreased language abilities (understanding another’s speech or finding words)
  • Decreased speech abilities to articulate words so that others understand
  • Depression and anxiety
  • Irritability and explosive anger
  • Impulsivity
  • Visual disturbance
  • Decreased balance and vertigo
  • Decreased hearing (not so much hearing per say.. but understanding what I'm hearing. sometimes I hear words and it takes a few minutes for my brain to process what I've heard.)
  • Chronic headache
  • Muscle and joint pain from trauma at the time of injury
  • Burning/electric type pain  from nerve dysfunction
  • Motor Weakness
  • Decreased coordination

 Some of those issues I've had for as long as I can remember, such as insomnia, so it may just be part of my personality but I have to believe the brain injuries have made it worse. Additionally, the emotional swings can be some of the worst. I'll cry sometimes and I don't even know why I'm crying. Try explaining that to someone observing who doesn't understand it.

Due to all of those things, I am unable to work. Obviously, I am able to do some things such as chores, write this blog, school work, babysitting, etc. I can't even imagine trying to hold down a permanent job, however. Not the typical 9 - 5. Most days I have to take my chores in increments, working for 10 minutes or so, resting for a few minutes, then working for a few minutes again. Otherwise I end up in worse pain. It's not because I'm lazy - I know it's easy to mistake how I have to handle my time as being lazy. Quite often I just simply do not have the energy to tackle doing things all at once. Most of the time I'm just in too much pain.  I'm also unable to receive disability because the US government assumes I am not disabled simply because I do not have seizures.

So all in all, it's really easy to get depressed at times. My birthday has been especially depressing. I want to work; I don't like having to rely on other people for my needs. Quite frankly, it's frightening to not know if you can support yourself if needed. I've never been in a situation in which I had to financially support myself, thank goodness. I've been fortunate. As a nail blogger, I might add, my birthday was the most depressing thing ever. I got a ton of sales and even credits and I couldn't use any of them because I just can't justify spending the money. It's depressing wanting to buy things for yourself but not being able to when it's not your money you're spending.. or even when it is your money. It's depressing wanting to change that but not knowing how to. Not to mention worrying about what will happen when I'm old. These are just a few of the things I've had on my brain for the past few weeks.. and partly why I haven't been blogging as much... and I wanted to share these thoughts to get them out of my head.

Well, that's a peak at my story and the fun that is my life :D I wanted to share this because it really is important to understand this could happen to anyone: through seizures, drugs, a car accident or other injury.. It sucks but you do learn to live with it. Somehow, you manage and you move on. Obviously, I'm still trying to figure out how to make myself better and stronger so I can some day have the life I want. (Side note: this reminded me - I've been trying to lose weight for the past 3 years. I still weigh about the same as when I started, but I tried on a couple of size M shirts yesterday and they fit. That's down from a XL. Brain  injury also makes it very difficult to lose weight apparently. Quite often, the brain reprograms itself so that people with brain injuries don't know they're full so they just keep eating and eating. In my case, I think some of the brain to body connections just aren't there yet :( With that being said, I need to end this shortly and go exercise...)

I do have a manicure to share with you today. This is what I wore on my birthday and St. Patrick's Day. Yes, I am Irish and in case you didn't know, the whole Irish Luck thing is in reference to our notorious bad luck. It has nothing to do with good luck, quite the opposite! I'm taking a break from the Pokemon nails for awhile. Hope to be back at it soon. For now, here is Zoya Holly and one of my Simple Pleasures polishes and just as a heads up, due to the recent FTC changes I should let you know the link to Zoya Holly is an affiliate link but regardless, all opinions expressed here are my own, blah blah blah blah blah. :P

If you read all of that, thank you! I appreciate it and I hope you'll understand me a little bit better. :) I should also briefly mention that although I have all of the above issues, it doesn't mean I'm mentally retarded or anything like that. My IQ, I have been told, is quite normal (I argue that - I know it's higher than what was said on the test but anyway I'm rambling.) Additionally, this is my perspective. Other people's perceptive may differ :)

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