Monthly Archives: August 2011

Mean Reds

You know those days when you’ve got the mean reds…. the blues are because you’re getting fat or maybe it’s been raining too long.   You’re sad, that’s all.   But the mean reds are horrible.   You’re afraid and you sweat like hell, but you don’t know what you’re afraid of.   Except something bad is going to happen, only you don’t know what it is.   ~Truman Capote, Breakfast at Tiffany’s, 1958, spoken by the character Holly Golightly

The mean reds in my head are fueled by anxiety. . . anxiety makes me do crazy things.  Disclaimer:  if you happen to do any of the following, I do not mean to imply that you are also crazy.  You might be, but that’s really none of my business.

I obsesses over little things.  I lay in bed at night and I feel pressured to write down the things I need to do, not like your normal “to do list” but things like “clean up” and “supper tomorrow.”  It’s highly unlikely that I’ll get up the next morning and not notice the dirty dishes or laundry or the sticky spot on kit floor that I step on every single time, because I’ve been thinking about them all day!!  Or that I’ll forget we need to eat when supper time rolls around.  Alright, that was ONE time.  Maybe two.  I imagine one of the boys would eventually point out they haven’t eaten and remind me, although they are both capable of finding some form of nourishment.  They know how to make toast and frozen pizza and will surely survive the night. 

I compulsively check my calendar and notes on my phones. . . like someone added something when I wasn’t looking?  Maybe I  need an assistant. 

I finish a task and immediately start thinking about when I will need to do it again.

I. MUST. MAKE. LISTS.  I have even gone so far as to include “check other to-do list” on my list.

I wish I could crawl out of my skin because I get that all-hyped-up-on-a-12-pack-of-Coke-and-a-carton-of-cigarettes feeling. 

Gosh, it’s fun being me!


Vision Problems Associated With Brain Injuries

http://www.braininjuries.org/

A little more information on TBI and related vision problems.


Slow and Steady Wins the Race

I hope!
I wanted to take a minute here to review the goals I set last month.

1. Develop a binder and emergency plan for Sean.  Almost done!
 
2. Become diligent at using Sean’s schedule.  I am!!  Sean, not so much.  However, we are now having two or three consistent days a week and that is a BIG improvement!  Dr. CV has him filling out a binder each day with his schedule and reflecting on it each evening.
3. Incoporate a “morning meeting” into each day.  Yes!  This one has been a lifesaver.  Sean has been able to ask about his MEB, appointments, etc., and then we table it until the next meeting so we can stop having the obsessive conversations.  It’s also great when I need him to do something, or if we have paperwork to do. 
 
4. Eat supper together daily at the table.  Um. . . . We eat supper.  A couple times may have been at the table.
 
5. Walk the dog two times a day.  Just go to #6.
 
6. Do an activity for myself weekly.  Yes!  I have been able to do at least one activity, and in a couple cases, more.  I found I like doing it purposely vs. haphazardly as I appreciate it more.

Lost & Found: What Brain Injury Survivors Want You to Know

Lost & Found: What Brain Injury Survivors Want You to Know

Fantastic!  From Brainline.org

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.


I Won’t Let Go

This song speaks to me now.  I can barely get through it without crying.  It completely describes what I want in my heart for Sean. 

I Won’t Let Go
~Rascal Flatts

It’s like a storm
That cuts a path
It breaks your will
It feels like that
You think you’re lost
But you’re not lost on your own,
You’re not alone

I will stand by you,
I will help you through
When you’ve done all you can do
and you can’t cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won’t let go

It hurts my heart to see you cry
I know its dark this part of life
Oh it find us all and we’re to small
to stop the rain
Oh but when it rains

I will stand by you,
I will help you through
When you’ve done all you can do
and you can’t cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won’t let you fall

Don’t be afraid to fall
I’m right here to catch you
I won’t let you down
It won’t get you down
You’re gonna make it
I know you can make it

Cause I will stand by you,
I will help you through
When you’ve done all you can do
and you can’t cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won’t let go
Oh I’m gonna hold you
and I won’t let go
Won’t let you go
No I won’t


Bring it on Home

This is a song that spoke to me while Sean was deployed.  Haven’t heard it in a long time, but it was on the radio last week and brought so many memories rushing back, filling my eyes with tears.

Bring it on Home
~Little Big Town

You got someone here wants to make it alright
Someone who loves you more than life right here
You got willing arms that’ll hold you tight
A hand to lead you on through the night right here
I know your heart can get all tangled up inside
But don’t you keep it to yourself

[Chorus:]

When your long day is over
And you can barely drag your feet
The weight of the world is on your shoulders
I know what you need
Bring it on home to me

You know I know you like the back of my hand
But did you know I’m gonna do all that I can right here
I’m gonna lie with you till you fall asleep
When the morning comes I’m still gonna be right here (yes I am)
So take your worries and just drop them at the door
Baby leave it all behind

[Chorus]

Baby let me be your safe harbor
Don’t let the water come and carry you away

[Chorus]

You got someone here wants to make it alright
Someone who loves you more than life right here