Archive for October, 2008

27
Oct
08

The Invisible Side of TBI

October 27, 2008

The Invisible Side of TBI

Today I thought it appropriate to talk about the invisible side of TBI. I have been so excited about my efforts in putting together my website and the positive comments I have received, that I have neglected some very critical TBI health practices of pacing my activities and paying attention to my fatigue cues.

I am fortunate that I still have the ability to write well and organize my thoughts well in written form. This has led some professionals to conclude from the very start that there is no way I could possibly have a brain injury. This has also caused people who have known me for a very long time to say things like, “You are doing so well and making so much progress” as if I am now cured of my brain injury.

There are possibly even individuals out there who, after seeing my website and written accomplishments, might have thoughts like “I’m sick and tired of my taxes going to pay for people like this to sit on their duffs and whine and complain about their lives. They just need to get out there and work because they obviously aren’t as bad as they claim.”

To enlighten readers who do not have a brain injury, I will share things about my life that others do not and cannot see.

It took me 30 minutes to buy 2 items from the grocery store because I couldn’t decide what kind of marinade to buy for cooking pork in a crock pot. I kept returning to the aisle with marinades to change my mind for the 3rd, 4th and 5th time. Even though I knew this was not a major decision to warrant so much time, I couldn’t figure out how to get out of this loop of indecisiveness.

I’ve been plagued with nausea, dizziness, ringing in my ears and daily migraines for 4 days. My vision feels like someone has rubbed Vaseline over my eyes; reading glasses only magnify the blurriness and driving is not a safe activity when this happens.

My old self could think, talk and write easily and quickly. My thinking now is much slower. . Logical thought is no longer confident and self-assured. It must be written, examined and physically rearranged. While some say I can still speak in logical thought, I spend so much energy thinking and sorting through my thoughts, I lose track of what actually comes out of my mouth.

When I become fatigued, my thinking slows down and clogs up, much like sludge in a sewer pipe. My writing no longer flows, but becomes labored, taking hours to write a couple of paragraphs that aren’t very well written.

On the other hand, my feelings begin to flow like dangerous currents of white water, capable of drowning my entire being. An overwhelming sense of anxiety and gloom keeps growing in my chest and won’t dissipate. It’s hard for me to see the positive in anything at this point, and these are vulnerable times I become tormented by suicidal impulses.

Though I am dreadfully tired, I am not able to settle down. When I finally fall asleep, my breathing stops and I wake up gasping for air…it’s a condition called Central Sleep Apnea (different from Obstructive Sleep Apnea, though I also have that). My brainstem tells my body it doesn’t need to breathe anymore. Having this difficulty for more than one day tells me I’ve done a horrible job at pacing myself.

—————-

What do I hope to accomplish by sharing this? I hope that caregivers and friends of TBI survivors will –

1) Understand that a TBI survivor can be intelligent and still have brain damage. The brain is our master control center which is responsible for how our entire body functions. Intelligence is only one thing that the brain is responsible for. The kinds of problems a survivor has depend on what areas of the brain were damaged.

Learn more about the brain and what areas are associated with which functions. Click here to go to Centre for Neuro Skills’ page on Brain Functions and Map

2) Understand that deficits become apparent and/or worse when the survivor is fatigued (i.e., lacks the necessary brain chemicals for optimum functioning).

Click here to learn more about TBI and fatigue.

3) Realize that behind every TBI survivor’s accomplishments, are hundreds of invisible battles taking place.

Rather than celebrating the emergence of pieces of one’s old self, celebrate and support the success of finding the right balance which allows one’s strengths to shine through. Instead of saying “You are so good at writing,” say “What do you need in order for this strength of yours to keep shining through? How can I help?”

I share this because I just went through a 4 – 5 day cycle of what I refer to as “brain drain.” What is so ironic is that at a time when I should have been feeling positive over my accomplishments, I was feeling suicidal and wanted to die. I was angry and frustrated over my friends’ attempts to be supportive and encouraging. And I was angry at myself, as well as confused, for feeling this way.

While going through this phase, I realized that even though I take antidepressants and have a psychiatrist and therapist whom I can call when I’m having tough times like this, none of this seems to help during these times. I’ve depleted my brain’s neurochemicals and I have to force myself to rest and force myself to hang in there and not act upon my impulses.

I share these things with you because the suicide rate is so high with TBI survivors. And it may happen during a time when you thought the person was doing so well, so it doesn’t make any sense. Fatigue is one of our invisible enemies. Help us recognize and respect our fatigue cues so we can function better.

© Angela Cramer, 2008

1st Photo: © Angela Cramer, 2008

2nd Photo is the property of Jupiterimages made available through subscription:
© Jupiterimages Corporation, 2008 www.clipart.com

21
Oct
08

Crock Pot Cooking

October 21, 2008

The cooler weather has me thinking about getting out my crock pot to fix some nice, warm beef stew. Thinking about my crock pot, reminds me of the challenges many of us have with cooking.

My tendency to become distracted has made cooking on the stove top dangerous for me. Once while cooking a pot of rice, I went outside to get the mail and then got caught up in a conversation with a neighbor. When I returned to my house and opened the door, I was overwhelmed by billowing smoke and the sound of my fire alarm. It was then that I remembered I had been cooking something. As I made my way to the source of the smoke, I found that the bottom of the pot on the stove had melted to the point where liquid metal was dripping on the burner and stove.

When I tell this story, my non-TBI friends usually say something like “Well that could happen to anybody. I’ve forgotten things like that, too.” I guess this is an attempt to make me feel better, that I’m not as bad as I think I am. What they don’t understand is how frequently things like this happen. I’ve regressed to the point that “out of sight is out of mind.”

The other thing that is different is that my processing speed and ability to problem-solve on the spot is greatly reduced. I turned off the stove and knew I needed to get my dogs and birds outside, but I didn’t know what to do after that. I had to call my advocate and ask her what else I needed to do.

Problems such as this, led me to coming up with strategies:

  • Use alternatives to cooking on the stove top: crock pot, rice cooker, vegetable steamer. The rice cooker automatically shuts off when the rice is done; the vegetable steamer shuts off according to how long you set it to steam the food. If I forget the crock pot meal, I don’t worry about burning the house down.
  • If I do use the stove top to cook, I sit in a chair placed in front of the oven or I set a timer and hold it in my hand until the timer goes off.

Some people have success cooking with the microwave. For me, it’s another case of “out of sight, out of mind.” While I don’t have to worry about burning the house down, I forget that something is in there and find it hours or days later.

Do you have a favorite Crock Pot recipe or cook book? If so, please share your favorites here.

What are some of the challenges you have experienced around Meals and Meal Preparation? I will begin working on putting something together under Everyday Challenges.

© Angela Cramer, 2008

Clipart is the property of Jupiterimages made available through subscription:
© Jupiterimages Corporation, 2008 www.clipart.com

16
Oct
08

Handouts

October 16, 2008printer3

Welcome. I am glad you stopped by for a visit. I wanted to let you know about one of the things I have done and hope to do more of on my website.

Under the section Everyday Challenges, I focus on some of the difficulties with which I’ve struggled. There were times I would figure out or find a strategy for this problem or that problem only to forget it soon afterwards. Or I’d write something down on a piece of paper, and lose the paper. Other times, I’d read or hear some information and wish I could share this with a friend or family member who was trying to be supportive, but they really didn’t understand brain injury.

I put together a handout which can be printed as a way to give other TBI survivors and their caregivers something I wished I had. Actually, I still need these kinds of reminders, so it’s a tool as much for me as for others. I’ve got a special notebook where I keep useful information.

Here are the current subjects which have printable handouts and forms available. These items are located at the end of these pages.

TBI and Fatigue

Tips for Dealing with Medication Challenges

Check these out and let me know what you think!

Angela

© Angela Cramer, 2008

Clipart is the property of Jupiterimages made available through subscription:
© Jupiterimages Corporation, 2008 www.clipart.com

09
Oct
08

Getting to Know Each Other through Our Pets

October 9, 2008

Welcome, Friends!

I am so glad to finally getting my website off the ground. I want to give special thanks to my friends Carrie and Michael, without whose knowledge of this amazing world of the internet, I would never have been able to accomplish what I am attempting to do. I hope my website will provide some education, inspiration and useful ideas to those of you who visit.

I would like to get to know you better and I understand how intimidating that can be until we get to know one another better. I thought a safe way for some of us to get to know one another might be through our pets, who provide so much support and unconditional love. So as a way to begin, I encourage you to visit the following pages on my website:

A. Pets

1. My Cats

2. My Dogs

3. My Birds

Then, write me a message and let us know about the pets in your life and how they have helped you. Send a picture or a story. If you have a service animal, it would be wonderful to hear about that special relationship. If you know of websites related to service animals, therapy animals, etc., I would like to start a page devoted to this. I’m hoping I can combine all of this information so others can learn more about this if they would like.

Looking forward to hearing from you,

Angela

© Angela Cramer, 2008

Photo: © Angela Cramer, 2008




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