[shezbut]

It has been awhile since I've posted in here. I have felt pretty well accustomed to the changes I've made in life. One pretty big discovery I've run into is the realization that my brain still has those limits. When I push the limits, the PCS comes back with a vengeance!

My aunt was very ill, and I'd gotten hit by a snowplow as I was coming home one day. My brain doesn't work as fast as it should, for the past 4-5 years, due to my brain surgery & TBI. Therefore, it took my brain too long to process the information ~ that the snowplow didn't see me. I should have backed up, honked my horn, or yelled, but I didn't. Those thoughts didn't even enter my mind ~ and the insurance companies put me to be 25% responsible for the damage to my car. My brain just didn't work fast enough. That was hard for me to accept.

Last week, my doctor changed the times of med intake. I got all screwed up. A couple of days of insomnia quickly became 1 week (nights= 3 hrs of sleep). My anxiety shot sky high. I couldn't figure anything out ~ confused by everything. I kept calling the nurse, to try to fix my problem. It didn't work. On Monday, my nurse came (to set up my week of medications) and talked with me for a while. I was sure that I hadn't ever taken this med that the doctor's nurse insisted that I was on. My nurse took it more slowly.

She explained that I have been on this med (2 per day) since November. Before I could get my thoughts together, she went on to explain that what I was going through is normal. My brain is too busy. All of the stress. A couple of days of poor sleep, and anxiety starts spinning in a relentless circle. My nurse reminded me of little things that have been happening in the last couple of months. She said that what I'd gone through was "normal" for me. That I was okay, but my brain just can't handle all of it. I am at a point where it cannot take any more. It will get better with some time. And acceptance that I can't remember.

Thank goodness that I have a nurse that I can rely upon to get me through these confusing times in life. I am very thankful that I can depend on her being there to help me through. I still have to stop kicking myself, for forgetting everything and just move on. Incidents like these will probably continue at different times of life. I just need to remember that it isn't over. These times will recur, but I will make it through anyway....

Shez

[Mark in Idaho]

shezbut,

Sorry to hear of your bad experience with the snow plow. Even non-PCS people have times where their brain freezes up. The insurance companies were nuts.

One thing I learned is to plan a lesser involved day and task. Just because you think you can doesn't mean you should. We tend to over-estimate our abilities, especially early on before we have learned more work-arounds, accommodations and other coping strategies.

There are many physical activities that teach the skills we need.

When rock climbing, one always has a plan in case one fails. It is called a safety rope. They are not used to climb except in rare situations. But they are always used as a safety system. The time spend setting up safety systems is far more than the time needed for the climb. But, the lowered stress from knowing there is a good safety plan makes the climb much more manageable.

I used to move heavy safes. I learned early on that I always needed an escape. I did not need 1,000 to 2,000 pounds falling on me. If it was a dead lift that required two people to make the lift, it was necessary to have at least three people lifting. If one misstepped, the others could handle the load. With only two, if one misstepped, the other would get hurt because he could not handle the load alone.

Consider it Murphy's Law for PCS. If we slow down, take it easier, we get just as much done because we do not have to repeat ourselves as often.

You are very fortunate to have a nurse who understands. She is a gift that very few of us have.

btw, It sounds like you could benefit from some journaling. In a journal you could note the nurse's instructions, your medication schedule, your failures, how you can learn from your failures, and most importantly, your successes. Even come observations about your snowplow incident and claim.

Often, we enter a conflict unprepared to defend ourselves. In hind-sight, you may have been able to comment, "I was waiting for him to go around me. By the time I realized he did not see me, it was too late to do anything. Was I supposed to be able to read his mind?"

When I was 16 and newly licensed, I had a head on accident. My 4th concussion btw. I was considered at fault because the ink was still drying on my license. It was a one lane bridge on a blind corner. Later, I realized that I needed to stick up for myself. It became obvious that the other guy was speeding and had an earlier view of my car due to his position in the blind curve. My inexperience and self-doubt meant I had 6 years of higher insurance rates.

With PCS, it is often helpful to wait to start to decide what happened. As we wait, the other parts of the memory of the event may start to fall in place. If we make up our minds too soon, we end up doubting ourselves far too much.

Learning to reconstruct memories is a valuable skill for PCS. We can't learn the skill over-night nor can we reconstruct the memory over-night. It sometimes helps to start a note about the event. Then, over time, we can add details to the notes. Eventually, we can reconstruct a large part of the 'forgotten' event. We did not necessarily forget what happened. We just got the details misplaced and out of order.

Been there, done that, learned to do better.

My best to you.

[shezbut]

Hi Mark,

I could have sworn that the snowplow would be found to be at fault! I sat in the driveway of the apartment building, watching him back up. I could see his side mirrors, so figured that meant that he could see me. I patiently waited for the snowplow to finish his work, for about 5 minutes. He backed up, and just kept on coming. A second or two before impact, I finally realized that he wasn't going to stop. I put the gear into reverse, and put my foot on the gas pedal. Too late ~ he smashed into the drivers window and mirror. It was unbelieveably cold in Mn, when this occurred. And I only have liability insurance. Boy, did that suck!

Yeah, I do need to work on accepting realistic limits. I have a thing for pushing myself too hard & then emotionally breaking down when I can't meet my expectations.

My family still hasn't accepted my brain injury either. Just last week I sent an e-mail to my mom, telling her how overwhelmed I was with all of these intense emotions. My sick aunt, struggling to be the best mom I can be, etc. Her response trivialized my emotional reaction to my aunt's health. Kin of , "She's fine, and will be out of the hospital in a few weeks. So, what's the matter?" I just hate that! Adding my week of major insomnia, lead to huge problems for me. My world was just a wreck!

I'm trying to get my life back together again, but it's not easy at all!

Thanks a lot for responding, Mark. I appreciate it!

Shez

[BeccaP]

That stinks about the snowplow. Ouch! Glad you didn't get hurt.

It is so hard to accept the limitations, I struggle with the same problem and frustrations. I don't think most people in our lives can understand the emotional (and physical) stuff that goes with the brain injury. I wouldn't have without experiencing it. I am different, I can feel it and bump up against it all the time, but it is hard to explain to others when I appear so normal.

I've found that most people (close to me, I wouldn't expect it of others) don't really want to make the effort it would take to understand, they are busy with their own issues and problems. I know they love and care about me and that has to be enough. I think we all tend to filter what we're being told through our own experiences, but it's really annoying when they trivialize what you're dealing with! I don't try to explain much anymore, just am honest about what I can and can't do, and retreat as necessary.

I drive very carefully but always worry about what could happen if I have to respond or think fast, I'm not so good at that either. I'm learning to function within the limits of my reality too, and it isn't fun when I bump against the edges. I like all your practical advice on that, Mark.

I appreciated your post and your positivity! I'm happy for you that you have such a great nurse to help you, what a blessing.

Best wishes getting things back together, you'll get there.

Take care,

Becca

[shezbut]

[QUOTE=BeccaP;745797]It is so hard to accept the limitations, I struggle with the same problem and frustrations. I don't think most people in our lives can understand the emotional (and physical) stuff that goes with the brain injury. I wouldn't have without experiencing it. I am different, I can feel it and bump up against it all the time, but it is hard to explain to others when I appear so normal.

I've found that most people (close to me, I wouldn't expect it of others) don't really want to make the effort it would take to understand, they are busy with their own issues and problems. I know they love and care about me and that has to be enough. I think we all tend to filter what we're being told through our own experiences, but it's really annoying when they trivialize what you're dealing with! I don't try to explain much anymore, just am honest about what I can and can't do, and retreat as necessary.

BeccaP,

Unfortunately, most people I deal with regularly don't understand when (or why) I need down levels. I become SO overwhelmed, I cannot think at all.

I do try hard to avoid getting into situations like these, and exercise regularly to work through stress. Even still, my limits are lower than most others.

My boyfriend, family, and doctors seem to think that I ought to bounce right back once the stress is gone. It isn't that easy for me. It takes some time for me to adjust and accept.

Thankfully, there are other people in this world that understand how tumultuous the world feels to me in those times. I just hate it though!

Thanks for posting, BeccaP!

[Concussed Scientist]

Boy, did BeccaP hit the mark with her post:
People really can't understand, and I wouldn't just say most people in our lives either. I think "most people can't understand" period. Becca gets the reason right too. "we all tend to filter what we're being told through our own experiences". Yes, we do and yes, it is "really annoying when they trivialize what you're dealing with".

Becca I couldn't agree with your post more. Thanks for putting it so exactly and also thanks for trying to look on the positive side and telling us how you're dealing with the situation that a lot of us find ourselves in.

CS

Originally Posted by BeccaP

It is so hard to accept the limitations, I struggle with the same problem and frustrations. I don't think most people in our lives can understand the emotional (and physical) stuff that goes with the brain injury. I wouldn't have without experiencing it. I am different, I can feel it and bump up against it all the time, but it is hard to explain to others when I appear so normal.

I've found that most people (close to me, I wouldn't expect it of others) don't really want to make the effort it would take to understand, they are busy with their own issues and problems. I know they love and care about me and that has to be enough. I think we all tend to filter what we're being told through our own experiences, but it's really annoying when they trivialize what you're dealing with! I don't try to explain much anymore, just am honest about what I can and can't do, and retreat as necessary.

Becca

[Mark in Idaho]

shezbut,

Something your family and DOCTOR need to understand is very simple. When one with PCS has a stress overload and crash, it is like they fell into a hole. Recognizing the hole is not enough. They now need to fill the hole so they can get out.

To put it another way, let's say on a scale of 0 to 10, normal not-crashing PCS is a 5. We get overloaded and crash to a 0 or 1. Getting free of the triggers or stress still leaves us at 0 or 1. We now need to regain the energy and composure to get back to 5. Others think we should be able to automatically return to 5 but that just is not the case.

To make matters worse, we occasionally have days at 9 or 10. These are our high-function days. They are fabulous but usually rare or at least short lived. But our family has now set 9 or 10 as our NORMAL. They do not realize all of the factors that combine to create the perfect storm of high functioning at 9 or 10. Sometimes, WE don't even have an idea why we have such good days.

When trying to relate these ideas to family, friends and ignorant doctors, it helps to create these analogies.

I have lots of different ways to get others to understand PCS. When they finally get it, they are often shocked by how intense and invasive PCS symptoms can be. My wife spent hours talking with our estranged daughter explaining my PCS symptoms as they compare to her bosses daughter who has PCS. My daughter is finally starting to understand, it has only taken 10 years.

My best to all.