Wednesday, November 19, 2014

Scared, Helpless, and even more helplessness

It's been a while since I posted. The past 3 months have come and gone so fast, yet, sometimes time drag so slow.  I have meant to write much earlier than this, but I rarely had the time or energy to do so.

I have spent the last 18 months sharing about my physical recovery from brainstem surgery. I have done very well.  My handwriting and poor fine motor skills in both hands are still a struggle, but my handwriting has really improved the past few months.   I deal with pretty severe (loud) tinnitus, that I chose not to talk about much, because focusing on it, even for just a minute, makes me feel so miserable and overwhelmed. The breathing issues gets really frustrating, but I manage. My legs still feel a bit numb and asleep sometimes, but not enough for it to be an issue.  I am often very dizzy and very tired but the vertigo does not last all day and night like before surgery.  It is worse when I am tired, physically, or mentally, or both.  All in all, physically, i have recovered amazingly!

Mentally, has been more and more difficult.  I have been so busy getting my body back to "normal", that I have put aside the mental effects of brain bleeds and surgery.  I started having memory loss, confusion, difficulty processing, being very bad at understanding any directions or instructions, and understanding things wrong, before my surgery.  The surgery has made this worse, but it is only very bad when I am tired, sick, or stressed.

I have not really talked about this before, because I was so focused on the physical side of things. The cognitive side kinda was pushed to the side.  I also have not talked much about it because I am afraid.

I have seen a worsening of all these things a few months ago. Its as if, as my body got stronger, it sucked some of my mental abilities. Ah! As if I was made to be well in one or the other. As if my brain, or whatever cause this, does not have enough "juice"  to make both function the way they should at the same time.

I have experienced such confusion that I pull over on the side of the road. I also see things. I see deer mostly haha I see deer on roof top, in cars, in places they should not be. Not sure what it is about the deer.   I saw chewbacca yesterday driving a car.  Yes, please do laugh with me, please.

He is looking pretty sexy with that snow. He says Hi.  He didnt wave, I just saw him driving casually.

That aside, I have had a hard time going thru this "alone". I know I dont have to be alone...but sharing my fears and what they can mean is overwhelming to me.   Its very very difficult to work so hard and want to remember things so bad, or understand someone's words or processing what they are saying, or not mixing up messages and meanings. Its is so hard to give my all, and it not being enough. Its nobody's fault... it is just so hurtful I am the cause of misunderstanding among other things. I get so confused. I feel like I should just sit in a chair all day, not talk to anyone, not try to do anything...

It doesnt matter if someone know me or love me or understand me... It is hard for anybody to hear me talk just fine, live a life that appears normal, yet express that I am having such a "hard time". A "hard time" that they cant see at all. People dont think in my head. People dont hear what I hear. The noise that makes it hard to pay attention sometimes, mixed with the difficulty to process something.  It creates stress, and stress makes everything worse.

I need help.    I want help, but feel so helpless, because I dont see how this would get better. I dont know what "help" can give me.

I saw my neurologist to talk about this. He was clueless. He was clueless the first day I met him!  I need to find another one.  He referred me to a Neuropsychologist for testing .  The referral took forever so after one month, I went to see my Doctor and he referred me to one.  My testing is December 1st.

I am so drained from trying so darn hard. I cant handle any stress at all. I need help that I am getting to understand is impossible to get.  I feel as if my brain is a computer with little memory or power to it, and it works okay to perform basic tasks, but when you open a program that is a big larger, it slows down the computer... than open one or two more programs, and it just works so slow that no matter how "good" you are at computers, there is no use. It finally crashes and you end up losing valuable information. In my case, its forgetting something important, or understanding a conversation all wrong. If I am tired, sick, or stress, I may as well be shut down....

I try to reach out for help. I tell people all the time how this or that is difficult for me. I look normal... I act normal.. (i think haha)... I talk intelligently (I hope..) so there is really nothing that can "back me up" on how much I struggle.

Its a vicious cycle.. because the harder time I am having, the more stress it creates, and the more stress it creates, the harder time I have. Its to the point where I just feel like I am running on one bar or "connection" and its about to go dark.

You know, I have over 1000 views every day on this blog. I am so thankful that many people find information thru this. I never wrote anything this personal before, so I can understand why I dont receive comment, or encouragement, or support.  I created this to support others... along with facebook support pages... but I find myself feeling very alone.  It would make my day to read a few comments... to be encouraged...

Anyway, I have to go back to "physical life" now. That's so easy to do compared to just deal with this "head" full of noises and confusions....


  1. You are an amazing person to share all of this. I know a lot of people couldn't do that. It gives others hope and they know they are not alone in their fight to get better. I have not experienced any of your symptoms or that of others who have gone through this. I have only watched it all play out from a mother's perspective. There have been some very scary moments, happy moments, helpless moments, depressing moments, moments of disbelief, joyous moments, times when I was angry thinking that she was not trying hard enough and with all of these emotions just coming from a family member, I cannot imagine what she was feeling like. You have survived a very traumatic time in your life as has my daughter. All of you who have been struck with this awful disease are fighters and are very strong individuals. Please get the help of the neuropsychologist. My daughter is 18 months out from surgery and has seen a neuropsychologist several times and has had 2 sets of neuropsych testing. There has been much improvement from 6 months after the surgery/stroke/hemorrhage, etc. We also have an amazing team of speech therapists who specialize in memory, cognition, brain injury and my daughter is still going to therapy a few times a month and probably will continue for a while. Don't give up on yourself and lean on your family. They wouldn't want it any other way. If you lived closer to us I would get you in with our speech therapy lady. She is really good. Hang in there. You're an amazing individual!

    1. Thank you so so much for your kind words and encouragement. You have no ideas how much I needed this! I would give you a hug if I could :) I have had a hard time finding a neuropsychologist that will see me. Many will do the testing, as I have found one, but none that I called so far take new patients. I am hoping to get a referral from the one that will do the testing.
      I know I should of gone thru therapy when I got back from Phoenix. I felt so happy and emotionally perfect... I didnt realise that mentally would be a struggle. I was dealing with so much physically and was focus on that only. I just wanted to walk again, talk fine again, do this, do that.
      I am hoping that I receive the help that I need soon!
      Your daughter is blessed to have you. My family is so far away. Its only my husband, I and the kids here... nobody to help ease the burden sometimes. We have to do it all on our own. We manage well tho and I dont complain.. it would just be so nice to be able to share my thoughts over a cup of coffee with someone that truly love me!
      Thank you again for everything