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Monday, September 8, 2014

Post Concussion Syndrome (PCS) My Story: 3 Months Update

3 Months...wow I cannot believe it myself, it has been over 3 months since my car accident and since getting diagnosed with Post Concussion Syndrome (PCS).

The first time I saw my neurologist he told me that I would recuperate 100% but that it would take time, he had said between 4-6 months.  I really hope that I get better soon, nothing is more frustrating than not been able to do something that was SO easy before.  I miss to be able to multi task, I know some people may hate to multi task but me?  I was good at it and loved to be busy at all times, at work, at home, wherever.  Now? OMG...should we even go there?  I try, trust me, I try to do two things at once and it doesn't last more than a few minutes for me to have a headache, get dizzy and the nausea.

I really don't want to spend this whole blog winning and complaining, but how can I explain the obstacles that you have to go with PCS?  I read a quote from someone that has TBI (Traumatic Brain Injury), and it pretty much said something like this: "We look fine, can perform normal tasks, and are intelligent and highly educate.  Our brains, that you cannot see are injured, and affect us in ways you will never be able to relate to unless you have a TBI, please understand this..." It is so true, I have had family and friends tell me that I look great, and pretty much telling me that I don't look sick and should just suck it up.  Let me tell you, no one is dying to get better more than me, I wish I could go for a run and clear my mind, or just pick up a book are just dive in for hours instead of minutes, or to be able to sit with my family and watch a whole entire movie without seeing the TV move around.

But it has gotten a little better, it's not everyday that I have really bad headaches and I love that I am able to drive, I feel confident and happy that I am independent at something in my life.
You know what is hard too?  Is to depend on someone and ask for help.  Am I the only one that feels that way?  I feel horrible to ask for more help from my husband and my parents, they are my support, but they have done so much for me already that I feel like a bad person asking for more of them.  I have tears in my eyes as I am typing this, it's hard and you feel useless because you cannot do anything about it.  You can do, you can rest and take it easy and do 1 thing at a time... :(

I have seen my neurologist twice since the accident and I am following up with him this week, also I will be seeing an eye specialist for my 6th nerve, will be following up with my PCP by the end of the month and in a couple weeks I will be seeing a therapist for the second time.  I really didn't see the point of a therapist, but now I understand how nice is to have someone that understands and guides you to your goal.  If you don't see a therapist because you don't think it's useful, please do yourself the favor and go, your life is precious and fight for it, every way possible.

I think that I could spend the whole day typing about my PCS, but I am going to stop.  But before I go please understand that you are not alone and hopefully we will get better and remember this phase of our lives a little sour candy that it ends eventually.

Hoping that someone out there can take comfort to know that you are not alone and together we can help each other.  Let me know if you have PCS or if you know someone that has some kind of TBI.

Going to try to take a nap now...rest is important but it's also the hardest thing to do.

XOXO,

Nelia


7 comments:

  1. Hi, I can relate very much to your frustrations. I wrote a little pocket guide called Tell Me This: Encouragement & Hope after Brain Injury. It is $5
    www.lapublishing.com/concussion-recovery-sports-athlete/
    I hope you feel better, longer, soon. Sending you buckets of compassion & patience~Catz LeBlanc

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  2. Thank you, I'll check it out...today is definitely NOT a good day...frustrating

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  3. I appreciate your frustrations 100%, having been there myself. Just know that it WILL GET BETTER. Your brain is healing and it takes time. Hang in there!

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    1. Thank You...it's actually nice to know that I'm not the only one and that we can share our stories to help others.

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  4. There are folks like us all over the world. Sometimes when I feel really overwhelmed with how hard having a brain not working like it used to, I think there are others, right now dealing with this insane challenge, we are doing the best we can, often misunderstood yet this is our life in this moment and i think i want them to know that i am cheering for them too, this is REALLY hard, dealing with the symptoms and people not getting it. It gets better wicked slowly so take LOTS of patience pills everyday and get doses of endorphins from laughing or beautiful flowers or watching team handball or whatever brings you some joy. It is extremely important to have some positive experiences even if they are brief. The negativity is very powerful to discourage you from the progress you are making. Keeping a journal is helpful for this. You can look back & see OH! LOOK! on xyz day I was able to take a nap for 20 min or I was able to read a book I enjoy or I was able to take a 10 min walk without feeling dizzy. Every increment of positive when you are in brain recovery is about twenty times more important than before your injury (when you were "normal") Yes, we are out here cheering for you!
    Catz LeBlanc

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    1. Hi Catz, THANK YOU, your words means so much. At the beginning I didn't know how many people were suffering from the same thing. Getting misunderstood is so true, I have got to a point where I can't lose sleep or be angry if someone doesn't understand what I am going thru. I am appreciating life a lot more now, everything is brighter and more beautiful. We have each other to support and cheer on each other. Thanks again

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  5. Landon I am going to check your website out and will let you know if you can help me. Can I share it on twitter? I have connect with lots of people that have PCS...let me know?
    THANK YOU!

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