Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Friday, October 14, 2011

Fatigue needs a better name

At this point, the biggest obstacle to being back to my old self is probably this ridiculous fatigue. I don't know why it's called fatigue. It sounds so ordinary, and there is nothing ordinary about this type of sheer exhaustion that I feel most of the time. It's as if my arms weigh a thousand pounds each and I try to struggle to carry myself from one activity to another. The smallest task feels like it takes enormous effort. Besides the physical aspects of my fatigue, there is the cognitive side that leaves me feeling in a daze or as I have called it before in a "brain fog" most of the time.  I have tried pushing myself, exercising, building endurance....nothing works. I sleep like crazy and could sleep more. When I don't sleep my crazy needed amount, I feel sick literally. How long will this go on? Nobody knows. How does one overcome this? Nobody knows. I am hoping it's just part of the waiting game. It has improved since coming home, but it is still not anywhere near normal nor where I would like it to be.  
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8 comments:

  1. LindaOctober 14, 2011 at 7:23 PM

    It does takes time, but it will get better.

    Things are better for me now and I can manage much longer, but I can't do it day after day. I am even lasting longer now than I did in the spring.

    Really, try not to let yourself get too tired in the first place. You have to pace yourself. I know that sounds impossible with your little guy, but more frequent short rests really let you last longer in total.

    Please, do be kind to yourself and take shortcuts and do things the "easy way" whenever possible.

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  2. oc1deanOctober 14, 2011 at 9:41 PM

    I don't think anybody knows and being cardiovascularily fit does not help. I did hear that our brain uses 20% of our energy and if we are thinking hard it can use up to 50%. Based on that I think we are probably using 90% of our energy for brain use because we are thinking so hard 100% of the time all day long. There are no rests for our brain except to sleep. And then you should be working on lucid dreaming to help recovery.
    Dean

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  3. ElizabethOctober 15, 2011 at 11:22 AM

    Thanks Dean and Linda!
    I think sometimes I get impatient...wanting to be all better and I'm not yet. Sleeping 16 hours a day is so time consuming too!! Hopefully time is on my side and this will continue to improve.

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  4. AnonymousOctober 15, 2011 at 2:08 PM

    Hi Elizabeth,
    Dean and Linda are right. :) It does take more time than imaginable...sigh! ;)
    Surprisingly, I've had less fatigue with #4 surgery - go figure, cause #4 was very deep in the brain w/LOTS of bleeding.
    Take care & hang in there! :)
    Patti

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  5. Rebecca DuttonNovember 9, 2011 at 12:54 PM

    Don't give up hope. The crushing fatigue you describe gradually went away for me.

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  6. Elizabeth, John, Jack, and LukeNovember 9, 2011 at 4:19 PM

    Thanks Rebecca and Patti,
    I'm always hopeful! Thanks for your words from experience. I can hardly wait for this to be a memory and not a constant reminder that my brain is broken. :)

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  7. AnonymousNovember 14, 2011 at 1:47 PM

    Also Fatigue and Mom-of-Toddler go hand in hand ;)

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  8. Elizabeth, John, Jack, and LukeNovember 14, 2011 at 2:09 PM

    Anonymous,
    Yes, I've heard that many times....except this is a very nasty, abnormal type of fatigue that requires 16hours or more of sleep. Poor Jack hasn't even been to the zoo...an all day outing is too much at this point. Like I said I'm really hoping this improves...its really hard to deal with! :)

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