Glioblastoma and Brain Fatigue

I have a couple of things to share today that will hopefully help others understand Mike a little better.  These things are not something that I wrote, but things I came across from other brain cancer warriors.  People don’t seem to understand why we don’t go to Sunday morning church often anymore, out to restaurants or friendly get togethers, and why we try to limit visits to short visits.  Too much stimulation is so hard on him.  If you are around our house, you will notice that I try to keep Kenzie busy with a lot of crafts and outside play when the weather is nice, and that the teenagers spend a lot of time in their rooms –  this is me adapting the only way I know how to give Mike the silence that he needs.  Even the smallest disagreement between the kids, or even them interacting, having a lively conversation and giggling, or simply the noise of opening the fridge, getting a plate, going into the silverware drawer, and opening a can of soda is too much for his brain.  It is hard for a teenager to get scolded for “making too much noise” when they are just getting a snack.  We adapt, but its been a learning process for all of us.  We are all trying to work together to make the house as quiet as possible for Mike during those times that he needs quite.   He feels a lot of pressure to be “on” when people visit, so too many hours in a day, or too many days in a row are hard on him. Having visitors also brings Kenzie’s energy and excitement level up, and that is a stress to Mike.  Its so hard to explain as this is new territory for us.  We aren’t saying we don’t want visitors, we are just saying that we have to go about having visitors in a new way and we are having to communicate exactly what Mike needs and we hope that everyone understands and doesn’t get offended.  For him, it isn’t just a matter of getting a good night of sleep to recover from a busy day.  He often ends up in bed for days straight if he has too much stimulation. He can usually enjoy a good 4-6 hours awake and then his brain starts to get fuzzy.  I’m finding that I have to be his advocate in so many new ways.  So, onto the info that I found and want to share…..The rest of this post is in another brain cancer warriors words, but it really is a great verbalization of what Mike is going through.
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“Brain Fatigue vs Physical Fatigue

Our brains get tired!!!! For us with brain tumors, and the damage from the tumor and the treatment, it makes it VERY difficult to do the normal “thinking”. “Normal” people THINK about things easily. For us brain tumor patients, it is like a mental marathon just thinking about what to buy at the grocery store! So it is our brain getting over stimulated that causes us to break down and be fatigued. Our brains just shut down!

After keeping a journal of my good and bad days, I realized that my bad days, were I feel like a veggie, is the day after I have a busy and noisy day! My brain needs to recover. Like a person after running a marathon race needs to take a break to recover their muscles. We brain tumor fighters need to recover from over working our brains! We will lay on the couch like we are warn out, because out brains have shut down!!!!

SO don’t be surprised if your loved one is still all fatigued and tired, even thought the radiation and chemo is over! They will be that way the rest of their life! It is “brain fatigue”, not physical fatigue from chemo. The KEY is to learn how to work around it!!! I have realized I have about 4 hours a day of “sharp” brain function, then it goes down hill fast. So if I want to be perky and thinking straight for a dinner event some evening, I need to make sure I have a VERY quiet relaxed day before that evening, so I can have the perky energy and brain function to talk and be part of the event. If I go grocery shopping (which takes a lot of thinking and background noises), then I would be a veggie that night at the event.

My hardest days are the weekends when my two boys and husband are at home with me all day on Saturday and Sunday. I LOVE being with them and having fun, but the busy sounds of talking, doing, interacting, thinking, noises from my boys, etc. WEARS my brain down. Monday is recovery day for me! I NEED hours of complete silence each day! So please you caregivers understand, that your loved one needs some QUIET time each day to give their brains rest!!! We are not “normal” anymore! We will not get back to “normal”.

Sometimes I need to “do” something in the morning, like go to a kids event at school. If I do, I need to come home after the event, and have COMPLETE SILENCE for a few hours to recover form the over stimulation in my brain, so that later that day when my husband gets home from work and boys from school, I can be functioning again that evening. Like I said, I think many patients (or caregivers) don’t realize that our brains are fragile!!!! Treat them gently!!! We can only handle so much “thinking” in a day. ANY background sounds, over stimulation, big groups of people talking, etc. is way hard on us!!!

In the past I often reacted to my “over stimulation” by depression, wanting to be alone, not wanting to interact with other people. But now I realize that I fell into the fatigue and feeling bad, because I was “allowing” myself to be over stimulated too much! Now I have learned to work with what I’ve got, and old warn down brain. So by giving me my QUIET time needed, my brain and body can work MUCH more perky and clear, the hours I really need it.

–This was posted in a gbm support group by Cheryl Broyles

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My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

If I seem “stuck,” my brain may be stuck in the processing of information.  (It may also be an indication that I need to take a break.)

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

–Author Unknown


2 responses to “Glioblastoma and Brain Fatigue

  • Symyra Holloway

    Wow! Thanks so much for this education Shauna. I’d just asked Thomas had he heard anything about Mike. I told him you hadn’t wrote any updates in a while. I kinda look forward to your updates for a lot of reasons but for one, they are so inspiring. Even on your feeling down and confused ones I find inspiration in them because I know that God is still in the healing, strengthening, providing, and comforting business every single time you’er able to sit down and write down your thoghts. No matter what you and your family are going through you all are still one of the strongest families I’ve met and I know through all of our prayers you all will remain that way in spite of! Always know the Holloways are in prayer with you and for you and the family. May God continue to bless our friend, Mike. Amen

    Sent via the Samsung GALAXY S®4 Active™, an AT&T 4G LTE smartphone

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