During this holiday weekend, my husband & I were invited to participate in a simple get-together with family in a large park (amidst the holiday crowds), but had to decline.
Under 'typical' circumstances, going to a park for a family outing would be fun & pleasant, but because of brain damage from innumerable bleeds & 4 surgeries, crowds are a very uncomfortable setting for me & am sure to many survivors in our community.
This is a good description of brain overload and why I and many others with brain injury don't do well in crowds...
http://www.tbiguide.com/getoverloaded.html
Patti G,
I completely understand how you feel. I took my daughter to shop on Black Friday. She struggled so much that we gave up and got her home. Now I realize that noise and crowded places are very difficult for my daughter as well. She’s 10 and has had a massive bleed that require emergency craniotomy and two additional craniotomies.
Even if your relatives don’t understand, those of us who live with people who have brain injuries can understand.
Best wishes,
Tina
Thanks, Tina.
Fortunately I'm blessed with an understanding family & yes! our community here. :)
All the best to you, your daughter & family.
I know how you feel. Shortly after my crani in May of 2011, my sister threw a birthday party for her 2 daughters whose birthdays are both in June. The party was at a large park with a huge duck pond. I wanted to go but (also I was 7 months pregnant) the thought of traveling downstairs from the second floor made me sleepy. The realization it was a 1 hour drive made my hip hurt. The fact that my sisters boyfriends entire family would be there made me sweat. I couldn't handle the stress at all. My sister didn't understand at all. She said I was milking the fact that I had a major stroke to get out of the party. She said I was exaggerating the lack of use in my left side so I wouldn't have to go to the party. She made me feel so horrible! I lost my sister...I refuse to talk to her now. People are so....they just don't want to make room to even try to understand how it could possibly be for avmers. Just because you can't see every scar doesn't make the reality a non-reality, if that makes any sense at all. I gave up on her and I gave up on trying to make excuses for people like her. People like that are better off getting their mouths stapled shut.
Hi kristi,
Yeah, there are some folks who just don't get it or won't try to. We have enough on our plates, yet I hope in time your sister will have a change of heart.
As frustrating, EXHAUSTING & limiting as brain overload is, I know it's for real, my family knows it's for real & I'm aware there are times I have to (& do) sit it out & not participate during events I know will extend beyond my limitations. This recent invitation was only a 'reminder.'
Thank heavens for our 'family' here! :)
Take care & hope you're having a good weekend.
Hi Patti - I totally hear ya - whereas in my former life, I was quite the "social animal", not that I'm anti-social now, but now I decline stuff simply because I need to because of certain limitations.
Of course, we have many similarities, and I'm sure that we have many differences and/or many add-ons - good times! not - but it's a great opportunity to re-define "fun" while we're probably re-defining most everything else =)
I'm okay with it now, and it took me some time; I know it's going to take some time for others as well, if it happens at all.
Hi again - I just read the article - although I prefer the "super-marts", I go in off-peak days and off-peak times - I definitely avoid weekends with crowds and screaming kids, etc.
However, the cereal example brought to mind real live examples of deoderant and mascara - I never knew how many options that there were =( I actually had to ask someone for help with my mascara quandry.
Hi just julie,
The cereal example made me think of how overwhelming too many choices or options is for me too - eek! :0
Hi Ninibeth,
Yes, it's been happening to me too for a long time since diagnosis, especially since developing more deficits. Crowds, too much activities, etc. wipes me out & creates anxiety & cognitive difficulties increase.
I was happy to have found the article & to share with others. While it's not a new topic & we as patients know it's REAL, it's nice to find an article of validation by a HCP. :)
Dearest Patti! It is so hard for us not to be able to do what others think are simple outings. Thank you for sending this Getting Overlood to us....It made me feel that I am not alone with this issue! And that if it wasn't for this Network, I would think I was the only person who has this issue! Hugs, dear Friend!
Thanks for posting this Patti. This is exactly how I feel and I know how many of us here feel. My family understands but that doesn't mean they still don't get annoyed if we can't do certain things because of mommy's brain injury. It's frustrating for them too. What is the name of the book that this comes from? It sounds very interesting.
Patti, thanks for posting your experience. I also have to limit my family functions and avoid crowds. The neuropsychologist even went as far as to write in his report that my brain-induced introversion made me disabled as a priest. It was big news to me that I was of such celebrity status that I had to “work the crowd” as a part of my job. I could just scream. George
Good morning Louisa,
Yes, I 'thank' my lucky stars ;) for this community in many ways! :)
Initially when I had my first surgery in 1988, I had NO clue why I couldn't do 'usual' tasks, activities, etc. without feeling EXHAUSTED, &/or overwhelmed.
NOPE, you're not alone my friend!
Hugs back at ya!
Hi Trish,
I was happy to find this 'validation' & hope it will help others realize they have cause for feeling the way they do & it is REAL.
My husband 'understands' & is sensitive to my brain-drain (& am sure has his moments of annoyance!;), yet he too appreciated the article.
If you scroll down to the bottom of the article page, it appears you can download the complete brain injury book.
Morning George,
Always happy to share interesting or what I feel is helpful with our 'family' here.
I'll write you a private message.
Take care my friend.
Thank you, thank you, THANK YOU for this article. I've tried to explain this to my husband, but he doesn't quite get it. He got a little upset a few weeks ago when I put my hands over my ears. He was talking on my left, my son was talking on my right and the TV was blaring in front of me. (I felt like screaming!) I use cotton balls to muffle sound alot.
Hi Karen,
You're so welcome & I hope this also helps your family better 'understand' & to possibly accommodate you with the changes in your life & as a family.
Good idea to use the cotton balls. :)
Take care.
Thank you for sharing this Patty! YOU are a BLESSING to so many !!!
/Michele
You are so kind, Michele! :)
Hoping you're doing well.
Karen,
I totally understand, I wish screaming was a more accepted practice in our society. :)
Nicole