Hi Mark
i'm finding the hermit-like lifestyle is the way to go. right now its the only option for me. I've been worried that at 4 months post injury i should be doing a lot more. The neurologist keeps saying 6 months for recovery.
it does seem to help if im able to string together some good days of being quiet, resting and sleeping as needed.
i also notice that too much stimulation does set me back too. it is like a worsening of symptoms.
we are blessed to have a mountain cabin too and have been there almost every weekend since the accident. it's peaceful and quiet there and lets me rest. no garbage trucks, sirens or lawnmowers!
i really like your idea of having projects to work on with no time pressure. I can see how this would help me with exercising my brain little by little but with no deadlines and the ability to stop and start when i need too.
the info you've shared with me on the how to explain the over-stim/overload is going to be helpful. I'm going to print it all out for him. He has the TBI guide but I don't know how much he has read. One of the other folks here suggested i give him sections at a time which i thought made lotst of sense. i gave him one today and he read right away.
He is anxious to help and advocate for me. He just struggles to understand b/c he's not experiencing it tho he sees what happnens to me in those situations. And, I've struggled to put words to what it feels like.
I've found a few other posts you written to others, specifically advise to caregivers that I want to share with him too.
I had a VNG test today at the ENT/Audiologist. Recovering from the experience. outcomes were good and I got the audiolgist to try to explain what happens when i get too much input from voices (2 at a time doesn't work) or other sounds, etc.
thank you for putting your time and energy into helping me. I appreciate it so much. I'm hoping I'm feeling well enough to start to share this with him tonight. Knowing him it will be a very good, supportive experience.
God bless you,
Marilee
Quote:
Originally Posted by Mark in Idaho
Marilee,
I found that the more I could avoid or reduce the over-stimulation, the better I did over the long term. With enough days and weeks of these good times (over-stim limited) linked together, I improved to a point where I could tolerate more stimulation.
It is like the over-stimulation is causing a relapse or worsening of symptoms. By having more good days, it appears that my brain heals enough to tolerate more.
What ever it takes to achieve these continuous periods of good days, even if it is living like a hermit, it is worth it.
I have a cabin in the mountains were we spent a lot of time during the early days. Other than the occasional car driving buy, the only sounds are sounds of nature. When I am up there, it's like I am like a different person. I had a myriad of projects from building a garage with a guest cabin above it to doing landscaping work, etc. I did these projects without any time pressures.
They allowed me to exercise my brain but stop when I felt like I was overloading. This is how i do it when I am working on cars. It took me two months to finish rebuilding my transmission.
You will likely benefit from finding some busy-work/hobby/craft work to spend time on. It will need to be something that you can have set up 24/7. This way, you can start and stop working at your own leisure.
I have had multiple tasks available at the same time. This way I can stop one, take a break, then go to another. The stop is in response to the space cadet feeling that comes over me. It may be I find myself staring at the project or rereading the same instruction, or anything that tells me my mind has lost track of what I was doing.
I stop, take a break ofr even a nap, then go back to the project or one of my other projects. Family needs to accommodate your need to switch back and forth.
Your husband needs to understand when you just need a break. He may be in mid-sentence and see your eyes glaze over. It has nothing to do with him. You just hit your limit. He can try to back away and finish his comments later. He may even need to write you a note for you to read later, like when he is gone.
Remind him that you need simple communication. No long drawn out sentences. No overly complex issues.
My comment to my wife is simple, "You lost me." She knows what this means.
Has your husband read any of the TBI Guide or other books about living with someone who has suffered a TBI/mTBI? You really need him on the same page as you. He will become your biggest advocate. He just needs to understand how to protect you when he can and accept you as you currently are.
Regarding riding in the car, You can buy horseshoe shaped pillows that help or you can get blow up travel pillows in the same shape.
Regarding telling others about the sensory overload, maybe this will help.
Imagine a number of strange people throwing tennis balls at or by you continuously from all directions with out a break. Now imagine trying to catch one tennis ball thrown to you by a friend. No matter how well you concentrate on that person and the ball they throw, you still need to dodge the other balls and decipher which ball was thrown by your friend.
Now pretend your friend is invisible. The ball they throw looks different but you do not know what direction it will come from except they will yell catch as they throw it. And, the strangers are also talking and playing catch with each other as they throw the balls back and forth past you.
Now, try to tell this to your husband. Highlight the previous two paragraphs and click on file/print. Select Print selection, and your printer should only print the highlighted paragraphs. Or, you can paste them into word and print them out.
If your husband say this sounds unbelievable, tell him it seems unbelievable to you too, except you live it 24/7.
I can't tell you how often I doubt my own experiences like this. It is usually when my wife confirms it by asking if I am OK that I realize that I am not imagining it.
Hope he will take the time to try to understand.
My best to you.
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