At some point along the way, John and I began to use our own lingo to define how he is feeling on a given day or at a given moment. It’s extremely useful and a quick way for us to check-in with each other. I can ask, “What sort of brain day are you having?” He can quickly answer with, “It’s a [good, bad, fuzzy] day” and I know immediately where he’s at and how he’s feeling.
Below are definitions, in a nutshell, for the three types of days and what they mean for us.
Good Brain Day
- well rested
- has taken medication as prescribed
- can have a conversation
- can speak at a slower, not as rushed, pace for fear of loosing thought process
- can generally remember where items are, i.e., keys
- pain is minimal
- has energy
From my perspective: On these days, John appears to be pretty normal (maybe I should rather say well-functioning). He is himself. He wants to do things, engage with family, get a project done around the house, and so on.
As long as he sticks to his routine and manages his fatigue, he can have a number of good brain days.
Fuzzy Brain Day
- difficulty following conversations
- extremely groggy
- easily disoriented
- easily overwhelmed and frustrated
- pain is bad but not debilitating
- medications have little to no impact
- should not do anything but rest
- has memory loss and blackouts, where he only remembers snippets
My perspective: On these days, I can tell he’s struggling because his eye lids droop, especially the left one, his brow furrows, his eyes squint (as if he’s in bright light or intensely trying to concentrate), he often will shake his head as if trying to clear it. In a fuzzy brain day, I think people think John is grumpy or tired – not that there is something wrong with him.
These days are a slippery slope. A fuzzy brain day can last an entire day, or he can start with a good brain day and go into a fuzzy brain day or worse. Once he’s reached a fuzzy brain day, he typically is not back to a good brain day until the following day, and that’s only if he has rested well. Part of his routine is a daily nap. He wakes up from his nap in a fuzzy brain day but is generally feeling better within 30-60 minutes after waking.
On these days, John can wake up, take 40 mg. of Ritalin or 400 mg. of Modafinil, both of which are stimulants, and immediately return to bed and sleep. If he does anything except rest, he can quickly slide into a bad brain day.
Bad Brain Day
- totally symptomatic
- cannot maintain a conversation
- slurs words
- gets lost and cannot follow a train of thought
- forgets what he has done (Example: John has been stopped by a neighbor before asking him why he kept driving around the block. At this point, he had driven around the block 5 times because he could not recall if he had shut the garage door. He was compelled to drive by again to double check but would forget by the time he reached the end of the street.)
- can appear to be intoxicated or drunk/cannot drive (For this reason, John has a camper that he will drive to doctor’s appointments or for things he knows will be fatiguing. This way he can nap inside the camper before he leaves to drive back home.)
- pain is overwhelming and debilitating
My perspective: On bad brain days, it is obvious that John is in pain and struggling. I think others can notice when he’s having a bad brain day; however, most people do not see him like this because he’s usually in bed. If they do see him, they would likely assume he is drunk. This has happened before when a flight attendant thought he was intoxicated and rebuked him.
Thankfully, these days are atypical now. When we were first coming to terms with his injuries they were more common. John and I do everything we can through structure, routine, and strictly controlling our time and activities to keep these days from occurring. When they do happen, it takes John days of rest to overcome them. If John gets to a bad brain day, he cannot function normally. About all he can do is rest.
Positives
On the positive side, John does not suffer from seizures, incontinence, impotence. He does not have involuntary muscle contractions. He has vision problems from his TBI but his issues are in his periphery, not his direct vision. He gets tremors but the medication and a good routine helps greatly. He is grateful for his good support structure and that he still has the opportunity to have good brain days.
TBI Spouse (and Others) 
I passed your site’s address to the current owners of O.T. Plus and they said they would share it with all the therapists. I think there are a lot of people who could benefit from your experiences.
Thank you! If there is anything you think would be good to write about, let me know.