Brain Function, Lupus and Where Did I Put My Keys?
by Jesse Loren
Lupus SLE, my autoimmune disorder, comes with some special perks. It’s not a giant fruit basket in the Green-room, or bowls of blue M&Ms, it’s brain fog. And not your garden variety, over 40, menopausal, mad-cow disease many women get. It’s worse.
It’s sort of like having a hangover, the kind where your brain feels 5 sizes too small, except I didn’t drink. All I did was wake up that way. And it’s been months…
It isn’t quite dementia either. The Lupus Foundation of America describes brain fog as “difficulty completing once-familiar tasks, remembering names and dates, keeping appointments, balancing a check-book, paying bills, processing thoughts.” For me it is worse than that combined with S-L-O-W (but accurate) recall.
Imagine you remember you have an appointment with what’s-his-name and you know for sure you won’t remember where the office is, so you try and look it up, but can’t remember his name, and you know the building is a landmark building, so you try to remember the name of that, and you can’t. In fact, you just woke up but feel like you were run over in the night. Everything aches; everything feels like crap, even blinking takes on a slow, sticky feel. There’s no smell of bong water around, so you know you aren’t high. The phone rings. You answer it and try to talk, but the words don’t come out right. You think you sound like an idiot, so you get off the phone, pick up the computer to look for clues of what the heck you are supposed to remember, but you are still steeped in a fog so thick a Range Rover can’t drive through it.
Mine got bad enough that I would get lost on familiar roads; I’d feel like I had a disorienting migraine, but no headache, just all the stupidity and twice the confusion. I got scared. I finally talked to my doctor about it, and it took two months to work up the courage to schedule an appointment.
What if they find out I am crazy? What if they put me in a home? What if it is something even worse than Lupus? Do I really want to know?
It seemed the more I thought about it, the more I worried. The more I worried, the more anxious I’d become. The more anxiety, the less I could sleep. Less sleep, worse concentration and memory. YIKES!
The only beauty of brain fog is forgiveness. All the bad things get foggy too, so grudges get less grudgy. That’s a good thing.
One reason to find out what it is is to get a baseline of what is happening in order to do comparisons later on. Another reason is to detect the problem in order to focus on solutions.
I finally got the brain appointment, went in for the 6.5-hour battery of tests, and got my results. I am not stupid; but I now process about as fast as a bullfrog.
My mind needs time. It gets it, but slowly. When I get anxious or frustrated, it’s really bad. My brain has a cognitive disorder, and it’s having a bad hair day. Everything soaks in there, but the processing speed has slowed. There’s also the issue of pain management. Pain undermines concentration, and like many Lupus folks, I have constant pain. And the headaches. Apparently they are “atypical migraines.” All the migraine symptoms other than the headache.
So, what does one do when they have a demanding job, a demanding schedule, and a Commodore 64 brain in an Intel processor world? What do you do?
First, forgive yourself. Be kind and learn to smile before firmly stating, “I’ll need to get back to you on that.” Learn to buy time, and remember to follow through.
Second, build a new regime. Mine will include B vitamins, more sleep, exercise, a cognitive or behavioral therapist, massage, puzzles and games on my iPad, Devonthink software, and more organization and preemptive planning for things that require quick problem solving.
In the meantime, I wonder what tips other people have for maintaining a healthy brain. As long as it doesn’t involve porn or religion, I am all ears!