I forgot butter today. I planned to make chocolate zucchini bread and I knew I needed another box of butter, but I forgot to put it on the list. I thought about it before I left the house. I said, "Go put it on the list." I didn't. By the time I got to my phone to add it to the list, I had forgotten what I was doing and left for the store. Consequently, my husband made a second trip to go get butter. This is just one of many moments where my mind does not quite live up to its challenge.
That's about what I look like, Goat. Nailed it.
Between 20-60% of people with lupus experience cognitive dysfunction according to the Lupus Foundation of America. That's a wide range isn't it? Personally, I find this symptom to be the most frustrating. It's the most frustrating because it happens so often despite all the little things I do to improve my brain function. One recommendation is to get enough sleep. I go to bed just before 9pm every night so I can get at least 7.5 hours. On the weekend, I usually sleep 8-9 hours even though it's recommended not to sleep in on the weekends. You're supposed to keep your sleep pattern as even as possible. *sigh* Sorry, but by the time the weekend rolls around, I feel like shutting off the alarm and letting my body tell me when to wake up. That's a luxury I don't have during the week. In order to get my coffee, exercise, yoga, and meditation in and then get to work at 7am, I have to get out of bed at about 445am.
Besides, this will happen if I don't get up.
I'm still adjusting to the school year schedule, which means I come home some nights and take a quick, light snooze before dinner even with my mostly regular sleep pattern. The cobwebs are so strong and plentiful by 4pm, that I simply have to rest because I can't think clearly or concentrate. Last week, I had a meeting about our insurance changes after school and uffda! My focus and concentration were not optimal. I find that I have to take copious notes to recall information and even that is taxing. My handwriting tends to get a bit reckless when I'm that out of it. Fatigue definitely plays a roll in the cognitive effects of lupus for me. Not gonna lie.
Me after work.
Notes and lists are recommended ways to deal with the memory issues associated with cognitive dysfunction. I make a list of things to do for the day to help me stay on track. Always have. Besides, the gleeful feeling of crossing something off the list is really too delicious. Furthermore, The Lupus Foundation suggests to stay organized, repeat information back, focus on one thing at a time, and take good care of your body. Even when you do all those, it still sometimes sucks ass.
The static in the brain is exhausting.
Lists are one way I stay organized. I keep a calendar. I keep a tiny notebook in my purse for doctor appointments and things I need to remember when I get home. I use tiny notebooks at school too so that when I check student work, I know who's getting it and who isn't. I won't remember when the day ends, so I need my notebook. Some days I know I wouldn't make it without my notes and lists.
Even when Crowley makes my list, it's still easier than not having one.
Repeating information back is also helpful. When I am learning new information, I mentally say it back to myself or murmur it out loud and sometimes I even say things like, "I think what you're saying is..." That last one though is only for emergency purposes as I hate admitting that I didn't get it the first time. It's slightly embarrassing for someone of above average intelligence who used to be able to remember everyone else's lines in the play to admit that not all the synapses are not firing. I hate when I can't understand what I've read though. I read so much that I hate when I can't remember what just read or forget something important that happened in a good book. It makes me all self-conscious and anxious. I get jittery with all the doubting. When I have to read and reread more than 3 times to get it, I just put the material down and do something else. Clearly I am not going to get anything out of the reading in that situation.
That's about all I get it out of it, too, Chandler.
Focusing on one thing at a time is vital. I love that scientists are busting the theory of multi-tasking. It makes my life simpler. There are few things more vexing than too many things happening at once demanding my attention. I quickly get panicky and nothing sticks or makes sense. I just get so confused that I check out. It's hopeless.
What more is there to say?
As for taking care of my body, I try. I do yoga to clear my mind and wake up my body. It feels good to stretch things out. I definitely feel it when I don't do the yoga. I also get exercise on my terms. A quick walk, a squat challenge, a brief and intense strength training once or twice a week I can usually muster ok. Nothing much more though. Absolutely nothing that involves a trip to a spin class or gym.
Ok, this one might be entertaining for like a minute.
All of these situations blow chunks. But when I get stuck in a loop is the worst. Think Groundhog's Day in your brain. No matter how many times you ask a question and get the answer, you cannot for the life of you make sense of what is happening. You feel like you didn't ask the question correctly, so you ask again. The people around you look at you strangely.Then 15 minutes later, you feel like you didn't use the right phrasing because they gave you the same answer the second time, but it didn't compute. So you ask again. This makes people get terse. They tend look at you like you're stupid, which is how you feel because you're like a needle stuck in the groove of a vinyl LP. It's embarrassing. It's humiliating. It makes me want to cry in frustration because I know my mind is just not connected to me any longer and I have no idea how to reboot. Right now I am recalling a very specific time with my brother in law and husband. It makes me want to break down and sob even now.
It even makes Daryl cry.
Despite all the tricks and techniques I use, my brain still says "Fuck you!" more than I'd like. It's awful when I can't speak fluently. After lunch at work, I can totally tell that my brain is starting to call it quits. The words to the lesson that went so smoothly at 8am is more fractured by 2pm. The fluidity has evaporated and I feel like an inept moron. Lupus and fibromyalgia both have their "fogs," but this is more pronounced. With the fog, it's muddled and words don't always come when I call them, but with the dysfunction I'm talking about, I can't remember shit. I can't say shit. I just can't get the thoughts together to do what I need to do.
You get it, Pooh.
All that is left to me in those moments is to withdraw into myself. Get out of whatever social situation I am in. That escape hatch is the most important thing at that moment. I can't take being around people because my breathing is shallow. My heart races. All I can do is hide away and hope it is all better when I wake up.
A girl can hope. Right, Moose?
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