Have you ever been scuba diving? I have not. BUT I know the basics. Don’t run out of oxygen! But also don’t go too deep. Stay calm so you don’t use too much oxygen at once. Plan when you must get back to the surface. You have a finite amount of oxygen and you must use it sparingly to last the longest. Imagine if you had to live under water 24/7 with this limitation.
A brain injury is the same except we have a finite amount of energy (vs oxygen) each day. Every single little teeny tiny thing draws from that energy. And each day is linked to every other day. If we use too much energy one day, it draws from the energy we have available to use the following day (or days). Unless you are in a dark room with no noise, no movement, no stimulation. And even then your brain is probably thinking so you are consuming energy. I sit on the couch, but I don’t necessarily turn the TV on because that is something my brain has to process, the movement, the light, the noise, the activity, the plot, the emotions. I have less energy than a healthy person, so I have to pick and choose what I can and cannot do in a day. If you let your tank get to zero, then you gotta go back to the boat.
For example, I need to go to the pharmacy, an appointment, have two work calls, walk the dog at least twice, pay some bills, brush my teeth, remember to take my meds, don’t burn down the house. yada yada. Well every single one of those requires in the moment me seeing if I have enough energy to do that task and will that interrupt the next thing on the list. Sometimes I have to cancel something at say 1 pm, because the 4 pm is more important and I just literally cannot do both- not enough oxygen- no choice! And when your tank is almost empty you feel like the worst hangover of your life, or as M says, just tell them a brain injury is like diarrhea. Sometimes you can’t see it coming and its a fucking stinky mess.
If home is where your dark room is with stillness and quiet, then you never want to go too far from home incase you didn’t plan your oxygen tank well and you run out early. Its like a rubber band, stay within the safe zone. Don’t do too many things in a row. Always know how far away from the surface.
For TBI (or Lyme), fatigue is like scuba. You can’t push through your lack of oxygen. You only have one tank and it does not replenish itself.
Do I ever want to try scuba diving you might wonder? I live under water. Every. Single. Day.
