Friday, May 30, 2014

Some things that people don't tell you about epilepsy and TBI

It is not uncommon to become violently ill in regular and rapid succession during and following seizures. I am prone to rolling "episodes" and can be violently ill [aka vomit] every 40 - 60 minutes for several days wherein I cannot even keep down water.  Whether they are suppressed gran mals or highly petulant petit mals, Ben, who is 6 foot 6, a middle school teacher, coach, and camp facilitator, told me that I "shook like a leaf" for the three days of my rolling seizures.  Being a little shy of five foot three and just over 100 pounds, that says something.  This cycle is especially difficult because it makes it hard to get anti-seizure medication into my system and offers little time to restfully recuperate [again, ask Ben: "you just flopped around like a fish in the small moments when you did drift off."]

Here's what I can tell you:

Why one tosses cookies during or post episode is a mystery [I have been doing research online] and not everyone suffers from it but for those of us who do, it's not so much fun.

Keep a bucket or waste basket by the bed for moments of urgency.  And a towel as well as a box of tissues.  It's unladylike of me to admit this, but this kind of vomiting is not like having had one too many drinks.  This feels like your toes should be making an appearance in whatever receptacle you are gracing. Frankly, you will pee yourself and then feel a powerful need to wipe your face. If you are lucky, you will make it to the bathroom, but just be prepared. Trust me that you will have abs and back muscles of titanium after these "engagements" with your gastrointestinal system.

Even though you will likely throw it back up, drink as much water as you can...constantly.  You will be thirsty.  Soooo very thirsty.  Feed that need. 

Electrolyte packets are amazing.  Mixing one with water and drinking one right after being ill, helps your body move toward restoring its balance, thus decreasing dehydration as well as the tendency to repeatedly throw up.  Gatorade / Powerade will work in a pinch, but they aren't well rounded.  The sugar can be a decent boost, but companies like Alacer make packets that are smaller than a credit card and even lighter as well as being quite rounded in their ingredients.  Absolutely handy, quite economical, and completely worth it.

Broth and smooth soups are a blessing and also get nutrients into your system quickly.  Plus, trying to get chunks of chicken and noodles out of your nose is never fun as you are generally exhausted after one of these special sessions with the toilet.

Know that you will likely alternate swiftly between being super hot to being crazy cold.  A wet washcloth close at hand that you can apply to the back of your neck or forehead for cooling and a comforter / blanket in which to cocoon in will be amazing.

When your phase finally ends, embrace the need to sleep.  Honestly, you need that reparation. Your body may have been on constant vibrate mode for two or three days while it decided to be violently ill three or four days in a row, every hour on the hour.  Take a bit of time to snooze that shit off!  Also, fruit is an amazing conduit to bouncing back and anyone who loves you will do you the solid of running to the grocer for this.  Ben and I went through pounds of satsumas, strawberries, and pineapple.  I have no sweet tooth at all, but I basically inhaled two thirds of what we bought.

Finally, thank you to all of you who read me.  This is all new territory, but I'm honored to have you with me on my new found journey and please feel free to ask me any questions.

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