In the wake of seizure #somethinginthethousands, my mind trips over all the weird times, places and situations in which we've dealt with seizures, and all of the random stuff that happens at the same time.
We've had seizures in the car, of course, and those times have been in the drive-thru of the pharmacy, a fast food restaurant, countless parking lots, while driving 70+ mph in the ultra-fast lane, and many other times.
There have been seizures, and debilitating panic attacks, in grocery stores, schools, motorcycle shops, malls, a body piercing parlor, while on hikes, and the dentist's office. Surprisingly, we haven't had one at a doctor's office yet.
In the beginning of our seizure journey, when Rachel was still having a lot of tonic/clonics, she would wet herself. That doesn't happen anymore, but now whenever she has a seizure, particularly if it's a big one I experience a sudden, and difficult to control, urge to use the restroom. I have IBS-D, and on any given day can be found bee-lining to the bathroom. There is a definite connection between my anxiety level, and my touchy gut. It's a pretty lousy feeling to know that when my daughter needs me most, my gut is insisting on bugging out.
These are things that I think a lot of caregivers don't really talk about, but which are very real. We are just humans. We're not supernatural heroes. We do the best we can for those who depend on us, but we're fallible, and sometimes feeble, ourselves. It can be a juggling act, meeting the needs of our loved ones, and taking care of ourselves at the same time.
I also have rheumatoid autoimmune disease. My condition is good for someone diagnosed over 20 years ago. However, I do have damage, and limitations on what I can physically manage. Rachel is an adult, and about the same size I am. If she collapses, I can manage to help her get to the floor without injury. I can usually get her rolled onto her side during a seizure, but sometimes she fights me, and then she'll begin to choke on saliva, so I struggle to turn her and keep her there. If she's sitting upright in a chair, we sometimes have to restrain her, in order to keep Rachel from getting up and walking off. She's strong, and during a seizure doesn't have the brakes she does while lucid. Rachel has scratched my cornea, my arms, and legs during seizures, and will sometimes get a grip on my wrist which hurts. Trying to restrain her, and keep her from getting a grip on me can be a challenge. We've had to peel her fingers off of Stewie's paw, because she was gripping him so hard.
Rachel will sometimes drool heavily during seizures and panic attacks. It seems like gallons sometimes. I keep a small towel in the car, and the first thing we do when she indicates a seizure is grab a towel. There was a time I considered keeping a spare shirt in the car, but never got around to it. She has soaked herself many times. She's always dismayed by it when she's herself again, and we've had to leave someplace sooner than intended, or turn around the car, and go back home for clean clothes, before carrying on with our errands for the day.
We've cancelled plans so many times I can't count them all. We've arrived late, or left early, for many events. Rachel didn't get to walk at her high school graduation because the day got too long, and she was totally overwhelmed by the time they were finally lining up the graduates. That was heartbreaking for all of us, but asking her to push herself would have likely just resulted in a massive panic attack and/or seizure.
Friends and family are always understanding and kind, but we always feel bad when we have to cancel at the last minute, and with epilepsy it's always the last minute. There's very rarely any sort of build-up that warns us of an impending problem. It's not like coming down with a cold. You're dressed, have keys in hand, or actually already in the car, and the seizure hits. If it's a small one, we can usually carry on. If it's a big one, and especially if we have to use a rescue med, she'll be too tired, and knocked out, to go anywhere. There have been times that we've had to let her sleep off part of it in the car, before she would be alert and physically stable enough to walk into the house.
This is definitely a very short list of the reality of our epilepsy experience. I think it is the very random nature of the condition that really makes it difficult. There are no two seizures or situations that are the same. At any given time, there can be a new symptom, a new trigger, or a new manifestation. We never know what will happen next. We are not the type of people who flourish under stress. We all prefer a routine, and epilepsy is anything but. We have been forced to adapt to a very random, and sometimes intensely scary, life.
The best thing we can do is just always be sure that we have on hand all of the items we might need for the next seizure. I always have a magnet for the VNS, a vape pen, a towel, and a dose of cannabis oil. We now keep a screw driver next to the door of Rachel's room. There is a level of vigilance that never goes away. It can be exhausting, and yet the anxiety can keep us awake, when what we need most is sleep. I have learned to sleep with the static of the video monitor next to my head.
I sometimes wonder if I'll ever fully adapt to being the caregiver of someone with epilepsy, but I also never want to accept that it won't get better. I fight the reality that this is how it will always be for us.
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