E-day Preppers

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.

Call Me The Dragon

Fruit bouquet, with alien

This post has been stewing in my head since yesterday. We spent Rachel's birthday absolutely spoiling the crap out of her, or so I thought. Her birthday lasted about 4 days, what with all the shopping, lunches, dinner, etc. Every now and then I'd do a little adding up of what we'd spent, and cringe a little at the result. Still, at age 22, she doesn't drive, so we've never had that expense, she's not a shoe maven and doesn't spend a lot of money on clothes and frivolous girly things. 

This morning I was talking with my Mom, and she was asking how things went yesterday, and how Rachel had handled all of the attention and excitement. We talked a little bit about this photo, and the delicious fruit bouquet. We giggled about Rachel's taste in t-shirts, and agreed that whatever she likes to wear is just fine with us. 

Then I said out loud what had been in the back of my mind all day yesterday: Life is short, and people who live with epilepsy often have lives that are cut off in their prime. We never know when Rachel might be taken from us, and I intend to enjoy every day I have with her. She's not spoiled, and doesn't take for granted all that we do for her. Rachel is, as ever, our sweet, loving, sunny sweetheart. 

There is no way of knowing how long Rachel will live. Obviously, we hope she will outlive us both, but no matter what we do, which meds she takes, or how well we monitor her, epilepsy could take her life between one breath and the next. That is what terrifies us, and makes us appreciate every day, and worry every time she's out of our sight. 

Overprotective, hell yes. When you have a treasure in your hands, you guard it with your life.

Happy Birthday, In Moderation

I have a little time to write, but not much, so I'll keep this brief. I wanted to scribble down some of my thoughts on this day, Rachel's 22nd birthday.

As with everything in our life, we have to plan everything we do in advance, and yet be ready to alter or cancel those plans in the event of seizures and anxiety.

Today the plan was to make Rachel her requested birthday breakfast of popeyes (birds in a nest, among other names for it), followed by a bath, and then her morning nap. Then we were going to drive to the Woodburn Company Stores (an outlet mall a little way from us), visit Build A Bear and have some lunch, then return home for bit, and have dinner out at a special place.

So far it's gone pretty much according to plan! Rachel hasn't had a birthday in the last several years that didn't end with a seizure or panic attack. The excitement and over-stimulation tend to tip her right over. 

So, it's now just past 4:30 p.m., we've had our breakfast, early nap, bath, did our shopping (BAB had a 2 for $20 special, so two bears), checked out a few other stores at the mall, had lunch at a very crowded and noisy cafe, came home, Rach was surprised with a fruit bouquet instead of a cake, she played her new Harry Potter Kinect game, and now she, Stewart and Brett are all napping for a bit before we all get ready to go out for dinner. Whew! It has been a busy day for people who don't usually go at this pace.

Rachel has held up very well, so far, but I did suggest the afternoon nap, and I do hope that it serves to bring down the stimulation overload, so that she can enjoy her dinner out, and end the day on a high note. 

Living in E-land means never winging it. That's a recipe for disaster. We live a deliberate life, we don't socialize overmuch, and we keep a routine as much as possible. I have learned to love boredom. Excitement in my home is usually an emergency with Rachel. 

We love our quiet rut.