Adulting Can Be Daunting

Soo booorrreeddduh!

Yesterday, our local epilepsy run/walk committee was holding an informal meeting at the Saturday market, and I invited Rachel to go along, which she usually enjoys. She declined, so I took Stewie with me, so he could get some exercise and fresh air. When I got back, Brett told me that Rachel's friend had called, and invited Rachel to go out and do something with her. Rachel also declined that outing. 

Today Brett and I were both ready to order our new glasses, so we loaded up the kids, and made our way to Walmart. I decided that Rachel isn't really inclined to do much if we don't expect her to. We fully respect her decision to stay in if she's not feeling well, etc., but both of the outings she declined are things she usually enjoys very much, and we're afraid that staying in, and doing nothing but playing video games is too isolating, and she needs to do more.

I wrote a short list of groceries, items with which I know Rachel is well familiar, and handed it off to her, as Brett and I started shopping for frames. There was a short bout of sputtering, and self-doubt, but I reminded her that she is quite familiar with the layout of this store, she had her alarm, phone, dog, and emergency ID tag, and I fully expected that she was more than capable of completing this task. Within 15 minutes, Rachel was back, with every item on the list, pink-faced, but proud of herself. I was proud of Brett and myself, because we didn't check our watches or phones even once.

Two years ago, a regular shopping trip, at my side, would have been too much. A year ago, attempting to do this much shopping on her own would have meant a nap after we got home, and then a very quiet evening. Today, she got it done, and then sat and played her game while she waited for us to complete our transaction. Once my part was finished, I grabbed the cart and did the produce shopping (I'm picky, so I didn't expect her to do that part), and then I checked out the groceries, and we all went home.

Now, I know this doesn't sound like a big deal to most of you, but for Rachel, and for us, this was huge. The only time she usually goes off on her own is when she wants to shop for a video game, or something for herself. Rachel hasn't ever been sent off on her own to do shopping for the family, while using a list. She also had to visit the OTC section and find a specific brand and strength of a vitamin supplement she takes. She did a great job in both areas, and what she doesn't know is that from now on we'll be splitting the shopping list, and meeting in the middle. ;)

Adulting is sometimes hard for those of us who are neuro-typical. For the atypical it can be downright daunting to do daily self-care tasks. It's time for us to believe that Rachel has the ability, but we may need to provide the motivation until she believes it, too.

 

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.