Category Archives: Just me

Epilepsy, Just me

Dragging Ass…

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My medication’s most prominent side effect this week is an overwhelming need to sleep. This has been compounded by the mini-dictator’s sudden need to arise and begin conquering the world between 5:30 and 6:00 a.m. Sometimes, life and parenthood do not mix well, like high heels and tapered jeans. (Sorry y’all, this look will never not be tacky.)

I saw my doctor on Wednesday and she seems to think I am likely to adjust out of the “semi-comatose” phase I am currently in, get less distracted, and regain my appetite. However, my intense, sudden, and continued weight loss has gotten her to slow down my medicine ramp up, so I am still only half way to my expected dose. I will remain here until the sense of needing to sleep all fucking day goes away and I can start adding more pills again.

While waiting for my appointment I found a pamphlet from the Epilepsy Foundation on the table by my chair. I picked it up and was instantly struck by it’s heading. “You are not an Epileptic! You are a person with Epilepsy.” It shouted at me, clearly attempting to reassure me that my life was not about to completely change now that I had this … well… life changing diagnosis. (All righty Mr. cheerfully bright yellow pamphlet… I’ve got some time to kill… let’s see what you’ve got to say.)

Intrigued, I opened the pamphlet and began to read. The first two thirds were a very informative discussion about the wide range of variances between epileptic diagnoses, the differing treatments for them, and a fairly comprehensive examination of the Americans with Disabilities Act and the Family Medical Leave Act. The overall theme remained clear though, as a Person with Epilepsy, I can still work, play, run, lead a healthy, normal life, etc. I just have to make a few minor adjustments to my new, state shall we say, and I will be off and running again.

Then, just when I was feeling cheered and starting to relax a little, I got to the safety portion of the pamphlet. Not too surprisingly, here there wasn’t any header about being a person with Epilepsy instead of being an Epileptic, no here there was a lot of emphasis about having your floors carpeted in extra deep pile with added padding and “looking for rounded corners when shopping for furniture”. There was even a section on what to do if you need to wear a helmet at work.

After spending two thirds of the pamphlet assuring me that the my life would change only minimally as a result of my diagnosis, this cheerful bright yellow pamphlet was now urging me to replace my brand new, first ever set of designer ceramic dinnerware, (You know, my fucking post college, adult dishes that I finally bought last year and picked out all by myself) with plastic plates and cups to minimize cuts in the event of a seizure. Technically, I am not even supposed to be cooking with the stove, as the safest route for me would be to cook solely in the microwave.

It went further to suggest I use a cart to take dinner from the kitchen to the dining room, to insure that I avoid any dangerous episodes a “person with epilepsy” might have while transferring hot food to and from the kitchen. A cart, as in, at the Dim Sum restaurant cart, or the middle school cafeteria cart!

I won’t even go into the bathroom safety, except to say we will be rehanging the doors, so they open outward.

I have a small chance of having the kind of seizure these precautions are meant to protect against, but not such a small chance that my doctor has cleared me for bath taking alone. She even lectured me on how dangerous bathrooms are for Epileptics. Apparently this is my new life, I take these medications, hope they prevent these types of seizures, and then carpet my house in really deep pile. Suddenly I am looking at my house the same way I did when Otter and Monkey started crawling and walking.

If I ever develop petit and grand mal seizures, will I fall and bump my head on that? Could that hurt or kill me? Should I get rid of it and replace it with something less potentially harmful? Do I need to gate off the fireplace?

Am I, at 33, seriously babyproofing my house for myself?!

Just me

Coming out of the emotional closet…

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Before I begin this attempt at unadulterated internet communication I feel it necessary to explain that I have become one of those “Pollyanna” people who rarely admit to being anything other than fine. I wish I could say it was out of some brave desire to save those around me from my problems, but in reality it stems from stress and exhaustion, and the fact that talking about my problems means dealing with them. Dealing with my problems, on an emotional level, is a lot harder than simply “moving past” them and on with my life.

Of course, I am perfectly capable of ignoring the effect this lack of dealing has on my life. Hence my reason for being here, tonight, and writing this.

I am not fine.

I am stressed, exhausted, overloaded, sad, and generally too busy to do anything about the above.

I am terrified that my new practice is going to fail, and that even if it succeeds it will happen too late to make a difference in our current precariously balanced financial situation. Everyone tells me it takes three years to make a go at a practice, but tell that to the fucking credit card companies and student loan holders who ask for a combined total of over $2000.00 a month. I don’t have three years to make this a success. I have to succeed at something now.

To top it off, in an effort to lower that frightening $2000.00 a month by deferring my loans, I have gone back to school part time. Therefore I am spending 10 – 15 hours a week on a classload I don’t need just to buy me time to build up the practice. My class time interferes with my practice time, and the babysitting help I have is used up for school and I haven’t even had time to work remotely close to as much as I should have in one class. I am bound to fail it, which shouldn’t matter, except that it will show up on my transcripts if I wish to apply for graduate school someday. Which I do.

I never have time to clean my house, we don’t have the money to fix the leaky roof or the swollen floorboards or hire an exterminator for the hideously large flying ants that have invaded the rooftop deck and pop into the masterbathroom for a shower or a spa from time to time. We have a broken dishwasher that we can’t afford to fix, even though that means more than tripling the time we spend doing dishes.

I am sucking at being a mom right now because I don’t have a lot of time to spend with my children and they are “babysat” by the television more than I ever wanted them to be. I don’t have the energy or the time to play a lot, and I often feel as though all I do is oversee them, instead of interacting with them. I occassionally remedy this by ditching work and school to play with them, but that always results in less success in work and school.

I am not the best partner right now because I am so stressed out that I never feel as though I have time to be a wife. I rarely play and laugh anymore, and I have developed an uncanny ability to fight and argue with my darling husband. I used to take all the things he said with the idea that he meant well, even if they came out really badly. This is an important thing to do when you live with an engineer, they really think from a different perspective and find nothing initially wrong with telling you a dress makes you look “hippy”. To them, it’s a problem solving thing. Thusly it is enormously important that I retain my sense of humor and ability to recognize that he means well and isn’t being a dick.

I am sad because as much as I love my life, and I do, I don’t dream anymore. I realize on every level that I am incredibly blessed. I have an amazing husband, who is a best friend and partner in addition to being a spouse. I have two funny, intelligent, caring, sweet, and lovely children who I get to spend most of each day with. I have a lovely home that, as of yet, is not in danger of foreclosure, and my husband has a job that pays most of our bills. I wouldn’t trade anything about my life at all. I look at my life and I feel like an ass for complaining about it for even a moment.

As a child I spent hours building castles in the air, dreams about what my life would someday be. I don’t do that anymore. It seems a waste of time to dream about things that will never be. I miss being able to lose myself in a rosy image of my future. I miss my dreams.

So I am not fine these days. I don’t know if there is anything to do about it, other than continue to move on with my life and do what I have set out to do. I don’t know why I finally felt like saying this, online, tonight, but I couldn’t help myself. I guess this is part of saying goodbye to my childhood, and hello to everything adult.

Thank you for listening.