6:30: Wake-up completely and get out of bed
Evening: Chat with friends, go for drinks, watch movies, read, run
Most of that is standard for most people, excluding the medications.
Morning: The time difference between when I take my medication and when I get up. I used to have seizures only in the first 15-30 minutes after waking up. While that is not the case anymore, that doesn’t change decades of habit. It especially sucks on weekends when I don’t have to wake up early. In the morning, I am also still hyper aware of what my body is doing. If I drop my coffee when leaving a coffee shop, I have to assess whether it may have been a tremor, small seizure, or if I just stumbled or was holding too many things at once. If I jab myself in the eye with the mascara wand: was that a tremor or am I just bad at putting on makeup right after waking up?
During the day: I always have medication with me. I have it in my purse. That way, if I decide to pick up groceries after work or meet for a visit with a friend, I have it with me. There is never a time that I don’t have my medication available to me. I might forget my wallet or phone but never my meds. At my workplace I keep a spare blouse and pair of slacks, in case I trip and tear the pants I start the day with and a blouse because I have bled from my hands onto a shirt if I am lucky enough to catch myself.
Evenings. In my running belt, I have an evening and morning supply of medication. I have all of my emergency contact information as well as my prescriptions and allergies. Even though it’s somewhat cumbersome, I always have that belt, just in case. As mentioned in the day, I always have my medication with me. All of my friends have my emergency contacts, even if they have never met.
Like a creepy haunting, I am never alone. Even if I have not had a seizure recently, I am always aware and prepared for those situations.
At the end of the day though (for me, usually 9:00-ish because I love pyjamas and reading in bed), it’s really not that inconvenient. Yes, I have to have my medication with me. I have a giant purse with me anyways and while running I would need the belt for my keys. Yes, I have to be super aware about the state of my body but that has been a benefit to me in running and the times I’ve been out socially. Whether we want to compare it to being a woman and/or to being a runner, these measures are not out of place.
We have different types of epilepsy. We have different versions of the conditions and sometimes additional conditions compounding it that might make it a little more difficult to manage. No matter what though, it is possible to manage it. We have a life where every day we have to be more aware of ourselves and our attitudes. We have lives where every day we have to be aware of what we are feeling physically and emotionally. That gives us the opportunity for a consciousness that some people never experience.
It might be easier to exist without epilepsy. I don’t actually know anymore. What I know is the accountability and reliability of being responsible for taking medication twice a day. I trust in my ability to be dependable. What I know is how to assess my body for injuries, triggers or changes. I trust that when I am running to know when to walk because something isn’t right even if it has nothing to do with the condition. What I know is how to tell when a bad attitude is the result of regular restlessness or reactive to an event. I trust in my ability to solve that emotional state on my own, by reaching out to friends or by needing to speak to a neurologist.
How many positive things in our lives can we trust in because of epilepsy? I bet it’s more than expected. Epilepsy in everyday life gives us a personal awareness in ourselves. We have more to build upon because of it. It’s a foundation to who we are as long as we are willing to listen.