Self Defense

Identifying the Enemy
You can look into a crowd and not see a face, only the crowd. But once you are shown a face, you can easily spot it, much like a “Where’s Waldo” book. I don’t know if I’m having more seizures or just that I'm more aware of them, now that I know their identity. Thankfully, I don’t have the “fall on the floor and pee yourself” type seizures. My heart goes out to those that do and I am sure I have just violated an Epilepsy Code rule by calling it as such, but my seizures are not the grand mal type. What I have are partial onset focal seizures. I have pulsating, muscle spasm sensations in most commonly my eye, eyelid, or lip, crawling and tingling through my head and scalp multiple times a day. These episodes are followed by tiredness and sometimes nausea and the desire to cry. My seizures are such that besides the imbalanced lean into the wall and the occasional falls, you wouldn’t even know I’m having them..no one knew. No one at work knew I was having seizures at my desk, my family did not know I was having them throughout our Thanksgiving and Christmas gatherings, no one knew besides my husband and myself. My seizures are such that I can keep them a secret and not tell anyone I’m having them until a worse for wear one causes me to have an emotional “come out” tear fest at work and I go home to bed for the day. I could keep them a secret until the secret seemed to feel too heavy to bear and exploded out of me.

My Ammunition
My doctor tripled my dosage during my last appointment. The increase has me tired, but I’m adjusting, I will continue to adjust. I think the medicine is working, I think the seizures are lessening, but it’s like the face in the crowd and I don’t know how many faces were there before I learned to identify the enemy. Now that I can identify the enemy, I know when it’s there.

Setting My Sights
I’m learning that stress triggers seizure activity. I’m learning that I apparently fail miserably at handling stress, though I thought I was managing it. I'm learning that tiredness triggers seizure activity. I’m learning that if you don’t slow down, your body will make you slow down. I’m learning that I need to take a moment, many times a day, and that’s okay. I’m learning to turn off my phone and I don't have to live others' schedules. I’m learning to go to bed early when I need to and sleep longer on the weekends. I’m learning that one of the hardest things for a driven overachiever is realizing your limitations, accepting them and making lifestyle adjustments to adhere to those limitations. I’m learning and I will continue to learn with each step of this journey.

Catching Balance

I start my doctor’s orders: anti-seizure medication, physical therapy and slowing down. The first few weeks of medicine were rough and riddled with more headaches than I normally have, tiredness and possible mood swings? I’m not sure if the mood swings were the medicine or my roller coaster of emotions about my diagnosis, what it meant and what the future would hold. Upset because I was not in control of what was happening, anger at the loss of control and the fact that I would be on medication from now on, fear at how this would progress and grieving what I felt was a loss of my independence. Physical therapy was well, physical therapy. Two to three hours of another appointment in my already full schedule. Juggling my lunch breaks for physical therapy appointments so as not to miss work or use sick pay, feeling guilty all the while and mad again at the theft of my time. The therapy did help, to a point, but the dizziness and imbalance are still there. I have some days that are dizzier than others where I feel like a top wobbling around at the end of its turning. I learned to sit down, wait, lie down, rest or recalibrate myself. I constantly “lean” into walls when I walk, but it’s been a long time since my last fall. I attribute part of this to my learning to slow down my previously fast paced self. I walk slower, use hand rails, constantly look at the steps I take and when walking alongside my husband… I hold his hand. I think that’s probably the best part of all of this. I learned to hold his hand, to let him help me, to realize and accept that I am not in this alone. He’s always there, always has been. I used to be very stubborn with my independence, but I find comfort in reaching for him and having my hand in his…I think he likes it too.

Falling

I started falling over a year ago. Cursor blinking as I type “I started falling over a year ago” it sounds like a chapter heading or the first sentence of a love story, but this is not my love story, this is the first sentence of my story of living with seizures, living my new normal of epilepsy and all it entails. So as stated, I started falling. Not a blissful fall into flowers in a meadow or bedding or on the trampoline with my kids, but falling into walls onto sidewalks, curbs, gravel and the all-too-often asphalt of parking lots. The first time or two I chalked it off to clumsiness and would be the first person to tell on myself for doing so and laughing it off. The thing about falling is not that it can be embarrassing and hurt your ego, but falling hurts. Falling causes bruises. Falling causes scrapes and cuts and pain.  Falling or tripping every now and then can happen, but my falls had progressed to a point of every couple weeks. Just as one bruise or scrape would heal to a point of disappearing, another fall would create another wound to replace it. Laughing it off was no longer possible as I pushed back the pain to hold my tears, as I pretended that I was okay. As the falls kept happening, my laughing turned to fear, tears and wonderment of what was causing what I knew was not clumsiness.

My last fall was my breaking point. I fell on a sidewalk in front of family and friends. Immediately my husband was asking me if I was okay as my children waited for my reply too. Once again, I said I was okay, but my hands burned as breaking my fall had skid the skin on my palms and I knew my foot was scraped again. I got into the car and as we sat later in the booth of a fast food restaurant, I recoiled in my thoughts, replayed every fall I had encountered and knew that this was not clumsiness, this was wrong. A few days later I told my chiropractor that I had fallen again and he referred me to a neurologist. The neurologist ordered the normal workup for someone having balance issues: MRI and EEG with what is apparently the normal waiting time for any test that can tell you if you have something wrong with your brain, 2 weeks and another 2 weeks to wait for your result appointment. A month after my initial appointment, I sit across from my neurologist in his stereotypical monotone voice and listen as he tells me that my MRI was normal, but my EEG is abnormal. He goes onto say the EEG reading shows an “underlying seizure disorder” and basically it’s these misfirings, these mini seizures that are causing my balance issues and the falls while I am walking. I will have to slow down, start anti-seizure medications and try some physical therapy to see if it will help my balance issues. I leave his office with medication samples, a prescription, my EEG report and a phrase that will not escape my thoughts “underlying seizure disorder.”

I go to work, go about my day with “underlying seizure disorder” repeating in my head…and then the questions come: Will this progress? What if I’m driving? What if I’m alone? What if I’m alone with my kids? What IF…what IF…what IF? It’s amazing how big of a word “if” really is. Amazing how we can let it take over a situation. What if I turn it around? What if I start the protocol my doctor gave me? What if I start the medicine, go to therapy? What if I take it step-by-step?