My Saturday revolved around a rectal syringe. (Great first line huh?) It felt dirty. Not necessarily dirty, but….. exceptionally sad. I’d tried so long to avoid it. Increasing the pills already, apparently, failing to work. Then CBD oil to no avail. And I knew I was just putting off the inevitable while having number 62, 63, 64… hearing my husband say, “I think it’s time.” Me with a jumbled “hold on, hold on…. Just let me look at it for a minute.” Maybe they’ll slow down between now and then. Ha.
And as another rolled by and I proceeded to drop food on my nightgown while I insisted on feeding myself in between seizures, and then managed to drop it on the floor or smear it across my cheek when my hand would fly up to my face during the next one. I finally gave in, let my body loll back against the couch and sit in all my stubborn glory… an edible painting smeared across my face, arms and nightgown in the end. I looked ridiculous and my heart felt unbearably heavy. Hard to breathe with its weight on my chest.
How far I’d fallen in the last week, but Saturday decided to really give it to me. And so much for my stubborn insistence they would decrease if I just willed it so. If I breathed, if I slept, if I gave in and calmly rode them out. But it didn’t let me. Never does. People who believe one “does epilepsy to him/herself” can stop right there. I’m trying to live my life… and epilepsy does this to me. I would never choose it. Elusive peace. Who purposely wants a part in such a chase? So I continued to count 65, 66, 67, refusing to use that syringe. I held it in my right hand, staring into nothingness. My husband sitting on one side, pulling the smashed food from my clenched left hand. And my son on the other side asking me to play a game, if that would make me feel better…
After a while I lost count, I couldn’t remember in between seizures. I still tasted the CBD oil, the failure of it and my pills, and my stupidity.
Just take it. Read the directions once more (really Megan?) and do it.
I wanted to do it myself though. Get me to the bathroom. I’ll do it myself, I thought. I also thought- this is where I am. Again.
Gawd, you’re a circle. A torrent. Damaging, unpredictable, pulling me down from a high, crushing my confidence… humiliating me if only in my own mind. Pillaging my most significant, most intimate accomplishments. My past weeks of diminished seizures- we’re talking 3-10 a week- such relief. No more.
So I stood in the bathroom, staring at myself, soaking in a mirrored face of dilated eyes, the left side slightly drooped, and altogether empty. At a certain point, anger loses its vigor, its presence replaced by defeat. And so I did it. I locked the dose to its highest (per doctor prescription), clicked the green “ready” band (I found that ironic) into position and “administered” the med. Miraculously, for me (not all cases) my seizures stopped within a few minutes as the drug’s intended… but I can’t use it every time I’m experiencing clusters. It’s an emergency drug for a reason. And of course there are side effects.
Today’s Sunday. The recoup after a storm. My body’s tired. Just exhausted. Frankly more tired than it and I have been in many months… and that exhaustion is weighted beyond blank stares, slow responses and lumbered steps. It pushes you down deep into those recesses of what-ifs just when you’ve started to float on the how highs.
And the counting. I’m tired of practicing my numbers. Hundreds of milligrams of pills, a dropper of oil, a vial of gel, all the while they add and add. I gave up at 67; my husband said I finished close to 100…
But who’s counting.
Have you looked into intranasal midazolam? It’s still off-label in the U.S but your doctor can still prescribe it. It’s more effective than Diastat, cheaper, and well, less humiliating. :/
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No… I’ll ask my doctor. Thanks for the recommendation!!
So sorry Megan ☹️ Praying tomorrow will be better. Hugs 💜
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